107) Ailments, allergies, and articulation

Nineteen days into September, and despite me wanting to write more for Childhood cancer Awareness Month, and leukemia Awareness Month, I’ve managed 3 posts. I started off strong with 3 posts in 3 days, but then life & family responsibilities bumped me out of my lane. There’s been a few night where I’ve been too exhausted to be able to gather my thoughts & organize them into some sort of written form. A good number though, have been from the boys. I’ve either been snuggling one of the boys to sleep, and I’ve inadvertently put myself to bed for the night as well, or E has had a random late afternoon nap, and he’s up with us in the family room.

We’ve already had a couple of cases of “teh sicks” creep into the house. The night of Tuesday September 17^th, both J & E had been put to bed. E started coughing, and wouldn’t you know it, it’s our old friend croup. I sanitized the cool mist humidifier, brought it into our room, and E slept with us that night. It seemed to help him after running for about half an hour. Still though, between the hacking & runny nose, they caused him 2 separate vomiting incidents in the night, and he didn’t want to sleep. Shortly after the second vomit, I heard J start a croup-y sounding cough in his room. Thankfully, he only coughed a little bit, and nothing more really came from it. My wife was really worried about E, but I wasn’t as concerned as she. I mistakenly thought the next morning was bloodwork day at our satellite clinic in Scarborough, but my brain was one week early. Still, we called, and E’s Nurse-Practitioner & RN from the clinic said to bring him in, and they would check him out. Everything ended up being okay physically and bloodwork wise. We were given a dose of dexamethasone to bring home to give to him that night if his coughing returned. An oral dose of dex is used to treat cases of croup, but dex also doubles as one of the drugs given to chemo patients on a regular basis. Parents of kids with leukemia don’t look forward to steroid week.

J has had 3 cases of mystery hives in the past 6 days. He’s quite the picky kid when it comes to food, and he has a limited range of things that he’ll eat. It’s almost made it more difficult to nail down the source. He had another case tonight, so we gave him a dose of Benadryl, and both of us snuggled him until the itching stopped, and he was able to fall asleep. We’ve been wracking our brains trying to remember what he’s had for meals & snacks since last Saturday. Really, the only thing that we can pin to all 3 incidents is apple. It’s weird, because he’s always loved apples, but has been asking for them less in the past month. It seems kind of odd for an allergy to seemingly come out of nowhere, especially with a food he has eaten many, many, many times before. But, I’m sure that stranger things have happened.

E is getting ridiculous with his words, and speaking in sentences. I’d previously written about how he was language-delayed, likely due to the chemo. It does happen in younger kids who are diagnosed with cancer, along with a whole other host of side-effects, long-term effects, and late effects that I won’t get into in this post. I wouldn’t say that he’s caught up, but he’s progressing in leaps and bounds. Previously, you’d hear 1 or 2 words, and he wasn’t very interactive. Now, he’s regularly speaking in 4, 5, and sometimes 6 word sentences. He’ll give you yes or no answers about whether he wants something, when previously it was no response & a guess by mommy or daddy. He gets ideas in his head, and has no problem conveying them to you, like asking me to come upstairs & put on a TV show he likes. Just in the past week, a few times he’s said to me: “daddy, feel yucky”. I was a little dubious about whether this was actually true, because he’s quite the parrot these days, and we sometimes ask him if he feels yucky after we give him certain chemo medications. I tested it out the other day; he said “daddy, feel yucky”. I then asked him if he could show me where he feels yucky, and he took his hands and touched his tummy. I asked him if he felt yucky in his tummy, and got a “yeah” response. So, we gave him some anti-nausea medication known as ondansetron, which I still think sounds like the name of a Tranformer.

As a caregiver, I can’t express how wonderful it is that E can finally articulate some of his needs, and how he feels. I don’t want to compare cancer in little kids vs. cancer in big kids. There’s different challenges to each, and it’s just not fair to try and say x is more difficult than y. E was diagnosed at 15 months. For 2 years, we’ve had to try and read his body language, listen to his cries, and even just guess at how we think he’s feeling because he can’t communicate it to us. That being said, E won’t even remember most of his treatment, and I haven’t had to have him ask me about his mortality, a question that would likely be raised by older children.

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.