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.
It has been one month since our last update. I have no new medical information to share regarding Hillary’s condition. She continues with 1-2 sick days per week but is such a happy and joyful child. Always singing.
I am writing with some news that may impact Hillary’s recovery plan.
Our family has had to make some difficult decisions since Alyssa will be returning to in-person school in September after four long years at home. She wants to attend Grade 8 at St. Mark’s High School, where her elementary friends are.
We all want to see Alyssa flourish — Hillary included. We thought she’d do one more year at St. Josephine Virtual School and jump in in Grade 9 but, it’s time now. She is so very happy and competent and beautiful and ready and we want to avoid any signs of depression or anxiety that comes with this isolated lifestyle. It’s clear now that COVID will not go away. Just ask my parents.
We’ve taken a realistic look at what’s going to happen next. We’ve discussed it with others in similar medical situations. Steve and I talked it out until 4am and there is just no way around it and just no turning back.
We’re selling our dream home.
It’s only fitting. We’ve both lost our jobs, our family, and now our first house. Childhood illness takes no prisoners. It’s either this, or we split up and live in two separate homes. Or worse.
Steven and I haven’t even told our parents. The sign came early today and this is all happening at lightning speed. I said I was ready (but I’m not). We need to move and keep 40K in credit for a bone marrow transplant…always. The market is bad right now. The interest rates just went up. We will continue to lose. We really don’t care. It will all mean nothing if she’s gone.
Hillary fell down a few stairs in a home viewing last week. She falls often and is not sturdy on her feet. Right before she fell, she asked me to make sure I carpet the stairs for her. It made me realize how very safe this home has been for her. And how that must all now change.
School starts in less than 50 days. Our split-level home is simply too small to manage isolation protocols with viral illness inside the house – like COVID19. There is no upstairs or downstairs here. It’s all one open space. We can’t undertake home renovations while Hillary is here. We need to get somewhere (anywhere) where there are three levels including a dedicated floor for Alyssa as we stage our forced infection.
We have put in a few offers and they fell through and we are feverishly still trying to find something close enough to her school for her to take the school bus. We will likely need to drive her.
I will have to find a way to care for and love my favourite person in the world, Alyssa, without harming Hillary.
I did level impossible.
Level unimaginable is coming.
It’s NOT one day at a time.
The future haunts me now.
The only thing to do is the next thing. Like laying bricks. You pick one up, put it down and make sure it’s perfect, then pick up the next one.
Please know that we are not broken over this. We still have each other. For the sake of the children, we are treating this a positive adventure. They are happy and well. We simply need to switch hotels. We understand that we are blessed to have a home at all. My heart literally aches to admit how secure we are amidst the poverty that plagues 80% of our Earth. But we have worked very hard to provide security for our children and we will continue to strive to do this.
We have found a Realtor who understands our complex needs, and will continue to seek accommodations wherever possible. Moving contactless is going to be a challenge, though. It already has been. We can’t have open houses. We will likely take a few hits for this, and the pressure is hard to withstand, but it’s just more stick-handling.
It’s all easier than losing Hillary.
Home buyers sometimes provide a real estate “love letter” to sellers to help sway them into accepting an offer. The letter conveys emotions and typically explains what the buyer loves about the home and how they see themselves in it.
We haven’t found our new home yet, so this is my reverse love letter, with deep appreciation for ours as we prepare to leave it.
We moved here into our first home in 2007, the year we were married. We never thought we could afford to live in such a beautiful and coveted area such as historic Manotick, but everything just fell into place. We knew this house would be the perfect place to start a family, with the school bus stop right in the driveway.
We had beautiful children and grew with the seasons. They were the best years of our lives. Winter, spring, summer, fall – our home provided the most spectacular views of nature. The full moon shines through Hillary’s window and calls to her, just like it did that night at CHEO.
Hillary was never alone in this house. The split-ranch layout allowed us all to see and hear each other all day, no matter what level we were on. We were all right beside Hillary as she pushed through the immense challenges of her immunosuppressive therapy for two years. There was always someone right there beside her to hear her singing.
Hillary saw the world go by through the pane of glass in our living room. The floor-to-ceiling window let her see everything from chipmunks to shooting stars, people to airplanes, even on sick days. She felt safe behind it — completely carefree. It’s the best layer of protection we could have imagined. That window might be the single most important contributor to Hillary’s mental health. What a gift.
But the best gift of all is the paradise that is our backyard.
We moved the Make-A-Wish camping trailer closer to the house this year for better WiFi and Hillary has never loved it more. She did the last month of virtual school in it. She is very appreciative and honors it with her company as much as possible. It’s just as magical as you could imagine sleeping in there at night in the pitch black — crickets, frogs, fireflies, and noises in the wooded forest all around. Her wish is fulfilled every summer and she is so deserving for the sacrifices she has made due to her health. We sincerely hope we can find somewhere with space for her trailer. I won’t be able to stand seeing it closed up and parked in the driveway.
The pool. We remortgaged the house in May and put in a brand new 24 foot resin salt-water pool with copper ionizer and natural gas heater. I built the deck and stairs. It was the hardest project I’ve undertaken, and I succeeded out of pure desperation to provide more wellness opportunities to my children. Derek at Poolarama went to every extreme to help me. We swam in it for 8 hours the first day, 6 hours the next, 5 hours the next, and then every other possible day since. The health benefits for Hillary are unbelievable.
We’ve never been happier.
I can’t believe we have to leave.
We credit this house to offering a place of wellness which contributed to Hillary’s recovery. We leave it with a great sense of pride and wish for it the best. Like the beloved Giving Tree, this house has given us everything we needed — but has nothing left to give.
When you visit the bench at the end of our street on Edgewater Drive to watch the sun set on the Rideau River, please know that that bench represents how hard we fought as a family here. We dragged that water-logged wood out of the water — making sure we all contributed — and placed it on two braces and turned it into something good. Something divine. We dubbed it the McKibbin Bench and we hope it will be there for us to visit in the future.
It doesn’t matter where we live.
We have to do the right thing.
The sun will still shine through our windows.
UN Resolution 76/132
Hillary woke up with a terrible headache and nausea on Day 4 post-COVID exposure – and it lasted all day – but it was just her usual rare, life-threatening medical condition!!!!!!!!!
She is very well today, singing, dancing, and back to loving her life. We feel very relieved, and I want to thank you for your support.
Her beloved Nana tested positive for COVID this morning.
My Dad’s symptoms have subsided and we all have confidence they will both recover. They are so relieved Hillary has been cleared.
I’ve come to deeply appreciate how this has come about. It allowed us to meet the challenge with compassion and understanding. With love.
The same that we received.
I’m elevated again.
I’m ready to take on more.
I got to keep her.
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.
It has been three months since our last update. Hillary had her regular home blood test and virtual appointment with CHEO two weeks ago. The results were so good, our next appointment will be in six months. This photo is of her today.
Hillary’s hemoglobin grew to 121, her platelets grew to a record 256, and her neutrophils grew to 2.3. Okay, the neuts came down by 0.1 but who’s counting! Hillary jumped for joy in the snow.
Our appointment with CHEO was fruitful with referrals to a Neurologist as well as THE BEST Ear, Nose, and Throat (ENT) Specialist in Ottawa. We will be pursuing both in-person appointments (with accommodations) to find better solutions for the pain in her head, stomach, and throat.
Hillary’s PNH clone remains unchecked. It may be growing but there would be no treatment available at this time anyways.
We were encouraged not to delay with Hillary’s fourth COVID vaccination as an immunocompromised child under 12. The doctors never bring it up during appointments (to be respectful of choice, I think) but we are always sure to open up the discussion. We continue to shield for Hillary and maintain contact with our life-saving Pharmacist.
We discussed Hillary’s frequent use of Tylenol suspension liquid. Studies advise against Advil for Aplastic Anemia patients and I’m trying to ease her severe headaches while preserving her liver. I’m running out of medicine again. Her head hurts so much she vomits and falls immediately asleep.
This reality is brutal.
I want very much to pretend this is not happening.
Four years in, I am able to pinpoint precisely what has crippled me since this all began. What changes my daily reality into something totally unrecognizable.
It’s the chronic fear.
Fear of infection.
Fear of injury.
Fear of death.
Fear of access to care.
Fear of breach of trust.
Fear of a Bone Marrow Transplant (BMT).
Not a stem cell transplant.
From a stranger we don’t know exists.
For my young child.
During an unchecked pandemic.
When the fear doesn’t bring me to my literal knees, it makes me uneasy enough to work harder.
Yesterday, our family signed the consent forms to participate in the University of Manitoba’s study: Making Visible the Life Stories of Families of Children who are Immunocompromised during COVID-19, funded by the Canadian Institute of Health Research (CIHR). (permission to share approved)
This four-year study will bring about sensitive issues and painful memories as we face our true reality using various mediums, but as soon as we heard the title of the study, we knew we could not say no.
This study defines us. It validates our existence. I mean, doesn’t this prove that we are indeed fighting for accommodations to ensure the survival of our child with a rare Immune System Condition (ISC)? I can’t wait to share with them in confidence all of the things I can’t write here.
Hillary just wants the $30 honorarium. She gets a little more for making her own video and she wants to start tomorrow. She says she’ll use CapCut. I hope this is cathartic for her. I hope it leads to change.
I’ve requested through the CHEO Foundation a fundraiser for the purchase of new hematology equipment which would revolutionize the way in which pediatric patients are served.
When Hillary arrived at St. Justine’s Children’s Hospital in Montreal for a blood test, they pricked her index finger and gave her a sticker. No waiting for a room, no waiting for a nurse to draw the blood intravenously through the inside elbow, no room changes.
The result of the ONE drop of blood is a Complete Blood Count (CBC) – a full blood panel showing red blood cells (hemoglobin), white blood cells (neutrophils), and platelets. Not only does this alleviate pressure on staffing, space, and costs across several departments — it’s easier on the kid.
Way easier. For babies. Emergencies. Parents. Exhausted oncology patients. Hillary.
I don’t know if CHEO can say yes (as there is a tender involved) or if I can even raise this money, but I can’t help but think of the 64 billionaires currently living in Canada. Why can’t one of them invest in this right now?
I’m going to try.
We’ve respected society’s every effort while hiding in isolation. We’ve been witness to your persistence, determination, and strength to make the most out of life. But, we really need the same respect back. Respect for OUR persistence to protect our vulnerable child. Respect for OUR decision to adapt our lifestyle. Respect for OUR accommodation needs.
I drafted a plan for a service called COMPED, where businesses sign up to provide comped (as in reCOMPensed) goods and services to immunoCOMPromised people. Since Hillary can’t access a Senators game safely, can she at least get a pizza coupon on game nights? If there’s no place for the sick at events in our great city, can vulnerable citizens at least get a T-shirt? Can customers who are dying get a discount on the grocery pick up fees?
A discount won’t mean a thing if her match isn’t there.
Our #StudentsSavingLives program — to have high school students gain community service hours towards their high school diploma by engaging in stem cell awareness activities — is still very much an active program throughout Canada, but the big Fall 2023 launch didn’t happen as I expected, and I’m not sending out enough emails as I should. Canadian Blood Services (CBS) recently underwent some organizational changes but they assure me that the program is still making a difference and promotion remains a priority to grow the registry.
Little girls are waiting right now for their match to survive.
The Canadian stem cell registry was inspired by one little girl.
My little girl wants to keep helping.
I have cried every single day since this began. I am absolutely crushed by Hillary’s diagnosis. I am no longer the happy person I used to be.
No longer the leader at work.
The first responder on the scene.
The volunteer with a smile.
Still, I would say half of my tears come from the pain of experiencing joy.
The joy of seeing 40 Grade 2-3 students and staff from St. Benedict School show up in a big yellow school bus to sing Christmas Carols to Hillary in the falling snow. They all fit right in front of our front window. To see Hillary fill up with the love from other children, lifting her up in prayer and song. We are so grateful to all those who participated. (parental consent provided for all students in video)
The joy of visiting the CHEO Celebration Bell, which has now been installed on CHEO grounds. You can see it on the left when you drive up to the front entrance and it’s surrounded by beautiful trees and benches for seating. Hillary’s first words were, “Has a child rang it yet?” I posted a photo on Twitter and the first comment was from a mother whose young son just had heart surgery and they want to ring it in the Spring. Our gratitude is immeasurable.
