130) Day 3 – childhood cancer awareness month

Today’s not-so-fun fact from Childhood cancer Warriors is about tumours: 

 

Today's I Draw Childhood cancer Infographic is Melanotic Neuroectodermal Tumour of Infancy:

 

 

129) Day 2 – childhood cancer awareness month

Today’s I Draw Childhood cancer infographic is Embryonal Rhabdomyosarcoma:

 

Today’s not-so-fun fact from Childhood cancer Warriors tells us a bit about what cancer is:

 

128) Day 1 – childhood cancer awareness month

The following infographic, I downloaded from a childhood cancer support group site on Facebook. There is actually a set of 30, and It was being shared so that it can be further shared during Childhood cancer Awareness Month to bring about more visibility to the cause. The statistic on his image is American, and I’m actually surprised that it’s not higher. The 2019 Canadian statistics report that an average of 1000 people aged 0 to 14 years are diagnosed with cancer every year. (https://www.cancer.ca/~/media/cancer.ca/CW/publications/Canadian%20Cancer%20Statistics/Canadian-Cancer-Statistics-2019-EN.pdf) With population that’s approximately 10 times our own, I’m surprised the American statistic isn’t closer to 10,000. 

 

The second infographic I’m posting comes from I Draw Childhood Cancer. (https://idrawchildhoodcancer.com/) The person behind I Draw Childhood Cancer is Angus Olsen, a former Disney animator. Angus “sat by his daughter’s bedside during her treatment .... and began doing little drawings about what hospital was like.” He’s written a series of books to explain cancer, medical procedures, and devices such as PICC Lines, NG tubes, and ports at a level aimed at younger children. If you’re interested, please follow him on social media. FB (https://www.facebook.com/idrawchildhoodcancer/) IG (https://www.instagram.com/idrawchildhoodcancer/) TW (https://twitter.com/idrawcancer) Visiting any of these links, you will see his most recent illustration that’s both a tribute and a thank you to Chadwick Boseman. It’s very poignant, and it made me well up. I won’t say any more about the image, I’ll just let you click on the links to have a look. Each I Draw Childhood Cancer card will be about a different type of cancer that affects children. Today's card is Anaplastic Ependymoma.

 

 

127) Childhood cancer awareness month

Today is the last day of August, and is September 1st, which marks the beginning of meteorological autumn. Yes, it’s a thing (https://www.ncei.noaa.gov/news/meteorological-versus-astronomical-seasons). I honestly don’t know where summer went this year.

Tomorrow also marks the beginning of something else of importance, Childhood cancer Awareness Month. Every day in Canada, 6 children are diagnosed with some form of childhood cancer. The causes behind developing cancer in childhood are not well understood, and it is one of the leading causes of death in persons 14 years of age and under. Unfortunately, for a disease that is killing so many children, childhood cancer research is grossly underfunded, receiving only about 5% of all research dollars.

The colour for childhood cancer is gold, so you may see a number of people on social media post images, or update profile pictures that include this colour. Over the course of the month, I will be sharing a number of images & facts to bring about more awareness to childhood cancer. As copied from https://www.childhoodcancer.ca/About-Us/News/September-2020, a number of Canadian landmarks will be lit up gold to mark the start of Childhood Cancer Awareness Month:

Alberta
Calgary Tower (Calgary)
Reconciliation Bridge (Calgary)
McMahon Stadium (Calgary)
Arts Commons (Calgary)
Telus Spark (Calgary)
ATB Place (Edmonton)
High Level Bridge (Edmonton, on September 2, 2020)
Sylan Lake Lighthouse (Red Deer)
Crooked Creek Gazebo (Crooked Creek)
Fairview Gazebo (Fairview)
Airdrie City Hall (Airdrie)
Airdrie Fountains (Airdrie)

British Columbia
BC Place Stadium (Vancouver)
Canada Place Sails of Light (Vancouver)
Maple Ridge City Hall (Maple Ridge)
Fraser River Footbridge (Quesnel)

New Brunswick
NB Legislature (Fredericton)

Newfoundland & Labrador
Confederation Building (St. John’s)
Government House (St. John’s)

Nova Scotia
Halifax City Hall (Halifax)

