It has been three months since our last update. Hillary is doing well despite her three troubling diagnoses. The summer flew by and our new family memories are humble and few. Always bittersweet.

Hillary’s Aplastic Anemia remains dormant with her hemoglobin at 124, platelets high at 219, and her neutrophils low at 1.2. Her platelets have been decreasing steadily for the past year. 

She continues with a belly button infection but no one knows how to treat it or stop it. It’s a constant source of stress for her. We’ve met with four different doctors and have a slew of prescriptions here, but it persists. 

A long awaited blood test has revealed Hillary’s PNH clone is indeed growing, from 3% to 6% to 9% five years post treatment. If I understand this correctly, the red-blood–cell-destroyers are making copies of themselves inside her vascular system because they sense a vulnerability. Autoimmunity. If her clone size reaches 50-90%, it overtakes her and she will need weekly medicine infusions to stop her red blood cells from breaking apart every night while she sleeps. 

Alternatively, the PNH could actually disappear completely as it does for some AA patients I’ve spoken with. There is nothing we can do but wait and pray for the best outcome for Hillary.

The shock of a double Scoliosis diagnosis remains. I don’t know what Steve thinks about the state of his kids’ health, but I’m utterly devastated for them. It consumes my every thought and deed.

Spinal fusion surgery and a bone marrow transplant. 

Both are coming, no matter what timeline I choose. In the last three months, I’ve taken the girls to over 40 medical appointments. Orthopedic Surgeons, Hematologists, Orthodontists, Orthotists, Chiropodists, MRIs, X-rays, blood tests, physician visits, and thrice weekly physiotherapy sessions across two practices. Double everything. 

The girls missed practically the entire last month of school. I’m still working remotely but my professional career is most likely over. 

Hillary finally had her head MRI in The Ottawa Hospital parking lot and it showed no cause for her recurrent headaches. Alyssa’s full body MRI was a pre-op requirement to ensure she didn’t have a more serious underlying connective tissue disorder which could complicate the procedure. 

Both clear results offered tremendous relief. We are so glad there aren’t more serious problems to address. They are somehow so fortunate. These disorders are complicated, but treatable.

It’s just going to take everything we’ve got. 

Our trip to Montreal to acquire the orthopedic braces was transformative. It was our first trip in five years as a family. We found a secluded Airbnb rental from a family who had a vulnerable child themselves and they offered a comfortable experience.

But, these back braces. They are impossible. Who could possibly wear these? I’m just so very discouraged. The braces can slow the progression of the curve, but not prevent it or correct it. 

Since our last hospital visit confirmed surgery for Alyssa, the focus will instead be on frequent physiotherapy to strengthen her back muscles to prepare her for successful operation. Our referral to the Shriners’ Hospital in Montreal and Philadelphia is still pending since the wait is over two years just to get on CHEO’s wait list. We wish things were better here in Ontario, but our friends’ kids don’t even qualify for surgery, which is even more unsettling. 

I currently speak with eight mothers in Ottawa South whose teens have adolescent scoliosis. We are all tumbling down the rabbit hole together with no end in sight. These kids have nothing in common except that they are tall.

I’ve learned so much in my desperate attempt to understand this condition which affects girls more than boys. It may surprise you to learn that Scoliosis is directly connected to the hormonal cycle. There is no hormonal imbalance present, but the spinal curvature occurs when puberty begins. The spine grows at night during sleep, and at some point, there is a disconnect in the signals between the brain and the spine. The body then cannot keep up with the spine growth and it twists out of shape since it has nowhere to go inside the body.

Routine hand x-rays paint the full picture, no pun intended. The bones in your fingers show exactly where you are in the puberty growth process. The white lines in Hillary’s hand shows her at Risser Stage 0 — she has not even started growing yet. Alyssa is at Risser 4 — the end of the growth process. This also means Alyssa does not qualify for the less invasive tethering surgery we so desperately wanted, and she must proceed with spinal fusion. The second most complicated surgery on Earth. 

It’s a tough pill to swallow.

I estimate her curvature occurred over the span of three months. I took her to the doctor for a fainting spell but no one checked her spine. I certainly didn’t think to check it. It hurts that it’s the same doctor who turned Hillary away all those years ago. I was only granted a blood test during a second opinion visit to “ease the mother’s anxiety.” Hillary almost died. Begging for medical care is truly dehumanizing.

I don’t have anxiety. 

