It has been four months since our last update and PNH test. I am elated to share positive news about Hillary’s bloodwork this Mother’s Day, despite there being a great deal of concern surrounding Hillary and her care — hidden as truth in the words not written here. 

First, the best news ever. 

Hillary’s PNH flow cytometry showed further reduction in clones from 72% to 58% to now 47%! Our wish came true! Once again, Hillary is extremely rare in her presentation and she is aiming for that elusive clone reversal which “never” happens. We are dreaming of 36% for her next test in June. Research indicates it can only possibly come down 10% every six months. If it’s higher, plans shift. 

We are OVERJOYED to be trending the right direction.  

As you would suspect, Hillary is feeling MUCH better having 30% more access to her own blood. Better than ever, she says. She reminds me often that the year she was misdiagnosed was her absolute worst. Things have improved significantly now that she’s made many lifestyle adjustments. No more pushing to exhaustion during intravascular hemolysis. She’s listening to herself more and it’s working. 

She has the most pronounced golden retriever mindset I’ve ever seen, most often using singing to get through the shocks and blows that come with chronic pediatric illness. There is no darkness around Hillary. She sings it away. 

Hillary’s blood test last month was also wonderfully stable with her hemoglobin at 135, platelets at 252, and neutrophils at 2.6 – a personal best! She rebounded from her first winter cold and has some of the best levels around for someone like her. She spent twelve weeks in the pool house, grounded and free from concern. I slept in an armchair and made over 2,000 trips back-and-forth to serve the Fresh Prince back there. Ronald McDonald House should be a breeze.  

She is so. grateful for her improved blood. 

Hillary’s haptoglobin remains critically low at 0.1 but her liver LDH (lactate dehydrogenase, liver enzyme) is coming down from 426 to 320 to 302, indicating less red blood cell destruction and further reducing her chances for a blood clot or stroke. Another signal to Hillary that she is doing an excellent job modifying her diet and lifestyle. Her INR (International Normalized Ratio) and D-dimer are also normal – two very important indicators of thrombotic health for PNH patients during clonal evolution. 

We celebrated. We are so grateful she is finally receiving the correct tests for the first time. Her new MD is highly responsive and incredibly more knowledgeable than her former pediatrician. Still, as the PNH clone decreases, the chances of developing cancer (MDS or AML) increases and we can’t ignore reality. Hillary goes for more bloodwork and an ultrasound next week as weird things continue to happen to her. Some would say rare. 

Hillary’s headaches which began during treatment are still quite prevalent and we fear she will never escape them, but they have improved. She has cut down dramatically on the Tylenol suspension fluid to further reduce her LDH and….it sucks watching a 12-year-old push their pain tolerance amongst a sea of stuffed animals. 

Hillary currently has three different skin infections, all requiring a different steroid, which is most likely wrong, since they were prescribed by three different specialists. 

It’s in her blood. It always has been. Her leaky gut is to blame. 

Everything seems to be working fine but her blood and bone tell a different story. Her Vitamin D is too low despite supplementation, her folate is now way too high, her zinc intake has depleted her copper levels, and she should be taking Lactoferrin, Calcium, and GLP-1 with red light therapy but…. Hillary wants the direction of a PNH specialist to advise her. I have to 100% agree. I almost gave her celery juice once. Again, that sensitive Vitamin K topic comes up that I’m not allowed to discuss. 

There is no desire to make Hillary healthy again. 

Just treat after things go wrong. I understand now. 

I am so fearful of making a mistake with Hillary’s wellness without the direction of a specialist. Even Naturopaths are hesitant to advise us. “Thank God for AI” is the oxymoron of the millennium. Hillary doesn’t make ANY new moves without consulting several digital sources through a PNH lens.

We remain in no man’s land. 

We’re online. 

Last week, Hillary woke with signs of sinusitis for the third time this year without an underlying cause, requiring guidance from the ER. Is it a sinus infection, allergies, or a Cerebral Venous Sinus Thrombosis (CVST) which mimics sinusitis and is common and deadly for untreated PNH patients? We’ve been told to watch out for an imminent blood clot and that she needs blood thinners. 

It was totally resolved the next day, which worries us more, but each time she beats something, we grow more knowledgeable about what she can tolerate. Mostly grateful to just be able to stay out of the hospital. 

