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FRIDAY, MARCH 31, 2006
There was really no change today. Norm and Alex went back out to the ranch
for the weekend. They left this afternoon. I told Norm he should go alone
and take some time for himself and I would stay with Alex, but we both know
how much Alex enjoys it there so he decided to take him along. Alex seems
to respond to Norm better than he does me lately. I have a difficult time
getting him to do things, Norm must have a better method of persuasion than
I do!
Dr. Keppen's office called me regarding Alex's appointment at Mayo. Norm
feels we really need to make the appointment next week at Duke, so I told
them to schedule it sometime after next week. They haven't gotten back to
me regarding that yet, but they did call me in regards to the MRI Alex needs
before we go to Duke next week. After a week of fighting by Keppen's office
and Duke, the insurance company simply will not pay for an MRI at this time
because it's too close in time frame to the MRI he had last week.
Understandable - they are saying not much should have changed over that
period of time (that's debatable!) However, Duke requires an MRI within one
week of the end of the 6 week cycle - to stay within protocol - Alex needs
another MRI next week. In order for him to have an MRI next week, we will
have to pay for it. If he doesn't have it, chances are he will be removed
from this clinical trial for not following protocol. It doesn't mean he
couldn't continue to get the same treatment (drug combination), Dr. Keppen
could prescribe it since both drugs (CPT-11 and Avastin) are FDA approved.
(Did that make sense?) Alex isn't having an MRI next week - unless Duke
wants to pay for it. It really doesn't matter to me anyway since our current
plan is to remove him from this particular trial. Interesting how that
worked itself out - I'm guessing it was meant to be!
My day was spent running Brianna to different doctors. They think she may
have torn her meniscus in her right knee and she is scheduled for an MRI on
Monday. I didn't even know what a meniscus was before today. Her knee has
been bothering her for over a month now but really started to get bad the
past two weeks. I pray that's not what is wrong as that would require
laprascopic (not sure I spelled that right) surgery to repair. Another
possibility is inflammation due to spinal misalignment. I'm hoping for that
one. I can't imagine keeping her down for surgery and recovery. Land
practice started tonight for water ski season (Sioux Falls Water Ski Club -
Catfish Bay.) She's been looking forward to that for weeks. It will be a
bit tough climbing those pyramids on crutches!!!
My evening was spent at home - alone! I can't say it was nice - it was ok.
I had a glass of wine and watched a few movies and talked on the phone. I
want to thank all of you for the phone calls and e-mails of encouragement
for myself and Norm. I sometimes have to tell myself we're doing the best
we can, but when it's your child - sometimes you feel totally helpless. I
still want to take all of this away from him - God knows I would trade
places with him in a heartbeat! But I can't, so I need to find the strength
for him and the rest of my family to move forward each day. Some days I
open an e-mail someone has sent with a bible verse, words of encouragement
or just letting me know they are thinking of me (us). They always seem to
come at the right time and help more than any of you could know. THANK YOU!
From the bottom of my heart - from the bottom of a mother's heart! Thank
you and God Bless!!
Remember to PRAY and BELIEVE.
Two different people sent me this bible verse today - I think God is trying
to tell me (or maybe Alex) something!!
It is Jeremiah 29:11 "For I know the plans I have for you," declares the
Lord, "plans to prosper you and not to harm you, plans to give you hope and
a future. Then you will call upon me and come and pray to me, and I will
listen to you."
THURSDAY, MARCH 30, 2006
Today wasn't a very good day. Alex had a very bad morning - he seemed
really "out of it." He was a little better in the afternoon and then in and
out again in the evening. I spoke with the nurse at Duke about this
continual decline and although she didn't come right out and say it, I
believe they may think a lot of this recent memory loss could be due to the
Avastin. This made me really upset. All along we have followed the
doctors' advice. I feel we weren't given up front information about the
potential side effects of the radiation treatment in the beginning and that
we, ourselves, probably didn't look into the side effects of the Avastin
well enough. We have trusted the doctors and now I'm wishing we had done
more of our own research. (I've come to realize that most of cancer
treatment is just a guessing game.) We can't change what's happened, only
where we go from here. But I can warn others if they are ever in this
situation or one similar - not to rush into anything. Research it, talk to
others who have been there, get as much knowledge as you can about the
treatment being recommended before you make that decision to do it because
you can't go back. The drug, Avastin, prevents blood vessels from forming.
Basically it smothers the tumor by not letting oxygen in. In Alex's case,
the location of his tumor directly affects short and long term memory. By
limiting oxygen to this area of the brain, it could have caused damage to
the surrounding tissue as well. This, combined with the radiation side
effects, could be the cause of most of the problems he is having right now -
(because of - but) not the tumor/cancer itself. It makes you wonder how
many people lose their battle with cancer due to the treatment and not the
cancer itself.
I spoke with Dr. Keppen's office today and they will be setting up Alex's
appointment with Mayo. I told his nurse that we were due to go to Duke next
week but if things continue as they have, I'm not sure Alex will be able to
travel (via air), so we may be going to Mayo as early as next week. I should
know more tomorrow. Whatever happens, I'm almost 100 percent sure we are
removing Alex from this particular clinical trial. If Duke should suggest a
different trial, you can be sure I will be doing a lot of research before I
say yes. Norm and I did discuss Alex taking a break from chemo anyway.
He's been on it since October. I also asked the nurse at Duke to inquire
about either getting a PET scan or perhaps a DTI scan (which is really new
and I'm not sure Duke has access to a machine - plus I couldn't remember the
name of it when I was talking to her - I was driving - so I need to call her
back with that tomorrow) before we proceed forward with any treatment. She
told me she would talk to the doctors and get back to me.
Normally, I ask all of you to pray for Alex and the other cancer patients.
In addition, would you mind saying a prayer for me and Norm as we struggle
with making the right decisions for Alex. I feel like I've kind of failed
him this far and I know deep down in my heart he can beat this with the
right tools - the first one is your prayers, the next being the right
treatment. Pray for knowledge, wisdom and courage for us! As for me, I
will try to heed the advice in Psalm 27:14 "Wait patiently for the Lord. Be
brave and courageous. Yes, wait patiently for the Lord."
PRAY AND BELIEVE - FOR ALEX'S MIRACLE WILL HAPPEN!
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WEDNESDAY, MARCH 29, 2006
The boys made it home from the ranch late this afternoon. They stopped in
Sioux Falls prior to coming home so Alex could get lab work done. Alex was
feeling pretty good. I wouldn't say his memory is much better and he seems
to have acquired a few new "ticks" which concern me, no matter, I was very
happy to see him.
Most of my day was spent on the phone. I don't have an appointment set up
for Alex at Mayo yet (my first choice) as I wanted to wait until I had a
chance to talk to Norm in more detail and he didn't get home until late
afternoon. Prior to making an appointment at Mayo, we have some questions
for Dr. Keppen. I will get a hold of him tomorrow. Normally we would see
him on Friday, but this is Alex's "bye" week from chemo - YEAH!!
When I wasn't on the phone today, I was surfing the net again. I'm trying
to gain as much knowledge as possible. In the past, I relied on Norm to do
all the research but have decided I need to be more "informed." It's tough
figuring out what to believe and there's a lot of stuff out there. While
surfing today, I became (for lack of a better description) really pissed off
at the pharmaceutical companies. I'm so grateful Alex has health insurance.
I didn't realize the cost of some of these cancer drugs. Ok, I have to say
it - I truly believe there is a cure for many diseases out there - cancer
included - that is being withheld, shut down (whatever you want to call it)
by these giant pharmaceutical companies. Norm disagrees, but I don't
know....makes you wonder. Money (unfortunately) is a powerful thing!! I
believe God put us on this earth with everything we need. A cure is out
there and may already have been found. Makes you sick to think about it.
Did you happen to see Good Morning America this morning? A facility in San
Francisco is treating cancer (they showed a brain cancer patient) with a
vaccine from the patients own tumor. They make a vaccine from the tumor and
reinject it into the individual to allow that person's own immune system to
fight the cancer. Much like an immunization. It made perfect sense to me.
I'm assuming the only way this would work for Alex is to have another
surgery to remove more tumor. So it's probably not a viable solution for
him.
I've included a couple of pictures today. One is of Alex, Adam and Dusty
out at the ranch. Although the boys were all together out there yesterday,
this picture is from January. The other is of my tulip picture - thought
you might like to see it. Thanks to Brianna for taking that picture for me.
As always, keep praying. Not just for Alex, but for the many others who
suffer from this horrible disease. God Bless!!
BELIEVE!!
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TUESDAY, MARCH 28, 2006
Norm and Alex are still at the ranch. They decided to stay another night
and will return home tomorrow morning as Alex needs to have labs done. As
much as I miss them, I know Alex enjoys his time at the ranch. His weeks
are freed up some now that we are no longer doing therapy.
My day was spent with Meagan B. She is helping me organize photo's in
albums. We ran a few errands in the afternoon and in the evening worked on
the albums again. We didn't finish but she's currently on spring break so
our plan is to get together again later in the week.
I want to take this opportunity to thank my friend Angela (and Jason!) As
an outsider looking in, she has opened my eyes to many things that I, being
so close to this situation, haven't noticed or realized. Angela called me
tonight and we talked for a very long time (her husband Jason also has a
brain tumor). Afterward, I immediately called Norm and briefly discussed
our conversation with him. I am seriously considering removing Alex from
the clinical trial. We will talk more about it tomorrow. This latest loss
of memory and bodily function has my thoughts turned toward quality of life
as opposed to quantity of life. What if, by chance, Alex's memory loss is
due to the chemo and Avastin he is receiving through this clinical trial and
not the radiation? They are, after all, poisons. What if the cancer is
already gone and a benign tumor is all that remains? An MRI can't tell us
this. A PET scan may be able to, why hasn't any doctor ordered a PET scan?
What happens if we stop treatment - maybe for a cycle? These are just a few
of the questions that I NEED clearer answers to. I know that Norm and I had
previously discussed getting another opinion from MD Anderson in Houston
(and we may still do that) but my thoughts are closer to home. In
particular, Mayo and the University of Minnesota. It may very well be that
the path we are on is the right one. That the memory loss is from the tumor
location and radiation, but I can't rest until I know I have done absolutely
everything possible for Alex. As I stated yesterday, this is a time for new
beginnings. God is speaking to me. An angel called me tonight, her name is
Angela!!
Please keep Jason and Alex in your prayers!! Angela, THANK YOU!! And
never, ever, ever stop BELIEVING!!! Miracles are happening every day.
HUGS AND PRAYERS, Kelly
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MONDAY, MARCH 27, 2006
After a bit of a hectic morning, Alex and I made it to his therapy sessions
only 5 minutes late!! Norm and I spoke with both the speech and
occupational therapists today and made the decision to discontinue both
therapies. Both therapists had noticed the dramatic decline in Alex's
memory the past three weeks and suggested they weren't doing him any good.
We decided if we started to notice improvement in Alex's memory, we will
begin therapy again. This was a very difficult decision but I believe the
right one at this time. I will talk to Dr. Keppen and Duke about the
decision.
After therapy, Alex and I ran a few errands and then went out for lunch.
Because of the world record Alex was trying to set eating his lunch, I lost
my patience. I felt absolutely terrible after it happened. As you might
think, he has no memory so he won't remember it anyway - right? This, of
course, he remembered. He felt terrible, I felt terrible. I couldn't
believe I let something as minor as that set me off. After many apologies,
we ran another errand. When we walked into the store I noticed fresh cut
tulips and told Alex I wanted to buy some before we left. We walked over to
pick out the tulips and there were two small bouquets of white ones left. I
picked them up. Later at home, Alex stood next to me as I arranged them in
a vase. I asked him if he knew when tulips bloomed. He couldn't recall. I
told him that they bloomed in the spring - a time for new beginnings and
they were white, we were going to have a pure, fresh start. A "good"
feeling (perhaps a "God" feeling) came over me and I started to act kind of
goofy as I told Alex I knew this symbolized the beginning of something good
and that things were going to get better starting today. He laughed and even
had a couple hard belly laughs - which is music to my ears as he doesn't
have much expression these days. I put the vase on a table in our living
room. Later in the day, as I recounted the story to my niece, Heather, on
the phone, I looked at the tulips and for the first time noticed the picture
hanging directly behind them. Now keep in mind we are living here
temporarily and I haven't decorated much, but I did hang this picture over
the fireplace in the living room. The picture is of three white tulips and
below them it reads "Faith, Hope, and Love." I believe in signs, I believe
God speaks to us - sometimes we don't listen very well - at least I don't.
And I believe this is a new beginning. Things are going to turn around and
get better. I believe Alex will be healed!! Keep praying, prayer is
powerful.
Norm and Alex went to the ranch this afternoon. They will return tomorrow
evening. Dusty and Adam are joining them. I'm glad Alex will have some time
with his friends and although I already miss him, I know I need this time
too. Bri is in her room on her computer - nothing new here! Tomorrow are
tryouts for the high school cheerleading squad. I wish her luck. Nicole,
Bri thanks you for the balloons, flowers and words of encouragement - you
are awesome. By the way, in case any of you are wondering - she made her
club dance and cheer teams also! I'm very, very proud of her!! I love you,
Sunshine!!
Life is not without its trials. I know God is walking with me (with all of
us) through this journey and continues to send angels our way. As badly as
I want Alex's earthly body healed, I, too, want his and all of our soul's
healed. I hope I'm learning the lessons God wants me to learn. I'm
certainly working on my listening skills - but I really wish He would just
tell me outright!!
Together in Christ, Kelly
PRAY HARD
PRAY OFTEN
PRAISE GOD and
BELIEVE!!
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SUNDAY, MARCH 26, 2006
First off, what can I say? I type this through tears and gratitude of the
continued support and prayers of everyone during this journey but especially
during this past week. Friends and family who have told others (who don't
even know Alex) about him and the thoughts and prayers he has received from
complete strangers is truly a testament to God's love and grace. Most of
you have probably been able to tell I've had a tough time dealing with the
recent change in Alex's memory and bodily function. He is home from the
hospital and doing quite well although he demands constant attention. Of
which, I will gladly give. Norm is a tremendous help and I already miss
Nicole, who went back to California on Saturday.
The weekend was spent quietly at home. Norm and Brianna went to church
alone today. Alex and I stayed home. I have been able to get him on the
treadmill both Saturday and today for a leisurely 10 minute walk. He
doesn't complain anymore. With the changes in his memory come changes in
personality. Occasionally, something will get him riled up and I see
glimpses of the son I once knew. No matter - he knows me and when I tell
him how much I love him - he tells me he loves me too. That's enough for me
to go on right now.
Today I did something I rarely do. I searched the internet for additional
answers and treatments for brain cancer. I don't know if any of you have
ever Googled "anaplastic astrocytoma - Grade III" but if you have you
probably know why I try not to look things up on the internet. Although a
wealth of information, sometimes you don't know what to believe. And, a lot
of what you read about brain tumors and cancer isn't very positive. I did,
however, find a few new things that I will ask the doctors at Duke about.
Plus, I found a story about the clinical trial Alex is in and discovered the
idea for the combination of the two drugs (CPT-11 (chemo) and the Avastin)
was suggested by the husband of a woman who had a brain tumor. Norm said
they had told us this story at Duke, but I didn't recall it. The power of
love never ceases to amaze me. He wasn't a scientist or a doctor but out of
love researched everything he could to come up with this idea and now it's
helping many other people too.
Alex went with Norm today and helped clean out our vehicles and tonight we
all went out to Roy and Suzie's for dinner. Tomorrow he has speech and
occupational therapy in the morning. I'll call and set up another yoga
session or two!! Jessica (our yoga instructor) came up to the hospital to
see Alex. When she walked in I said, "look Alex, it's Jessica. She came up
to the hospital to give you a yoga class!" The look on his face was
priceless!!
I'm sorry I haven't journaled for a few days and I know this is getting a
bit lengthy, but I wanted to share the following with all of you. Michele's
friend, Kim, sent me a very inspirational e-mail regarding a song -
following is a bit of that e-mail. Kim writes - The song by Casting Crowns
and is called "Praise You In This Storm".
Below is from the CD insert:
The reason it was written: "If there ever were a test of our faith - if
there ever were a test of the motives of our worship - it is when a storm
rolls into our lives. We watched and prayed for a precious little girl
named Erin Edwards struggle with a deadly disease for several years. The
courage, the witness, and the worship of Erin's mother, Laurie inspired this
song. Sometimes God calms our storms. Sometimes He chooses to ride them
with us.
Scripture for the song: Romans 8:28, 2 Corinthians 4:16-18, Psalm 42:5,
Psalm 121:1-2, Job 1:20-21, and Daniel 3:16-18
Words to the song:
I was sure by now that You would have reached down and wiped our tears away.
Stepped in and saved the day but, once again, I say "Amen", and it's still
raining.
As the thunder rolls, I barely hear You whisper through the rain, "I'm with
you", And as Your mercy falls, I raise my hands and praise the God who
gives, and takes away.
I'll praise You in this storm, and I will lift my hands, for You are who You
are, no matter where I am, every tear I've cried, You hold in Your hand, You
never left my side, and though my heart is torn, I will praise You in this
storm.
I remember when I stumbled in the wind, You heard my cry, You raised me up
again, My strength is almost gone, How can I carry on, if I can't find You.
I lift my eyes unto the hills, where does my help come from?, my help comes
from the Lord, The Maker of Heaven and Earth.
Thank you, Kim!!
I close as always - asking for your prayers! I know God is listening - he's
riding the storm with us and I know he will calm it! I know that things
sometimes get worse before they get better. Life is fragile - handle with
prayer!!!
PRAY
- for healing for Alex
BELIEVE
- in miracles!!
Never give up - HOPE or FAITH
PRAISE GOD!!
THURSDAY, MARCH 23, 2006
Alex is still in the hospital. He will be released tomorrow morning - just
in time to go to chemo. He's feeling much better. Dr. Keppen, Dr. Moore
and Dr. Asfora all stopped by today. Because of the recent changes (his
memory getting worse and a few other symptoms), Dr. Keppen was wondering if
Alex's shunt was functioning properly. Dr. Asfora (Alex's neurosurgeon)
stopped by and checked things out and said it was working fine. He agreed
with Dr. Keppen that the recent turn of events were likely caused from the
radiation. We finally got to the bottom of the other problem Alex was
having (yes, I'm being vague) and he's feeling much better now.
Pastor Kevin (aka Rev Kev) stopped by for the healing service this
afternoon. It was very comforting.
Alex has had many visitors and I want to thank all of them for coming. I've
included a picture of Alex with his cousins - Peyton, Dalton and Teagan.
(Poor Teagan, Alex is pulling on her ears. I didn't notice it until I
downloaded the pictures!)
Nicole is staying with him in the hospital again tonight (bless her heart!)
I'm exhausted so this entry will be brief. I know all of you are praying
hard for Alex - THANK YOU!! I know God, The Great Physician, is listening!!
GOD BLESS!!
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WEDNESDAY, MARCH 22, 2006
Alex was admitted to the hospital today. He was having some problems and we
had to take him to the emergency room. We hoped they were only going to
have to hold him overnight for observation (that's why I didn't call anyone)
however, when I left this evening he had another incident (they aren't
seizures) so I'm assuming they will be running tests tomorrow and he may not
get to come home as planned. Nicole is staying overnight at the hospital
with him which makes me feel better about coming home for the night. (God
must instruct her when to come home (from California), once again, her
timing was perfect. I couldn't have made it through this day without her -
Thank you, Nicole - I love you.)
The MRI he had last night was read by both the doctors at Sioux Valley
Hospital and the doctors at Duke and both came to the same conclusion - that
everything is "stable" - meaning the tumor hasn't grown or gotten any
smaller. So that leads us to the question of why all the problems of late.
Norm thought it might be side effects from the radiation and Dr. Keppen
agreed. Radiation side effects can take anywhere from 6 months to 3 years
after treatment before they present themselves. Dr. Keppen told me that
doing chemo during radiation can enhance the side effects later on. Alex
had chemo during radiation. I also questioned Dr. Keppen about other
patients with this type of memory loss and what the prognosis was and if he
felt Alex may be experiencing "chemo brain". He stated that the type of
chemo Alex is receiving usually doesn't cause chemo brain and that most of
Alex's memory problems are the placement of the tumor and perhaps a side
effect of the radiation. He also said that over a very long period of time,
he has seen some improvement in memory in patients such as Alex. I told him
to just give me the time, I'll work on the memory!!
I spoke with the nurse at Duke again today. They still want Alex to keep
his appointment in two weeks if he is able to travel. At this point in
time, he's not. So we will play it by ear and see how things are at that
time.
At my request, Rev Kev is going to perform a healing service with oils for
Alex tomorrow. (I'm not sure what you actually call it as it's not a common
Methodist practice - but when I asked, Rev Kev said he would do it!) Please
keep Alex in your prayers!!
My sister, Pam, gave me a book early on in Alex's illness. The book
states - "Modern scientific research sustains the belief that there is a
strong relationship between faith and wellness - between our bodies and our
beliefs." So....keep believing. Thoughts are things and Alex is having a
little difficulty thinking these days so let's do it for him!! I just want
to thank all of you who read this website faithfully and for all the
thoughts and prayers for Alex and our family!! Pray, too, for the doctors,
nurses and research people who deal with cancer every day.
FAITH, HOPE, BELIEVE, MIRACLES - some of my favorite words!!
THANK YOU DENE' AND KRIS FOR THE FLOWERS!
TUESDAY, MARCH 21, 2006
I spoke with Alex's case nurse at Duke this morning. Because of protocol
for the clinical trial, Alex will need to have another MRI in two weeks and
she still wants us to come there for his upcoming appointment (which I
changed to April 6th.) However, I feel that is yet to be determined, Alex's
symptoms have been improving (not his memory) but I really don't want to
travel with him at this time. Alex is scheduled for an MRI this afternoon.
We will send this MRI overnight to Duke for reading, they should have it in
the morning so hopefully we'll know something before noon. (I wrote this
late this afternoon - the MRI went well and is currently on it's way to
Duke!!)
Norm and I have also decided to get an additional opinion on Alex's
condition and will be sending this MRI on to another facility. We have
several in mind and at this time have not decided on which one to send it
to.
Today was kind of a quiet day. Earlier this afternoon, Alex went with me
and hung out with Ralynn while I spent some time with Rev Kev at our church.
Thank you so much, Kevin. I don't think it's uncommon for anyone to
reexamine their faith during difficult times. I'm no exception. I know
this journey has brought me closer to God, but that doesn't mean it hasn't
been difficult. When Alex first got sick, I never asked why. I have always
said "I know God didn't do this" but as the journey continues and I watch
what this disease is doing to my son, my faith has been tested. Some days I
feel like I'm only holding on by a thread. I want to know why. Why Alex?
Why this? I want to know why God doesn't intervene. I'm not in denial of
Alex's illness and I know the severity. Don't get me wrong, I haven't lost
faith or hope. But the changes these past few weeks have shook me to my
very core. I'm scared. I'm human. I don't want to lose my son. But no
matter what, I still BELIEVE in miracles!!
Alex's buddy, Callen, stopped over for a visit this evening. (See picture -
nice shirt, Callen!) Callen is on his way to Virginia - he is in the Army
Guard. He will be learning the mechanics of Black Hawk helicopters and
after will be going to pilot school. I pray we are out of Iraq before he
becomes a pilot!! Alex always wanted to fly helicopters in the Air Force
but apparently too many concerts and a loud car stereo did a number on his
hearing and he flunked the hearing test twice!
Alex seems to have developed a bit of cold. I pray it doesn't get any
worse. His short term memory is not any better either and I have started
noticing a few slips in his long term memory now too. Today I asked him
where he was born and first he said Minnesota and then admitted he couldn't
remember (he was born at Sioux Valley Hospital in Sioux Falls). I hadn't
asked him any questions regarding his long term memory before, so as you can
imagine, this upset me quite a bit. I try to never let Alex see me upset or
cry, although that's hard at times. As bad as his memory loss is, I do have
to consider it a blessing at times as he doesn't remember a lot of what he's
been going through lately.
Before I close, I have to say THANK YOU for the beautiful flowers. They
were sent to me anonymously (although I have an idea who may have sent
them!) and came at just the right time!! Thank you so much!!
As always, please pray hard for Alex. Pray for healing and good news from
this MRI!!
BELIEVE!!
GOD BLESS!!
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MONDAY, MARCH 20, 2006
Norm and Alex made it home from the ranch this evening. Alex is doing a
little better (not his memory but some of his other symptoms have improved.)
Not sure if it is the Ritalin or just getting off the steroids. Either way,
he has an MRI tomorrow and hopefully we'll know more on Wednesday. I left
Alex's case nurse at Duke a message today inquiring if we could maybe skip
the upcoming appointment (in two weeks - have the dr's in Sioux Falls do it)
and also if he was going to need another MRI in two weeks due to the
requirements of the clinical trial. I didn't hear back from her today but
I'm sure she'll give me a call tomorrow.
Jen G. bought Nicole and I lunch today! Thanks Jen! After lunch, Nicole
and I ran an errand and dropped some practice clothes off at school for Bri
(she's trying out for the high school cheer team!) then I went and had a
massage. The rest of the evening was spent quietly at home.
I receive a daily devotion via e-mail from the Joel Osteen ministries. On
Friday, it was about power in unity. He quoted this, "Ephesians 4:13, "We
need to come together in the unity of faith." There's great power in unity!"
For me, there's great power in unity and prayer. Together, I know God is
hearing the many prayers all of you are sending His way for Alex. As
always, keep praying!! God Bless!!
and don't stop BELIEVING in MIRACLES!
SUNDAY, MARCH 19, 2006
(March 18th) HAPPY 50th BIRTHDAY TO MY SISTER,
KIM!!
Things haven't been going very well. On Friday, while Alex had chemo, Norm
and I spoke to Dr. Keppen (Alex's oncologist) and because of the recent
changes he suggested we move the MRI that was scheduled for March 31st up to
next week. It is now scheduled for this Tuesday. (His next appointment
with Duke will be the first week in April - they made a scheduling error and
I haven't called to correct it yet - better get on that!) For Alex's
privacy and dignity, I don't go into the many details of a "bad" day. But I
can tell you it totally breaks my heart to see my son go through this.
Although he shows me strength and determination and handles all of this with
such grace, I have seen a few glimpses of a young man who is hurting beyond
imagination. This is not what a 23 year old should be doing. Some days I
get so frustrated with all of this. I know God put us on this earth with
everything we need - I truly believe that. I believe there is a cure for
this dreadful disease. Please pray for one, pray for Alex and the many
others whose lives have been turned upside down by this horrible disease. I
think most of you know by now how very grateful I am for all of your
thoughts and prayers. PRAY HARD!!
Alex and Norm went to the ranch for the weekend. Although, Norm thought
they probably could have made it home this evening (they are on the edge of
the winter storm hitting the western part of the state) he chose to stay
tonight as Alex has been quite sick and fatigued today. I will call and
cancel his speech and occupational therapy for tomorrow and pray they make
it home safely later tomorrow.
Heather, Brielle, Evan and Kaye drove out for a visit on Saturday. Kim and
Mic were in town too, so we were all able to get together for lunch to help
Kim celebrate turning 50!! Sunday, the girls and I went to church and
Brianna had dance and cheer tryouts in the afternoon (for her club teams.)
We don't know the results yet but no matter the outcome, I want her to know
how
very proud I am of her.
Tomorrow is a new day, full of hope and love. Remember - PRAY, HAVE FAITH
AND BELIEVE. GOD IS LISTENING!!