I have cause for concern. 

As soon as Alyssa was diagnosed, I pulled her out of the downstairs apartment and back upstairs next to me, put her on the school bus with her friends, and placed her into Phys Ed class at school to sit out of certain activities with her other friend who also has Scoliosis. I needed her to know she wasn’t alone. 

I also told her to relax her mask use around her friends. 

Within the week, she had Strep throat — our family’s first viral illness in five years. Alyssa presented with a sore throat at midnight and by 8 am, I had her at the CHEO Kids Come First Clinic for a throat swab. We were denied since it didn’t look bad enough.

I went home and recalled the sage words of a friend who just lost her child weeks before. Her words “don’t let them turn you away” really stuck with me, and I took Alyssa to a private clinic in Orleans that same afternoon. She tested positive instantly for Strep A on a rapid test and was on antibiotics within the hour. 

The doctor shared that Alyssa would not be contagious after a few hours on the antibiotics, but if we had waited one more day, she would have been contagious for two whole weeks, putting Hillary’s life in jeopardy. 

We are so grateful we found someone to help. We just have to push. 

We kept Hillary isolated and I was still able to care lovingly for Alyssa who was barely symptomatic, but Hillary did not come out unscathed. Her belly button infection came back positive for Strep, leaving us more confused than before. 

She’s clearly immunocompromised. This rare disease still has a hold of her. 

She knows it. 

People are ignoring it for their convenience. 

I can’t keep her safe much longer, you guys. 

Steve has been mandated back to work by the Government of Canada three days a week to do his desk job in a mask instead of at his desk at home. Hillary has stopped her nightly puppet shows — also known as therapy sessions. Her bubble is getting smaller each day as she struggles to protect herself. 

We are so grateful for the five years of closeness that they shared together as Father and Daughter during Hillary’s lengthy recovery. Steve reluctantly quit his last desk job of 20+ years after his application to work remotely was denied three times in 2020 — the height of the pandemic. It was one of the most terrifying things we dealt with in private during this ordeal — risk losing our second income or give up Hillary’s health. 

We know we chose the right path. 

We were so blessed he found a new job with the Government of Canada who allowed him to work remotely under compassionate grounds for as long as they could. But, three days a week out and four days home just isn’t helpful in terms of infection control. Can’t they at least take him for seven? 

The mask mandate has been removed from the children’s hospital. Some doctors see us and ask if they should put one on and Hillary cheerfully says, “Only if you want to!” and they don’t. They choose not to. 

Her ability to forgive is admirable.

Alyssa has chosen not to wear her mask to school this year. Grade 9. She came to the decision on her own — I don’t believe she was coerced. Masking is something we have never argued about as a family. We simply talk it out, figure out what’s best for everyone, and proceed. We’ve always been on the same page. 

In fact, our girls don’t fight at all. They are both highly gifted in conflict resolution. They have had to work through some serious challenges and subject matter and it’s caused them to be highly intuitive and compassionate — but tough as nails. 

They are getting through this together by talking it out. Not sweeping it under the rug and running away. We’re doing it together. 

I’ll take grit over grace any day of the week.

I will not gracefully weep by my child’s grave. I will fight with my words and acts of truth until I win. Until I get to keep her. There is nothing I want more. If you didn’t receive grace from me, it’s because you stood directly in my way with poor intention. There is no room for moral error here. 

I feel such a deep sense of gratitude towards Alyssa for wearing a mask for a whole year of school. I don’t know how she did it. I can’t believe she didn’t have an incident all year. I can’t believe she didn’t complain. Her selflessness shakes me to my core. 

I support her decision not to mask. We all do. She is elated to be more carefree. Our goal is full integration and we are glad she is not afraid of living her life in this new society where survival of the fittest comes first. 

Please God let her be fit enough for this test.  

I’ve asked the school to ensure air purifiers are operational in all her classrooms, but that’s about all I have the right to do. I’ve worked for the Ottawa Catholic School Board (OCSB) for over 20 years and never wish to bring shame to my employer. I know for a fact they are doing the very best they can to the highest standards. 

Hillary has accepted Alyssa’s choice, but it means another serious shift in their relationship. Hillary has asked for continued protection against SARS-CoV-2. She wishes to remain in isolation. 

We’ve moved Hillary into the master bedroom to allow for a greater virtual school learning space. She absolutely loves her new space and if you walk by our back window, you can hear Hillary and five of her friends screaming and laughing all night long, every day of the week. 

