106) August lumbar puncture

Last night, I wrote that August had been the first calendar month where I hadn’t written a post. I was wrong. Previously, in June, I had gone an entire month without posting something. I had been writing in June, but what I had written is unfinished, and sits in my drafts. I’ll try to finish it and post it sometime. It’s not really timely anymore, but I’ll probably finish it for posterity.

On Wednesday August 28^th, we travelled to SickKids for E’s 3-month lumbar puncture. I continue to sleep rather poorly, which makes getting up in the morning extra difficult. As usual, we weren’t up as early as we had liked to be, so we were on the road later than I had wanted. Being the last week of August, and the week before Labour Day, the traffic wasn’t too busy. We left at maybe 7:45, took the 401 & the DVP, and made it to SickKids by about 8:45. We made a beeline for the parking level P4 (the lowest, and least busy parking level), and we were up to the 8^th floor a bit before 9.

We signed in at the desk, and were taken immediately to the intake room, where E had his weight & height measured, as well as his blood pressure taken. We answered the usual barrage of questions about when he last ate, if he has a fever, his last bowel movement, and if he has a cough, etc. After that we were sent to the recovery room, where E had his port accessed. He was distracted by Rusty Rivets on Treehouse, and he was really good about it this time. Lately, port accesses have involved me putting in something similar to a wrestling immobilizer hold while my wife tries to distract him, and a nurse tries to access him. Like I had said, he was really good about it, they got some blood out of his port to send to the lab, and we were then directed to visit the orange pod to see the oncology team. We were put in a room, and while we didn’t have to wait too long, we had to keep E distracted. He was quite amused by the sink that turns on with hot and cold foot pedals. There also happened to be a doctor’s reflex hammer in the room, and he got a kick out of tapping me on the knee with it. An oncologist we’d never spoken with before came in the room to do a quick exam on E, and to ask us about any questions or concerns. After that, we shuffled back to the waiting room until it was our turn for the lumbar puncture.

If you know E, you know he rarely sits still for long. It’s a children’s hospital, so the waiting room is full of toys. He played with some toys for all of about 5, maybe 10 minutes, but then the urge to run away & explore proved too much, and he was off. My wife and I take turns watching & following him around when he does this. One of us needs to stay with him, and one of us needs to stay in the waiting room to listen to see if we’re called. My wife followed him first & I stayed put, and when he eventually wandered back to the room we switched jobs. E was called for his lumbar puncture procedure around 11:20. We did our usual routine of me carrying him into the room with my wife following. Normally, he wants nothing to do with it; he squirms, kicks, and thrashes to try and get out of my arms while the anesthesiologist does his or her job of dosing him with the medication that puts him under. This time however, he was calm, and just snuggled me while the anesthesiologist connected to his port to deliver the drug. In 10 – 15 seconds he was out, and I placed him down on the gurney where the procedure takes place. My wife & I left to go outside to sit on the bench, and poof, in what seemed like no time at all, the door opened & the wheeled sleeping E out of the procedure room, flashing smiles & thumbs up to let us know that everything went okay.

While he was sleeping in the recovery room, my wife and I alternated running to the ground floor to grab ourselves some food. E usually wakes up screaming & trying to get up after 20 minutes, while we have to try and calm him and keep him laying flat for the remainder of the hour so that the vincristine that was injected into the spinal fluid can disperse evenly and do its job. This time, E ended up sleeping for about 40 minutes, and woke up in a good mood. Because he had to fast for the procedure, he was hungry and was eager for the milk and cookies we had brought for him. In 2 years of lumbar punctures, this was the first time that he had woken up in a relaxed state. It was such a relief to see him that way, and to not have him inconsolably upset.

Before we left, we filled our prescriptions for more dexamethasone (steroid), 6MP, and methotrexate. Little James, whom I had written about last night was in the hospital that day with his mom. We made contact with her, and were able to bring up a bagel so she could have a bit of food and not have to leave her son’s side. We spoke to her in the hallway for a couple of minutes before we were on our way to go home. Seeing the little guy and his mom stirred a number of emotions in me. It was difficult to see how quickly his condition had deteriorated, when just 2.5 weeks earlier he had been finishing his baseball season, and going to Camp Ooch. I’m neither embarrassed, nor too “manly” to admit that I cried during a good chunk of the drive from SickKids to our house.

