40) An open letter

UPDATE - 2018-01-29: I received an update from MPP Mr. Ted McMeekin who is also the Parliamentary Assistant to the Premier. He let me know that while Septra itself is not covered, the generic versions of the drug are. Thank you for the prompt response!

Dear Todd:

Thanks for your note and the issue you raised related to Septra.

Given the detail outlined in your thoughtful e-mail, I raised your concern directly with the Minister of Health and Long Term Care. The Minister informed me that the generic drug used in place of Septra is EXACTLY the same as Septra but far less expensive for Ontarians.

Hoping for a healthy 2018 for you and your family members, I remain

Yours sincerely,

Ted McMeekin, MPP

I don't want to drag politics into this blog. This is not a space for that type of discussion.

Recently, Ontario introduced OHIP+ which covers a number of prescriptions for anyone who is 24 years of age or younger. Filling a prescription for E last week, I found out that a preventive medication he is prescribed so that he does not die from pneumocystis pneumonia is not covered by OHIP+.

I like to believe that this was simply an oversight by government bureaucracy, and not a kick in the teeth to parents who have children with cancer, so I decided to write a letter. Below is a copy of what was sent to our Premier, my MPP, the leaders of the NDP and PC parties, as well as the Health Minister and Health Critics. I would like for the government to correct this oversight.

Tuesday January 23^rd, 2018

Dear Hon. Ms. Wynne and fellow Members of Provincial Parliament,

I would like to tell you about my son. He is 21 months old. Like most other children his age, he’s active, and for the most part is a little ball of energy. He’s smart, he’s learning new things every day, he has a great sense of humor, he loves to laugh, he loves to sing, he loves to dance, and he adores Paw Patrol, especially the character Rubble. Unlike most other children his age, he received an acute lymphoblastic leukemia (ALL) diagnosis the day he turned 15 months old.

For the past 6 months, my family has been through hell and back. My son’s cancer has a good prognosis, but that does not make living through 6 months of hospital visits, blood work, and chemotherapy any less stressful. Even though he has no idea about the seriousness of his disease, and the doctors doubt that he’ll remember any of this earliest treatment, my son is the strongest, bravest person I have ever met in my life. Week in, week out, he’s hauled off to appointment after appointment where an assortment of oncologists, nurse-practitioners, and nurses examine him, poke him with needles, and inject him with dangerous chemotherapy drugs which require us to wear protective gloves to change his diapers.

In addition to worrying about my son’s prognosis, and other possible long-term chemotherapy related effects, we need to worry about infection. Children (or anyone) undergoing chemotherapy are susceptible to a form of pneumonia called pneumocystis pneumonia or PCP. As a preventive measure, my son receives an antibiotic named Co-trimoxazole, also known as Septra. Recently, while refilling a prescription, I was surprised to learn that this medication is not one of the ones covered by OHIP+. Luckily I have a drug plan through my employer, and my drug plan covered 80% of the cost of this medication. I say luckily because I understand that some of my fellow Ontarians have had drug plans reject coverage on medications not covered by OHIP+ because OHIP+ is supposed to be the primary payer.

I’ve been critical of the implementation of OHIP+ because I have coverage through my employer and I can afford to pay for the deductible, and for the occasional medication that may not be covered. In my opinion, OHIP+ should have been merit based, and I would have gladly given up my coverage to a senior or someone who truly needs it.

That being said, may I please ask what your government was thinking by excluding an antibiotic that is helping to ensure that cancer patients don’t die from pneumonia? And no, I’m not willing to go to my son’s oncologist to ask if he can be prescribed something different that is covered by OHIP+. SickKids is one of the top, if not the best children’s hospitals in the entire world, and people travel far and wide to be treated by its doctors. The treatment plans have been researched and refined over many years and they give my son the best chance to live a full life, so I refuse to second guess those plans or the brilliant doctors.

The total cost of my son’s Septra prescription was $18.01. After coverage from my employer’s medical plan, I was out of pocket $3.60. For me, this is not about the money, but for other families that have kids with cancer, it very well might be. For me, this is all about principle. A child may be diagnosed with cancer, but the whole family is affected by it. In order to care for the child, one or both parents may have to take time off, or leave their jobs, thereby reducing income. Families of kids with cancer are already burdened by numerous additional expenses such as travel and hospital parking. In a time when many people live paycheque to paycheque, this can put an enormous strain on a family’s finances. When your infant child has the misfortune to be one of ~1500 children diagnosed with leukemia in a year, it chafes to find out that your government’s new pharmacare plan does not cover a drug he needs so that he does not die.

A recent quote in the Toronto Star attributed to Ms. Wynne read:

“And my job is about creating a fair Ontario, creating an Ontario where kids and adults, seniors have the opportunity to live a life that is the very best life that they can live.”

How is it a fair Ontario, when OHIP+ doesn’t cover some of its youngest, most vulnerable citizens for a drug that keeps them alive while they are treated for a life threatening illness?

I sincerely hope this is an oversight, and on behalf of all families affected by childhood cancer, I would like for your government to work on correcting this problem so that going forward, Septra is covered by OHIP+.

Regards,

Todd

39) Blue

Friday January 19, 2018. The sun was shining today; I needed this. The weather has been unbearably gloomy as of late, and the blue sky was a welcome reprieve from the grey doldrums of winter in Southern Ontario. It's funny how the colour blue is used to describe a melancholy state, but a sky that's coloured blue can make us feel wonderful.