The joy that permeates our house thanks to Blessed Carlo Virtual School. Hillary sings the Our Father so beautifully every morning. She has a group of seven friends from her Grade 4 class this year, and she talks to them all day, every day, all weekend, every weekend. Hillary is rarely accessible. Don’t tell her teachers, but she runs a second Google Meet all day for her friends to stay connected during class. We get to hear the laughter of diverse children all day in our little house and it’s one of our biggest blessings.
The Joy that is Hillary.
Hillary is the happiest she’s ever been. Again. She’s been feeling very well for several weeks now. She has two more loose baby teeth. She continues to sing the soundtrack to our lives. She thinks her new Beta fish has a rare condition and she’s teaching him how to breathe. She tells her friends she loves them every day.
Hillary has asked to be buried under a willow tree.
She has lots of laughs but only one is real.
She blows a kiss every single time she leaves the room.
I suspect the joy which awaits Hillary will be the most painful of all.
Sending her out into this world to take her chances for the sake of being included — putting her young life into the hands of those around her. The pure joy she will feel from the rich experiences and interactions…
…until it all stops, and our world crumbles into ruins.
Hillary has zero desire to try and integrate right now.
Her family, friends, and teachers rotate through illnesses as she observes.
She is asking for continued protection.
She doesn’t want to get sick.
She can’t afford to ignore the truth of her rare condition.
She isn’t ready to surrender.
If I get to spend every last waking minute serving Hillary’s wishes to live, it will be my honour.
The world around us keeps changing but our resolve does not.
It has been two months since our last update. We were trying to hold out for January’s scheduled blood test but Hillary has had a minor setback.
Last week, Hillary became extremely lethargic, then vomited and didn’t stop all day. She tried so very hard to be normal — to say it’s “just a bug” — but it’s impossible to ignore the possibility of relapse. Of transfusions and transplants.
It was difficult for our family to relive the sheer terror that comes with bone marrow failure. The four of us hugged in the backyard during Ottawa’s first snowfall.
Snow was Hillary’s first word.
Hillary averted CHEO’s overwhelmed ER, but we still panicked. We consulted the posted ER wait times, repacked our bags, requested accommodation, put the family on stand-by, and reached out to everyone who could help us navigate the pediatric health care crisis. We met virtually with her replacement family physician during her lunch hour, got medication assistance from her responsive pharmacist, and booked an expedited home blood test with LifeLabs.
Every single helping hand brought the GREATEST comfort to Hillary.
Hillary’s levels remain within a safe range. Her hemoglobin fell below normal to 117 for the first time in years, her platelets stayed at 238, and her neutrophils rose to a record 2.4 — likely because she was fighting an infection. She recovered very quickly over the next few days with intermittent headaches.
She’s sick again today. I can’t even think straight.
Hillary’s illness began this way.
We have no idea if she is still trending in the right direction.
We are still playing level impossible.
And the game is now infinitely harder.
At least my health has been restored so I can better take care of Hillary. I feel blessed to again be physically able to do whatever it takes. For her.
At least Hillary has had two week-long staycations away from home and didn’t get sick. She was such a delightful houseguest at my parents’ house. They were truly shocked at how rich and full her life is. How mature she is. They helped affirm what we already know — Hillary is well-rounded and grounded despite her circumstances.
At least we still have her.
I could explain here all the ways in which things are impossible right now. I wrote them all out in a long list… but then deleted it. You wouldn’t believe half of them and the other half can read like blessings to those less fortunate.
Then, I thought I’d count all the ways in which Hillary is winning at this game she’s been forced to play, but… that list was pathetically short.
So instead, I’ll simply request something of anyone who will listen.
If you can’t do anything else…
…please, please pray for Hillary.
Please pray using whatever Faith you believe in that Hillary will survive this winter.
Please pray Hillary’s heart will get rest from the constant worry of her condition.
Please pray Hillary gets to stay in the loving arms of her family.
Please pray for her sore legs, tummy, and throat.
Please pray for the accommodation she needs.
Please pray for a more meaningful existence.
Please pray for her headaches to subside.
Please pray she wakes up every morning.
Please pray that she never stops singing.
Please pray she will have a match.
Please pray for her happiness.
Please pray for our child.
Hillary was interviewed for and is featured in Chapter 12 of this beautiful tribute to Brian Fraser: One Step at a Time: Reflections on a Battle with Leukemia. Purchase here on Amazon CA. Thank you to Callum and Brian’s loving parents for such kindness and empathy.
It has been two months since our last update and three months since Hillary’s last blood test. We arranged the regular outdoor home visit last week and are once again elated to report that Hillary remains in stable recovery with growing platelets and just-below-normal neutrophils.
Her hemoglobin rests at 120 (from 127), platelets rose to 234 (from 227), and neutrophils dipped to 1.4 (from 1.8). Every day, Hillary feels overall better than the last day — not worse.
We had our scheduled quarterly virtual appointment with CHEO following her blood test where we tried to cover our usual list of quarterly questions. We are so grateful to be under their continued care on this rare path. They’ve scheduled Hillary for more blood work in January and March.
Hillary was issued a letter after her last visit to receive a fourth COVID vaccination due to her immunocompromised status. This past week, we were told it’s a good thing we didn’t proceed as we should instead now wait for the new bivalent booster shot — if we can secure a pharmacist who is willing to issue it to her as a child under 18, safely.
We continue to shield for Hillary.
We have chosen to again defer her bone marrow biopsy, aspiration, and PNH clone test until May 2023 — four years post-diagnosis. We were initially told that she would be sedated for biopsies annually, but standards of care have changed according to the three global marrow failure conferences I attended virtually this year. The rare disorder landscape evolves quickly and without anyone noticing, particularly patients.
A biopsy/aspiration would offer a good snapshot of the marrow functioning in the near future (ahead of a blood test) and would also indicate if her marrow cells have evolved into Myelodysplastic Syndrome (MDS), a blood cancer which would require intervention in the form of a bone marrow transplant (BMT).
Her overlapping Paroxysmal Nocturnal Hemoglobinuria (PNH) clone remains unchecked and if her clone grows to a high enough level, she will need regular, intravenous Solaris infusions to stay alive. Forever. The only cure for that is a bone marrow transplant.
If she relapses with Aplastic Anemia in our care from a virus or infection or injury, she proceeds directly to… a bone marrow transplant.
It’s a lot for me to process. Chronically.
I’ve edited earnestly over the past three years to keep this blog and Hillary’s social media accounts about Hillary specifically, but my health as her caregiver has a direct impact on her journey to wellness.
The last time I wrote, I said I would post again with news about Hillary, fully expecting to report that she was in the hospital relapsing with a fever. I was in THE worst mindset possible and could barely write. Ironically, I was headed for the ER myself.
Steve and I developed a sore throat in February. No stuffy nose, no cough, no fever, no COVID. He was seen by a doctor and treated with Penicillin and it resolved. I took a different 4-day course of prescribed antibiotics, but my symptoms only worsened.
Under the care of my reputable family physician, and after numerous home blood tests, three courses of antibiotics, an inconclusive throat X-ray, and an emergency nose and throat scope by my ENT, I finally ended up in the ER with full body neuropathy, needing a CT scan.
I left Hillary.
I developed a moderate glottic edema in my throat from a “rare” allergic reaction to the antacid medication I was taking to resolve the bacterial infection I was fighting. The neuropathy stopped the day I stopped the medication. I’ve been symptom free for ten days now. After seven months. I was barely hanging on at work. I think I’m better. I’m so grateful that the last (very strong) antibiotic regimen worked, and that I don’t need throat surgery at this time.
I had several angels helping me along the way. Nurses who suggested how to best navigate the ER closures. Neighbours who provided a safe summer space for my girls to play and be free from concern. Family for helping me coordinate Hillary’s Celebration Bell ceremony before I knew I had to leave. Friends for knowing the real me and knowing it wasn’t “just stress.”
My parents. My Mom waited in the ER for hours for me in her PPE while I sat outside. My parents cared for me in my childhood home while I isolated and tested before returning to Hillary. I re-learned so much from them about resilience, patience, and love. I woke up a bit more.
I remembered that the precedent I set for Hillary’s safety can be maintained by more than just myself, when trust is present. My parents have stayed in a bubble since this began in order to be ready for Hillary. They don’t ignore our reality.
Trust is everything.
Hillary left for her first sleepover at Nana and Baba’s house yesterday morning. She waited at the end of our driveway with her suitcase and stuffies and we all hugged and honked. She wore her Stranger Things shirt and pretended she was in 1986 being picked up in my Dad’s coupe. She’s so fun and sweet to be around. She will stay for a few days and do virtual school in my old bedroom and be treated like the adorable Queen that she is. She’s already called and asked to stay longer.
Later this week, we will take Alyssa to her orthodontist to be fitted for Invisalign braces. She is overdue and not smiling for photos. She will then switch places with Hillary and enjoy her one-week staycation with her beloved Baba and Nana. Alyssa is getting ready for life at St. Mark’s next year. She’s so well adjusted and ready.
They won’t ever want to come home.
If that’s the biggest problem we have, I will forever be changed for the better.
Please align the stars to protect my innocent children. They’ve sacrificed so much. Please make it so we can all be together again, just us four. We’re good people. Please pray Hillary’s remission lasts long enough for her to experience just a few more joys of what a childhood should be. She deserves this.
Please just let her be.
“I just want to say thank you to everybody so much for being there through my journey and others, and for donating blood which helps millions of people like me. But we still need blood and stem cells – we also need those,” she said. “It is a simple thing and safe to do. Give blood and get swabbed because it helps millions around the world and it saves people.”
– Read the full Manotick Messenger, August 19, 2022 Edition, by Charlie Senack
It’s been just over one week since Hillary rang the Celebration Bell to commemorate her recovery from Idiopathic Aplastic Anemia. She said it was the best day of her life. Again.
Thank you so much for supporting Hillary on this journey. This event came about so very quickly and there are a great many more people we have not yet had the opportunity to thank — but we wanted to keep the focus on Hillary and CHEO. The dedication ceremony went perfectly. Hillary felt so comfortable and at ease in our backyard. She deserved that.
We ran inside teary-eyed right afterwards for a radio interview on CityNews with Sam Laprade, followed by a CTV News check-in with our favourite Patricia Boal. Both were moving experiences for us as a family, with such gracious professionals who know us so well. Since then, three families have reached out to inquire about ringing the bell, and two strangers have joined the Canadian stem cell registry. More awareness.
Also since then, Hillary had a wonderful 9th birthday, finished Grade 3, lost that worrisome silver-crowned molar that has kept us up for months, and chopped off all of her hair to try and help with her headaches. She jams out on her keyboard at night, exercises on her bike in the morning, and plays every single day with her friends — always pushing a midnight agenda. She loves Stranger Things on Netflix and fairy gardens and the easiest way to her heart is through a puppet show. She loves CardiB, 80s rock, and cheerleading movies. She has a lot of dislikes too. She is incredibly socially aware. She leads. She lights up every chat room she enters.
She is the happiest she has ever been. She feels reinvented.
She still dedicates a great deal of time to her recovery, and only has three minor infections right now. We have deferred her already deferred bone marrow biopsy surgery, aspiration, and long-awaited PNH clone test which was scheduled this July. We don’t know if we have made the right choice. If hematopoietic transplants from an unknown, unspecified donor during a global pandemic were more accessible, we would likely have a different stance. We talk in circles trying to decide, but we always talk it all the way through — all four of us.
We are but one accident, one visitor, one appointment away from a complete life shift, that I’m not sure we can all survive.
Until then, if you’re wondering what we’re up to as we continue shielding for Hillary, as we continue on this roller coaster that is Aplastic Anemia…
…we are holding onto her for dear life.
The next time I write, it will be with news about Hillary.
It has been three months since our last update and three years since we found out Hillary had Idiopathic Aplastic Anemia. She remains in recovery with below normal neutrophils, stable hemoglobin, and high platelets.
Hillary is doing exceptionally well.
It’s the perfect time to celebrate.
It’s time to ring the bell.
Hillary would ask about ringing the bell every time she’d walk by it on her way to treatment. It was her way of holding onto hope for her future. Her survival. She had planned the most magical party afterwards with her doctors and everyone she knew and loved at her favourite Mandarin Restaurant with cotton candy, panda bears, and egg rolls. But when the pandemic hit, that dream disappeared.