We arrived home to find my mother, who had come down to help get J off to summer daycare, weeding our garden. She chopped a bunch of peppers, onions, & mushrooms, and we had a really nice dinner of fajitas. I dropped her off at the GO Train, came home, and then fell asleep with J after having read him a bedtime story. The end to a long, tiring, emotional day.

105) Strangers into friends

I sit down this evening to write with a heavy heart.

Today is Labour Day in Canada, and it unofficially marks the end of summer. Most parents are trying to get back into routines, and are preparing for their children to go back to school tomorrow. A family we know from our clinic and parental support group had their son succumb to relapsed neuroblastoma this morning, and instead of back to school, they’re preparing for their child to be buried.

Today has been rough. I’ve been crying off and on all day today. I’m having problems coming to terms with the unfairness of the situation. A family has lost their little boy to this awful fucking shitface asshole of a disease named cancer. He did nothing to deserve this, and now all of his budding lifetime potential is gone. He was only 5 for fuck’s sake. Now is the part where I attempt to explain how I’m not trying to be selfish by writing about my grief over another parent’s loss.

One of the things I see crop up in some of the online leukemia support groups reads: “Childhood cancer makes friends into strangers, and strangers into friends”. Through our journey, I identify more with the latter than with the former. Some people have friends or family turn toxic after a childhood cancer diagnosis, while others are ghosted by their so-called-friends. Like I said, I wouldn’t say that has been our experience, but everyone’s experiences are different. I do identify with the “strangers into friends” part of the statement.

Until you get to know me, I’m a shy, introverted person. Around people I don’t know, I’m usually quiet, reserved, and hesitant to strike up conversation. With other parents of a child with cancer, whether we meet them at clinic, or through our parental support group, I find myself just openly, and easily chatting with them. I perceive a kinship, an understanding. When I meet another parent of a child with cancer, it’s like two dogs meeting in a park. There’s a recognition there. You know that you’re both in that same awful club, and many of your experiences, worries, hopes, and fears line up – you don’t have to explain, they just get it. I consider these people friends, even though we may not know them well, or even much at all outside of our connection with childhood cancer. I’ve written about a similar topic before, but I would be there to help out ANY of these people if they were stuck, or in some sort of situation. I root for their kids; I rise when they’re doing well, and I stumble when they have a setback. Any of them would be welcome in my home to share a meal, or a cup of coffee.

Having said all that, I don’t think I’m projecting my “what if this happens to E?” feelings onto this situation. I don’t think I’m experiencing collective grief either. We know this family – we don’t know them really well – but I’m genuinely upset that this has happened, and there’s nothing that medical science could have done to save him. Neuroblastoma is a cancer that occurs in types of nerve tissue. It is unfortunately, a more aggressive cancer when found in children older that 1.5 years. It’s also one of the types where intensive treatment does not always result in a favourable prognosis, especially in the high-risk group.

This is where the underfunding of childhood cancer research really fails our children. What if there was more funding, and more scientists and doctors were studying it? Maybe we’d be closer to a cure, or at the very least, have higher treatment success rates.

Rest in peace little James, I will always remember your courage, your smile, and your positive outlook on life. You deserved better. All children with childhood cancer deserve better. It’s up to us to try to get politicians and organizations to properly fund childhood cancer research, because right now, we’re failing these children.

104) Childhood cancer Month

I’m sitting down to write for the first time in a while. About 5 weeks to be more exact. August 2019 was the first month where I did not write even one post. I don’t think this space has become a burden where I feel compelled to constantly update even if I have nothing to say, but I also think a little break has been good.

