Day + 157: The Harsh Reality of the BMT World

It's 10:45 pm on the evening of day +157 for Max and I can't sleep. We received heartbreaking news over and over again last evening and today and Matt and I have really been distraught about it. Three of the families that we came to know while living in the BMT unit at Children's Hospital lost their children the last two days. An unthinkable and tragic ending for all three of them. One of them was an 18 year old boy named Troy who was waging a battle against BMT complications while we were in the hospital and who fought for months since we left, ultimately losing his battle yesterday, surrounded by loving friends and family. The second child was a sweet 2 year old baby boy, Andrew, who's family has been through what no family should ever have to endure. Andrew was diagnosed with a rare condition called HLH when he was a newborn baby and went through three bone marrow transplants, the third of which took place here in Cincinnati because of their world-renowned reputation for the treatment of HLH patients. He was doing well and had even been discharged from the hospital, living here in town with him mom in an apartment. Unknown complications started about 2 weeks ago, around his day +160 and ultimately took him from us. The even more unbelieveable part of this family's story is that the family discovered after Andrew was diagnosed that their other child, Matthew, now 4 1/2, also had HLH and needed a bone marrow transplant. Matthew is currently undergoing his transplant at Children's and is at about day +10. Hard to even begin to imagine what this family has endured and is continuing to endure. Andrew and Matthew's mother, Kristin, is amazing. She was a wealth of information and inspiration for us while we were in the unit and continues to be so to this day. Finally, the third child to leave this earth today was a young woman from Dayton, Keri. She was in college and enjoying life when she was told that she needed a bone marrow transplant to live. Her sister was her donor and Keri was in the room next to Max when we first arrived in the unit. We didn't get to know her family as well as the families of the other two kids because she was discharged shortly after we arrived in the unit. Unfortunately, complications later brought her back to the hospital and ultimately, she too was taken from this earth.

Obviously, Matt and I are struggling to make sense of all this suffering and hardship. As we have said before, it was somewhat easier when we were oblivious to these awful diseases but now that we know, we feel so compelled to help these kids and their families. What they endure should not have to be endured by anyone.

This horrible news tops off what has been quite a tough week for all of us. Of course, in some sense, it makes us stop and realize how blessed we are and be so very grateful for where we are right now. I can't tell you how many times I have just stopped yesterday and today and grabbed one of my kids and squeezed them so tight, kissing them and telling them how much I love them. I am so very blessed to have three beautiful children and to have Max doing so well through this extremely challenging experience. And yet, with that said, we feel that we need to acknowledge how "extremely challenging" this experience continues to be for all of us, despite all of our tremendous blessings. This week was a huge down on the BMT roller coaster. Although Max has continued to feel better and better each day and seems to be getting over the adenovirus quite well so far, he has struggled much in the more psychological and emotional ways. The reality of school being back in session has really set in for him and it is so very tough to be outside of that world.

On Wednesday evening, Max asked me, "Mommy, why did God diagnose me with Aplastic Anemia?" I wasn't sure how to respond but did my best to tell him that it really wasn't God that diagnosed him, that sometimes people just get sick because of the way we live on the earth and that it was nothing that he did wrong or there was no reason why he got sick. Then I told him that it was a good question for us to talk to our Pastor about and we agreed that we would do that soon. After that, I said, "Why do you ask, honey? Are you sad about being sick tonight? Is it bothering you today?" And he said, "Yes. I just wish I could play with my friends." The next evening, Thursday, as Matt was tucking Max in and saying their prayers (which Max usually just listens to and doesn't chime in on), Max said, "God, please continue to heal me so that I can get on that bus and go see my buddies at school." Matt could hardly contain his tears in front of Max and told me the story with tears in his eyes when I got home that night. Just imagine your child gets the chicken pox or some other contagious illness like that and is told by the school that they cannot attend for a week and that they really shouldn't play with any other children while they are at home. Now times that by 52, roughly, for the situation that we are in with Max.

This is not easy...despite all the blessings that we have been given throughout this process, it just is not easy. Now, for one minute, put yourself in the shoes of these families that we spoke of in the first paragraph above...they have been through all that we have, probably worse, and now they have lost their children. It is a pain that no one should have to endure.