We continue to go to great lengths to protect Hillary’s immunocompromised state. The sacrifices are many, but we are committed to keeping her off the transplant path as long as possible. Our hospitals are overwhelmed and we are struggling more and more to find adequate accommodations outside of the hospital for timely tertiary care.
Hillary’s outspoken wish is to ring the bell at home.
Her treatment was highly successful and she wishes to preserve that as best she can by remaining in isolation. Her doctors and nurses understand. They know Hillary personally and know this is what she wants. She wants to stay true to herself.
But what bell then? And how? While honoring her request, I wondered if there was a bigger opportunity for some change that might benefit others in her situation. Many patients are never even offered the opportunity to ring the remission bell in the oncology department, despite spending years in and out of the hospital fighting for their life. Children with mental health challenges, eating disorders, accident victims, and trauma survivors. Children with rare conditions enduring years of immunotherapy.
Warriors like Hillary don’t have cancer. They have a rare disorder of unknown etiology. They may never reach remission. Their diseases aren’t listed beside a checkbox on an intake form. They don’t qualify for any of the financial bursaries or life-changing programs available to those with cancer, despite often receiving the exact same medical treatment and grim prognosis.
Every child deserves a chance to commemorate their medical recovery. Their perseverance in the face of adversity. Their bravery and courage.
We are deeply and truly honored to share that we are donating to CHEO, through its Foundation, their first ever outdoor Celebration Bell, sponsored in part by the Rotary Club of West Ottawa — for all children in recovery, and their families.
We built the Celebration Bell as a family and Hillary will be the first child to celebrate by ringing it in our backyard on June 23 on Facebook Live. Alyssa made the invitation and Hillary has already written her speech and she will make you so very proud. Her 9th birthday will follow three days later. We will then donate the monument for installation in The Little Garden at CHEO, with a view from the President’s office, Alex Munter.
Alex showed up in the hospital room during those first five days on the fifth floor when we were tumbling down the rabbit hole trying to arrive at a diagnosis. He showed up at our first bone marrow drive and stood with us as we shook hands. He shows up on Twitter.
The very first time I met him, he said something that stuck. I’ve come to learn that he did not coin the term, but he references it often and, for me, it belongs to him. He said to me, “Every child deserves someone whose eyes light up when they enter the room.”
It is our solemn wish that the Celebration Bell serve the diverse children in our community — and their families — who are facing unspeakable health challenges in uncertain times. May our eyes light up with joy and pride as we watch them celebrate their miraculous achievements.
May it ring often.
Please join Hillary for this joyous occasion.
We can’t believe it’s finally here.
The Celebration Bell
The Celebration Bell was designed and handcrafted as an original monument to serve pediatric patients at CHEO — Ottawa’s pediatric hospital and research centre. It aims to serve a variety of patients with differing diagnoses, and their families, celebrating medical achievements. The Celebration Bell can be accessed under relaxed conditions in the outdoor CHEO Little Garden.
The Celebration Bell is sponsored in part by the Rotary Club of West Ottawa (RCWO), a “group of men and women dedicated to the principles of Rotary united in the ideals of service and fellowship.” This organization reached out to help us during our time of financial strain while dealing with our child’s illness. Their mandate is noble, and once I read their 4-Way Test, I knew they were the perfect partner.
Is it the truth? Is it fair to all concerned? Will it build goodwill and better friendships? Will it be beneficial to all concerned?
Thank you President Graeme Fraser for straining your budget to serve the children in our community. This is a joyful addition to the list of projects that the RCWO is involved with.
The project involved several business and community partners. The Celebration Bell was handcrafted with great care, admiration, and love for CHEO and its community. Inclusivity and accommodation served as the main inspirations for this project.
Thank you to Heather McDonnell, Manager of Home Hardware Manotick for donating the colour-matched paint for the post. Heather and her staff have provided exceptional customer service to patrons in our community during pandemic restrictions. Thank you Heather for caring and leading an excellent team of conscientious employees.
Thank you to Brent Bigelow, Owner of PlayOutdoors Canada (a subsidiary of JungleGyms Canada) for donating the solid brass bell. I purchased 20 bells of all different metals from all over the globe until I finally came across Brent’s solid brass bell — designed just for kids, and available right here in Canada. One phone call and Brent understood. He allowed an exception for the charitable use of the bell for this project. Thanks Brent. It’s beautiful.
Thank you to Karen Asselin, Community Member for creating the vinyl Celebration/Célébration letters. Karen works at KJP Select Hardwoods and I called to ask a zillion questions. Karen had a great deal of patience with me as I changed direction too many times. Thanks for sticking with me Karen. It turned out great.
Thank you to The Brooking Family for supporting the project and our family. Nicole Brooking was Hillary’s Kindergarten teacher and has played an integral role in Hillary’s survival. Her and her husband Brett, with their three sons, have helped us daily since this all began. Thank you for connecting us with the RCWO, and for supplying the beautiful fresh flowers for Hillary’s celebration. The rest is just way too much to list.
Thank you to The Essex Family for their unconditional love for us and CHEO. Douglas and Estelle — my parents and Hillary’s beloved Nana and Baba — are there for every appointment, every test result, and every milestone. They are there for us on the difficult days too, and that has been both inspiring and helpful to our children. This includes my brother William Essex, his wife Shannon, and their two sons, Cole and Dylan. Thank you for helping us complete this gift to our community.
The project took over six months to conceptualize, design, and handcraft. Thank you to my husband Steven McKibbin for showing respect for the process and painting and varnishing the post with such great care and patience. Thank you my darling Alyssa McKibbin for your photography, photo editing, and engineering expertise. I’m so proud that you understand the importance and value of giving back. This was a family project. Hillary was the inspiration. We are all very proud about of how it turned out.
The Celebration Bell was designed and handcrafted by Kelly McKibbin for CHEO to serve its diverse community of patients and families. Careful consideration went into supporting the longevity of the monument.
The post is made of Sienna pressure-treated wood to best withstand freeze-thaw and wet-dry cycles. The post measures 6”x6” by 10’ long, with the bottom 3’ to be cemented underground in a post hole with a diameter of at least 12”. The post was sanded, primed, and painted with an outdoor, rustoleum paint color-matched to the CHEO brand. Three coats of varathane were applied to seal the post and its vinyl letters.
The vinyl letters on the right and left sides of the post spell “Celebration / Célébration” in 4” white Lato font.
The post cap is an aluminum ball with powder coat finish.
The bell is made of solid brass, affixed to the post with a secure mounting bracket and stainless steel screws treated with thread locker to prevent loosening. Brass is the customary choice due to its ability to withstand rust and corrosion, its historical relevance, and its superior sound quality.
The pull cord is a polyester/rubber blend cord elastic, and is located within reach of paediatric patients (between 2.5-4 feet). The cord is secured to the post using a screw with a protective cap to prevent inadvertent or unwanted ringing when not in use.
Two brass plaques are affixed to the front of the post using brass screws. The plaque text is displayed in English and French in black Arial lettering. The Intention Plaque measures 4.5” x 18” and is located above the bell. The Acknowledgement Plaque measures 4.5” x 8” and is located below the bell.
The dedication on the Intention Plaque reads:
This community bell is
for all families to enjoy.
Ring it to commemorate
a milestone, a recovery,
or an achievement
that brings your joy.
Thank you to Perkins Home Building Centre in North Gower. Although my family paid for the post, we still wouldn’t have bought it anywhere else. Thanks for maintaining excellent quality standards.
Thank you Ottawa Brass for producing the plaques and working through numerous proofs over several months. I will keep this extra brass plaque with Hillary’s name misspelled as a keepsake. She says Hill-i-ary sounds good, too. It will go well with the 19 extra bells I have.
Thank you Dawn Pickering, Ollie’s mom. Dawn told me this would work when I wasn’t sure. This encouragement was very helpful. I will work on a Braille plaque, Dawn.
Thank you Sandra Naufal, Retired OCSB Teacher for offering your creativity and kindness.
Thank you Lauren Rocque, friend, for helping edit all of my thoughts and words. I make mistakes. Thank you for believing in me always.
Thank you CHEO and the CHEO Foundation, for approving this concept and guiding the project with compassion, care, and patience during a ongoing pandemic, city-wide protest, record-breaking power outage, and numerous successful CHEO campaigns of your own. You are the heartbeat of this city. Thank you for saving our children.
The poem Ringing Out written by Irve Le Moyne in 1996 — a rear admiral in the U.S. Navy — served as additional inspiration for this project. Le Moyne was undergoing radiation therapy for head and neck cancer and told his doctors at MD Anderson Cancer Center in Texas that he planned to follow a Navy tradition of ringing a bell to signify “when the job was done.” He brought a brass bell to his last treatment, rang it several times and left it as a donation. It was mounted on a wall plaque in the Main Building’s Radiation Treatment Center with the following inscription:
Ring this bell,
Three times well,
Its toll to clearly say,
My treatment’s done,
This course is run,
And I am on my way!
This poem and tradition have been adapted all over the world to commemorate medical achievements in a wide variety of disciplines, from physical therapy to stem cell transplantation. The inscription on the CHEO Celebration Bell’s Intention Plaque was crafted with Le Moyne’s tradition in mind.
Numerous editorials and research studies have explored the advantages and disadvantages of hospital remission bell traditions. Some studies purport that ringing the bell creates more distressing memories for the patient. Some hospitals have banned remission bells altogether, citing complaints from patients feeling hopelessness due to their ongoing prognosis, and complications caused to hospital processes.
After conducting a thorough, online, global environmental scan regarding the use of hospital remission bells, this project confidently supports the conclusion that the benefits for patients — particularly pediatric patients — seems worthy of continuing the tradition for those who opt to participate. In fact, modifying the traditional oncology remission bell to an outdoor Celebration Bell for general community use might better serve the needs of an evolving, diverse population.
It has been eight weeks since our last update. We took one single photo of Hillary on the day she got her blood test results. She is beyond grateful to still be in stable recovery – hemoglobin 127, platelets 227, and neutrophils 1.8. We share her gratitude for all of your continued support.
Before gratitude, there was pure fear. Hills experienced four straight days of minor petechiae, which she hasn’t had since diagnosis. Her poor little face when she saw the bloody line on the inside of her arm on the morning of Valentine’s Day. Her heart broke. She cried. We tried our best to fix it with love, McDonalds, and Encanto. It worked.
Accompanying symptoms drew a concerning picture – noticeably thinning hair, fatigue, and persistent headaches. Weak in the knees, we re-packed our bags and contacted CHEO to request some additional thyroid testing, since she has had abnormal, but resolved, results previously. We were supposed to wait another month for blood work, but we felt we couldn’t even wait the estimated time for a home-visit and took her into our local Dynacare, first client of the day.
We were very worried about Hillary.
She also had her second Pfizer COVID vaccine two weeks prior and we could not possibly know if it might have triggered a drop in platelets like it has for others in our rare disorder community. We have a virtual appointment with CHEO in mid-March to inquire about a possible third shot, her pending biopsy, and her long-overdue PNH blood test. We’ve been advised to seek out a PNH specialist somewhere in Canada. I attend as many free virtual health conferences as I can. We have an appointment tomorrow with an MD to try and set up home-care, should Hillary require treatment. Her thyroid has come back as normal. The possibility of transplant lingers… always.
The fight for our child’s survival is real. I believe it will get even more challenging.
The United Nations (UN) adopted the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” recognizing the over 300 million people and their families – just like us. The Resolution focuses on the importance of access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.
It means absolutely everything to me. I want it printed and framed. I wish I could hold it up like a shield and have it rain down medical supplies, sports equipment, musical instruments, swing sets, swimming pools, assistive technology, and library books onto the vulnerable people around me right now. I had the best childhood, ever. I so wanted the same for my kids.
Last year, Hillary missed so much virtual school due to illness that she could barely be assessed. Last week, she got her first report card ever filled with As and Es. She worked so many nights and weekends for those. Without the accommodation of an established, free, virtual school….Hillary would not be thriving. We’d all probably be in big trouble. We can only remortgage the house so many times.
I am forever indebted to the Ottawa Catholic School Board (OCSB) for their unsurprising and unabashed commitment to the most vulnerable children in our community. Many of the girls’ virtual friends have spoken of illness and hospital visits over the past three years. I worry about how Hillary’s complicated journey impacts her peers. A child’s wellness affects the whole family. Hillary’s French teacher, Mme. Clement, donated her rare type O blood in Hillary’s honour last week. She said it was easy. She saved a life that day.
