We Just Don’t Know

Here’s what’s going on in our medical mystery world right now. (Note: I wish I had the brain power to write this more better but I just don’t. I won’t be able to decide if any of this even makes sense. If you know an oncologist or neurologist or some other amazing person who can decipher medical crap, please feel free to seek their opinion on my behalf. Because I’m losing my mind.)

Yesterday Jack woke up with thigh & pelvic pain and complained that his legs were feeling “floppy.” (The best guess as to what “floppy” means is weakness. When his legs are tested, he definitely has strength but no endurance.) He couldn’t walk…for hours. I carried him everywhere. He sat on the floor while brushing his teeth and crawled to the living room if I wasn’t right there to pick him up.

He also complained, at various times, that his back hurt and his sides (kidney area) hurt and his chest hurt. He’s on ranitidine for heartburn and we give him tums, too. His kidney function tests look pretty good. He’s going to the bathroom normally…

The pain and floppiness comes and goes and doesn’t seem to be related to anything. It does seem to be more prominent on the weekdays, which could be because he’s taxed more by school but who knows. I mean, on the weekends he doesn’t have to get up at 7am and has a lot more time to laze about.

New symptoms crop up every now and then. The other day he trailed off mid-sentence when answering a question. Maybe he was just tired? Maybe not? He has pains in his joints sometimes, which is not uncommon with his meds anyway. He had a period yesterday where he felt cold sensations on his body (trunk area), as well.

So far the docs have lowered Jack’s Diamox dose to help with the acidosis and the floppiness. It hasn’t helped yet (after two and a half weeks at the lower dose).

Yesterday the docs said, what the hell, let’s try to give him sodium bicarbonate and see if that relieves his symptoms! Even though the acidosis is mild and most kids at that level don’t have any issues, maybe Jack is just more sensitive to it.

I’ve talked to all his doctors and the nurse case manager multiple times on an almost-daily basis. They don’t know what’s going on. We keep hearing suggestions that this is related to school avoidance. While that is possible, it’s really hard to buy when the kid is yowling in pain and refusing to walk for hours. And when he berates himself and hits himself in the head because it’s another day of him missing school?

I just don’t know. It doesn’t seem to fit.

Sure, he doesn’t like school very much and he doesn’t look forward to going. He thinks the subject matter is boring. But he has friends and loves his teacher and being at home is pretty freaking boring.

So everyone is scratching their heads. If it’s not a psychological issue, then other (also unlikely) possible explanations are:

  • Jack is more aware of what is going on with his body than your average kid, so is more sensitive to (and vocal about) the affects of even mild acidosis.
  • Jack has a neurological issue going on.
  • Something is going on with the cancer and they just can’t see it for some reason.

The sensitivity to acidosis is likely at least part of what is going on, but we’re not sure that it explains everything, particularly when the symptoms are getting worse but the numbers are pretty steady. The bicarb he started last night should answer that question one way or the other.

A neurological issue…would it come and go? I have no clue. He’s been examined by a neurologist for neuropathy and she said he shows very few signs of nerve damage – nothing that would suggest he would be unable to walk sometimes.

And then there’s cancer, which is what comes to mind first since that’s what he’s fighting anyway. The oncologists say that it would be VERY unlikely for relapse to happen while still in treatment. But, it does happen…rarely. Jack’s labs haven’t shown anything unusual, though. Cancer can hide in the spinal fluid…but Jack didn’t have it in his spinal fluid when he was diagnosed, so it would be super weird for it to appear there now.

Not impossible, but very unlikely.

The reason why I’m keeping this possibility on the list and asking questions about it is because when Jack was first diagnosed with Leukemia the symptoms were a lot like this. In fact, he had a virus around Christmas and even once that cleared up, he had weird issues. Pains that moved. Symptoms that came and went and were in different parts of his body at any given time. One minute he would be in pain on the couch and the next he’d be completely normal.

We worried he was trying to get out of school. Alas, he wasn’t! And thank goodness we had him checked out!

But he had a (slight) fever then. And he doesn’t now.

Anyway, he goes in on the 25th to receive chemo in the spine, so they can check the spinal fluid out then to be sure he’s cancer-free. Fingers crossed!

I just want him to feel good and be able to go to school. I want to not wonder what the next day is going to be like. I don’t want to worry about some sinister thing lurking around the corner to hit us in the head.

3 thoughts on “We Just Don’t Know”

  1. I am sorry that things are in such confusion with Jack. Much to sort out and no one seems to be able to give you a definite answer.
    I have published and presented nationally on the topic of school avoidance. If those working directly with Jack continue to consider this psychological issue a possibility, please contact me. I would be happy to offer whatever expertise I can bring to the conversation.

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