It has been three months since our last update.

I feel privileged to write during this historic time. Thank you for your continued interest in Hillary’s journey with Aplastic Anemia, PNH, and Scoliosis. 

We have quantum jumped into a new reality. Alyssa no longer wears a mask, Steve is back to in-person work, and Hillary continues to reach new milestones. 

After years of steadily falling platelets, Hillary’s latest blood test finally showed platelet growth. We are absolutely over the moon. Another HUGE step towards potential lifelong remission. She has an appointment next week with Hematology. 

Hillary’s hemoglobin rests at 112, her platelets grew to 235, and her neutrophils stayed low at 1.2. 

Her low neutrophils continue to allow opportunistic infections to take hold, despite our mitigation efforts. We strongly believe SUGAR is the cause of her recurrent belly button infections. We know it’s coming from within. If Hillary eats FunDip, her pH (potential for hydrogen) is thrown off SO severely, a fungal infection manifests. We’ve tested it. We always knew sugar was the enemy, but this is unexpected. 

Her body needs to be well balanced and alkaline at all times. I remember when her blood counts dropped after eating a bunch of creamsicles. Pretty sure a green chlorophyll smoothie might actually be deadly for her. They administer saline by IV for a reason.

She must also avoid injuries to her bones (where blood is manufactured in the marrow), which could bring about vulnerability in her bloodstream, allowing dormant pathogens to replicate and take over her largest organ — her skin. 

We really understand now. It’s the dawning of the Age of Aquarius and information is readily available — everywhere. No question goes unanswered by AI except for, why her?

She has cut out the sugar. Again. 

Hillary has also been struggling with nummular eczema on her arms and back — coin shaped lesions which are difficult to treat. When we see one of these starting, I. FREAK. OUT. I simply can NOT have these get infected out of control. My heart aches. I think of Jonathan Pitre every day as I’m scrubbing the tub and the resilience of his mother, who reached out to Hillary and I early on with words of hope and strength.

Hillary works so very hard on her wellness, and I love being her assistant. 

I had our water treatment equipment checked last week to ensure our media screen, UV filter, and softener are in PERFECT working order. I’m so grateful to have clean water and remain forever indebted to Russell Plumbing for helping us make sure. Their website says they care about kids and the vulnerable and they actually prove it with their service.

Again, we feel this rash is connected to digestion. I’ve asked for a consult with a Gastrointestinologist due to some notes on her last spinal x-ray about her abdomen. 

I’m not going to look back in time and say I wish I did more. 

During her last infection, Hillary was prescribed a Tacrolimus ointment to manage the lesions. But, Tacrolimus is the drug used to suppress the immune system of AA patients during IST treatment. The oral form is the same medicine (Cyclosporin) that set Hillary’s immune system to zero, resulting in numerous blood and platelet transfusions for weeks. 

We consulted Hematology who said it would be ok to use the topical form of the pharmaceutical, but Hillary flat out REFUSED to use the medicine.  

Our first three formal written requests for a substitute prescription were denied.

Her rashes got worse as a result. 

After presenting some supporting documentation from the Society of Pediatric Dermatology citing the “relatively new use of this particular medicine for dermatology purposes” (2nd page, 1st paragraph) and that it’s not used for the arms or back — we were granted a common substitute script, Betaderm.

It resolved her rashes immediately. Two days of use, and they are gone, as of TODAY. Maybe forever. Hillary is so pleased she stuck to her convictions. 

My heart absolutely aches with chaos. 

If we had used the Tacrolimus as insisted upon for MONTHS, what would have happened to her blood counts? Are topical creams not absorbed into the bloodstream? Why was I required to wear gloves to administer her medication so I didn’t become immunosuppressed? 

How many other children with Aplastic Anemia (AA) have used this “relatively new drug” on their skin and what happened to them? Did it resolve the dermatology issue? Were there any unintended reactions for the AA patients? 

Did any cute little girls die? I mean, not right away, but later on? There’s no data on that yet cause it’s too new?

Oh. 

Watching Alexis Lorenze on X (Twitter) has been very painful — Please note a graphic trigger warning in the link. She is a young American who has never been vaccinated for anything and then discovered she had PNH. (It hides for years.) In order to receive the life-saving PNH treatment she needed, she was required to receive three routine vaccines as part of the protocol. The results shocked the entire world when she made the mainstream news.  