I don't tell you all this to depress you. I tell you to motivate you. Do something with this information to make your life better and more meaningful. It can be something simple - take more time just to hug and cuddle your children and be sure they know how much you love them. In its way, that can be a lasting legacy of the three children that were lost. Or, do something huge - start donating blood or platelets as often as you are allowed; register to be a bone marrow donor; volunteer at the Ronald McDonald house or a children's hospital in your area... Or, do something fun and easy - walk with us in the Cincinnati Walks for Kids. It's a great way to show your support of the folks that have done everything they knew to do to save these three great kids and lost their battles as well. Sponsoring one of us will also provide more funds that can be directed at research to help prevent this from happening to all these families, including ours, in the future.

Finally, you can pray and advocate for these kids and their families. All of you that have endlessly supported us through this journey now know a whole lot about the bone marrow transplant process and how difficult it is...most people don't have the first clue what it's all about. That gives you the power to help - just by spreading the word about what you have learned. The more people that know, the more support that research and support for patients with these life threatening conditions will receive...and that will make a difference.

I don't want to sound like I'm preaching...like I know so much now from what we have been through. I just want to try to motivate as many people as possible to do something to make a difference in the lives of these kids and their families so that in the future, less lives are lost and less suffering is endured.

Thanks for your continued support. It means a lot to know that people are reading, listening, thinking and praying about our family and all of the families that we have met throughout this journey. It's a long and difficult one...

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

Day +154: Answers and Progress

Today is day +154 and we have an answer as to what has been causing Max's "poopee" issues. We were told yesterday that his stool tested positive for adenovirus. It is a very common virus, affecting the majority of the population at least once by the time you are 10 years old. The virus infects the membranes of the respiratory tract, eyes, digestive tract and urinary tract and causes diahrrea and respiratory infection. Never thought I'd know so much about a virus! Adenovirus for a normal immune functioning person is no big deal and resolves itself on its own as the immune system fights it off and forms antibodies. For Max, this fight remains a bit bigger and will probably take him more time but, with the help of the IVIG that he receives every other week, he should be adequately protected and be able to eventually fight it off (as a reminder, the IVIG is the $16,000 per dose medication created from multiple people's immunoglobulins). In the meantime, we have to keep him extremely well hydrated and watch for any signs of worsening as there can be serious complications with adenovirus in immune suppressed people. If anything gets worse, the doctor told me yesterday that they will likely up the amount of IVIG that he is receiving in hopes that more would help him fight the virus. So, I will continue watching him closely and be ready to run down there at any point if necessary to keep him safe, as usual. Beyond that, it will mean that Max will be in "strict contact isolation" when we are at the hospital so that the germ is not passed to any other patients. In laymans terms, I have come to learn that "strict contact isolation" means that the doctors and nurses and any other hospital employee that comes into his room (including cleaning people, etc) will have to wear a special gown, mask and gloves. This (theoretically) prevents them from taking a germ from one patient to another.

It is great to have an answer and to know what we are dealing with, as well as to hear them say that they feel they can keep it in check at this point. Of course, it's still a bit scary...anytime you read a website about a germ and it says "patients with compromised immune systems are especially susceptible to severe complications of adenovirus infection" (the CDCs website), you get a bit freaked out! I'll just continue my obsessive watch over Max and his body's condition and hope that by remaining vigilant, we will ride out the germ and this bump in the road. Where we picked up this germ will always be a mystery although, I think it may have been Ellee and a simple trip to the grocery store. About three weeks ago, she came down with conjunctivitis out of no where and none of the rest of us got it. Her doctor gave me some drops and it cleared right up - it was pretty weird, not like normal pink eye. About a week and a half later, Max started with the tummy issues and Alex had his fever, followed by some congestion. My theory is that it's all adenovirus and despite the fact that I had wiped the cart down, covered it with a baby seat cover, cleaned Ellee's hands multiple times both inside and outside of the store, it got us! Goes to show how virulent these germs are (not to freak anyone out...sorry)!

We did have to make a trip down to the hospital yesterday morning per the request of our nurse practitioner, Paula. We have been continuing to tweak Max's cyclosporine level (his immune suppression medication) and made another small increase in his dose last Friday. As a result, they wanted to check the level in his blood again to be sure it is back where they want it to be. They also wanted to see how he was doing with the diahrrea and stomach issues. The biggest task we have right now is keeping Max well hydrated. Under normal circumstances on the cyclosporine, they want him to drink about 40 ounces of liquid a day. The cyclosporine is hard on the kidneys and they want them to be well flushed constantly. They closely watch a panel of renal function numbers in his blood to see how the kidneys are functioning. Those numbers continue to creep up a bit as his cyclosporine dose gets higher...and now with the diahrrea they are concerned and want him to drink even more! I am constantly pestering him to drink, drink, drink and let him have anything he wants that is not caffeinated. He can't have ICEEs, his favorite thing, or fountain soft drinks as they are out on the low bacteria diet that he must follow. But, we have popsicles galore and a fridge full of gatorade and pop for him to choose from...as long as he drinks. We've gotta protect those kidneys!

