Wednesday, April 29, 2009

Day +28 and Going Strong













Finally finding a few free moments to bring you all an update on things here at home. Max is now at day +28 (28 days post transplant) and he continues to do very well. He seems to be gaining back more and more of his energy each day and is really enjoying being at home. We have spent loads of time playing basketball and video games, building legos and just enjoying time together.

We have been down to the hospital twice since I last wrote and the doctors are very pleased with Max's progress at this point. They are continuing to watch his CMV level (the virus that I told you was dormant in his body last week) and it has been rising. They may need to change our course of action if the level continues to go up and there is a possibility that it would involve going back into the hospital for several days to get a specific medication. We are due back down there on Friday again so we should know at that point what the plan will be, if not before then.

The boys had a sleepover last Friday with their Poppy (my dad). When I asked Max what he wanted to do when he got home from the hospital, he said that he wanted to have a sleepover in the family room with Poppy and watch movies and eat smores. So, we arranged for that to happen last Friday. The guys watched the Cavaliers game and ate delicious Graeters ice cream (courtesy of my Aunt Annie and Uncle Garry...thanks guys) along with smores. Then they stayed up late telling each other goofy stories and giggling until mommy told Poppy that it was time for bed! :) Nobody has a Poppy like Max and Alex do...he is their best buddy.


Things have definitely settled down around here and we are beginning to create some new routines again. I am getting the hang of administering the IV medications...it has actually become somewhat simple already. We are already down to just two in the morning and the evening (they cut the overnight fluids thankfully) and know that with time we will be done with them completely. The doctors are also going to begin weening Max from the steroids (given to help prevent graft vs. host) on Friday which is great news since those make his heart race and give him a ravenous appetitite! So, things are progressing and are "boring" at the moment...something that we grew to LOVE during our hospital stay. As the doctors would always say there, "we LOVE boring."

I have had some questions lately regarding Ellee and how she is doing so, I wanted to let everyone know that she is doing great. She has healed amazingly well. You can barely see the marks on her lower back/hip area where they harvested the marrow. She seems to have her normal energy back and looks great (ie no more paleness). Quite an astonishing thing. I was watching she and Max play together this morning and thinking to myself, "wow...HER blood is pumping away in HIS body now! What a miracle!"

Matt and I are beginning to see the light at the end of this long tunnel more and more each day and really begin to feel the enormity and beauty of this story. It has really been a whirl-wind to think that this all began less than four months ago (January 12th) and here we are, already at home after Max's bone marrow transplant. I don't think we have had the chance to really reflect on what has been going on in our lives and now that we are getting some time to do that, we are a bit floored by it all.

I met a wonderful woman in the grocery store yesterday, of all places. The Starbucks lady, Suzanne, who I have struck up a friendship with (yes, I frequent Starbucks way too much) connected the two of us, thankfully. Her son is a fifth grader at Maddux Elementary here in Anderson Township and is currently undergoing treatment for a brain tumor. We also met another family while we were in the hospital who's son, Tony is going through the same thing. They are also from Cincinnati and were the only other family in the BMT unit that was from here, like us. The boys undergo multiple rounds of stem cell transplants from their own bodies due to the intensity of the chemotherapy needed to treat their conditions. These families are incredible and I feel honored to be in their company. These unfortunate situations in all of our lives have drawn us together and we hope to all celebrate the health of our beautiful sons together soon.

I have learned so much through this experience and continue to learn more everyday. It has definitely changed my perspectives and priorities in life, to say the least. I have already learned to cherish each day that I have with my kids and to make the most of life every single minute. I am not letting the little things get in the way of the big ones...like cuddling, building Legos, playing basketball, tickling, etc! I am looking forward to spending lots and lots more time just having fun with my little ones in the future.

That's it for today on this marathon journey. I promise to write more soon.

