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So Kevin takes Alex to the doctor - the first time he has done that since he was really little, and I think, the first time he has ever taken Alex without me along. The blood tests come back equivocal - immature cells in his blood.
With a normal kid, this usually means they've been sick, with him, it is a scary thing, because it could be a relapse of leukemia. The pathologist isn't experienced enough to know, so they have to send the blood work out for more analysis. That was on a Friday.
I don't think doctors really consider how hard it is to be told that your son "might" be in relapse, and then have to wait 4 days to hear the results, when you know that it is an emergency if he is in relapse. We don't hear anything until TUESDAY (a week ago). He has "reactive" cells, we are told. I've spent the weekend reading, so I know what that means. Usually a sign of illness. But Alex hasn't been sick. We learned some good things though.
When the test results came in the first time, we started planning. We knew it COULD be a relapse, and if it were, it would mean one of us would have to take Alex to Denver, and they'd be gone a long time. If he relapses, he'll most likely have to have a bone marrow transplant - read up on it if you doubt the seriousness, or the risks. We started planning. Just in case.
Kevin would have to go. I am necessary to the business right now. The business is necessary to our family's survival. That was the only choice we could make. But it isn't an easy one for a mom who has been the one there for her son through all the yuck before. We now know we are prepared for that, if it should come. We worked out who would do what, how we'd get by. I hope it doesn't happen. But if it does, we'll survive.
We also learned that if it HAD been a relapse, 4 days would have been way too long. Every day counts. So we'll be taking his tests to another lab from now on.
There is something wrong with him, no doubt. I'm watching him lose ground again, and it isn't easy to deal with. He is stick-thin again, losing muscle strength very slowly, and he has dark circles under his eyes. He lost three pounds between his last appointments. Not good in a kid as small as he is (he just turned 11, and is hovering somewhere around the 40th percentile - small for one of my kids). But we just have to wait to see what it is. I keep hoping it will just go away. But it probably won't. We've been here before.
It could still be a relapse, but it is more likely the return of whatever it was that he had before he was diagnosed with cancer. He had failure to thrive before he was diagnosed with leukemia - LONG before - we are talking YEARS (it was slow and subtle though, so the doctors would not listen to me until he started to gain after starting chemo). Something unrelated to the cancer, but oddly, the chemo treated it also. There are some autoimmune diseases, and a few others (Crohn's Disease is one) that can cause failure to thrive, and that are treated with chemo drugs.
I hate the wait, and I hate trying to convince the doctors that there really is something wrong with him when I KNOW there is, but they are considering him according to averages, and not according to HIM. The weight loss is now dramatic enough that they are finally listening though. He goes back in on Thursday for a follow up CBC and checkup. We'll see what happens then.
Laura
Mom to Eight
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