Tomorrow is Rare Disease Day across the globe. February 28. I contacted the CEO of the Canadian Organization for Rare Disorders (CORD) about illuminating the Peace Tower on Parliament Hill in Ottawa to commemorate the occasion, and we tweeted Justin Trudeau but… he’s been very busy. It looks like only the CN Tower and the Edmonton Bridge will participate with beautiful neon lights, along with Tokyo and Paris. I will try very hard for next year. It should be safe by then.
Hillary is still set to ring a very special recovery bell. I send #StudentsSavingLives emails every single day. I’m still waiting to have that glass of wine. We have not let our guard down.
We aren’t looking forward to getting back to the way things were.
We are totally different people and our world is forever changed.
We’re ready to face the future with the same determination this family has had since day one.
It has been four weeks since our last update. I’m writing to share with you that which should be documented during Hillary’s journey with Aplastic Anemia (AA) and Paroxysmal Nocturnal Hemoglobinuria (PNH).
We thought choosing between an upfront bone marrow transplant (BMT) and immunosuppressive therapy (IST) was the most impossible choice we’d have to make as parents. Turns out choosing to vaccinate Hillary for COVID-19 at this stage in her recovery was difficult also.
Hillary has two globally recognized, idiopathic, rare disorders and we just can’t ignore that for a moment. Since these disorders are not well-understood, we’ve always taken the most conservative approach possible when considering the terms for Hillary’s care.
At our last CHEO virtual app, Hillary asked if her low neutrophils might affect the way her body produces antibodies post-vaccine. Her doc said it’s all about the lymphocytes and she’s got the right amount of those. 😉
We called Pfizer to ask for any research studies for Hillary’s rare demographic. They surprisingly called back (in person) the same day with the “no sorry” we were fully expecting.
The Aplastic Anemia and MDS International Foundation (AAMDS) recently published their Guidance for Bone Marrow Failure Patients for Protection Against COVID reporting that a small number of PNH patients are experiencing hemolysis after vaccination. We were initially concerned about her platelets dropping, not necessarily her hemoglobin, so these findings had us concerned.
Since we sought second and third medical opinions at diagnosis to determine her first-line treatment path (IST), we were encouraged by Hillary’s lead hematologist at CHEO to consult these same experts again.
Dr. Michel Duvall of St. Justine’s Hospital in Montreal responded same-day to our inquiry. He recommended Hillary should be monitored closely for hemolysis, which would happen quickly after vaccination, if at all. This would be assuming her clone was much higher, like 80%.
Hillary’s PNH clone grew from 3% to 5% in her first year and her last diagnostic was May 2020. Regrettably, Hillary was not retested for PNH to help us monitor the clonal evolution. I know a little girl in Atalanta whose PNH clone is 96%. I do believe PNH is coming for Hillary.
Dr. Yigal Dror of SickKids in Toronto is the foremost specialist in AA, PNH and MDS in Canada. He manages THE database that includes real-time data for all registered patients — Hillary included. We asked him for help. If kids’ levels are dropping all over the country post-vaccine, we’d really benefit from knowing. We can help keep Hillary out of the hospital if we all work together. Dr. Dror is on a well-deserved vacation. Despite this, his office responded same-day also. While we must wait to hear whether Dr. Dror has viable research he can share with us, we already know what his response will be.
Hillary needs this vaccine.
Yes, it may affect her recovery and she may need a bone marrow transplant. Yes, there are still questions about vaccine efficacy with emerging variants. But, if Hillary doesn’t get this shot and gets sick from ANY other virus, fungus, or bacteria, she’ll need whatever COVID antibodies she can mount to help protect her in the hospital as her neutrophils tank and the coronavirus mutates.
Alyssa made a great point yesterday. She noted astutely that Hillary has had all of her other childhood vaccinations and has retained an appropriate antibody response — as evidenced by her recent antibody test to confirm as such — so that should be what happens here with the COVID shot.
The most difficult input we’ve had to digest has been the divided collective response from the numerous private social media support groups for AA and PNH that I belong to. Of the pediatric patients, some are refusing to take the chance on the vaccine for their child and will simply continue shielding to protect them. Some patients have received it and their blood levels have actually increased and their antibody response is robust.
Others have taken it, their platelets have tanked, and they are now searching for a bone marrow donor. There are four of those this week, and I am in contact with all four of their mothers. Their platelets were already falling before the vaccine, and no one can make the connection for certain.
But, is this representative? Do I have all the information?
None of the respondents are from Canada.
None present medically like Hillary.
It may all just be anecdotal evidence, but in the absence of valid published research that we can actually access, it’s absolutely everything. I need data for here where we live. I need to save Hillary.
Today, the Aplastic Anaemia Trust published an article that really solidified our decision to vaccinate Hillary. We don’t feel so alone. The sample included 172 AA patients just like Hillary, all post-IST in recovery, not post-BMT. All mounted an excellent COVID vaccine response after two doses. It’s British, and not pediatric, but it’s valid data from a good source.
We booked the girls’ vaccinations two weeks ago (since Alyssa is 11), but it took some time to find an accommodation to help us keep Hillary safe. We got a lot of no’s. We couldn’t give up just because it’s harder. It’s level impossible, remember?
I can’t believe that after two years of the strictest isolation — after all that we know about airborne transmission and the immunocompromised — our only choice is to take Hillary to a public pharmacy, community centre, or busy hospital to get her life-saving vaccine.
Hillary thinks her Make-A-Wish trailer should qualify as a community-hub to offer shots to her many little friends. It has GREAT ventilation.
The Managing Pharmacist of the Osgoode Pharmacy (5 minutes up the road) was the nicest man we think we’ve ever met. Mr. Patel has been vaccinating kids in their cars all week. He didn’t need convincing and we didn’t even tell him about #StartWithHillary. He prepared the paperwork in advance and brought the kids full-size Aero bars after we waited our 15 mins after the shot while listening to the radio.
The girls are happier than they’ve ever been. The light isn’t as bright as I thought it was going to be, but my God, my heart weeps for Earth right now. We are very grateful for the privilege of receiving one of the best vaccines in the world to help protect our family. Hillary danced and yelled “I feel so alive” both before and after her shot. I can’t understand why.
Thank you for continuing to give blood and platelets to ensure there is adequate supply. Thank you for getting vaccinated. Thank you for sharing our story. Now might be a good time to ask a friend, aged 17-35, to #GetSwabbed. I’ll keep sending emails for #StudentsSavingLives. 428 more students have participated this month.
Please pray for our sweet Hillary to stay in recovery.
She has so much more joy to share with the world.
It has been three days since our last update. We are humbled to relay Hillary’s latest blood test results. Her platelets held at 217 (previously 218), her hemoglobin 126 (from 125), and her neutrophils dipped to 1.5 from 2.6.
We’re overjoyed, actually. It’s extremely reassuring to have her platelets hold. Repeat blood work in four months. March. Perfect.
Our virtual appointment with CHEO today was everything we needed it to be. Dr. Leibman makes us stronger with her expertise and empathy.
The next time I write, it will be to invite you to celebrate Hillary’s recovery. With the Children’s Hospital of Eastern Ontario — the heart of this city.
Hillary is very happy. She feels very well. We feel so blessed.
We may not have much, but we got to keep Hillary.
Thank you for helping us.
It has been three months since our last update. Three months since Hillary was declared in remission with a full/complete response to immunosuppressive therapy. She is feeling the best she’s ever felt, both medically and mentally. Her doctors have decided not to wait six months for her next blood test, and we have a virtual visit with CHEO this Wednesday.
Hillary has a home blood test tomorrow morning.
We are so excited for a chance to see her levels rise again, reinforcing remission. But that excitement is underpinned by sheer terror. If her platelets take a significant drop, she proceeds directly to a bone marrow transplant from an unrelated donor. If there is even a match there for her. This will always be her second-line treatment. She only has four circle bruises right now.
We’re still on this rollercoaster.
We’ve come to the holding part on the tracks that you get to where you’re not quite sure if you’re about to get off safely, or if you’re about to experience the most terrifying part yet.
We can’t seem to escape it. No matter what the current events.
I only know how to do one thing.
The first time I heard the word mitigate, I was at work in an IT meeting. I had never heard it before and had to sheepishly look up the meaning: to reduce the severity, seriousness, or painfulness of something.
We all do it, but seldom with great focus. Knowing that word has changed everything for me. I could have accepted the harsh reality about the state of the global stem cell registry.
Or, I could mitigate it.
A simple #StartWithHillary hashtag that began out of pure desperation has turned into something that helps others as well, and that means a great deal to me.
I am deeply honoured to share that a generous corporate sponsor has offered to support Canadian Blood Services as they build on the #StudentsSavingLives initiative, with a dedicated website, streamlined application process, and focussed support. It’s real. I’ve seen it. It’s not a dream. Podcast next week. Magazine in December. We will continue to accept every single radio and TV invitation until the global registry is robust with all of the ethnicities that make up the fabric of this country. I truly believe this is achievable. Thank you all for your support. I’ll keep sending emails.
We mitigated Hillary’s life-altering treatment by making it about something else entirely. Her medicine rituals were not about ensuring it was absorbed into her bloodstream at the proper time twice a day to evenly suppress her immune system, even if she was repeatedly vomiting, not able to stand, extreme tachycardia, nose bleeding, throat burning, head pounding, bones aching. Her doctors said…get it done, at all costs, no matter how many times it takes. So, it became a challenge…more about completing that day’s YouTube video while having the most fun possible. Hillary’s idea. Some of the footage is dark and can simply never be shared.
We mitigated COVID by wearing our masks and getting vaccinated. We also had to change ALL of our relationships. It’s sadly affirming to see that the same people who couldn’t respect our situation are the same ones who have lost so much in this pandemic. Hillary is so grateful for the path we took.
We mitigated the viral, bacterial and fungal infections that accompany Aplastic Anemia. Hillary did not touch the inside of her nose for one full year. She couldn’t go strawberry-picking or digging at the beach or in the neighbour’s pool. She couldn’t pet your dog or chat from afar without your mask on. We lessened the likelihood of complications during treatment through persistence and determination. Sacrifice.
We then mitigated the theft of her childhood with the support of Make-a-Wish Eastern Ontario. Hillary’s daily nosebleeds stopped the same day her wish came true. We can’t explain it, but we are forever indebted to them for their profound effect on Hillary’s recovery.
Hillary will ring the bell soon to celebrate her arduous journey. But it won’t be the remission bell within the oncology department. We had to mitigate that too, and CHEO continues to demonstrate through action why they are a world-class hospital. We can’t wait to share more with you, shortly. It might be bigger than the last news.
All of these mitigating factors have not made the journey less painful. But they have provided the support we’ve needed to push through. We have come so very far, but there simply is no going back to the way we were. We can’t return to our normal care-free lives, despite how hard everyone wants us to. Trauma changes you. Forever.
Hillary won’t have a hard time sleeping tonight but she will wake earlier than usual tomorrow morning. 6:00 am. She will brush her two loose teeth before putting a dab of skin freezing cream and saran wrap on her non-sucking-thumb side arm. She will get online with her three best friends and sister before her phlebotomist arrives to take her blood on our front porch. We made cupcakes. We’ll head out and find a swingset in the sun somewhere before signing on for virtual school in the afternoon. Hillary doesn’t like to miss Mme. Clement’s vibrant French class. Dynacare will call with the results later in the evening, and we will enjoy a special dinner and watch Jungle Cruise, no matter what the outcome of her blood work.
I can’t mitigate tomorrow’s events any more than I already have except to plead for your prayers, thoughts, and positive energy for our sweet, genuine daughter.
Please pray her platelets stay above 200.
She could really use some more hemoglobin.
And her neutrophils, if you have time.
Please mitigate for Hillary.
It has been five days since our last update. Hillary had her virtual follow-up appointment with CHEO yesterday. We hadn’t seen Dr. Leibman in two years. She was the first doctor to sit us down and explain the arduous path that lay ahead. I believe the term she used was “no-man’s land.” The last time she saw us, our eyes were filled with fear and dread.
Hillary cried emotional tears of relief when Dr. Leibman read the blood results aloud before declaring, “You are in complete remission.”
She said it so clearly and perfectly and with such fervor. We will always appreciate that. Hillary deserved that. Those words were strong and are hers forever.
The rest of the appointment felt…blessed. Divine. I had my usual list of twenty questions and Dr. Leibman answered every single one, involving us in her responses and decisions. She also made some remarks that meant a great deal to us as we close this chapter and begin anew.