So, I continue to have lots to worry about, as you can see! Although, I take comfort in the fact that the wonderful doctors and nurses down there are watching him closely still and have a course of action all the time, if it becomes necessary. Max really continues to do great, despite the tummy issues. We have taken a lot of bike rides lately and he will make it for 20 - 30 minutes easily. That says a lot about how he is progressing in my book! We got some fabulous news yesterday as well while we were at the hospital...Max is now 97% engrafted with Ellee's marrow again! It appears that Ellee is winning the little tug of war that was going on inside him and his bones are filling up more and more with her marrow! His cell counts are all looking good too. His white count is the highest it has been in months without the help of any medications, his platelet count remains stable in the normal range and his red cells continue to improve. All great news and wonderful progress!

We had a couple of other exciting things happen this week. Max started his tutoring yesterday and has a really nice home schooling teacher. I think it is going to be very enjoyable for him. We found out last night that we will probably get our puppy, Spud, next Wednesday! We can't wait to have him here - he is going to give us so much to do! We are getting things ready for his arrival and brushing up on puppy potty training, etc. I also spoke with Alex's teacher this week and we coordinated ways to get him the plans and materials she will be using each week so that I can work with him until he can return to school in a few months. Everyone was very understanding and offerring to do whatever they could to help Alex with school also. My brother, Patrick is back in town so we had fun last night having a dance party with him (picture with Max in the air). And finally, they finished paving our road the other day and the kids really enjoyed watching the steam roller (or the roller coaster, as Ellee kept calling it...another picture of them watching it out the storm door window).

Life is progressing. We are beginning to get somewhat of a fall routine around here and are enjoying our extra free time to take bike rides, walks, play games, dance, etc. Things remain challenging but we are getting there, one day at a time. The light at the end of the tunnel keeps getting brighter and brighter, despite the ups and downs along the way. I have been struck by something funny the last fews days that I thought I'd share with you all. I think it gives some perspective on where we are with things. Two days ago, Max and I rode our bikes down Nagel and then last night all of us took a bike ride (Matt with the two younger ones in a cart on the back of his bike). Of course, Max has his mask on since he is outside. I noticed several people looking at us from their cars as they drove past and I thought to myself, "their probably thinking, what a nice night for a bike ride...how nice that a family is out for a ride together." Finally, it dawned on me that they were looking at Max in the mask and probably wondering what was going on with him. I think this shows two big things: how normal this has all become to us and how much we are going on with our lives, enjoying them as much as possible while it is all going on, oblivious to how "horrible" it must look from the outside! We have tried to keep a positive attitude and upbeat perspective on this situation all along and have done our darndest to make the best of it!

That's it for another week - a busy one but a good one again. Thank you, again to all of you that have signed up to walk with us in October or sponsored one of our team members. I think we may be one of the top teams at this rate...let's go for it (check out our team on: http://giving.cincinnatichildrens.org/netcommunity/maxsmightymobs )! We are looking forward to that event and to being able to show the hospital and all of our caregivers how eternally grateful we are for what they have done for all of us!

More soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)

Day +149: A Sigh of Relief

Another quick update tonight...we spent 6 1/2 hours at the Day Hospital today and things appear to be improving with Max. So far, the test results that they have received back have not shown anything of serious concern. In addition, Dr. Davies checked him out thoroughly and in her typical fashion, with all of her experience and knowledge behind her said, "I'm not too excited. I think this will solve itself." Haaaaaaaaaaa...my sigh of relief. Max recieved another bolus of fluid just to be sure he doesn't get dehydrated and I was again instructed to keep a close eye on him and call/bring him to the ER if things worsen over the weekend. Overall, he seems to be improving. He is eating and drinking a bit more and the "poopee" is slowing down.