How will Hillary react to these vaccines if her PNH progresses? She has to take the exact same shots. I know the circumstances are different and Hillary has done well with her other vaccines but why am I supposed to ignore this? Why must I keep quiet and not ask questions? Why is social media the enemy when it provides me with SO MUCH HELP? There is so much immune dysregulation on her Dad’s side of the family (Meningitis, Hydrocephaly, Cancer) that no matter what path I choose for Hillary, it will be the wrong one. 

Please pray that Hillary’s PNH clone resolves miraculously, as it does for many. 

And please, please, don’t listen to the gossip. If they’re talking bad about ME to you, I can assure you they are talking bad about YOU to anyone who will listen. Gossip truly destroys lives. I’m not an anti-vaxxer. I’m not crazy. I’m gonna fight. While she’s still here, asking me to. 

Hillary has accepted her second invitation to participate in a University of Manitoba Health Sciences study, this one about the difficulties she faced while deciding to get COVID vaccines as an immunocompromised child. She will be paid $100 in Roblox just like the last study she did — which was so very cathartic.

Hillary’s last blood test also showed perfect kidney and liver function. She jumped for joy as if she’d won a gold medal on the field. It’s truly shocking considering the amount of toxic Tylenol (suspension fluid) she continues to ingest weekly to manage her chronic headaches. It’s full of sugar. We met with CHEO Neurology again (virtually) who suggested a new vitamin regimen which may help, but Hillary just can’t take the suggested three horse pills a day forever. She tried. 

She’s also worried about the effect this vitamin/fillers may have on her blood.

In my search for more headache help, Hillary visited the dentist last month for the first time in years — MY most trusted dentist since I was 16. Hillary is so pleased to report she only has two small cavities and she is getting them fixed soon. There is NO damage from her treatment and NO interruption of growth. NO cause for headaches. We celebrated with balloons. 

We’ve been doing a LOT of celebrating lately. I haven’t had that glass of wine yet but we’re not TOTAL freaks anymore. Despite being isolated, Hillary is living her life very happily on her terms. You’ll still hear her every couple of days scream, “I love my life!” She tries VERY hard at virtual school despite really feeling the provincial competitive push for attendance this year. It’s making her want to stay home even more and she can’t decide where she will attend Grade 7 — in person or virtual. She has politely asked her family to stop pressuring her to go back. I’m on the fence, like her. Waiting for the storm. 

She has a ton of friends, and there aren’t enough hours in the day to fit in the fun she has. She’s ALWAYS smiling. Always on the phone with SOMEone. I would say she has WAY more socialization than your average kid. We kinda chuckle when doctors feel concern for her lack of interaction. They must not be on SnapChat.  Her life is SO FULL. I can see why she doesn’t want to forgo her wellness. We EMBRACED digital — it was all we had!

We keep trying to arrange get-togethers with friends but someone always gets sick and everyone is just far too kind to jeopardize her health. But Hillary WASN’T going to miss Halloween this year. 

She trick-or-treated for the first time in her life this year with her friends. She went with her three very best friends which she began virtual school with four years ago. They have all moved on to different OCSB in-person schools but they play together every day online and are pandemic besties for life. 

Having the opportunity to escort the girls around on Halloween night together as parents was such a blessing. We’ve shared our kids, our houses, and lives so intimately with each other over the last five years through our computer screens. They’ve witnessed our joy and struggle first hand, and us theirs. One of her friends even wore a mask for her. They are so supportive of Hillary. 

And for the record, Hillary feels safer going door-to-door with her 3M Respirator on than she does risking family visits to the home. Hillary KNOWS her mask works. She’s smart. They work for doctors performing surgeries. For mechanics handling chemicals.

For the vulnerable wishing to avert life-changing illness. My family is living proof that masks work and I have receipts. 

Okay. So that covers AA, PNH, infections, specialists, dentist, mental health… now the Scoliosis. I can’t explain this one. 

We took both girls in last month for their maintenance orthopedic x–rays at CHEO. The night before, Hillary and I slept in the pup tent, staring up at the full moon all night long, praying for healing. As a Cancer in astrology, she is ruled by the Moon and is very fond of it. It gleamed in the fourth floor window at CHEO during her stay and spoke to her and promised her a future. It shines through our window here with the Northern Lights overhead and green and red shooting stars and we can’t believe our eyes almost every single night of the week.

When the surgeon came in, he thought he was looking at the wrong set of x-rays. Hillary’s Scoliosis appears to be completely gone. She’s back to a negligible under-5-degrees of curvature. Basically nothing. 

