It has been three months since our last update.
Hillary had a bone marrow biopsy and aspirate scheduled in May, but we deferred again. This time, indefinitely. Hillary’s doctor [finally] agreed that there is no need for this surgery at this time. We instead got Hillary’s regular blood work done on the front porch.
Hillary’s blood levels dropped on all three levels. Her hemoglobin rests at 120, her platelets dipped to 243, and her neutrophils are back down to 1.7.
She was very disappointed – she was hoping for more growth. I assured her that her numbers were fantastically normal and she agreed and we’ve been celebrating ever since. The platelets can’t keep growing forever. These are remarkable results four years post hATG+CsA.
Still, we tightened up again around the house with the low neutrophils – especially during the days of dangerous air quality in Ottawa due to the wildfires in Quebec. Our worst fear finally arrived in orange abundance. Fungal pathogens. It was distressing but Hillary had her 3M respirator, so she felt secure and happy knowing she had protection on hand.
Hillary continues with circle bruises on her arms and legs again (platelet destruction), and her headaches persist. In fact, Hillary will tell you that she hasn’t felt well for one single day since this began. It affects our entire family deeply, watching her suffer regularly. Weekly.
The doctor told Hillary last week that migraines can run in the family and have nothing to do with her condition or treatment. We’re in second opinion territory again and we won’t hesitate to get it when the time comes to advocate for Hillary’s survival.
Our referral to the ENT was rejected due to availability, but the Neurologist accepted the referral for her normal headaches. We have [almost] secured an orthodontist appointment with someone we trust, and we will keep taking the path of least resistance to protect Hillary from relapse. No matter how impossible it always is.
Hillary bumped her elbow on the door frame last month and immediately vomited and passed out from a severe headache. Her face was dark blue and her temperature was very low. She vomited all day long. Hillary shouldn’t be out there, gettin’ dirty, roughed up – building up her immunity. She barely has any to begin with – for some unknown reason. Her full genome was mapped and there is not one anomaly.
Yet, I see many. One thing I do know from all of this.
Sick kids shouldn’t get sick.
They should stay well. They should be protected at all costs. These innocent lives deserve better than this new world order. Hillary deserves better.
I interviewed for and was welcomed into the Board of Directors for the Aplastic Anemia and Myelodysplastic Association of Canada (AAMAC). I attended my first Board meeting and really felt understood. I now serve as the only pediatric representative Director for Canada and will focus on Communications. One of my first projects will be assisting with the development of educational materials for AA, MDS, and PNH disorders for patients and caregivers across the country to be provided by their treatment facility at the time of diagnosis.
I’m deeply honored to be able to serve in this way. It’s kinda my forte.
People wonder why our #StartWithHillary campaign was so successful across Canada, landing us in MacLeans Magazine for a record-breaking stem cell event.
I have a BA with a minor in Communications. I own my own successful website design firm. I’ve won awards and have over 20 years experience. I’ve done radio commercials and newspaper articles and magazine features and marketing campaigns. I had a 9:00 am interview for Manager of Communications of the OCSB (to whom I owe everything) the day after Hillary’s diagnosis.
I had to redirect my energy.
Now, I’m just trying to save my daughter’s life. And it doesn’t pay – it costs. Dearly.
Imagine the people out there who think I’m media hungry. Pfffft. So crass. They don’t know me at all, even though they claim to. I am looking for Hillary’s life-saving stem cell match – and others like her. I KNOW what I need to do.
It should be no surprise, then, to see Hillary flourish in front of the camera. She wants to be seen. Hillary made a YouTube video for the St. Benedict Crafty Ravens to help sell craft kits for the Make-A-Wish Foundation. She wrote her own script, did the video in one take in her trailer, then edited it by herself in CapCut in about 20 minutes, adding music and text. She still jumps at any and every chance to help the organizations that saved her life.
