Hope Versus Belief

It was a bad week. It was somewhat expected – for some reason, bad shit tends to happen surrounding my birthday. Every freaking year (the most famous year being when my brother went to jail and David lost his job). So when I heard on the Friday before my birthday that my brother had physically assaulted my mom, I knew this year would be no different. Still, I hoped it would be and all week I adjusted my birthday plans, trying to counteract the crap being flung at me.

Let’s see how that worked out, shall we?

Jack came down with the stomach flu on Monday. We spent 5.5 hours in the ER because Jack got a fever of 102 and became dehydrated from all the vomiting. Our experience in the ER was horrible. Cancer patients are supposed to be isolated from the general population…but that didn’t happen – we were told to sit in the waiting room and then the lady next to us started vomiting immediately. I put a mask on Jack and moved away from her. After an hour and a half, I had to call the oncologist on-call and asked what we should do – perhaps drive to another ER? Fearing we’d face the same kind of wait at the Oakland ER, the oncologist called to complain and we were moved to a gurney in a hallway. I later had to be asked to be relocated because a lady nearby started hitting herself violently and muttering under her breath. And nearly four hours into our visit, I asked David to call the oncologist again because we were STILL waiting for an IV and antibiotics – even though cancer patients presenting with fever should receive antibiotics within an HOUR of arrival. The oncologist chewed the resident ER doc a new one and we were given our own dedicated nurse within five minutes of that call…apparently the clinic is filing a report about the ER, as well.

poorrating

Jack has something to say about the ER visit.

Anyway, Jack started looking better immediately after getting IV fluids and antibiotics. He was doing well enough to go to school for a few hours on my birthday (Wednesday). I was feeling ill that day, so I stayed home and slept. I said it at the time and I’ll say it again – that was a decent way to spend my birthday. Nothing bad happened while I slept.

Thursday Jack woke up feeling ill again. His labs showed that he was neutropenic and we were told (with a sigh of concern) to stop chemotherapy.

Friday morning at 4:30am Jack awoke from a bad dream and started shivering uncontrollably. His temp hovered around 100 degrees. When I went back to bed, I warned David that it would likely rise above the 101.5 threshold (I had a work commitment that I could not miss). Right after Jack woke up for the day his temp spiked. He was on his way to the hospital by 8am. He was admitted and put on antibiotics for the second time that week. He was swabbed for the flu, RSV, and c.diff. The c.diff came back positive (probably acquired during that extended ER visit!) so he was put on a second antibiotic.

Jack’s ANC had somehow skyrocketed overnight, though – from 341 to 4,774. We don’t recall it ever being that high since his diagnosis almost two years ago. One of the oncologists at Kaiser said that was a high ANC for healthy people. His body is working hard to fight these illnesses. We are surprised – and concerned – that he actually has that ability considering that he is supposed to be immunosuppressed. But I guess a night off of chemo was all it took.

A bit of an explanation here: every time Jack’s ANC dips below 500, oral chemotherapy is stopped. When his ANC goes back up and the chemo is restarted, they start it at 50% of the highest tolerated amount before suspension. The dose is ramped up again over time as long as his counts stay over 500. This is at least the third time since August that Jack’s chemo dose has been suspended and restarted due to neutropenia.

Back in early August, pre-hospitalization, he was up to eight chemotherapy pills on Mondays. He is now down to two chemotherapy pills on Mondays. Two days a week, he takes no chemotherapy at all. That is not at all how it’s supposed to be to maintain remission during treatment.

Over the last four months, Jack’s body has become less and less tolerant of the chemotherapy he’s been getting for nearly two years. The doctors cannot seem to explain to me why that is. And it’s worrisome because he can’t consistently stay on high enough amounts of chemotherapy to be sure that any lurking cancer cells are held at bay.

In other words, every time chemotherapy treatment is suspended or doses are reduced, the probable success of the treatment is decreased.  And every time that happens, our worry increases. We worry when there are new symptoms with no apparent cause. We worry that so many of the issues Jack has had over the last four months so closely resemble the symptoms he presented with at diagnosis. We worry every time the oncologists shrug their shoulders.

Oncologists, don’t shrug your shoulders. My son has cancer and you haven’t seen these issues before? Go talk to other oncologists and FIGURE IT OUT.

Ahem.

When I mentioned on Friday to a co-worker that Jack was going back to the hospital, she tried to reassure me – “Jack is going to beat this.”

I hope that is true – I hope with all of my heart. But so much of this cancer journey has not gone as we were advised it would and so many things are left unexplained by our oncology team. So I’ll believe it when I see it.

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Comments

  1. Do you say those exact words to his doctors? About not shrugging shoulders and to figure it out! I would!! Stay strong and I hope he starts feeling better.
    p.s. We had a bad ER experience while on chemo, too. Do ER doctors really never see children on chemo that are vomiting?!?! Geesh!

    • I don’t…the onc already mentions fairly often that Jack only seems to feel poorly at my house (not dad’s) and I can’t even tell you how many times they’ve suggested his symptoms are due to school avoidance (even though I’ve explained that he beats himself up over missing school). I think the best course of action would probably be a second opinion from another hospital with a better reputation…but that is pricey. :(

      It’s strange because it doesn’t sound like our nurse case manager agrees with our oncologist, either. The oncologist suggested we are drawing labs too often (as the reasoning behind the yo-yoing counts), but we are only doing it when they tell us and according to protocol. The case manager didn’t understand how we would do things differently and expressed my same frustration. And when we were in the hospital the oncologist was trying to push Jack to learn how to swallow his 6mp and methrotrexate (he currently chews them in a small amount of nutella) so that they would ‘work’ more effectively – and yet his ANC keeps dropping drastically as it is, suggesting the chemo is being absorbed just fine. It felt like the onc was picking on the fact that he can’t swallow his meds because she is frustrated that his body is less tolerant of the chemo and she doesn’t know why. She has terrible timing, too – pressuring a sick and highly sensitive kid to learn how to swallow pills is really just counter-productive!

      (Btw, he does feel poorly at his dad’s, too, but he’s there less often, doesn’t have to deal with school wearing him out on weekends, and also his dad doesn’t deal with his complaints well so Jack just tends to not complain there.)

      • I dislike it when doctors or nurses try to push things like pill swallowing on kids. Zoe wouldn’t swallow pills unless they were crushed. I don’t know if it compromised the efficacy of the 6MP, but we did it! And she would prefer anything that could be taken in liquid form to be in liquid form, no matter how horrible it tasted!
        Sorry to hear you and the doctor don’t see eye to eye. That must be disheartening for you.

        • It’s really frustrating! It’s like the ped onc doesn’t know children very well1 Jack was hours away from getting an NG tube back in the spring because he’d developed a huge aversion to taking pills – with the doc pressuring him, I am terrified it will happen again. It’s really tough for him to handle stress/pressure from other people.

  2. So I feel like I could/should touch bases with you more often. If only to say hi and I’m thinking about you…but I find myself not knowing what yo say to my dear friend that my heart is breaking for. I cannot even begin to fathom what you are going through. Or what Jack is going through. Please know that I AM thinking about you, and hoping and wishing for you. I am sorry for all that you guys are having to endure

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