We haven’t been wearing the brace. We haven’t been going to physio. We’ve been trying to manage her other infections and headaches, and she’s been feeling so guilty about it. 

This gift of miraculous healing is so precious, we won’t squander it — even if it IS temporary. Hillary is committed to wearing the back brace as a preventative measure, and we will resume physio as a matter of priority. There is no question the Schroth method of Physiotherapy is highly effective and the physiotherapists here in Ottawa are skilled and knowledgeable. 

I also need Tina D’Angelo in the lives of my kids. She changed MY life with words of healing and Yin Yoga and weightlifting to the point of enlightenment, and I want that for them. 

Alyssa’s condition has not worsened, however, she still requires spinal fusion surgery. What is done cannot be reversed without intervention. I think it hurts my heart more than the AA does, but Alyssa DOES have an orthopedic history. She was the youngest patient to ever be treated for plagiocephaly at CHEO and we had PERFECT success as a result using a helmet. I wasn’t gonna wait and I fought hard. That’s her right there at 2 months — getting it DONE!

But for her spine, we are still waiting JUST to get on the waitlist. Our doctors agree that it’s a TOTAL TRAVESTY but the resources are scarce and funding has not been granted to provide adequate care for the children in this city seeking it. Like my daughter and her friends. 

And it’s only getting much, MUCH worse. 

People say if I want change, I have to get in there and work at it myself but… I’m barely hanging on to my own job and life. I’ve supported the petitions but I have NO IDEA how to help this problem other than tweeting at Doug Ford, and I’m not allowed to use Hillary’s likeness to discuss politics so she won’t let me fight. 

I told her I can’t keep Quiet much longer. Alyssa needs me to work on this.  

Alyssa is thriving at St. Mark’s High School with her mask off. Ironically, her teacher wears one every single day. What a beautiful example. The school ensures an air purifier is running in all classrooms and advises me if absenteeism is unusually high. 

Alyssa got sick on Day 6 of school this year. 

The new Pool House (infirmary) was ready. I honestly can’t believe I know how to build an entire house from the ground up now.  

Everything worked perfectly according to plan. Alyssa spent ten days in the pool house with a stack of movies while I slept in the tent outside — the weather was unusually hot, if you recall in early September. Hillary bounced around in her Make-A-Wish trailer. Happy as can be. 

It was kinda the best time of my life. 

Alyssa had minimal cold symptoms, never coughed ONCE just like the last time, was negative for Strep and COVID, and recovered without incident. Like the easiest kid on Earth. She goes to the mall and to sleepovers and movies and we took her to Toronto to see her BFF and she is on the phone way too late every night and she seems to be strong, but… it’s coming.  

I can tell you that she remains the most beautiful person I’ve ever met. Her physical beauty is just remarkable and she has never ONCE forgotten to wear her mask around Hillary — even passing in the little upstairs hallway. It’s just a small gesture, but it’s so very kind to Hillary as it matters so much to her. 

They remain the closest of sisters. The best of friends. Never fighting. They hang out every single day. The mutual respect they have for each other is something they worked hard on early on when our lives were completely upside down. We all had no choice but to move on from all that stood in the way. 

Your life changes so very drastically when your child is critically ill. When you’re all holding her in that bed, praying with every breath for the pain to leave… you change. 

You realize the rip in the carpet is now a precious memory you don’t want to forget. The promotion at work is not for clout — it’s for her survival. That someone you meet today might save your child tomorrow, so always be looking for those angels. I’ve met many. 

Time slows down and things take on a different light. 

Hillary is so genuinely grateful for our new isolation situation. We finally have the four levels (spaces) we needed for her to stay well. I took her to the CHEO Dream of  a Lifetime House yesterday and she said she’d much rather stay here. Alyssa felt the same way. I’m so humbled their hearts are in this home. 

My Uncle Denny advised me daily by text as I was frantically building the pool house, right up until its completion. He passed unexpectedly. He didn’t get to see the finished product. His writing is all over the walls. 

I would like to honor him by sharing his very worthy description of life. He taught me everything I know about stone masonry, carpentry, drainage, ventilation, plumbing, power, architecture. He introduced me to so many life-saving remedies for Hillary which have been noted in her medical chart at CHEO as contributing to her wellness. He told me decades ago about a Great Awakening that would transform consciousness. I believed him. I bought the books he told me to buy. 

I can’t believe he’s going to miss what’s next. 

Please let it be healing for the sick. 

If I sound desperate, you’re right. 

