So Many Experts, So Few Explanations

We’ve seen quite a few doctors over the last week to address Jack’s recent paralysis incident and an increase in headaches that don’t want to go away. Two pediatrician visits, one neurology visit, and lots of phone calls have occured. We have one more appointment Friday with the eye doctor just to make sure things are okay.

None of the doctors had answers for us. No one knows what caused the paralysis and the headaches seem to be tension headaches. Everything looks benign and so we will do nothing for now and hope it goes away (and the paralysis incident doesn’t recur). Perhaps being out of school will help.

Jack’s pediatrician has been great during all of this. He is really good at following up on what is going on with Jack even when we don’t reach out to him directly (usually we call the oncology clinic because we tend to assume whatever is happening is probably due to chemo). He took me aside after the appointment yesterday to talk with me privately, away from Jack. He wanted to know how I was doing and let me know that that we could come to him anytime – that he would figure out what is going on so that we don’t have to. He even went so far as to say he’d noticed that the oncology clinic seems to feel that I’m a worry wart since the things I report that are happening seem to differ from what his dad’s household reports. He doesn’t seem to share this opinion with them, and understands that kids are unreliable when reporting illness – and this is especially true with Jack.

To give an example, if I reported to the docs that “Jack was feeling weak” – it would be because Jack told me that he felt like a chicken filled with whipped cream instead of bones. Jack’s dad would usually not think anything of that kind of statement coming from Jack, other than that Jack is a bit goofy and unique in the way he describes himself. If Jack reports that he got a weird shivery feeling (but he doesn’t feel cold) – I would check his temperature (more often than not he’d have a temp, even if it was slight, or it would be an early sign he was coming down with a cold). Jack’s dad would just assume he was chilly.

I don’t know if this occurs because Jack spends more time with me or just that he tells me more about his feelings or maybe I am some kind of master decipherer! But unfortunately the differences in what is reported between households has the oncologist questioning ME instead of his dad. And I guess maybe they prefer to hear that Jack is doing fine on chemo.

This is partly why David is taking Jack to more appointments these days – to show that it’s not just me (and also to spare me the stress of dealing with these jerks). But it seems that a lot of the damage has been done in the oncology office’s eyes, so we just deal.

In any case, the talk with the pediatrician yesterday was both reassuring (that we have SOMEONE who understands what is going on and who will take the lead on monitoring Jack’s care from a holistic perspective) and frustrating. It’s pretty upsetting to feel that I am not being respected by my son’s oncologist, someone I have to rely on to cure and keep my son alive, and it seems the pregnancy hormones have me a bit more sensitive when it comes to feeling judged negatively as a parent. I’m having a hard time shaking it now that I’ve been reminded.

David and I avoided asking Jack how he was feeling this morning and just sent him off to school, fingers crossed that he would last the day. And it seems he has. There are only 7 more days of school left until summer break, so hopefully we can make it through and we will all get a break from the grind.

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Comments

  1. I am happy for all of you that you have a good pediatrician. And sorry that things are so lousy with the oncologist. 7 days to freedom!

  2. i definitely think kids save up when they are sick or in pain and tell mom (and no one else). maybe because moms represent the healer figure in their lives I don’ know. whenever my kid gets hurt or feels sick he wants mom (even if dad is standing literally right there). he holds it together as a tough guy at school but once he sees mom he falls apart, I think I did that (maybe still do that). something about moms. I’m glad your pediatrician is so empathetic sorry the oncologist isn’t. it’s so nice when SOMEONE at least TRIES to understand and doesn’t negate you as a hypochondriac or paranoid parent. I always say follow your mommy instinct, if you really think something is wrong, it probably is. it’s a proven radar. it’s such a uphill battle but don’t stop fighting for Jack. You are doing an awesome job.

    • That’s the general consensus I’ve heard – that kids go to their moms with ailments first/more often. I don’t understand why that’s hard for this oncologist to understand, although I suspect she doesn’t have kids herself.

      Thank you, Cat. It means a lot to hear that, especially right now!

  3. Jennifer says:

    It’s great to hear your pediatrician has your back. But how frautrating that the oncologist office doesn’t. Moms always know best.

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