Another good reminder of how careful we need to continue to be. The nagging thought in my head the last few days has been, "we did too much...we have to be more careful...after all, it's only temporary." Max and I had a great conversation on the way down to the hospital this morning and we agreed that we just have to be extra, extra cautious. We realized as we were talking that we are already over halfway through the most intense part of this journey. He asked how long he has been doing this and I told him since January and then we counted the months - almost 8. I had been explaining that we just really need to be careful for the whole first year post his transplant so then we counted the months until April 1, 2010 - just over 7. At that point, we realized that we are over half way there and decided that we can do this, no problem. We are just going to buckle down (not like we haven't been already but, we are going to double buckle down) and try to keep everyone as safe and healthy as possible.

With this in mind, I talked to the nurses and doctors today about Alex and school and I think we may hold off for a bit. I just don't think I can take the stress of sickness in the house - and I know Alex will get sick at preschool, everyone knows that is a germ factory, unfortunately! Not to mention the swine flu that we keep hearing has popped up more and more around here. So, the plan at this point (which I still need to discuss with my husband - sorry, Matt) is to hold off on school until maybe November or so. We are hoping that the swine flu vaccine will be approved by mid-October and have been told by our docs that our whole family (with the exception of Max) needs to be innoculated and will be tops on the list to receive it down there. We will all get the regular seasonal flu vaccine by then too so the combination will give us a huge layer of protection against the most evil of germs. By that point, Max will be 7 or 8 months post transplant too and the more time, the better for his little "Ellee Cell Garden". I hope that I will be able to relax and deal with germs a little better by then too.

So, that's it for today. Breathing much easier tonight, although still watching our Maxer closely. We're having a fun night too. We had planned a sleep over at Mama and Papi's since Daddy is gone and Max said today at the hospital that there was just about nothing that could keep him from doing that tonight. Luckily he seems to be feeling better and is enjoying playing basketball with Papi and Alex in the basement right now. We have a big game of musical chairs planned for a bit later. I know I'm exhausted already and I'm sure Max is too - we'll all be in bed by 9:00! :)

Thanks for your continued love, thoughts and prayers and for all of you that have signed up to walk or donated already! We have been touched to already see such amazing support of Max and our family...you all rock!

More soon...

Peace and love,
Kristi (and Matt, Max, Alex and Ellee..and Mama and Papi tonight too)

Day +148: A Bit of Lousy Excitement & Walk Registration Instructions

Just a quick update tonight to let you all know that we have had a couple of longish days around here. Max started having some strange "poopies" yesterday and they continued into today, along with Alex coming down with a fever last night which went into this morning. Alex is feeling much better but, Max's issues continued throughout the day today so, I called down to the hospital and we had to make a trip down this afternoon. They collected all kinds of samples from him (poopee, pee-pee and blood) and are hoping for some answers tomorrow. His vitals were a bit off and they suspected that he was a bit dehydrated so, they gave him some IV fluids today and sent us home for the evening with strict instructions to watch him closely and head back down to the ER if anything worsens. We'll be back down there tomorrow at 8:30 am for our regularly scheduled Day Hospital visit and some medication infusions and hope to know more about what is going on with him then. In the meantime, it would ease my mind and worries greatly if any of you could lift him up whenever possible - just praying that he can easily overcome this issue and continue his wonderful progress toward recovery. To top things off, Matt is on his annual golf trip with his buddies this weekend...something that I was excited that he could do, given how our year has gone so far. I hope that he can continue to enjoy it despite these current "obstacles."

On another note, I have heard that there has been some difficulty with registering for the walk through the Max's Mighty Mob page and link that I provided in my last post. If you cannot register that way, try going in through this link: www.cincinnatichildrens.org/walk Once you are there, click on "Register". You'll have to put in some personal info and then it will give you a couple of options, one of them being to "Join a team." Click on that and then type "Max's Mighty Mob" in the box. It should find us and you can then add that to your registration and you will show up on our team page as part of the team. Let me know if anyone has more trouble at kmmaemeyer@yahoo.com. If you want to donate, you should be able to do that by following the directions in my last post.

As I've said before, the bone marrow transplant process is a long roller coaster ride. Downs like the one we are experiencing now are part of the "ride." We are just hopeful that Max will come through this small setback with his hands high in the air yelling "yippee" and continue on that way for the remainder of the "ride."

Thanks for all your love, support, thoughts, prayers, etc. More soon...as I know it.

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

Day +146: Max's Mighty Mob!

It's day +146 and Max continues to do very well in his recovery. It's been 10 days since we have been to the hospital which is by far the longest we have gone without being there since January! I have refrained from calling down there several times, telling myself not to worry and to get used to this...the goal, after all, is to move closer and closer to not going down there at all! Anytime I worry for some reason, I just look at Max and realize how wonderfully he is doing. He looks great, generally feels great and is more and more his old self everyday.

