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)