Seven Months

I had an epiphany last night; it's the 19th! Seven months since the day that our lives were turned upside down. And for once on this monthly anniversary, I am so very happy with Nathan's progress. We are home and together and got through a wonderful holiday season without any issues or admissions to the hospital. He has blood and platelets and white cells, not a ton, but lots and the cells are growing. He's not fighting any active viruses or infections and, despite having been severely neutropenic (i.e. susceptible to infection) for four straight months, he made it through and is gaining strength and energy every single day. He's eating and drinking and keeping it all down and not having any major GI issues. He currently has "angry" kidneys but this problem is well controlled with 24 hour IV fluids. Most importantly, he is himself again; that playful, fun, chatty and silly little five year old boy that he was before this all began (ignore the fact that he was four at the time). In the grand scheme of things, he is doing very very well. I am amazed at his turnaround because this all started with him having a remarkably unusual presentation of a very rare form of a very rare disease. Approximately 900 people are diagnosed with Aplastic Anemia per year, about 45 of which have the form that Nathan had (hepatitis associated aplastic anemia) and he literally wrote his own book given the unprecedented way it all began. He was admitted to the hospital with a increasingly sick liver and a platelet count of ten, requiring near daily platelet transfusions, and bone marrow that could no longer produce enough of the blood that he needed to live... a problem that was only getting worse by the day before his marrow completely shut down. He made some brilliant doctors scratch their heads for two months before they could give us a concrete diagnosis and we truly still do not know what triggered this vicious auto immune attack on his body. But his liver is all better. He is making his own platelets, white cells and red cells and he is finally no longer dependent on blood transfusions to sustain him. I cannot say enough how much joy that brings to my heart... that we made it through some of the worst times and are coming out the other side stronger and profoundly thankful for this gift of life. Here are his counts 119 days post transplant and 63 days post that much needed "boost" of bone marrow from his very generous sister, as usual with the normal ranges in parenthesis:
White blood: 3.2 (4.0 - 12.0)
Absolute neutrophil count: 1,700 (1,400 - 6,600)
Red blood: 2.99 (4.0 -5.3)Hemoglobin: 10 (11.5 - 14.5)
Reticulocyte%: 2.7 (0.5 - 1.1 - high is good in this case, his body is cranking out red cells at a record pace and he was even higher a couple weeks ago)
Absolute retic ~80
Platelets: 297 (150 - 450)
^^^ did you see that? Holy platelets batman! 

Now that we are home after living at or near the hospital for so many months, I find myself more emotional and more anxious about everything. I think the fact that we were getting daily lab results for such a long time caused me to have an irrational attachment to that sort of constant feedback. But I think the bigger factor is the reality check that I had especially during our three months stay at the hospital. Being in the hospital for as long as we have, seeing all the other children fighting their battles, it caused me to really look at Nathan and focus on each day and each moment so intensely. To look at him and see that, no matter what he was fighting, he still had that sparkle in his eyes, that smile on his face, and there was never a moment when the situation became immediately critical... many many children could not say the same thing. And also, sadly, to learn of yet another child who lost his or her battle, it was truly heart breaking. I couldn't mope or focus on the bad stuff, I was far better off looking at the sweet boy in front of me and just being his mommy. Even now, my heart is broken to learn of a third teenaged boy in two months who lost his battle. Three boys who were in the hospital at some point with Nathan; their names are Jake, Nick and Tanner. Three families who I got to know even if just casually while getting coffee or preparing a third breakfast for our boys on steroids. One mother who cried tears of joy with me the morning when Nathan began to engraft and his counts began to come in, but now her boy is gone. Three times I was brought to "ugly" tears upon hearing this tragic news. Three families who are forever left to continue on with their lives with a piece of their hearts forever vacant. That's just a hole that cannot ever be filled. And, while these families touched my heart particularly deeply, unfortunately there are too many more just like them. Now I know many people reading this might feel overwhelmed or want to look away but this is happening, children are suffering, families are losing children to disease at an alarming rate, and many more new families hear the news of a critical and life threatening diagnosis every single day. It's heartbreaking but it IS. I was completely unaware of this stark reality before our family became one of "those families" and I sincerely hope that our story can at least spread a bit of awareness and maybe even inspire others to open their eyes and their hearts to the far too many children who are fighting these huge battles. So what can you do? Truly, every little bit helps tremendously. Give blood at a local blood bank  Join the bone marrow registry at Be The Match; trust me it's easy to join and, if you happen to get called to donate, remind yourself that a seven year old id it and so can you! Give to organizations who are specifically fighting to create new treatments for children because the funding is seriously lacking here. Give time and energy to organizations who support these families; amazing organizations like Make-A-Wish and The Ronald McDonald House Charities among many many others that I will be sure to point out as time goes on. But most of all, open your eyes and your hearts... don't look away. These children deserve your attention. 

So what are we up to now? Mostly we are laying low and enjoying some much needed family time together and attempting to live as normal a life as we can. We don't get out much for fear of the flu which seems rampant right now. We hope that Nathan's kidneys will calm down over time so he can get off fluids and have his picc line removed by summer. I am still not sure how realistic this is but it's a goal. No matter what, we want to make this year, and every year after, special and meaningful and magical and wonderful for my two amazing children. Life is truly a miracle!