Hillary’s friend, JP in the USA, was diagnosed the same year as Hillary and also developed a high PNH clone. He began the complement inhibitor recently due to seizures and relapsed with Aplastic Anemia so he is now Day+33 into a transplant to cure both conditions and we are watching with baited breath to see how he does. His donor did not consent to donating bone marrow – only stem cells. Like I’ve said before, it’s A LOT to ask of a stranger.

St. Mark High School holds a blood donation event next week, where 10 students are bravely donating blood for the first time. Those donations go to children like my Hillary — to save her life. Our advocacy continues. 

We conversed again with CHEO President Dr. Vera Etches last week to advocate for access to an expert through the hospital but the process is too slow-moving while kids’ cancers grow. We are still waiting to hear from the Patient Ombudsman. It’s been 8 months. 

Children should not have to wait for medical care while new hockey stadiums are constructed. We should be able to figure this out. Resources should be re-allocated urgently to address Ontario’s obvious health care crisis – at least for our youth. Accepting suffering at a young age should never be our goal. The pediatric orthopedic surgery backlog is appalling – leaving children to mentally struggle with their skeletal deformities for years.

Trust me. Alyssa’s gratitude is apparent for jumping the 2-year wait list, and she is the happiest she has ever been in her life, with a bright future. Our bond has never been stronger now that she sees what we’ve been up against, and I’m the luckiest Mother in the world to hear “I love you” from my kids every single day. 

Under our guidance, Hillary wrote a detailed Patient Statement to be placed in her medical file to explain the challenges she has had navigating her care with Hematology. Waiting until after an incident to advocate is just not in my care plan for Hillary. She very much enjoys her time visiting the many other doctors at CHEO helping her on this journey, but she is now officially worried about her rare disorder care due to recent events. It’s no longer just us who have concerns. 

We just can’t escape this spiral, no matter how positive we all remain. 

Sometimes I think ….it’s after us. 

Deliberate and intentional. Unwelcome and relentless. 

It disguises itself as bad neighbours, barking dogs, new viruses, and deception.

It goes after my work, my family, my dreams. 

This nothing…that wants my child’s blood.

.

I don’t think this nothing knows what it’s up against. 

Hillary is a warrior. 

Today is Mother’s Day – a pretty special day around here. After being denied our first request for a blood test in 2019, Hillary was rushed to the ER at 12:17 am on Mother’s Day for several hemoglobin and platelet transfusions. It was the day life was infused back into our daughter.

Thank you to Canadian Blood Services and the blood donors in this city. The irradiated pooled platelets Hillary received from numerous screened donors started her second chance at a childhood. Gave her life. 

I just knew something was wrong again with Hillary last Mother’s Day so naturally, I panicked with another bone marrow drive. Thank you again to all those who made that day very special. We found out about Hillary’s PNH misdiagnosis right after being in the press again from that event, and this community’s support has helped Hillary stay in the light. Where she belongs. 

We will celebrate Mother’s Day this year by setting up the Make-A-Wish trailer and having a picnic by the pool — Hillary’s favourite health tools. Their campaign this year is “Wishes as Prescriptions” and that really resonates with us as we search for a miraculous cure for our daughter. The gratitude pours out of us and we hope you all know we never forget. 

This is why I wear my ribbons. Wherever I go.  

Red and white stripes for Aplastic Anemia. Purple for PNH. They are a reminder to everyone that I am in the middle of something that I haven’t figured out yet. That I am fighting something unseen. 

A bright signal that I need your attention. 

Your awareness. I need your help. 

As I review this post before hitting publish – edit out my true feelings (like plentiful swearing), cover up for the many indiscretions of others, weep over the state of what’s to come next….second-guess myself and what I’m doing causing such a media frenzy….

…I hear Hillary’s voice, upstairs. Singing. 

It’s a child’s voice.

It has no fear in it. 

I will give my last breath for her to get one more step ahead with this. 

Just hold on to me, Hillary. 

Hold unto me. 

#StartWithHillary

Please watch our family present as a Delegation to the Board of Trustees on March 24, 2026 to show our gratitude for Hillary’s virtual school. We start at the 5:44 mark.