It has been one month since our last update. Hillary’s monthly appointment was easy on her body, but hard on the mind and spirit of our family. We don’t have answers to all of our questions and are now bracing for an unexpected change in her treatment path.
Hillary’s hemoglobin rose from 104 to 111, but her platelets fell from 140 to 136, and her neutrophils are back down from 1.4 to 1.0. Still below normal on all three cell lines.
Despite her slow partial recovery status, the decision has been made to stop Hillary’s immunosuppressive therapy six weeks earlier than planned. Her last day will now be on Friday, November 13 after an early-morning blood test in the general lab at CHEO, bypassing the extra-sterile Medical Day Unit (MDU) for the first time. We pray that her blood levels are up and that the appointment goes smoothly.
We are counting down the days. The doses.
We might be looking at a new normal for Hillary — or may be headed to an allogeneic bone marrow transplant — is what we were told by our lead hematologist. The only thing that is clear is that it’s quite unclear.
Both scenarios leave Hillary vulnerable heading into this winter.
The day we got home from the hospital, a hawk snatched one of the baby doves off the feeder as I stood outside. I watched them struggle, feathers everywhere. The baby dove looked me in the eye before it slipped through the fence.
There are still many unknowns. Hillary’s overlapping Paroxysmal Nocturnal Hemoglobinuria (PNH) clone is still of concern but will not be retested since she does not have observed current hemolysis (breakage of red blood cells) and the test is costly. We’re committed to keep pushing for this data to ensure Hillary receives the proper treatment should this condition progress.
We requested a thyroid test due to some concerning symptoms Hillary has been exhibiting and the results came back outside of the normal range (more overactive T-cells) and we are still anxiously awaiting an interpretation from a doctor and how it relates to her idiopathic blood disorder and her current health.
We have no idea if we have a stem cell match in the Canadian registry.
Nevertheless, we are so excited to stop this dreadful-tasting, life-saving, cyclosporine medication which Hillary has taken twice per day for the last 18 months. We have to take this step. We long to see the side effects subside — stomach distention, bone pain, fatigue, gum overgrowth, feet peeling, weight gain, excess hair growth, and dangerously high kidney and liver levels. It’s been hard on her cute little baby body.
But will stopping the medicine also stop her blood production?
We have to believe this will work — on November 13.
We need you ALL to believe.
Her blood levels are on an upward trend. Her bone marrow biopsy showed undeniable improvement. Her creatinine, urea, and ferritin levels are improving drastically with each monthly blood test. Hillary feels happy and healthy. She is no longer sick on a daily basis.
Blood research continues to advance at a rapid pace. It’s astounding to read about how far we’ve come from the first attempt at a blood transfusion back in 1666 between two dogs using a goose quill, only to have it banned by science — and religion — for a hundred and fifty years until the discovery of blood types.
Last week, they announced the first ever at-home pill treatment for Myelodysplasia (MDS) — the blood cancer that Hillary is now at life-long risk for since undergoing immunosuppressive therapy.
I’m still not sure if we are lucky or unlucky.
I think it’s more…we are the lucky unlucky.
Virtual school is working beautifully. Halloween at home was perfect. We are still able to afford and get food, medicine, and other necessities completely contactless.
If this treatment works…my God, I just might believe again.
We still don’t know when Hillary will ring the bell. I’m still waiting to taste that wine.
I can’t believe there are only four more days left of Hillary’s medicine.
The doves keep coming back.
The hawk is still here.
On Friday morning, Hillary and I will wake up early to get to the blood lab first. We won’t sleep the night before. We’ll listen to JUMP 106.9 on the way there to laugh at the call-ins and free our minds. We’ll meet Nana and Baba in the parking lot, as always. We’ll race home to Alyssa and Daddy to see two huge balloon AmongUs characters that we ordered from Brad the Balloon Guy. We’ll eat East Side Mario’s takeout for the first time in a year with the gift-cards Glenna gave us and move our mattresses into the living room for a movie-slumber party. The Great Make-A-Wish Campout continues.
On Saturday morning, Hillary will sleep in for the first time in years. No more medicine.
We will never be the same. We are praying for survival.
Please pray for Hillary.
Thank you for your collective forbearance respecting the current pandemic. For helping keep our hospitals, schools, and food chains working. For donating blood. For spreading the word about joining the stem cell registry.
Little baby Boston can’t find a match.
Neither can Olivia.
They are waiting right now.