Today is September 1^st, which marks both Childhood cancer Awareness Month, and Blood cancer Awareness Month. Childhood cancer Awaerness Month is being championed on social media with #ChampionCcAM, while Blood cancer Awareness Month is being champoined with #EndBloodcancers, or #BloodcancerAwarenessMonth, or #BcAM. Childhood cancer is represented with a gold ribbon, and Blood cancer is represented with an orange ribbon. Since E is a child with cancer, but that cancer is a blood cancer, I kind of have one foot in each cause.

During my writings this month – and I’m actually going to try to post every day because it is a special awareness month – I’m going to focus more on childhood cancers.

Childhood cancer is the number one disease killing Canadian children.

Childhood cancer occurs randomly, and the causes of most are still unknown.

There are about 1700 cases of childhood cancer diagnosed in Canada every year. That averages to 4.66 families per day, being told some of the worst news that a parent can hear.

Childhood cancer survivors often have late, and long term effects from their chemotherapy, which can cause burdens on social systems like health and welfare.

Childhood cancers grow, and act differently than cancers found in adults, yet most childhood cancers are treated with chemotherapy drugs designed for adult cancers. In fact, since 1980, there have only been 4 new chemo drugs approved that are specific to childhood cancer.

Childhood cancer research is criminally underfunded, accounting for ~5% of all research. Children have the most to lose, yet receive deprioritized funding for their cancers.

Canada has an election October 21^st, 2019. I try to keep this page mostly free politics and partisanship. I don’t care which party you vote for, just get yourself informed, and get out and vote. Along the way I encourage you to speak to your MP candidates to express your desire to see more research funds directed to childhood cancer.

103) 2 years

Yesterday, July 22^nd, 2019, marked E’s 2 year cancerversary. I wrote a little blurb on Facebook about it, and I’m going to Ctrl+C, Ctrl+V that here:

It's now been 2 years ago to the day. I will never forget July 22nd, 2017 for as long as I live. It's not been an easy journey, and it's difficult to put into words the type & amount of anguish I've suffered from having a seriously ill child. There's nothing we can do, other than move forward, put our trust in modern medicine, and appreciate the other cancer families, & amazing healthcare professionals that we've met along the way.

Thank you to family, for being there, for watching our kids when we have an appointment, or need a break. I'm trying to not let myself feel down or frustrated by the fact that we still have more than a year left in treatment, but two years ago, I couldn't even imagine my life two days in the future, let alone where we'd be in 2019. I'm looking forward to the day when our little guy gets to ring the bell, and I secretly hope he rings it so hard, he breaks the damn thing.
FVCK cancer!

My plan was to post this here, and then expand upon it a bit more, but after re-reading it, I don’t think there’s anything else I need to say.

102) Hurley

I woke up this morning to the sounds of E vomiting. The poor little guy. He’s been having a rough go with his chemo as of late. About 8 weeks ago, his 6MP medication was given a small increase, and with it, we’ve noticed an increase in vomiting from what we only can assume is nausea.

I feel so badly for him, and I get so frustrated about the situation. He’s only 3 years old, and he’s a bit language delayed from the chemo. He’s really funny, and smart in a lot of ways, but he doesn’t yet have a large vocabulary. He can’t tell us when he feels ill, nauseous, or sick. We figure it out pretty quickly when he starts coughing, gagging, and then vomiting. It usually happens in the overnight period, or early morning. Previously, he’d have nausea limited to 2, maybe 3 days around the time when we dose him with what I not-so-affectionately call crystal meth-otrexate. Now, with the more frequent vomiting, we’re giving him more doses of his ondansetron to counter the nausea. Sometimes we’ll skip or miss a dose, and sometimes it runs out during the middle of the night, and the little guy gets a case of the pukies. I really wish he could tell us more, or that we could just somehow know exactly what he is feeling.

Getting E dressed today caused me to have a little chuckle. He has a kids’ “Hurley” shirt, and today, unintentionally I guess, my wife selected that for him to wear. The funny thing about this shirt is that “Hurley” is printed somewhat diagonally on the front, and it wraps around the sleeve near the shoulder onto the back. When you’re looking straight on at the shirt, it looks as though it just reads “Hurl”, which was kind of fitting given how our day started.

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.