Love,
Kristi (and Matt, Max, Alex and Ellee)

Thursday, April 23, 2009

From the Home Front

video



Three days at home and mom is about to go crazy already! Just kidding but, things are definitely taking some getting used to again! It's wonderful to be home, no doubt about that...but, it is quite challenging for me at the moment. As I've said to Matt a few times throughout this experience, things were busy for us before this happened with Max! So, now they are just plain chaotic much of the time.

Besides trying to take care of the three of them, which has it's own set of never-ending demands, I feel like I am quite litterally trying to be a nurse for Max. I am running three different IV medicines twice a day (cyclosporine and gancyclovir in the morning and evening and fluids over night) and giving him more than 12 different oral medications four different times throughout the day! It is quite a load! We have said to each other several times that there have just got to be people that cannot handle this...so, we asked the Home Care nurse about it the other night and she said that there definitely are people that can't handle it...and they are in the hospital for a LOT longer time! So, it is worth the juggling...it's just exhausting! I keep thinking that they are going to call me one of these days from down there and say, "actually, we were just testing you to see if mom's can really handle this." Don't I wish!

On top of the meds, Max has quite a HUGE appetite! I think he is training me for when he and Alex are teenagers! He pretty much eats non-stop...all normal behavior from the steroid that he is on. A typical snack for him these days is a bowl of mac n cheese or a slice a pizza! A bit different than the granola bar or cheese stick of his former days. However, they already talked at our visit yesterday about starting to ween him from the steroid over the next month so, that is good news for our grocery bills!


I'm not complaining (well, maybe I am a little bit), it is fabulous to be home! Max has said it so many times...especially as he climbs into bed at night and wakes up first thing in the morning. There is NOTHING like your own cozy bed. I feel like being here is really going to help him to heal even better. We no longer have the major germ risk that being down at the hospital 24x7 posed and he is definitely more comfortable resting here.

It's been tough for Max though too since we've been home...especially since the Cincinnnati weather has turned today and it is beautiful and 70 degrees outside. He is getting the itch to do his normal hoops shooting in the driveway, biking, scooter riding and ramping and, obviously, much of that is out for some time yet. He is allowed to venture outside but, he needs to wear his mask, which he hates, and he has to be extremely careful about the sun as over-exposure to it could trigger graft vs. host disease, a dangerous potential complication at this point in the marathon transplant process. So, his doctor said at our check-up visit yesterday that a shady walk down a sidewalk would be ok but, not a whole lot more than that. We are trying to figure a way to get him out shooting some hoops at least or something a bit more fun like that. He also has to avoid areas with lots of wood and mulch because of the possibility of mold spores that could also affect him at this point. So, getting outside is challenging and it's been tough looking out at this gorgeous day and not being able to enjoy it as we usually would. But, I keep reminding Max that this is only temporary and with time, we'll be able to do more and more until we get back to normal eventually.

We are getting creative about staying entertained. We have two new hoops in the basement for the boys to slam on (as you can see in the video) and we have taken a couple of car rides jusst to get out a bit. We got ice cream and went through the car wash last night...a big family outing! Today we got ice cream at the Graeters drive thru and drove past Coldstream Country Club to see the people golfing. Such fun!

We got some wonderful news this week, again...Max has been granted a wish from the Make A Wish Foundation! We are thrilled about this, of course, and can't wait for the day when Max gets to have his wish come true and just be a 7-year old kid again for a while. It probably won't happen for some time yet due to his need for immune system growth but, stay posted for more about that exciting part of this adventure...we expect that the wish will have something to do with a certain Mr. Tony Hawk!

We are back down to Children's for the majority of the day tomorrow to what they call the Day Hospital. Max will have an infusion of a medicine called Cytogam to protect him against cytomegalovirus (CMV). CMV is a common virus that can lay dormant in people's bodies that Max tested positive for after transplant. It is currently inactive in his body and they want to keep it that way as it could be dangerous with his suppressed immune system. In fact, a common cold could be dangerous. Yesterday I asked the doctor if Max could have his cousin William over to play for a bit and she immediately told me no and followed by saying that even a cold virus could put Max in the ICU down at Children's as he has zero t-cells (major infection fighting white cells) right now. So, no visitors the kids ages for a while...bummer.

