Tuesday, October 27, 2009


It’s not what I expected.  And that’s a good thing. 
I expected chemotherapy to be rougher--had mentally prepared to watch Ethan go through a week of vomiting, crying, low energy bed riddenism.  I guess I had expected a really bad case of the flu, or pneumonia, or something else.
Ethan’s through his chemo now, it ended yesterday.  He’s doing exceptionally well considering what they’re--we’re—doing to him.  His energy and mood have been very good.  He’s been able to get down to the playroom here at least once a day.  He’s generally been his normal happy self and its not what I expected.  But that’s a very good thing.  Today, he’s got his radiation treatment, and I’m hoping he comes through that as well as he’s handled the chemo.
Medically, he seems to be where the doctor’s want him to be. His white blood cell count is down from 7.7 at admission to 1.1 yesterday.  His neutrofils are 924, down from 1600 at admission.  Both of those will likely be even lower today. Meanwhile his hemoglobin and platelet counts are low, but not so low that they’ve needed to do a transfusion yet. And his kidney and liver function are both holding up well.
Physically and emotionally he’s doing well.  On Sunday, he threw up a couple of times, but the doctors have up’ed his anti-vomiting meds and so he’s been okay there.   Also Sunday, he had a horrific case of diaper rash, but we got it under control before the rash broke the skin, so he’s doing okay there too. He’s still pretty much a happy guy.  But he doesn’t have quite as much energy and he gets tired a little more quickly. Yesterday, he didn’t eat anything, and only drank a couple of ounces of juice, but this morning his appetite was back and he ate a good breakfast.
When I look back on this part of his treatment, there are two things that I think I’ll remember most: his IV pole and changing diapers.  After weekly 6 hour enzyme infusions, I thought I was pretty used to seeing, working with and navigating an IV pole, with a bag of fluid, the infusion pump and it’s associated line.   When Ethan was inpatient for his infection, we added a syringe pump to the IV pole.  Now with chemo, his IV pole has two masts.  On one mast is an IV pump with channels for three different medications feeding that line.  On the other mast are two syringe pumps, that push medication either into the first IV line or into his second port.  Ethan never has all 5 possible lines going at once, but he is now hooked up to something—either medication or fluid replacement, 24/7.
Likewise, the familiar act of changing a diaper has become a more complicated and more regular routine.  The chemo drugs work through his system really quickly, not to mention the constant stream of IV fluids going through, and the drugs make his urine and stool toxic as well.  The toxicity of the chemo drugs cause diaper rash.  Diaper rash can lead to infection, and any kind of infection is bad.  We’re changing his diapers at least every hour and a half, but more typically every hour, when he’s awake.  Changing diapers involves gloving up, washing with water, wiping with soft gauze, powdering and then slathering him up with this orange paste.  Kids are resilient and adaptable and Ethan’s learning the routine and is getting pretty good at keeping his legs stuck in the air for a period of time.  But when he’s feeling less cooperative, it quickly becomes a two person job.
He’s doing so well that I am constantly hoping that this whole thing will continue to go this smoothly, but at the same time trying to prepare myself for the other shoe to fall.
Looking at it objectively, breaking it down, there are three or four parts to this, the chemotherapy, radiation, transplant and medium term recovery.  Ethan’s come through one-quarter of this, and he’s doing great. However, as of today, his white blood cell counts and his ability to fight infection are at their weakest and will remain this way for something like a week or two while the bone marrow engrafts.  Added to that, there are potentially critical and long-term complications from the transplant itself.  I have to admit that Ethan is through one part of this.  It’s fantastic that he’s come through in good shape and going into the rest strong and with some reserves.
This afternoon, at 2 or 230, he goes over for the radiation treatment.  For those that are interested in the medical process, Ethan will receive 2 greys of radiation over his whole body.  By comparison, cancer patients may receive 60-70 greys, though that would be localized to the area of the cancer. Ethan’s radiation treatment will also be a much lower dose than full body treatments for leukemia patients.
Part of me thinks that it is nice to have that comparative basis for understanding Ethan’s treatments.  But the reality is that none of the preceding paragraph tells us anything about how Ethan will respond and what we should expect.  I’m reminded of a show about steam trains that Caleb was watching this weekend.  The narrator was talking about the fact that steam train engineers who are in the cab between the boiler and the tender, looking out the right side of the train, can’t see what’s in front of the train when the train is turning to the right.   So we’re turning right, and can’t see what’s coming up, we certainly can’t stop the train.  All we can do is close our eyes and hope that the track is clear.
Tomorrow is transplant day.  After all of this buildup, transplant day is purported….
Sorry, I had to stop at that point.  Ethan woke up then, and anytime he sees that a computer is on, he wants to play with it….  So much for anything any of the rest of us might be doing.
During the break the doctors came in on rounds.  There are about 5 doctors and residents on the team, the hematology/oncology attending, the 2-3 fellows, a resident, plus one of the nurse practioners, whichever of our nurses who is on duty, the transplant coordinator and today, a nutritionist.  The room fills up pretty quickly.
The word from the doctors is that he’s doing well.  His white blood cell counts have bottomed out.  They’re going to increase his anti-nausea meds to counter any increased nausea brought about by the radiation.  They also said that his hemoglobin has dropped to the point where they’re going to schedule a blood transfusion this evening after his radiation treatment.  This isn’t uncommon at this stage, and I doubt it will be his last one.
Ethan’s bone marrow transplant is scheduled for 1030 tomorrow morning—adding the requisite 6 hours “hospital time” to any time estimate—means it will be at some point tomorrow. 
After all of the buildup, the transplant is reported to be exceedingly anticlimactic.  They will thaw and prepare the donor unit, and then bring the donor cells in an IV bag, hang it, and administer the cells through Ethan’s IV port.  The entire process will take about 30-45 minutes.
Sarah is coming up to join me tomorrow, so we’ll both be on hand for the transplant.    It will be nice for Sarah and I to be able to spend the day together with Ethan.  It will be boring to watch. But hopefully, it will also be a milestone, turning the corner on Ethan’s new chance.  Many BMT families continually mark the anniversary of their family member’s transplant as a second birthday.  I hope that we’ll be able to adopt that tradition as well.
Thanks and all the best.

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