It has been three months since our last update. Things are moving fast again. I will try and get through this as concisely as possible.
Hillary’s last blood test revealed her hemoglobin stayed low at 119, her platelets fell to 229, and her neutrophils came back down to 2.4. Complete remission from bone marrow failure.
Hillary is still frequently ill despite it. She finally beat her three-month Staph Aureus bacterial infection with oral antibiotics only to develop Eczema for the first time on her forearm and spine.
We had to advocate strongly for Dermatology care. Our MD referral for six months out while her spots bubbled up was too far, so we asked CHEO for appointments in Ottawa, Toronto and Montreal. We ended up coordinating a tele-medicine visit between CHEO Hematology and a specialist to get immediate care.
We had a virtual diagnosis with differential and steroid/antibiotic script within 24 hours. Her outbreaks are now completely healed after a two-week course and she is free from worry about a relapse.
We finally met with CHEO Neurology who agreed Hillary is indeed in need of assistance with 15 days of headache/recovery per month. Hillary recalled her brain melting during treatment. Screaming in pain, biting my chest, emergency CT scans, numerous blood transfusions. Ever since then, she’s been plagued with debilitating circulation problems around her skull.
No one has headaches in this house. Her little journal with barometric pressure numbers and foods and possible triggers shows too many connections and we feel like tearing it to shreds and stomping on it.
I spend the majority of my time holding Hillary’s head in a dark room.
Hillary. The time spent in darkness. I can only apologize to her for the barking dogs, bonfire smoke, and the merciless solar maximum that is coming. I keep telling everyone there is something wrong with the sun and my daughters but things just keep moving forward, without change.
The Neurologist recommended vitamin supplements despite her levels showing in the normal range on her bloodwork, but we agree it’s certainly worth trying now that she is stable. We will give the Magnesium, B12 and Q10 for three months before proceeding with a recommended MRI, for which we are so grateful.
They also recommended an eye exam for cranial hypertension. The day after our appointment, I corresponded with several patients with AA-associated cranial hypertension and I have the name of the doctor in Texas who is aware of a published study showing the correlation. I will bring this forward to see if we can offer more directed assistance to Hillary. It may involve a spinal tap. I’d like a referral to the top Neuro-Opthamologist in Canada to start.
I can’t believe this is her life.
We met with a CHEO Ear, Nose, and Throat (ENT) specialist regarding Hillary constantly clearing her throat when she laughs or sings too much. Which is twenty times a day. No one is happier than Hillary, despite her challenges, and I’m always ready with a soothing freezie.
We ruled out acid reflux and the doctor recommended that we consider it could be a tick or habit. Hillary gave it her best effort. We put signs up around the house. It most certainly is not a tick and it is caused by exertion. Instead, Hillary has chosen just not to laugh or sing as much.
These after-care appointments have finally taken their toll on Hillary’s last source of strength – virtual school. It’s been her roughest year to date for headaches and absences.
They have recommended an IEP (Individualized Education Plan). Steve has a PhD in Special Education and he doesn’t want one for her. Hillary really doesn’t want one. She wants straight As. We know the school will do what’s best for Hillary. I think it might be good for her. Accommodation is necessary.
Hillary is certain she wants to continue with virtual school for Grade 6 and begin attending St. Mark’s for Grade 7 in September 2025. She wants to give herself one more year of recovery and I am here to serve whatever path she chooses. There has to be at least one person who doesn’t ignore her reality.
We are targeting her BMI a great deal to prepare her for a stable and confident first year of high school. We’ve had to take so many exercise breaks for illness, and Hillary requires modified exercise. That’s why I bought the pool we can’t afford. She and I know we need to succeed to rule out the BMI as a contributing factor for the hypertension. Hillary as asked for the most epic backyard summer ever and thanks to the Make-A-Wish Foundation, we can make her dreams come true every single year. I will train her for volleyball tryouts.
Hematology-Oncology, Dermatology, Neurology, Ear, Nose, and Throat. It’s all connected. We don’t know if it’s the aplasia (Aplastic Anemia) or the after-effects of immunosuppressive therapy (IST) keeping her down.
Like AA affects every part of Hillary’s body, it has affected every part of our lives. Every single task we try and undertake is complicated by Hillary’s vulnerability. I’ve accepted a demotion at work and have resigned from the Board of Directors for the AMMAC in order to keep focus on her needs.
Hillary continues with her participation in the 4-year Canadian study: Studying the lives of children who are immunocompromised during the pandemic. She has done some life mapping, in-depth interviews, and artistic representations as part of her involvement. It’s the best therapy she’s ever had.
Hillary continues to be heavily involved in our stem cell recruitment efforts. She designed the Students Saving Lives logo completely by herself in her school Canva account. It will go on her resume. Canadian Blood Services has just added scholarship funds and I am feverishly sending out posters again all across Canada.
Since Alyssa has been so successful masking in school for eight whole months, our family has been taking more risks. We’ve taken the girls on some joyful trips down memory lane. Walked in the crooked kitchen. Played at the arcade. Shopped at the mall. It has greatly improved Hillary’s quality of life. Our masks work. Of this we are certain.
Hillary watches every single one of her friends rotate through illness. They call her when they’re home sick from school. Hillary’s phone rings off the hook. She has a pretty large group of Ottawa friends and this house is always howling with screams and giggles when it’s not dead silent.
She doesn’t want to go through it. And she’s proven to herself after five years of isolation that … she doesn’t have to. She loves it here.
We all do.
We want to stay together.
We have some serious challenges coming up.
I don’t know what’s next.
Our family will be risking our safety on April 8 to try and find a location to view the upcoming solar eclipse in its path of totality. If there is even a slight chance that the signs in the sky will offer healing for our children, we all want to be there.
Hillary wants to go.
We will look beyond NASA’s three rockets, CERN’s collider, the double-horned comet, the six visible planets, and instead pray for a renewed beginning. If we see Jacob’s Ladder, we will hold our children up above our heads and beg for them to be taken. To be saved. For the suffering of children to cease.
God help us.
There are no words! Just prayers – and you are all in mine. Rom 15:13 – “May the God of hope give you comfort and peace as you believe in Him so that you may overflow with hope by the power of the Holy Spirit.”
I stand in awe of you and your family’s strength . I can only add the theory that gets me through each day of aging and new health, family, and financial disasters and that is that we make a contract before we are born and we live out that contract in earth school. WE either reincarnate to learn or teach others. I haven’t figured out what I am here to learn and no one wants to hear what I have to teach them so I pray daily to a God that I still believe in that I will find my purpose soon so I can be released from this human vessel in which my spirit resides and be able to return to be part of the energy of God. I pray for you and your family to find peace and joy in any way you can