When we came home on Monday, the house was decorated adorably with balloons and banners for Max (as you can see in the attached picture). Max loved it and felt very special. Thanks to all our neighbors and friends that made that happen. It was much appreciated by Max as well as all of us. A bit after we got settled in at home, our neighbor Katie called to tell us that there was a beautiful rainbow over the house (see the picture below). We ran out to see it and were flabergasted to see a huge arching rainbow framing the house...I swear to you! It sure felt like a smile from above to Matt and I!
It's very busy here at home but, I promise to find minutes here and there to keep you all updated on Max's progress. Please keep your prayers coming as he has a very long road ahead and we all need patience and strength to endure it!

Peace and love,
Kristi (and Matt, Max, Alex and Ellee)

Sunday, April 19, 2009

"I'm going home...back to the place where I belong..."

We're packed up and ready to go tonight! Max is doing great and VERY excited about going home tomorrow! Alex is equally excited about seeing his big brother and even Ellee seems to know something is coming. She kept talking about "Maxi" and the "ho-pi-tal" (as she says it) this morning. We are now counting down the hours and planning a family celebration tomorrow night!

One of Max's doctors told me tonight that he is "a rockstar" and his PCA said that it's the quickest that she has ever seen someone released after transplant! We are extremely thankful that Max has done so well so far and that we are getting to go home and be all together!

We will probably be back down here for most of the day on Tuesday and/or Wednesday at the Clinic/Day Hospital as Max will need some infusions of medications that only they can give him down here. I'm sure we'll probably be back on Thursday or Friday too (or possibly both) for monitoring, etc. I'll get the initial schedule of appointments tomorrow and will know more at that point when we will be here and for how long each week, etc. But, at least we'll be sleeping in our own beds and spending A LOT more time at home together!

As we've told you on the blog, Max's favorite singer with whom he shares a birthday is Chris Daughtry. His favorite song by Daughtry is "Home" and it is extremely fitting for tomorrow's occasion. We will be listening to it on the way home and plan to jam out all together to it also once we get home. It's been Max's plan since before we were admitted here.

There is a fabulous music therapist down here at Children's that has visited Max several times and made a recording of him singing "Home" with Daughtry. I've tried to attach it for you all to enjoy and to play tomorrow in honor of Maxer's homecoming, but I can't get it to work. Maybe it will work once we are home tomorrow. He did a great job singing it...knew all the words! Maybe he'll be a singer some day!

The next few weeks will be another big adjustment for us again but, a much better one, being that we will be re-adjusting to being at home all together again. We will continue to update you all regularly, I promise. Hopefully we'll get a lot more of Alex and Ellee on here too!

Thanks, again for all your support, love and prayers! As Daughtry would say..."these places and these faces are getting old....I'm going home!"

Love,
Kristi (and Matt, Max, Alex and Ellee)


Thursday, April 16, 2009

Engraftment and Home Sweet Home

LOTS of wonderful news to share with everyone today...Max is 99% engrafted with Ellee's marrow (in other words, 99% of the cells in his body are Ellee's...wow!) and he is starting to like Hannah Montana as a result (just kidding...I love to tease him about this all the time now). In addition, because he is doing so super phenomenally well, they are planning to discharge us on MONDAY!!! That's right...we are planning to come home in just 4 days! Woo! Hoo!

We are crossing our fingers and saying our prayers that everything continues to go well so that we truly can come home on Monday and all be together again! I have been working with a great Home Care Nurse here to learn how to give Max one IV medicine (called cyclosporine) and IV fluids over night as well as how to change the dressing and caps on his central line. You all can just call me Nurse Kristi now anytime you want! It's a bit overwhelming and scary but, I have learned that all of it becomes very do-able and actually easy with time.


