It has been one month since our last update. I will continue to document the journey Hillary is on fighting Idiopathic Aplastic Anemia.
First, the medical.
Hillary has been very well with her usual twice-per-week debilitating headaches. She vomited yesterday after a day trip in the car, but she was so proud she made it through the trip without incident.
She presented last week with a small white rash on her cheek which worsened over several days, worrying us about a fungal infection. It was Saturday and we couldn’t reach her Family Doctor, and all of the virtual ER appointments at CHEO were taken up for the day by 10 am. We spoke with an [excellent] Oncologist who advised for a watch-and-wait, and the rash is still there.
We aren’t just going to just relax about this bone marrow failure thing. We know there is more to this story. We are so grateful to CHEO for their continued life-saving care.
Hillary’s next blood test will be in October.
We put the house up for sale four weeks ago. We found a new home that met our criteria for isolation and we got pre-approved and our conditional offer was accepted…but we ended up walking away at the very last hour due to a potential health risk to Hillary that we had previously inquired about but had overlooked in haste. It was crushing and fell solely on my shoulders, of course, but what else is new. Hillary is most grateful we put her health first – erring on the side of caution always.
We weren’t doing too well selling our house anyways with not allowing agents inside for photos, viewings, and open houses. The market and interest rates are also quite undesirable at the moment. And we only had 30 days left. Doors kept closing. We needed a miracle.
We quickly reexamined our situation and took the house off the market within the very same week. We realized we were looking for the home we already had. The one that has kept our girls safe, happy, and well-adjusted.
There is no mold here and the ventilation and air quality are better than excellent. We have back-up power. There is space for her trailer. Hillary swims every chance she gets and says “I love my life” every time she gets in the warm, healing salt water. We just couldn’t leave and no one was more relieved than she.
Plan B sprang into action.
When one door closes around here, we build one.
If I could build a patio and fence and shed and pool and deck and gate, why can’t I refinish a basement? I had the plans already in my head. It was the path of least resistance to reduce the stress on the family as time ran out.
I had no choice.
I put up a free-standing wall in our above-ground basement and shuffled us around the house, offering a two room, one full bathroom, apartment for Alyssa to live in while returning to school. The girls wrote time capsule letters and dropped them in between the wall studs. I put in a French door for us to see her as much as possible. It’s completely sealed off from the rest of the house with three bright windows for ventilation.
It comes with a detailed plan and we are all in agreement.
Alyssa’s new dorm room is the nicest space in our house and she has moved in already and is very, very, very happy. There is ample space for her to live freely without any precautions. To have a friend over. To be away from us, but still with us.
There is also a second fully contained room with a pull out bed for a parent to live with her and care for her if she gets sick, while still keeping Hillary isolated.
Cause… this is happening.
Alyssa is going to a public high school, deemed a high-risk setting for COVID right now by the Ontario Ministry of Health.
While Hillary pleads with us to remain isolated from sickness.
To prevent a relapse and possible bone marrow transplant.
With her sister as a potential half-match donor.
Everyone around us is helpless to the reality we are facing.
I’ve lost the control everyone so desperately wanted me to let go of.
But, whether we like it or not, it’s time.
I have to make this work.
Hillary is so excited to begin another year at Blessed Carlo Virtual School. What a blessing. She LOVES virtual school more than you could possibly fathom. She gets up early, exercises before school, gets As and Bs, and has years upon years of friends to play with daily. She connects deeply with all of her teachers. She says she now wants to stay in until Grade 7.
Alyssa did not flourish in virtual school like Hillary has been able to. It’s no discredit to the school or the invaluable service of virtual instruction. She was just not able to make connections with her peers or teachers in a meaningful way over the screen. She needs more social and academic development, and we shant delay any longer.
She went shopping at the mall last week in her mask with my parents (who are well) and they spoiled her with clothes, shoes, and supplies. She’s all set.
Alyssa just turned 13 years old and is 5’6” already. She is the most beautiful girl we’ve ever seen, just like we said the day she was born. She is confident and polite and lovely and smart and talkative and brave and witty and NOT shy at all.
She is strong.
She has been a true inspiration to me.
She will lead the way.
We have met with and requested mitigations to be in place with the administration at her school but this is a terrifying experiment, especially as COVID cases rise in Ottawa. There are already questions about Alyssa’s masking. There was zero mention of COVID or public health in the school board’s back-to-school message.
My confidence is very low.
Ignoring it isn’t the solution.
Not for us anyways.
We have all prepared ourselves for the continued challenging of our perspectives. We went out for lunch today and talked it through and we are all on the same page. We wish others could just respect our boundaries.
