It has been two months since our last update. I have no new blood test results to share for the first time in two years. Hillary is in the best health she’s been in since before this nightmare began. She is just two years older now.
Her third annual biopsy to determine cellularity is deferred. We are undecided if we will take her in for May bloodwork to check her levels. Looks like we will be operating on faith until things are more stable in Ottawa.
Last week, I read a new Harvard peer-review journal forwarded by our primary hematologist. The findings were a terrifying reminder of the roller-coaster we’re on. Of the 314 children included, 29 died during the five-year study — six died on the first day of treatment. I remember our nurse saying, “I’ve never done this before.”
Of the 285 survivors, 110 of them needed second-line treatment within five years, in the form of another round of immunosuppressive therapy or a transplant.
Many of them at 24 months.
That is exactly now.
Of those 110 children, 68 underwent an unrelated donor transplant. Sadly, 20 of them died.
The journal concluded that event free survival is significantly longer with an unrelated donor transplant over a second round of immunosuppressive therapy as second-line treatment, but standards differ greatly around the globe. Hillary is also part of a research study — I can’t let her go down the wrong path just because she is part of a specific cohort.
Which brings me to…here. The exact same feeling of desperation I felt in that hospital armchair two years ago when I opened a Twitter account on my iPhone and created #StartWithHillary. I knew then that this was for life.
The journal kicked me so hard in the stomach that I decided to do something about it. In just two weeks, I am nearing completion of the first ever Global Aplastic Anemia Registry: A Voluntary Patient Database for Aplastic Anemia (AA) History, Treatment, and Outcomes. This time, I’m in an uncomfortable IKEA armchair in my room while the kids take over my bed, night after night.
I’ve sourced two similar online registries (for COVID-19) in other countries, and it looks like I can pass an ethics and privacy check with disclaimers. I have an informal steering committee ready to review and support my launch. I’m aiming for respondents across the globe thanks to the power of the social media networking groups I belong to. And yes, I’ll be tracking COVID-19 and vaccination responses. Maybe I can even get a research grant so I can stay home with my family. I haven’t walked past the end of the driveway in six months.
The last big database I created examined Educational Standards of Personal Support Workers (PSW’s) in Canada. The findings were incredulous. I used to work on contracts so I could stay home longer when the girls were born.
Looks like I’m high-functioning in a crisis. Never knew that.
Monday, I have a phone call with Canadian Blood Services (CBS) to discuss my other brainchild which came to me as the third wave washed over the city last week. A real phone call. I hope I make it through without choking.
I’ve literally been frozen since the pandemic began in terms of promoting diversification of the stem cell registry. Little tweets here and there. Most of the time, I find it too painful to share stories of others searching for a match. But, I think I finally have a sustainable idea that can help save lives, that doesn’t include Drake.
I’m excited about this one. I’m writing it into existence here.
Check this. Every high school student in Canada must complete 40 hours of community service hours in order to obtain their high school diploma. Pre-approved activities range from coaching sports teams to tree-planting to reading to seniors. During the pandemic, the hours in Ontario have been reduced to 20 in order to graduate, and in-person volunteer activities rendered impossible during lockdowns.
What a beautiful opportunity to introduce the idea of joining the Canadian stem cell registry as service to your community.
How many ethnically diverse 17-18 year olds in this country would be willing to maybe watch a video, take a quiz to determine eligibility, engage virtually with a real patient…before deciding to become a potential living hero? I’m hopeful CBS will offer these students the same comprehensive transparency and marketing genius they apply to everything else they do. They are world-class.
The part I like most is that it’s completely voluntary for these students. That’s critical, especially for the follow-through when it comes to actually donating if called upon. It’s a personal decision, and one that should be considered carefully. In Germany, ALL the cool kids do it.