For example, this morning we decided to go for a little walk/bike ride, something which we have been doing quite a bit the last week or so. Alex and Ellee ride in the double stroller and Max rides along side us on his bike. We decided to try out the Little Miami bike trail about 10 minutes from us and found that it was perfect. It was mostly shady and cool since we went in the morning and Max lasted for almost 40 minutes, riding along and enjoying being outside. Once we finished there, the boys noticed the little putt-putt golf course nearby so, we drove over to check it out. It too was perfect...shady and nobody there! So, we played a round of putt-putt as well! It was a really fun morning. Thankfully, we are finding more and more creative ways to get out for a bit, like this. What made this morning even more enjoyable was the fact that school started today for the kids around here. At least one good part of this for Max is not having to head back to school yet! He still gets to have a little bit of summer fun...although nothing like a real summer.

We got to go and meet our new little family member last Saturday, which was really fun and exciting! The boys are now calling him "Spud", short for Spud Webb, one of their favorite basketball players (may have something to do with his height :) ). I think it may stick so, we may have a dog named "Spud" arriving here in about two and a half weeks. I am excited about it and the boys can hardly wait. They talk about him everyday and ask me questions about what he will do, where we can take him, etc. It will definitely add some excitement (and maybe a bit of work) around here!

We have another exciting event coming up that we are hoping all of you will support in one way or another. I have created a team called Max's Mighty Mob to walk in the Cincinnati Walks for Kids event on October 10, 2009 at Coney Island. The money raised for this walk supports Cincinnati Children's Hospital and specifically, I am asking that the money that our team raises be directed to the Hematology/Oncology unit at Children's and Dr. Davies. This is an awesome and fun way to give back a bit for everything that the doctors and nurses at the hospital have done for us...and it is nothing short of a miracle as those of you who have followed our journey know so well! So, if you would like to join us in walking on Oct. 10th, please follow this link to register: http://giving.cincinnatichildrens.org/netcommunity/maxsmightymobs If you can't make the walk but would like to contribute to the funds raised in honor of Max, you can follow the same link above and give a donation, under the "Support Our Team" area of the site. If you are going to join us at the walk, please send me a quick email too (kmmaemeyer@yahoo.com) because I am going to get t-shirts for everyone to wear also! I will keep updating everybody on our status for the walk through the blog also. Thanks for your support!

So, as you can see, things are good...life is good. We are settled into our new life at this point and making the best of it. We know we just have to remain patient and continue to give Max's little garden time to bloom. In the meantime, we are enjoying our time together and our much slower paced lifestyle. It is a bit of a weird spot, however, I must admit. While Max appears to be doing so well, if we were to be able to somehow view the inner workings of his circulatory system, we would find him to be in quite a rough state. He still cannot fight off most germs on his own and would require hospitalization to make it through a fight against just about anything bigger than a slight cold. If he were to catch the flu or some other viruses (like CMV, EBV, adeno to name a few...all fairly common), he would most likely not survive. Thus, while we are getting our old Maxer back more and more everyday, we are still in a terrifying spot. We just know that we have to continue to protect him as much as we possibly can from these icky germs until his immune system is back up to full par. As I've said before, that will hopefully be about one year post transplant, however he will still require re-immunization for all those really major germs after that point. Bottom line...we still have a long way to go.

Sometimes when I check on him at night, sleeping peacefully in his own bed, across the room from his little brother, I am struck by the magnitude of what he has been through...what we have all been through, in these past 8 months. I am just so thankful, just eternally grateful for the miracles that the doctors are able to perform today. We would all be in such a different place in our lives if our Maxer were not here. Please join us in giving back to the wonderful caregivers at Cincinnati Children's Hospital by supporting the walk on October 10th. Thanks!

More soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)

Day +140: Heading in the Right Direction & Trying to Beat the Boredom!

Today is day +140 and, like most days lately, we are having an uneventful day. We are definitely in another transition period. Max finished up his summer tutoring Monday and probably will not begin his home schooling for the year for a few weeks yet. Without tutoring on Mondays, Wednesdays and usually one other time a week, things are pretty quiet around here.