We KNOW Alyssa can’t wear her mask forever. Duh.
I’ve told her to come talk to me the minute she feels she can’t wear it any longer. It will be up to her and her choice as she navigates through her new society.
But for now, she is CHOOSING to adapt to her new life in this way. The way that does not result in her killing her sister.
We think it’s noble, brave, and selfless. Not child abuse.
We are working together as a family on this. It’s not just crazy Kelly calling all the shots. They WANT me to be the best epidemiologist I can be. I can only shake my head when I realize that not one of the people who has a problem with me since this began has actually physically talked to…. me.
I haven’t talked to ANYone.
I’m grateful to you all here for not looking away.
Hillary was on CityTVNews last week with Sam Laprade to express her concern for her safety with this new transition. We piggybacked on the interviews with experts calling for safer school environments.
We were featured in the AAMAC newsletter, but…. I’ve just taken a 4-month pause from my unpaid duties as Director to focus on keeping Hillary safe. I’m barely hanging on at work. I’m making mistakes.
My heart is not matching my head.
All I can think about is this.
We will be in another MacLeans (MediaPlanet BloodHealth) feature this Fall to promote #StudentsSavingLivesl. We are so grateful. This is the credibility I needed to help grow this program. I have reconnected with the Bruce Denniston Society to help get stem cell initiatives into more schools across the country. I truly wish I could work on this more as I know I could really achieve success and save lives.
I could find her match.
I have to give this everything I have or I will deeply regret it.
I’ve offered to Hillary to take her away from here – to find a place, just me and her, where I can keep her safe. I lay all the possible options out for her. We could just pack up and go. But, Hillary doesn’t want to leave her sister or her father.
She loves them so much, she’s willing to sacrifice her life for them.
I can barely watch.
Half of me thinks I can actually pull this off.
That we will all just get bouts of illness here and there as we enjoy our free lives and it won’t affect Hillary at all to catch an unpredictable coronavirus.
The other half knows way better.
There are holes in my isolation plan. Gaping holes.
Especially once someone gets sick.
I guess a secondary infection is better than a primary one.
Cause this is a forced infection plan, basically.
I mean, my job is to write here, is it not?
Am I not a scribe?
Did you not sub-scribe?
Before it all comes crashing down – the more manic I get – the more I wonder. If I don’t write about everything that’s happened, will I forget what actually transpired? If I don’t share the truth, do the secrets die? When will I be released from all that has transpired?
Filling the hole
The chipmunk and the ER
The Doctor With No Clothes
You don’t exist
The Angel of Death plays the piano
Canada Life Christmas
The secret surgery
Flowers, balloons, and wine
Hillary’s sordid criminal past
Imaginary Long COVID
Code red! Now watch this drive
The cost of being sick
The x-ray they won’t do
Mothers I watch
The Roman inside of her
Get me to Boston
One thing is for certain.
I won’t go speechless.
Hillary has spent the last few days reflecting deeply to accept the new world around her.
It’s the most heart-wrenching thing I could possibly imagine witnessing. Watching her work this through. Day and night. I am trapped in a tormented loop that I can’t seem to “be positive” my way out of. Please tell me, how do you manifest someone else’s medical recovery from bone marrow failure?
Which one of my Chakras does that come from, please?
I can’t even bother to write the ways in which this hurts. To see her concede every minute of the day. To watch her constantly be in a state of defense. To hear her explain to her friends how her life is meaningful even in virtual school. To watch her give in to the needs of those around her.
To serve her needs. Warm her aching head. Hold her thinning hair. Ease her sore tummy. Hug her worry away.
She has begun whimpering in her sleep for the first time in years. Yesterday, she screamed. She wants me to share our story and she is sitting here with me, making sure I finish this blog. Making sure I post it.
I’ve been trying for days.
She wants to be seen.
Whatever happens next will be my fault.
I don’t know what everyone wants from me.
I’ve told everyone what I want from them.
Hillary has firmly asserted that her isolation has NOT ended.
That she will continue to mask and isolate to prevent a relapse and preserve her immunity. That she is relying on me heavily for protection.
She also wants to clarify that she has NOT stopped singing. She has asked to go swimming on her first day of school and I will make it special for her.
She is a constant ray of positivity and has no doubts about the healthy future she envisions for herself. She is pure joy. She does not entertain negativity. She sings her affirmations all day long. She is the light of this world.
I won’t be around later to say I told you so.
I am fighting for her NOW.
She wants me to.
The stakes are higher.
The waves are coming and they’re bigger and stronger and I can’t stop them.
Brace yourself Hillary.