When the Ottawa Catholic School Board (OCSB) agreed last week to allow participation, I was elated. Talk about putting the dignity of the person above ALL else. Setting the bar at the highest level, as usual. I can’t believe they even got back to me during this busy time. We danced in the basement and talked about all the fun things we could do for students over the years. Hillary wants to gift students this blood-red, fidget-putty from a local company, and I agree it’s perfect.
The only thing I seem to be able to do is fight for Hillary’s life.
Today, Hillary said, “I’m so proud of you.” Her smile was huge and her eyes were bright and she said it in her lower, slower voice and with so much love as she was swinging on her basement swing with Alyssa. Then she repeated it to me louder, with a little laugh at the end, like she really meant it. Tears welled up in our eyes. This is going to save lives.
This is my destiny — it would appear.
Hillary’s destiny is yet to be fulfilled, I hope.
Hillary is exceptionally gifted. Her light shines too bright. It makes me sure I’m going to lose her. Ottawa Councillor Diane Deans asked Hillary to participate in virtual International Women’s Day last month, and it again demonstrated that Hillary resonates. She still emphatically wants to be a world-famous singer. After three weeks off virtual school with no visible improvement in headaches, our Naturopathic Doctor suspects her constant singing could actually be contributing. It’s been a breakthrough, let me tell you. Our neighbours are about to get a taste of why, with the camping trailer going in the backyard this year. xo
Make-A-Wish Eastern-Ontario honoured Hillary again this year by asking her to be the Spokeschild for the 2nd Annual Great Make-A-Wish Campout in June. They say it’s for life, and we agree. She will share the adventure with Ollie, who just got his wish after an urgent, life-saving, haplo-identical sibling transplant during the first wave — and he has the exact same birthday as Hillary. Their stories are so intertwined, it’s eerie. (olliesbump.blogspot.com)
I still think the hardest is yet to come.
Hillary will literally need a bodyguard for the rest of her life, or at least until there is more focus on infallible PPE. I still fight daily for her terms of care. The things that I vowed to accept are no longer acceptable. Ignoring Hillary’s reality during all stages of her illness and recovery is dangerous and plain selfish — it doesn’t matter if your reason is to bring her the joy she rightly deserves. It creates a harm that can’t be undone.
She doesn’t want to go back to the hospital. We take the highest road possible and it’s gotten us this far. She doesn’t want it any other way. We embrace the many sacrifices we have to make to stay together.
The kids are happy as can be. They game on their laptops all night while talking to their friends on their iPods. JustDance before breakfast and walk laps in the backyard with birds and chipmunks. Pack thermos lunches and sit in the (unused) electric car with the radio blaring. They’ve started counselling and art therapy and complain it eats into their play time, just like virtual school. It’s a perfect mess.
We have food, power, water, and most importantly, WiFi.
Let’s just hope we have blood.
Evolving literature right now around COVID-19 and AA posit that immunosuppression might actually be beneficial in reducing the likelihood of the COVID-19 cytokine storm responsible for ICU intubation — but researchers admit there isn’t enough data. They also suggest Hillary’s immunocompromised body could act as the host in which allows coronaviruses to mutate, hence creating stronger variants. But they wanted her in school.
A pandemic is exactly like a rare disorder — you have no idea what you’re dealing with as you race towards a cure while fighting to survive.
The only way is to put life before livelihood. To truly put the children first.
It will never be fair.
This society keeps ripping the bandaid on and off instead of letting the healing take place, and it’s hard to watch. SickKids Hospital in Toronto is now accepting adult COIVD-19 patients into their ICU. That was our only transplant centre.
Event free survival (EFS) is measured from the start of treatment until the need for second-line therapy, or death. The longer I keep her safe, the better chance she has of surviving.
I can’t have an event.
We’re drifting in the boat in high winds, too close to the rocky shoreline. I wish we were alone in the boat, but there are others surrounding us, causing more waves, threatening to crash us ashore.
I am not fatigued. My guard never goes down.
The only thing I’m tired of is the holes in the armour we’re using.
If you need a reason to start giving a damn….