Hillary may still be isolated, but we’ve come a long way in the last three months while attending medical appointments. We’ve enjoyed museums, malls and movies as rewards, just like old times. 

After personally asking her Hematologist if she is clear to go on fair rides, Hillary made it her summer mission to go on every ride at every fair in the city this summer. She invited her long-time online friends and they actually showed up and, you guys — Hillary is so boosted these days. 

She feels like a million bucks. 

She absolutely loves her life. She absolutely loves virtual school. Like most chronically sick children, she is the happiest, most grateful child you’ve ever met — with a heart of gold. 

She has a very good bill of health right now despite the persistent headaches and minor infections, and she has learned that her mask works in almost every situation. 

She loves her freedom. 

Hillary said it was the very best summer of her life. Again. She swam almost every day, often for eight hours at a time with her friends watching online. The weather was perfect trailer weather and she loves that thing with such sincerity and goodness. Thank you to all who participated in that special gift. 

She got a pup tent for her 11th birthday in June and after just one night in it, she was hooked. We will camp off-grid next summer. She’s a natural.

I think she just wishes she could live in her pup tent forever. Away from the danger. Safe in her own bubble. I tried selling the house last year but we just couldn’t get the special help we needed to evacuate within two weeks. I truly wish we had been successful. 

Because COVID is coming for her.

Probably this week. 

I only have one more play in my playbook. 

I built a house. 

If I can’t bring her to safety, I’ll bring safety to her.

As fate would have it, our first home has a tiny dwelling on our deed at the back of our property hidden in weeds with water and electricity. It just needed to be rebuilt. We hired a plumber and electrician to make sure everything was to code and I did the rest myself. 

As I lay the floor joists down and insulated the walls, constructed a bulkhead and window screens and mitered the molding, hoisted the ceiling up by myself while tears streamed down my plastered face, all I could reflect on are the experiences which got me here. The skills I’ve collected and the people I know who have made this effort possible.

The team of plumbers that came to our aid are some of the most beautiful people I’ve met on this journey. Doing absolutely life-saving work. Our Electrician. HVAC Technician. Hydro employees. Pool company. They keep my tiny hospital running to the highest standards, and are here for every emergency. 

Teachers. I can’t WAIT to have Teachers back in the lives of my children!!

Us. 

All of us working so hard in the name of service. Service to others. 

It. Blows. Me. Away. 

The good inside people. 

My most sincere gratitude to everyone for helping Hillary get this far. 

The new infirmary will help us keep COVID away from Hillary so she doesn’t relapse into bone marrow failure. Whoever gets it first will willingly isolate until they are better. 

I went with Whisper White on the walls. 

When I was young, I got a bad fever once followed by a terrible waking nightmare in front of my family. I couldn’t stop screaming. I remember being fully awake at the time. The vision I had would haunt me every single night for several years. No matter what I did, I could not stop the recurring dream from happening. 

I had to build a house. 

I had to build it inside a hole on top of a huge black hole with nothingness all around. It took me years of dreaming. We called it “the hole” and my Mom would sleep with me and try to help. After several years, I finished, and the dream was replaced with another vision. A man running down a field of wheat in a blinding white light. 

The dream has not come back since my childhood, but it cannot be forgotten. I can’t drive by a field of wheat without seeing him. 

I feel like I’m right there. Like I’ve reached the end somehow.

I finished the house yesterday.

I don’t think we’ll ever escape this dark providence that looms over our lives. Life is too complicated and too much has happened. The shadows keep falling over us despite our every attempt to stay in the light.

But that’s exactly where we are. 

In the light. 

Let the darkness fall. We are ready. We will stay illuminated with our hearts. 

I’m so glad I have found Him again. I think I may have been right all along. Praying brings about a light in me that just might be bright enough to win this fight.

I need Him to be real so badly. I need someone outside of myself to be there for me to lean on. I can’t do this alone. 

I need guidance. 

A miracle would be nice. 

Maybe two.

Today, we will enjoy one more day as a family. 

Hillary will weep tonight for the best friend she must let go. 

To quote one of her very favorite songs, 

wake me up when September ends. 

#StartWithHillary 

 

Dark Providences are those events that not only cast a deep shadow but seem inexplicable. They seem to overwhelm us and turn our thoughts upside down in bewilderment. We are lost in trying to find out a purpose in them.
Psalm 77:19