101) Ch-ch-ch-ch-changes

We heard some talk last week. One parent from our support group had received a phone call about it. There was some more concrete information posted in an online support group. It is now confirmed that changes are coming to the AAL0932 acute lymphoblastic leukemia standard risk protocol.

Under the new guidelines, two chemo medications will change frequency, and two chemo medications will remain unchanged. Under the current guidelines, E receives dexamethasone, and vincristine every 4 weeks, methotrexate weekly, and 6MP daily. When the new guidelines come into effect, E will only receive dex, and vincristine once every 3 months at his lumbar puncture. Methotrexate and 6MP doses (which are given orally at home) remain untouched.

Dex is a steroid, and though he reacts slightly differently to it every time, it generally makes him extra hungry, tired, and cranky. Vincristine is another chemo drug which is actually derived from a flower, Madagascar periwinkle. E, usually experiences a bit of constipation after vincristine, which we treat by giving him a few doses of stool softener. Other side effects can include tingling in the extremities, hair loss, and unclear thinking due to low blood sodium.

From what I understand, clinical researchers, and oncologists have determined that there is no difference in expected outcomes, or 5-year survival rates between groups of kids who receive dex & vincristine monthly versus those who receive it every 3 months. The general belief is that the treatment is over-dosing leukemia patients, and they are able to switch to a lighter treatment schedule without changing survivability rates.

I don’t feel too worried about the change in medication doses. I’m certain that this is an Ontario-wide change, and I even think that it is a North America-wide change, but I’m not 100% on that one. I have every reason to believe that the researchers and oncologists have the best interests of these children in heart and mind, and this was not a change that was entered into lightly. Due to the negative side effects, long-term effects, and late-term effects of these drugs, it’s beneficial to take less of them if it does not change the treatment outcome.

What DOES make me worried is that along with this decrease in medication frequency, comes a decrease in bloodwork frequency. We’re currently going to our satellite clinic every 2 weeks to do bloodwork, and the new guidelines will drop the frequency to every 4 weeks. It was a bit of a stressful transition from frontline treatment to maintenance, because we went from weekly visits for bloodwork to bi-weekly visits. I wasn’t expecting to drop to monthly visits until October 2020, when E reaches end of treatment. I don’t know what to think about this right now, other than worry. I feel uneasy with the thought of only visiting once a month. Obviously, we’d go in if he was unwell, or had a fever, but I’m concerned that there is going to be less eyes on his progress, less data points to track his levels. I’m worried that the extra space between visits might cause something to be missed.

I was at our satellite clinic this morning with E for a quick finger poke for a CBC to check his counts before his lumbar puncture next week. Spoiler alert: his counts came back fine, so it looks like our SickKids visit is a go. I was speaking to our nurse practitioner & RN about this, and they both said they don’t mind us continuing to come in every 2 weeks for bloodwork. E won’t be receiving chemo at our satellite clinic anymore, bloodwork is done with a quick finger prick, and only takes between 5-10 minutes. So, I think we are going to push for continuing the every-2-weeks-bloodwork when we meet with the oncology team next week. Or, we’ll put our foot down, and just say we’re going to continue, but I don’t expect we’ll have to push back too hard on this.

100) Community

I almost don’t know where to begin. My writing in the last little while has slowed to a trickle. I have things to write about, but I haven’t felt motivated to start.

One of the upsides of the world of childhood cancer is the community. Until I get to know someone well, I’m normally shy and introverted. In spite of that, I feel quite comfortable talking to other parents we meet on clinic days, or at our parental support group. I can’t speak for everyone in this community, but I feel a connection with other parents that we meet. There’s a shared experience of having a child with a life-threatening illness. Having to inject, and administer terrible drugs with horrible side-effects to your child. The worry, the fear, the struggle to accept that your old life is gone while trying to navigate your new normal. I meet other people who are walking through the same hell as me, and I feel a camaraderie. I don’t necessarily have to know people well to connect, and root for them. Their kids’ successes are your own successes, and their kids’ setbacks are your own setbacks. Everyone I’ve met would be welcome in my home for coffee or tea if they were in a bad state, and they’d be invited to share a meal and good company if I knew they were alone for a special day, or holiday.

A little boy we know passed away from cancer back in March, and I’ve been pretty upset about it. We didn’t know him & his family overly well, but we didn’t need to in order to share a sense of loss. We only met them a number of times when our clinic days happened to overlap, and also at a POGO Christmas party, but I think about their family almost every day. I’m sad that a family has to move forward without their little boy. I’m also angry about how underfunded childhood cancer research is. Childhood cancer only receives 5% of all cancer research funding in Canada, yet cancer is the leading cause of non-accidental death in children. We need to properly fund childhood cancer research. Most chemo drugs were developed for adults, and given to children in smaller doses. There are horrible long-lasting, long-term, and late side effects of using these drugs.

Kids shouldn’t get cancer, and they most assuredly shouldn’t die from it. We need to do better for our children. If you are donating to a cancer charity, please think about making a donation that will specifically go toward childhood cancer research.