Our visit down to the Day Hospital last Friday was filled was great news. Dr. Davies was there and we had not been able to see her for about three weeks so, we had lots to catch up on with her and many questions to ask her. Both Max and I were on cloud nine with her updates and responses. Essentially, she said that although Max still has quite a way to go in re-building his immune system, he is doing well at this point. His labs that are taken weekly to measure the level of several viruses in his body (the Cytolomegalovirus (CMV) that we had been fighting for several weeks post transplant in particular), look great and as a result, we are going to be able to discontinue the infusion of the Cytogam medication that Max has been getting every other week to fight the CMV. This means that we are now down to once every other week visits to the hospital! Incredible news! In addition, we asked her about the possibility of attending the NBA All Star game on February 14th in Dallas, TX (Max's Wish) and she does not think that will be a problem! Finally, we have been considering taking the plunge back into dog ownership so, I asked Dr. Davies if it would be ok if we got a puppy...and she said it would be fine! So, we have been searching petfinder.com ever since and have found a little guy that we are planning to adopt on September 9th! He is a border collie/australian shepherd mix and is currently only a month and 4 days old. He was taken to the shelter with 10 brothers and sisters and his mom on the day he was born and, thankfully, this organization called Rescue Our Shelter Animals, swooped in and took them all in to a foster home so that they would make it. A typical shelter can’t handle that many puppies so, they likely would not have made it. We are beyond excited to add a new member to our family and are anxiously anticipating being able to bring him home at 8 weeks old! I know that it will be a lot of work for me, in particular but, I also know how much joy he is going to bring to the kids and to all of us. Max has been asking for a dog for some time now but, with everything going on, we were definitely not ready. However, I can’t think of a better time to do this than now. We still miss our Curbie who we sadly had to put down two weeks after Ellee was born because of lymphoma but, I think we are now ready to take on dog ownership again. The fact that we are home here 99% of the time will be a huge help in getting him trained and I am excited that he will keep the kids getting up and out for walks, etc as the weather starts to turn yuckier this fall and winter. Max and Alex can’t wait to teach him how to fetch and play Frisbee, etc. It’s going to be such a “pick me up” for all of us.

That is our big news for the week and there‘s lots of it! Some exciting things going on around here…and yet, we are struggling to find ways to beat the boredom more and more. As we get close to 8 months of isolation for Max, the same old, same old around here is starting to set in. Yesterday while I was taking a quick shower, the kids decided to cuddle up in our bed together, build a pillow fort and then try on Matt and I’s shoes (as you can see from the pictures). They are definitely getting creative all on their own! We have also tried to get creative in finding ways to get out a bit but, it is tough. We still have to be extremely careful about sun exposure for Max and, of course, germ exposure. Obviously, that is very limiting and makes it challenging to find things we can do. We have spent lots of time with Aunt Molly and Aunt Monica and the kid’s cousins at their houses which has been wonderful but, they will all be back in school as of next week so we won’t be able to do much of that, unfortunately. We are all going to miss seeing all of them so much. We have been taking some wooded hikes here and there and have gone to hit golf balls late in the afternoon when the sun isn’t so intense. We went fishing with Matt’s dad, Aunt Molly and cousins Andrew and Jacob last Thursday which was fun (see picture). We stayed in a shady area and it was a bit cooler so Max could take part as well. However, we do struggle with Max’s comfort level with getting out. When I finally come up with something we can do and we get there, Max lasts about 15 to 20 minutes and then he is typically ready to go home. I can’t blame him…when we are outside he has to wear his mask which can be hot and definitely awards him some strange glances from people. And, as a result of my paranoia, I think I have made him worried about the sun and germs. So, generally, he is just ready to go home and relax shortly after getting out somewhere. He just wants to be comfortable again. I’m just going to keep pushing him a little bit so that hopefully, before long, he will again be fine with getting out.

Alex and Ellee have been quite the opposite when we do venture out. They are obviously thrilled to be doing something and to be outside the walls of our house! I took all three of them to the park on Sunday evening with some ice cream after dinner because Matt had a meeting up at church and Alex and Ellee had a ball. They held hands and walked together down a little path and were singing and laughing. It made me realize how patient and wonderful the two of them have been through all of this too. Not once has any of them complained about the situation. They have all endured the isolation like champs. I know they are all relatively young and that, given their ages, it probably isn’t a surprise how well they have all done. I agree that their age is a factor that has definitely made things easier but, I’m here to tell you that it is not easy and not normal for a child to be kept from exploring the world and all it has to offer…at any age! I am so proud of my kids for handling this whole situation the way that they have and for supporting each other like they have. I know that it is going to have a long lasting effect on their relationships with each other and their passion for what the world does have to offer. I can’t wait for the day when we can get up in the morning and say, “what do you want to do today guys?”…and then go do it! Whatever it is, without hesitation or worry! I know that they will LOVE that new found freedom again and that we will all experience so much joy in just doing the “normal” things.

