Wednesday, November 4, 2009


Post transplant day 7 (T+7)
The doctors say that Ethan is doing very well, especially in comparison with other BMT kids. 
Not having the same basis for comparison, I’ll say that Ethan is doing okay.   He’s certainly hanging tough, but he’s not as happy a camper as he was last week.
Through the last week and over the coming week, Ethan is at the weakest point of the transplant process.  He’s still feeling the effects of the chemo and radiation therapy, and his body can’t start healing until the new cells engraft and he starts producing white cells again.
Ethan is still eating, though very sporadically.  He may have 4 ounces of formula or a couple nibbles of this or that every 12-24 hours.  One or two days he’s gone all day without eating or thrown up what he’s eaten.  Even this very minor intake is a good thing, its indicative that he hasn’t started developing mouth sores and that the preparatory regime hasn’t completely made him loose his appetite or taste for food. 
Everyday that he keeps eating is one more day that we don’t have to start him on IV nutrition.  The doctors are prepared to do that, in fact, expect to have to do that.  But once they do, then it will be an eventual process to get him off of it and to get his stomach restarted.
At the other end, his diaper rash is, again, better than most. The nurse described it as a 3 out of 10, where 1 is a normal butt and 10 is a worst case scenario.  3 is good, I guess, but don’t ask Ethan to agree with you.  His butt is definitely a big source of displeasure right now!  The skin is red and sore and peeling. He’s constantly picking at his diaper.  Diaper changes are often followed by 20-40 minutes of discomfort. 
In addition, Ethan’s membranes are breaking down from the preparatory treatment, everything from his mouth to his GI tract.  I think it hurts him to have a bowel movement and then when the urine or stool contact his butt it hurts more.  Then when we change him, it hurts even more.
Throughout the normal regime of IV and oral medications, whole blood and platlet transfusions, we’ve also been trying to tweek the medications that handle the reactions.  Three days or so ago, Ethan was doing pretty well, so they changed the schedule for his anti-emetic (anti-throwup) drug from scheduled to as needed.  Then Ethan stopped eating and started throwing up, so we put it back on the schedule.
The next day, has been the greatest pain day so far, and it took us the better part of 36 hours to get him on morphene.  Started with a low level baseline; then increased the dose to get ahead of the pain so his body could recoup; then lowered the dose so he wasn’t sleeping too much.
Finally, after 72 hours or so of all that, I think we’ve got his nausea and pain under control.  He ate 3 ounces of formula this morning and seemed to keep it down.  He’s sleeping more but not asleep an excessive amount all things considered.
Late yesterday afternoon, I finished telecommuting and went back to Ethan’s room to relieve Grandma Lilianne so she could go home.  2 minutes after I sat down with him he peed on me.  Half an hour later, not a minute after I took the lid off Ethan’s hospital dinner (a pizza that Ethan said I could eat for him), he threw up on the food.  30 minutes after that he pooped through his diaper and we both got crapped up during the change!  
None of that was serious and Ethan recovered alright.  I was able to get changed, but Ethan was very clingy yesterday evening.   I was hoping he’d go to sleep for a few minutes so I could get to the family kitchen down the hall and heat up some dinner from home.  He wasn’t sleeping deeply enough for me to put him down.  And wanted to be held all the time.   I finally had to ask one of the nice nursing assistants to heat up my dinner. After a few hours I was able to escape for a minute to go to the bathroom.
Also this week, we’ve been continuing our conversations with the doctors about how to effectively communicate.  It’s clear that the doctors have a wealth of experience and knowledge. But Sarah and I have felt that the printed materials are too general and the doctors aren’t giving as much information as we’d like about what’s next with Ethan.  When Ethan went on pain meds, the doctors said that most transplant kids go on a few days earlier at higher doses.  I think we both felt that if we’d known that was expected, we could have gotten in front of his pain earilier—which is not to say we would have had him medicated unnecessarily—but simply that when it came we would have known that it likely wouldn’t go away without help. Same type of thing with his diaper rash.
So we’re trying to have more detailed and frank conversations with the doctors and asking specifically for a forecast for Ethan: based on his individual condition what do you expect next.
Ethan’s doing well, but he’s far from out of the woods. Over the next week to week and and a half we’ll be looking for signs of graft versus host disease, which is where the donor’s cells attack the recipient as the foreign body.  All transplant patients get GVHD to some degree.  GVHD can be life threatening. There are various severities and some symptoms that can be controlled by medication. 
We’re also hoping to see some evidence that the new cells are engrafting.  We’ll see that through his white blood cell count. The earliest we expect to see that is T+11.  (Interestingly though, the red blood cells that Ethan got last week were AB+, his old blood type.  Today’s transfusion was O-, his donor’s blood type and his new blood type.)
We keep hearing that Ethan is doing very well compared to other kids. I do think a large part of that is due to this new clinical trial that Ethan’s on, the toxicity seems much, much less than is typical. For myself, I keep thinking about all of the brilliant doctors that have worked with bone marrow transplants over the years, and I think quite a lot about all of the families that have gone through this before us.  (Bone marrow transplants for Hurler’s patients only started in the 1980s.)
Ethan is doing well so far because he’s tough and because of those wonderful doctors and those even tougher families that came before us.  We owe an enormous debt to all of them.
Thanks for checking in.

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