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THURSDAY, MARCH 16, 2006 (HAPPY 1ST BIRTHDAY ELLA!!)
Alex had therapy this morning. Then Michele (our awesome website designer),
joined Alex, Nicole and myself for lunch at Olive Garden. After making a
stop, we headed home where Nicole's friend, Dana, stopped by for a visit.
Alex, Nicole and Dana played Tri Bond while I ran Brianna to tumbling and
technique class in Sioux Falls.
The rest of the day was pretty uneventful. Tomorrow Alex has chemo.
Afterwards, him and Norm are heading to the ranch for the weekend. The
girls are staying here.
As I'm journaling, Alex is sitting next to me playing solitaire and humming
(sometimes singing) the theme from Gilligan's Island. Every once in a while
he stops to make some smart alick comment to me and slug me in the arm. (Can
you see me smiling?!)
Through this journey I have met many wonderful people also going through the
trials and tribulations of cancer. Either themselves or as a caregiver.
There is a special bond between those who are affected by cancer. Many of
them have helped me (and Alex) more than they could know (Angela - this
would be you!! Notice she has "Angel" in her name!). I want to thank all
of them and ask that you keep them in your prayers also.
This past week and a half have been especially difficult for Alex and our
family. I just want to thank you for all your continued prayers! GOD
BLESS!
HOPE
FAITH
PRAYER
MIRACLES
BELIEVE!!!
WEDNESDAY, MARCH 15, 2006
I heard from Duke today. Dr. Raynor, the neuropsychologist, and I played
phone tag and finally connected via e-mail. She thinks Alex's sudden
increase in short term memory loss is due to late effects from the
radiation. She is recommending that we put Alex on Ritalin. Ritalin is a
stimulant used in ADD treatment. It helps speed neural impulses along to
help compensate for the radiation damage. Dr. Raynor wanted to start with
the Ritalin and if we don't see any improvement then possibly try one of the
Alzheimer's drugs currently available. Since Ritalin is a narcotic, she
will have to mail the prescription, she can't call it into the pharmacy so
it will be a few days before we can get him started on it. In the meantime,
we've discontinued using the Decadron - YEAH!! I can't believe what side
effects that stuff has - even in the short time we put him back on it. I bet
you can't tell - I REALLY don't like that drug.
It is soooo nice to be back home. We had a few problems today but overall
it was a good day. Tonight, before I started journaling, Alex and I watched
a beautiful short video my cousin Dene' e-mailed me called "May you be
blessed movie." There was a part in the movie that referred to grains of
sand in the world. I turned to Alex and said, "do you remember when I used
to tell you I loved you more than there are grains of sand on the earth and
stars in the sky?" (we used to try to outdo each other with the biggest
number of items we could think of.) He turned to me with tears in his eyes
and said "no, but I will now." And I honestly think he will. Thank you, Dene' - it was awesome!
Nicole's plane was delayed 7 hours today. She had to sit in the Denver
airport - traveling sucks!! However, when I called her she wasn't feeling
much pain!! I'm so glad to have her home!!
As always, keep Alex in your prayers. God is the Great Physician!! He is
listening!!
PRAY, HAVE FAITH AND BELIEVE!! MIRACLES HAPPEN!
GOD BLESS!!
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TUESDAY, MARCH 14, 2006
I arrived home from Minneapolis early this evening. The weather changed our
plans - we got snowed in - so Penny and I spent a couple of extra days
there. I missed everyone, especially Alex. I think the cat was the only one
who missed me! :-) Norm said he really hasn't noticed any difference in
Alex's memory since starting the steroids, so we decided to stop them today.
I will call Duke tomorrow and let them know and also see if the nurse had an
opportunity to talk to the neuropsychologist regarding any other medications
(specifically Alzheimer's meds) that we may try.
It sounds like everyone kept busy while I was gone. Saturday was spent
doing odd jobs and errands. After church on Sunday, Alex went with his dad
(Tim) to the high school state championship hockey game in Watertown
(Mitchell won!! Congrats!) Monday, Alex had therapy and today was spent at
home. The Decadron has really taken it's toll with it's nasty side effects
already. Although I was really hoping it would help, since it doesn't
appear to have, I'm glad he's going off.
Nicole is coming home tomorrow for a visit. She'll be here about 10 days.
I'm looking forward to her coming and hope the weather allows her to make it
here ok. I understand we are suppose to get another round of snow tomorrow.
Let's hope it isn't as bad as the first. I think the Minneapolis area and
south must have gotten hit a lot harder than here. That's ok - they can
have it again! I'm home now!!
I want to take a brief moment to congratulate Brianna. Last night was her
high school awards banquet for dance - she received her first high school
letter!! (Now we have to buy a letterman's jacket!) I feel bad I wasn't
here to see her get her letter but I want her to know how very proud I am of
her. Her team practiced three days a week - two (sometimes three) of those
practices were before school at 6:15 a.m. - this in addition to her club
team practices made for a very busy girl!! I love you, Sunshine!!
I'm going to go spend some time with my family but as always, I ask that you
keep Alex in your prayers. I, too, am proud of his courage and strength
through this. Before I left I told him he had to fight hard. He replied
"I'm really not too worried!" Have faith and continue to believe in
miracles!! God is with us.
GOD BLESS AND BELIEVE!!
FRIDAY,
MARCH 10, 2006 (HAPPY BIRTHDAY MIC!)
Duke called me back this afternoon. They suggested that Alex go back on the
Decadron (steroids) at least for a short while. (AAGGGGHHHHH!!!!!!!!! I
hate that stuff. I know it works for what it has to but the side effects
are horrible.) They aren't sure what could be causing this sudden change.
It could be swelling from the chemo, it could be the tumor growing, or it
could be permanent damage from the radiation (she really didn't think it was
the latter as this usually doesn't show up for 6 months to 3 years after
radiation.) The nurse suggested we try the Decadron for 3 or 4 days and if
it is swelling, we should notice a difference during that time. If we don't
notice any change, he will not have been on the steroids long enough to have
to taper off of them and we could simply stop them at that time. She is
also going to consult with the neuro psychologist that did Alex's testing to
see if she could recommend any Alzheimer's medication that may help with his
memory. That doctor will call me back on Monday. Although not what I
wanted to hear, the nurse was very helpful and sympathetic as I got a little
emotional while on the phone with her today. At this point, I don't care if
the short term memory loss is permanent, if we can just get rid of the
tumor/cancer.
Norm, Alex and I went and looked at a few houses today. Just to rule out
anything immediately available that we might like before we start to build.
We didn't find anything. But it was a beautiful day to be out and about.
Believe it or not, it was much nicer 17 years ago today. It was 70 degrees
and sunny. It was the day that a very proud 6 year old boy walked his
mother down the aisle. I remember politely telling my father I was sorry
but there was another man in my life who was going to do the job. Norm and
I have been together for almost 21 years, but we've only been married 17.
Only, haha!! Although, not without it's challenges, Norm and I have been
very blessed with 4 wonderful children and a successful company during that
time. Him and I are going out tonight, something we rarely do. (21 years
together - we've never been without children.)
I'm leaving for Minneapolis early tomorrow morning and returning on Sunday.
I pray the weather is good, it's suppose to snow on Sunday. I won't be
journaling again until Monday. I hope everyone has a wonderful weekend.
Please remember to pray for Alex, for a better week next week.
PRAY and BELIEVE!!!
THURSDAY, MARCH 9, 2006
(Happy Birthday Jen
F.)
We had a very busy day today. Alex woke up early - on his own. After
breakfast, our first stop was yoga, then to therapy, then over for lab work
and scheduling his MRI. We then ran back to Brandon to pick Bri up from
school. After dropping her off at home, I took Alex back into Sioux Falls
so he could spend time with Dusty and Megan. Dusty and Alex got fitted for
tuxes for Dusty and Megan's wedding and then they all went out to the
sportsman's show at the arena. Norm and I met up with them there later.
Although a long day, Alex did very well.
I spoke with the occupational therapist and the nurses at the infusion
center today about Alex's memory. They all agreed it seemed worse this past
week so I did contact Duke this afternoon. It was rather late when I called
so I left a message for the nurse assigned to Alex's case and am expecting a
call back tomorrow. I am planning on a quick trip to Minneapolis this
weekend with a friend (business - not pleasure) but will journal Duke's
recommendations before I leave.
It's been a tough week. I appreciate all your thoughts and prayers. I
still believe Alex will beat this and will never, ever give up hope. I have
faith and know that God has this all under control!
PRAY, THINK GOOD THOUGHTS AND BELIEVE!!
GOD BLESS ALL OF YOU!
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WEDNESDAY, MARCH 8, 2006
Norm and Alex returned from the ranch this evening. Norm said Alex didn't
do much, he, too, has really noticed Alex's memory decline. Alex didn't
seem as chipper when he got home tonight. I'm hoping he's just tired.
Tomorrow he has labs (we had to change them) and therapy again so hopefully
he'll fall asleep early. I'm really worried. Please pray hard that this is
just temporary.
I'll be brief tonight. I'm going to go spend time with Alex, even if it's
just watching TV. Keep him in your prayers!!
GOD BLESS AND BELIEVE. PRAY FOR A MIRACLE!
TUESDAY, MARCH 7, 2006
Therapy went well today. They don't feel there is much they can do for Alex
at this point but we've decided to continue with it as any brain stimulation
is helpful. Today after lunch I drilled him all the way home about what he
had and where we ate. Later at home I asked him again and it took a minute
but he did remember. Repetition seems to be the key. I will do whatever it
takes and continually look for different things and ideas that work. If any
of you have any suggestions, I'm very open to any ideas.
He was a little tired today but overall felt pretty good. I still think
that is totally amazing. I have talked with others on this chemo who have
had to actually take breaks from it because their blood count drops or they
are too sick. I'm learning to count my blessings wherever I can find them.
Alex and Norm decided to go out to the ranch for a few days. They still have
a little finish work yet on the house. I would love to go for a weekend as I
haven't seen the updates to the house and we have puppies. They are three
weeks old. Pure bred labs and they are for sale so if you know of anyone
who wants a puppy, let me know. There is another litter due the first part
of May (Brianna's dog, Rizzo, is expecting) if the timing isn't right now.
The house is quiet tonight without the guys. Bri's at practice and I have a
few moments to myself. As always, please keep Alex in your prayers.
Ultimately, it's all in God's hands!
GOD BLESS!!
BELIEVE!
MONDAY, MARCH 6, 2006
(HAPPY BIRTHDAY PAM!)
I let Alex sleep till noon today. I turned the Price is Right on and that
didn't wake him up so I knew he was really tired. I was hoping the extra
rest would help his memory some. I'm not really sure it did. After lunch,
him and I went for a walk. Then I made him play solitaire on the computer
for a while before going with me to pick Brianna up from school and running
a few errands. Despite his memory problems, he's been in a really good mood
the past few days. That and my feeling better has lifted my mood too. I
wasn't even able to laugh at some of the things he does (you have to laugh -
it's part of what gets you through some days - he even laughs at himself -
they say laughter is good medicine!) Like this new singing/humming thing.
Yesterday, Hark the Herald Angels Sing was his favored tune. Today, it was
the theme song from the Smurf's (where he picked that up I'll never know)
but it did bring several smiles to my face through out the day. Also, the
new neatness quirk he's acquired is any mother's dream. Except for the fact
he'll fold dirty clothes and put them with the clean ones so Norm and I have
to be sure to snag the dirty ones once he takes them off.
Tomorrow he starts occupational and speech therapy. He'll miss yoga, I'm
going without him. He'll be able to go on Thursday. If the weather is nice
again, I'll try to get him out for another walk. I really think the more
active we keep him the better he does with his memory.
You can't imagine what it's like watching your child go through this. I so
badly want to take it from him. I'll never understand why it had to happen
to Alex, it's so unfair. He was just beginning his life. He always wanted
to move away from Sioux Falls and after serving in the military realized
what a great place it was to raise a family and was so anxious to get back
home. I was so happy as he would be close. He would raise his family here.
Now it's all on hold. Each day is a precious gift from God and I try to
make the most of each and every one I'm able to share with him now. Don't
ever take your children for granted. Love them with all your hearts,
remember they too are a gift from God. Be thankful for health, family and
friends. Ok, I didn't mean to lecture - I couldn't help it. I thank God
for all of you - thanks for being there for Alex and our family. And
always, remember to pray. Pray hard!!
BELIEVE, PRAY, FAITH, MIRACLES.
Alicia - thank you for sharing this verse with me!! It's perfect!
So do not fear, for I am with you; do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous
right hand.
(Isaiah 41:10)
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SUNDAY, MARCH 5, 2006
I'm back! (Sorry I haven't journaled lately. I think I'm finally recovered
from that flu!!) Alex had chemo on Friday and as usual he's tolerated it
with mild side effects so far. Brianna had her last dance competition of
the season Saturday in Huron and while her and I were away at that, Norm and
Alex took in the Skyforce game with floor seats - tickets compliments of Tom
B. - THANKS for the tickets Tom! Sunday we went to church and after Alex
helped Norm run errands, clean out vehicles and move some stuff to the
storage units.
I've been very concerned about Alex's memory this past week. It seems to
have gotten worse, although today wasn't too bad. I talked to Norm about
contacting Duke, but will probably wait to see how he is after therapy this
week. In addition, he's started humming/singing quite a lot and his
fidgeting seems to be getting worse. For the most part now, Alex doesn't
initiate conversation. Occasionally, he'll ask a question or two, but
mostly will just answer questions asked of him. I know some of this could
be caused by the chemo, but it scares me nonetheless. All in all it's been a
tough week. Please continue to keep Alex in your prayers. Although we've
had good reports, he still has a long way to go. I know he can make it!!
With your help and God's help!!
KEEP PRAYING!
You need to persevere so that when you have done the will of God, you will
receive what he has promised. Hebrews 10:36 (NIV)
BELIEVE!
THURSDAY, MARCH 2, 2006
Alex got out of yoga again!! This morning he had initial consultation
appointments for speech therapy, occupational therapy and physical therapy.
(Norm and I had a bit of a communication gap and I found out yesterday that
Dr. Keppen's office had set these up last week (if you recall my
persistence) someone forgot to tell me - I was in Minneapolis - in Norm's
defense, he was sick.) It was determined that Alex would benefit from the
occupational and speech therapy but that he would not need physical therapy.
Next week he will begin twice weekly appointments for each at the North
Center. I really think this will help him with his thinking/memory in
addition to getting him out of the house. I thank God I don't have to work
outside the home and that Norm and I are able to take care of him and get
him to all his appointments. I think about others in this situation who
aren't as fortunate and really wonder how they do it. The stress is
difficult enough without factoring in working and other financial hardships.
My heart and prayers go out to the many other cancer patients out there.
The past few days have been difficult emotionally for me. I sensed it in
Alex too. We talked about it and he's just really tired of all of this. He
can't wait for it to be over and get on with life as he knew it. I'm glad
he thinks that way but I know that life will never be what we knew it. And
that's not all bad. We've all grown from this, we've changed. If we
haven't, it will have been in vain.
After Alex's appointments, I dropped him off at Norm's office where he
helped out all afternoon. Tonight, we were able to relax as a family (we had
NOTHING going on!) at home. Everyone is waiting for me so I'll close but
not without asking, once again, for all of your thoughts and prayers for
Alex's healing.
FAITH, HOPE, PRAY, BELIEVE, MIRACLES!!
GOD BLESS
WEDNESDAY, MARCH 1, 2006
(HAPPY ANNIVERSARY PAM AND GLENN!)
I got Alex up early today, we both had appointments in Sioux Falls. After
our appointments, we met Norm for lunch at the Ground Round. Alex went with
Norm and worked at the office this afternoon. I ran errands and took Bri to
the orthodontist. We all met up for dinner at home and then to the Ash
Wednesday service at the church we used to attend in Sioux Falls. (They are
the host church for our Lenten services this year.) It was good to see so
many familiar faces and to hear all the well wishes and prayers being sent
our way. The service was a little tough for me as Pastor Freed reminded us
that our time here on earth is limited and our days are numbered. I know
this, but it hit kind of hard tonight. I enjoyed the service as Brianna
bopped to the back of the church to sit with friends and Alex sat between
Norm and I and sang each hymn like I had never heard him sing before. I
fought to hold tears back the entire night (and the pew still from Alex's
twitching leg!) When it was time for the imposition of the ashes, Pastor
Freed commented that "these aren't miracle ashes merely plain ashes." Yet
to me, they were miracle ashes. Ashes that represent a hope, a promise,
forgiveness and life everlasting with Jesus Christ. A life free from
cancer, pain, worry and death. Today, one of the nurses said to me "I'm not
sure if it's harder having a son die (which she has) or watching your son
die." The comment haunted me all day until tonight when I realized - I'm
not watching him die - I'm watching him LIVE!!!!! And live we shall do,
while we can and enjoy every minute!!
So, here's to life!! And all your prayers asking Jesus for a longer,
wonderful life for Alex!! Please keep them coming!
THANK YOU!!
BELIEVE, there are miracles in ashes!!!
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TUESDAY, FEBRUARY 28, 2006
What a party!! I can't thank all of you enough for coming, especially on
such short notice. It was a success and Alex had a great time. Thank you
to my sisters for ALL coming and traveling such a long way for a short time.
It meant so much to Alex and myself!
Alex has had a good week. He hasn't gotten sick from chemo at all and we
have backed off on a lot of the meds he'd been taking to control the
symptoms. YEAH!! This afternoon he attended a funeral with Norm and I. (An
old friend of ours passed away unexpectedly last week. He was only 44. Way
too young. My thoughts and prayers are with his family.) After, Alex went
with me for lab work for a change!! Then off to get the car washed and a
little drive since the weather was so beautiful! This evening was spent
sitting at home (Bri didn't have practice!! WooHoo!!) and watching TV.
However, I will add, I'm going through Olympic withdrawal!!
I'll be short tonight. I'll let the pictures speak for themselves!!
Remember to keep praying!!
GOD BLESS - BELIEVE IN MIRACLES - BELIEVE IN ALEX!!
HAPPY 23rd BIRTHDAY ALEX!
MONDAY, FEBRUARY 27, 2006
Happy 13th Birthday Paul! (Alex's little brother!!)
It's Alex's birthday!! And, he remembered it was his birthday so I know it's going to be a great day. I apologize at the short notice of Alex's party this evening.
EVERYONE is invited - I hope you can stop by - at least for a little while!! (I know there are many of you who read the journal regularly and have never met Alex - we'd
love for you to stop by and say hi!) Drinks are available and we'll have hor'deurves and cake.
The festivities get under way at 7:00 at Tailgators (1013 N. Splitrock Blvd in
Brandon, just off the I-90 exit.)
Hope to see you there!
It sounds like Alex did well while Bri and I were gone. Last Thursday, Rev Kev took him bowling (I didn't find out who won) and Friday's chemo was uneventful. The weekend was
spent at the ranch. Alex is usually good for a little work on Saturday since the steroids he receives with chemo (on Friday) pump him up for a couple days. Just to let all you
ladies out there know - he does windows!! He washed windows for Norm on Saturday and ran a few errands. Norm said he was a little tired on Sunday and slept quite a bit, however,
he was still up when Bri and I got home around 11:30 last night and up early again this morning.
I wanted to thank everyone for the birthday wishes sent my way. Gee, I'm not sure how you all knew.......huh, Michele??!! Amazingly, when I was able to get back on a computer
(last night at around 1:00 a.m.) there were no links or anything from the website - they magically disappeared!! Thanks for thinking of me!! The day started out good, Bri and I
traveled with friends to Minneapolis for the cheer and dance competition and I did ok until late afternoon. It was then that I started to get sick, very sick. I spent that night
and the better part of Friday holed up in the hotel room. I didn't start feeling better until late Sunday afternoon. Fortunately, I had great friends and my sister, Kim, who
spent the weekend with us (thank you so much for coming!) to help with Brianna. I am truly blessed and it showed again this weekend. Away from home, sick and still wonderful
friends and family to help me out. I want to congratulation all the CCDA teams and coaches for a great weekend. Bri's teams did awesome. Her cheer team took second place but
qualified for the grand champion finals. They again placed second (2 points from grand champion) out of 8 teams. Although disappointed, they did awesome - the best I'd seen
them all year - it was a tough competition and they should be very proud. Her dance team took FIRST in all three of their routines and also qualified for the grand champion
finals for dance. They, too, took second - again 2 points from grand champion (out of the 4 qualifying teams.) They were awesome. Her high school team did a great job too
but did not qualify for the grand champion finals. It was a long three days of competitions and I'm sure the girls are very tired today.
Once again, I hope all of you can stop by for a few minutes this evening and wish Alex a happy birthday. I can hardly believe he's 23! The years have certainly flown by. We've
been so very blessed. God brought him into this world with a fighting spirit knowing he would need it. Early on in my journaling, I mentioned how Alex was born 6 weeks premature
weighing in at only 5 lbs 3 oz. His lungs were not yet developed and he spent the first weeks of his life in the Intensive Care Nursery at Sioux Valley Hospital. He was over a
week old before I even got to hold him in my arms for the first time. Now he can (and does) pick me up!!
Please come and celebrate Alex's life - all 23 years of it (and counting!!)
PRAY, BELIEVE, GOD IS LISTENING!
WEDNESDAY, FEBRUARY 22, 2006
(Tomorrow FEBRUARY 23rd - HAPPY BIRTHDAY
MEGAN!!)
What a day!! After getting Brianna up and going at 5:20 a.m. I took a NAP!!
Then Alex and I went to yoga - I wasn't going to go since I had so much to
do but Alex talked me into it!! -- Can you believe that? After yoga, I took
him to get his lab work done for the week. Then we had lunch and did some
grocery shopping at Hy-Vee. I spoke with the nurses and finally got the
dr's office to start checking into the recommendations that Duke suggested
after Alex's neuropsychological testing. They thought it might be helpful
to get Alex into an outpatient cognitive rehab program and speech
pathologist to help his memory and thinking. I'm not sure what Sioux Falls
has to offer in connection with these programs and I didn't even know
where/how to start looking. I had asked the dr's office several times to no
avail. So I complained a bit today and finally got the ball rolling.
Tomorrow morning Brianna and I leave for UPA (a national/dance cheer
competition in Minneapolis) so I won't be journaling the next few days. The
guys are planning on going to the ranch.
Just an FYI - Monday, February 27th is Alex's 23rd birthday!! I'm thinking
of having a small get together of friends (and any family who can come) at
Tailgater's (here in Brandon). It will be a surprise. Ok, so why am I
journaling about it if it's a surprise? Even if Alex reads this,
unfortunately, he won't remember it. But anyway - please feel free to send
birthday wishes his way or stop by Tailgaters to wish him well. I'll have
the party room and time in the next journal entry. That day is also Alex's
little brother, Paul's birthday. Everyone in our family shares a birthday
with someone else in the family. How ironic is that? Alex with his brother
Paul, Nicole with her uncle David (Norm's brother), Brianna with her aunt
Kaye (my sister), Chris with his stepfather, Norm with his half sister Jill
and me with my niece Megan (Roy's daughter).
Alex and I saw the movie, Freedomland, when we were in North Carolina.
During the movie, there was a part when Morgan Freeman's character was
talking to another character and he told her to "let go and let God." I
knew I had heard that somewhere before but for some reason it really hit me
during the movie. I pray everyday and sometimes ask God to take this from
me, from Alex. I'm not really sure if I truly let go, but I'm working on
it!! I know He'll take care of it if I just would! So......please continue
to keep Alex in your prayers and.....
BELIEVE, BELIEVE, BELIEVE!
...LET GO AND LET GOD!!
TUESDAY, FEBRUARY 21, 2006
We're home!!! It was a good trip. Alex and I had a great time together.
It was a very special time for me to spend some time alone with him. In
addition to relaxing, we laughed a lot. And, as Michele posted for me, the
doctor visit and reading of the MRI went well. They had a little trouble
with the cd the MRI was on and Alex and I ended up sitting in the small exam
room for three hours. However, when they finally got it to work they
reported there was a slight improvement in the looks of this MRI as compared
to the previous MRI. One of the tumors is almost gone. The main tumor is
still there. I was unaware there were TWO tumors and asked about this
immediately!! Apparently there was an abnormal spot in the left frontal
lobe of Alex's brain they have been watching, but they said it was barely
visible and almost gone. I asked Norm about this and he said he was aware
of it - somewhere along the line I missed that. That's a pretty big thing
to miss. I knew there was another area of concern but I believed it was the
same tumor that had been "cut in two" (so to speak) after his surgery. The
main tumor showed only slight improvement, but they were pleased since last
time it had improved so much. We are headed in the right direction! I was
hoping for a giant leap, but I'll take baby steps!
I asked the doctor if this was the best, most aggressive way to treat this.
She said "absolutely." I also asked how the other patients in this clinical
trial were doing and she informed me they were having very impressive
results from this drug combination and were quite pleased. Good to hear!!
My next concern was in regard to Alex's short term memory loss. Again, I
was told it may or may not ever come back (the location of the tumor is the
biggest reason.) She also told me that if you're going to have some sort of
disability associated with a brain tumor (many patients have physical
disabilities) that this one was the easiest to compensate for. She included
that they really aren't sure of the effect the combination of the chemo and
Avastin has on memory and that too could be part of his problem (which would
improve once off the drugs.) However, today at the airport, Alex and I
checked our luggage curbside then proceeded in through security and headed
to the gate our plane was to leave from. As we were walking, (now mind you
at least 10 minutes had passed) Alex said "didn't he say Gate C22?" I
immediately stopped and looked at him. He remembered the gate number. That
was huge. I know he had a "bye" week from chemo last week so maybe the chemo
is contributing to it. It gives me hope!! Him and I did talk about how
much the short term memory loss frustrates him. I can only imagine - I know
how it is when I walk in a room and can't remember what I came in there for.
The doctor's also told Alex they would like to see him get a bit more
exercise. They recommended walking at least three days a week - the one
hour of yoga just wasn't cutting it! (We found that out when we had to
"run" through O'Hare to catch our next plane - we had quite a trip to North
Carolina. Delayed flights and lost luggage - neither one of our bags made
it to there until the next day.) Anyway, it should be interesting getting
him on the treadmill!
We came home to Norm being quite sick. Much to my dismay as I have a quite
a bit to do before Thursday. I haven't even unpacked or done any laundry
yet. I need to get going because Brianna and I are leaving Thursday
morning. We are headed to Minneapolis for the last big competition of the
year (she has a state competition in Huron next weekend - high school team
only.) We will return on Sunday, but just a fore warning that I won't be
journaling again for a few days. I'm assuming Alex and Norm will head to
the ranch while we're gone.
I've had plenty of time to think about this journal entry and had ton's of
things on my mind that I wanted to include. Naturally, I sat and watched
the Olympics again and it's quite late and I can't think of them. I've been
up since 4:15 a.m., although surprisingly not too tired (it's currently
11:50 p.m.!) I will conclude for the evening but not before I sincerely
thank each and everyone of you for your continued support and prayers for
Alex. I wasn't even anxious while waiting to hear the MRI results. I knew
in my heart we would get good news. God, the GREAT PHYSICIAN, is looking
out for Alex. He has bigger plans for my "ALEXANDER THE GREAT!!"
As always, keep Alex in your prayers and remember to thank God for all he
has done and the good news!!
KEEP BELIEVING - IT'S WORKING!!! FAITH,
HOPE,
MIRACLES!!!
FRIDAY, FEBRUARY 17, 2006
The MRI went well today. Of course we won't know the results until Monday. Afterwards, Alex and I ran a few errands in Sioux Falls and grabbed lunch.