She said that there is no such thing as karma in pediatric oncology.
She said Hillary was a very hard-working patient.
She said we did everything we could as parents.
She said we navigated the rare disease path exceptionally well — that really stood out. She knows better than anyone our pure intentions to save Hillary. Going to the ends of the Earth sounded reasonable when no one on Earth knew what to do. She helped us get there.
She said we were good people. A good family. We feel so grateful for the nurses, doctors, and staff at CHEO who wrapped their arms around us with patience and acceptance. Blood is not thicker than water, and they are family now.
Hillary asked if she could wait six months for her next blood test instead of the suggested three. She also asked for a “spare” blood requisition just in case she’s not feeling well. She will have a biopsy and aspirate in June 2022 and her PNH clone will be retested at that time. Since we opted for immunosuppressive therapy instead of the more risky transplant for her first-line treatment, her condition could possibly evolve into Myelodysplasia (MDS) or even Leukemia, and she needs to be closely monitored for life. We also believe in the research studies we signed up for. There are other little Hillarys out there.
Hillary is going to ring CHEO’s remission bell before she begins Grade 3.
She will do it online, live, somehow. You’re all invited. We have to figure out how to thank everyone for this triumphant victory.
I drudged you through such darkness with my words and fears and desperate pleas to donate blood, bone, time, prayers, and tweets. It’s now time to bask in the light that is the joyful re-birth of an innocent child.
Our sweet Hillary.
She is honored that her journey to wellness has brought joy to so many hearts. I can’t wait until she thanks you in her own words when she rings that bell.
It’s been three long months since our last update. Hillary had her blood test yesterday. We again opted for a home visit by Dynacare which went perfectly. We baked cookies for the phlebotomist who assured us she was double-vaxxed before she arrived.
The lab called at 10 pm last night with the results. We frantically called our family and texted as many friends as we could before posting online.
Hillary is in remission.
Her hemoglobin held at 125, her platelets grew to a record 218, and her neutrophils reached the normal range for the first time at 2.6. We all cheered and cried on speaker with the lab technician.
Her treatment is a success.
We have a virtual follow-up appointment with the hematology team at CHEO on Wednesday to discuss next steps. I hope they say it’s time to ring that remission bell. They may want her for additional testing. Her headaches persist — but I’m inclined to conclude they precede blood growth. Her shin pain used to always precede platelet growth.
I couldn’t wait until next week to share the news with all of you. Hillary’s victory over this rare disorder is a victory for all of us. But, I never thought those neutrophils were going to come up. I was on my knees. So many of you held me up. Helped keep our family together.
We are forever indebted for your answered prayers. We look forward to celebrating with you all.
But for now, we have to stay focussed on her wellness. Remain vigilant. Get those numbers up a bit more and try to stay out of the hospital. She’s still in recovery and I’m not giving up now. This journey is not over.
When Hills got sick, I vowed to honour one of the oldest binding documents in history, the Hippocratic Oath written by Hippocrates: ...to treat the ill to the best of one’s ability, to preserve a patient’s privacy, to teach the secrets of medicine to the next generation, and so on.
Ok, so we shared a bit on social.
It’s been six weeks since our last update. If you’re still with us on this marathon that is not-yet-even-remission for Aplastic Anemia, please take comfort knowing that Hillary is doing as well as you possibly can two years out.
Her platelets are slowly rising and she has no active infections. Our nightly prayers are gratitude only. Mornings are still surreal. Two whole years later, and we’re all still very much on edge about Hillary’s status.
We’re just not sure if she’s out of the woods yet. The annual biopsy would have helped by confirming bone cellularity, but that’s still deferred. Her PNH clone remains unchecked. Her swollen armpit needs an ultrasound. Her dental needs are extensive. She’s had three headaches this week. Those neutrophils remain trapped somewhere.
A successful transplant is a cure. Failure is the end of everything.
She’s either recovering slowly, or digressing slightly. I’m not sure. But, I still feel in my heart that — with extreme diligence and perseverance — she can clear this. I’ve heard from several people first-hand who have. Globally. I have hope those levels will rise. She’s the hardest worker I know. She might even hold an immunity key.
It can still go either way, as her doctors affirm, and we just need to be ready. Our bags remain packed. The clothes inside of them no longer fit and the expensive medicines are all expired. Her next home blood test and virtual appointment with CHEO is in mid-August. We are eternally grateful for their approach and care, and frozen when we think of our next visit there. What will we be there for?
We continue to take zero risks and exercise maximum precautions in all affairs at home and are doing very well. We don’t complain.
I shudder at the thought of where she might be if we had pushed her a little harder — sent her to that school, took off those training wheels, swam in that pool. If we had said yes to singing on outdoor rock stage with fireworks and raining confetti. Yes to that packed Senators home-opener as Anthony Duclair’s special guest. Had Santa over. Been at those swabbing events.
If we had ignored her reality.
Thank you to all those who have understood and stood by us on this journey.
We did other things.
Hillary and I submitted a video-application to Ottawa-born Mike Holmes’ Make It Right to modify our home to make it neutropenic-safe. We never heard back. Sent another video to the Shawn Mendes Foundation to apply for a Wonder Grant to allow her to spread her message to join the registry through social media. He didn’t see us, like Drake. Submitted a wish request, like a good friend recommended. We did it all sitting in that first-class, world-class, hospital room for those 39 days with not one window to scream out of.
Make-A-Wish has honoured Hillary again this year as a SpokesKid for #TheGreatMAWCampout for her birthday this weekend. She turns 8 in tomorrow! She shares the spotlight with SpokesKid Ollie, who has the exact same birthday as Hillary! His mom and I are closer that you can possibly imagine — and we’ve never met. She is way better at ALL of this than I am. http://olliesbump.blogspot.com/
The girls already slept in the trailer for five days last week during the 30+ heat wave a couple weeks back. It was like we never left. Both said they were the best days of their lives, diving underwater with goggles in our inflatable pool, eating ice cream cones before playing in the trailer. This Make-a-Wish program works. Several skin rashes and bug bites sent us inside for a week of recovery, but it’s coming along very nicely. We were back in last night and well, it’s 3 am and it’s starting to rain lightly. We fell asleep to the sound of bullfrogs and from the river in the flicker of fireflies under a Strawberry Full Moon with a perfect, unobstructed view.
Live 88.5 FM is holding fun #TeamHillary and #TeamOliver contests all weekend. I’ve asked for blood and bone, but asking for money is hard. If you can participate this weekend, please consider a modest donation for either team. The children who benefit from these wishes have very complex needs, and these wishes improve their quality of life. Hillary’s life. Ollie’s.
It’s hard to celebrate tonight. I grew up swimming in Lake Clear beside a gigantic Totem Pole that my Poppy had from one of the Expo Pavilion’s he was the carpenter for. Hillary had already changed her profile pic to “Every Child Matters” before I was even aware of the darkness ascending over Canada.
Hillary was honoured last week with a 20-minute virtual interview for the RBC Youth Ottawa’s Max Keeping Award for Personal Courage. With a record 52 candidates, it was an honour to be shortlisted as one of the final four young interviewees. She was nominated by Nat Dixon, a friend from high school whom I never expected to connect with after 20 years. Yet, there she was, at our first stem cell drive…then she organized another large event. Hillary was not chosen as the winning recipient and Nat endearingly assured they got it wrong and I agree with humble respect. That exposure could have educated and revealed Hillary’s match. Her voice can save lives. That’s the only thing that surges through my mind when we boldly tweet Drake and Trudeau. Thanks Nat for being Hillary’s number one fan.
After twelve weeks of virtual preparation, Hillary was denied the opportunity to complete the sacrament of First Holy Communion on our front porch through the window. A member of the community reached out to me to write a letter seeking accommodation. More footprints in the sand. Thanks Linda. Still, the Archbishop confirmed that the Vatican states the act of Reconciliation/Confession MUST be done in person — no exceptions, rare disorder and all, not to mention pandemic. This broke our little family, just a little bit more. No white dress for Hills. I’ve come to realize that many are in this predicament around the globe. I’m not sure if it’s a fight I’m strong enough for, but my wish is for Hillary to be welcomed and accommodated rather than pushed away. Thanks Elaine and Shelley for your tweets that enabled me to move forward, swiftly, with grace. You’re right. Jesus is already here.
The #StudentsSavingLives campaign was a beautiful success. Over 100 students have already officially requested their #GetSwabbed kits to join the Canadian Stem Cell Registry in just two weeks before I dropped it all quickly to allow administrators to focus on happy end-of-year. Over 800 students have participated in the community service hours. We paid volunteers in pizza to translate the materials into French and Inuktitut to reach all provinces and territories. Merci Adéline and Lisa. My Mom and I received some of the most beautiful emails you could imagine from ministries, mayors, directors, teachers, and students across this great country. One Director didn’t like Canadian Blood Services so decided not to share it with his staff and students.
The need is currently desperate. Education Minister Stephen Leece made THE most perfect video plea on Twitter to #GetSwabbed I’ve ever seen, where he tore open a sterile swab and swabbed the inside of his cheek — in front of a family in need. He deserves tremendous credit for his compassion, initiative, and understanding of the issue. He did it for 3-year-old Leia, who has Dyskeratosis Congenita, and has no match among the 40 million donors in the global registry. She’s why I went ahead of a formal launch. She can’t wait. Demi Lovato tweeted. The Rock. It’s getting out.
The Red Grosbeaks showed up the day I tried an orange slice and they are so friendly. We’ve lived here 12 years and I’ve never seen birds like this here. They surprised me at the window when I was crying before dawn to prepare for the day. They swayed on the branches but feet away and looked me in the eye. They stayed for two days and haven’t come back. The rotting orange carcasses have instead attracted a murder of crows and I’ve put new wood down but there is confusion for all.
Navigating this complicated journey is like writing a book. Carefully considering the storyline and setting gives the path meaning and strength. Safety. Who to let in. Who to block out. The plot is thick, and I’ve tried to write between the lines to protect the integrity of the characters.
That’s why when it came to securing our vaccines, I knew exactly what we needed. We emailed the small pharmacy within our grocery store to see if they might have any available doses. They’ve home-delivered all of Hillary’s prescriptions since she fell ill, and the grocery store has played an integral role in Hillary’s recovery. Their virtual shopping is THE only thing that works in my life.
Last week, the pharmacist emailed that she’ll do everything she can to protect our precious family. I had no idea she felt that way. Within the last six-week timeframe, Katy has administered both our first and second Pfizer doses, in our vehicle. We got our second shots yesterday. We both feel fine with sore arms both times. The girls came with us and gave her the nicest handmade card that was sincerely accepted during a special moment of compassion and humanity.
That’s what we needed. Accommodation. She got it. We are forever indebted.
Hillary’s teachers haven’t had their second shots. My parents are waiting for their second OPH vaccine appointment. Most of the people I know are waiting. Vaccine guilt seems as real as survivor’s guilt. But it happened so organically and quickly and we are extremely grateful. We have to be healthy, with full cups, ready to fight — for Hillsies.
Despite the sheer terror that permeates our family life minute-by-minute, we’re relatively happy. When we do go out, we don’t feel at a deficit from the time spent in isolation. We haven’t lost touch with our sense of society and how to function within it. But society has changed.
I cry through most of it. I just can’t wake up.
Hillary told me last week that when she dies, she wants to come back as a bird in a willow tree. That I should look for her there. She recently changed her mind and would prefer to live on forever, as her digital self.
Hillary was a perfect baby. She was born on her due date, just like Alyssa, with zero complications. She had a beautiful black Mohawk her first day of life. She thrived. In fact, she was always the strongest. Walked before one. Self-taught. Never a fever. Sang herself to sleep.
Tomorrow, we celebrate her birth, which was a joyous day. We will continue to serve her, as our solemn duty, because she is truly helpless.
You have to do so much more than just feed the birds.
The rules can’t relax just because it’s taking a long time. Time is all we want with her. All she wants is us. We can’t possibly imagine letting her go.
Happy 8th Birthday, Sweet Hillary Madeline Lillian McKibbin, aka. Crystal
Dear Ontario Secondary School Principals,
I am writing with a service opportunity for Grade 12 students to earn up to 10 hours of Community Involvement before graduation, while also possibly saving a life. This activity conforms to the guiding principles outlined in the Ontario Ministry of Education’s PPM 124a, and can be completed from the safety of home, during the current provincial lockdown.
