It has been three months since our last update. I note immediately that our pain is insignificant in light of the tragedies unfolding on Earth. I have finally stopped crying. I rest in a state of complete shock.  

The sun keeps rising.

Hillary’s journey fighting Aplastic Anemia continues to be arduous but manageable. Her belly button infection took us to the brink of the ER again but she worked very hard to avoid relapse, aka bone marrow failure.

Her last blood test showed her hemoglobin stayed low at 119, her platelets fell to 232, and her neutrophils shot up to 4.3 as she fought the infection. 

Her body produced more neutrophils. We didn’t think it would ever happen. We’ve never seen anything above 2.3. We don’t know yet if they’ve gone back down to her below-normal-normal but we won’t test her blood again for another six months. I’m very pleased. 

Hillary’s swab came back positive for staphylococcus aureus — the same bacterial infection that was found in her blood in the hospital four years ago from a confirmed PICC line infection after a surgery error during her zero neutrophil stage of immunotherapy. 

Staph aureus is the most common and most dangerous human pathogen — an organism which causes disease. Skin infections are common, but the bacteria can spread through the bloodstream and infect distant organs like the liver, causing sepsis. It can come from your own body if a skin or mucous membrane is breached, or you can breathe in someone else’s infected droplets into your lungs, which can be deadly. 

We treated the localized skin infection with a prescribed topical antibiotic, but it still hadn’t resolved after five weeks. Then, she started with abdominal pain — it hurt to sit or laugh. Then, she noticed her heart beating faster than usual. Her heartbeat went from 80 to 90 to 140 in the middle of the night while she slept. 

Skin staph infection.
Lower abdominal pain.
High heartbeat. 

Three early signs of septic shock. She and I held on to each other tight. 

In the absence of a fever, we navigated an emergency double-arm blood culture at the local blood lab — keeping her out of the CHEO ER waiting room. Our family doctor prescribed an oral antibiotic and Hillary got back to making her medicine videos four times a day. 

The infection is now completely gone and she’s in the clear after ten weeks of worry. I can’t tell you how overjoyed she is that it didn’t escalate. That we were able to find testing and treatment. 

I personally don’t take it lightly that she requires the most expensive medical procedure there is at a million dollars, so we do everything we can to stay out of the hospital. We’re not overreacting. 

We had our regular virtual check-up with CHEO shortly after where we swept more of her problems under the rug together in the spirit of preserving her remission. The other day, Hillary pulled a muscle in her thigh while we were working out and the veins in her leg turned dark black until I slapped and cursed it all away. The doctors admit they don’t understand. 

Our formal request to meet virtually with the Neurologist was rejected, but they closed down the entire license bureau for me last month. I need another 20 bottles of Tylenol for winter. 

The story is the same.

Hillary needs accommodations and I’m screaming it from the rooftops.

It’s just four years later.  

Each year, things get more and more distorted and I continue to struggle with reality. 

Before this all began, I wore the Freemason Square and Compass around my neck beside Jesus while I laid my patio brick on top of limestone in my backyard. I toured the underground masonic temples in Philadelphia before exploring the cradle of civilization in Greece, swimming in the hot springs of the Acropolis. I was close. 

Then boom. I watch Notre-Dame in Paris burn on the monitor in the airport. Hillary’s soul is in danger. Her heart beats faster as Earth’s pulse speeds up. All the stars are closer.  I prayed for the world to end so I didn’t have to watch Hillary suffer. I wished that everyone would have to wear face masks just like her. I filter through posts about adrenochrome and blood lines and stem cell harvesting and I want answers. 

I’m still fighting the same demons, but it seems that you are all fighting them with me now.

All I do now is pray to Jesus. I’ve never prayed like this. 

The intricate patterns in the Mandelbrot set — also known as the Thumbprint of God — never repeat themselves, but the pattern never actually changes. What you see is always different, but it’s only because you’re looking at it differently. In a different spot. Under a different light. 

I see these patterns very clearly in my quiet, isolated life. The same things playing out over and over, with just enough variation to trick my mind into thinking I’m somehow in control. 

I’m not in control. The days go by, the seasons change, but no matter how hard I try to ignore it, we are still headed towards the inevitable outcome. 

Hillary has Aplastic Anemia. 

She did not receive the only known cure — a sibling-matched transplant. I don’t know how to stop this thing. She and I are staring at this beast straight in the eyes and it’s raging with fire and lust for her life. The moment she wakes, we look for It. We say NO. We’re staying right here. No matter how hard it gets. 