Maxer is generally doing great. He definitely looks different (as you can probably notice in the attached pic). He is almost bald (some peach fuzz on his noggin) and his cheeks have really blossomed out from the steroid that he is on but, he still looks wonderful considering what he has been through. He is currently not showing any signs of what is called Graft vs. Host Disease, a serious complication that can arise if the body decides to attack the new marrow and tries to produce antibodies against it so we are hopeful that he will not have issues with that, although they could still arise over time.


Max has finally been allowed to leave him room and we have enjoyed trips to the therapy gym to play basketball yesterday and to the playroom today to play with some Model Magic and Playstation 3 (you know, the Playstation 2 in our room just isn't good enough). We have also taken some walks through the halls with his little handy dandy mask on the last two nights to stretch our legs and get a little change of scenery for Maxer.


Obviously we are totally thrilled to be heading home and are really feeling the light beaming at the end of the tunnel right now...even though it's still a pretty long tunnel. We are hopefully through the toughest part of Max's Magnificent Miles and on the road to recovery!


We credit Max's amazing response so far to many different things - Ellee's healthy and perfectly matched marrow; the unbelievable doctor's and nurses down here; our incredible extended families that have helped us through this in every way through every step; the fabulous supportive community that we have; the awesome parents we have met down here and developed friendships with; and the unending thoughts and prayers for all of us. We know that we can get through the rest of this journey with all of you behind us and have one BEAUTIFUL story to share with anyone who will listen!


Thank you for everything you all have done to make this marathon as successful as possible so far...and keep running with us as we enter into the next stage on Monday! Max's Magnificent Miles are going to be something to remember and celebrate for ever!


We love you all!

Kristi (and Matt, Max, Alex and Ellee)

Monday, April 13, 2009

Max's Magnificent Miles

Matt and I have been thinking about how to convey the long journey that we are on better to everyone and have decided that it would be good to use an analogy to something like the Tour de France or a marathon. Max's journey through the BMT process is a long one, as I think most of you realize and we thought it would be helpful for everyone to understand more realistically where we are in the journey at each point in time. The BMT process is broken up into three phases...preparation; harvest and transplant; and growth and recovery. We have made it through the preparation phase and are deep into the harvest and transplant phase now. Once we know that the bone marrow has "officially" engrafted in Max, then we will move into the growth and recovery phase.

Max's blood counts were terrific again today. The marrow from Ellee certainly seems to be doing what we all hoped it would! His ANC is now at 1470 which is TONS higher than it has been in months! However, the difference now versus before we began the BMT process is that Max has no immune system...in other words, he has no immunities built up in his body and thus will catch any virus, fungus, bacteria, etc that happens to come his way. Of course, some of those could be nasty little germs that could cause him major problems. The worst offenders are usually viruses for which there are no medicines (like antibiotics) that the doctors can use to fend them off and help Max recover. Thus, as we move into the growth and recovery phase and head home, we will still be under strict isolation requirements. Max will be unable to leave the house, essentially, except to come down here to the hospital for regular check-ups (probably 3 times per week at first). That isolation will continue until at least day 100 which means 100 days post the transplant day (or 100 days post April 1st...late July). We will also need to be careful at home with germ control to minimize the potential for Max to pick something up from one of us. LOTS of Clorox wipes and antibacterial hand gels, etc!


The doctors said today that they will check the level of engraftment of Ellee's marrow in Max tomorrow and should know later this week where things stand. The engraftment is checked through a simple blood draw through Max's central line...something that is done at least once everyday right now and has become a very regular occurrence for Max. They are working on potentially sending us home sometime next week! Max is also allowed to get out of his room tonight for a walk or Big Wheel ride around the floor at about 7:00!


So, while this current news of engraftment and rising counts is extremely joyful and something we are very thankful for, we are also hesitant to celebrate right now. We still have a very long road ahead. It is very likely that we will be back in the hospital for a few days to a week at a time more than once within the first 100 days post transplant. If Max has any fevers, it is an automatic admission down here again for observation and analysis to be sure there are no major issues.