Canadian Blood Services (CBS) is a well-established community sponsor who has historically involved Ontario students in various pre-approved activities, such as blood donation. This year, due to tremendous need, CBS is offering activities related to joining the Canadian Stem Cell Registry.
CBS is committed to enhancing this experience for September 2021 with additional resources and a streamlined online application process, including post-secondary institutions. It is our hope that “Students Saving Lives” can become an annual rite of passage for young Canadians who are willing and able to participate, similar to the robust registry in Germany.
There are currently 800 Canadians waiting for a match to survive. My daughter, Hillary, is one of them. One of your students may choose to offer the life-saving gift she requires. I am a well-respected member of my Ottawa community with a Mayor’s citation, a Director of Education’s Commendation Award, and an international following. I am privileged and honoured to have the opportunity to connect student volunteers with a meaningful way to be of service to their community, through this worthy initiative.
Your feedback is most welcome and greatly appreciated as we strive to improve the ways in which this heroic opportunity is offered to those eligible in Canada.
Schools may enhance the activity with additional exercises or increase the number of hours. Parents/guardians have been given authority by the Ministry to approve hours until June 2022. Guest speakers for online classroom engagement purposes are available upon request through Canadian Blood Services. All resources are also available in French.
I must acknowledge the generous nature of several professionals who helped me get this project off the ground. Thank you Canadian Blood Services for saying yes on my first real phone call in a year, and for letting me go ahead with it now, mistakes and all. Some can’t wait. Thank you to the OCSB for embracing this initiative late on a Sunday evening, when the volume of info is already too great. Thank you to my in-waiting business partner who pulled over while driving to fix my spam issue, cause he knows I can’t wait. To the perfect Twitter stranger who translated all of the materials into French in exchange for an extra-large Gabriel’s. To the Principal who understood my plight thanks to her own battle with cancer, and connected me with a equally empathic and knowledgable colleagues. Your collective understanding of this complex issue is a gift to your students. To my mother, on Mother’s Day, who at this very moment, is seeking out new contacts, responding to inquiries, delivering milk and running shoes. Thank you. That’s the kind of support we need. This was an organic collaboration that was truly meant to be.
It has been one month since our last update and two years to-the-day since we found out Hillary needed help for #AplasticAnemia. Getting to keep her was the best Mother’s Day gift I’ll ever get.
Two weeks ago, Hillary had a minor nosebleed for the first time in a year. Then, leg pain. We moved her blood test up and the homecare visit was a beautiful experience for which we are grateful. Hillary’s platelets grew to 177, her hemoglobin hovered at 119, and her neutrophils stayed at 1.2. We feel extremely relieved, but not out of the woods. I don’t know how I’d be if her levels dropped. My legs are weak. Yet, we still feel that Hillary is on track to achieve life-long remission with this initial therapy. We have abundant hope, backed by excellent progress.
This Mother’s Day, I share a heartfelt gift with all those struggling with the helpless feeling of wondering if a cure is out there. The materials below have been shared with every school board in Ontario. In just two days, several students have requested a swab kit to join the registry. Next week, we focus on private schools…then Alberta. Next year, post-secondary.
I found another stone and turned it over. Please share this opportunity with the high school students in your lives. Let them decide if they are able or willing to consider this now, or sometime in their future as a citizen of Canada.
We have to start somewhere.
It has been two months since our last update. I have no new blood test results to share for the first time in two years. Hillary is in the best health she’s been in since before this nightmare began. She is just two years older now.
Her third annual biopsy to determine cellularity is deferred. We are undecided if we will take her in for May bloodwork to check her levels. Looks like we will be operating on faith until things are more stable in Ottawa.
Last week, I read a new Harvard peer-review journal forwarded by our primary hematologist. The findings were a terrifying reminder of the roller-coaster we’re on. Of the 314 children included, 29 died during the five-year study — six died on the first day of treatment. I remember our nurse saying, “I’ve never done this before.”
Of the 285 survivors, 110 of them needed second-line treatment within five years, in the form of another round of immunosuppressive therapy or a transplant.
Many of them at 24 months.
That is exactly now.
Of those 110 children, 68 underwent an unrelated donor transplant. Sadly, 20 of them died.
The journal concluded that event free survival is significantly longer with an unrelated donor transplant over a second round of immunosuppressive therapy as second-line treatment, but standards differ greatly around the globe. Hillary is also part of a research study — I can’t let her go down the wrong path just because she is part of a specific cohort.
Which brings me to…here. The exact same feeling of desperation I felt in that hospital armchair two years ago when I opened a Twitter account on my iPhone and created #StartWithHillary. I knew then that this was for life.
The journal kicked me so hard in the stomach that I decided to do something about it. In just two weeks, I am nearing completion of the first ever Global Aplastic Anemia Registry: A Voluntary Patient Database for Aplastic Anemia (AA) History, Treatment, and Outcomes. This time, I’m in an uncomfortable IKEA armchair in my room while the kids take over my bed, night after night.
I’ve sourced two similar online registries (for COVID-19) in other countries, and it looks like I can pass an ethics and privacy check with disclaimers. I have an informal steering committee ready to review and support my launch. I’m aiming for respondents across the globe thanks to the power of the social media networking groups I belong to. And yes, I’ll be tracking COVID-19 and vaccination responses. Maybe I can even get a research grant so I can stay home with my family. I haven’t walked past the end of the driveway in six months.
The last big database I created examined Educational Standards of Personal Support Workers (PSW’s) in Canada. The findings were incredulous. I used to work on contracts so I could stay home longer when the girls were born.
Looks like I’m high-functioning in a crisis. Never knew that.
Monday, I have a phone call with Canadian Blood Services (CBS) to discuss my other brainchild which came to me as the third wave washed over the city last week. A real phone call. I hope I make it through without choking.
I’ve literally been frozen since the pandemic began in terms of promoting diversification of the stem cell registry. Little tweets here and there. Most of the time, I find it too painful to share stories of others searching for a match. But, I think I finally have a sustainable idea that can help save lives, that doesn’t include Drake.
I’m excited about this one. I’m writing it into existence here.
Check this. Every high school student in Canada must complete 40 hours of community service hours in order to obtain their high school diploma. Pre-approved activities range from coaching sports teams to tree-planting to reading to seniors. During the pandemic, the hours in Ontario have been reduced to 20 in order to graduate, and in-person volunteer activities rendered impossible during lockdowns.
What a beautiful opportunity to introduce the idea of joining the Canadian stem cell registry as service to your community.
How many ethnically diverse 17-18 year olds in this country would be willing to maybe watch a video, take a quiz to determine eligibility, engage virtually with a real patient…before deciding to become a potential living hero? I’m hopeful CBS will offer these students the same comprehensive transparency and marketing genius they apply to everything else they do. They are world-class.
The part I like most is that it’s completely voluntary for these students. That’s critical, especially for the follow-through when it comes to actually donating if called upon. It’s a personal decision, and one that should be considered carefully. In Germany, ALL the cool kids do it.
When the Ottawa Catholic School Board (OCSB) agreed last week to allow participation, I was elated. Talk about putting the dignity of the person above ALL else. Setting the bar at the highest level, as usual. I can’t believe they even got back to me during this busy time. We danced in the basement and talked about all the fun things we could do for students over the years. Hillary wants to gift students this blood-red, fidget-putty from a local company, and I agree it’s perfect.
The only thing I seem to be able to do is fight for Hillary’s life.
Today, Hillary said, “I’m so proud of you.” Her smile was huge and her eyes were bright and she said it in her lower, slower voice and with so much love as she was swinging on her basement swing with Alyssa. Then she repeated it to me louder, with a little laugh at the end, like she really meant it. Tears welled up in our eyes. This is going to save lives.
This is my destiny — it would appear.
Hillary’s destiny is yet to be fulfilled, I hope.
Hillary is exceptionally gifted. Her light shines too bright. It makes me sure I’m going to lose her. Ottawa Councillor Diane Deans asked Hillary to participate in virtual International Women’s Day last month, and it again demonstrated that Hillary resonates. She still emphatically wants to be a world-famous singer. After three weeks off virtual school with no visible improvement in headaches, our Naturopathic Doctor suspects her constant singing could actually be contributing. It’s been a breakthrough, let me tell you. Our neighbours are about to get a taste of why, with the camping trailer going in the backyard this year. xo
Make-A-Wish Eastern-Ontario honoured Hillary again this year by asking her to be the Spokeschild for the 2nd Annual Great Make-A-Wish Campout in June. They say it’s for life, and we agree. She will share the adventure with Ollie, who just got his wish after an urgent, life-saving, haplo-identical sibling transplant during the first wave — and he has the exact same birthday as Hillary. Their stories are so intertwined, it’s eerie. (olliesbump.blogspot.com)
I still think the hardest is yet to come.
Hillary will literally need a bodyguard for the rest of her life, or at least until there is more focus on infallible PPE. I still fight daily for her terms of care. The things that I vowed to accept are no longer acceptable. Ignoring Hillary’s reality during all stages of her illness and recovery is dangerous and plain selfish — it doesn’t matter if your reason is to bring her the joy she rightly deserves. It creates a harm that can’t be undone.
She doesn’t want to go back to the hospital. We take the highest road possible and it’s gotten us this far. She doesn’t want it any other way. We embrace the many sacrifices we have to make to stay together.
The kids are happy as can be. They game on their laptops all night while talking to their friends on their iPods. JustDance before breakfast and walk laps in the backyard with birds and chipmunks. Pack thermos lunches and sit in the (unused) electric car with the radio blaring. They’ve started counselling and art therapy and complain it eats into their play time, just like virtual school. It’s a perfect mess.
We have food, power, water, and most importantly, WiFi.
Let’s just hope we have blood.
Evolving literature right now around COVID-19 and AA posit that immunosuppression might actually be beneficial in reducing the likelihood of the COVID-19 cytokine storm responsible for ICU intubation — but researchers admit there isn’t enough data. They also suggest Hillary’s immunocompromised body could act as the host in which allows coronaviruses to mutate, hence creating stronger variants. But they wanted her in school.
A pandemic is exactly like a rare disorder — you have no idea what you’re dealing with as you race towards a cure while fighting to survive.
The only way is to put life before livelihood. To truly put the children first.
It will never be fair.
This society keeps ripping the bandaid on and off instead of letting the healing take place, and it’s hard to watch. SickKids Hospital in Toronto is now accepting adult COIVD-19 patients into their ICU. That was our only transplant centre.
Event free survival (EFS) is measured from the start of treatment until the need for second-line therapy, or death. The longer I keep her safe, the better chance she has of surviving.
I can’t have an event.
We’re drifting in the boat in high winds, too close to the rocky shoreline. I wish we were alone in the boat, but there are others surrounding us, causing more waves, threatening to crash us ashore.
I am not fatigued. My guard never goes down.
The only thing I’m tired of is the holes in the armour we’re using.
If you need a reason to start giving a damn….
It’s been over two months since our last update. We just got Hillary’s blood results back yesterday, and are overjoyed to relay that she is holding.
Her hemoglobin held steady at 117; her platelets grew again to a record high of 165; and her neutrophils remain just below normal at 1.2. Her doctors call it “Hillary’s normal.” They’ve reiterated that her neutrophils might never come up, and that her immunity is stronger than average in spite of the numbers.
The platelet increase represents independent cell growth, without the use of medicine. It is huge. We were again reassured that it is a very strong indicator of success, but an unrelated transplant still formed part of our phone discussion with CHEO.
After a great deal of careful consideration, we requested to take Hillary to our community blood lab rather than return to the hospital. The busy hospital waiting room is unnecessary when other options are available, and the enhanced safety measures at Dynacare (along with their mobile app) rank at the top of our list.
Going to Dynacare was emotional and cathartic. Two years ago, at the same location, on an early Saturday morning, the girls and I had made a special trip of it. That’s her in in the photo (right), white as a sheet. It was Hillary’s first blood test ever, and she didn’t cry. Later than night, she would need three blood transfusions just to stay alive.
Last week was a little different in our winter gear and PPE. But, would you believe the same phlebotomist took her blood? Hillary remembered Many instantly, even with her surgical gown and mask on. She was efficient and sincere.
We waited all night for that phone to ring just like it did on Mother’s Day. Instead, we coasted through Valentine’s Day and Family Day… just not knowing. During our phone appointment with CHEO, Hillary was referred to a neurologist to try and ascertain where her migraines are coming from. Yesterday’s headache was so bad, we were sure it would bring on the most-dreaded F-word imaginable. Fever.
