It has been four months since our last update. I will be as brief as possible. 

We are awaiting Hillary’s PNH test results which have been delayed until January. She had the flow cytometry test done two weeks ago along with other extensive blood work. 

Hillary’s platelets remain high at 234, her neutrophils persistently low at 2.2, and her hemoglobin has been flagged as too high for the first time in her life at 140. We’re not sure what to make of it.  

In the absence of the PNH clone percentage data and an actual specialist to talk to, this means Hillary is either heading towards a truly rare and miraculous recovery like we think she is or heading directly into trouble. 

She is left wondering this Christmas — wishing and praying. 

Much to Hillary’s chagrin, she became ill in September for the first time in six years after letting her guard down with her mask at home. After six lengthy ER visits for basic things like nasal swabs and ear exams, she tested positive for Rhinovirus (common cold) and was given a throat steroid which sent us racing back to the ER with great concern. She deeply regrets taking it. 

After repeatedly getting the “we only do blood” message from Hematology, we took a big step and changed Hillary’s Family Physician of twelve years to try and get better care. Hillary wrote a personal letter asking for assistance, citing her concerns. Our last physician denied our requests for bloodwork and antibiotics. As a result, Hillary’s September cold persisted and returned in November despite her being in isolation — showing clear and concerning symptoms of a bacterial infection.

She was not clearing it. I never even caught anything. 

Her new GP gave her an antibiotic immediately, and her symptoms resolved almost overnight. She is FINALLY better, after months of fighting. Dr. Abdulla was shortly afterwards featured on CTV talking about the importance of keeping kids out of the CHEO ER this flu season. There have been three flu deaths there so far and Hillary sees the news. These are things we must discuss openly. We can’t hide from reality. 

I’m not going to stop speaking up for Hillary. I remain extremely concerned about her presentation. I’m not too tired to do this for her. It’s when we become complacent out of fear that bad things happen.

Five days ago, Hillary’s thumb became severely red and inflamed. Layers of skin peeled off, it became porous and hot to touch, and throbbed when wet. Her belly button then became infected — her sixth recurring infection. Her Hematologist said to proceed to the ER, as it is not “blood related.”

With AI helping us rule out other possibilities, we determined her thumb could be a terrifying “felon” staph infection which cannot resolve on its own without medication. She’s tested positive for staph in her belly button previously. For PNH patients, this can lead to sepsis very quickly. Hillary has had staph in her blood before and no connections are being made. This most certainly IS blood related.

Within one hour of our desperate request for assistance, her new GP has already provided first and second line treatment solutions for Hillary, with close daily monitoring. The first line treatment (steroid cream) is already working. He’s the best thing to happen to our family since this ordeal began. Hillary said he deserves an award. 

We cancelled the co-follow arrangement with Montreal’s Dr. Bienz that the PNH Association recommended due to his inability to provide an impartial opinion regarding Hillary’s prognosis. Our seventh medical opinion ended up being the one we needed. The Ottawa Hospital’s Dr. Sabloff was highly knowledgeable and agreed that more time and testing is needed before starting Hilary on blood thinners. He also agreed that prophylactic antibiotics might better serve Hillary instead of vaccines due to the risk of hemolysis. 

We are so grateful we persisted. We deeply appreciate his educated approach and have requested for a co-follow arrangement with the intent to transfer care once Hillary reaches 18. After meeting with us, both PNH specialists held conferences with the AAMAC and medical advancements are being made every day to advance blood disorder therapies. 

Hillary continues to face numerous stressors. She does so while singing.

She misses school very frequently due to illness and catching up on the virtual work is very time-consuming. There are challenges at home surrounding infection control and…she doesn’t feel as safe as she deserves. She was invited to Christmas Eve mass with her (boy)friend and his family but he’s now sick…so she’s cancelled on him, after buying her dress and shoes. 

Adding to her fret, “someone” at CHEO suggested that “holding bone marrow drives is making her sick” and …. our family hasn’t taken the news too well. We thought Hillary was doing exceptionally well for someone with such a dangerous PNH level — we didn’t know our philanthropy was making her sicker. Hillary thinks it’s absolutely crazy — like telling the Telethon kids its causing them harm to help fundraise. 

The same week in November, St. Joseph High School held a #ProjectSwab stem cell drive, using our #StudentsSavingLives program. Over 160 students joined the registry that day — truly unbelievable in my opinion. It was just the good news Hillary needed to keep moving forward on this journey with dignity. Thank you to all those who made this event successful. 

Following that, Steve and I met in person with the CHEO President and the Chief of Staff. We were finally able to relay our serious concerns in a professional manner and we understand that change is coming as a result of our discussions. Hillary meets with them in person in early January. We are confident she will present her concerns well. We hope this helps improve care for the other 10 Aplastic Anemia patients at CHEO who may not have been granted the proper PNH testing. For all kids. 

I never knew this would take this much out of me. Out of Hillary. Our family. 

Hillary is clinging to the magic of Christmas even though she finally “knows” this year.  We still moved around the Elf on a Shelf, wrote a list to Santa, and will set out milk and cookies. Hillary so desperately wants her thumb to resolve so she doesn’t have to go to the ER. She wants to stay with Alyssa — everyone’s favourite person. 

This year, all Hillary wants is to be healthy. 

If you have a chance to make a wish near a twinkling light, catch a snowflake, or light a candle at church — please think of our brave little Hillary. Please pray for the miracle of healing she so deeply deserves. Please pray that her body finds the strength to overcome these latest infections and that the coming year brings the health and safety she has fought so hard to reclaim. 

She’s asking that you please pray her PNH is at 23%. She said she can manage that. 

There are so many children facing unspeakable challenges this Christmas. We will continue to ask for blood and stem cell donations to bring more hope to those facing life-threatening medical conditions. 

We are so lucky to have Hillary with us. 

Merry Christmas.

#StartWithHillary