After returning home, he napped most of the afternoon away while I worked on the computer. This evening we attended a going away party for Rev Kev and Tracy's son,
Eric, as he is leaving Monday for Iraq. Eric is also part of the South Dakota Air National Guard. Please keep Eric and his family in your prayers.
We thank you and
pray for your safe return, Eric! Remember to keep all the soldiers and their families in your prayers as they risk their lives for our freedom!
It was always my fear
that Alex would get activated/deployed. He wanted to go. Now he's fighting a different battle - cancer. Although a tough fight - he will win!!
Alex and I leave tomorrow for North Carolina. Because I won't be journaling until Monday,
I wanted to wish my mother a happy birthday. Her birthday is tomorrow -
February 18th!! Happy Birthday Mom. She is currently recovering from knee surgery in Rochester. Pray for her speedy recovery.
Again, I want to thank you all for your prayers and continued support. As I mentioned yesterday, life goes on and I know so many of you have hectic schedules and are
very busy, yet each of you continue to check the website and keep Alex in your prayers. THANK YOU, thank you from the bottom of a mother's heart. I couldn't ask for more.
And because of this love and support, I know that we are going to get GREAT news on Monday!!
Tune in again Monday for the MRI report from DUKE! PRAY & BELIEVE!!!
"No matter how difficult the challenge, when we spread our wings of faith and allow the winds of God's spirit to lift us, no obstacle is too great to overcome."
Roy Lessin
THURSDAY, FEBRUARY 16, 2006
(HAPPY BIRTHDAY ADAM!)
Alex had a pretty busy day today. After soda's and pool with Rev Kev in the
afternoon, he went out with Adam and friends for Adam's birthday this
evening. I know he enjoys getting out with people other than Norm and
myself. He was feeling good today.
Alex and I fly out on Saturday. As luck would have it, I checked the
weather forecast for the Raleigh/Durham area while we are there and of
course it's nice now but won't be when we get there. Does that sound
familiar?? Oh well, it will be warmer than here!!
I know I'm always asking for prayers for Alex but tonight I'd like to ask
for prayers for the many cancer patients and their families (especially the
one's I've mentioned previously) and for the doctors and scientists who are
diligently working to find a cure for cancer. Unfortunately, I don't think
there is a family I know who isn't touched in some way by this disease. I
always thought it was something that happened to other people. One day last
August, we became the "other" people. Not long after Alex was out of the
hospital, I remember being in the grocery store and looking around at all
the people going about their lives and I just wanted to scream "how can you
go about your life? - don't you know that mine is falling apart!" But life
goes on and I will NOT let this disease steal the joy life has to offer. I
will take a cue from my son and deal with it with strength, dignity, and
grace. I thank God for every day. I thank God for all of you. Tomorrow is
MRI day. I'll ask God for a miracle!
So, please keep Alex in your prayers!
Pray for the
miracle of
healing.
The
miracle of Jesus'
touch for
Alex!
BELIEVE!
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WEDNESDAY, FEBRUARY 15, 2006
Today was yoga day. As usual, it went well. It's a little tough for him. He tries every move, sometimes he'll go with the modified move and sometimes he just gives up.
But he goes every week, never complains about it and tries - what more can I ask for? After yoga, we took Norm lunch at his office and then ran a few errands. I needed to
pick up a few things before we leave on Saturday and I don't want to venture out tomorrow if I don't have to since I live south of I-90
(LOL)! (just joking with the weather
reports saying the snow storm is suppose to hit south of I-90!) Alex was a little tired when we got home, he took a short nap and is now ready to watch the Olympics for the
evening!! I'm playing Bunko tonight on one of our church Bunko teams so I'm not going to get to watch tonight.
The clinic called and had to change Alex's MRI time - it's still on Friday. Like before, we'll take the MRI with us to Duke and they will read it there on Monday. I'll be sure
to text Michele and have her update the website as soon as we know anything! Please keep thinking positive thoughts and praying!!
BELIEVE, PRAY, HEAL, MIRACLES = JESUS = HOPE!
Below I've included two different versions of the same bible verse because I liked the way both of them are worded. Although worded differently, they both bring us to the same
conclusion. Read on and I think you will understand.
~ Kelly
We can rejoice, too, when we run into problems and trials for we know that they are good for us- they help us learn to be patient. And patience develops strength of character
in us and helps us trust God more each time we use it until finally our HOPE and faith are strong and steady. Then, when that happens, we are able to hold our heads high no
matter what happens and know that all is well, for we know how dearly God loves us, and we feel this warm love everywhere within us because God has given us the Holy Spirit to
fill our hearts with his love. Romans 5:3-5 (The Living Bible)
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, HOPE. And HOPE does not
disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. Romans 5:3-5 (New International Version)
GOD BLESS!!
TUESDAY, FEBRUARY 14, 2006
HAPPY VALENTINE'S DAY!!
Hope all of you had a wonderful Valentine's day. Norm, Alex and I went out
for lunch with Lance, Christy, Dalton and Teagan. It was so nice to see
them. Since Alex has been sick, we don't see them as much. Then Alex and I
ran a few errands and did some work for Norm. Norm made all of us dinner
and took Bri to practice in Sioux Falls in the evening while Alex and I
stayed home and watched the Olympics on TV. I normally don't watch a lot of
television (although I can say I've probably watched more the past 5 months
than I have in the past 5 years!) but I really enjoy watching the Olympics.
Sometimes I get a little too caught up in watching them and then I don't get
things done in the evening (like journaling!!) until late.
Alex did really well today. He got up somewhat early. Watched the Price is
Right and then we went into Sioux Falls. Being it's Tuesday, (and he tends
to get sick this time of week,) I made him take some anti-nausea meds before
meeting everyone for lunch (I had this fear of him getting sick in
Applebee's!) But he was fine. He hasn't gotten sick at all this week -
another miracle! I'm so glad for that. Today, every time I asked him how he
was he answered "fabulous!" then he look at me and asked "how are you?"
Tomorrow is yoga!! I look forward to it every week. Not only does it give
me an extra workout (I do all the moves, unlike my yoga partner!) but a
chance for the two of us to do something together. Besides I never leave
there without laughing. I've considered doing it twice a week. I think it
really helps Alex with the fatigue.
Well, it's late and I have an early morning work out. Please continue to
ask God for Alex's healing. There is power in numbers - pray hard!! MRI on
Friday!!!
BELIEVE IN MIRACLES!!
MONDAY, FEBRUARY 13, 2006
Just as I suspected, Alex was pretty tired today. He slept most of the day
(he did wake up for The Price is Right!) and in the evening ran some errands
with Norm and Brianna (Norm took the kids shopping for Valentine's - I think
he's trying to suck up!) Although Alex was tired, he wasn't sick - I'll
take tired over sick anytime!
Not much else happened today so tonight I'll be brief. Once again, I ask
that you keep Alex in your prayers - always!!!
BELIEVE!!
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SUNDAY, FEBRUARY 12, 2006
Alex went to Mitchell to spend time with his Dad, Robin and his brothers
today. First they went to Paul's hockey game, then the Varsity game
(Mitchell Marlins) where Lucas was the mascot for the day and then back to
Sioux Falls for the Stampede game. It was a day for hockey!! Tim said Alex
was able to catch a nap in the afternoon so he wasn't too worn out from the
busy day. It was a little strange for Norm and I today not having Alex
around. One or the other of us is usually with him (we do leave him alone
for short periods of time but with his short term memory loss we don't leave
him for long.) Recently I read about a something called "chemo brain."
People who are taking chemotherapy (for any kind of cancer) can have short
term memory loss. It's a side effect from the chemo. While I know a lot of
Alex's memory problems are due to the placement of the tumor, he's been on
chemo since October so we really don't know if some of the problem could be
a result of the chemo. From what I've read about people who experience
"chemo brain," the problem goes away once they are done with chemo. I have
really high hopes that Alex's memory will improve once he's done with chemo!
(Of course it will, the tumor will be gone!)
Saturday was a pretty quiet day. Other than running to the grocery store
with Norm, Alex spent the day relaxing. The Decadron (steroid) they give him
with his chemo usually hypes him up for a day or two. He had a lot of
trouble sleeping both Friday and Saturday nights. However, with his busy day
today, I anticipate he'll sleep good tonight and likely be sleeping a great
deal tomorrow. That's ok though, usually Monday's are when he starts to
feel a little nauseated.
It just kind of dawned on me the other day about how Alex rarely complains
about anything. There are times I don't even realize he's not feeling well.
I'll happen to ask and then he'll tell me, but he hardly ever says anything.
He doesn't get uptight about going for lab work or chemo - he doesn't
particularly like it - he just goes with the flow. He is truly amazing and
I'm very proud of him. I know if it were me, I'd probably be complaining
all the time.
Each day I continue to be thankful that Alex is tolerating the chemo
treatment so well - having minimal side effects. I know that all your
thoughts and prayers are helping these small miracles to happen, soon
leading to the miracle of Alex's total healing!! I have to admit I'm quite
anxious for this next MRI, just like the last one I know it will be good
news. So continue to keep Alex in your prayers!
PRAY HARD
(MRI on Friday!!) and
BELIEVE!
GOD BLESS!
FRIDAY, FEBRUARY 10, 2006
Alex had chemo today. Alex was in a good mood today. Him and I did our
usual playful bantering back and forth. However, today we caught the
attention of the nurses. They have come to know Alex as a bit of a jokester
(although sometimes I have to remind them he's kidding) but I'm not sure
they thought him and I were kidding around. We were, of course. Norm
commented he wasn't sure how the two of us would do alone for three days in
North Carolina. Humor and being upbeat is good!! Whenever he goes to the
infusion center whether for labs or treatment, they always ask Alex how he
is. His standard answer is "fantastic!" The nurse said to him the other
day, "Alex, your always fantastic." He just smiled and shook his head yes!
After treatment, Norm took us to lunch at Champps. Alex and I ran a few
errands and picked Bri up at school. Our evening was spent relaxing in
front of the TV. Everyone was a little tired from the week. Bri had early
practices all week and still hasn't recovered from last weekend in Florida.
I've included a few pictures of our trip. As I mentioned before, it was
cold but we had a great time.
We have no competitions this weekend. It's nice to have a break. I won't
journal again until Sunday evening. Everyone have a "fantastic" weekend and
please remember to keep Alex in your prayers!!
As always,
PRAY and
BELIEVE!! GOD BLESS!!
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THURSDAY, FEBRUARY 9, 2006 (HAPPY 23RD BIRTHDAY CHRIS!!!)
Alex was up early this morning. He felt a little queasy in the morning, but by afternoon felt good. We had no where to go and nothing to do and since it was
snowing we chose to stay home all day. Alex watched TV, checked e-mail and surfed the net. I did house work, laundry, made banana bread and roast for dinner
and relaxed with Alex. These are days to cherish. Tomorrow is chemo, the weekly cycle begins again.
I feel so fortunate Alex hasn't been sick with a cold or flu while on chemo. I know the flu is going around the high school in Brandon, I do worry Bri may get
it or somehow bring it home to Alex. I don't want either one of them sick. His blood counts have been surprisingly good, so I pray he stays well!
I just made our plane reservations for North Carolina, Norm made our hotel reservations. Alex and I are going alone this time. We'll be flying out of Sioux Falls - yeah!!
But we need to stay over Saturday to get a good ticket price. We'll leave here Saturday afternoon and return early Tuesday. Monday is a holiday so if we were to come back
on Monday, tickets were more. Alex's MRI is a week from tomorrow - please pray hard for good news!!
I'll be brief tonight, it's already late and I have to get up early tomorrow. Please keep my new friends
Jason, Angela and Alexandra in your prayers!!
Listed below are people
I have met or come to know that have brain tumors - please say a prayer for each of them - THANK YOU!
Cory, Caitlyn, Jason, Derek, Bill, Jason G., and ALEX!!!
I hope I didn't forget anyone. I know there are so many more out there but tonight I ask for your prayers for these
individuals and their families!!
God Bless and
BELIEVE!!!
WEDNESDAY, FEBRUARY 8, 2006
Today was yoga day. Alex did pretty good. When we were all done he said,
"Wow, this is really hard, I don't know if I can do this." I said, "I know,
but doing yoga is really good for you." He said, "I mean putting my shoes
on!" He cracks me up! He did struggle with the yoga a bit today, but he
didn't give up!! Afterward, we ran to Bagel Boy for lunch and then to the
clinic for lab work. He felt better today than yesterday. He even felt his
memory was a little better. I like to hear that!!
Lately, I've become much more aware of my surroundings. Especially the
people I encounter. This past weekend while at the dance competition in
Florida we stayed at a Disney resort. Disney offers bus service to the
different parks and shopping. One day on the way back to the hotel, a man
and his son (approx. 8 years old) sat down in front of Lisa and I on the
bus. The young boy immediately struck up conversation with two children
sitting across from him. I leaned over to Lisa and said, "He doesn't have
any hair." Under his hat it was plain to see that he was bald, not a shaved
head - bald from chemo. We listened to the children exchange stories when
the young boy said, "My mom wishes they would invent a drug that would keep
you young forever." The children then discussed at what age they would like
to stay. The boys decided 16 because then they could drive. The girl said
she wanted to stay the age she was right now (that would be 6 or 7, I
believe). I had to hold back my tears. I then focused on the father. Part
of me wanted to talk to him. Tell him I totally understand what he is
feeling and going through. The other part of me respected his privacy. I
know there are many parents, spouses, & children out there going through
what I'm (we're) going through. I know I'm not alone. It seems those with
cancer (and their families) seem to share a special bond. I can't explain
it but I've felt it, even with the man on the bus. I have grown and learned
so much these past 6 months. If I can help someone else who's going through
this, it will not have been in vain. I recently received an e-mail from a
wonderful young woman in Georgia. Her husband, Jason, has the same
tumor/cancer that Alex has. Jason and Angela have a 9 month old daughter,
Alexandra. I'd like to ask for all of you for help by including them in
your prayers.
Also, I hope Larry doesn't mind but I thought this was the GREATEST message
(he left it on the message board) and I wanted to repeat it in my
journaling. - Hey Alex, sounds like you're doing well, keep up the good
fight. Technology is great. It's nice to keep up with your progress through
the website and message board, but you know that everyone has been using a
really great wireless message system for years. Seems as though God is the
webmaster. We just send him a wireless message and he forwards that message
to you. What a great system don't you think? My prayers are with you, Chief.
Thank you Larry!!
PLEASE KEEP THOSE PRAYERS COMING!! I know God is listening to his
messages!!
BELIEVE for MIRACLES are happening!
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Tuesday, February 7, 2006
We're home!! Florida was fun, but cold!! We returned home late last night. I apologize for not getting my updating done sooner. I did not have access to a computer in
Florida. I did speak with the guys every day and it sounds like they had a good weekend too. They, too, came home last night. My morning has been spent unpacking,
doing laundry and hanging out with Alex. I missed him. Norm said he's been doing very well. Chemo went fine on Friday and the rest of the weekend was spent doing odd
jobs and watching the Super Bowl at the ranch. He was a little more tired than usual on Sunday, but seems pretty good today. I know Bri and I were only gone 5 days
but it seems like his hair really filled in over that time - he looks great. Our next appointment at Duke is scheduled for February 20th
(MRI will be February 17th
here in Sioux Falls.) I just know we are going to get good news again. God is certainly listening to all of our prayers. Please keep them coming!
I'm sure some of you are wondering how Brianna's dance team did. Well, it was a tough competition. They placed 8th out of 12 for both their routines. The girls were
just happy not to come in last and learned a great deal from the experience. One of the winning teams in their division was from Washington (the state) and hires a
professional from LA to choreograph their routines - thats tough to compete against. They competed on Friday so we had the rest of the weekend for fun. We tried to
take in all the parks (we were at Disney World - it had been almost 10 years since Brianna had been there) in two days. We touched on a few of the highlights of each
park (Magic Kingdom, Epcot, MGM and Animal Kingdom) with our friends and roomies, Lisa and Mariah. We had a wonderful time and laughed a lot despite the rain and cold
weather. It did give me the itch to go on vacation, though. Alex and I will do some research this afternoon and see if we can find a good destination. Somewhere warm,
where Alex can relax and enjoy without a lot of ''tourist sightseeing'' if you know what I mean. I'll take any ideas or suggestions. We're hoping to go in March or
April during one of Alex's ''bye'' weeks from chemo.
Remember to keep praying and believe in those miracles!!
Alex sends his thanks for all your thoughts and prayers!! GOD BLESS
WEDNESDAY, FEBRUARY 1, 2006
I can tell Alex is feeling better. He was up early this morning - on his own. Him and I met Norm in Sioux Falls, I had several appointments in the
afternoon so Alex went with Norm. They called me later to tell me they decided to go out to the ranch tonight and tomorrow. Returning tomorrow night since
Alex has chemo on Friday.
I returned home early this evening and have a million and one things to do to get ready to leave in the morning. Our flight leaves around 6 a.m. if that gives
you any idea what time I will be up in the morning!! I'm not even finished packing so I will be brief. I'll try to get to a computer sometime over the weekend or
see if I can talk the guys into doing an update - if not, I'll be back on Monday.
It's off to sunny Florida (oh that's right, it's suppose to rain!!) No matter, it will be fun!!
Remember, even though I won't be writing - please keep praying!!
GOD BLESS
BELIEVE, BELIEVE, BELIEVE!!!
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MONDAY, JANUARY 30, 2006
It was a rather quiet day around here today. Alex spent most of the day
picking on me (which translates into he was feeling good today), playing
some video games and of course watching TV. He ran an errand with Norm
later in the day and watched a movie with us in the evening. Despite not
having much to do - it was a good day.
Tomorrow is yoga!! We're doing it earlier this week since I'm going to be
gone. Remember, tomorrow I'll post my journal entry to the message board.
(Michele will be in sunny Jamaica! I'm jealous!) I'm going to make this
brief tonight so I can get it sent to Michele.
I know I say thank you a lot to all of you who so faithfully follow Alex's
progress and continue to keep him in your prayers, but I can't begin to tell
each and everyone of you how much it means to me - your prayers, positive
thoughts and support. So once again...THANK YOU AND GOD BLESS. Keep those
prayers coming. I know they are working! I know God is listening! Alex
will be healed!
PRAY HARD. BELIEVE IN MIRACLES!!
SUNDAY, JANUARY 29, 2006
Alex had a good weekend. He was a little tired but felt pretty good. We
didn't do much on Saturday. Saturday evening Brianna danced with her high
school team at the girls and boys basketball games in Brandon. Alex went
out with Dusty and Adam. (Adam, I got the pictures - it might be a while
before Michele and I get them added, we'll do so asap - read on and you'll
see why!)
Sunday we went to church (he didn't even wear his hat - his hair looks
really good). Bri had practice in the afternoon so I took her into Sioux
Falls and ran some errands. Alex slept and watched TV. It was a relaxing
Sunday.
This week my good friend, Michele, who graciously maintains this website for
me, is going on vacation. When I journal, I just type an e-mail to Michele
and she updates the website - everyday! Since updating this is a little
beyond my technical capabilities, my journal entries for next week (starting
Tuesday) will appear on the message board. However, since Brianna and I are
leaving on Thursday for Orlando, I probably will not update the site from
Thursday through Sunday anyway (unless I can get Alex and Norm to do a brief
update - Alex does have chemo on Friday - or if I can find a computer in
Florida!) I will do an update when I return on Monday.
Michele and her
husband, Clay, are going to Jamaica with some friends. I wish for her
relaxation and fun in the sun - she deserves it!! Have a great time and a
Pina Coloda for me (or maybe a rum punch!? --
Kelly I promise to have
one of each for yah!!!!! I Love you all and will miss
you!!!!! I will call you when I get back on the 8th!)
Alex is sitting next to me playing solitaire on his computer. He just won,
he's watching the cards bounce down!! I'm going to play a few games with
him. As always, please remember to keep him in your prayers!!
GOD BLESS AND BELIEVE!
FRIDAY, JANUARY 27, 2006
Alex felt better today. After the Price is Right, he washed my car and
swept out the garage. It's hard to believe this is January, feels like
spring. Later, the three of us (Norm, Alex and myself) went into Sioux
Falls to pick Brianna up (she had dance practice) and we all went out for
dinner. We came home with the intentions of watching a movie but ended up
watching two hours of That 70's Show (that's a funny show!) Although
uneventful, it was a very good day.
It's hard to believe we don't have a dance or cheer competition this weekend (Bri does have to dance at the basketball game tomorrow night - but no
traveling involved - woohoo.) However, Brianna and I are leaving this
coming Thursday for a dance competition next weekend in Orlando. (Just Bri
and I, we're leaving the guys at home!) We'll return the following Monday.
If her team does well and gets into the finals, it will be televised on
ESPN. From what I understand, it's a pretty tough competition so we'll keep
our fingers crossed!
We don't have much planned for the rest of the weekend. We haven't been to
church (we're gone most every weekend) for a while, it will be nice to go.
I miss my friends and our church family.
Please keep praying and thanks to all of you who have been so wonderful and
supportive during this time. God Bless!!
BELIEVE!!
THURSDAY, JANUARY 26, 2006
(HAPPY BIRTHDAY GRETCHEN!!)
Yoga was a little harder today. I enjoyed it but Alex had a little tougher time with it. He's really quite entertaining. I'm trying so hard
to concentrate on what I'm doing and I'll look over at him and he'll be trying really hard to get into a position (sometimes he just gives up) and
it will be quite comical. If he notices me watching, he usually sticks his tongue out at me or flips me off. As much as I tease him, I have to
admire him for trying. All in all, he does very well.
Alex went to yoga with me in the morning and then with Norm to some meetings and stuff in the afternoon, but he really didn't feel the greatest.
He even got a haircut today. His hair is coming back in quite nicely. It amazes me - another one of those small miracles to be grateful for!!
He's been falling asleep around 8:00 in the evening and he would probably sleep quite late in the morning except for the fact we've been getting him up
early. By early, I mean this morning it was around 8:30. He moves a little slower these days so you need to get him going at least an hour before you
want to leave. He likes long hot showers.
As always - please keep Alex in your prayers. Think positive and praise God!!
BELIEVE!
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WEDNESDAY, JANUARY 25, 2006
Alex was feeling a little better today. Still tired and a bit queasy. I
think it was a combination of over doing at the ranch and the chemo. Alex
does occasionally get sick from the chemo. He usually doesn't feel it
coming on in enough time to get to a bathroom when he's in a public place
(bowls or garbage cans are good!) However, I think the fact that it comes
on so quickly is a good thing because he's usually not feeling that bad
prior and then feels good after. He certainly has the admiration of his
sister, she marvels how he can puke and then immediately go get something to
eat! Fortunately it only lasts a couple of days (usually Monday and
Tuesday). We have learned to laugh about it.
Ok, on to another subject!!! Alex was feeling good enough to go to Sam's
with Norm and I this afternoon. It was such a beautiful day, I'm glad he
got out for a while. I wish we could have gone for a walk outside but
Brianna had dance practice (in Brandon) and tumbling (in Sioux Falls) after
school and then Norm and I went out to dinner with Mike and Penny for his
birthday.
I really don't have much else to share this evening. I could tell some
funny "puke" stories but I don't think either Alex or Norm would appreciate
it. Life with cancer, the things you learn to laugh at - who knew?!
Tomorrow is yoga!!
Keep PRAYING and BELIEVING! GOD BLESS!
TUESDAY, JANUARY 24, 2006
(HAPPY BIRTHDAY NORMAN, JILL AND CAROL)
Alex wasn't feeling very well today. So bad, in fact, the guys didn't make
it home from the ranch until this evening. We postponed Norm's birthday
plans until tomorrow night. We're not sure if Alex "over did" or if he has
a touch of the flu. I'm sure he'll be fine with a little rest.
I'll be brief tonight, I got a little long winded yesterday. I'm going to go
spend some time with the "guys!" I do have to say I hope no one blew away
today!! Was that wind crazy or what?!
Please keep those positive thoughts and prayers headed Alex's way! I know
God is listening!!
GOD BLESS and BELIEVE
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MONDAY, JANUARY 23, 2006
Alex and Norm are still at the ranch. I've talked to Alex every day and he seems to be doing very well. He was the one who wanted to stay. He's been helping Norm work
on the dog kennels. Norm says he's a "man on a mission." He's been insulating, moving stuff around, and when I called the other day he was scooping dog poop and hosing
out the kennels. Sounds like fun to me!! Although I miss him, I know it's really good for him to be out there and he enjoys it. Norm says he's been sleeping late and
doesn't have much of an appetite. I asked how his memory was and he said so-so. He did remember to tell Norm he called me to tell me they weren't coming home today because
they still had a lot of work to do. Norm wasn't aware of this but was happy to stay too. I'm hoping they come home tomorrow as it's Norm's birthday and we have dinner
reservations with friends (he doesn't know this yet!)
This is a "bye" week, meaning no chemo on Friday - yeah!! Alex should be feeling good by the weekend (although it sounds like he's feeling good now!) and Brianna doesn't
have a competition this weekend - we get a breather - so maybe we can all relax and spend some time together. Bri's competition went very well last weekend. Both her high
school and club team competed (she was a busy girl) and both did very well. There are no first, second, third, etc... places in this competition. Awards are given by points
and it's kind of hard to explain. Her club team took home every award possible. Great job to both the Brandon Valley High School dance team and Junior All-Stars from
Champion!! The day was very long. I got up at 4:15 a.m. on Saturday and went to bed at 2:00 a.m. on Sunday. By that time, I really wasn't all that tired (I was past
that point) and really thought about staying up till 4:15 again just so I could say I'd been up 24 hours but decided against it! I'm not that young any more!!
The other day I was looking at some pictures of Alex and Bri that had the date printed on them. They were taken last summer before Alex was diagnosed and I now find myself
(always) looking at those dates and thinking "that was one week (or however much time) before my world was turned upside down." I'm not sure if you ever really come to terms
with something like this. I've learned to accept it as it is and do what I can to make the best of things. I try to "create my day" to make it as good as possible and cherish
every moment - especially my time with my children. But I still have bad days, sad days. I still have fears even though I have tried to put my complete trust in God on this
one. I pray that my faith remains strong and I can find that "peace that passes understanding." I feel really lucky. I've read about and talked to others with brain tumor who
aren't doing as well as Alex. I don't care about his short term memory loss. If we can get rid of the cancer and tumor, and he has to live with the memory loss the rest of his
life - who cares?! We can deal with that. I really am very optimistic. Someone asked me if the doctor's had used the word "terminal" yet. That word is not in my vocabulary as
far as Alex is concerned. I don't even think that way. In reality. we're all terminal. None of us will live forever here on earth. In the meantime, while we're still
here, I want the best, the most for him. I want him to experience the joy of a loving wife, children and grandchildren! And he will, I know he will!! So, keep those
thoughts and prayers coming!! Like I said before, someone has beat every type of cancer - Alex will beat this!! Please keep praying.
PRAYER, BELIEVE, MIRACLES!!! and FAITH!!!
"Have FAITH in God," Jesus answered. "I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea, and does not doubt in his heart but BELIEVES
that what he says will happen, it will be done for him. Therefore, I tell you, whatever you ask for in PRAYER, BELIEVE that you have received it, and it will be yours.
Mark 11:22-24 (New International Version)
FRIDAY, JANUARY 20, 2006
Alex had chemo today. We got the numbing cream in the right spot and
although he's still a little sore from the surgery, using the port didn't
hurt as bad today. Kim and Mic stopped by during his treatment to say hi.