She got through. She told me what to do and I did it.
I’m trying to chart her headaches as they coincide with sleep, exercise, air quality, technology, gluten, dairy, stress, fluid intake — but there is no emerging pattern thus far, except for continued blood growth. All of Hillary’s nutrient levels have remained excellent since diagnosis — Vitamin B, B12, D, K, Iron, Folate, Magnesium…everything. It’s perplexing.
I can’t find the missing code.
Last week, we met virtually again with a Naturopathic Doctor to try and ramp up some supplements and reintroduce probiotics. We revisit Dynacare in three months for her next blood level check — followed by a phone call with CHEO — with the possibility of heading in earlier depending on our opinion of her presentation.
We’re also seeking the expertise of an Ear, Nose and Throat (ENT) specialist to address throat pressure and a new dentist to deal with her extensive ongoing dental needs. We have so many other needs that simply can’t be addressed due to lack of resources right now.
It’s challenging. There is a lot of fear there. I don’t know if I’ll be strong enough if that time comes. I really don’t.
One thing is for sure. Hillary is a warrior.
Like the bravest soldier, Hillary pushes through every morning — the first to rise. She leads.
She’s committed — with an unwavering focus of beating this unspeakable disorder that robbed her of her freedom for so many years. Never fatigued by the necessary protocols required to remain honorable in her fight. Not deterred by the beaten path that lies ahead.
She’s honest. Decent. Self-disciplined in everything she does.
Courageous in the face of extreme peril.
Proud to serve her country.
Her meritorious work continues.
Hillary was the opening philanthropist guest for the first-ever Kids Edition of An Hour To Give with Sam Laprade on CityNews in January. She spoke by herself for twelve minutes advocating for stem cells, teachers, and her family.
Maverick died on January 11, 2021 after the most courageous battle we’ve ever seen a human endure. Truly. He was 9. He skipped ATG and went right to a transplant from an unrelated donor. His four brothers were not a match.
Hills said yes last week when MediaPlanet partnered with the Canadian Organization for Rare Disorders (CORD) for a national campaign on rare disorders, and asked for our input as patient and caregiver. We tried to fit it all in 350 words.
Kathy died on January 20, 2021 after decades battling multiple infections, including COVID. She was pretty and lonely and she shared her journey in great detail so we could learn.
When the Make-A-Wish-Foundation asked Hillary to make a video message for Jacob who is heading into brain surgery next week, Hillary offered to write him a song on her piano.
Dianne relapsed last week. She lives in Ottawa and shares the same birthday as Hills. She needed two blood transfusions this morning.
And now, Hillary’s rosy red cheeks pop up on Instagram feeds across Canada to help with yet another #getswabbed campaign for Canadian Blood Services, Hockey Gives Blood, along with CanadaLife Insurance. The colour in her face is something we rarely see, and we know who to thank.
It’s all so connected…this community we live in. Right down to the blood flowing through our veins.
When we are asked to help, we say yes.
That’s how I was raised. Our motives are not ulterior.
I’m not sure if Hillary’s understanding of this duty will change as she matures. I keep reminding her about the lasting effect of her digital image, and she just does not want to stop. She’s fiercely proud and it seems I might be holding her back. TikTokCanada liked one of her Tweets, and she is just on cloud nine.
The dire truth of it though, is — we need Hillary. Like, the collective we.
As you could imagine, people are quite hesitant to join the stem cell registry right now as they grapple with the realities of the evolving pandemic. It’s understandable. Ottawa was forced to temporarily close their main blood donor facility (which also houses stem cells) for the first time ever in an unprecedented effort to address a COVID outbreak amongst staff in the blood collection facility.
If little Hillary can show us how to weather this storm, can’t we at least help her and others like her?
I have a lot more to say. These blogs are too long, yet I could write every single day and not get it all out.
I forgot a couple things when I was describing Hillary above.
She’s stunningly beautiful, incredibly funny, and truly gifted.
All that we ever asked from her as parents was that she was kind.
It has been just over one month since our last update and six weeks since Hillary last took her medicine.
I think Hillary has been gifted the miracle we’ve all been praying for, everyone.
She is doing exceptionally well with stable blood levels.
Hematologists at CHEO have been monitoring a little closer since stopping her immunosuppressive therapy — with visits every two weeks instead of monthly — and the last two blood tests showed stable levels.
With Aplastic Anemia, it’s all about the levels.
Her hemoglobin hovered at 117, 113, 118; platelets at 145, 141, 149; and neutrophils at 1.2, 1.3, 1.2. We were fully expecting to see a significant dip on at least one of the cell lines, but are beyond overjoyed to report that her levels are holding nicely — completely on their own.
I had to wait for at least two blood tests to share her progress with you.
I had to make sure there was a positive trend. Plus, things were a little shaky there for a while and… we really weren’t sure. Hillary had three virtual ER appointments in the last three weeks to address minor infections. I went from thinking she had mucor lesions in her nose from crashed neutrophils to a persistent case of impetigo, treated with prescription antibiotics.
Don’t Google it.
All three issues are resolving thanks to early intervention, her headaches are decreasing in frequency and intensity, and she is ramping up with exercise and nutrition/supplements. We feel it will take at least six months to see all of the side-effects subside as her body detoxifies from the cyclosporin. She already looks and feels different.
We continue to work hard, pray, and give thanks.
But each day is truly a mystery. Today is a headache day. We can’t ever give up.
Our gratitude for those donating blood and blood products is immeasurable. Platelet growth is a strong (if not primary) indicator of recovery with this particular blood condition. Back when she was in the very severe category (VSAA), Hillary needed platelet transfusions daily — and platelets have a short shelf life of seven days.
Local blood donors — our neighbours — literally saved Hillary’s life.
Two days before her appointment last week, a flock of 30 evening grosbeaks stopped by the backyard feeder before virtual school. It was like a flash of light. We’ve lived here for over a decade and never seen birds like this — they’re on the Ontario Species at Risk List. The bright yellow songbirds with white wing-bands sounded incredible and mingled closely with the cardinals, blue jays, and doves.
I don’t know what’s next. Auto-immune conditions such as these most often come in pairs. I’ll always be waiting for the other shoe to drop. We go back in late January for a blood test. We might even wait three months.
We might have to wait.
The grosbeaks left after her CHEO appointment and haven’t been back since.
They were a very special gift and it snowed a pretty snow while they were here and I hope they return. I wake before sunrise each day to put out fresh sunflower seeds, and I think I can hear one nearby.
Please continue to pray that Hillary is one of the lucky 30% who achieves lifelong remission from this mysterious blood condition that has taught us all so much.
I believe all of our lessons have been very different.
I hope one of them has been how great sacrifice can lead to something greater. In our case, it’s all been for Hillary’s survival.
We are extremely humbled by the support of our neighbours this Christmas. We feel safe and sheltered in Ottawa. Our hearts and minds are overloaded with gratitude for our humble home and circumstances, the nurses and doctors at CHEO who saved Hillary, the teachers and caregivers who are ever-present, and essential service heroes working similar miracles, and the turkey which will be dropped at our door on Christmas Eve by loving family.
We attend church in bed with warm cloths on heads, and sleep by the digital flickering light of our homemade Advent wreath. There is Peace, Love, and Joy here.
You have provided the Hope.
To quote Dickens’ all-too-relatable-now Tiny Tim blessing this December 23, with the utmost sincerity from our sweet Hillary to all of you:
“God bless us, every one.”
It has been one week since our last update. Friday the 13th was the last day Hillary took her immunosuppressant medicine. Ever.
Her blood levels rose on all three levels for the very first time. Ever.
Her hemoglobin rose to an all time high of 117. Her platelets to 145. Her neutrophils to 1.2.
We are now back in the watch-and-wait phase. We go back in two weeks for bloodwork at the lab again, then back two weeks later (mid-Dec) for more bloodwork and a meeting with a hematologist.
So far, so good.
Friday’s appointment went exceptionally well. Hills serendipitously got her favourite phlebotomist, Kevin, who she hasn’t seen since it all went down on the 5th floor of CHEO two years ago. His needles don’t hurt. He also HLA-typed our family in a rush to see if we were stem cell matches. Nope. Just three 6/10s.
A 10/10 match is considered the “cure” for Aplastic Anemia in the medical journals.
I want that 10/10 to be there for her.
Just before Hillsies’ appointment, the Right Honourable Justin Trudeau, Prime Minister of Canada sent out a call-to-action on Twitter. He heard the cry of little baby Boston in Winnipeg, and urged this great country to simply retweet his message to help Boston find a viable stem cell match.
What a gift. What a man. It’s just a simple tweet, pointed to a noble cause.
We watched as 6,500 retweets circulated — Canadians ordering their #getswabbed kits and sharing their experiences. Canadian Blood Services responded to every single question, and comment. We engaged with as many as we could, and will forever return to thank more generous strangers for joining the Canadian stem cell registry.
We hugged. Celebrated.
Friday was beautiful. Hills had a cute interview with CTV News’ Matt Skube just before dinner. We pumped ourselves up before going on so we could deliver a happy message of hope.
We ate East Side Mario’s by candlelight with music. Made our own Shirley Temples. Left a mess. Watched Night at the Museum on our mattresses in the living room. Just the four of us. Just how we like it.
Instead of doing her medicine routine at 8:00 pm, Hillary cut into THE most “profesh” bloody drip cake — something she has always wanted. The girls ceremoniously placed all of Hillary’s medicine and accessories in a cloth bag to be put away for keepsake. We couldn’t break the bottle like she wanted. We might need it again. We need to remember that.
Hillary’s back on CTV Morning Live on Monday morning, just before virtual school.
I don’t know how she’ll be feeling. But today, she’s great.
There is something divine working here.
I truly believe that part of the divinity we are experiencing is because of the prayers and energy constantly being directed towards our family, by all of you.
This might work.
We might make it.
Please keep praying.
It has been one month since our last update. Hillary’s monthly appointment was easy on her body, but hard on the mind and spirit of our family. We don’t have answers to all of our questions and are now bracing for an unexpected change in her treatment path.
Hillary’s hemoglobin rose from 104 to 111, but her platelets fell from 140 to 136, and her neutrophils are back down from 1.4 to 1.0. Still below normal on all three cell lines.
Despite her slow partial recovery status, the decision has been made to stop Hillary’s immunosuppressive therapy six weeks earlier than planned. Her last day will now be on Friday, November 13 after an early-morning blood test in the general lab at CHEO, bypassing the extra-sterile Medical Day Unit (MDU) for the first time. We pray that her blood levels are up and that the appointment goes smoothly.
We are counting down the days. The doses.
We might be looking at a new normal for Hillary — or may be headed to an allogeneic bone marrow transplant — is what we were told by our lead hematologist. The only thing that is clear is that it’s quite unclear.
Both scenarios leave Hillary vulnerable heading into this winter.
The day we got home from the hospital, a hawk snatched one of the baby doves off the feeder as I stood outside. I watched them struggle, feathers everywhere. The baby dove looked me in the eye before it slipped through the fence.
There are still many unknowns. Hillary’s overlapping Paroxysmal Nocturnal Hemoglobinuria (PNH) clone is still of concern but will not be retested since she does not have observed current hemolysis (breakage of red blood cells) and the test is costly. We’re committed to keep pushing for this data to ensure Hillary receives the proper treatment should this condition progress.
We requested a thyroid test due to some concerning symptoms Hillary has been exhibiting and the results came back outside of the normal range (more overactive T-cells) and we are still anxiously awaiting an interpretation from a doctor and how it relates to her idiopathic blood disorder and her current health.
We have no idea if we have a stem cell match in the Canadian registry.
Nevertheless, we are so excited to stop this dreadful-tasting, life-saving, cyclosporine medication which Hillary has taken twice per day for the last 18 months. We have to take this step. We long to see the side effects subside — stomach distention, bone pain, fatigue, gum overgrowth, feet peeling, weight gain, excess hair growth, and dangerously high kidney and liver levels. It’s been hard on her cute little baby body.
But will stopping the medicine also stop her blood production?
We have to believe this will work — on November 13.
We need you ALL to believe.
Her blood levels are on an upward trend. Her bone marrow biopsy showed undeniable improvement. Her creatinine, urea, and ferritin levels are improving drastically with each monthly blood test. Hillary feels happy and healthy. She is no longer sick on a daily basis.
