2017-10-26

22) Ubuntu

Today was a chemo day for E. Instead of traveling to SickKids, we went to our satellite centre. While at SickKids, E receives care at the likely soon-to-be-renamed Sears cancer Clinic. POGO (Pediatric Oncology Group of Ontario) has a Provincial Pediatric Oncology Satellite Program where some treatment is provided at a hospital closer to home. Our satellite centre is Scarborough Centenary.

To document something that likely amuses me and only me, for the third straight visit, the LCD on the machine at the parking gate was displaying the GRUB bootloader. Yup, the hospital, or company that administers the parking at the hospital runs Ubuntu, and the machine that controls the information display at the parking gate is stuck at the bootloader, waiting for input. I find it amusing to see the different places where Linux and open source software pops up.

The view from the 7th floor POGO clinic, facing north.
 
E has been fighting both a cold and Hand-Foot-Mouth disease, so we were quite surprised when bloodwork came back within normal ranges. They decided to proceed with chemo, so a dose of vincristine as well as a dose of methotrexate were administered. Shortly afterward, we were on our way home.

2017-10-21

21) Gord

What more can I say about Gordon Edgar Downie that hasn't already been tweeted, written, or spoken in the past couple of days? Gord Downie died in the evening hours of Monday October 17th, 2017, and the news broke the next morning a little before 9 AM. I'm going to write a bit about what he, and his band meant to me.

I missed the first Tragically Hip EP, and their first two LPs. I recall becoming aware of the band when "Fully Completely" was released and "Locked in the Trunk of a Car" was getting radio airplay. I remember buying the album on cassette a while after it had been released. Those were the pre-internet days, and you would hear singles from the album on the radio, or MuchMusic if a video had been made, but really nothing else from the rest of the album. You had to either really like the band, or had heard and liked a couple of the album singles if you didn't want to chance on buying a stinker. By that time, I had liked enough of the the aforementioned "Locked ...", as well as "Courage", and "At the Hundredth Meridian" that I decided to buy "Fully Completely". For a young person, trying to find his place in the world, "Fully Completely" was an album that gave a sense of place. Singing songs with references to Jaques Cartier, the CBC, prime ministers, corduroy roads, the Leafs, etc., here was a band whose lyrics spoke of my country. Canada. This nation, with an inferiority complex, often looking for American or world validation. The Tragically Hip were telling our own stories for better, or for worse.

After a culture shock of a move from a small northern Ontario town of 1 200 to a bustling southern Ontario suburb of 500 000, one thing my peers still had in common was a love of The Hip. "Day For Night" through "Trouble at the Henhouse" through "Phantom Power", The Tragically Hip were at the height of their musical power, at least for me. Still having their moments, "Music @ Work", "In Violet Light", "In Between Evolution", "World Container", and "We Are The Same" were all very good albums, but to me at least, didn't quite equal the heights of "Fully Completely" through "Phantom Power". In my mind, The Hip made not one, but two perfect albums: "Fully Completely", and "Phantom Power". I can listen to those two LPs from start to finish, without skipping a single song, and I feel that any song off of either album could have been a potential single.

I also followed Gord's solo albums, from the quirky "Coke Machine Glow", to the more polished albums "Battle of the Nudes", and "The Grand Bounce". Around 2012, I had a bit of a falling out with The Hip. I heard "At Transformation" from their new album "Now For Plan A", and it just didn't grab me. Worse than that, after listening to the album on the band's Soundcloud page, I got such a been-there, done-that vibe that I fell out of love with The Hip. Suddenly, I felt as though I couldn't listen to the band anymore. This happens to me from time-to-time. I'll overplay an artist, and have to put them aside for a little while, but I will eventually come back to them. I was on the fence still, after hearing about "Man Machine Poem". The album title shares the name of a song included on the previous "Now For Plan A" which had not impressed me. But the first single "In a World Possessed by the Human Mind" really grabbed my attention, and I found myself falling for The Hip once again.

I was completely shocked on Tuesday May 24th, 2016, when I turned on the TV in the morning and saw the scrolling news ticker announce that Gord Downie had an incurable form of brain cancer. The Hip were a band that I had always just expected would be around, but now they had a definite end on the horizon. On the surprising side, Gord's illness be damned, they were going on tour! For the next few days and weeks, I played the hell out of every Hip album that I owned. I made a half-hearted attempt to get tickets to a show on the Man Machine Poem Tour, but with a 2 year old and a newborn at home, attending one of these shows was not going to be a reality for me. I made my peace with the fact that my last time seeing The Hip would be the Canada Day show I saw at the Budweiser Stage Molson Amphitheatre in 2004.

September 2017 came around, and my youngest was 2 months into his own cancer diagnosis. In the process of reading about my own son's illness, I had stumbled across an article about Gord and his cancer. I doubt that I'd be able to find it again, but the article spoke about Gord's treatment, and how the options that he chose would give him up to a 5 year life expectancy. Not even a full 4 weeks after reading this, would his disease come to take Gord from his loved ones.

This week has been a rough one. On top of both J, and E being sick with hand-foot-and-mouth disease, a hospital visit for E because of a fever, and consequently little sleep for us, Gord Downie passed away. It's not the same disease; E has leukemia, and Gord had gliboblastoma. Two very different cancers with two different prognoses. Comparing them would be like comparing apples and oranges, but at the base level, they are both cancers. I found myself alternately heartbroken for Gord's family & friends, and worrying about the mortality of my 17 month old. Nothing has happened or changed in E's diagnosis or prognosis, but hearing that this horrible abso-fucking-lutley terrible disease has taken someone away from their family, leaves you extra weary and worried for your own loved one.