Afterwards, Norm, Alex and I went out to lunch and then the guys headed out
to the ranch for the weekend. I talked to Norm and he said they arrived
safely and Alex was still feeling good.
Bri has another competition on Saturday (dance only) in Sioux City. It's a
regional competition and although a really good one, they cram a lot into
one day. We normally stay down there the night before but we decided to get
up early and drive down in the morning this time, she doesn't need to be
there until 7:30 a.m. (it's about 85 miles from here.) From past
experience, the competition usually gets over between 10:00 and 11:00, we're
driving home after. Can you say really long day?!?
I won't journal again until Monday. Keep having those positive thoughts and
continue to keep Alex in your prayers!!
GOD BLESS AND BELIEVE!!
THURSDAY, JANUARY 19, 2006
Alex and I went to yoga this morning. I think he does really well for a 22
year old guy. He only flipped me off once and got told by the instructor "I
saw that!" After yoga, I dropped him off at Norm's office for the rest of
the day.
Tonight, I had dinner with my friend, Ralynn, at Olive Garden. Norm took
Bri to dance practice and Alex stayed home. Molly sent Alex Tiramisu home
with me (he thanks you from the bottom of his heart, Molly - his exact words
were "ahh, that's so sweet!")
Other than that, it was a quiet day. Alex felt good and he even had a few
"bright spots" as far as his short term memory is concerned. "Bright spots"
to me are the occasional times when (for whatever reason) he remembers
things from earlier. Usually, if reminded, he remembers things, but if
asked (and not reminded) he usually has a difficult time recalling. These
times are always encouraging and give me renewed hope. I really have no
doubts though, I know Alex is getting better. All your thoughts and prayers
are certainly helping, so please keep them coming!!
MIRACLES!! BELIEVE!!
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WEDNESDAY, JANUARY 18, 2006
Alex went with me to an appointment and then I took him over for lab work.
They used his port to draw blood, it was a bit painful. With the added
trauma (doing it twice) from Friday, it's still a little swollen and sore.
We put the lidocaine (numbing cream) on but it didn't seem to help much.
Since this is still new, I didn't know exactly where to put the cream on.
We had it a little high so the nurses showed me where to apply it from now
on. By the time we returned home, he was tired. He spent the rest of the
evening at home.
Not much else happening today, so I'll be brief. I take solace in knowing
how many people are praying for Alex. So as always, I ask that you keep
Alex in your prayers - always!!
BELIEVE
TUESDAY, JANUARY 17, 2006
Alex had a rather quiet day. I had a dentist appointment this morning and then ran some errands in Sioux Falls. Alex was sleeping when I left and upon my
arrival home I was told "I was late" and his breakfast had consisted of candy (he, of course, didn't tell me what he had eaten,
Bri, who was home sick from
school, ratted on him.) He was a little nauseated in the late afternoon (probably all the candy!) but felt better by dinner time. I had to keep the two of
them distanced from each other today as I didn't want Alex catching whatever bug she has. Despite my efforts, this place is small and they still managed to get
in a few insignificant verbal fights. I really thought with the age difference between those two they wouldn't fight as much, I was wrong.
Dusty and Megan stopped over in the evening to say hello and took him out for a while. Since he had been home all day, I'm sure he was glad to get out of the house
for a while.
His spirits have been really good lately and he told me today that he really wasn't worried, that he would beat this. My heart did a somersault when he told me this.
They say that attitude is half the battle with this disease - he certainly seems to have the right attitude.
The hair he lost from the radiation is finally starting to grow back. He's REALLY happy about that since there was a chance it wouldn't come back at all in that area.
I was kind of anticipating it all falling out from the chemo, so this is a good thing!
In case any of you have e-mailed Alex and he hasn't responded, please know that he does read all the messages and e-mails. However, the tumor has impaired his cognitive
functioning to some degree and he's not very good at responding. Please continue to send them as he really enjoys them, but I hope you understand if he doesn't respond.
I continue to watch the counter on the website in amazement. The continued support and response from everyone has truly been amazing. God has sent so many wonderful angels
into Alex's life and mine. To all of you who faithfully check the website, send thoughts and messages and pray continuously, I just want to say THANK YOU AND GOD BLESS!!
I especially want to say a thank you to my cousin, Dene'. She wasn't a part of my life for a long time, now I can't imagine life without her. She's been my hero.
I love you, Dene'!!
Please continue to send us your positive thoughts and keep Alex in your prayers. God is listening.
BELIEVE cause MIRACLES HAPPEN!!
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MONDAY, JANUARY 16, 2006
Alex made it through the weekend with flying colors. Considering everything
that happened on Friday, it seemed neither the surgery or the chemo got him
down too much. He was a little bummed that him and Norm had to come back
from the ranch early (last night). But Bri and I had locked ourselves out
of the house. Luckily, I realized this on Saturday night so they had plenty
of time to get home before we did. Bri's competition went well (it was just
a cheer competition) and her team once again returned home with a first
place trophy.
The weekend was exhausting and we all took advantage of the day off with
sleeping in a little. Alex was sleeping (he has a makeshift bed in our
living room - we're still living in a rental!) and Norm told me to turn the
TV to The Price is Right (it had just started). Alex face was covered up to
his eyes. I turned the volume on the TV up and watched him. Suddenly his
eyebrows shot up (that's all of his face we could see - it was pretty funny)
and he slowly moved the blanket, rolled over and started watching. I tell ya, the guy is a Price is Right junkie!! You know, we've been trying to
think of a place to go for a family vacation, maybe I should get tickets to
The Price is Right!!
Alex really hasn't been as fatigued as usual. That's good. He's been
spending time at work with Norm. It's been really good for him.
Not much else happening. The guys are waiting for me upstairs right now,
we're going watch a movie from Pay Per View. As always, I asked that you
keep Alex in your prayers. I pray this chemo will work - he will get
better! We just have to
BELIEVE!!
GOD BLESS!
FRIDAY, JANUARY 13, 2006
Please remind me never to schedule a procedure on Friday the 13th. Alex had
his port put into today. Normally, this is a simple outpatient (same day
surgery) procedure. They told us it would take 30 to 45 minutes. When the
clock hit two hours, I was starting to get a little worried. When the
doctor finally came out to talk with us, we learned that there was a "kink"
in the catheter of the first port and they had to open the incision and redo
the entire thing (they ended up using a larger one.) The doctor said she
has been doing this procedure for seven years and this is the first time
that has ever happened. Go figure! Because the procedure took quite a bit
longer than anticipated, we had to rush Alex over to the Cancer Center
immediately after he came out of recovery to get his chemo. We had to leave
the IV in his hand and use that and the port to administer both drugs (Avastin and CPT-11) at the same time. Even doing it this way, we made
everyone stay at the infusion center late (only a little after 5) to finish
Alex's chemo. Whewwww. What a day. Alex wasn't feeling all that bad
tonight except for being a little sore. The Decadron he receives with his
chemo usually gives him a bit of energy, however, he did ask for a pain pill
after dinner.
Tomorrow Bri and I leave for St. Cloud for a cheer competition. Norm and
Alex are going to head to the ranch for the rest of the weekend after
attending a funeral (a friends father passed away - our sympathy to Darrel
and his family.) Once again we are all heading in different directions, so
I won't be journaling again until Monday.
Have a safe and relaxing weekend and please continue to keep Alex in your
prayers.
BELIEVE in MIRACLES
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THURSDAY, JANUARY 12, 2006
We arrived back home late last night. After landing in Omaha, we met Alex's cousin JoAnne and her husband, Jason for a quick cup of coffee and catching up.
I got Alex up early this morning (he was none too happy about it) and him and I went to a yoga class (thanks for the suggestion, Stephanie!!).
I wanted something to get him out of the house, a little exercise, plus - yoga teaches great relaxation techniques. Too bad he hadn't had it before his
surgeries. Since neither of us had ever done yoga we started out with a private session. It went very well. I dropped him off at Norm's office after and when
Norm ask him how it went he said, "good and the instructor's cute!" Well, there's a bonus! So, we're going back next week!
Tomorrow is a big day for Alex. He will be having a port put in. This is a permanent catheter to a central vein that is surgically inserted under the skin surface
on his chest. Chemo can be given through this instead of an IV in his arm. They can also draw blood from it. He'll have the surgery in the morning (same day surgery)
and chemo in the afternoon. Tomorrow is a chemo and Avastin day, that takes longer. So say an extra prayer for him tonight to help him get through tomorrow.
I feel like I'm living out of a suitcase and in hotel rooms these days. If you recall, Bri had a competition last weekend in Minneapolis, we got back, had a day at home to
regroup, went to North Carolina, we're back, I get a couple days to regroup and Saturday leave for another competition in St. Cloud for the weekend. Norm and Alex aren't going,
they are heading back to the ranch for the long weekend, providing Alex is feeling up to it.
What can I say to everyone - but thank you all so much for your continued prayers. They are working. God is listening. You can't imagine my joy in the doctor's office yesterday.
I hoped for more and will continue to hope and pray for more. But I'm very happy with what we got.
I wanted to share with all of you the saying on my bookmark:
To
BELIEVE
is to know that every day is a new beginning. It is to trust that miracles happen and that dreams really do come true.
To
BELIEVE
is to see angels dancing among the clouds, to know the wonder of stardust sky and the wisdom of the man in the moon.
To
BELIEVE
is to embrace the value of a child's innocence and the beauty of an aging hand, for it is through their teachings that we learn how to love.
To
BELIEVE
is to know that life is a precious gift to cherish and that wonderful surprises are just waiting to happen. All our dreams are within reach....if we
BELIEVE!
So keep BELIEVING and PRAYING - we'll get there!
WEDNESDAY, JANUARY
11, 2006 at 8:54 am
Cell phones are an awesome way of sending messages! Kelly sent me
Alex's update in text messaging
while she, Alex and Norm were getting ready to fly back to Omaha!
Good News on
Alex!
We saw the doctors here at Duke and the tumor is NOT growing.
The MRI done last week shows less
than enhancement than the previous MRI. This means less blood flow to the tumor and that's good!
It may have even shrunk slightly but we wont know that until a Radiologist actually reads the
MRI.
All in all, the doctors were very pleased. Alex will continue treatment with the Avastin and CPT-11.
His next chemo treatment is this Friday.
God is truly with us and
listening to all our prayers! Please keep them coming!
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TUESDAY, JANUARY 10, 2006
We're back in North Carolina. A half hour out of Sioux Falls, we realized
Alex had forgotten his driver's license. (The one he just got yesterday!)
We turned around and headed back home to retrieve it which put us an hour
behind schedule. We arrived at the airport in Omaha about 40 minutes before
our flight was to leave and of course, I was singled out to be searched
further, but we made the flight. The rest of the trip was uneventful.
The weather here is very nice. About 56 degrees when we landed. After
checking into the hotel, we grabbed a bite to eat. Now it's off to bed as
tomorrow will be a long day. We are planning on flying back tomorrow
afternoon. I'll call Michele so she can update the website as soon as we
know something. Thanks and God bless all of you for hanging in there with
Alex through all of this. The thoughts and prayers mean more than you can
ever imagine to all of us. Think good thoughts, pray, and remember to
BELIEVE IN MIRACLES!!
GOD BLESS!
MONDAY, JANUARY 9, 2006 (Happy Birthday Tim)
Whewwww, what a weekend! I know some of you are waiting for my updates - my
apologies a being a little late today. Bri and I got home rather late last
night from the competition in Minneapolis. I'm happy to say her teams did
very well (again). Her dance team brought home a first and second place
trophy and her cheer team took first! Once again, congratulations to all of
the girls and coaches!
While Bri and I were at the competition, Norm and Alex spent the weekend at
the ranch. Alex felt good (other than a bit tired) all weekend. He was a
little bummed that The Price is Right isn't on on Saturday's. Other than
that, the food and hunting were very good. The highlight of the weekend was
having Dusty and Adam join them on Sunday for a little hunting. Norm said
Alex really enjoyed having them there.
Alex seems to have misplaced his wallet. Norm thought it was at the ranch,
but they did quite a bit of looking and were unsuccessful in finding it.
I've searched the house and all coat pockets and sofa's, but to no avail.
Both his driver's license and military id were in it, so we are scrambling
today to get him another license so he has some form of id to fly tomorrow.
Yes, tomorrow we leave for Duke. Again, we will be flying out of Omaha.
Alex's appointment is at 8:30 Wednesday morning. They will go over his MRI
(which we will bring with us), evaluate things and decide if Alex will
continue this treatment or move on to another. Please pray for good news.
We plan on flying home Wednesday afternoon. I will be sure to update the
website ASAP after our appointment as I'm sure many of you are anxiously
awaiting the results. I have positive feelings about it!! My cousin, Dene', says "thoughts are things" - so everyone have positive thoughts!!
PRAY, BELIEVE and THINK POSITIVE!!
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THURSDAY, JANUARY 5, 2006
Tomorrow is MRI day!! Pray hard. Unfortunately we won't know the results until Wednesday. We will be leaving for Duke on Tuesday of next week (January 10th),
Alex's appointment is early Wednesday morning and if (rather, when) all goes well we will fly back late Wednesday afternoon. Once again, we will be flying out of Omaha.
The savings are phenomenal. However, I did figure out a way to get cheaper tickets out of Sioux Falls by having Alex's appointments at Duke on Monday's (we can fly out on
Saturday and return on Monday). I don't think it will be a problem asking them to make future appointments on Monday's.
Today, Alex, Norm and I went lot hunting. I think we finally have it narrowed down. If all goes well, we hope to have a hole in the ground by March! I can't wait. It will
be so nice to have a home again! Although, I must admit I've learned a great deal from this experience. When we sold our home, we sold everything in it. Furniture, lamps,
pictures, rugs, floral arrangements, nic nac's etc. We packed our clothing, closet, garage and kitchen stuff and moved out. I now liken it to having a fire - we didn't even
have a chair to sit on. When we finally moved into the rental we're currently in (after 6 weeks living in our motor home at Yogi Bear campground - now that was an experience!)
we had a TV (Norm's first purchase) and an air mattress. As much as I dislike living here, I've learned to count my blessing and be grateful. We have a roof over our head and
food on the table. We have the means to get Alex excellent health care and most of all, we have each other. Living in smaller quarters with few belongings has taught us the
meaning of family, cooperation, space and time. We will leave here, and when we do, I don't have to return each day and remember this was were Alex was sick. New year, new home,
new beginnings.
After lot hunting, we stopped by Norm's office. Alex socialized and was in a great mood when we left. To all of you at Viereck's - I think I may have to bring him down there
more often! Maybe it was the crazy website's Tom was showing him!! Whatever it was, I noticed his memory was a little clearer this afternoon also.
In the evening, I took Bri to dance/cheer practice and Norm and Alex ran errands. Brianna's competition season is kicking into high gear. Friday, her and I will be traveling to
Minneapolis for a competition. Norm and Alex are going to the ranch for more hunting. Because we are all heading in different directions this weekend, I won't be journaling again
\until Sunday evening. I hope all of you have a wonderful weekend and continue to keep Alex in your prayers.
PRAY, PRAY, PRAY and BELIEVE!!
p.s. Has anyone noticed I've gotten the year right every entry?! I know it's only been 5 days, but still!!
WEDNESDAY, JANUARY 4, 2006
I worked out this morning and then came home and did some picking up around
the house. I reread the Christmas cards and letters and want to thank all
of you for them. I didn't get cards sent out this year. I really wanted to
get a picture of the entire family (which is tough with Chris and Nicole in
California) but Alex wasn't too keen on the idea of getting a professional
picture taken (totally understandable). Later I asked him if he was allowed
to keep his hat on if we could do some sort of picture. He agreed to that,
so I'm hoping to get something put together soon. (Our plan is for a family
vacation in March or April so I'll be able to get one of all of us then.)
Alex and I met Norm for lunch in Sioux Falls. I had an appointment after,
so the two of them picked Bri up from school and then headed home. Alex
felt good today. He dozed on and off during the football game this evening
but had a lot more "awake" time today. I have noticed that Sunday, Monday &
Tuesday after chemo are his most fatigued days. With this being a "bye"
week, by this time next week he should feel really good.
Remember to pray hard this week - Friday is MRI day!!!
BELIEVE IN MIRACLES!!!
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TUESDAY, JANUARY 3, 2006
(HAPPY BIRTHDAY, JEFF!)
We had another very quiet day today. Alex slept on and off and watched television. He did go with me to pick Bri up from school and to the bank, but other than that....not
much happening here. In other words, it was a very good day!
So, I thought I would fill you in on a few more "Alex facts." Let's see....Alex was a student to student ambassador when he was 15. He traveled to England, Ireland, Scotland and
Wales. Those were some of the hardest 3 weeks of my life. We had very little contact and he stayed with host families and at youth hostels. I do recall him being able to call home
when he was in England. He informed me he had just finished catapulting rabbits. As you can imagine, I envisioned rabbits flying through the air! In fact, he was shooting them with
a slingshot.
Alex did go to college for one semester out of high school. He attended SDSU in Brookings before deciding he wasn't ready for college. He moved home and worked several odd jobs
before enlisting in the Air Force. (He enlisted right around the same time Bush declared war against Iraq. As you can imagine, as a mother I was not overly thrilled with his decision.)
After basic training, Alex went to Sheppard AFB to do his technical training in ammunitions. He graduated top of his class.
(Click
Here for picture) I was very proud of him.
His technical graduation was every mother's dream as he got up for award after award. Alex was enrolled last fall at Southeast Technical school in Sioux Falls and had two weeks
done before being diagnosed with the tumor. For once, he knew what he wanted to do with his life. He will again, this is just a detour.
I know that many of the detours life gives us are God's way of saying we are going the wrong way. Some we understand, some we do not. The trials and tribulations we face often times
bring us closer to God. This has certainly been true for me. I find comfort in God's word. This is the most difficult thing I have and hope ever will experience in my life, but I'm
not alone. In addition to my friends and family, Jesus has walked every step with me. I know he is listening to all of our prayers so I ask you - please continue to pray. He's
listening!
BELIEVE
MONDAY, JANUARY 2, 2006
Alex and I worked on his iPod today. We were having installation problems
and although I'm quite computer illiterate, I have to pat myself on the back
as I figured out most of the problem with minimal calls to Norm!! When we
had our company (it was a software company) Norm would get upset with me for
not figuring (computer) things out on my own. My reasoning was that I had
an entire company of programmers at my service - who wouldn't help the
owners wife?! Especially when she signed their paychecks!! Speaking of our
old company, I know many of our past employee's check in regularly to see
how Alex is doing (Alex worked at Micro Medical for a short time) and I just
want to send them a special greeting. Many of them (who are still employed
at GE Medical) chipped in and brought several wonderful baskets of goodies
for Alex and our family while he was in the hospital. I miss the days of
Micro Medical and the "family" we had then. It's good to know they still
think of us - they are all a GREAT bunch of people.
Bri had cheer and dance practice today. Afterwards, the four of us went out
for dinner at Applebee's. Although a little tired, Alex was feeling pretty
good. He did tell me his joints (particularly his knee's again) were aching
some but not as bad as they did on the Temodar. His biggest complaint with
this chemo is the nausea (his stomach) and fatigue. His memory still isn't
very good but every once in a while I notice him remembering something I
said or did earlier in the day. That's when my heart warms and I just know
he's going to get better.
2006 is a year for miracles, I feel it!! Keep those prayers headed our way
and don't forget to
BELIEVE!
P.S. Alex left his cell phone out at the ranch last week and we haven't had
a chance to get it. So, if you've been trying without success to get a hold
of him, that would be why!!
SUNDAY, JANUARY 1, 2006
Happy New Year!
We had a very quiet start to 2006. Norm, Alex and I stayed home in the evening. Norm made us assorted hor'deurves and King Crab legs -
it was very nice and relaxing. Brianna went to Great Bear snowboarding with friends. I picked her up around midnight and the two of us sat and watched the
wonderful fireworks show before heading home. Alex was very tired from the events of the day (Grandpa Roy's funeral) and slept for almost 14 hours straight.
His blood counts are a little lower, although still within "OK" limits, but the fatigue from it is starting to show. Dusty and Adam called earlier in the evening,
Adam was hoping Alex could go out but Alex was already asleep.
As I mentioned, Saturday was Grandpa Roy's funeral. It was good to see friends and family but a very sad day nonetheless. Roy and Neva were married for 68 1/2 years - wow.
He was truly a wonderful man and will be greatly missed by friends and family alike. My thoughts and prayers are with Neva and family during this difficult time.
Today was spent watching football - not much else. This coming week is another "bye" week for Alex (no chemo - yeah!). Friday is MRI day (mark your calendar -
PRAY HARD).
Although we will not know the results from it until next Wednesday (January 11) when we see the doctors again at Duke.
Please pray for good news!
Today as I sat down to read, my Bible opened up to Luke 11. In this chapter Jesus is talking to the disciples about prayer (and persistence). I will not type it all but I will
end with this, "And so I tell you, keep on asking, and you will be given what you ask for. Keep on looking, and you will find. Keep on knocking, and the door will be opened.
For everyone who asks, receives. Everyone who seeks, finds. And the door is opened to everyone who knocks." Luke 11: 9 & 10.
As always, please keep praying for Alex. Persistence pays off!! The reward- a miracle - Alex's will be healed! 2006 will be a great year!!
BELIEVE
FRIDAY, DECEMBER 30, 2005
Alex had chemo this morning. It went well although he seemed a little more
tired than usual afterwards, the Decadron (steroid) he gets with the chemo
usual gives him a little energy boost.
Brielle has been staying with us for a few days. She has been our comic
relief, I want to keep her. She's going home tomorrow, she'll be missed!!
(Today Brianna, Brielle (she's 5) and I stopped at the store to buy a
sympathy card. Brielle asked me what it was for. I explained that when
someone dies you send (or give) a card. She looked at me with a very
serious face and said "Who's going to read it?")
Tomorrow is Grandpa Roy's funeral. We will be traveling to Welcome for the
funeral and return home later in the day. We currently have no plans for
New Year's Eve. I'm not sure if Alex has made any plans with his friends,
however, with the chemo today and the funeral tomorrow I'm not sure he'll be
feeling up to doing much of anything. We'll probably just play it by ear.
Maybe we'll take in a movie and usher in the new year at home. I don't like
going out on New Year's anyway, I always worry about drunk drivers.
Not much else for today. I'll journal again on Sunday. I pray everyone has
a safe and health filled new year!!
New year - new beginnings!! HAPPY 2006!!! Stay safe!
Remember to pray and BELIEVE in MIRACLES!
God Bless!!
Kelly
THURSDAY, DECEMBER 29, 2005
Alex and Norm spent the day at the ranch. They did a little hunting and
should be home early this evening, I hope the roads are good.
As I was typing an e-mail earlier this evening, I started reminiscing about
when Alex was younger and thought I might share a few things that you may
not know about Alex with all of you.
Alex was a premature baby (6 wks) - he weighed 5 lbs 3 ozs at birth and spent
several weeks in the ICN at Sioux Valley Hospital. He was a quick study though,
he learned how to whistle at 9 months old, couldn't talk but sure could
whistle.
In grade school, Alex
loved bikes - not cheap ones mind you. Bikes you could do tricks with. He
worked odd jobs and saved his money to buy his own.
In middle school, he
switched over to roller blades and snowboarding. He took first place in
several snowboarding competitions at Great Bear.
And of course, in high
school his love affair with cars began. He's had three, a red Jeep Cherokee,
a blue Honda Civic and his current car, a black Mitsubishi Lancer.
As you
can tell by some of the pictures in the photo gallery, Alex loves cats (he
got that from his mother). He mostly likes to pick on them and then can't
figure out why they aren't affectionate to him later. His favorite cat was
a calico named Tweety who was 15 years old when we put her down. (Picture
of Tweety and Alex
click
here)
When he was just a toddler I was
working and Norm was suppose to be babysitting (yes babysitting - we weren't
married yet.) I came home to find the cat (Tweety) had a new hair cut. Not
one whisker remained. Alex was quite proud of his accomplishment. Thank
goodness he never cut his own hair.
Alex is an awesome golfer. He lettered
in golf his Freshman year at Washington High School and actually has a hole
in one to his credit golfing with his dad at a golf course in Mitchell.
When he's feeling good, you may not want to take him on in bowling as he's
very good at that too.
When he was younger, Alex rarely called me mom.
Instead, he called me "Toots." He has a knack for making up new words.
Fantabulous comes to mind among others.
Anyway, I could go on, but this got
a bit longer than I anticipated.
Tomorrow is chemo at 9:30 a.m. Next Friday is MRI day - maybe if we start
early and say a few extra prayers.......we'll get good news!!
Keep those prayers coming!!
PRAY, BELIEVE, FAITH - ALL MAKE MIRACLES HAPPEN!!
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WEDNESDAY, DECEMBER 28, 2005
Norm and Alex left early this morning. After getting Alex's lab work done,
they headed for the ranch for a little hunting. I didn't hear exactly how
the hunting was but Bri spoke with Alex early in the evening and he was
cleaning birds. So I think it's safe to say it was a success. They will be
home sometime tomorrow evening. Alex has chemo scheduled for Friday
morning.
I pray every day for God to give me guidance. It's very difficult to know
the right things to do when your loved one has cancer. Do you go on a
strict organic diet? Do you give them this supplement or that one? Do you
give them supplements at all or does it interfere with chemo? This will
cure cancer - that will cure cancer. Trust me if you've surfed the internet
at all you find EVERYTHING. It's very confusing. I'm married to a man who
wholly believes in western medicine - listen only to the doctors. Do they
know everything? What to do, what to do?!?!? Today I was talking with a
man regarding the supplement we are currently giving Alex. He was quite
knowledgeable on cancer treatments and holistic medicine so I asked him, "If
your child had cancer, what would you do?" He told me a few things and
lastly he said, "did I mention prayer? Some people forget to do that." I
reassured him I had not!!! So I leave you today asking you not to forget to
pray for Alex (and guidance for me!)
Pray, believe, faith & miracles!!
Thanks to all of you for your thoughts and prayers!!!!
TUESDAY, DECEMBER 27, 2005
I start today's entry on a bit of a sad note. Alex's great-grandpa Roy
passed away today due to the injuries he received in the car accident. Our
thoughts and prayers are with Grandma Neva and family. Grandpa Roy was a
wonderful man. He always had a smile and hug for me whenever I saw him. He
was the nicest, friendliest & happiest man you could ever meet. All of it
was genuine and from his heart. He will be greatly missed. I pray Roy's
family can take comfort that he is home with Jesus, smiling down on the rest
of us and teasing the angels!
We had a quiet day. I worked out, the kids slept in (it's Christmas
vacation!) Later in the afternoon we (the four of us, Norm, Kelly, Alex and
Bri - plus Bri's friend, Becca) decided to go to a movie. We saw Cheaper By
The Dozen 2. It was rather humorous and uplifting for the somber mood of
the day. Alex was a little tired today but his other chemo symptoms have
been fairly minor this go around. I pray the chemo is working and his
symptoms remain like this.
Once again, I thank each and everyone of you for keeping Alex in your
prayers, daily. Prayer is a powerful thing, prayers are how miracles
happen!! Thank you.
BELIEVE
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MONDAY, DECEMBER 26, 2005
We had a wonderful Christmas, I hope you all did too. Christmas Eve was spent going to church and dinner at Roy and Suzie's. Then home to open gifts.
Santa was very good (as usual) to everyone this year. Christmas morning we drove to my parents home in Minnesota and spent the day with family there.
Alex slept most of the day and upon returning home had a slight fever. After a good nights sleep, he seems much better, although still tired, today.
