It has been eight weeks since our last update. We took one single photo of Hillary on the day she got her blood test results. She is beyond grateful to still be in stable recovery – hemoglobin 127, platelets 227, and neutrophils 1.8. We share her gratitude for all of your continued support.
Before gratitude, there was pure fear. Hills experienced four straight days of minor petechiae, which she hasn’t had since diagnosis. Her poor little face when she saw the bloody line on the inside of her arm on the morning of Valentine’s Day. Her heart broke. She cried. We tried our best to fix it with love, McDonalds, and Encanto. It worked.
Accompanying symptoms drew a concerning picture – noticeably thinning hair, fatigue, and persistent headaches. Weak in the knees, we re-packed our bags and contacted CHEO to request some additional thyroid testing, since she has had abnormal, but resolved, results previously. We were supposed to wait another month for blood work, but we felt we couldn’t even wait the estimated time for a home-visit and took her into our local Dynacare, first client of the day.
We were very worried about Hillary.
She also had her second Pfizer COVID vaccine two weeks prior and we could not possibly know if it might have triggered a drop in platelets like it has for others in our rare disorder community. We have a virtual appointment with CHEO in mid-March to inquire about a possible third shot, her pending biopsy, and her long-overdue PNH blood test. We’ve been advised to seek out a PNH specialist somewhere in Canada. I attend as many free virtual health conferences as I can. We have an appointment tomorrow with an MD to try and set up home-care, should Hillary require treatment. Her thyroid has come back as normal. The possibility of transplant lingers… always.
The fight for our child’s survival is real. I believe it will get even more challenging.
The United Nations (UN) adopted the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” recognizing the over 300 million people and their families – just like us. The Resolution focuses on the importance of access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.
It means absolutely everything to me. I want it printed and framed. I wish I could hold it up like a shield and have it rain down medical supplies, sports equipment, musical instruments, swing sets, swimming pools, assistive technology, and library books onto the vulnerable people around me right now. I had the best childhood, ever. I so wanted the same for my kids.
Last year, Hillary missed so much virtual school due to illness that she could barely be assessed. Last week, she got her first report card ever filled with As and Es. She worked so many nights and weekends for those. Without the accommodation of an established, free, virtual school….Hillary would not be thriving. We’d all probably be in big trouble. We can only remortgage the house so many times.
I am forever indebted to the Ottawa Catholic School Board (OCSB) for their unsurprising and unabashed commitment to the most vulnerable children in our community. Many of the girls’ virtual friends have spoken of illness and hospital visits over the past three years. I worry about how Hillary’s complicated journey impacts her peers. A child’s wellness affects the whole family. Hillary’s French teacher, Mme. Clement, donated her rare type O blood in Hillary’s honour last week. She said it was easy. She saved a life that day.
Tomorrow is Rare Disease Day across the globe. February 28. I contacted the CEO of the Canadian Organization for Rare Disorders (CORD) about illuminating the Peace Tower on Parliament Hill in Ottawa to commemorate the occasion, and we tweeted Justin Trudeau but… he’s been very busy. It looks like only the CN Tower and the Edmonton Bridge will participate with beautiful neon lights, along with Tokyo and Paris. I will try very hard for next year. It should be safe by then.
Hillary is still set to ring a very special recovery bell. I send #StudentsSavingLives emails every single day. I’m still waiting to have that glass of wine. We have not let our guard down.
We aren’t looking forward to getting back to the way things were.
We are totally different people and our world is forever changed.
We’re ready to face the future with the same determination this family has had since day one.