I am still sending out #StudentsSavingLives emails to school boards across Canada and Canadian Blood Services (CBS) tells me the program continues to have a positive impact. I am meeting with them virtually next week to talk about next steps. I’m ready to bring this initiative to the Minister of Education, Stephen Lecce. I’m so afraid of being rejected by him and possibly jeopardizing this initiative. Please pray he’s open minded, if he will even listen.
Hillary completed her Lifestyle EcoMap for the University of Manitoba’s health study to show how her life has changed as an immunocompromised child living during a pandemic. Her bubble drawing clearly shows the alienation from family, services, and experiences, and the impact it has had on her health and well-being. Heartbreaking, if you ask me. Next will be interviews to talk about these experiences.
I sincerely wish I could write and tell you Hillary is cured. Tell you all what you want to hear. But she isn’t. We must continue on this journey for as long as we can, fighting hard for her survival.
Hillary decided months ago – and is very adamant still – that she wants to attend Blessed Carlo Virtual School next year for Grade 5 and stay isolated. She explained very clearly and eloquently to her doctor that she doesn’t want to relapse, and we are proud of her advocating for herself so independently.
We all check in regularly as a family to ensure we are all on the path we want to be. No one in this house is doing anything against their wishes. We have always been on the same page.
But the page must now turn.
Alyssa will attend Grade 8 at St. Mark’s High School. She’s one year into her Invisalign braces and is now 5’6 and so very beautiful. She is radiant and smart and getting too sarcastic. She’s on the phone with her BFF 24/7 365 and has big plans with her friends and her life. She is in good health and we can’t wait to see her flourish. We are so grateful to her for her great sacrifice. She said today that she completely understands.
We will need to move. Maybe split up as a family. Our first home is simply too small to properly isolate. We have to leave this paradise. We’re not sure what will happen in the next couple of months. We’ve held on to each other for as long as we can.
This is my reality. My future. The best I can manifest. Before this started, I had it all. My life was balanced. My family was whole. My heart was open. I was swimming in Greece. My kids were taking piano, ballet, and swimming lessons. I was in the best fitness class ever, a golf league, and my career was blossoming.
Now, it’s like the more I want something – the more I need it – the further away and more distorted it gets. Covid has changed our entire recovery plan. Thank you to all my checkpoints out there for receiving my cries for help and always answering…promptly. Your texts are not just replies – you are building me up. Grounding me. I exist through you.
We’ve been opening up a bit more as a family. We’ve had some of the girls’ friends over. Had family gatherings in our backyard without masks. Gone into a few stores – always wearing ours.
My parents continue to stay on the path with us, and have been opening up as well. They’ve been here twice a week for four years, helping us navigate a life society does not want us to live. They gave up everything like we did.
They visited on Saturday. Hillary wore her mask on her chin. We played on the swings and talked about the yard and birthday plans and felt carefree. Steve and I wore our masks, as usual.
My Dad tested positive for COVID on Saturday night. He was in the hospital on Monday morning. I pray he does not have to return, and he is doing well as of this evening.
He had visited a few stores last week with my Mom picking up supplies for another Alyssa sleepover. My mother – who accompanies him everywhere – has no symptoms and testing negative. They are both very healthy and triple vaccinated.
I’m truly confused.
Hillary has been directly exposed to this virus that doesn’t exist.
By our most trusted contacts.
Of course it would happen this way.
Of course it would.
There’s a glitch in my matrix.
We are now Day 3 post exposure point. If Hillary wakes up with a headache tomorrow morning, I don’t know what I’ll do. If her nose starts bleeding again and never stops. If I have to return to biopsies and IVs and blood transfusions and stem cells. If there is no blood for her. If I have to watch her suffer.
I just can’t.
Hillary is singing non-stop again. She’s concerned about the exposure but just chants her positive affirmations every time she looks at me.
We’re not going to get sick.
Baba will be alright.
I’m not going to relapse.
Please pray she’s right.
It’s not over for us.
It never will be.