Hillary has missed 26 days of school so far. I can’t imagine burdening the school staff with her complex needs at this time, I just can’t. This is our cross to bear. Our whole family is fighting this fight together. And no one has sacrificed more than Alyssa. 

Alyssa continues to wear her mask while attending Grade 8 at St. Mark High School. She has been buying her lunch in the cafeteria every day now and eats outside with her friends. She says in-person school is WAY easier than virtual school and we are so happy she has found her way. 

Alyssa has attended 16 weeks of school without getting sick once. Masks work. Aerosolized infectious virus particles are literally a billion times smaller than oxygen molecules, in case the science is of interest to you.

Alyssa loves English and Science and has a group of girlfriends just like her with long hair and Converse shoes. We drive her and pick her up every day and she feels connected. She went out trick-or-treating on Halloween with five friends and hung out at her friend’s house. We bought the front section of a movie theater for her to see Five Nights at Freddy’s on a Sunday at 10 pm. She hits the mall early at 9 am to beat the rush. 

Yesterday, my parents took her to get her ears pierced and she looks absolutely beautiful. She’s been invited to a birthday sleepover in January and….the chronic stress of calculating all of these risks is utterly draining. 

What hurdle will I need to jump next? Who do I need to disappoint now?

It’s always my own kids. 

Despite the distorted reality, it’s shocking how well everything is working. My gratitude for the St. Mark’s staff, school, and parent community is truly immeasurable. I honestly didn’t think we’d make it this far. 

But, I am having a problem with Alyssa in a mask. I need her to integrate. That’s why I built an apartment for her. To set her free. The end goal is full integration for all of us. Hillary included — though she has decided to stay in virtual school until Grade 7. 

Alyssa’s success with her mask has positively encouraged Hillary to pursue more activities and we’ve been taking more and more calculated risks, but it’s only a matter of time before that dreaded four–letter word. 

Fever.  

I’m not sure how much longer I can do this. Stay stuck in this pattern. We just can’t seem to get there. None of us can seem to risk it on Hillary’s behalf. My suggestions for further integration are vetoed at every family meeting. Hillary and Steven are adamant that Alyssa must stay masked at school for now. Steve is probably the most worried out of all of us. He’s had pneumonia. Twice. 

We all just want to stay together. We don’t find we’re taking things too slow.

Our kids are happy.  

Now that Hillary is clearly stable (and able to fight infection!) we’ve reached the experimental phase of her recovery plan. We’re exploring the 528 Hz frequency with tuning forks to heal the body and restore her health. Our new vibration plate is helping with exercise since many exercises make her perpetual low hemoglobin-headache worse. I can’t imagine how Hillary would look if we weren’t constantly working at this.

Copper cups for her alkaline water, EMF reducers, grounding, sea moss, intermittent fasting, meditation — you name it, we are trying it to fight this idiopathic disease. I’d love Kendall Jenner’s hyperbaric chamber if she wasn’t using it anymore.

I haven’t found ANY support for kids with rare disorders, you guys. It’s up to us. I remain desperate to help Hillary feel well like the rest of her family does.

It can be a very helpless feeling to be stuck in the same repeating cycle, especially when things are difficult. For people like Hillary, there may be no clear way out.  I honestly don’t understand how she faces that.

But like the never-ending and spectacular mandelbrot set, there is always a different way to look at it. Maybe we’re not stuck in the pattern of illness and despair. Maybe we’re being held there, under God’s thumb — apart from the rest — to show you something. 

To remind you that life is sacred.  

To help you understand that we are all different.

To tell you that you have the power to help. 

Hillary still believes in the magic of Christmas. We will leave out cookies and carrots. Go to bed early. Light the white candle when we wake and place the baby in the manger.

This year, there will be an electric guitar under the tree.

We will hold Alyssa close and promise her a future.

The appreciation we have for the support of this community is felt deep inside our hearts, and we will give thanks for you around our table.

We feel so blessed to have our children. That’s all we ever wanted. 

Please share Hillary’s message. You may not be able to donate blood or join the stem cell registry, but you likely know someone who can. You may break bread with them this coming week. The need does not stop over the holidays. Let them decide if they can help. Let the message shine through Hillary’s story. 

To join the Canadian Stem Cell Registry, you must be between 17-35 years of age. Visit blood.ca/stemcells to order a kit online, swab the inside of your cheek, then mail it back in to see if you are a potential match. Give the gift of life this Christmas and know that it’s the most precious gift of all.

For unto us, a child is born. 

#StartWithHillary

“I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”  — Jesus