We would like to share some good news with our family and friends following Hillary’s journey.
Hillary is showing a partial response to the immunosuppressive therapy after ten weeks. Her platelets grew on their own from 17 to 49 (normal is 130-380) and her neutrophils went up slightly to .5 (normal is 1.5 to 8.0). Her hemoglobin has yet to start increasing on its own (still at 80 and dropping), and another blood transfusion might put her into iron overload, so we are really hoping to see a rise in oxygen this week.
To celebrate, we fixed up her room with an air purifier, salt lamp, bed rails, and her keyboard and she’s back to sleeping in her own bed (with mommy snuggled in close). It gave her back some balance and much needed independence. She is feeling amazing….confident, secure, and happier than ever.
Next week marks the three month mark since immunotherapy began. This is when we discuss options moving forward. This is when we are supposed to decide whether these early signs of blood production are good enough to continue trying with the therapy, or if we should proceed to transplant.
This is when the search for a stem cell donor would actually begin by the hospital we ultimately choose for the procedure — Montreal or Toronto. If you’ve been told Hillary has a match, you’ve been misled. Hillary remains at the mercy of time and the selflessness of some other human being to see if a match will be there for her when she needs it.
Stem cell drives in Hillary’s name continue to be held in schools/universities across the globe — Edmonton, London, Toronto, France, Ireland — giving us hope and encouragement. I personally think it’s A LOT to ask someone to donate any part of their living body, so to see thousands of people mobilizing to hold these events is incredibly uplifting.
Are we headed to transplant? Will there be a match for her? Will they still be willing to donate? Will they pass the physical? Will they be a perfect HLA match? Will they be willing to donate again if the first transplant fails? Will they have antibodies that will complicate the procedure? Will Hillary survive a transplant? All unknown.
We do not have a match for Hillary, but we don’t want one. We want this therapy to work.
If we continue with the therapy, we should see Hillary’s levels continue to slowly increase. She would hopefully start attending school in the Spring when her neutrophils are in the normal range, and she would continue the medication for another year before being slowly weaned off.
If she is weaned off and her levels stay stable, she will achieve remission…possibly lifelong remission with no further complications or limitations. But if her blood levels start to drop from this point forward — over the course of this lifespan — we head to transplant. She may not need a transplant this month, but she may in a year, two years — maybe ten years.
And life? Well, it keeps happening. Alyssa was sent home from school on Halloween with a suspected broken arm and spent the day at CHEO and a couple days at home. The well has finally been repaired and the water has been retested, but two weeks without safe water was ….cosmically disturbing. Winter is coming…..and so is the flu. Please show your love for Hillary by getting the flu shot and staying away if you’re sick. She’ll be the first one to respectfully tell you to stay out of her bubble.
Most mornings, the height of the wall appears far too tall to even try and climb, for me anyways. But the kids….they jump out of bed as if every day was like a gift or something. They rub their eyes not to remove the evidence of sleep but to brighten their view for the fun day ahead. They don’t stop. They are resilient and fearless.
Each day is a celebration of life as we work at essentially surviving this rare illness they call “the beast.”
This is a big week coming up. Please pray for Hillary.