41) Back on track

Things had really hit the skids during the last 10 days of December, and first few weeks of January. To give a quick play-by-play of the gory details:

1. E had a 6 day hospital stay from December 20th - 26th.
2. J was home sick with croup for a whole week from January 1st - 7th.
3. E went to the hospital on January 10th for what was supposed to have been regular bloodwork, but ended up being admitted from January 10th - 12th because he had a fever, and ended up being diagnosed with Respiratory Syncytial Virus, or RSV.

Due to his intermittent illnesses, and continual low blood counts, E's graduation to Delayed Intensification II was delayed 3 times.

On January 16th, we went to our satellite hospital for standard bloodwork, and the results came back fine, so E was a go for starting the second phase of Delayed Intensification. We were back on track!

On January 17th, we traveled to SickKids so that E could receive his lumbar puncture, and start the next phase. We were a bit late leaving, traffic was bad, and we didn't arrive at SickKids until 9:30 AM. It ended up being a bit of a happy accident that we were late, because E ended up being taken last into Cujo's Room because of his RSV diagnosis to minimize the chances that it might be passed on to other patients. We were given a temporary private room, and we ended up being there until 7 PM. In just one day, E had a dose of vincristine along with his lumbar puncture, and was administered two new drugs, cytarabine, and cyclophosphamide. We were also prescribed 6-thioguanine, or 6-TG to bring home. This is an orally administered medication, but since E is so young, we must dissolve the tablet inside a syringe filled with water and get him to drink it. He needs a 2 week course of this drug, administered on a nightly basis. Since we ended up being so late, we put out an SOS to my mother-in-law. She had already stayed over the night before to get J off to daycare, but she graciously came back out to pick him up, watch him, and feed him until we got home.

The view from our room, facing East toward downtown Toronto

January 18th and 19th were more chemo days, but we only had to go as far as our satellite hospital. There, E was administered a dose of cytarabine.

January 20th was another chemo day, but our satellite hospital's POGO clinic isn't open on weekends, so we took a trip to SickKids. This was a quick trip, and we brought J with us. While we were parking the car in the underground garage, J exclaimed "this cave is really cool". It's probably the second time he's ever been in underground parking, but I guess, yes, it probably does seem like a cave.

January 21st - 23rd were rest and recovery days for E.

January 24th, 25th, and 26th were more chemo days at our satellite hospital, where more doses of cytarabine were administered.

January 27th, a Saturday, was another trip to SickKids, but they needed us there earlier. J has a dance class on Saturday mornings, and our appointment overlapped with his class. We asked my parents if they would mind coming down to help us out. My sister who lives in British Columbia happens to be in town right now, so it would also be an opportunity for J to visit his aunt. The 3 of them drove out, took J to his class, had a visit, and treated him to lunch at McDonald's. At SickKids, E received his cytarabine, and had his blood tested.

The levels are dropping, so now we wait and hope he doesn't get sick, or require a transfusion. Save for a couple more nightly doses of 6-thioguanine, the aggressive portion of Delayed Intensification II is now over.

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