We tell you all this not to bum you out but so that you understand when Matt and I are not as excited as you might think we should be sometimes. Our standard thought to each other these days is that we will throw one heck of a party about two years from now when we get the "all clear" from the doctors and know that we can go and do anything we want to as a family and Max will be fine! That is typically what we have been told to expect from a timing perspective on this journey. The growth and recovery phase will not truly be over until that point. The first year will be a matter of growth of Max's immune system and the second year will be a journey through re-immunization. Max will have to be re-vaccinated as he has lost all the previous immunity that he had from the immunizations he has received since he was born.


So, bear with us on this marathon journey...and get ready for one HUGE celebration in 2011!


I have attached a picture of Matt and Max with their new hairdos...Max's hair was falling out like crazy so we decided on a buzz to make it less itchy. He asked Daddy to do it with him and Matt agreed. Don't be shocked when you see Matt out and about with no hair! Mommy did the buzzing...it was my first time and I could definitely stand to improve on my technique in the future!


Thank you for the amazing amount of support that you all have given all of us. It has meant so much to us so far along Max's Magnificent Miles and we know that it will continue to sustain us through the rest of this marathon!


Peace and Love,

Kristi (and Matt, Max, Alex and Ellee)

Saturday, April 11, 2009

Doin' a Happy Dance

GREAT NEWS!!! Max has Ellee's white cells running around in his body as of this morning!!! His white count is up significantly to 0.7 and his ANC (the count of nutrafils, or infection fighting white cells) is also up to 100! The bottom line is....the transplant is engrafting and beginning to heal Max!!!!!!!

We are so thrilled, of course, and are celebrating in our room this morning with a little happy dance! The doctors have all stopped in to share in the wonderful news! Now we just need LOTS of time to build up Max's counts and immune system. But, hopefully we'll be able to head home within the next few weeks. Max's ANC has to be 500 in order for that to even be considered and he has to be able to take many of his meds by mouth, which we are hard at work on now.

Just wanted to pass along our great news from today as soon as I could. Thanks so much for all your continued thoughts and prayers! They are working! We'll keep you posted.

Love,
Kristi (and Matt, Max, Alex and Ellee)

Friday, April 10, 2009

Ice Cream, Marshmellows, Hair and Counts!

We've had a string of good days this week. Max is doing well overall and feeling much better than he did the last few weeks. He's starting to get some energy back and is definitely eating well and having some fun playing. He is beginning to transition over to oral medications from the IV meds so that we can get out of here as soon as his white cell counts begin to rise. We are hopeful that it will be about 2 weeks and we will be heading home! In order to get the medicine down, Max has been enjoying LOTS of Graeters Black Raspberry Chip ice cream, as you can see in the picture!

Yesterday the Child Life rep that we have become buddies with brought in a special treat for Max. She had a marshmellow blaster gun and she and Max had a ball shooting mini marshmellows at a target that they made with all of the things he hates about being in the hospital on it. It was a great release for him as he has definitely had plenty of frustations lately being in here so long and on steroids, to top things off! I have attached a video of some of it so you all can enjoy the fun too.

Max's hair is beginning to shed like crazy today and we are just waiting to see what happens here in the next few days. There is a chance that it will just thin but it is more likely that he will lose it all. We are contemplating doing a little buzz and Matt may join him. We'll be sure to take pictures of it if it happens.

We did get some initial good news this morning also. The monocytes, which are one of the first indicators of engraftment of Ellee's marrow in Max were up in the counts this morning so, everyone is hopeful around here that we will see some progress with Max's white cells over the weekend! Perfect Easter present!

