Discharged and Engrafted!

Yesterday, Nathan was discharged from the hospital. It also happens to be the day that they officially consider him to be engrafted by all possible definitions. We already knew that his white cells were 98.4% engrafted but now we also have had three straight days where his neutrophil count was above 500. It was very reassuring when we woke yesterday morning and he had the biggest jump in his white blood count thus far, it went from 1.1 to 1.4 and today it jumped again to 1.9. This is real progress. He has been taken off his white cell growth stimulant (G-CSF) for now but will still get it intermittently or as needed. Platelet and red cell engraftment is still a couple weeks in our future but seeing his white count really accelerate is a fantastic sign. We are now 37 days past his transplant and things are going great, still slow but great nonetheless.

However, being discharged from the hospital brought an emotional flood that I hadn't expected or maybe that I simply avoided thinking about. Nathan and I had been there since July 31st, that's 89 days inpatient. So much happened during that long hospital stay that our leaving kind of caused me to look back on it all before we can really turn the page. And turning that page forced me to face many things that I really didn't want to think about. He went through so much that it's nearly impossible to comprehend what this five year-old boy could endure yet still wake up with a smile and keep his spirits so positive through it all. At the time, I felt like my choice to stay with him (rather than switching off with Jay) was a bit of a selfish one but, as time went on, it became clear that having me go through it all with him and also have my life on hold made him feel so much less lonely and more  settled too. It was a lightbulb moment for me over these past few weeks and I am so thankful to have had the opportunity and the support which allowed me to really be there for him through every moment because it made such a huge difference in his ability to deal and cope with it all. And, I will admit, that it helped me tremendously also. Rather than being in my head and worrying about everything, I was always in the moment because I had no other choice. When his labs were getting worse and worse, I could look at him, at his smile, and know that all would be well. And both of our experiences kind of built off one another... my sense of peace helped him to stay positive, and his smile kept me sane. Living so fully in the moment gave me the opportunity to push the big picture of his diagnosis and treatment and all of his challenges aside which was a giant blessing but also a bit of a curse at the same time. I think I will be processing this experience for many years to come. So much sorrow and heartbreak, so much joy and hopeful moments, so many huge lessons that I will hold in my heart forever.

By far the most difficult part of leaving was the people. You build such strong connections during a long hospital stay. We met other families who were able to identify with our experience like nobody in our normal lives could. And those incredible nurses who are our new extended family. I refer to them as the family that nobody ever wants but for whom I am forever thankful. I don't think words could even express my feelings or how much their support meant to us all. They cared for Nathan with such love and attention and provided the sounding board that I sorely needed in my most difficult times. And there was that one nurse who Nathan really adored from the start, and who felt the same way about him. Those relationships meant the world to us both and got us through our long days in the hospital. It's so hard to say goodbye to people who have made such a huge impact on our lives... even when it's such a happy goodbye, even though we know that we will visit again many times in the future.

Now I am excited to start building our lives again. Being together as a family again while living at the Ronald McDonald House, spending some weekends at home and then slowly transitioning to being home full time over the next month or two. Then maybe even putting this whole ordeal completely behind us in another year. I know we will have our challenges and hiccups; the kids actually just had their first real fight since being out of the hospital and I know there are many more to come. Heightened emotions tends to result in sub-optimal behavior in children and even adults too. I get that, but it certainly doesn't make it any easier for this stressed out and very tired mommy. I'd love to pretend that we have this perfect idealized life where nobody ever says an unkind word but that's just unrealistic. We do, however, have a very thankful life and a huge dose of perspective to guide our futures together.

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.

The Little Things

Sometimes the little tiny things hit me hard when I least expect it... even more than the really big things that I can just kind of hunker down and deal with as it comes.

Nathan was looking at photos and videos on an old iPhone that he uses. I kind of lost it when he started to play a video of him and Camryn playing in his room. It was the sort of random silly stuff that little kids take photos or videos of but that's what hit me. This is how life was; none of the heavy stuff we are dealing with right now and they were both so much more unencumbered by the harsh realities of our current situation.

Or when I glance at a picture of how he used to look, before steroids made his face and body "puffy" and when the twinkle in his eye shone just that much brighter. Or seeing him traverse a creek by walking on a fragile log, or happily scale a fallen tree that was so high that it was out of my reach. I realize I have somehow gotten used to this current version of Nathan and all of the limitations on him, and that's truly ok as living in this moment is all I can do, but it doesn't mean I never wish to go back to the way things were... it's more that I cannot truly long for those days for fear that the longing would hurt too deeply right now. And the reminder that we will never be "that" family again is just overwhelming as I don't yet know in what ways we have change although I know those changes are tremendous and sometimes painful to even begin to consider.

How about the day I noticed his hair falling out? Why does such an expected and inconsequential thing hit me right where it hurts? I know it's just an external sign of what he is going through but I think that's just it! It forces me to really see and realize his illness in a very obvious way. As cute as he is bald, and as much as I adore him this way, it's the circumstances that lead to this point that kind of slapped me in the face as I saw my sweet little boy pull out increasing strands of hair as the day went on.

There was a time when a simple blood draw was a big deal, when the idea of even one blood transfusion was unfathomable, when even a short hospital stay seemed daunting, when a virus was good for the immune system, when prescription medications and chemotherapy weren't even on my radar, when when when... I can go on and on and on but suffice it to say those times are in our past and replaced with a new appreciation for the simple things in life and the people who make every day that much more special.  There is such a huge gulf between "then" and "now" that I just cannot reconcile the two and even just to try feels futile. Hindsight is not my friend right now, I need to focus more on foresight for the time being.