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.

If A Kid Falls Over And No One Is There to Hear It

Jack and I both stayed home yesterday because we’re fighting off some sort of nasty cold. He is fairly better than I am so far, which is ironic considering his suppressed immune system. In between looking mopey and blah, he was eating NON-STOP – just like being on steroids except he hasn’t taken steroids for a week and even then he didn’t eat like he did yesterday. Nothing was satisfying him.

Early in the evening as I was picking up the living room and dining room areas in preparation for a visit from Make-A-Wish, I heard some muffled noises coming from Jack’s bedroom where he was drawing. I called out to ask what was going on but didn’t get a response. A few seconds later, I heard more muffled noise and I asked Jack to use his words because I couldn’t hear him, even as I started walking down the hall toward his bedroom.

When I got there, he was starting to sit up from where it looked like he’d been laying his head against the bean bag chair next to him. Upon seeing the panicked look in his eyes and hearing his heavy breathing, I asked if he was okay. He told me he’d fallen over and couldn’t move his body. His face had landed right in the folds of the bean bag chair and he had felt like he was suffocating. And again, he couldn’t move to get himself more air.

His forehead was sweaty but he didn’t have a fever. Nothing was hurting him, but his heart was pounding with fear.

I called the pediatric oncologist on-call, who asked a few questions about any pains he might be having. She suggested maybe he was dehydrated and said we should have him drink more water and keep an eye on him and his temperature.

The rest of the night he seemed fine, although I did go in and check to make sure he was still breathing before I went to bed for the night. I ran his regularly scheduled labs this morning and the results aren’t terrible – he has an ANC of 792, so he’s not neutropenic, and the rest of his results don’t indicate that he needs a transfusion or anything.

Just…weird and a bit worrisome. My kid was suddenly, temporarily paralyzed and it landed him in a situation where he couldn’t breathe. I can’t even wrap my head around that.