Our Easter this year will be a bit different, to say the least. The Easter Bunny is planning to visit Max here in the hospital and Alex and Ellee at home. Matt and I are splitting the duty of staying here this weekend too. I'll be here tonight and tomorrow night with Max so that I can go home tomorrow to take Alex and Ellee to our neighborhood Easter egg hunt. Matt will spend Easter morning with Alex and Ellee and then come down here to stay on Sunday evening so that I can take Alex and Ellee to dinner with my family. Unfortunately we can't all be together but, we all understand that this is a small price to pay for the opportunity to give Max the rest of his life back! Lots more Easters together in the future!

Hope you all enjoy a Happy Easter! We hope to be able to share some wonderful news regarding Max's full engraftment soon.

Love,
Kristi (and Matt, Max, Alex and Ellee)


video

Tuesday, April 7, 2009

What a Difference a Day Can Make!


A day can make such a difference! On Sunday when I last wrote, Max was really struggling. The doctors and nurses were working on helping him with both his nausea and his blood pressure. As a result, he woke up yesterday feeling much better and we have now had two good days in a row ("knock on wood")! We are thrilled and so is Max. He has been eating well and has finally stopped getting sick! He still struggles some with high blood pressure but, the doctors have called in the Renal Team here at Childrens and they are helping to find a solution that will get it under control once and for all. The Renal Team did a full evaluation of his kidney function yesterday and determined that besides his kidneys being "grumpy" from all the medicine he's had, they are functioning well. That was a HUGE relief, to say the least.


I thought I'd put a picture of his IV pole in this post so that you all can get a sense for the amount of medicine this guy is on! It's quite unbelieveable and overwhelming to look at this and to think about what is going on inside that little body as a result. Most of it is profilactic, meaning it is helping to fend off germs until his immune system is back in place. The remainder of it is helping his body to accept the engraftment of Ellee's marrow and spur it to grow. He has four pumps on his pole and there are about 20 different medicines that he gets between 2 and 3 times a day. He will continue to be on some of these even after we go home and the nurse told me today that some of them will continue for the whole first year after transplant!


Overall, Max is doing quite well right now and we are extremely grateful for that. We can expect to have some more ups and downs over the next week or so but, hopefully we have made it through the worst. Only time will tell.


The doctors have said that it is possible that Max's blood lines may be improving by later this week and that engraftment may be occurring by then! We are excited about that possibility and hopeful that we will have some wonderful news to share with all of you soon...maybe even before Easter!


Alex and Ellee and doing great at home too. They have been enjoying time with their cousins and aunts this week while they are on spring break (although the Cincy weather is definitely not cooperating with them).


We are all very anxious to be back home together and hope that it might be within about 2 or 3 weeks time! We'll keep you posted as things progress.


Love,

Kristi (and Matt, Max, Alex and Ellee)

Sunday, April 5, 2009

In the Fight of His Life

Maxer is deep into the fight of his life. He's really not feeling well right now and it has been quite intense lately. This is what we expected but it's still very tough. His blood pressure has been giving the doctor's and nurses's some fits. They have tried for three days now to get it under control and seem to be having some mixed success today. It has been quite nerve racking for Matt and I to watch. He is spiking pressures in the 165/112 range...WAY too high for his age! In addition, he has been continuing to have bad nausea and vomitting, despite their attempts to get that under control too. He also seems to be developing mucositis today which is where the digestive tract develops sores from the chemotherapy and causes pain in the throat and mouth (from the sores) and more stomach irritation.

I don't tell you all this to depress you or make you feel badly for Max, although I'm sure it will do that. I tell you just so you understand what he is going through and how difficult this is for a little seven year old boy. I told him last night that sometimes in life things have to get worse before they get better but that after he gets through this, he will be able to accomplish anything he sets his mind to in life! He will be the toughest kid that anyone knows! This is the fight of his life.


Ellee seems to be healing very well. She is very pale, which is to be expected given the amount of marrow that they took from her body and she is on iron to help her rebuild that. They have said that it could take up to 6 weeks for her to get herself back to where she was before the harvest. However, other than the paleness, she seems to be feeling fine and getting around in her curious and mischevious ways just like before!