Ontario
CN Tower (Toronto, standard light show runs for 8 minutes at the top of every hour)
Toronto City Hall (Toronto)
Toronto Sign (Toronto)
Princes’ Gates Arch at Exhibition Place (Toronto)
Niagara Falls (Niagara Falls)
Riverwalk Commons and the Fred A. Lundy Bridge (Newmarket)
London City Hall (London)
Oakville Town Hall (Oakville)
Kingston City Hall (Kingston)
Springer Market Square (Kingston)
Hamilton City Hall (Hamilton)
Hamilton Sign (Hamilton)
Paris Dam (Paris)
Civic Centre Clock Tower (Mississauga)

Prince Edward Island
The Holman Grand Hotel (Charlottetown)
Charlottetown City Hall (Charlottetown)

126) Three fvcking years

Little did I know it at the time, but 3 years ago today was the last day of my life. I shouldn’t be melodramatic, it was the last day of my blissfully ignorant life, before I changed from a parent to a parent of a child who has cancer. I don’t recall what I did on the evening of July 21^st 2017, but I do know that when the phone rang the next morning, my life as I knew it, had exploded.

Most often, people choose to become parents, though from time to time, it does happen by accident. No one chooses to become a parent of a child with cancer, or a cancer parent, if you will. It chooses you, and after it latches on, you’ll never be the same person ever again. I may seem like I’m still regular me, or that things have gotten back to normal, but it’s not true. There’s a new normal that settles in, and the best you can to is try to adjust to it. I still laugh, make up (bad) jokes, and crack sarcastic comments, but if I want to be truly honest with myself, it’s all a front. I think I use it as a kind of armour to distract myself so that my thoughts don’t drift back into feeling down, or experiencing anxiety about our situation. I honestly can laugh, feel happy, and smile, and it’s genuine in the moment, but when things quiet down & I’m alone with my thoughts, I undoubtedly experience feelings of sadness, worry, and sometimes hopelessness.

I haven’t written much lately. Feeling down has been part of the reason. Extra worry about an immunocompromized child while the world is in the midst of a pandemic is another. How many times can I write about how I’m worried about my son with respect to COVID-19 before I begin to bore myself, let alone the people who may read this? E has about 2.5 months left in his treatment, and is all finished with oral chemo on the 6^th of October. We’re 3 years in to treatment now, and it has been a grind. I’m done. A couple of other families we know, started treatment after us, and are already done. Their children are girls, and girls have a 2 year course of treatment versus the 3 years for boys. There’s no sour grapes, I’m not angry, or upset, I’m honestly truly elated for them that their treatment is done. We’ll get there soon, though, I may feel a little jealous. That last little part won’t be news to them if they’re reading this, they know! I just want E’s treatment to be done, I’m over it. Finish already. In October, treatment will be complete, but it will never be truly over over, because there will still be monthly checkups in the short term, yearly checkups in the long term, and all of the stress an anxiety that comes along with that.

Work has been a good distraction lately. I’m elbows deep into a project which had been delayed from March. It’s keeping me really busy, so that’s a good thing. But it’s also been a bit stressful because through no fault of my own, the start date slid from March to June, and now everyone wants it done yesterday. Despite this distraction today, my thoughts kept slipping into the past, to July 2017, and the days leading up to & immediately after the diagnosis. It was an awful time. I’ve written about feeling completely disassociated with my body; seeing myself in the 3^rd person with the sensation of watching a movie about my life where everything was going wrong and I was powerless to change any of it. At that time, I couldn’t see my life 3 hours into the future, let alone 3 days, 3 weeks, 3 months, or 3 years. I honestly could not picture myself in July 2020, being 3 years into treatment, and almost done. But somehow here I am. Three fvcking years later.

Oh, and fuck you cancer.

125) I screwed it up

October 6th is E’s EOT date, so we have less than 4 months to go. We’re in the proverbial home stretch, and I did my first big medication screwup this week. We’ve missed a couple of doses – it happens, but this was something different. E receives his methotrexate on Wednesday, and gets 4 x 2.5mg pills for a total dose of 10mg. Normally, we pick up our prescriptions from the pharmacy at SickKids. At our last visit, I forgot to ask for a refill of this particular medication, so we got a prescription from E’s nurse practitioner, and filled it at a pharmacy near home. Unbeknownst to me, they gave us 10mg instead of the 2.5mg ones. On Wednesday, when it was time for his methotrexate, I dosed him with 4 x 10mg pills. Since the pills were the larger dose, I should have only just used one.

