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.