The Plain Jane Diaries

Greetings! I know it's been a while since our last update. We are essentially on house arrest since N cannot go out into public yet. What does this mean? I'm stuck to him like white on rice with nowhere but the next room to roam to. We do have a nanny that comes for several hours a day, so having her here has allowed me the freedom to step out and catch my breath and run errands as needed. Her being here has probably been my sanity saver! In general, I will say that N has been doing very well. We got confirmation this week that his cells are 100 percent W's at this point. Only his T-cells are 97 percent W's, and we will check progress on that in another month. The team is very happy with how his body is taking the new bone marrow. Little brother did not miss a beat. He was back to normal, roaring and pounding his chest half naked just 4 days after transplant (because that's apparently what the Hulk does). The only evidence of transplant for him are 2 little heroic...

We are day +23 today and going strong! N has only had some issues with chest pains since coming home, which doctors have so far attributed to bad reflux. They explained that though he looks great and has been doing great, transplant nonetheless requires a significant amount of healing. So he may be sensitive to any change in diet from what he was accustomed to in the hospital for the weeks we were in there. I was pretty nervous leaving the hospital, armed with a tight schedule of about a dozen pills I need to give him daily. I double, triple check every bottle and every pill before his doses, I scan his body for any changes, I take his temperature if I think he MIGHT look a little different, and most of the time I'm thinking about how to get him to eat. In N's mind, he is excited to eat foods that he used to enjoy, but at every meal, after one bite I can just see the disappointment sink in on his face. His palette just isn't quite right yet and meal after meal, he gets di...

We are going home today.....!! SURPRISE! Yesterday, the doctors came and saw us and because he has done so well, and because his numbers continue to rise (meaning his bone marrow is taking), and because N asks every day when he can go home, the doctor graciously told us to get out of here and spend the weekend at home. After the doctors left our room, N turned to me, smirked and said, "Well... guess that means I broke the record after all," with some smug satisfaction. He was trying to break the hospital record for shortest transplant stay. Goals. As we pack up and prepare to leave here, I am quite honestly left without words. We have heard nurses and doctors repeatedly say things like, "In my 17 years here, I've never seen anyone fly through transplant like this." And I hold back tears every. time. As N's knowledge of science and medicine deepens in the future, he will in retrospect see God's hand in all of this, and how much prayers sustained him...

It looks like his counts are now on the rise! We are waiting for his neutrophil count to reach 500 and steadily remain above that count before getting discharged. Once it stays above that count, the doctors said we can then look back at that first day he reached 500 and say that's the day his brother's cells fully grafted into his system. From that point on, I become a neurotic watchman over him until we reach day +100. After that, I am allowed to become a little ness neurotic for up to a year (because we all know how easy it is to become less neurotic about something). Based on how his numbers are patterning, the doctors have projected that we may be able to get out of these 4 white walls as early as MONDAY!! Freedom will never have tasted so sweet to my little boy. I am certain of that. Today is a special day for us because it is my middle buddy's birthday. We did celebrate as a family a full month early so that we could celebrate it together. Our middle child is funny ...

N has continued on his miraculous path of healing. He got a small mouth sore on the side of his cheek, but at this point into the transplant, I think we can take a sigh of relief. His blood count is still pretty obsolete, but we hope to see that going up fairly soon. This morning we found that his platelet count is low, so we had to transfuse him this afternoon with some extra platelets. This was expected to happen at some point because his platelets are just about the last thing to kick in since he has no bone marrow at this point. His body reacted with some very itchy hives, but these are really minor things in the grand process. He's still doing well, and I can still hear the nurses whispering after we round the corner that they can't believe he is looking like THAT this far into transplant. We are a little less than halfway through our stay at the hospital I believe. I can feel myself hitting a wall though because physically, emotionally, and mentally--- I will not lie---...