It has been three months since our last update. 

I am writing to beg for your prayers again. 

We’re just not sure how Hillary is doing.

She had been working so hard to get to the Easter long weekend. We were celebrating -– her last blood test showed normal blood levels for the first time in her life, with a hemoglobin of 127, platelets at 239, and normal neutrophils at 2.5. 

But at midnight on Good Friday, Hillary got the chills. A 39.0 fever spiked immediately. We tried to cool her down with cold cloths and talk ourselves out of it, but it was happening. By one o’clock, we ran to the car in the pouring rain. Blue lightning lit up the sky on the way to CHEO – mirroring exactly how we were feeling inside. I was trying hard not to vomit watching Hillary burn up. 

Hillary’s ER blood test came back with a hemoglobin of 127, but her platelets took a dive to 198, and her neutrophils shot up to a record 6.8, indicating infection. 

The ER was absolutely PERFECT. I didn’t think that was possible. They triaged her immediately without delay and placed us in an isolation room. Our Hematologist Fellow ordered every test under the scorching sun. Blood cultures from one arm were sent off to the lab while they placed an IV in her other arm for a possible transfusion. They gave her Tylenol, took a urine sample, swabbed her throat for strep, and we willingly agreed to swab her nose for 12 viral illnesses, despite us living in strict isolation. This was her first nasal swab ever, and we’re glad her nosebleeds did not return. 

Hillary tested negative for everything. 

We opted for a broad-spectrum antibiotic by IV to prevent sepsis (in case a serious blood infection was looming while the cultures went out for testing) and we were home by sunrise. It’s now three whole weeks later and she’s still not back to her baseline. SO many things are reminding us of those early days. 

She’s worried. 

We are reassuring Hillary that the fever is a good thing – it means her body mounted a normal response to something, like it should. We can only wait for her next blood test and pray it’s stable. We go again in two weeks unless she becomes febrile. I’m worried that we’ve missed something dental and I have her booked in a couple weeks, but….

Bone marrow failure is literally invisible until it’s life-threatening. Hillary had 4 platelets when they called us on Mother’s Day to come in for several blood transfusions. We had no idea she was sick. 

We’re NOT going to ignore current facts. Which I’d like to make crystal clear, as usual. 

Declining platelets are typically one of the first indicators of relapse with Aplastic Anemia. We don’t expect many people to understand it –- that’s why I’m writing.

Her body temperature is elevated. 

Things could happen really fast for Hillary. 

If she IS relapsing, she will need many blood and platelet transfusions just to get her to a bone marrow transplant in Toronto. That is ONLY if there is a PERFECT 10/10 match ALREADY in the registry for her. She can’t have a partial match. 

It takes up to eight weeks to get registered to be a donor. We have no idea if Hillary has ANY matches. They will not perform a search until Hillary is critically ill. The matches change. They get used by those in critical need. 

If there IS a full match there, will they agree to donate? Can we keep her free from infection with zero antibodies? What if there is no match………………..

I can’t lose her. I’m not strong enough to weather that storm, I’m just not. 

Sorry, but hope alone is NOT a good strategy for AA patients.

Hillary has very clearly instructed me to fight, fight, fight. 

A transplant will CURE Hillary of her AA and PNH. Watch the video.

Finding a match is literally the only thing we need to do. 

We can’t say at this time that Hillary is relapsing based off just one test, but we can’t ignore the unexplained fever. We must also keep in mind that 198 is a suitable (but low) number of platelets, but…. why the fever? Was this a neutropenic fever? Cause if it was, it’s coming back. 

Hillary’s fever has not returned but she developed a serious rash on the tops of both her hands after the IV medicine. She said she felt her hands drying out as the IV med went in. We beat it with ice and steroid cream but I just can’t stop these things from happening to her. She continues with her diva behavior of insisting on cotton clothes, carefully screened organic products, and purified air. 

Despite living in a bubble, she has more leg bruising, indicating platelet destruction. Her headaches have been out of control. She meets with Neurology next week. Her nummular eczema persists. She meets with Dermatology next month. Her armpit is swollen. She needs a biopsy. Her PNH is growing, and it’s deadly. Her hair is thinning. This can develop into aggressive cancer (MDS or AML) easily. She’s lying here beside me now with ice on her hands and heat on her head, asking me to take her temperature. Her scoliosis brace on the chair. She needs more radioactive x rays soon.

She feels off. I’m listening to her. Holding her tight. 

Alyssa. 

Alyssa is thriving. Her spinal fusion surgery experience was one of the easiest things we’ve ever done. It does not feel like she had invasive surgery. It feels like a repair. A correction. A life-saving gift. Her back was not bent over, it was twisted sideways by a whopping 70 degrees. Millions of people suffer their whole lives with scoliosis pain and her pain is now all gone. Alyssa is so very grateful. She’s back to feeling as beautiful as she looks. She feels so lucky, and she should. 

You will see both girls, and speak with them, and never know the heartache they carry. Good for them. They know how to push forward. 

Hillary does not look like a child with a rare presentation of a rare disorder. 

We keep trying to move past it like the other AA kids but, it’s just not the same journey. I’m so glad we’re sharing it. It’s not fair for this child to feel so helplessly ill so often while the blood stain says she’s just fine enough.   

Nah. This can’t be ignored. 

I can’t just be calm and surrender all to God’s will. 

Be graceful and still. 

It’s hard to be graceful when you’re begging for the blood of others. 

There are cures and I want them. For everyone. 

A fire has been lit inside me again. Hillary wishes to do more. She’s not doing it just for her. Her heart is pure and she knows this is the right thing to do. Because maintaining a robust national blood inventory and organ and stem cell registry benefits all Canadians — even 11 year old little girls. Can you believe WWE Pro-Wrestler John Cena started following Hillary due to her advocacy? 

Please God, let people come. 

Please share our invitation for our Inaugural Ottawa Mother’s Day Stem Cell Drive at St. Francis Xavier High School on Saturday, May 10, 2025 from 11:00 am to 2:00 pm. Please make an effort to reach out to someone you know age 17-35 who may be interested. They can join for free, online, in 10 minutes. If you can’t get swabbed yourself, come and grab a kit to give it to someone who can.

This only works if someone saves her. 

I’m looking for that someone.

We never expected to be here. It is our privilege to be in a position to help others with acts of service in honour of our daughter’s fight for life. 

She wants to stay. 

Please help her. 

#StartWithHillary