Needless to say, I get asked this question quite frequently. I realized today that it might be helpful to others if I sat down and typed up an overview of where Hunter was following transplant and how far he has come since that day.
How was Hunter feeling?
For a while, Hunter felt pretty lethargic and took naps occasionally. He was rather wiped out because of vomiting and diarrhea for a while. He didn't feel like doing much of anything. At some point he had a slight elevated body temperature (not high enough to be considered a fever) but that didn't last long. He has never had any pain at any point during the process (most children are on a morphine drip).
What's the big deal about mouth and throat sores?
Most BMT patients get mouth and throat sores. Some get an awful case (like our sweet friend Story) and some only get a few. But very very rarely there is a person who gets none. Hunter is one of those rare persons. He didn't have even one mouth or throat sore at any point. This is a wonderful miracle for so many reasons. For one thing, they are scary and painful. VERY painful. But also, having open bleeding sores all through one's digestive tract in addition to no immune system can be a recipe for disaster. The sores can make the patient significantly more at risk for infection when they were already at high risk to begin with. Why did Hunter not get the sores? It's hard to say. Maybe the religious use of his "urine" (Hunter claimed that the staff collected their own urine and made him slosh it in his mouth) mouth wash for prevention really worked. Or I'd like to think it was those 26 months that I nursed him and all of the raw carrot juice I fed him before he went back to the hospital for transplant. But the most obvious answer is prayer. So this has been a huge victory for him!
Is the bone marrow from Ronin working?
Looks like it! His neutrophil count started appearing on Friday and as of today are 360. They will need to be at 500 in order for him to come home (or Ronald McDonald house). But several other factors need to be in place as well. Like...
Is he eating?
No. But he has to start eating and drinking before he can be released as well. And he must start taking all of his many many medications orally. He's receiving nutrition via his Hickman line and he also gets fat which is why he is starting to gain some weight.
What are they doing in there?
Playing around on Skype, watching tv on Netflix, scaring the nurses with Toy Story aliens, building LEGO sets, reading the Wimpy Kid series, and just generally being goofy.
How is he feeling now?
The Captain says that his mornings are rough but he's not sleeping much as he has to go to the restroom a lot in the nights. Plus he stays up late to watch things like "Burn Notice' and then gets up early. He's wild at times... zipping all over the halls, hanging out at the nurses station for hours upon hours. So, for the most part he feels great!
Will he be home for Christmas/When will you all go to Ronald McDonald house?
No, there is very very little chance that he will be released before Christmas but we are working on figuring out a way to maybe all see him on that day. We have no idea when we'll go to Ronald McDonald house or even for sure if we will go there. But we are prepared to do whatever we have to do of course.
When can he see visitors?
We will start allowing important close friends and family members to visit him as soon as it's safe but he probably won't return to normal activities/playdates/outings/visitors until next spring.
How can we pray now?
Please keep praying that Hunter will suffer no secondary cancers, that he will not be left sterile as result of his treatments, that his thyroid was not damaged which could cause him to not grow, and that it is only Ronin's bone marrow left in his body and that all of the leukemia is gone and shall never return. Feel free to also start praying for peace in our household once Hunter returns home and for us to be able to build room in our attic for Hunter to use for quiet alone time.
And as always, thanks for all of the support, cards, prayers, tears, notes, comments, gifts, meals, hugs. We are tremendously blessed.