As the fall approaches and school starts around here again, we are working on pulling some plans together to keep everybody occupied. Max will be getting 5 hours of home schooling from the district but it has not been finalized yet so, we aren’t sure when that will be taking place. I am also setting up some guitar lessons for him and have taken a church friend up on an offer to come and work on art with him once or twice a month. I am hoping that all of these activities, along with the new puppy, will keep him somewhat busy and help him beat the boredom. Alex will be starting pre-school in about a month and will be there on Monday, Tuesday and Wednesday afternoons. He seems to be fine with returning although I think when it comes down to it, he will be a bit apprehensive and need to re-adjust for sure. It’s been a while again since he was there and we have spent LOTS of time together so, he will probably have a bit of separation anxiety to deal with again. All to be expected given this situation. I am sure that we will work through it and he will enjoy his time at school. I remain nervous about the idea of him being exposed to so many germs there but, I am going to take things as they come and deal with them as it happens…and try not to worry! I am hoping to get some special times lined up with Ellee each week as well. She has shown us that she loves socializing and is definitely missing it right now. I am going to try to take her to story time at our favorite book store in town or the library each week and let her get out a bit and see some other kids her age.

I have been told by several people lately that they find my blog to be inspirational. I am so flattered by this as it was not at all my intention when I began writing it. I just wanted to be able to get information about what was going on with Max to lots of loving people that wanted to know. However, the blog has become so much more to me as time has gone on. It is like a live journal for me…something that lets me reflect on our situation and pour out my thoughts so that I can capture them forever. It helps me to sort through everything that has been going on and to get the jumbled thoughts in my head down into something coherent and comprehensible. I read it back to myself several times - usually once or twice before I send it and then a few times in the days that follow. I think it really helps me to let it all sink in. Sometimes it is very hard to believe that this is our life these days, that this has really happened to Max and to our family. Like people say, you never think it will happen to you. In addition to all this, the blog has given us a gift that I know we will treasure forever. It has allowed us to document this entire experience and all the emotions and thoughts that have gone along with it. I look forward to days in the future when we will sit down and read through it together and share it with the kids friends, spouses and children. I know it will be an everlasting family treasure. Finally, when people tell me that they have been inspired by the blog, I am just elated. That is a complete gift - to know that people are being affected in a positive way by Max’s story. Going through all this has taught us things that I’m not sure we would ever have learned in any other way, at least not as quickly and profoundly. If I can translate those learnings to others without having them have to endure what Max has, that would be amazing. And if we can inspire just 10% of you to take action in some way as a result of Max’s story, we WILL save lives and make changes in the world. That is inspiring to me!

Thank you all for your continued support, thoughts, prayers and love. We look forward to the day when we can all celebrate life and this beautiful story of rebirth together.

More soon….

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

Day +132: Friends, Fun and Philanthropy

Today is day +132 or, as Max put it this morning, "+30 days since the day +100 party". Amazing how kids think. He had such a wonderful time at that day +100 party (even though it was on day +102) that he is now keeping his time based on that day. :) Cute. That sums Max up right now...he is living for the fun days and making the most of them! At the moment, he is enjoying a very fun day with his two cousins, Will and Ben and his two neighborhood buddies, Raad and Giana, along with his best buddy, his brother, Alex. They have been running around here, building forts, playing basement basketball, building Legos, playing Rock Band 2 and just generally having a ball. Max is so full of life and, suprisingly, energy! More than I have most of the time!

We have had another good week overall. Last Friday's visit to the Day Hospital was pretty uneventful. We did have a nice discussion with Dr. Joshi since Dr. Davies was not there and Max shared all of his pictures from the Reds game with her and our Nurse Practitioner, Paula. They both asked for some copies of them to put at their desks, along with one of Max with Alex and Ellee. They have treated our family so kindly and always make us feel special. We have some prints ready to take with us for them on Friday.