Alex is hanging in there too. He definitely misses being all together but he is "staying strong" for his brother and has adjusted to not having Maxi and his mom or dad around. He had a great time hanging with his Papi and his Aunt and cousins last week while the transplant was going on. It made him feel very special to have some extra fun during that scary time.

Matt and I are coping. I have to say that watching Max go through all of this lately has probably been some of the toughest times for us. He just feels miserable and it is scary to see his blood pressure going crazy like that and to watch him get sick time and time again when there is nothing in his little tummy to get out. We have put our trust in the doctors and nurses here and know that they are doing everything they can to make this work and to get Max through it with as little pain and sufferring as possible. We also continue to trust that God is with Max and will get him through this and put him on the path to healing very soon. We take comfort in the fact that Dr. Davies told us at the beginning of this process that these two weeks would be when Max was feeling the worst and that he would need us the most during this time. It's just still not easy.

So, please continue your thoughts and prayers for us...we know that they are making a difference and that they will sustain us through this most difficult time. Max will get through this and will go on to live one heck of a life...we know it. This process will make him even stronger and more capable of becoming someone spectacular.
Peace, love and hugs to all.
Kristi (and Matt, Max, Alex and Ellee)

P.S. - How bout them Spartans?!?! Go MSU!!!! One bright light in the midst of all this! Maxer had them in the final game with XU so, he is doing quite well in his pool.

Thursday, April 2, 2009

An Angel with An Amazing Gift


Wow...yesterday was quite a day for all of us! I'm just able to sit down here now to type in a quick note to everyone to let you know that things went and continue to go as expected at this point, for the most part. Ellee did well overall yesterday with her surgery although we had a couple of real scares with her after the fact. At two different points yesterday, she got upset and ended up not breathing for a few seconds! It was very scary, to say the least, but they believe that it occurred as a result of the anesthesia and pain medications that she was given and she seemed to be over it by late in the day yesterday. She was discharged about noon today and has been sleeping away the afternoon at home with daddy in her own cozy bed! It was one HUGE day for a little baby girl.

But, at 17 months old, she has already done something that few people will ever accomplish in their entire lives...she has begun the process of saving someone's life...her own big brothers! Max got the bone marrow infusion from Ellee at about noon yesterday and it was finished at about 3:30 (if you look closely in the picture of him, you can actually see the line with the marrow in it hooked up to his central line and going into his body). He felt amazingly good afterwards and was up playing games and eating! Unfortunately, he is not feeling as well today but, that is definitely expected at this point. He will likely have many ups and downs over the next few weeks as his body adjusts and Ellee's marrow begins to engraft. He has also been battling high blood pressure for the last few days as well as nausea so both of those are contributing to his yucky feeling.

Watching the actual infusion of the bone marrow was definitely a sacred moment for Matt and I, as well as our Pastor...the gift of life in the truest sense! We can only hope and pray that things continue to go as well as they have for Max so far and that within a few weeks we will be headed home with him and on the road to recovery!

Max continues to be strong and patient, though he does have his moments as the cumulative effect of all of this adds up on him. Matt and I are emotionally and physically drained but remain faithful, hopeful, thankful and strong.

We can't tell you what it means that we have so many people pulling for us in this situation! Your thoughts and prayers mean the world to us. It really helps us get through the tough moments...and there have been plenty of those.

We'll keep you posted as things progress over the next few days and weeks. Pray for the best outcome possible!

Thanks.

Love,
Kristi (and Matt, Max, Alex and Ellee)




Wednesday, April 1, 2009

The Transplant

Today was a HUGE day. Thanks to all of you for your prayers and love. Max and Ellee are tired but resting and recovering now. Things seemed to go as planned and Max received the transplant late this morning into early afternoon. I am sure Matt and Kristi will update the blog soon when they have a little free time, but I wanted to give all of you loyal followers the news that I had. Keep believing and praying. Max, Ellee and my brother and sister-in-law are all heros. I admire them daily.
-aunt sarah