And yeah the human tragedy consists in the necessity of living with the consequences under pressure, under pressure.

2017-10-10

20) The look

I noticed it for the first time today.

The look.

The look of pity when someone sees your child, and realizes that they are sick and dealing with a serious disease.

We had a few errands to run and were out in a store when I noticed a woman look over at my son. She didn't notice me watching, but her gaze didn't linger on E for very long. She cast her eyes downward and her mouth tightened up into a frown. This was the first time I've noticed someone flash a look of pity at my son, and I don't know how to feel. I'm not angry, or annoyed, or irritated, but I hadn't noticed a random person recognizing the seriousness of my son's illness before, and I'm not sure what to think.

E doesn't have any hair right now. It started falling out in mid to late August, and we shaved his head rather than watch it get patchy and disappear. Normally when we are out with him, he's wearing a hat. For most of September, and thus far into October, the weather in Southern Ontario has been fantastic. It was a warm day today, and we left his hat at home because we knew he wouldn't be cold. I've recently been wondering what people see when they look at him and see his bald head. Do they see him as a seriously ill little boy, or do they see him as a big-for-his-age infant who hasn't had his hair grow in yet? I may be biased because he's my son, but I genuinely think that he looks cute without his hair. I think it makes him look younger than his 17 months, and I almost don't recall what he looked like before his hair started falling out.

Seeing "the look" tells me that people recognize what our family is going through. I guess I don't have to have it all figured out in terms of what to think, or how to feel. He has cancer, and people recognize it as such. We're not trying to hide it, and we're not embarrassed by it. It is just a strange, almost out-of-body experience when you can see your own situation as observed through the eyes of another.

2017-10-09

19) Giving thanks

October 9th, 2017. Thanksgiving. At least here in Canada anyway. Despite having my second born diagnosed with leukemia on the day he turned 15 months old, I still feel like we are lucky. I feel that should give thanks and list a few of the great things in my life:

  • I have two wonderful boys, and a wife, all of whom love me unconditionally
  • I have a roof over my head, and food in my belly
  • I have a good support system which includes family through both blood & marriage, as well as friends
  • an overwhelming number of people reached out to offer support and kind words when the news of E's leukemia diagnosis broke
  • the same overwhelming number of people are all standing with us, optimistic for E's recovery
  • there is an entire team of doctors, nurses, and staff who are all working together to ensure that my little E receives the best treatment that he can receive
  • we have access to a world class children's hospital such as SickKids
  • I live in a country like Canada where we have universal healthcare so we do not have the additional burden of worrying about how to afford hospital bills

Happy Thanksgiving FVCKcancer readers!

2017-10-08

18) Applesauce

Anyone who may have found this blog who is also the parent of a cancer patient knows about Sulfamethoxazole/Trimethoprip a.k.a. Septra. Septra is an antibiotic which is prescribed to cancer patients to take 3 days per week as a preventative measure against pneumonia. These parents would also know that there is currently a shortage of the liquid version and that the drug, as of September/October 2017 is only available in pill form, at least in Southern Ontario. Not really a problem if you have an older child, but if you have a toddler, then it becomes a bit more difficult.

We bought a pill crusher to crush the Septra pill into a powder, and then we have to mix it in with E's food. The problem is that the pill is apparently quite bitter after being crushed and it causes the food to have an off-taste, which means he doesn't want to eat it. E still mostly eats baby food due to an aversion to textures, so we've tried sneaking it in to his pablum, his meats & veggies, and his fruit. Nothing has really worked so far. He always tastes the pill.

I recently found the secret to getting him to eat food with the crushed pill: applesauce. I don't know if it's the taste, the acidity, or whether it's just a little less processed than baby food fruit, but he eats it without problem. If anyone happens to be reading who is also the parent of a young cancer patient, I hope this advice can be of some help.

17) Third time's a charm & the end of the beginning

At SickKids, on Friday October 6th, E had his third complete blood count (CBC) test in 10 days. This time his neutrophil counts were good, and we were able to proceed to the Interim Maintenance phase. Neutrophils are the mature white blood cells that do most of the work fighting infection, so the oncologists want them to be above a certain level before beginning a new phase of chemotherapy. The chemo will attack the leukemia cells, but it will also indiscriminately attack the neutrophils, which will bring his immune system down. A low immune system means a trip to and likely a brief hospital stay should E come down with a fever.

His counts were good, so we had to wait around for the pharmacy to make the vincristine and methotrexate. After a long 1.5 hour wait for blood results followed by a 3.5 hour wait for pharmacy to make E's chemo, we were finally called to the IV room. E was given his chemo through his port and was actually quite relaxed during. Normally he despises the IV room, since it is the room he is poked with a needle to access his port. Since we were downtown and didn't get finished up until around 4 PM, we were worried that we might not be able to make it home to pick up J from daycare before it closed due to rush hour traffic. Luckily, my mother-in-law was able to help us out and pick him up. All in all, a successful but exhausting day.

One other interesting thing we found out about on Friday was the end of maintenance. The oncologist we saw on Friday, a really nice doctor who originally hails from Tennessee, told us that E's last day of Maintenance will be 3 years from today, assuming his bloodwork was fine and that he started Interim Maintenance. The bloodwork was fine, and chemotherapy was started, so October 6th, 2020, a Tuesday, will be E's last day of Maintenance, and after that he will hopefully be cancer-free.

Three more trips around the sun. 2020 seems quite a long way off. There's undoubtedly going to be plenty of ups and downs along the way. Progress, setbacks. Laughs, tears. Stress. But it does sort of feel like a new chapter. Like the end of the beginning.