I remain deeply troubled by my childrens’ diagnoses. 

There are so many birds here but I can’t feed them. 

I am in a constant search for the truth. 

I have traveled so deep down the rabbit hole that I’ve ended up underneath it all. 

My desperate attempts to understand reality through exploring freemasonry, astrology, gematria, science — while trying to hang on to my own Catholic faith — has merely been my way of finding her cure. I NEEDED Hillary to break through that barrier. Become that famous celebrity. Get the very best medical treatment in Boston. Have that 50K ready for her transplant costs. Want for NOTHING to make sure her short life is full. The dream I have for her wellness looks NOTHING like what I am currently providing her. She deserves better. 

Sorry to break it to everyone, but…….

Hillary’s cure is so easy to engineer — whether it’s ethical or not. If we wuz rich rich, it would have been done eons ago. I wanted desperately to have a “saviour child” and be the lucky 13th case in Switzerland who genetically conjures up a sibling for the purposes of a transplant, but Hillary did not consent when I asked her at five years old. She has some very strong moral ethics and said she would rather die than hurt someone else. Her heart is filled with pure light. 

She knows, the longer we wait, the closer we get to her cure being readily available. Being perfected. 

Consider the Haplo-Allogenic Transplant, which was charismatically showcased by Julianna Margulies last month on the Live with Kelly and Marc show. I’ve never seen someone explain bone marrow failure treatment quite like this woman, and I sincerely wish Hillary could see this play. 

She discusses MDS (Myelodysplastic Syndrome) which Hillary is at 33% chance of developing. Cancer. In a new treatment, they’ve taken donated umbilical cord stem cells and used adult stem cells to grow the baby cells into maturity, so they could then be transplanted, curing the patient. 

I donated both of my girls’ umbilical cells to Canadian Blood Services. 

I want this. 

I want better. 

I want what I can’t have.  

I want what Kate Middelton has. Selena Gomez. Celine Dion. 

I want it for Hillary Madeline Essex-McKibbin.

I want it for the child in Indonesia with the same condition. His Dad is in my Facebook support group and they can’t get the help they need. 

I don’t want OUR future’s children to suffer this ailment. 

I’m growing tired of my number one rule of diplomacy. Trying not to get cancelled. I NEED to be controversial. We’re talking cures for sick kids here. After calling out Drake and asking him to come through, I’d say I’ve been relatively quiet. I’m feeling a strong sense of civic responsibility to do more here.

Hillary and I have something kinda big coming up and we’re VERY VERY VERY skeptical of this VERY new media opportunity but…..we have to take the chance. 

We know what’s at stake. She wants to serve. 

Hills didn’t break through to YouTube royalty. She was too busy being sick. No golden buzzer on Canada’s Got Talent. Heck, we can’t even get on the CBC to ask for blood.

Instead of seeking superstardom, she broke through the fourth wall. 

Reaching… 

YOU. 

You have been more than merely observers since that shocking day in 2019 when Hillary got sick and cried out for help on camera — using her own small voice. She broke the imaginary wall that separates the audience from the performer. I know it jolted all of you cause Hillary went viral across Canada. 

You have been directly involved. 

She broke the rules which protect you from ignoring what you’re seeing in front of you. She looked you in the eye. She called you out by name. Asked YOU to help her. She KNOWS you can.            I told her.

That’s pretty courageous for a sickly five year old girl. 

Hillary not only broke through the imaginary fourth wall of cinema, she obLITerated the wall of silence. She opened up the conversation for the young and old about blood donation, stem cell awareness, rare disorders, virtual accommodations, chronic illness, masks and PPE — all while trying to share a message of hope. She speaks for an army of vulnerable people who live in the shadows, all over the world.

When the fourth wall is broken, it forces a dialogue you did not expect. You planned to sit back and watch the show but the performer had other plans. You can choose to ignore her, but she’ll still be there, in living colour, asking for YOUR action.

Your REaction — your observation — has shaped our journey. 

You showed up in the thousands.

You didn’t look away. 

You have brought us to this moment. 

Your blood runs through her veins. 

Hillary lives for YOUR glory.

This isn’t fiction. It’s real life. 

I don’t know what’s next, but I know you did a wonderful thing helping a great kid who climbed the highest wall just to get here. 

Please let there be someone out there willing to save her life when the time comes. 

Until then, I’m gonna keep searching. 

Que sera, sera. 

The future’s not ours to see. 

What will be, will be. 

#StartWithHillary