Peter had his blood tested again last week, and his counts showed some recovery from the low point they hit right after his diabetic crisis. We were very surprised to see his platelets up to 40, when they were only 14 a few weeks earlier. I asked Dr. Goodell to do another test this morning to verify the platelet count, since Peter and I leave tomorrow for Dubai, and it's helpful to know where things stand. The results were interesting. Peter's white count dipped again (in just a week), red remained unchanged, and platelets were a whopping 43!
Dr. Goodell has reminded me more than once that with numbers this small, they have to drop quite a bit before you can say that they've really changed. The measurements just aren't that precise. Also, blood counts can bounce around a lot on their way down. We had already seen some of that, but never in the platelets. 14 in platelets is getting to the point where spontaneous bleeds can occur, but 43 is fairly safe.
Peter's red count and hemoglobin (the protein in red cells that carries iron and transports oxygen) are pretty low and that explains why he sometimes feels weak and shaky. He does get winded easily these days. Dr. Goodell says we might see some recovery in the red and hemoglobin in a month or two. Red cells have a lifespan of 100-120 days and what we're seeing now is still impacted by the severe untreated diabetes of a month ago.
White count can bounce a lot faster than red count and hemoglobin because white cells have a lifespan of 13-20 days. Last week we saw a nice recovery and now Peter's white count is the lowest we've seen. The infection-fighting component of his white blood cells is pretty low, so he's susceptible to infection. I'll have to keep his hands well sanitized on our trip.
Platelets can bounce a lot even from week to week, because their lifespan is only 8-10 days. We're seeing a very nice uptick now but it could just as easily drop again ... and then go back up ... and then heaven only knows.
The BIG news is that we have some new information that changes everything. Right after Peter's aplastic anemia was diagnosed, we went on a fishing expedition for older blood tests that could tell us how long Peter might have been living with his condition. This was important, because it could have given us an indication of the pace of his downward slide. Unfortunately, we couldn't find anything in his pediatrician's file. Peter was not a boy we wanted to poke unless it was absolutely necessary. And it wasn't necessary!
BUT: Back in April of 2008, Peter saw a pediatric gastroenterologist at Advocate Lutheran Children's Hospital, the same place where his hematologist and endocrinologist have their offices. He's had chronic poop problems, and I wanted to rule out celiac disease (gluten intolerance). I had totally forgotten that the GI doc had ordered a blood test.
Apparently those test results were never entered into the hospital's "system", so they were invisible to all of us ... UNTIL ... a med student working with Dr. Goodell found them at the bottom of Peter's paper file. Dr. Goodell couldn't wait to show them to me. Peter CLEARLY showed the signs of aplastic anemia three whole years ago! This means that he has been living with low counts for a long time with no apparent symptoms. Despite the bounces we've been seeing in the past 5 months, his decline has been slow and gradual. There is NO reason to think that it won't continue that way!
It's pretty obvious that the GI doc never looked at the results, because I should certainly have gotten a phone call telling me to see a hematologist. (In retrospect, that's actually a blessing, because Peter would have been getting a lot more blood tests during the 2.5 years when we didn't know about his condition.)
Suddenly the frame of reference is entirely different. I can't say that I have a dying kid anymore. What I have is a kid with a chronic condition who is NOT SICK! Dr. Goodell says there's a good chance Peter could hang in for a year, or two, or even three. He could also go into a steady decline at any point. But based on the data we have, we're not expecting that for a while.
PETER WILL UNDOUBTEDLY GO TO SPICE!
Ironically, our hospice nurse came with us to this morning's appointment so she could introduce herself to Dr. Goodell. Now we're putting hospice on hold for a while, though we'll still stay in touch so that we can re-initiate his case at any time.
Last weekend, the people from Make-a-Wish came to see us, and we started to plan a trip to California in May so that Peter could see all of his special relatives who live there. (That's my boy ... forget Disneyland, I want to see my cousins!) Now I think I'll put that on hold for just a little while, since we're going to Dubai now and we'll be going to SPICE in June. Dr. Goodell thinks we should do the Make-a-Wish trip fairly soon while Peter is still feeling well, so early fall seems like a good time.
Since Peter's hemoglobin is still very low, Dr. Goodell talked to me again about transfusions. Initially we had decided that we wouldn't start transfusions, because there's no end game. How could you ever decide to stop? It just seemed better to never start. But now Peter's platelets (which were our gravest concern) are back up to 43, higher than when his condition was diagnosed. His white count is low, but he is NOT SICK. Things aren't likely to go downhill quickly. So why not give him some red blood cells now and then to make him a little more perky? He's got time! Let's make it even better!
We were prepared to give him a transfusion today, so that he could be at his perkiest while we're in Dubai. Dr. Goodell talked to him about it, but Peter had been stuck three times already (once for CBC, once for cross-match, and once when they couldn't find a vein). Peter was adamant: NO MORE POKES! But we'll be visiting Goodell again in a month, and if Peter's hemoglobin is still very low, we'll try persuading him again. It did take a shot of Atavan to get his I.V. in when he went to the hospital for his diabetes ... but maybe if we bribe him he'll go for it. I'm already talking with him about it in bits and pieces so that he starts getting used to the idea.
As for the end-game, Dr. Goodell said he'd been thinking a lot about that. He said that in his experience, the kid is the one who tells him when it's time to stop transfusions. At some point, Peter is going to start being sick. He'll get infections, run fevers, bruise easily, get nosebleeds ... and we'll recognize that it's time to stop. That was a persuasive argument to me, and our hospice nurse agreed. This has always been about Peter living as as long as possible as a happy, healthy boy.
To everyone who's been praying, I just ask you to keep on doing what you're doing. Every extra month is a gift. The future may still be uncertain, but I'll take it exactly the way it is right now!
I already knew about these new developments, but found myself weeping as I read this anyway... Life is good. Asha says, "Awesome!"
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