We are doing a better job at keeping on top of the symptom's from the chemo and other than an upset stomach and extreme fatigue, he's doing very well.
He is still, however, having problems with his memory.
We received some bad news over the weekend. Alex's great grandfather, Roy (you may remember me journaling a few weeks ago that Alex had gone to his 90th
birthday party) was involved in a very serious car accident. Slippery roads caused a driver to hit him head on. He was immediately air lifted to Rochester
(they live in Welcome, MN) where he remains. I spoke with Carol (Alex's grandmother) Saturday evening and he was holding his own. I haven't spoke with any
of the family today, but I ask that you keep Roy and his family in your prayers during this time.
I'm looking forward (with great anticipation) to a wonderful new year. New year, new beginnings. This year wasn't totally bad. Alex came home after almost 2
years in the Air Force - that was good! The rest of our family has remained healthy - that's awesome. I've grown in many, many ways - that's wonderful. I've
developed some incredible new friendships - those are great. All in all it's been a growing year. A year of friends, hardships, cancer, trials, courage, strength,
tears, laughter and love. A year I will never forget. The year I met a real hero - my son. As I was reading in a book given to me by the treatment nurse at Duke,
the words to the Mariah Carey song "Heroes" was printed in it - the lyrics go like this - "And then a hero comes along with the strength to carry on, and you cast
your fears aside, and you know you CAN survive. So when you feel like hope is gone, look inside you and be strong, and you'll finally see the truth - that a
hero lies in you." You're my hero, Alex. I love you!!
Please remember to keep Roy and Alex in your prayers!! And as always,
BELIEVE in those miracles!!
(Brianna opened a Dove chocolate today and she showed me the message
printed inside the wrapper - "Miracles aren't limited to the holidays." I know that, but God was just reminding me! )
THURSDAY, DECEMBER 22, 2005
It was a relatively quiet day. Alex and I ran a few errands in the afternoon, but were home the rest of the day. Grandpa and Grandma stopped by before returning home to
Minnesota. It was a good day.
As I was typing in the date for this entry, it really struck me how much has happened in the past few months. There are days I just go through the motions of living,
sometimes it's all a blur, it still seems so unreal. I've learned and speak an entire new language. The language of cancer. I know the statistics of this disease, I
refuse to believe any of them. They don't apply to Alex. For I firmly believe that God is in control. It's been hard for me to give this over to God. If it is His will,
Alex will be healed. I believe he will be healed. I realize how fortunate I've been, how much God has given me. Alex, too, is a gift from God. God knew Alex before he was
born, the path he was going to take here on earth and his purpose.
Alex (and cancer) has taught me more than I could ever hope to teach him. I've learned about courage, humility, compassion, strength, the importance of family & friends,
how material things really don't matter. But mostly how precious time is. I hear people wishing away their lives, waiting in anticipation for a certain day to come. For
their children to be older so they can do this or that, for the weekend, for a special event. Whatever it is, be patient - enjoy the moment, the people. Take your time - for
we don't know how much we have. This holiday season think of Alex and appreciate the time you spend with your loved ones. Put away past hurts - a new year is a time for new
beginnings - new hope - forgive someone (hanging on to anger only hurts you).
This is a very special Christmas for us. Alex has chemo tomorrow and usually he gets sick a few days after treatment. That would put it the day of Christmas. I'm not worried -
it's going to be a good Christmas. I know my Christmas wish is coming true. I know that tumor is going away. Jesus is the Almighty Healer, the Miracle Worker - it is his birth
we are celebrating. Let's not forget that with the commercialization of this day.
I'm not going to journal again until Monday. Alex has chemo tomorrow at 9:30 am. It will take a little longer since he gets the Avastin tomorrow too. Please pray that he doesn't
get sick. I pray that each and everyone of you have a wonderful, Christ filled Christmas. Stay safe and God Bless.
AND REMEMBER - KEEP BELIEVING IN THOSE MIRACLES - THEY ARE HAPPENING EVERYDAY!! PRAY, PRAY, PRAY!!
MERRY CHRISTMAS EVERYONE!!
From, Norm, Kelly, Chris, Nicole, Brianna and ALEX!!!!!!
(enjoy the time with your loved ones!)
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WEDNESDAY, DECEMBER 21, 2005
With Christmas shopping completed, I have to figure out new ways to get Alex
out and about (for a little exercise - and you all thought I was just
shopping all the time!! Seriously, not always (with Christmas shopping to
be done), but a lot of the time it was to get him out of the house doing
something.) So, I'm open for suggestions.
It's really great to see him feel as good as he does right now with this
break from chemo. His short term memory, however, isn't doing as well.
Please keep this in mind when you're talking with him.
I took him for lab work today and then we went and got groceries and picked
Bri up from school. Grandpa and Grandma Schmidt were in town and stopped
over for a while. Then we all settled in for a night of television. It felt
good to be home in the evening. It's been a while.
Thank you ALL for praying for Alex. Prayers work wonders. Prayers make
miracles happen.
BELIEVE in MIRACLES!
MERRY CHRISTMAS
TUESDAY, DECEMBER 20, 2005
The countdown is on, Christmas will be here in 5 short days!! I think I'm
finally ready. It's late again tonight, so I'll be brief. (Norm and I were
busy wrapping the rest of Chris, Nicole & Fawn's gifts so we can get them in
the mail tomorrow. I pray they make it to California by Saturday.)
After watching the Price is Right, Alex and I met Pam and Liz for lunch in
Sioux Falls. We (of course) did a bit of last minute Christmas shopping and
then Alex went with Adam to hang out the rest of the day. The break from
the chemo has helped his cold get better and he's feeling pretty good, not
sleeping nearly as much either. He's just a little frustrated with his
memory. Please pray it will get better.
Nothing more - off to bed!! Thanks to all of you for continuing to pray for
Alex. Christmas is the season for miracles!!
BELIEVE!!
MONDAY, DECEMBER 19, 2005
(HAPPY BIRTHDAY, DENE'!! - you're how old?)
Norm and Alex returned home from the ranch this afternoon. They did a little pheasant hunting this morning. After returning home, we went and picked up my new SUV.
Then the four of us went out to dinner with Kaye, Kevin, Dennis& Gayle.
Alex is feeling pretty good right now. He's enjoying the break from chemo.
I worry a little about his short term memory but I know it will improve when the tumor starts shrinking.
I'll be brief tonight, I need to get some Christmas presents wrapped and in the mail.
Please be safe if you are traveling this week! As always, keep Alex in your prayers and
BELIEVE!!
Miracles are happening!
SUNDAY, DECEMBER 18, 2005
Alex and Norm are still at the ranch, they decided to stay another day.
It's good for Alex to get away. Norm says he seems to do great when he's
there - must be the fresh air or something. I miss him but I know he's
doing well.
One week to Christmas. I'm almost done shopping, finally. I need to get
gifts sent to California - soon. Unfortunately, we aren't going to be able
to get together with Nicole and Chris (and Fawn, Chris' girlfriend) this
year. As most of you know, they live in California. Last year we all met
in Tahoe the week between Christmas and New Year's. Our plans this year were
for New York City, but Alex is scheduled for chemo the Friday's before
Christmas and New Year's. Given that, we weren't sure how he'd be feeling.
Having the kids come here would be a little crowded, since we don't have our
house built yet we don't have a lot of room. Another thought was all of us
going to the ranch, but instead we've decided to take a family trip in March
to somewhere in the Caribbean (my favorite place), destination yet to be
determined!!
Hope all of you are enjoying the holiday season. Another year is past.
Where does the time go?
Please remember to invite the guest of honor to all your holiday
gatherings!! Jesus!! And keep Alex in your prayers!!
BELIEVE IN MIRACLES!!
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FRIDAY, DECEMBER 16, 2005
Alex went to work with Norm in Sioux Falls for a few hours today. Then home
for a long nap. Later, the two of them left to spend the weekend out at the
ranch. Alex is feeling pretty good but I've noticed a slip in his short
term memory. It came back once before, it will again. The guys will be at
the ranch until Sunday so I will not journal again until Sunday evening. As
always, please keep Alex in your prayers!
BELIEVE!! MIRACLES!!
THURSDAY, DECEMBER 15, 2005
(HAPPY
2ND BIRTHDAY, EVAN - WE
LOVE YOU!!)
Norm and Alex went shopping for a few hours today. After they got home, Ryan and Adam picked Alex up to take him "out" for a while too.
I think they were headed over to Adam and Tab's for dinner. I hope Alex eats something. He still doesn't have much of an appetite.
After Norm dropped Alex off he picked Bri up and took her shopping. This is the most shopping he's ever done! I stayed home, still feeling a
little down. God knows - he sent three angels via e-mail my way just when I needed them. Thanks Jackie, Michele and Carol!!
Not much else happening. Although some days are harder than others, I continue to put my faith and trust in God. I know He will get us through
this. "Give your burdens to the Lord, and he will take care of you. He will not permit the godly to slip and fall." Psalm 55:22
Thanks to all of you for keeping the faith, continuing to pray and BELIEVING in MIRACLES!!
WEDNESDAY, DECEMBER 14, 2005
I let Alex sleep in until about 10:00 this morning and then we headed into
Sioux Falls to meet Norm for lunch and a little Christmas shopping. Go
ahead and ask, I know you want to....just what was I thinking shopping with
two men?!? Norm hasn't gone Christmas shopping with me in 20 years. He was
being gracious and said he would help this year. After three hours (and
that included over an hour for lunch) I sent them on their way and proceeded
by myself. Unfortunately, my heart wasn't in shopping so I didn't
accomplish much. I'm not worried, I still have 10 days!
Alex is still without phone! Norm was going to stop and get him one
tomorrow. So please wait a day or so and give Alex a call so he can
"re-add" your number to his contact list. Without my phone I don't know
anyone's number. Today's technology doesn't require us to "think" anymore.
I've decided it's a good idea to write all those numbers down and keep them
in my purse (or some other safe place!)
Alex was feeling "OK" today - not 100 percent. He's still not eating much.
Not even any of the holiday goodies can spark his interest. (Unfortunately
they've got my full attention!)
Good news for our friends Bill and Jackie. Bill was accepted into a
clinical trial with Duke that they can do right here in Sioux Falls.
Miracles are happening all around us!! Our prayers are still with them, God
is listening!!
I had a tough day today. Just a little down. Shopping and Christmas kind of
got to me. I know it's the season for miracles and there's only one thing I
really, really want for Christmas!!
Please remember to take time this Christmas to enjoy. Enjoy the sound of
Christmas carols, the smell of freshly baked Christmas goodies, a child's
laughter, a friends smile. Enjoy your loved ones, especially the/your
children, for that's what it's really all about...a child!!
Please continue to pray to that Child - for my child!! And BELIEVE!!!!
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TUESDAY, DECEMBER 13, 2005
Alex and I stayed home all day today. He slept on and off (not as much as
yesterday) and watched TV. He doesn't have much energy. However, after a
little coaxing, I did get him to walk on the treadmill for a short time.
Later in the afternoon, Rev Kev (our pastor) stopped by for a visit.
The cell phone was unfixable. He felt bad about it but it was just as much
my fault. I told him in the grand scheme of things a broken cell phone is
very minor. I don't know if he knows all your phone numbers, so after
tomorrow if you'd like to give him a call so he can read your number to his
contact list, I know he would greatly appreciate it. (He might not answer
if he's napping, so please leave a message.)
Tomorrow (weather permitting) we're going to try to finish up Christmas
shopping (and go buy a new cell phone!) It rained earlier and now it's
snowing, tis the season!
I continue to have good days and bad days. At times, I still feel like this
is all a dream. The Brain Tumor Center at Duke's slogan is "At Duke, there
is hope." I continue to HOPE, pray and believe everyday that Alex will be
healed. God is listening to all our prayers - please keep praying for Alex!!
HOPE
BELIEVE
MIRACLES
MONDAY, DECEMBER 12, 2005
Alex was
VERY tired today. We got him up for breakfast (which he didn't
eat much of) and then he slept until 12:30 when I got him up for lunch. I did
make him go into Sioux Falls with me (I had a doctor appt) - Norm and I traded
kids at the orthodontist office and when Bri and I returned home this evening
around 8:00 Norm said Alex had been sleeping for about 1/2 hour already. I
guess I'd rather see him sleep than sick. Dr. Keppen said that some people on
chemo get tired beyond any fatigue we can imagine. He also has "zero"
appetite. It's really hard to get him to eat. Fortunately he likes the Ensure
and Boost nutrition drinks. I don't know what else to give him.
We did have a cell phone mishap today. Alex's cell phone was in his pants
pocket (I don't check pockets) and I washed it (I'll check Alex's from now on!)
Oops. Norm is drying it out by baking it in the oven at a low temp (this
usually works - we can't count the number of times Norm has dropped his cell
phone in the lake taking the boat in and out while out fishing!) Anyway, I just
wanted everyone to know in case you try to (or have been trying to) get a hold
of Alex in the next day or so. If the drying trick works, he should be back in
operation tomorrow. If not, we'll have to go buy a new cell phone.
Bri and I got a little more Christmas shopping done this evening. It's
coming along slowly. I'm really not too worried, I'll get done what I need
to. This year I have a new focus on the holiday, I haven't stressed out about
decorations, baking, parties and the such (maybe a little with shopping, but if
you know me at all - not even with that!) Keeping it simple and enjoying the
meaning of the season sure keeps the stress rate low!!
Remember the reason for the season!!
Jesus' birthday!!
Relax, enjoy,
and believe in
miracles!!
BELIEVE!!
SUNDAY, DECEMBER 11, 2005
The chemo is catching up with Alex a little. Although not very sick, he's
really tired. After church, he came home and slept for about 4 hours while
Brianna baked Christmas cookies (I helped a little), I cleaned and did
laundry and Bri & I watched the Vikings win (again, yeah!!) Brianna had
dance and cheer practice (from 4:30 to 8:15) so I thought it might be good
for Alex to get out (mostly so he would sleep tonight.) We headed to the
mall but were pretty unsuccessful as we just didn't know what to buy anyone.
When we would find something, they never had it in the right size or color.
However, we did discover that late Sunday afternoon the mall wasn't very
busy. Then we headed to Best Buy to check out I-pod's and MP3 players. We
ran into my friends Lisa and Dana, who were more help then the people
working there (as I know nothing about these gadgets!) but we left empty
handed. All in all it was a pretty unsuccessful shopping trip.
This coming week is Alex's "bye" week. (Weeks 3 and 6 of the cycle he has no
chemo.) He's doing well, but I know he's looking forward to having a week
off. He should be feeling pretty good by the end of the week and would
probably like to get out some (hint, hint). Although I cherish every minute
we spend together, I do think he gets a little tired of hanging out with his
mom all the time!
Once again, please keep Alex in your prayers!! God is so good, I know he is
listening!
BELIEVE
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SATURDAY, DECEMBER 10, 2005
Well the new meds Dr. Keppen recommended for Alex seem to be doing the job.
He had a good day today. We didn't do much, the three of us (Alex, Bri and
I) went into Sioux Falls for a little vehicle shopping and lunch (we avoided
the mall area). Brianna had to baby-sit tonight so Alex and I decided to
rent a few movies and stay home.
Thanks to all of you who check this website regularly to see how Alex is
doing. It means so much to me (and Alex). Thank you, too, for the endless
prayers. I know they are working, God is listening!! Miracles are
happening!!
BELIEVE
FRIDAY, DECEMBER 9, 2005
Alex's treatment went well today. It took just over two hours, which was a
lot shorter than we anticipated. I'm hoping the stronger nausea medicine
will work better. If last week was any indication as to how he will
tolerate this chemo, he doesn't get sick the same day, but on and off for
the next three days after. He said he felt fine most of the day today but I
did notice he was quite pale and didn't have much of an appetite.
After treatment, Alex and I went to lunch and then did a little vehicle
shopping (even though I got mine back, it's breakdown was caused from a
frozen something or other having to do with the oil pump - I know, I know -
that's women's talk for "ok, it's fixed, can it get me to the mall?") After
picking Bri up from school and a short break at home, the three of us did
actually head to the mall for a little Christmas shopping (Alex wanted to
get out of the house). (I'm such a sucker these days. I can't believe they
talked me into going to the mall on a Friday night this close to Christmas!)
Alex and Bri ditched me for about an hour to do a little shopping on their
own. We grabbed some pizza and headed home early as Alex was kind of tired.
I purchased a few gifts but still have a long way to go, Christmas is coming
fast. Bri has taken over Nicole's old job and doing all my wrapping for me
(I really, really don't like to wrap presents - I'm sure gift bags were
invented with me in mind!)
On the way to the mall, I realized we were going to miss Three Wishes. I
frantically called Dene' and she TiVo'd it for me. (Thank you Dene') I feel
bad I wasn't able to watch. I hope most of you were able to tune in.
I hope all of you are taking time to enjoy the holiday season. Remember,
'tis the season for miracles!!!!!! Please keep Alex in your prayers. I
know his miracle will happen!!
MIRACLES HAPPEN! God is in control!
THURSDAY, DECEMBER 8, 2005
Alex felt really good today. After lunch he went bowling with Ryan, out to
dinner with Adam and Tab and then to the Comedy Club with Dusty, Adam and
Tab. I was glad he was able to get out today as he has treatment tomorrow.
Treatment is at 9:30 a.m. and should only last about three hours this time
(his first treatment took 4 hours - they start out giving the meds at a
slower rate and speed them up a bit each time until they get to a certain
length of time and I can't remember what that is.) Because Alex got sick
from the last treatment, Dr. Keppen (oncologist) is going to try a stronger
nausea medicine (in his IV prior to the chemo) then what Duke had used and
recommended. Hopefully this will help even more and he won't get (as) sick.
Bri had to dance at half time tonight at the girls basketball game at
school. Afterwards, her and I ran to Shopko to buy ornaments for a
Christmas tree we bought for her in North Carolina. Believe it or not, we
only went into one store the entire time we were there. After dinner one
evening Alex, Norm and I were walking back to the hotel when we ran across
this unique little store and I "made" them go in. It had the cutest little
feather Christmas tree's in it. They stood about 4 feet high and they had
pink ones and white ones. Alex's very first comment was it was a perfect
tree for Brianna. They had some other kinds I thought were cute too but Alex
insisted the pink feather one would be the one she would like. Sure enough,
when it arrived I explained all the other trees to her and she said the pink
one is the one she would have wanted. Alex was right, I'm so glad I let him
pick it out. It's a special tree and it made a connection between the two
(Alex & Bri) that is truly heart warming for me!! (Most of the time they act
like they don't like each other! Siblings!)
Please continue to keep Alex in your prayers.
BELIEVE IN MIRACLES!!
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WEDNESDAY, DECEMBER 7, 2005
( Happy
Birthday Brent!! )
What a morning. Norm has been using his brother's truck (diesel) and in
this delightfully cold weather the fuel gelled up. He had been trying to
get it running for a day now without success. This limited us to one
vehicle, mine (since Alex isn't suppose to drive, his car is out at Roy and
Suzie's). I was going to go in early (6:15 a.m.ish) to work out this
morning so I could be home in time to take Bri to school when my truck
decided to act up. Not exactly sure what's wrong but it had to be towed.
(Remember previous journal entries - I've been vehicle shopping - just
hadn't found the "right" one yet.) Therefore, Alex and I were forced to
stay home today. Ok, let me rephrase that, "I" stayed home all day - Adam
came and picked Alex up for lunch, a little road hunting and later to "hang
out" over at his house. After a bit of whining, the boys invited me along
but I graciously declined. The day actually worked out well for me
(although I was forced to miss a dentist appointment - darn.) I spent the
afternoon all by myself - a rarity now days. I took advantage and caught up
on some e-mail, phone calls and web surfing. (It's way too cold to go out
anyway!)
Alex was feeling good this morning and was in a great mood (which always
makes for a good day for me!) He doesn't have much of an appetite these
days though - it's getting almost to the point where we have to force him to
eat. Sure is a far cry from the days on the Decadron. However, this
worries me some, I don't want him to start losing too much weight.
Especially since this latest chemo seems a little harder on him than the
Temodar was. His face has gotten considerably thinner now that he is no
longer on the steroids (I need to put some new pictures on the website.)
Dr. McGraw (radiation oncologist) said it could take months for it to go
down. He still struggles with a rash and acne brought on by the steroids,
but that too is getting better. It's hard to say really how his short term
memory is. It's not what it was, but not as bad as it's been in the past.
He does really well for the most part - nothing that a day planner, sticky
notes or a palm pilot can't take care of.
I'm off to watch a Christmas program on TV with Bri. But first I want to
put in a plug for everyone to tune into Three Wishes on Friday evening.
They are doing a follow up on the family from Brookings (I spoke of Bill and
Jackie in previous journal entries - Bill also has a brain tumor and was in
the same Air Guard unit as Alex. Bill was the one I spoke of who recently
received a "miracle.") The show may be taken off the air. If the number of
people watching Friday is up, NBC may decide to keep it going. Tune in if
you can and keep Bill and his family in your prayers too!!
As always - keep praying. That's how miracles happen!! I know Alex will
receive his miracle. BELIEVE!
TUESDAY, DECEMBER 6, 2005
Alex felt a little better today. We stayed home most of the day (it was too
cold to go anywhere!) He's been sleeping a lot more (Dr. Keppen said this
was normal for someone on this kind of chemo). We did brave the cold to run
to the bank and the grocery store later in the afternoon, other than that we
had a very quiet day.
I can't believe Christmas is only a few weeks away. I've only just started
shopping. Christmas certainly has taken on a different meaning for me this
year. I hope all of you, during the hustle and bustle of this season,
remember it's true meaning. The birth of our Lord and Savior, Jesus Christ.
It is through His sacrifice that all of us are healed. It is through His
grace that Alex will be healed. Please keep praying for Alex's healing!!
God Bless and BELIEVE!!!
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MONDAY, DECEMBER 5, 2005
Well, Alex didn't bag that big buck this year (he gave it one last "shot"
(no pun intended) at the ranch yesterday). There's always next year!!
We saw Dr. Keppen (oncologist) today. Duke had already been in contact with
him about Alex's treatment plan. They are hoping for no more snowstorms so
that Duke can get the meds here by Friday. Alex is experiencing a few side
effects from this chemo. Getting sick occasionally and higher blood
pressure. He's also much more fatigued. As much as I hate to see him have
to deal with these side effects (I know he was very fortunate not to have
gotten sick from the first chemo), I know it's only temporary. I have a
really good feeling about this treatment, I know it's going to work!
We finally got Alex that new winter coat today, none too soon!! North
Carolina wasn't bad - 60's during the day. I'll take that over this any
day!! Everyone stay warm and stay safe. It's cold out there!!!!
Keep praying! I know his miracle will happen!! God is Great!!
BELIEVE!!!
SUNDAY, NOVEMBER 4, 2005
Not much to report today. Norm and Alex took off for the ranch around 10:00
this morning. Alex was feeling good when he got up, other than a bit of a
cold. They should be home sometime this evening. Alex has an appointment
with Dr. Keppen (his oncologist) tomorrow.
Brianna and I had a wonderfully relaxing day. Just the two of us. We
watched Christmas movies, a little football, went through all the ads in the
newspaper and put together Christmas lists. Although I was a bit worried
about Alex going to the ranch, it worked out well as it gave Bri and I some
mother/daughter time.
Just keep praying. My faith is in the unfailing love of God. I know he is
listening to all of our prayers!!!
BELIEVE. FAITH. HOPE. MIRACLES!!!!
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SATURDAY, DECEMBER 3rd, 2005
Good news and bad news. The good news is we arrived
home safely this
evening and Alex didn't get sick during the trip. The
bad news is he got
sick after we got home. It was a bit of a surprise to
all of us when he got
sick as he was feeling good all day. It has been a
very tiring day and he
went to sleep shortly after becoming ill so hopefully
tomorrow will be
better.
It's good to be home. I missed Brianna very much.
She's doing fine and just
like a teenager, she came home tonight (after the
competition), said hi,
grabbed a bite to eat and left again for the evening.
When all is going well in life, it's so easy to take
time for granted. Life
gets busy and we don't take the time to appreciate the
special moments God
gives to us every day. I'm learning to slow down,
recognize and appreciate
those moments. I only wish it hadn't taken Alex
getting sick for me to do
so. But at least I am doing it now.
My advice (like you were all asking for it!!) - slow
down, enjoy the ones
you love. Enjoy the moment!!
I know this treatment is going to work!! Please keep
praying for Alex!!!!
BELIEVE.
FRIDAY, DECEMBER 2, 2005
Alex made it through his first chemo/avastin treatment today. It took
approximately 4 hours. Although he feels great right now, we have decided
to stay in North Carolina one more day. The next 24 hours could bring on any
number of side effects and being sick while traveling just isn't any fun.
Another reason for staying is because we fly into Omaha and then have to
drive home (3 hours). We're told it is snowing there again, so rather than
drive in snow in the dark we opted to wait until tomorrow.
Thankfully, Heather and Kaye (plus Brielle and Evan) are coming to stay with
Brianna and help her get ready for (and watch) a cheer and dance competition
tomorrow. (Sorry I won't be there hon!) We should arrive home early
tomorrow evening (Saturday.) (I know someday she will understand why I
couldn't be there.)
Alex will continue treatment under Dr. Keppen's care in Sioux Falls.
Treatments will be on Friday's - weeks 1,2,4, & 5 with a break from
treatment on weeks 3 and 6. If he tolerates this treatment well, he will
continue this rotation for up to a year with MRI's and trips to Duke every 6
weeks. If not, we will reevaluate and try something else.
The nurse in the treatment center told me laughter was one of the best
medicine's. (We had a really good laugh with her, poor woman, didn't realize
I was Alex's mother, let's just say she got quite a ways into a "sex during
chemo" talk before I interrupted her, I'm sure you can figure out the rest -
it gave my ego a boost for the day!) I've been trying to keep Alex's spirits
up all week (although he's doing quite well on his own) - I've been called a
"dork" more times than I can count. I don't mind, I know it's his way of
saying "love you mom." We were also told not to let him sit in front of the
TV all day. His biggest complaint is not being able to drive. I know he
feels bad expecting me to run him around all the time, even though I don't
mind. His friends have been awesome at getting him out, so even though his
memory isn't as good as it was and he's doing treatment, please don't be
afraid to ask him to do things or call with a joke.
Just being here at Duke makes you realize you are not alone. So many other
suffer from this crazy disease too. Every time I saw another family at the
Brain Tumor Center I realized they were going through much the same thing we
were. Most were older and I found myself jealous that they got to at least
live a good life until now (married, kids, grandkids, etc). Alex is so
young, it's so unfair. Then I would see the pictures and read the stories
of the young children with cancer and had to recount my blessings that he
had 22 great years before being afflicted with this disease. I know I've
said this before, but someone has beaten every single type of cancer and
live a fulfilled, long life. I KNOW Alex will be one to beat this. Trust
me, the rest of the kids will want him to take care of their "dorky" mother
in her old age. I'm counting on him!!
As Alex treks along his road to healing, I'm on a spiritual journey I never
imagined I would be on. Having a sick child (at any age) is so very
difficult (especially with cancer.) Faith is how I cope. So once again, I
ask that you keep Alex in your prayers daily. I know God is listening and I
thank all of you for the endless prayers!!
MIRACLES ARE HAPPENING!! BELIEVE!!
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THURSDAY, DECEMBER 1, 22005
The facility (not Duke) that Alex was to have his MRI done at this morning,
(Duke was full) was not able to do the MRI because of lack of medical
records (they needed more information about the type of shunt he has).
After 3 1/2 hours, we were told Alex had a new appointment scheduled at Duke
hospital for this evening. We headed off to the clinic for some lunch.
