It has been two months since our last update and three months since Hillary’s last blood test. We arranged the regular outdoor home visit last week and are once again elated to report that Hillary remains in stable recovery with growing platelets and just-below-normal neutrophils.
Her hemoglobin rests at 120 (from 127), platelets rose to 234 (from 227), and neutrophils dipped to 1.4 (from 1.8). Every day, Hillary feels overall better than the last day — not worse.
We had our scheduled quarterly virtual appointment with CHEO following her blood test where we tried to cover our usual list of quarterly questions. We are so grateful to be under their continued care on this rare path. They’ve scheduled Hillary for more blood work in January and March.
Hillary was issued a letter after her last visit to receive a fourth COVID vaccination due to her immunocompromised status. This past week, we were told it’s a good thing we didn’t proceed as we should instead now wait for the new bivalent booster shot — if we can secure a pharmacist who is willing to issue it to her as a child under 18, safely.
We continue to shield for Hillary.
We have chosen to again defer her bone marrow biopsy, aspiration, and PNH clone test until May 2023 — four years post-diagnosis. We were initially told that she would be sedated for biopsies annually, but standards of care have changed according to the three global marrow failure conferences I attended virtually this year. The rare disorder landscape evolves quickly and without anyone noticing, particularly patients.
A biopsy/aspiration would offer a good snapshot of the marrow functioning in the near future (ahead of a blood test) and would also indicate if her marrow cells have evolved into Myelodysplastic Syndrome (MDS), a blood cancer which would require intervention in the form of a bone marrow transplant (BMT).
Her overlapping Paroxysmal Nocturnal Hemoglobinuria (PNH) clone remains unchecked and if her clone grows to a high enough level, she will need regular, intravenous Solaris infusions to stay alive. Forever. The only cure for that is a bone marrow transplant.
If she relapses with Aplastic Anemia in our care from a virus or infection or injury, she proceeds directly to… a bone marrow transplant.
It’s a lot for me to process. Chronically.
I’ve edited earnestly over the past three years to keep this blog and Hillary’s social media accounts about Hillary specifically, but my health as her caregiver has a direct impact on her journey to wellness.
The last time I wrote, I said I would post again with news about Hillary, fully expecting to report that she was in the hospital relapsing with a fever. I was in THE worst mindset possible and could barely write. Ironically, I was headed for the ER myself.
Steve and I developed a sore throat in February. No stuffy nose, no cough, no fever, no COVID. He was seen by a doctor and treated with Penicillin and it resolved. I took a different 4-day course of prescribed antibiotics, but my symptoms only worsened.
Under the care of my reputable family physician, and after numerous home blood tests, three courses of antibiotics, an inconclusive throat X-ray, and an emergency nose and throat scope by my ENT, I finally ended up in the ER with full body neuropathy, needing a CT scan.
I left Hillary.
I developed a moderate glottic edema in my throat from a “rare” allergic reaction to the antacid medication I was taking to resolve the bacterial infection I was fighting. The neuropathy stopped the day I stopped the medication. I’ve been symptom free for ten days now. After seven months. I was barely hanging on at work. I think I’m better. I’m so grateful that the last (very strong) antibiotic regimen worked, and that I don’t need throat surgery at this time.
I had several angels helping me along the way. Nurses who suggested how to best navigate the ER closures. Neighbours who provided a safe summer space for my girls to play and be free from concern. Family for helping me coordinate Hillary’s Celebration Bell ceremony before I knew I had to leave. Friends for knowing the real me and knowing it wasn’t “just stress.”
My parents. My Mom waited in the ER for hours for me in her PPE while I sat outside. My parents cared for me in my childhood home while I isolated and tested before returning to Hillary. I re-learned so much from them about resilience, patience, and love. I woke up a bit more.
I remembered that the precedent I set for Hillary’s safety can be maintained by more than just myself, when trust is present. My parents have stayed in a bubble since this began in order to be ready for Hillary. They don’t ignore our reality.
Trust is everything.
Hillary left for her first sleepover at Nana and Baba’s house yesterday morning. She waited at the end of our driveway with her suitcase and stuffies and we all hugged and honked. She wore her Stranger Things shirt and pretended she was in 1986 being picked up in my Dad’s coupe. She’s so fun and sweet to be around. She will stay for a few days and do virtual school in my old bedroom and be treated like the adorable Queen that she is. She’s already called and asked to stay longer.
Later this week, we will take Alyssa to her orthodontist to be fitted for Invisalign braces. She is overdue and not smiling for photos. She will then switch places with Hillary and enjoy her one-week staycation with her beloved Baba and Nana. Alyssa is getting ready for life at St. Mark’s next year. She’s so well adjusted and ready.
They won’t ever want to come home.
If that’s the biggest problem we have, I will forever be changed for the better.
Please align the stars to protect my innocent children. They’ve sacrificed so much. Please make it so we can all be together again, just us four. We’re good people. Please pray Hillary’s remission lasts long enough for her to experience just a few more joys of what a childhood should be. She deserves this.
Please just let her be.
“I just want to say thank you to everybody so much for being there through my journey and others, and for donating blood which helps millions of people like me. But we still need blood and stem cells – we also need those,” she said. “It is a simple thing and safe to do. Give blood and get swabbed because it helps millions around the world and it saves people.”
– Read the full Manotick Messenger, August 19, 2022 Edition, by Charlie Senack