It has been eight long weeks since our last update, and we have incredibly uplifting news to share with all of you who have invested hope in Hillary’s journey with Aplastic Anemia.
Hillary’s bone marrow biopsy and aspirate came back last week as 60% normocellular.
That is, not hypercellular (too many cells which could indicate cancer)…nor her previous 20% hypocellular (too few cells which means her aplasia persists).
This one is…normal.
Her blood test showed a rise in all three levels for the first time.
Her hemoglobin finally broke 100. (normal 110 to 130)
Her platelets grew from 114 to an at all-time high of 135. (normal 130 to 380)
Her neutrophils rose to .9 after a dip to .8. (normal 1.5 to 8.0)
All of the additional genetic tests came back negative. No dysplasia was detected. Her nosebleeds have stopped. Her pentamidine IV infusion has been stopped. Many other side effects are lessening more each day.
It’s considered a remarkable success thus far by her team of doctors. It was all smiles at our last visit, seen through kind eyes.
We truly feel one step closer to the miracle we are all desperately praying for. Her blood levels are rising despite the fact that she is weaning off the medicine (which is no longer at a therapeutic level). This is…perfect, essentially.
But, those neutrophils. They’re still so low.
Her overactive T-cells continue to attack and suppress her bone marrow, preventing the manufacturing of the one thing she desperately needs. Protection.
Hillary still has a long journey ahead before she can ring that remission bell. Upon inspecting the bell at her last visit at CHEO, she really thinks it needs to be fastened more securely to the wall before she gets a hold of it.
We agree completely.
First, she still has two more wean stages (30% reduction every 2 months) before she is completely off the cyclosporine immunosuppressant.
The day that she finally stops will be so incredibly nerve-wracking. This is the next possible crash point in this marathon towards remission. If her T-cells realize they’ve been tricked, they attack and destroy all of her blood production lines. We have to be able to recognize the symptoms (petechiae, lethargy, pallour) and be ready to go in at the drop of a hat.
According to her medical records, her last dose of medicine will be on December 24, 2020, Christmas Eve.
My head spins. How can that possibly be, to the date? What a gift that would be.
If she can hold — and she is a miracle so far — we undertake the task of having her numerous immunizations re-done since they’ve been wiped out by the immunotherapy. Her doctors may choose to test her blood for any remaining useful antibodies before beginning the vaccination schedule, or they may just give all of them again for good measure.
Then, the six-month mark following the cessation of medication is the next milestone to be achieved. That will mark two years of strict isolation. Hillary’s 8th birthday.
Maybe then she can ring the bell.
But she may be doing so with a new normal.
We are deeply grateful for the incredibly thorough, yet, laissez-faire approach of our lead Pediatric Hematologist/Oncologist, Dr. Robert Klaassen, who represents an entire team of professionals at CHEO working together, with us, to ensure our child’s survival. They are all quite impressive.
We all feel confident that the best treatment path was chosen for Hillary.
She goes back in one month for a dentist appointment and blood level check. She currently has four loose teeth — and a lifetime of dental work ahead of her.
We continue to use social media as a support system to help us navigate this rare condition. Every single human experience offers a sobering and valuable lesson on how we should move forward with this rare disease.
When we got home from the hospital last week, we learned that a fellow warrior lost her battle with AA. She was 7-years-old, and five months into immunosuppressive therapy. She had .9 neutrophils, just like Hills.
She’s why I won’t let up.
Hours later, an 8-year-old friend, Evie, had her only 10/10 match in the world (from Germany) pull out the day before transplant. They are now literally waiting for someone to join the registry so Evie can survive.
That someone could be you.
You could actually be Hillary’s match.
Our doctors affirmed last Wednesday that she might need one someday. There is just not enough documented evidence that this treatment can provide life-long remission. Bone marrow failures are extremely complicated, particularly the pediatric and idiopathic ones, like Hills.
But wow, have you seen the research being conducted in the area of T-cells at the moment? Daily studies are being published in mainstream news. In many ways, we feel extremely fortunate. The silver linings don’t go unnoticed or under-appreciated.
Still, not knowing if Hillary has a match is the most helpless feeling I’ve ever experienced. And it’s constant. We inquired again at our last visit and it’s just not the type of information we are entitled to have. It’s hard to sit back and wait.
Sooooooo… we won’t wait! We’re go-getters!
We vowed to #StartWithHillary and never stop helping to promote and diversify the global stem cell registry. We hope our continued efforts will help us secure a match in Canada, since the transportation of stem cells across borders has changed drastically since COVID19.
Awareness is everything. In helping ourselves, we are helping countless others. We are leaving a mark. Making a difference. It’s something to be proud of.
We just want to pack up the camping trailer, fill it with #getswabbed kits, and travel across Canada…going door to door. But Hills is not well enough. I can’t shrug it off or deny it.
So we do what we can, from home. Hillary’s offer to pay-it-forward to The Make-A-Wish Foundation continues, as they have extended their awesome #TheGreatMAWCampout for another week. The girls are busy making videos, and are always bouncing around in the trailer. I can’t help but notice these experiences keep opening up. These chances for the girls to shine. If you have 5.15 minutes, please watch Hillary’s latest video to thank Make-A-Wish Eastern Ontario. She makes one of these videos every, single day. Thank you for continuing to donate so that others can have a chance at experiencing some real magic, like Hills did.
Alyssa celebrated her 10th birthday by organizing and leading her own Zoom party with six of her BFFs. They painted together, played cards, ate cupcakes…saw each other. It was perfect in every way, and we are so relieved she didn’t want a parade. Or a trailer.
Together, Alyssa and Hillary represent hope. They see the darkness, but rise above it, every time.
They never let it change them.
I’m trying my best to be as strong as they are.