After lunch, Alex had a 3 1/2 hour neuropsychological evaluation. He wasn't
very thrilled about it but this will tell us if the tumor has affected any
of his cognitive functions.
Although tiring for all of us, it's been especially so for Alex. I worry
that this is a symptom of the tumor growing. I know the new treatment will
work and I need to be patient. More waiting.
I'm now a little frustrated about his care in Sioux Falls. Norm and I were
led to believe that his radiation was with a new machine that delivers
stereotactic radiosurgery. After speaking with the doctors here, we believe
that isn't so and that he actually had total brain radiation. This can
cause cognitive thinking problems in the future. We weren't explained any
of this at the time. I do recall reading it somewhere but was not told
about it. However, I do feel much more informed now and very good about the
treatment plan.
We are off to dinner now and then to Duke hospital for his MRI tonight at
8:00. They need an MRI no more than 7 days old before beginning treatment
and the one he had in Sioux Falls will be 10 days old - only 3 days off.
His first treatment is tomorrow at 8:30 a.m. - it will take about 4 hours.
He did so well with the last treatments, I pray he will do well with these
too!!
I trust in God and the power of prayer. Please continue to pray for Alex's
healing.
PRAYER. HOPE. FAITH. BELIEVE. MIRACLES!!!!!!
WEDNESDAY, NOVEMBER 30, 2005
I've been very impressed with Duke so far. Today, (although quite intense
and long) was spent meeting with different support people (the things I felt
were missing in Sioux Falls). First, we met with the clinical research
nurse that has been assigned to Alex. Then with a social worker, she was
very informative and helpful giving us ideas about mental health care,
financial assistance, support giver care, etc. Next, a child life
specialist met with us to give us ideas for support and information about
helping (mostly) Brianna with her concerns (since she is the sibling living
with Alex at this time.) And last, the clinic research coordinator for
Alex's case. She's the person who does the overall coordinating. After
that, (5 hours later) Alex had some lab work done and then we grabbed a bite
to eat.
Nicole had to return home (California) late this afternoon. Alex and I
grabbed a nap while Norm did computer work. We don't have much planned for
this evening, dinner and probably early to bed. Tomorrow, Alex has an MRI
first thing in the morning and neuropsychological testing (approx. 3 hours)
scheduled for the afternoon. Friday, he will have his first chemo
treatment. It will take approximately 4 hours. We are praying he won't get
sick as we hope to still fly home on Friday.
Alex's spirits are good. He seems to take everything in stride. His
strength and courage continue to amaze me. Reading the release for entering
the clinical trial was scary to me, he didn't show us any emotion - just
signed it. The trial he is in is a "second phase" clinical trial. (First
phase trials determine dosages for weight and stuff like that. Third phase
trials are blind placebo studies - they don't do those here.) This
particular trial has been going on since April of this year. The release
form stated there were approximately 68 people participating in it at this
time but we have no statistics of results to date. The doctors have told us
they have had very good results with this combination of drugs. (These
drugs are FDA approved for treating colon cancer, however, they are not
approved for brain cancer so we aren't sure if insurance will cover one of
the drugs.) I remain very hopeful.
Norm and I are doing well. Taking one day at a time. Yesterday was rainy
all day here, today the sun was shining. It made for a better day.
Something inside me told me the MRI results we were told in Sioux Falls
"just didn't seem right." The doctors here do not agree with the reports
from Sioux Falls. It pays to get a second opinion. It feels "right" here.
I know they will never give up and will change treatments if they don't see
results. Please continue to keep Alex in your prayers. I know God is
listening.
BELIEVE IN MIRACLES!!
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TUESDAY, NOVEMBER 29TH, 2005
We just returned from Alex's first appointment. The doctors and staff here
are absolutely wonderful. However, we did get some bad news. It seems the
tumor has gotten a bit more aggressive on the left side. Because of this,
the doctors want to get Alex started in a clinical trial immediately. We
will be staying in North Carolina until Saturday.
They want to start a six week rotation of a combination of drugs - CPT-11
and Avastin. He will have his first treatment intravenously on Friday here
at Duke. The doctors are coordinating with our oncologist (Dr. Keppen) in
Sioux Falls to arrange to have further treatments done there (Sioux Falls)
with an MRI every six weeks. At the end of each six week rotation, we will
return to Duke for a checkup and evaluation to determine if this treatment
is working or if we need to try something else.
Alex is doing great. He is remaining strong and upbeat in light of this new
information. I'm trying to keep it all in perspective, just because this
first treatment didn't work like we hoped doesn't mean the next one won't.
The doctors here are great and tell us there are many options at this point.
Alex and Nicole are out for a walk right now. When they return we are going
to find a movie theatre and take in a movie (if we can agree on which one to
see!) Maybe some shopping too as I didn't bring enough clothes along till
Saturday (I was thinking positive! - still am!) Alex's appointments
tomorrow start at 8:45. They are doing lab work and neuropsychological
testing tomorrow.
At this point we are just headed in a different direction but I know we will
end up in the right place. Please continue to keep Alex in your prayers!!
God Bless!
I still BELIEVE in MIRACLES!! God is the Great Physician. Alex will be
healed!!
MONDAY,
NOVEMBER 28TH, 2205
We have arrived!! After a long day of traveling (we
flew out of Omaha), Norm, Alex and I safely made it to
Durham, NC at 8:00 p.m. (EDT) We left Sioux Falls at
8:00 this morning during a snowstorm but as we drove
further south the weather wasn't bad at all. We
arrived in Omaha several hours before our flight was
scheduled to leave.
It's been a tiring day (traveling always is). After
room service and some football, Alex is sound asleep.
Norm and I are waiting up for Nicole to get in. She
should arrive around 11:30.
Alex's first appointment isn't until noon tomorrow.
Our hotel is only a few minutes away from Duke. That
gives us time in the morning to go over and figure out
where we need to be.
Alex is feeling good. His short term memory is still
not what it was. It got better before, it will get
better again. Duke is a place for hope. I believe this
is where Alex is meant to be. Please keep Alex and the
doctors and staff here in your prayers. Together in
prayer and medicine, Alex will be healed!!
Believe in miracles!
SUNDAY, NOVEMBER 27TH, 2005
Today Alex went with his dad (Tim) to Welcome, MN to
celebrate Alex's
great-grandfather's (Roy Rosenberg) 90th birthday.
Happy Birthday Grandpa
Roy!! Upon returning home, he happily watched
the Eagles beat the Packers
(sorry Norm!)
Our day was spent watching weather reports and doing
laundry. Right now we
are under a winter storm warning. Since we are
flying out of Omaha, my
friend, Lynn, is watching the weather down there for
us. Our plan, at this
time, is to drop Brianna off at school in the morning
(she is staying with
friends) and head out of town right after.
I am very anxious to go. The doctor Alex will be
seeing is
Dr. Henry
Friedman. I was looking at Duke's website this
evening and they have a
picture of him, it's kind of nice just knowing what
the guy looks like (if
you know what I mean.) The website for the Brain
Tumor Center at Duke is
very inspiring. I especially like the
"Voices of Hope." Different
patients, friends, relatives and staff have written
their thoughts about
"What Hope Means to Me." One women's
description I particularly liked went
like this, "Hope is trusting the Lord with all
your heart, and knowing HE is
in control of the outcome!" Hope to me is also
BELIEVING my son will be healed!!
Please keep us in your prayers as we journey first to
Omaha in bad weather
and then on to Durham, NC. I will continue to
journal and let all of you
know how Alex is doing and what the doctors say.
Where there is faith, there is hope, where there is
hope - miracles can
occur!!!
HOPE,
FAITH, BELIEVE,
MIRACLES!!!!
God Bless!!!
Dr. Henry
Friedman -
Alex's Doctor at Duke
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SATURDAY, NOVEMBER 26TH, 2005
Alex opted not to go to the Parade of Lights last
night. Instead, Tara
picked him up and he spent some time at Peter and
Tara's home. The parade
was very good and Brianna did a great job.
Today he took it easy. This evening Adam picked
him up and they were going
out for dinner (I'm not sure who all went.) I've
been trying to get ready
for our trip. Tonight (Brianna had to baby-sit)
Norm and I put up the
Christmas tree. Tomorrow Brianna and I will do
some decorating around the
house and packing (she will be staying with friends
while we are gone.)
We are driving to Omaha and flying out of there.
There is a winter storm
watch out for tomorrow afternoon into Monday so I pray
the weather is not
bad for our drive.
Since Alex didn't do much today, it's hard to monitor
how his memory is
doing. I think it's a little better. Please keep
those prayers coming. I
know he will beat this.
God Bless!!
Miracles happen!!
THURSDAY, NOVEMBER 24TH AND FRIDAY, NOVEMBER 25TH,
2005
I hope everyone had a safe and filling Thanksgiving.
I know we did. After attending a surprise 30th
birthday party for my nephew Andy in Welcome on
Wednesday night, we spent the night at Jason and
Heather's in Fairmont. Thursday (Thanksgiving)
was spent at my sister Kim's home, eating, playing
with kids, watching movies and visiting with friends
and family.
My good feelings from Alex's doctor appointment on
Tuesday were short lived. For some unknown
reason, Alex's short term memory has started to get
bad again. We have decided not to contact the
doctors here in Sioux Falls but wait until his
appointment in North Carolina on Tuesday to ask why
this may have happened. It seems to be getting
worse, so if you talk to him and he doesn't remember
or says something that may not make sense to you,
please keep this in mind. I have to wonder if
it's from going off the steroids (which were to help
swelling in the brain.) He's been off of them for a
week and a half. Whatever it is, please pray that it
is only temporary.
Alex is spending the day (Friday) with Norm at his
office in Sioux Falls. Tonight we are going to
the Parade of Lights in downtown Sioux Falls as
Brianna is in the parade.
This new development has been kind of tough for me
however, God continues to fill us with hope and
courage. I know we are headed in the right
direction. I know Alex will be healed. Please remember
to keep Alex in your prayers always.
God Bless!!
"For I know the plans I have for
you," declares the Lord. "Plans to
prosper you and not to harm you, plans to give you
hope and a future." Jeremiah 29:11
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WEDNESDAY, NOVEMBER 23, 2005
We didn't do too much celebrating last night.
Since Alex has been off the
steroids, he tires out very easily. He's
sleeping about 12 hours a day now,
probably catching up from hardly sleeping at all the
past few months!
We are heading to Minnesota for Thanksgiving at my
sister Kim's house.
We'll be home tomorrow evening as Brianna is very
excited to be in the
Parade of Lights with the Sioux Falls Water Ski club
on Friday in downtown
Sioux Falls.
Alex had a relaxing day today. We're getting
ready to head out. Hope all
of you have a wonderful Thanksgiving holiday. We
have so much to be
thankful for this year!! (Actually, one thing I
am thankful for is we will
be spending this Thanksgiving in a real house. The
past two years we have
gone to Texas and Louisiana in our motor home to be
with Alex over
Thanksgiving. Not that our motor home isn't
nice, but not having to cook a
turkey in a motor home will be a delight. Heck,
not having to cook at all
is a delight for me (you may have noticed)!!!)
I thank God the tumor is shrinking. I thank God
for all our friends, family
and everyone else who have sent prayers and support
our way. Have a blessed
and safe Thanksgiving!!
Keep those prayers coming!!
BELIEVE. HOPE. FAITH. MIRACLES!!
TUESDAY, NOVEMBER 22, 2005
I'm sure you have all been anxiously awaiting today's
update. Well....GOOD NEWS!! The
tumor has shrank slightly (although I would have loved
to hear it was totally gone, I'm very pleased with
this - we are headed in the right direction!!)
Dr. Asfora (neurosurgeon) couldn't tell us
exactly how much smaller it was but there was a
definite difference. The MRI showed dead tissue
in the center - partially from the surgery/biopsy,
partially from the stereotactic radiosurgery
(radiation) killing the tumor. The
radiation will continue to work over the next few
months - so the tumor "will" keep shrinking.
His next MRI is scheduled for February.
The plans to continue treatment at Duke are still a
go. Dr. Asfora highly encouraged us to get Alex
into a clinical trial. We will be leaving on
Monday (November 28th) and have appointments at Duke
on the 29th and 30th.
Tonight's plans are a family celebration (before
Bri's cheer practice.) We truly have a lot to be
thankful for this Thanksgiving. Thanks to all of
you for keeping Alex in your prayers. To steal a
phrase from Jackie - God is with us!!
We still have a journey ahead of us, but the hurdle
just got a little lower. I know with God's help the
tumor will disappear. Please continue to
keep Alex in your prayers.
Believe - miracles are
happening!
MONDAY, NOVEMBER 21, 2005
The guys got home late this evening. Alex didn't
get his big buck. He said he saw a few small
ones but was waiting for the "big one."
He had a good weekend. Nice to get away.
Tomorrow is the post-treatment MRI. Alex goes in
for the MRI at 8:00 a.m. and then has a doctor
appointment with Dr. Asfora (neurosurgeon) at 12:45.
I will try to post the results ASAP as I'm sure most
of you want to know. This MRI will be sent to
Duke so they have it when we are there next week.
I am very positive that we will get good news. I
can't thank all of you enough for the prayers,
positive thoughts and support you have given Alex and
our family during this time.
No sense in worrying. God has everything under
control!! Please keep praying for Alex's
healing.
"Be anxious for nothing, but in everything
by prayer and supplication, with thanksgiving, let
your requests be made known to God."
Philippians 4:6
We
are all praying for you Alex and we all love you!!!!
SATURDAY & SUNDAY - NOVEMBER 19TH & 20TH
The boys haven't exactly
been in touch with us girls back here at home this weekend. I spoke with
Alex briefly this morning (Sunday) and he told me he did get a doe. His
first deer - congratulations! He still has dreams for that big buck so the
guys decided to stay and hunt all day today. I haven't been able to get in
touch with them so I'm not sure how he did today. I'm hoping all is
well.
Brianna and I spent our weekend relaxing and enjoying time with
each other and friends. Friday evening we took Peyton to the new Harry
Potter movie and Saturday evening we went out to dinner with Michele and Maci
and then did a bit of shopping. Today after church we picked up Peyton and
Dalton and spent the afternoon and evening with them.
I met a
wonderful new friend tonight. Her name is Jackie and I mentioned her
husband, Bill (who is also suffering from a brain tumor) in my
previous journal entry. He has received wonderful news and renewed hope for
healing. We spoke for the first time on the phone this evening and hit it
off instantly. Her faith in God and enthusiasm for life are truly
encouraging and contagious. I look forward to getting to know her and her
family better and will keep them in my prayers.
Speaking of prayers,
please continue to pray for Alex. The post treatment MRI is Tuesday. I know
in my heart it will be good news!!
Believe in
Miracles!!
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FRIDAY, NOVEMBER 18, 2005
Norm and Alex went out to the ranch today. After
picking up "supplies" at
Sam's, they headed out of town in our motor home since
there was "no room at
the inn." (The lodge (ranch) was full of
hunters for the weekend.)
I spoke with Alex tonight and he said he did a little
pheasant hunting this
afternoon and a little fishing. Both were
successful and he was just
getting ready to clean birds and fish when I talked to
him.
Tomorrow he's going deer hunting. In all the
years Norm has taken Alex deer
hunting, Alex has never gotten a deer. He had a
good day today, hopefully
it will carry on into the deer hunt as well.
He's feeling good. I'm feeling very hopeful.
Another man from the Alex's
Air Guard unit, who is also suffering from a brain
tumor, received great
news this week. Thinking he was out of options
and preparing for the end, a
new treatment was found that offers much hope.
Bill received his miracle.
I know Alex will receive his too. God is the
Great Physician. A healing
and wonderful God!!
Please keep those prayers coming!!
Miracles happen!!
THURSDAY, NOVEMBER 17, 2005
After a leisurely morning, Adam called and got Alex
out of the house most of
the day. They took a trip up to Brookings to get
some tires and then did a
little road hunting on the way home. You know
the last time those two (and
Callen) went hunting in that direction we ended up
with a new cat - long,
funny story - ask them about it some time! (As they
were leaving I realized
Alex needs a new coat - I'm not sure what happened to
his winter coat during
our move. The past two winters he lived down
south so he didn't need it -
it's a bit colder here than Texas and Louisiana -
another reason to go
shopping - woohoo!)
I've really noticed the absence of the steroids (this
is his first week
without them). He's a little more tired,
sleeping longer - that's good.
His appetite has decreased too. He's lost some
weight. Those steroids are
nasty little drugs. Good for what they need to
do but the side effects are
tough.
I had a chance to catch up with Nicole today, we
talked for quite a while.
I miss not having her here. She's going to meet
us in North Carolina at the
end of the month. It will be good to see her
again.
As always, please keep Alex in your prayers!!
Believe in Miracles!!!!!
WEDNESDAY, NOVEMBER 16, 2005
Nothing new or exciting today - and to me that's good!
Alex and I stayed
home all day. After the Price is Right, (one of
Alex's favorite shows!) we
watched a movie, had lunch and I did laundry while
Alex relaxed. He's
feeling pretty good these days. His knees still
bother him some but are
getting better.
I think he's a little bored (I just cherish the time
together!) He doesn't
like to read and I can't talk him into working out
with me, so we tried to
think of other things to do and short of going to a
movie or shopping came
up with no good ideas. (We'll take any
suggestions.) We are going to get a
start on Christmas shopping (he said he'd help me)
just in case we have to
spend some time in North Carolina.
Prayer is a powerful thing. I look at all the
good that has come our way
and know that it is from all of you continuing to keep
Alex and our family
in your prayers. I know the MRI next week will show
Alex is healed. Your
prayers mean so much to me (and Alex). Thank you
all and God Bless!!
Believe in Miracles!
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TUESDAY, NOVEMBER 15, 2005
We had a very quiet day today. Norm is still at
the ranch and with the
weather the way it is (cold, rainy, snowy, windy and
windy!) Alex and I
didn't do much today. I cleaned and ran a
few errands and Alex just
relaxed.
Next week is Thanksgiving already. The Monday
after we leave for North
Carolina. The time has actually gone by quickly.
Christmas will be here
soon. I'm sure you all know what I want for
Christmas! Please keep praying
for Alex's healing, I know I'll get my Christmas gift!
God Bless!!
MONDAY, NOVEMBER 14, 2005
I didn't make Alex go workout with me this morning.
Since there was no
school we all slept in and when I left the house he
was still sleeping and I
didn't want to disturb him.
After lunch we headed to the mall to buy a baby gift.
Our friends, Russ &
Brandi, welcomed a beautiful baby girl (Laci Leigh -
don't you just love her
name - she has a big brother named Logan) into the
world last week. We
visited with Brandi for a while and then dropped Alex
off at Tara & Peter's
to watch the football game. Bri and I stopped in
to see Lance and Christy
(I got another baby fix holding Teagan) and then
headed to Ace Hardware to
buy a snow shovel. Ours are all in storage and
the forecast says 2-4
inches! Our purchase probably guarantees us not
to get any!! (I hope
anyway - Bri wants it to snow!)
Alex had a good day today, not much else to report.
Still anxiously waiting
for the MRI. Please continue to pray for Alex's
healing.
Believe in miracles!!
SUNDAY, NOVEMBER 13, 2005
Not much happening today. Norm, Alex and I went
to church (Brianna stayed at a friends house last
night), out to lunch and then home for an afternoon of
football (the Vikings won again, yeah!!!- so
did the Packers - the Eagles play Monday
night). Kim and Mic were in town visiting Lance
& Christy (and family), they stopped for a visit
before heading home to Minnesota.
Norm took off for the ranch so Alex and I decided to
head to Sioux Falls and look at houses and lots (we're
currently homeless - well sort of). We didn't
find much. We ended up picking Brianna up,
renting some movies and heading home. There's no
school tomorrow in Brandon (teacher comp day) and I
have a late workout scheduled (9:00 a.m.) so I'm
trying to talk Alex and Brianna into coming along with
me (their excuses in the past were "it's too
early in the morning!) Anyone care to make any
bets as to whether I accomplish that or not??
Alex has been a little down in the dumps lately.
He gets quiet and doesn't say a whole lot when he's
like that. I try to keep him upbeat and positive
but it's hard. I miss the less serious
Alex. The jokester with the sense of humor.
I know he'll be back but I sure could use his help
right now! I really hope I can get him to
come work out with me in the morning. Even if he
just walks for a while on the treadmill, a little
exercise - get those endorphins flowing - every little
bit helps.
Each and every day I try to count my blessings.
Lately, around the Sioux Falls area there have been a
lot of teen deaths in automobile accidents. Each
time I hear of one my heart goes out to the parents
and families of these children. Brain cancer is
no picnic, but I have Alex here and I
have hope. Their children were
taken from them "just like that!" I
have hope for a cure. I cherish every moment,
every day I can spend with my children. I have
learned not to take things for granted, to say good
morning, good night and "I love you" every
chance I get. They are my precious gift from God
and God is in control.
HOPE. BELIEVE. PRAY.
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SATURDAY, NOVEMBER 12, 2005
It was a very busy day and I'm
exhausted. Brianna's dance and cheer team hosted
a competition in Sioux Falls today.
Brianna's club teams didn't compete but did an
exhibition performance (her high school team did
compete - however, I'm not sure how they did.)
Alex came and watched her cheer team and one dance
performance. He hadn't seen her perform in years
so it was nice he was able to come.
After spending the day at the competition, we went to
the fall banquet for the Sioux Falls Water Ski Club.
Alex skied on the water ski team in 2000 and 2001
until he hurt his back (he still has a lot of friends
on the team). Brianna joined this past summer
and absolutely loves it. Where as Alex skied on
the bottom (with girls on his shoulders), Brianna is
the girl on the shoulders and climbs the pyramids
(yes, it was a bit nerve wracking for a mother at
first but I'm used to it now!) The SF Water Ski
club is a big family and they have been so supportive
during this time. Jimbo (the director) put
together a video of the past year for the banquet.
Alex had his first surgery the Thursday before Labor
Day (which is the last ski show of the season) and in
the video you could hear Jimbo's prayer before the
show asking a blessing for Alex. They dedicated
that show to Alex. Since he was in the hospital
at the time, I was really glad he was able to come to
the banquet with us to hear that in the video.
Norm and I have noticed a few slips with his memory
the past few days. That scares me a little since
he's been doing so well. It very well could just
be forgetfulness. I pray that it is.
Please keep praying for Alex.
FRIDAY, NOVEMBER 11, 2005
Norm and Alex were at the ranch most of the day.
Norm cleaning, Alex relaxing. They did a little
hunting but Alex said he didn't get anything. I spoke
with him earlier in the afternoon and he was
sitting outside enjoying
the sunshine (it was 73 degrees there - wow!)
Him and Norm were going to be
heading home later in the afternoon so we decided to
go to a movie tonight. I was getting a massage when they got back to Brandon
and since I wasn't
home Alex decided to go out with some friends.
That's great, but I got
stood up!
It's ok cause Megan, Brianna (no school today) and I
enjoyed a leisurely day
in Sioux Falls. We took in the craft show at the
Pavilion, lunch at
Minerva's and shopping downtown so getting stood up
wasn't so bad, I was
happy to spend a quiet evening at home.
Many of you have noticed that I haven't mentioned
Kayla in my journaling. Alex and Kayla are no longer a couple. This has
been hard for them. I
really don't know what to say. My wish is for
both of them to remember the
blessings, good times, laughter, tears, and happiness
of the time they spent
together and to truly grow from the experience.
This has been quite a
journey for all of us. Good and bad. It's
called life. There is a reason
for everything.
I know God is listening. Please keep praying for
Alex!
THURSDAY, NOVEMBER 10, 2005
Norm and Alex are still at the ranch. I spoke
with Alex this evening and
except for a headache this morning he had a good day.
(He's been having
headaches the past few mornings so we called the
doctor today, Dr. Asfora's
nurse thought it might be some withdrawal from the
Decadron (steroids) and
if Tylenol doesn't take care of it we are to go in.
Alex said that it
didn't last too long this morning and he was fine most
of the day.)
They filmed the show today. Alex said he shot a
few birds so he was happy.
Later they went fishing (on the Missouri) and he
caught a few fish. When I
talked to him he was sitting around a bon fire and I
could hear a lot of
talking and laughter. He said he was having a
good time so that's all that
matters.
Bri had a dance practice this morning before school
and another dance
practice tonight (different teams). I managed to
be on the phone all day
and spend some time with my friend, Penny. I
miss having Alex here.
I know with all my heart and soul he will beat this.
The thoughts and
prayers from each and every one of you has made a
difference. Please keep
those prayers coming.
BELIEVE!! MIRACLES HAPPEN!! GOD HEALS!!
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WEDNESDAY, NOVEMBER 9, 2005
Norm and Alex went back to the ranch today. It
was a tough day for me, not
sure why I guess I just missed having Alex around.
I talked with him this
evening and he said he had a good day. Did a
little work around the house
and some pheasant hunting (he didn't get anything).
Tomorrow they will
shoot (film) the Ultimate Outdoors show. I think
this one is nationally
televised so as soon as I hear when and where you can
watch I'll let
everyone know (in case your interested.)
Alex says he's noticing the decrease in his steroid
dosage. He's a little
more tired than he was before. Although he still
isn't sleeping very well.
Brianna wasn't feeling good tonight so I'm glad Alex
isn't home (he was
too!) He doesn't need to get sick. She
said it was just her stomach and
went to bed early. I hope she's better in the
morning.
I picked up one of those short inspirational books
with a DVD (music video)
in the back of it today. It was Michael W. Smith's,
"Healing Rain." It's
very good if you ever get a chance to hear the song.
Please keep praying!
TUESDAY, NOVEMBER 8, 2005
After a pretty quiet morning, Alex and I headed to
Sioux Falls so he could
get a flu shot. He was so thrilled. (Not!) We
then went out to lunch and to
the mall so Alex could get a haircut. He just
needed a trim and neck shave.
He's lost most of his hair in a sort of semi circle
around his head (it's
gone where the radiation hit - he didn't lose any from
the chemo.) When he
wears a hat there is still hair sticking out the
bottom so you would never
even know. I wanted him to shave his whole head
but he refused, he's still
pretty protective of the hair he still has.
We walked around the mall for a little exercise (we
only bought a cookie and
that was for me - so much for my exercise!) then back
home for a low key
afternoon and evening.
He's doing so well that at times I forget he's sick.
I take that as a good
sign that maybe he's not sick anymore!! I truly
believe he will be ok. He's a fighter and he has the tremendous support of
everyone out there who
is praying for him. He sends his thanks and well
wishes to each and
everyone of you!!
God Bless and keep those
prayers coming!
MONDAY, NOVEMBER 7, 2005
Grandpa and Grandma Schmidt came out for a visit
today. Later in the
afternoon Megan stopped in to say hello. Alex,
Megan, Bri and I went into
Sioux Falls for a party Suzie was having at Chevy's.
After one margarita,
(he begged, I caved) Alex and Megan went to watch the
"boys" bowl while
Brianna and I stayed and spent money. We then
stopped by the bowling alley
to see if Alex needed a ride home but he wanted to
stay for a while. The
smile on his face told me he was enjoying himself so
I'm glad he decided to
stay. He's been a little irritable lately but
he's been feeling pretty good
since being off the chemo and radiation. He
still complains his knees are
stiff and today he told me his teeth are really
sensitive. I'm assuming
that's from the radiation.
One more week on the steroids! Today the dosage gets
cut in half again! Yeah!! He worries about his weight but that's
the least of my concerns. I
always tell him that's something we can
"fix" and let's just take one thing
at a time! He's usually good natured when I ask if I
can rub his "Buddha
belly" and make a wish! (No wonder he's tired of
me!)
