Engrafting!?!

I haven't written in the past few weeks, really it has been a lot of ups and downs and stress and waiting. The good news is that Nathan is so strong. He has been very stable... no infections, blood pressure fluctuations, fevers, nothing. A small bout of rhino virus that he somehow was able to fight off despite not having any white cells at the time. It's incredible really. In the second week following the transplant, he became very very lethargic and stopped eating. This is likely due to the beginning of engraftment and also his rhino virus. Then on day 19 his white count went from 0 to .2 (200 cells) and his energy shot up. Since that day, it has been very slow going. up .1, down .1, holding steady, up a bit more, repeat repeat, repeat. Such is life and I'll take slow, steady improvements. However, my exclamation points in the title to this post very much echo our confusion. He is engrafting... but isn't officially engrafted yet. It is taking so much longer than anyone expected but, at the same time, he is engrafting! We learned the other day that his white cells are 98.4% female meaning that they are derived from his sister's stem cells. They cannot do an official chimerism test just yet, he doesn't have enough cells, but this little peek at the male/female makeup of his white blood cells gave us some relief. Yes, he is 33 days post transplant and still very transfusion dependent. He is getting platelets every other day, red blood every 1-2 weeks and his white count is still only 1.0 (that's 1,000 cells, normal is 4,000+). Baby steps. I can be patient, and I am trusting his body and her cells to do their work. I cannot look at him and think of anything other than his own inner strength and vitality. Through it all, he has trusted us completely and kept in such great spirits (well, most of the time). He takes his meds, listens to his doctors, wakes up every morning telling me how much he loves me and spends his days playing and smiling and laughing and evading my feeble attempts to get him to eat a good meal. This is the life of a very sick (yet also remarkably healthy) five year old little boy. Sure he should be riding his bike and climbing trees but there will be more of that in his future.

So what will the next several weeks bring? Assuming all goes as it has, we are moving out of our hospital room and back into our room at the Ronald McDonald House this coming week. This doesn't mean that he is all better, really he's very far from that. It's just that he is stable, all of his meds are oral now and he can remain on fluids and his anti fungal infusion outside of the hospital so we are basically taking up space here at this point. While he is thrilled at the prospect of getting out of the hospital, he is very attached to many of the nurses and doctors here and becomes sad when he talks of how he will miss them so I've promised that we can visit anytime. He still has a long road ahead of him though and will remain severely immunocompromised for another year or more. We will have daily clinic appointments until all three of his blood lines show signs of recovery. If this takes too long, he may get re-infused with some more of Camryn's frozen marrow. There are risks to this little "boost" but in general the risks are minor in his case and it can even be done in clinic. This helps me rest easy at night. As his clinic appointment space out a bit, then we will begin planning to actually go back home. We hope this won't take more than a month or two but, again, I cannot predict the future and I will stay wherever we need to be to ensure that he makes a full and complete recovery. In the meantime, I am just going to appreciate the present, slow and steady progress, my strong little boy, his generous and loving sister, and the hopes of a full recovery so our family can be together again in the not too distant future.