The major issue that we continue to watch with Max is his engraftment level. It has been fairly stable around 85 - 90% for the last few weeks and we are hoping and praying that it stays stable around that mark. We have also been working with our Nurse Practitioner and the doctors to keep the level of the immune suppression medication, Cyclosporine, in Max's blood at just the right point. Finding the right balance with this med has proven difficult. We want it to be at a place where it is preventing the original t-cells in Max's body (those that originally attacked his marrow) from doing it again while at the same time, not being too high that it will damage Ellee's marrow and hurt his engraftment. Thus, we are continually monitoring this level and had to make a quick trip down to the hospital again this morning to check it and make a minor adjustment to his dose as a result. Dr. Joshi told me last Friday that if his engraftment level does not begin to stablilize over a period of several weeks, the doctors will need to "regroup" to come up with a plan for Max. Made me a bit nervous, to say the least. Sometimes just when you start to settle in to things in the BMT world and get comfortable, your seat is pulled out from underneath you. Thus, we are praying for a stabilized engraftment percentage and no need for an action plan for Max.

On a positive note, we did discuss the schedule for hospital visits briefly with Dr. Joshi on Friday and the hope is that we will be able to go down to every other week visits at about the 5 months post-transplant mark (September 1st) and will revisit going down to once a month visits at the 6 months post-transplant mark. As you may remember, it is when we are down to once a month visits that we will think about removing Max's central line, something which we will all be extremely excited about! That will be another huge cause for celebration!

We had another full weekend of fun activities around here. A step-cousin of Matt's was married on Saturday night and Matt and I enjoyed another relaxing evening with the Meyer side of the family (that's where the suckers came from in the picture above). Sunday we celebrated cousin Andrew's 10th birthday with the Meyer's and the kids had a ball, as usual.

We are absolutely settling in to our "new normal" although there are parts of it that we hate and are anxious to have over. We have not seen my neice and the kid's cousin, Audrey (my sister's daughter) in over a month. She is 2 and, as all 2 year olds do, has picked up a few germs lately and had a rough couple of weeks with a stomach virus, fever and rash, etc. As a result of these germs, I asked the doctors about how they felt about us visiting with her at this point, once she is well. They recommended that we not see her until Max is 6 months post transplant, or possibly after October 1st. Obviously, that is difficult to hear and to imagine. My sister and I have been able to see each other and we are going to try to at least get Ellee and Audrey together to play outside when Audrey is well as they LOVE to play together. Thankfully, my sister understands our situation completely and knows that we just have to practice patience until we can all be together again like a "normal" family.

As a whole, we are all happy and enjoying life although, as I've shared many times, we all have our moments here and there. I had another one of my moments at the wedding this past weekend. The band was playing one of my favorite songs, "I Hope You Dance", which can be a tear jerker as a mom under normal circumstances. I was doing completely fine, enjoying the evening, when all of a sudden about half way through the song, I thought, "I hope Maxer dances...I hope I see him dancing at his wedding..." and I had to run out of the room and hide for a minute. I know that everyone would have understood "my moment" and that I could have cried in front of everyone but, I just don't want to do that. I want to KNOW that I will see him dance at his wedding and I don't want to let myself think any other way, especially considering how well he is doing at this point. That darn worry and insecurity always finds a way to sneak its way in...and I think it's good, in some ways. It makes sure that you don't take one minute for granted and that you appreciate the time you have with your loved ones...every second.

Many positives are coming out of this situation, too. Last night, my mom arranged for a group of us to go down to the Ronald McDonald house to bake goodies for the families staying there. Although in some ways it was a bit tough for me, emotionally, it was such a powerful feeling to know that, by participating, I was turning a difficult time in our lives into something positive for other people struggling through similar situations. I got to witness first hand the joy that a simple chocolate covered strawberry or a cupcake can bring to someone's day. I did run into a couple of families that I met while we were in the BMT unit and there are mixed stories. Some are doing well, others are not. It's a tough place to be, as I know, and I want to do everything I can to make it as easy as possible for these families to get through. As one of our friends from the BMT world recently put it, "A negative by-product of this experience has been coping with the deaths and serious health issues of children. Ignorance to this was nice. However, when we were ignorant to these issues, we were not doing anything to help. With this awareness, we are now in a position to do something to help." (Thanks, Rick and Lynne) I have seen SO MUCH need for help...it's overwhelming at times. I have a to do list that I am beginning to work on. At the top of it are registering to be a bone marrow donor and regularly donating blood, along with regularly volunteering as we did last night at the Ronald McDonald house and getting involved with the Champion's program at Children's which helps families to give back to the hospital...among other things. We know that many of you have already been moved to join us in these causes and we are honored. It is the most tangible way that we see the positive impact of Max's situation.

More to come soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)