Just a reminder that he goes in for his post treatment
MRI on November 22nd. We will send the results to Duke prior to his
consultation appointments on
November 29th and 30th. Please continue to pray
for good news. The waiting
is hard.
I just want to thank all of you for being so
supportive during this time.
Your prayers are working. God is listening.
Miracles happen!!
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SUNDAY, NOVEMBER 6, 2005
Alex, Brianna and I went to church today, (Norm's at
the ranch) then to
Applebee's for lunch and some shopping at the mall.
Alex and I hadn't been
there all week!!! We were in withdrawal!
After shopping we came home, Alex
and Bri stayed home while I headed to Ralynn's for a
candle party. They
fended quite well for themselves from the looks of the
house when I got
home!! No fighting either or I'm sure Bri would
have let me know. (No
matter what's going on they are still siblings and
continue to act like it.)
Alex is watching the Eagles game right now. It
was tied when I came down to
journal so he's still in a good mood!! He was a
little cranky over the
weekend but seems better now. I can only imagine
how he feels some days.
His strength (both physically and mentally) continues
to amaze me. Keep
Alex in your prayers always. I know good things are
coming his way!
God Bless!!! Remember to pray and believe.
Miracles happen every day!
SATURDAY, NOVEMBER
5, 2005
Brianna had her first cheer and dance competition in
Brookings today. Alex
wasn't feeling up to going, he was a little tired from
going out last night
(with Dusty and Ryan, Megan had to work) so we left
him home - alone. I
don't worry about leaving him alone anymore, his
memory is good enough now
to do so. I know he feels better about that too.
Tara and Peter picked him
up and took him out to lunch, then out for a little
car shopping (one of
Alex's favorite things to do) and over to their house
for the afternoon and
evening. Norm had some errands to run in Sioux
Falls after we returned from
Brookings so he picked Alex up. They rented a movie
and are currently
upstairs watching it. Bri and I have been up
since 4:15 a.m. so we're going
to bed shortly!
(I want to add some kudos' for Bri's club cheer and
dance teams for an
awesome job today in their first competition of the
season. She dances &
cheers for Champion Cheer and Dance Academy (CCDA)in
Sioux Falls) It was a
state competition and her dance team brought home two
first place trophies
(pom & jazz) and the grand championship trophy for
dance (in the high school
division) and her cheer team brought home one first
place trophy and also
the grand championship trophy (high school division).
Congratulations to
the girls and coaches of CCDA Galaxy and CCDA Junior
All Stars!! You did a
great job today girls!!!)
Please keep praying for Alex's healing. I know
he will overcome this with
God's help. Remember, ".....all things are
possible with God." Mark 10:27
FRIDAY, NOVEMBER 4, 2005
Last nights fishing trip was a big success for Alex.
He caught his limit,
the other 8 guys along caught one fish between all of
them! Ya gotta love
it! He was pretty happy.
After getting back today, Norm and Alex had lunch with
Roy. Then home for a
little relaxation. Pam and Glenn were in town so
we all went to the Steak
House for dinner. Pam and I drove into Sioux
Falls for a little shopping
and dropped Alex off with Megan and Dusty. They
were all going out to The
Comedy Club. His friends have been trying to get
him out more but he's
usually too tired. I was glad he decided to join
them tonight. His memory
is really quite good now. I don't worry about
him like I used to. Plus,
he's with his friends, I know they'll take good care
of him so I don't have
to worry.
Please continue to pray for Alex. He's been so
strong and courageous
through all of this, he deserves a miracle!
Believe, hope, faith!!!
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THURSDAY, NOVEMBER 3, 2005
Not much to report today. Alex and Norm are
still at the ranch. I spoke
with Norm late this afternoon and he told me Alex had
a good day. He did a
little pheasant hunting but mostly hung out at the
house and "helped" his
cousin, Lance, work on putting the finishing touches
to the remodeling
Norm's been doing to the lodge. I wasn't sure how he
would do hunting. He
doesn't walk very fast and gets tired very easily. But
Alex wants to get
practiced up for the filming of the show next week.
They were suppose to come home tonight but decided
instead to take in a
little more fishing on the Missouri river. Bri
had her 6:15 a.m. high
school dance practice this morning and has it again
tomorrow morning so I'm
not staying up to see how the fishing was tonight.
Although I miss not having him here, I'm glad he's out
doing things he
loves. I'm anxious for him to get back home and
curious to see if I can
tell if he's thinking a little more clearly now that
radiation is over. I
continue to think positive thoughts. Alex has a
great attitude and a
determined spirit. He'll be cancer free.
Keep Alex in your prayers always!!
WEDNESDAY, NOVEMBER 2, 2005
Today I got up early and went into Sioux Falls to
workout. As I was leaving
I gave Alex a peck goodbye, he looked up at me and
asked where his pills
(chemo) were - I very happily informed him he didn't
have to take them
anymore!
He went to the ranch (Gann Valley Ranch) with Norm
today. I was worried
Alex might "over do" but Norm assured me he
wouldn't let that happen. (I'm
not overprotective or anything!) Before leaving
town they stopped by the
doctor's office for Alex's weekly lab work.
It was really strange not having him around today.
I took advantage of my
alone time to clean the house. Later in the
afternoon I got a massage (my
new Wednesday tradition) then Bri and I spent the
evening together for some
much needed mom and daughter time.
I called the guys to see how the day went and Alex was
cooking supper. They
spent the day on the river (Missouri) fishing (they
were filming a local
hunting show - called Wild Dakota. I'll be sure
to let everyone know when
it airs). Alex said he had a very relaxing day
(actually) and was happy
that he caught his limit of walleyes. Next week
a national televised
hunting show (Ultimate Outdoors) is filming pheasant
hunting out at the
ranch. Alex plans on going out for that too.
Last year Wild Dakota filmed
a pheasant hunt on the ranch. Norm & Alex,
our local celebrities! They'll
be back home tomorrow.
Right now the waiting is the hard part. I feel
so confident we are going to
get good news. The doctors weren't sure Alex's
short term memory would ever
come back and although not 100% it's pretty close.
(You know, it could be it
is 100% and he's just messing with us! Yes, Alex
would do that. For days,
maybe weeks, too, before he'd let on - I might have to
check on that!) The
fact that his memory is so much better just makes me
certain the tumor has
shrank. Please keep praying for that.
Prayer is powerful. God is Great!
BELIEVE, HOPE, MIRACLES!!!!
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TUESDAY, NOVEMBER 1, 2005
Today was his last day of chemo (pills)!!! It
seemed a little strange not going into Sioux Falls for
radiation. We didn't do much today. I ran
Alex to the bank in the morning and Rev Kev stopped
by. I (still) went out for lunch (Alex had take
out from the Steak House) with my friend, Ralynn.
Alex stayed home and played video games. Him and
I went for a walk in the afternoon and later in the
evening the two of us went to the grocery store
(yes, for groceries - to cook meals - at home!)
He's been feeling really good. I'm so happy
about that! Dr. McGraw (his radiation
oncologist) told us yesterday that once he's off
the steroids it might take a few months for the
swelling in his face to go down all the way but that
we should start noticing a difference soon. Alex
isn't totally off of them yet, but he has cut down on
the dosage considerably.
I want to take a moment to recognize my good friend,
Michele, who created and updates Alex's website for me
every day! Today is her birthday - HAPPY
BIRTHDAY MICHELE!!!!!. She is so awesome
and I love her a lot! I know she is busy with
her work but she still finds time to help us out.
Didn't she do a great job with the website!?! Thanks
Michele!
Life is by no means "normal" at our
house, but some of our old routines are returning.
I look back at the past few months and they seem
totally surreal to me. I have grown spiritually,
made new friends, became reacquainted with old ones,
and realized there are a lot of good people all across
this country. People who are willing to help
someone they don't even know. I hope that all of
us can take something we've learned from
this and help someone in need someday too.
Everything happens for a reason. It's all in
Divine order!
Keep praying and believing. God is listening.
(p.s. - just in case you didn't catch it, I added
more to Monday's journal entry.)
MONDAY, OCTOBER 31, 2005
Happy Halloween everyone! We had a wonderful
weekend in Denver. Alex
really enjoyed it. It was filled with relaxation,
GREAT food, lots of
laughter, friendship and healing! I hadn't seen
my cousin Dene' in 24
years. It was so good to see her. Her aunt and uncle,
Kim and Larry,
welcomed us into their home and filled our hearts and
stomachs. Kim is an
incredible cook. I thank them so much for their
gracious hospitality.
Friday evening we got together with more cousins that
I hadn't seen for a
long time. DeDe, Candi, and Lynn stopped by to say
hello and do some
catching up. It meant so much to me to see
everyone.
We took a walk around the lake behind Kim and Larry's
home, did a bit of
shopping (I know, imagine that!), but mostly just
relaxed and laughed. Alex
got some much needed rest. Our plans to take in
the football game didn't
turn out but that was for the best. It started
raining halfway through the
game and it was cold (it wouldn't have been good for
Alex). Besides, the
Bronco's beat the Eagles pretty bad. Alex was a
gracious loser and Dene'
didn't rub it in too much. My aunt Karen (Dene's mom),
stopped by Sunday
afternoon. She lives in the mountains and will
be going back to Oregon with
Dene' for the winter. I pray for their safe
journey to Oregon.
Today is a big day. It's the LAST day of
radiation. Tomorrow will be his
last day of chemo. Wow, he did awesome. We are
meeting Norm at radiation
and then going out for a celebration lunch. I've
gotten quite used to our
daily routine, it's going to seem kind of strange (but
good) not having to
go to Sioux Falls everyday. I'm sure we will
find other ways to fill the
day. Norm asked Alex if he'd like to start
helping him at the office this
week so that will be good to get him out of the house
and doing something.
Alex felt good all weekend. He cuts his steroid dose
in half again starting
today (that will make next week his last week on them
- woohoo!). He's
really happy about that. His face has swollen
pretty bad. Now it will
start going down which will make him feel even better.
His follow up MRI is scheduled for November 22nd.
We'll know then what
affect the chemo and radiation has had on the tumor.
I'm very hopeful we
won't need to do follow up treatment in North
Carolina. Please keep praying
for that.
I know that God is listening to all our prays. I
couldn't have made it
through these past few months without the tremendous
support I have received
from all of you. Just knowing Alex has so many
people praying for him is a
huge comfort. He is an awesome guy (I may be a
bit prejudice) and he has
great things ahead of him. This has changed all
our lives.
I just want to say thanks to my cousin Dene' for
inviting us to Denver.
Thank you for your words of encouragement, wisdom, and
support. I love you!
Alex has made it over some tremendous hurdles.
Two brain surgeries, chemo,
radiation and the loss of an important relationship.
His spirits and
attitude are inspiring. I'm so very proud of
him. I love you so much
Alex!!!!! Stay strong, you WILL beat this!!
This being Alex's last day of
radiation we had a celebration lunch. After his good
byes at the Cancer Center, Megan, Dusty, Adam and Ryan
joined Alex, Norm and myself at Minerva's.
The day must have been somewhat tiring for Alex. He
was going to go watch "the boys" bowl in
Sioux Falls but decided to stay home and watch
football instead. He and Norm watched football,
handed out candy to trick or treaters, ate spaghetti
and ice cream and just "chilled."
He's made it over some big hurdles with flying colors
- it makes me very optimistic about the future!!
Keep those prayers coming, I know when the post
treatment MRI is done - nothing will be there!!!!!
God is a healer!!
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THURSDAY, OCTOBER 27, 2005
We have quite a routine going, radiation, then lunch
and errands (usually
shopping). It's going to be an adjustment when
he's finished with radiation
and we no longer have to run into Sioux Falls
everyday.
Alex felt good today, he was a little tired again.
Adam stopped over after
work for a visit.
I did hear him mention to several people today that he
only had a few
radiation and chemo treatments left. He's pretty
happy about that, can't
blame him. One of the volunteers at the cancer center
made sure she told him
good bye today as she won't be there tomorrow or next
week. We've met some
wonderful people through all of this. An awesome
young man named Derek
(from Kentucky) e-mailed Alex some time ago. I
started corresponding with
him at the time because Alex's short term memory was
quite bad. Derek
shared that he, too, has been fighting with a brain
tumor for several years.
Derek has had 3 craniotomy's over the years and just
recently completed
radiation and chemo at Mayo Clinic with excellent
results. The experience's
Derek has shared with me give me hope and
understanding of what the future
may hold. Today in the mail Alex received a
prayer cloth from Derek that he
used and has passed on to Alex. When Alex is
well, he too can pass it on to
someone in need. Thank you Derek!!
Speaking of wonderful people, because of Alex's tumor
I have been reunited
with my cousin Dene'. Dene' has been a huge
support for me through all of
this. I can't even begin to tell you what she
has meant to me. She's my
encourager and cheerleader. Dene' lives in
Oregon but grew up in Denver.
She is in Denver this week and Alex & I are going
to fly out tomorrow
(Friday) for the weekend to see her, my aunt Karen,
her aunt Kim, and some
other long lost cousins. I'm really looking
forward to it, as is Alex. It
will be good for both of us to "just get
away" for a while. I just realized
yesterday that the Bronco's were playing the Eagles
this Sunday in Denver.
With Alex being an Eagles fan and Dene' a Bronco's
fan, I thought it only
appropriate that we go to the game. I would of
course sit between the two
of them (I am brave) and soften the blows (and tough!)
However, I'm not
sure it will happen (a little tough finding tickets on
such short notice and
we would have to miss part of the game to catch our
plane!) but who knows. I
will not be journaling again until Sunday. Tune
in then to find out all the
details of our exciting weekend.
Thanks again to each and everyone of you who
continually pray for Alex. I know God is listening as he continues to send small
miracles our way
everyday. God is the Great Physician. I
believe in miracles. Keep praying!
WEDNESDAY, OCTOBER 26, 2005
For neither one of us having jobs, Alex and I manage
to keep pretty busy
during the day. After radiation, we went out to
Roy and Suzie's with my
friend Penny to get some things that we are storing
out there. Suzie, Penny
and I unpacked boxes while Alex napped in the truck.
Worked for him!! (I
love having him as my sidekick. I'm sure he's probably
sick of me but I
cherish every minute I spend with him.)
After that we headed home so I could go for a massage
(yes, it was
wonderful!) Later, Norm, Alex, Brianna and I
went into Sioux Falls car/suv
shopping (sorry, Dusty and Ryan - wrong dealership)
then out to dinner at
HuHot's and dessert at Cold Stone Creamery. (I swear
it wasn't my idea, I
was actually going to cook for a change!)
He felt pretty good today. He seemed a little tired
but that's probably ok,
he needs the rest.
I just want to take a moment to acknowledge all of
Alex's friends. I can't
express how much I appreciate them and how great they
are! He whole heartedly agrees! I know they will always be
there for him!! Thanks, hugs,
and love to each and every one of you!!
Hey, by the way - Happy Birthday, Ryan!
Pray continually!!
TUESDAY, OCTOBER 25, 2005
Not much happening today. Alex helped me do a
little cleaning this morning
before radiation. After lunch we ran a few
errands. He's been helping me
car/suv shop. He loves cars so this type of
shopping he enjoys a lot. We
test drove a couple different vehicles but I'm still
undecided.
He spent a quiet evening at home. He just
continues to amaze me. I thought
he might be tired today since cutting back on the
steroids, but he seemed to
feel good all day. Even though he's feeling
pretty good physically, he's
been a little edgy lately. Lot's of other things
happening in his life too.
I keep wishing I could fix everything for him, but I'm
learning to turn
those things of which I have no control over to God.
It really works, wish
I had started doing that years ago!
Once again, I just ask that you keep Alex in your
prayers. God heals.
God Bless
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MONDAY, OCTOBER 24, 2005
The countdown has begun! Next Monday is Alex's
last scheduled day of
radiation. Chemo will be done (for now) around
that time also. He was kind
of "down" today. Just really tired of
all of this. I can only imagine how
he feels (he could use some cheering up.) (Megan
stopped over in the
evening, I was gone at the time, but I noticed he was
much happier when I
got home - thanks Megan!!). Some good news, Dr.
McGraw cut down his
Decadron (steroids) starting today instead of the end
of the week and want
to cut it down every week instead of every two weeks.
That means he will be
weaned off of them sooner. That should help the
swelling in his face and
his sleepless nights.
It was an early morning here. I took Brianna to
dance practice at 6:00 a.m.
Alex was awake when I got back so he had his chemo
early and I went and
worked out so he was on his own for breakfast. His
memory is well enough now
that I can leave him notes and he does just fine.
Then it was radiation and
lunch as usual.
Some awesome ladies from our church have been bringing
us dinner every
Monday night. They are so sweet and I can't
thank them enough. Thank you
Becky and Diane!!!! Our entire church family has
been so wonderful and
supportive through all of this. Especially my
pastor and friend, Kevin (aka
"Rev Kev"), he see's Alex several times a
week and he's always there for me
when I need him. Thanks just doesn't seem like
enough to say. He is
another miracle sent from God. Thanks Kevin!
We should never measure our wealth by money but by our
friends. Alex and I
both turned out to be pretty rich!
Remember to keep praying and BELIEVE in MIRACLES!
SUNDAY, OCTOBER 23, 2005
The day started out with church and then home
for the usual afternoon of football. Alex was happy, the Eagles won!! (And
how 'bout those Vikings, huh Norm?) (Norm and I have a mixed marriage - he's
a Packer's fan and I'm a Vikings fan.) (If you aren't a football fan, the
Vikings played the Packers today - the Vikings came from behind to win in the
last 2 seconds of the game!!)
After football, Alex and I ran Bri to
dance and cheer practice, met Pam, Glenn and Larry for a soda, then went to
Hy-Vee, home and back to Sioux Falls to pick Bri up. Alex wasn't feeling
very well, just kind of "blah" and tired but he was glad to get out of the
house for a while.
Alex is pretty happy about having only one week left
of radiation and chemo (actually it's one week and one day.) It's my
understanding that the chemo and radiation will continue to work even after
he's completed it. That's why Duke wanted us to wait until the third week in
November to do the next MRI. That way they can see what affect it's had on
the tumor. I continue to remain hopeful. I know we can do further treatment
at Duke, but I believe in miracles and I believe Alex will be cancer free.
The waiting is hard but......"Be patient when trouble comes, and pray at all
times." Romans 12:12
Please remember to pray for Alex.
SATURDAY, OCTOBER 22, 2005
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Peyton and Dalton came for a visit today. We
took them to the County Fair
in Brandon (it has kiddie rides, arcade, games with
tickets and prizes kind
of place) and then back to the house.
Alex went
with his dad, Tim, for a
few hours and later he went out to dinner with Megan,
Dusty, Adam, Tab, and
Adam's little brother, Dusty.
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He didn't sleep very well last night so he was a
little tired today. He
also seemed a little "down" today. He
doesn't talk much about how he feels.
He does his best to stay positive but I know it's hard
for him at times.
Everyone has been so supportive, I can't tell you how
much it means to me.
He loves company so don't hesitate to call or stop by.
Believe and pray. God is Great!!
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FRIDAY, OCTOBER 21, 2005
Alex is done with his 5th week of chemo and radiation
- one week to go!!!
After Norm and Alex took Nicole to the airport, (I had
yet another
appointment) we met Roy, Suzie and Megan for lunch at
Red Lobster. After
lunch, I took Alex to radiation. Him and I then
spent the afternoon running
errands and shopping (it was mostly to get him out
moving around but I
managed to get a few new items at the mall!)
Alex snagged a couple pair of
new jeans and a new cell phone. With Norm off to
the ranch and Brianna
babysitting, Alex and I decided to go to a movie.
However, I totally wore
him out in the afternoon so we settled in for a rental
at home.
Alex felt really good again today. Just the
usual complaints of stiff,
sore, achy knees. I figure in the whole scheme
of things, that's pretty
minor. I'm so thankful for his strength!
I pray every day for a miracle. As my friend
Tammy pointed out to me today,
miracles are already happening. She wrote this
to me in an e-mail - "I have
a good feeling about a miracle and it is already
taking place with Alex. It
sounds like he has not been ill from his treatments,
there's a miracle. It
sounds like he is in good spirits, there is a miracle.
It sounds like his
memory is improving, there's another miracle!!
You see...the miracles are
happening every day and I am very optimistic there
will be more to come for
you and for Alex." Thanks Tammy - I miss
you!!!
I have really learned to appreciate the time we spend
together as a family.
However, I did enjoy having Alex all to myself tonight
even if we did have
to watch Hitchhikers Guide to the Galaxy (not on my
recommended viewing
list - although it did get a few laughs!)
Keep those prayers coming - miracles are happening!!!
THURSDAY, OCTOBER 20, 2005
Nicole took Alex to radiation and lab today. Dr. Keppen's office called
later in the day to let us know that his blood work looked good. With each
passing week, I keep expecting Alex to be more fatigued and possibly even
sick from the chemo and radiation but every day he continues to surprise and
amaze me. Not only has he stayed strong physically through all of this but
he's been so incredibly courageous too. He kind of just "goes with the
flow" of things. His memory, although not 100 percent yet, is improving
every day. We no longer have to watch the same TV shows over and over. (I
never knew FX played the same episode of a program back to back - I know
now!) He's been really good natured about the "memory" jokes - like he'll
be able to do his own Easter egg hunt. He does, however, hate how he looks
from the steroids. He says he looks like a "cheese ball!" Whatever!!!
Alex didn't do much today. Rev Kev stopped by for a visit in the afternoon.
Alex and Nicole grilled steaks for supper and watched a movie while I took
Brianna to dance practice. Nicole goes back to California tomorrow. I'm
going to be lost without her. She has been my right hand, my support and my
best friend this past month. There's going to be a big empty spot when she
leaves. I'm going to miss her hugs, her laughter, her helping hands and her
smile. Thank you Nicole, I love you.
I believe with all my heart and soul Alex will overcome this. All of your
prayers are helping so much. Please keep them coming.
WEDNESDAY, OCTOBER 19, 2005
Today I had an appointment so Norm and Nicole went to
radiation with Alex.
Then they went to lunch at Minerva's without me! (For
those of you who don't
know, Minerva's is one of the best restaurants in
Sioux Falls - at least in
my opinion.) Not only that, I let Alex and
Nicole take my car and they got
a parking ticket - which I paid!!! For me, it
wasn't a great day but the
rest of the family did ok!!!
Alex felt really good today. Nicole suggested he get
some exercise, maybe a
walk or something in the afternoon. When that
didn't work, Norm made him go
to Sam's Club with him to get supplies for the ranch
(Norm owns a pheasant
hunting operation we call "the ranch" aka
Gann Valley Ranch.) So he got a
little exercise after all.
I'm really struggling getting him to do anything but
watch TV. I think that
reading, getting out, playing video games, anything
that would be more
stimulating would be better for his memory. If anyone
has any suggestions,
I'm open for them!
Keep those prayers coming, it's obvious to me they are
working!
BELIEVE - Miracles happen every day!
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TUESDAY, OCTOBER 18, 2005
I really have to stop journaling so late at night.
I just went to read last
night's entry and I didn't proof it very well. Hopefully you all figured out
what I was trying to say.
Alex had a doctor's appointment this morning with the
plastic surgeon who
treated him for his burns. It was just a follow up and
everything looks
good. After the appointment, Alex, Nicole, Norm and I
went to lunch at
Qdoba's and then off to radiation (we mixed things up
today!! WooHoo!)
We are in the process of filling out all the paperwork
for Duke. There's
quite a bit. Because of scheduling problems,
Alex's MRI appointment that
Duke wanted done on the 18th of November will be done
on the 22nd of
November instead. He will also meet with Dr.
Asfora (his neurosurgeon) that
day.
The rest of today was pretty uneventful. Trust
me, I like uneventful. When
I speak with friends and family and I ask them how
things are going and they
tell me "same oh, same oh" I now tell them
to appreciate the "same oh, same
oh." I long for that again.
Thanks to all of you who read this website and keep
Alex in your prayers. It
means so much to Alex (and all of us.) Everyday I try
to count my blessings.
I have so many things to be thankful for. One thing
I'm really thankful for is that I do not have to work outside the home and
that I can take Alex to
his appointments. However, rarely do we go alone.
I happen to overhear one
of the volunteers at radiation say the other day,
"here comes Alex with his
entourage!" I loved it!!
God Bless and keep praying!! Thanks!!!
MONDAY, OCTOBER 17, 2005
Today was kind of quiet. Nicole and Norm went to
radiation with Alex (I was
having lunch with my good friend, Wendy - we went to
lunch for her birthday. Her birthday was the beginning of July - better late
than never!). After
radiation was lunch at Spezia's, then home.
Later in the afternoon, Kayla and her friend, Nicole
stopped by as well as
Megan and Grandpa and Grandma Schmidt.
Some wonderful people from our
church have been providing us with dinner every Monday
night. I can't thank
them enough for their caring and generosity.
The rest of the evening was spent watching more
football.
I can't believe we are already into the 5th week of
chemo and radiation. I'm
so glad the time has gone fast for Alex and that he
hasn't been getting
sick. He still complains daily of "stiff"
knees but that's pretty not much
else. I continue to be optimistic that we may not even
need to continue
treatment in North Carolina. Alex's memory isn't
100 percent, but it is
sooooo much better. When people ask me what they
can do for us, my standard
answer is just pray. I believe in the power of
prayer - look what it's done so far!!!!
Keep 'em comin!
SUNDAY, OCTOBER 16, 2005
After church, Alex, Brianna, Nicole and myself went
out to lunch then home
for a "somewhat quiet" afternoon of
football. T-Roy called to see if Alex
wanted to go out and watch some football, but I think
the excitement of the
weekend wore him out. I heard him tell T-Roy he
was tired and just needed
to rest. I'm really glad he is more comfortable in
telling people how he's
feeling and when he just needs some "down"
time.
Not much else happening today. Other than being tired,
Alex felt pretty
good.
The support of Alex's friends has been awesome through
all of this. I don't
know if they realize how much their presence means to
him (and me!) and how
very much they are helping in the healing process.
When Alex is well, we
are going to CELEBRATE! HUGS!!!! THANKS!!
Please continue to pray.
HOPE "Hope is faith - holding out its hand
in the dark."
-George Iles
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SATURDAY, OCTOBER 15, 2005
Alex had two good friends come from a distance
to see him this weekend. In addition to T-Roy, Alex's friend Callen drove
from Rapid City to see him too.
After lunch at T-Roy's parents home,
Alex and Callen took in a little opening day pheasant hunting. I'm told the
hunt wasn't very successful but I don't think either one of them cared. The
weather was beautiful and it was nice just to "hang out." The picture was
taken "after" they returned. Although a bit tired, Alex had a great
time.
He's still doing amazingly well with his treatments. Please
continue to keep him in your prayers!!
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FRIDAY, OCTOBER 14, 2005
If you are a regular reader of Alex's website,
I'm sure you're wondering what his "surprise" was today. Alex's good friend,
Troy, flew home from Florida (where he attends school) just to see Alex for the
weekend. It was so great. Alex was really surprised when "T-Roy" walked in.
T-Roy took Alex to radiation and then we all went to Foley's for lunch. |
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Alex's
Aunt Kim joined us as well as Brianna's friend Becca. Megan stopped in for a
short time. Alex and T-Roy then did a little shopping, stopped at T-Roy's
parents home and over to Kayla's. Later they met Peter, Tara and JayMar at
Granite City for dinner and still later that whole bunch met Nicole and I at
Nutty's (where we had stationed ourselves for an impromptu girls night
out!).