The 10mg pills were the exact same size & shape as the 2.5mg ones, so there wasn’t a visual cue that something was different. There were only 4 pills in the bottle & that didn't strike me as strange because pharmacies are restricting the amount of pills that are given out due to COVID. The pharmacy we picked up the pills from was the same chain, and should have had access to E’s medication history. They should have attached a visible note, or given a verbal message at pickup to let us know that the dosage had changed. I accept some of the blame, because I did not look at the dosage on the bottle before administering them to him, but when you’ve been doing something for the 2+ years we’ve been in maintenance, you start to go on autopilot a little bit.

So, this Friday morning, when I randomly had the epiphany that I’d over-dosed my son on Wednesday, I called E’s nurse practitioner at our satellite clinic. She called the oncology department at SickKids, and called me back a little bit later. They said not to worry; early on in treatment their methotrexate doses are much much higher than what he accidentally received this week. The most likely thing that will happen is that his counts will plunge. They said to watch for abnormal behaviours, vomiting, diarrhea, or bleeding. We are to bring him in for an unscheduled CBC next week to check his blood. He's seemed absolutely fine so far, I haven't noticed any side effects or changes, but I feel terrible. I feel like an idiot, and a moron. I'm both angry, and disappointed with myself. I feel like I let him down, because I'm the adult, and I'm supposed to make sure things like this don't happen.

124) Threes

Today was a bloodwork day for E. We received a phone call from E’s nurse practitioner yesterday, and apparently, today was going to be a busy day, so all appointments were being scheduled rather than their regular informal show up whenever you like policy.

They still have a one-parent-per-patient policy in place, and I drew the short straw, so we packed up, and left the house a bit before 10 am, arriving at the hospital a few minutes before our 10:30 am appointment time.

There are plexiglass booths through the main doors, where you are asked why you’re at the hospital today, and if you have any cough or fever. I was handed a mask & a sticker, and I was on my way to the 7^th floor.

On 7, we were ushered straight into the clinic room. E’s nurse practitioner, registered nurse, and child life specialist were all there today. Because of the one-parent-per-patient policy, I hadn’t seen any of them since early March. My wife took E to his satellite appointment in April, and I took E to his May appointment, but it was a lumbar puncture at SickKids. It’s always nice to see those three ladies.

E was given a once-over by his nurse practitioner, and then we were ready for port access. Well, upon taking off his shirt, we discovered that, surprise, he wasn’t wearing an EMLA patch. He was wearing one at home, and I dug around in his shirt to see if it had gotten stuck to the fabric. Nope. We asked him about it and he said “I took it off”. We asked him where it was, he said “at home”. Sure enough, the next time I was on my phone, a message had come in from my wife saying that she had found the EMLA patch on the floor at the house. They have a fast-acting numbing cream, and that was applied in place of the EMLA patch, but it set us back 15-20 minutes while we waited for it to do its work.

The previous two times E needed bloodwork done, we had problems with his port. He’s almost always required a saline flush before there was blood return. At both his April & May appointments, he needed a clot buster called tissue plasminogen activator (TPA) before we could get blood return, so I had a feeling going in that something like this might happen again. Yup. After he was accessed, his port must have been flushed 6 times, and there was nothing coming back. Around 11:40 am, they administered the TPA, and we were moved over to an empty room to wait it out.

Fast forward to two hours later, we were brought back to the clinic, and it was again attempted to get blood return from E’s port. The TPA sort of worked. The plunger was easier to push in on the flush, but when trying to draw blood back out, it came out in only a trickle. It was better than before, when there was zero blood return, but it didn’t work anything like it should. There was enough in the vial to do the rest of the blood tests & it was finally time to go.

Getting back to the car, there were a couple of dents in the back bumper, and it looks as though someone hit it when trying to back out of a spot. No sorry note, no contact info, they hit it and drove away. Things like that are difficult for me because of the nature of my personality. I tend to get stuck thinking on something, and have problems shrugging it off. With everything going on it the world at the moment with pandemics & social injustice, this really isn’t that important. There are bigger fish to fry.