The last month of E's treatment has been wearisome. We had a 6 day hospital stay over Christmas when E had a fever, and his counts were low. Almost immediately upon returning home, our eldest, J, was home sick for a week. Two days after J returned to daycare, we took E to our satellite hospital for regular bloodwork. At home, he was fine, but by the time we arrived at the POGO clinic, he had a fever.

So we were admitted for another hospital stay.

This time, we were only in for 3 days, but it's a big disruption in your regular routine. My mom was kind enough to come and stay with us for a couple of days. She assisted with shuttling J to and from daycare, and helping with a number of things around the house, so that we could focus on E and the hospital.

I've been feeling quite low during the past month. We've been quite isolated as of late due to E's immune system being down due to Delayed Intensification. All around us, friends and family are down with sicknesses. We dare not take E out in public places, or to visit anyone, because a simple fever would mean another hospital stay. He's going through enough as it is; we want to keep him illness free as much as we can. I've been trying to write a post about some wonderful, generous people we encountered at the hospital over Christmas, but the words aren't coming out properly. I want to get the tone right, but I feel that I can't get in the proper headspace to do it justice because I'm feeling so awful. I don't remember the last time I shaved. I feel like I'm scruffy and unkempt, but I really don't give a damn. Some days I'm feeling a lot of anger. Other days, it's sadness bordering on tears. There's been a few days where I feel like I just want to crawl into a hole and die. One thing that's been quite pervasive has been an utter lack of patience. I'm down, I'm exhausted, I'm not sleeping well, and I don't always have the patience for J. Overall, he's a good kid, but he needs an abundance of refocusing so that he's not hurting his brother or getting into mischief around the house. Eventually, my patience will run out, and I'll raise my voice to him more than what is needed. Then we're both upset, and in addition to the stress and anxiety I'm carrying around, I take on a load of parental guilt. I don't want to yell at him; I don't want to feel this frustrated all of the time. I'm spread too thin, and I just don't know what to do.

I don't know that there's a solution to what is going on right now. Things should lighten up, things should get better. We just have to get through the rest of Delayed Intensification. It helps a bit to write, hence this blog, but there's not always time or energy for that. I think that everything I'm feeling is probably normal given our situation of having a child with cancer. But I guess that's one of the reasons why I started this blog; the hope that another parent going through the same thing may stumble upon my ramblings and have a moment of normalcy because they can identify with the struggle.

38) Snow tires

This year, for the first time in my life, I bought snow tires.

I've never had them on a car I've owned before because: 1) the Toronto area doesn't get too much snow, 2) there's never anywhere I've really NEEDED to go during a snow event, 3) I'm a cautious defensive driver, and I've found all season tires were good enough going back and forth to work, especially sticking to the 401, or major roads, and 4) if there is a really bad storm, I'll take the day off instead of sitting in crawling traffic for 5+ hours.

This year, however, was different. E has cancer. There are places we may need to go, and if the weather isn't co-operating, too bad, we still have to go. If there's a chemotherapy appointment, and it's snowing, we still need to be there. If E happens to get a fever, we have to take him to the hospital regardless of whether the roads are dry or snow covered.

SickKids is about a 45 km drive, and while our satellite hospital is closer, it's still about a 20 km drive. With E's leukemia, I wanted extra assurance that my family could get to where we needed to go, and could get there safely.

We've already made a number of trips back and forth in some sketchy weather conditions, and the tires have performed amazingly well. In my mind, they've already paid for themselves.

37) 2017 reflections

"#$%! you 2017, don't let the door hit you in the ass on the way out." - me, December 31, 2017

2017. It started off like a regular year, but it all went to hell on July 22nd. That's the day we had 2 separate doctors calling the house before 9:00 AM, telling us to go to SickKids because E's bloodwork from the previous day had abnormalities that needed further testing. That's the day I had to get my parents to drive out from Mississauga so my mom could watch J, and my dad could drive us to the hospital because I was physically unable. That's the day when further testing confirmed that E had standard risk B-cell acute lymphocytic leukemia, or B-type ALL.

Rewind to July 21st, 2017. We had an appointment with a specialist about E's sensitive gag reflex and problems with swallowing textured foods. The specialist looked at E's colouring, and thought that he might be anemic, so we were sent for regular bloodwork. This was probably the last day of my life that will ever have been termed "normal". There are two things about that day that will haunt me the rest of my life, and I haven't written about them until now:

1. On our way home from E's appointment/bloodwork, my wife and I were having a conversation in the car. We were talking about the yellow hue that E's skin had taken on as of late, and the summer colds that had plagued our household. Agreeing that it was frustrating to see the boys go through these minor ailments, we said aloud that we were lucky to have two healthy children. Little did we know that E's body was already wracked with leukemia, and our whole world would come crashing down in less than 24 hours.
2. Also on our way home, we made a stop at Superstore to pick up something for dinner, or some food item for one of the boys. Upon entering the store, we were greeted by a volunteer who was soliciting donations for SickKids. My wife and I politely explained that we were already monthly donors, and the volunteer thanked us for our support. We proceeded in to the store, blissfully unaware that we would soon be spending the next 8 days in the hospital that had just asked us for a donation.

After E's diagnosis, we've talked about these 2 circumstances on a couple of occasions, and we both find them a little freaky. When I think about them, they give me the chills, but I don't think that the universe was trying to tell us something, or give us advance warning of what was to come. Just a couple of strange coincidences in a year that I'd mostly like to forget.