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!

[top of page]

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!!

[top of page]

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

[top of page]

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!!

[top of page]

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!!

[top of page]

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!!

[top of page]

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!!

[top of page]

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!!

[top of page]

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!

[top of page]

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)

[top of page]

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!!!

[top of page]

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!

[top of page]

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!!

[top of page]

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!!

[top of page]

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!

[top of page]

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!!!

[top of page]

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 pra