Waiting and Watching

Two weeks ago, Jack was admitted to the hospital with a fever of 102.7 – his first in about a year. Maintenance had been going so smoothly that it was quite the surprise.

Even more surprising – the hospital stay lasted a week, with only a brief five-hour hiatus in there when we thought the fever was gone for good. We were wrong!

Jack’s been fine. Aside from the fever, shivers and night sweats, and stubbornly low blood counts, he is healthy. He’s not pale or droopy or coughing or extra bruised. He is fairly asymptomatic, nothing ever showed up in the blood cultures they checked for a week straight, and yet he apparently has a nasty virus that doesn’t want to let go.

I’ve been worried, but not scared. I’ve asked all the right questions, even the ones I really didn’t want to even think about. I did what I should have twenty months ago when he was diagnosed – I’ve taken a leave of absence from work. I’ve been with Jack every single day and night for the last two weeks. I’ve somehow held my own during the night terrors. I don’t think I’ve shed a single tear.

I might not be human anymore.

Seriously, I feel like a machine. I’m administering antibiotics three times a day, medications that must be removed from the refrigerator an hour before the dose is given, so I have my alarm set for 5am, 6am, 1pm, 2 pm, 9pm, and 10pm. Despite my terrible history of being utterly unable to get out of bed even after a perfect night’s rest, I’ve found myself waking up five or ten minutes before my alarm goes off in the morning. It’s just not right.

So I guess I’m functioning well, even though I will tell you that I don’t necessarily believe that Jack is fine. I mean, he still has cancer so of course he’s not fine – not yet. But aside from the never-ending alarm bell ringing in the back of my mind that I’ve gotten used to by now, I still don’t trust that this blip is just like what other Leukemia patients go through. I know other kids get neutropenic and have fevers and other illnesses during treatment, usually much more often than this. I know this is ‘normal.’

But it’s not normal for Jack.

His doctors say it’s likely he is fighting a virus, and they are probably right. But there’s no knowing for sure – there is just waiting and watching and hoping that the odds are with us. The doctors have knowledge and experience with childhood cancer; I have instinct and experience with my child. But cancer laughs at all of that. Cancer does what it wants with no regard for knowledge, experience, love…life.

It doesn’t help that Jack has been taken off most of the chemo medications that keep cancer at bay. So even if it is a virus, it’s a virus that can open the door to other things.

Jack’s ANC should improve any day now. Or…it won’t and then we’ll need to look at his bone marrow for signs of relapse.

I’m ready for either – it’s the waiting I have trouble with – the not knowing for sure. After twenty months of Jack fighting cancer, I still haven’t gotten used to it.

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Comments

  1. I’m so glad you were able to take this time off of work, and stay home with Jack. That is really good.

    Sending lots and lots of prayers for all you.

  2. Stay positive. It sucks. I really hated those fevers that came out of nowhere and then ended up with long hospital stays, too. But don’t let the cancer know you’re worried. Sending positive thoughts from IL to Cali…

  3. <3

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