It was a very busy day and I think it wore Alex out a bit, but he
had a GREAT time. Have I mentioned lately that he has AWESOME friends?!! I
thoroughly enjoyed watching him smile, all
evening!
Each day Alex's memory gets a little better. This gives me so
much hope. He's a fighter. He has that stubborn German blood in him - he will
win!!
fAith
wiLl
hEal
AleX
Keep Praying!!!!
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THURSDAY, OCTOBER 13, 2005
Not much to report today. We did the usual routine of
radiation and out to lunch, then home.
I thought Alex might be a little tired today since we
cut back on the Decadron, but he doesn't seem to be. We even left him
home alone for a few hours tonight since his memory has improved so much.
I was a little worried he would try and eat too many sweets or sneak a beer.
He said he didn't, I guess I'll take his word for it.
Alex has been complaining about his knees hurting a
lot. I'm assuming it's from the chemo. He's been getting nightly knee
rubs and foot rubs from me. I'm really NOT a foot person so I hope he
knows how
very much I love him!!
Tomorrow Alex has a "surprise" coming!!
You'll have to check the website tomorrow evening to see what it is!
Once again, I want all of you to know how very much I
appreciate all of your e-mails, messages, thoughts and prayers. It
makes my day every time I see the counter on the website and see there is a new
message or e-mail. Alex's sends his thanks and appreciation too!!
Keep praying, I know God is listening!!!
WEDNESDAY, OCTOBER 12, 2005
Alex had a busy day at the doctor's office today.
First, he had lab work done - it's still looking very good. (However, Dr.
Keppen did tell us that with Temodar things could "change" quickly.)
Then he went to radiation. After radiation, he had an appointment with Dr. Keppen
(his oncologist) and then an appointment with Dr. McGraw (radiation
doctor). Both doctors were very pleased with how he's feeling and so far how
everything is going. They lowered the amount of Decadron (steroid) he is taking
again. Alex will continue to take less every two weeks until he is
eventually off of it completely. This is good as he's a bit self
conscience of his puffy face.
Norman spoke with the doctors at Duke today.
Alex is currently scheduled for an MRI on November 8th. This would be a week
after his radiation is complete. The doctors have asked us to change
the MRI to November 18th.
Then come down to Duke on the 29th and 30th for a
consultation to discuss any further treatment that is necessary and what and
where that treatment would be. We will be leaving for Duke on the 28th of
November.
Hey, we didn't go out for lunch today!!! Tonight
we grilled out and Alex, Norm, Brianna and I went for a walk after dinner.
I've have included a picture of Alex and Nicole.
Megan and Amy took the
picture Monday night at the bowling alley. This
is a big deal because
Nicole HATES to have her picture taken.
I've tried
numerous times in the
past few weeks.
It has been so nice having her home. I
can't begin to tell
you how much help, comfort and support she has been to
all of us. I'm not
sure I could have gotten through this far without her.
I love you,
Nicole!!! |

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God Bless all of you who have continued to keep Alex
in your prayers. I have high hopes that we won't even have to continue
treatment in North Carolina. Please keep praying and a big HUG and
THANK YOU to all of you!!
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TUESDAY, OCTOBER 11, 2005
Alex was a little tired and complaining of his
knees aching some today. We had the usual day of radiation, lunch and today
a little bit of shopping.
We have all noticed Alex's memory improving.
Each day it seems a little better. I can't tell you how hopeful this makes
me.
Alex's Grandpa and Grandma Schmidt have been in town for a few
days. Grandpa Schmidt (my father) had a cancerous lesion removed from his
ear today. He's doing great and no further treatment is needed at this
time. This evening we (Grandpa, Grandma, Norm, Nicole, Alex, Brianna and
myself) all went out for dinner and back home to watch baseball. The girls
and I tried to get Alex to go out for a walk with us but he wasn't feeling
very well. We went without him, it was a perfect fall
evening.
Remember to pray. In God We Trust - as every penny says!!
(Right, Vicky?!)
MONDAY, OCTOBER 10, 2005
Alex was a little tired today. I notice that
Monday's radiation seems to wear him out more than the other days of the week. He
did go league bowling tonight with Dusty, Ryan, Adam and Troy. He was
disappointed he wasn't doing very well, his arm hurt him a lot. Not
sure if it was still stiff from the 5 games he bowled on Friday night or if the
chemo is giving him body aches. I know the chemo and radiation could
really start to catch up with him at this stage of the game. We are into
the fourth week of it now.
I had to remind him today that he couldn't drive.
This upset him a lot. We had talked about it in the past but he had forgotten.
Alex had a seizure in the hospital after his first surgery. Because of
this he cannot drive legally for one year unless the neurologist writes a
letter to the DMV and (I think) he has to be on anti-seizure medicine.
He hasn't had any other seizures so he's not currently taking any meds for it.
Alex has a love for automobiles so this is really hard for him.
As for me, I've learned to take one day at a time.
Things/issues that at some other point in my life would have been huge are
trivial to me now. I've learned to appreciate FRIENDS, FAMILY and TIME
spent together as opposed to material things and stressing over the
"small stuff." This has changed my life forever. You see, I'm dealing
with some other big challenges in my life right now in addition to Alex's
cancer. I've learned to stop and BREATHE, to talk with God as a friend and
learning not be afraid to say how I really feel. I see the
"good" from everything happening around me.
Dene' (my cousin and friend) wow's me with her
wisdom and every day I feel stronger. Thanks Dene'. I believe with all
my heart and soul that Alex will be ok. (To my family - we can work this out.)
Remember to pray. PRAYER + BELIEVING + HOPE +
FAITH = MIRACLES! God is GREAT!
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SUNDAY, OCTOBER 9, 2005
Today we went to church and then home to watch
football. Alex's dad, Tim, picked him up for a few hours of running errands
and walking around the mall. Unfortunately, the Eagles lost today, which
made for a bad mood on Alex's part later.
He's still feeling good.
Once again, after a few days off of radiation his short term memory does seem
improve. This continues to give me hope. Sunday's are still his best
days.
However, I did speak too soon. Alex's hair started falling out
today. He has several bald spots on the left side of his head. He's not
very happy, but we tried to put it all in perspective and he agreed that it
was better to lose his hair then be sick every day from the radiation and
chemo. Nicole offered to get him a "rug" but he didn't find a lot of humor in
that at the moment.
God Bless and remember to pray for Alex!!
SATURDAY, OCTOBER 8, 2005
Alex was a little stiff and sore this morning. I just
laughed because he
wasn't sure why. I then reminded him of bowling the
night before. "Oh, yeah." We do need to work on him being more
physically active. He hates
getting on the treadmill and the weather is getting
colder so going outside
for walks may not be as much of an option. We
can always go to the mall and
walk but I'm sure Norm would rather I thought of
another place to go!!!
Today was relatively quiet. Alex, Nicole,
Brianna and I went out to dinner
and then Alex and Nicole took in a movie. (Contrary to
popular belief, I do
cook, I'm just not very good at it. Like today,
I put a roast in the crock
pot, seasoned it, turned the crock pot on high, left
it to do it's thing,
right? Well, it certainly helps if you plug it
in!) (That's why we went out
for dinner - ya'll know what we're having for Sunday
lunch now!)
Saturday's and Sunday's are just chemo days, no
radiation.
I just wanted to take a brief moment to thank Heather,
my niece and my best
friend. She put together a box of notes and
gifts for me from my family and
friends. They were letters and gifts of
encouragement, support and love.
Dene' always tells me I'm surrounded by an army of
angels, sometimes it
takes a kick in the head for me to see they are
visible all around me. I am
truly not walking through this journey alone. I
have had the support and
love of friends and family that I can't even begin to
describe. Thanks to
each and every one of you who took the time to write
or add something to the
box. When I was sitting there reading everything
I asked Brianna to bring
me a kleenex, she brought me the whole box.
Smart move.
A special "I love you" to Heather, Kaye, Pam
and Kim (my sisters!)
He's doing great - keep those prayers coming!!
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FRIDAY, OCTOBER
7, 2005
Alex had a good day today. First, he was forced
to attend a crap (excuse me
"craft" show) with his aunts Pam and Kaye,
cousin, Heather and
cousin-in-law, Season. Then, Nicole took him to
radiation and out to lunch.
Later, Kayla made him dinner and then Adam, Tab,
Dusty, Ryan, and Megan took
him bowling. He kicked some serious butt bowling
(ok, Dusty did beat him
one game!!) and he had a GREAT time!
Nicole and I did stop by to observe some bowling.
As I sat by and watched,
I can't tell you how good it felt to see him with his
friends doing
something that he loved. I try not to think
about what could be. He is
such an AWESOME kid, I know what will be. He will be
cancer free!!!
Thanks to all of you for your prayers. Keep
praying!!
THURSDAY, OCTOBER 6, 2005
I know that Alex could still experience the side
effects of the chemo and
radiation that a lot of people do, but so far he's
doing very well. I am so thankful for that. He has not lost any hair and is
very happy with how much
has grown back since his father and I shaved his head
after his second
surgery. Today was spent at radiation, out to
eat twice within an hour and
a half, meeting with Pastor Kevin (who gave him an
awesome writing journal),
running errands with me and grilling out for dinner.
I want to take a moment to acknowledge Brianna (Alex's
little sister). As
many of you know, we sold our home and are living
temporarily in a twin home
until we build again. Our accommodations are
small to us (going from 7,000
square feet down to 1,700) for four people.
Anyway, unlike most homes, we
only have one TV in use. Until Alex's illness,
Brianna was in charge of the
remote (also unlike most homes!) She has (maybe
not so gladly) given up
control of the remote to Alex without so much as a
complaint (not yet
anyway). If you know Brianna, this is a huge
deal. Also, Brianna is in
charge of carving Alex's name in "Alex's"
soap. We have a bar of soap in
our bathroom that we use as a "visual aid" -
the bar represents Alex's tumor
and every time we wash our hands with it we visualize
the tumor shrinking. (This was a recommendation from my awesome cousin,
Dene' in Oregon, who has
helped me more than she will ever know, in the past
weeks!!)
I know all of this has been very hard for Bri.
She started her Freshman year this year at exactly the same time Alex was
diagnosed. She has managed
to keep her grades up and attend her dance and cheer
practices (which
amounts to about 10.5 hours a week of practices.)
Her abundance of energy
is contagious and even through the toughest of times
she can make her mother
smile. She is an amazing young lady. I love her with
all my heart, she is my
"Sunshine!"
Life is a journey, what a journey ours has been so
far. Believe! Pray!
Hope! All lead to Miracles!!
WEDNESDAY, OCTOBER 5, 2005
Good news. The bump on Alex's shunt incision
was just a little fluid buildup. By the time of Alex's doctor appointment
this morning, it had already gone down. Apparently there is a valve there
that can sometimes get plugged. Dr. Asfora (Alex's neurosurgeon) just pushed
it a few times and said "it seems to be working." (It was at that point both
Nicole and I cringed - as we were walking out we both asked him if that hurt,
it sure looked like it did. He just shrugged his shoulders and said "yah.")
Dr. Asfora asked about Alex's short term memory. It still isn't very good.
His appointment this morning was at 10:00 and he had eaten breakfast at 9:00
and couldn't remember what he had eaten. Dr. Asfora didn't seem too
concerned, he thought that once the tumor starts to shrink and the radiation
is over that his memory would improve. That made me feel very hopeful. We
have figured out a few ways to help Alex remember. Naturally, repetition
works the best. Things of more importance (other than what he had for
breakfast for example) seem to stick with him better.
Both Dr. Asfora
and Dr. McGraw (radiation doctor) agreed we could lower the amount of
Decadron (steroid) Alex is taking. This should help with the swelling in his
face, his appetite and also his sleep. He was on a pretty high dose of steroids
and he really wasn't sleeping much.
Other than him sneaking
sweets all the time, everything else is going well. Alex was just a bit tired
today. Grandpa and Grandma Schmidt stopped by for a visit but I think Alex
slept the whole time they were here. (That's ok!!) Later, Kayla and Molly
stopped by to say hello.
As always, keep praying. Christ is a
healer.
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TUESDAY, OCTOBER 4, 2005
Alex had a very busy day today. He had the usual
trip into Sioux Falls for radiation, lunch and today,
a movie purchase. In the afternoon "Rev Kev"
(our pastor, Kevin) stopped over for a visit.
Kayla also stopped by for a few hours. Grandpa
and Grandma Schmidt were in town and they took him out
for dinner in the evening. After dinner, Dusty
stopped by, Nicole and Dusty got him out for a walk.
And still later in the evening, Megan, Amy and Ryan
stopped by. (See, I told you he has the GREATEST
friends!)
I'm really not sure how Alex was feeling today.
He's gotten so he doesn't want to tell me when he's
not feeling well. Nicole did notice a bump on
his shunt incision. It seemed to get larger as
the day went on. I called Dr. Asfora and we have an
appointment to have it checked out tomorrow
(Wednesday). Please pray that it's nothing.
I worry it could be an infection or something wrong
with the shunt. He did seem a little more confused
this afternoon.
Please keep Alex in your prayers. Someone has
survived every kind of cancer - it can be done and
Alex is just the guy to do it!!!
MONDAY, OCTOBER 3, 2005
Uncle Roy (Norm's brother) met us at radiation today.
Having gone through
radiation and chemo himself for a cancerous tumor that
started in his sinus
cavity a year and a half ago, he wanted to take a look
at the radiation
machine. We teased him about going in for a
"booster." (Roy is cancer
free!) It's been helpful talking with Roy about what
we may expect from all
of this. Everyone reacts differently but it's nice to
have someone "who's
been there" to talk to.
After radiation, Roy, Norm, Nicole, Kayla, Alex and I
went to lunch at
Spezia's. Nicole and I continued on to Wayne and
Mary's (a nutrition store)
looking for wholesome, organic, natural foods for
Alex's diet. We got a few
ideas and came home with lot's of literature and a new
book. Later in the
evening we went through the cupboards and freezer and
got rid of a lot of
"junk."
Alex wasn't feeling too well after radiation. It kind
of kicked him in the
butt after having a few days off. Kayla came by the
house and spent some
time with him in the afternoon. He perked up in the
evening and the girls,
friend Megan, Nicole, Brianna and myself got him to go
out for a walk.

I have good days and bad days. At times, I just
can't believe all of this
is happening to my "little" boy. I
watched him as we walked tonight and he
took my hand. It reminded me of twenty years ago
when I would hold his hand
as a small boy. He has been so incredibly brave
through all of this it just
amazes me. I know at times he's brave just for
me, I wish he wouldn't be.
He needs to acknowledge everything he must be feeling
inside. I know it's
hard for him. I just want to take it all away. I
wish I could. I pray
everyday, many times a day. He will beat this,
he will.
Believe in miracles and keep praying!!
SUNDAY, OCTOBER 2, 2005
We are very fortunate that the Temodar (chemo) Alex is taking isn't making
him sick. The steroids he's on for inflammation in the brain does swell his
face and make him very hungry (as steroids will do). Since he's feeling
pretty good, we've been trying to get him a little more active. Yesterday,
as I mentioned, he played Frisbee golf and today I made him get on the
treadmill for a while. It took a bit of coaxing on my part and some choice
names for me on his part but he got on and did 7/10ths of a mile.
Afterwards he said it did feel good.
We have almost two full weeks of chemo and radiation under our belts. Alex
is not scheduled for another CAT scan or MRI until the first part of
November. So although we have no idea if the treatments are working, I'm
very optimistic that they are.
Alex spent most of the afternoon watching football. Alex is an avid Eagles
fan and they did win today. We won't talk about the team I root
for. Let's
just say, it wasn't pretty.
Alex's friends, Aaron and Jake stopped by for a
visit (see photo). Jake is
home on a four day leave. He will be leaving for Iraq next week. Aaron is
in the Army Guard. As most of you know, Alex just got out of the Air Force
in March and is in the Air Guard here in Sioux Falls. His unit has been so
great and supportive during this time. Please remember to pray for our
soldiers!!

You know you always hope your children pick good friends. As much as you'd
like to you can't pick their friends for them. I honestly have to say, Alex
has some of the GREATEST friends. They have stuck by him through all of
this and I can't tell each of them thank you enough for their support. He
needs all of you now more than ever. Thank you from the bottom of a mother's
heart!!
I, too, have the GREATEST friends and family. Thanks to each and everyone
of you for your time and prayers.
I also wanted to thank all of you for the nutritional advice. In the online
research I've done, the people who are most likely to beat this have had to
make other lifestyle changes. Nutritional changes are one of the biggest.
Alex is doing much better at staying away from the sugar (wish I could say
the same.) I'm even getting him to eat some fresh fruit when I put it in a
smoothie. He's so picky, it's really hard.
As always, please keep him in your prayers. Believe, for miracles happen
every day!
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SATURDAY, OCTOBER 1, 2005
Alex had a very good day today. The day started
out with a round of frisbee golf with Norm, Nicole and
Brianna. Then the foursome went out to lunch.
This evening Alex went to dinner with his friends
Dusty, Megan, Tab, Adam and Norm to celebrate Dusty's
birthday.
Just chemo today, no radiation.
Keep praying!!
FRIDAY, SEPTEMBER 30, 2005
Alex's Grandma Carol (Bindert) Shoberg came for a
visit today. After some brief sightseeing and
radiation, Carol, Alex, Nicole and I went to lunch at
Johnny Carino's. He seems to be feeling a bit
better these days.
Alex is very quiet. If you talk to him or visit
you will notice that he doesn't initiate conversation
or want to talk about what's going on. He's a
little edgy when pushed about things, he acts mad but
will quickly start to laugh. He still gets a little
confused (due to short term memory loss) at times and
it frustrates him some. He seems to open up to
his friends more (he's probably sick of me, Nicole and
Brianna). His sisters have been awesome making
him do things and go for walks in the evening.
This weeks lab work looks good.
I just need to vent - I am disappointed in the support
(or lack thereof) in regards to nutrition, mental
health, physical health etc. we are receiving here
(Sioux Falls). I contacted the doctor today to
see what kind of support was available. When I
asked specifically about nutrition I was asked if I'd
checked the internet. I agree, the internet is a
wealth of information but it would be nice to have
someone to work with to customize the best nutritional
diet or mental health care for Alex. Someone did
call me back with suggestions for counselors, I'll
check with some of them Monday morning. I'm seeking
advice any of you may have to give. This is all very
new and scary to me.
Remember to pray!!
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THURSDAY, SEPTEMBER 29, 2005
Grandpa and Grandma Schmidt came for a visit today and
took Alex out to
breakfast. After breakfast it was off to radiation.
Alex is still
tolerating the radiation and chemo treatments very
well.
Fortunately, Alex still has a good appetite.
However, we are trying really
hard to cut down on the sugar in his diet as sugar
feeds the tumor. This
has been very difficult as Alex likes his sugar
(wonder where he got
that?!?!) Nicole and I have been doing some
research on nutrition during
cancer treatment. Alex doesn't like fruits or
vegetables so it's a little
difficult to get him to eat a balanced diet. Plus, I'm
such the great chef
(not!). If anyone has any ideas or suggestions
for us, please feel free to let us know.
As always, keep him in your prayers!
WEDNESDAY, SEPTEMBER 28, 2005
Alex had a good day. He's feeling better and I
think his memory is
improving. After some lab work and his radiation
appointment, Nicole and I
took him out for lunch. (It has been wonderful having
Nicole here, I'm not
sure I'm going to let her go back to California!!!)
Tonight Nicole, Alex,
and Brianna went for a walk while I went out with a
friend for a few hours.
I like days with not much to report!! Keep him
in your prayers!!
TUESDAY, SEPTEMBER 27, 2005
Alex is feeling a little better today than yesterday.
He's just very tired.
Brianna and Nicole both made him go out for walks, the
weather was beautiful
today especially this evening.
Please keep praying for Alex. There is power in
prayer, healing power.
MONDAY, SEPTEMBER 26, 2005
Alex didn't have a very good day today. I
think the chemo is starting to catch up with him. Lots of body aches. His
skin around his head is very tender to the touch and starting to get
red.
Nicole got in today. After radiation, Alex did run to the mall for
a few minutes with Nicole and I. Kayla stopped by in the afternoon for a
visit and in the evening Megan B. stopped to say hello. Some wonderful
ladies from our church brought dinner over so I didn't even have to
cook!!
SUNDAY, SEPTEMBER 25, 2005
Alex, Brianna and I went to church and out to lunch
today. After a quick
stop at the mall (Brianna had an Abercrombie gift
certificate burning a hole
in her pocket - Thanks Jen and Jeff!) Alex spent the
afternoon at Kayla's.
I have noticed after a couple days reprieve from the
radiation he starts to
think more clearly. That gives me hope that once
the tumor starts to shrink
his short term memory will get better.
He's
feeling good, although still
picking on his sister too much.
Tomorrow, Nicole (his
older sister) will be
home from California for two weeks, maybe she can
rescue Brianna!
SATURDAY, SEPTEMBER 24, 2005
Alex gets Saturday's and Sunday's off from radiation, but he still does
chemo on these days.
I've had a few people ask me what symptoms led up to all of this, so I
thought I'd take advantage of a "not much to report day" and tell the story.
As many of you know, Alex was severely burned in a fire the end of July. He
was starting a burn pile on fire out at Norm's (pheasant hunting) ranch when
he accidentally used gasoline instead of diesel to get the fire going. It
blew up and Alex received second degree burns on his hands, arms, face and
neck. After 5 days in the hospital he came home to recuperate. I noticed
the swelling in Alex's face wasn't going down but really didn't think much
of it, I assumed it was a result of the fire. His burns were healing very
nicely, but Alex wasn't feeling well. He started getting severe headaches
and vomiting.
After several weeks and several trips to the doctor, we still
didn't know what was wrong. He was being tested for mono, lyme disease and
west nile virus - stuff like that. Then we started to notice the memory
problems. After a third trip to the doctor (and Alex 20 pounds lighter) a
new doctor decided to do a CAT scan. That was how the tumor was found. The
swelling in his face was actually the cerebral fluid that was not being
allowed to drain because of the tumor. At the time the tumor was found it
was larger than a golf ball but smaller then a tennis ball and located in
the very center of his brain in his thalamus. Although the doctors think the
tumor could have been there for up to ten years, it really got active within
the past few months. I asked several doctors if they thought his immune
system had gotten weak due to the fire which then allowed the tumor to take
off, but both told me they thought the fire was a result of the tumor -
meaning he got confused and disoriented thus the mistake with the gas and
diesel. (The rest of the story is in my first journal entry.)
Alex is currently taking steroids to help with any swelling in his brain,
however, they do puff his face up too. I've noticed the radiation is making
his face a little red also - kind of like a slight sunburn. But he's
feeling pretty good so far so we'll take those minor symptoms.
Keep those prayers coming his way. Prayer is a powerful thing and I truly
believe Alex is going to beat this.
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FRIDAY, SEPTEMBER 23, 2005
Not much new to report. Almost one full week of chemo and radiation under
our belt. Alex is doing great!! The steroids make him a little irritable
(right Kayla and Brianna??!!) but we're all happily dealing with it. He's
doing so well in fact that Kayla, her mother (Christine) and I took him out
to lunch and then to the mall today. Maybe it wasn't the steroids making
him irritable?!?!? Poor guy lunch and shopping with 3 women - what a
trooper!!!
I just wanted to say thank you for all the great messages, cards and
e-mails. Sorry if I don't respond to all, but I just wanted everyone to
know how much I appreciate them!
THURSDAY, SEPTEMBER 22, 2005
We're into day 3 of radiation and day 2 of chemo. Alex is doing great.
He hasn't been getting sick and he still has a healthy appetite.
Alex wanted to thank everyone for all the support and prayers and to let you
know he's available for lunch anytime!!!!
WEDNESDAY, SEPTEMBER 21, 2005
Alex started chemo today. So far so good. He's feeling pretty good. He
will do chemo everyday for the next six weeks with radiation being Monday
through Friday for that time.
TUESDAY, SEPTEMBER 20, 2005
Alex had his first radiation treatment today, he will go every weekday for
the next six weeks. It doesn't take very long, about a half hour. Chemo
will start tomorrow in the form of a pill he will take for the next 42 days.
He feels good today.
A NOTE FROM KELLY:
Twenty two years ago a young man came into my life. He was an inpatient
little thing, weighing in at all of 5 pounds 3 ounces he arrived 6 weeks
prematurely. The day we brought him home from the hospital, I was told how
he almost died. Never once did that thought ever cross my mind. I guess I
knew it could happen, but it just wasn't going to.
Today, I know my son has
cancer, I don't like to say it so I don't. I also know with all my heart
and soul he will be ok. I'm scared.
I don't want to see him go through this.
But I believe God has great things planned for Alex here on earth. He's
always been my Alexander the Great, he will go on to be that to others too.
I've tried to teach my children that something good always comes from
something bad. I've learned not to question God's plans and what I don't
see at the time will become clear later if I take the time to look. I thank
God for family, friends, doctors, nurses, our pastor, research scientists,
people I don't even know and will never know who have played a role or will
play a role in our lives during this time.
I can't begin to thank all of you
for your support and prayers. God has sent so many angels our way in the
past few weeks. I believe in miracles, we see them everyday.
Please keep
praying for Alex.
MONDAY, SEPTEMBER 19, 2005
Alex had his first appointment with the radiation doctor today and was
fitted for his radiation mask. Radiation and chemo therapy will begin
tomorrow and last for the next 6 weeks. We will still be going to Duke
University in North Carolina for a follow up and any further treatment that
may be necessary when treatment here in Sioux Falls is completed.
The tumor is pressing on a part of Alex's brain that affects his short term
memory. The doctors cannot say whether he will regain his short term memory
or not once the tumor has shrank. I'm very optimistic he will since I have
noticed a great improvement just since the placement of the shunt. However,
I just wanted everyone to be aware of it in case you talk to him and tell
him something and he doesn't remember it. Right now we're not sure exactly
how much of it is improving since he's learned to mess with us and pretend
he doesn't remember when he really does. He gets a good laugh out of it!!
Alex's spirits are good. He's back to his ornery self, picking on his
sister and the cat. He's feeling pretty good right now. The doctors say a
few weeks into the radiation and chemo he may start to get fatigued. Feel
free to call him or drop him a note either on the web page or by mail if you
prefer.
Wishes can be sent to:
Alex Bindert
PO Box 783
Brandon, SD 57005
Once again, I will continue to update everyone with his progress. Please
keep him in your prayers!
I believe in miracles!! Kelly
On August 29th Alex was diagnosed with a brain tumor.
On September 1st, the
doctors did a craniotomy to try to remove the tumor. They were unsuccessful.
The biopsy showed that Alex has a grade 3 Anaplastic
Astrocytoma brain
tumor.
The tumor is located in the center of his brain in his thalamus. The
tumor is not allowing the cerebral fluid to drain, thus causing pressure to
build up.
On September 7th, Alex underwent surgery again, this time the
doctors put in place a shunt to help relieve some of the pressure. Because
the tumor is cancerous, the next step in treatment is radiation and
chemotherapy.
Alex will start his chemo and radiation treatments on Monday
(9/19) in Sioux Falls for the next six weeks and then in
November Alex will head to Duke University in Durham, North Carolina for the final phase of the clinical trials.
Please check the website often as I (Kelly) will update
it with Alex's progress. Also, feel free to leave a note or message for
Alex anytime.
We appreciate the incredible support and prayers our friends and family have
given to us during this trying time. Please continue to keep Alex in your prayers everyday.
~ Kelly
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