Blood research continues to advance at a rapid pace. It’s astounding to read about how far we’ve come from the first attempt at a blood transfusion back in 1666 between two dogs using a goose quill, only to have it banned by science — and religion — for a hundred and fifty years until the discovery of blood types.
Last week, they announced the first ever at-home pill treatment for Myelodysplasia (MDS) — the blood cancer that Hillary is now at life-long risk for since undergoing immunosuppressive therapy.
I’m still not sure if we are lucky or unlucky.
I think it’s more…we are the lucky unlucky.
Virtual school is working beautifully. Halloween at home was perfect. We are still able to afford and get food, medicine, and other necessities completely contactless.
If this treatment works…my God, I just might believe again.
We still don’t know when Hillary will ring the bell. I’m still waiting to taste that wine.
I can’t believe there are only four more days left of Hillary’s medicine.
The doves keep coming back.
The hawk is still here.
On Friday morning, Hillary and I will wake up early to get to the blood lab first. We won’t sleep the night before. We’ll listen to JUMP 106.9 on the way there to laugh at the call-ins and free our minds. We’ll meet Nana and Baba in the parking lot, as always. We’ll race home to Alyssa and Daddy to see two huge balloon AmongUs characters that we ordered from Brad the Balloon Guy. We’ll eat East Side Mario’s takeout for the first time in a year with the gift-cards Glenna gave us and move our mattresses into the living room for a movie-slumber party. The Great Make-A-Wish Campout continues.
On Saturday morning, Hillary will sleep in for the first time in years. No more medicine.
We will never be the same. We are praying for survival.
Please pray for Hillary.
Thank you for your collective forbearance respecting the current pandemic. For helping keep our hospitals, schools, and food chains working. For donating blood. For spreading the word about joining the stem cell registry.
Little baby Boston can’t find a match.
Neither can Olivia.
They are waiting right now.
It has been seven weeks since our last update, and things continue to improve for Hillary as she battles this rare blood disorder called Aplastic Anemia. Thank you for your continued inquiry and prayer.
Please take comfort in knowing that Hillary has achieved another major win. Her last monthly blood test revealed an increase in neutrophils from 0.8 to 1.3.
Finally. Over 1.0 for the first time. We screamed out the windows of our electric car on the way home. Her hemoglobin rose to 104 and her platelets rose to 140. She presented just below the normal threshold on all three cell lines.
I’ve been hesitant to share this positive development with everyone. We haven’t even spoken with a doctor about it yet.
We’ve been quiet on Twitter again.
This is the calm before the storm.
We are at a critical time point in Hillary’s care. We have numerous questions for our lead hematologist when we go in this week — some of the questions simply don’t have answers. If her normo-cellular bone marrow is now operating at 60%, could we not harvest it and give it right back to her if she needs it in the transplant phase later? Her stem cells show no genetic abnormality. Her T-cells were merely overactive when she was requiring blood transfusions.
No matter what, we simply must proceed with ceasing her medication on December 24 to determine if the treatment was a success or a failure. I hope there is a free hospital bed with abundant blood products under the Christmas tree if it doesn’t quite work out…maybe with some of those hard-to-find, short shelf-life platelets wrapped in a bow.
She already needs her two front teeth. She lost her top front four this past month, and she looks unbearably cute. Last night before bed, she said she thinks the cure for her condition is happiness. I thought we were really happy before. I don’t know where she is looking.
Her treatment is working. Her levels are rising.
She still has nap-inducing-headaches twice per week, but her nosebleeds have stopped entirely. She looks well and eats well, but sleeps too soundly. We’re treating an ailment on her foot which I hope resolves in my healing hands soon, and there are other things. I don’t share it all. It’s private. I can see it when she walks. Sense it when she sleeps.
Most nights, I long for this world to implode as I stare up at the night sky so I don’t have to experience losing her to this lingering illness. I make wishes on water and long for Father Peter’s soothing voice to fall upon my ears. I send constant condolences to parents who are experiencing what I never want to, and offer advice to families trying to boost the stem cell registry so their child can live. This week, my heart aches for Isabella, Maverick, Melissa, Evie, and Brantley, and their families.
All five of their stories are truly unbelievable and unbearable.
I can’t look away. I have to watch and learn.
During the day, I pray that life is just a simulation — all the glitching talking heads and hilarious coincidences — and once I acquire the cure in my inventory (those elusive stem cells), I will finally skip to the next level…or plane of existence…or vibration. If it IS all a simulation, COVID19 was a major error. I wanted the whole world to know what it was like to live in isolation, but not like this. Not with this level of miscommunication and misinformation.
But my children are indeed real, and I’m supposed to wake up and operate on faith — set an uplifting, hopeful, moral tone within my household at all times.
Model a healthy mindset.
A morning dove hit the bedroom window during breakfast on the first day of school. The girls and I stepped out back and watched it take its last breath.
What followed was the best first day of school ever and another wish come true. We have nothing but the deepest gratitude for the OCSB Virtual Academy and what it has done for Hillary who missed an entire grade and a half of school. Both girls are learning. Getting frustrated. Recovering. Catching up. Socializing. Dreaming. Flourishing. Online.
In fact, virtual school has had an incredibly positive impact on the wellness of this entire family in such a short amount of time. We feel like the luckiest people on Earth. So many sacrifices are being made so Hillary can stay well.
Nine baby doves currently visit together each morning. I make sure there is enough food.
People continue to donate blood in Hillary’s honour to help with the critical shortage. Daddy gave last week. Uncle Denny gave today. I give again this month. Hillary makes two YouTube videos a day, and never forgets to mention how easy it is to #getswabbed, #giveblood, and donate to #makeawish. It’s now our official obligation to assist these causes, and we are honoured.
We also realize at this point that we are a bit of a social experiment. If Hillary were to contract COVID under the precautionary measures we’ve had in place for the last 18 months, I’d sound the alarm on the current epidemiology. Hillary has gone six seasons without illness or infection, and that’s without an immune system, with a sister in school…while sucking her thumb.
It’s not fear that drives me. It’s not control.
And I really don’t suffer fools well.
Like last Thanksgiving, when a relative held her mask off her face the whole time so she could talk to Hillary in my sterile, purified living room. Or last Christmas, when I sent our regrets by email and received the insensitive “family is important” response. That was the last time I bothered to explain myself by email or text. Those shallow experiences only made my resolve stronger. I never said anyone couldn’t visit — I simply insisted it had to be on my terms. I think that’s perfectly fair.
Hillary doesn’t deserve to be at risk while we decide what’s careful enough for her.
Just ask her. She is opinionated, well spoken, and educated on the topic. No shyness there.
We’ve had zero exposure to any indoor environments other than our home. We attend monthly hospital appointments wearing masks, visors, and behave carefully with frequent handwashing.
No haircuts. No patios. No stores. No exceptions. We get online groceries, do curbside pick-up, and masked drive-thru only. We wipe down our groceries but not all of them, and not all of the time. We stick with the same providers — always Moncion’s Grocer. We change our furnace filter every month and run an air purifier and dehumidifier — never a humidifier. Car windows stay up in town. Public washrooms are banned. We have window visitors but not backyard gatherings.
We clean a lot. Daily walks are mostly masked for Hillary to avoid dust from vehicles, dirt, construction debris, fungus, campfire smoke, and people. Her choice. We wear our masks at the same time for her. Our choice. We look back often. We always say hello and wave. Damp, windy days are met with extra caution regarding people proximity. We order Gabriel’s Pizza for Ollie. We pay online. We dress warmly to avoid catching the sniffles.
We skim the research, drill down where we can, and take the strongest advice. It affects every part of our very existence.
As if I’d take a relaxed approach. She’s one in a million.
We’ve adopted a clear stance as we face down the threat of COVID. We’re going to meet this beast head on. She’s gonna tell her T-cells to fight. We know we can avoid getting sick if we can control our surroundings. We know we have to have the right people around us to do that.
But our bubble — please don’t burst it.
The hospitals…please keep them open.
There are people IN this….and there are people completely out of THIS.
Our girls have friends in school. Playing competitive hockey. Swimming.
We have family providing essential services. Dining on patios. Hugging at birthdays.
Our colleagues are teaching in schools. Saving children from the darkest homes.
We go to hospital appointments. Open veins and pray.
This is where WE fall in the circle of life at THIS point in time. It’s certainly not where I expected to be. I don’t think I like it very much. But it’s from this stance that we will continue to present our best selves to ensure Hillary’s survival. No matter how severe the mental anguish feels from fear of the unknown, the only option is to completely sacrifice everything to make sure she lives.
It’s coming for her. During the darkest winter in human history. I’m not allowed to say it to anyone.
The birds know it. The baby cardinals are here too often.
Thank you for wearing your uncomfortable mask. For staying in. For protecting Hillary.
Please stay well, and stay with us.
It has been eight long weeks since our last update, and we have incredibly uplifting news to share with all of you who have invested hope in Hillary’s journey with Aplastic Anemia.
Hillary’s bone marrow biopsy and aspirate came back last week as 60% normocellular.
That is, not hypercellular (too many cells which could indicate cancer)…nor her previous 20% hypocellular (too few cells which means her aplasia persists).
This one is…normal.
Her blood test showed a rise in all three levels for the first time.
Her hemoglobin finally broke 100. (normal 110 to 130)
Her platelets grew from 114 to an at all-time high of 135. (normal 130 to 380)
Her neutrophils rose to .9 after a dip to .8. (normal 1.5 to 8.0)
All of the additional genetic tests came back negative. No dysplasia was detected. Her nosebleeds have stopped. Her pentamidine IV infusion has been stopped. Many other side effects are lessening more each day.
It’s considered a remarkable success thus far by her team of doctors. It was all smiles at our last visit, seen through kind eyes.
We truly feel one step closer to the miracle we are all desperately praying for. Her blood levels are rising despite the fact that she is weaning off the medicine (which is no longer at a therapeutic level). This is…perfect, essentially.
But, those neutrophils. They’re still so low.
Her overactive T-cells continue to attack and suppress her bone marrow, preventing the manufacturing of the one thing she desperately needs. Protection.
Hillary still has a long journey ahead before she can ring that remission bell. Upon inspecting the bell at her last visit at CHEO, she really thinks it needs to be fastened more securely to the wall before she gets a hold of it.
We agree completely.
First, she still has two more wean stages (30% reduction every 2 months) before she is completely off the cyclosporine immunosuppressant.
The day that she finally stops will be so incredibly nerve-wracking. This is the next possible crash point in this marathon towards remission. If her T-cells realize they’ve been tricked, they attack and destroy all of her blood production lines. We have to be able to recognize the symptoms (petechiae, lethargy, pallour) and be ready to go in at the drop of a hat.
According to her medical records, her last dose of medicine will be on December 24, 2020, Christmas Eve.
My head spins. How can that possibly be, to the date? What a gift that would be.
If she can hold — and she is a miracle so far — we undertake the task of having her numerous immunizations re-done since they’ve been wiped out by the immunotherapy. Her doctors may choose to test her blood for any remaining useful antibodies before beginning the vaccination schedule, or they may just give all of them again for good measure.
Then, the six-month mark following the cessation of medication is the next milestone to be achieved. That will mark two years of strict isolation. Hillary’s 8th birthday.
Maybe then she can ring the bell.
But she may be doing so with a new normal.
We are deeply grateful for the incredibly thorough, yet, laissez-faire approach of our lead Pediatric Hematologist/Oncologist, Dr. Robert Klaassen, who represents an entire team of professionals at CHEO working together, with us, to ensure our child’s survival. They are all quite impressive.
We all feel confident that the best treatment path was chosen for Hillary.
She goes back in one month for a dentist appointment and blood level check. She currently has four loose teeth — and a lifetime of dental work ahead of her.
We continue to use social media as a support system to help us navigate this rare condition. Every single human experience offers a sobering and valuable lesson on how we should move forward with this rare disease.
When we got home from the hospital last week, we learned that a fellow warrior lost her battle with AA. She was 7-years-old, and five months into immunosuppressive therapy. She had .9 neutrophils, just like Hills.
She’s why I won’t let up.
Hours later, an 8-year-old friend, Evie, had her only 10/10 match in the world (from Germany) pull out the day before transplant. They are now literally waiting for someone to join the registry so Evie can survive.
That someone could be you.
You could actually be Hillary’s match.
Our doctors affirmed last Wednesday that she might need one someday. There is just not enough documented evidence that this treatment can provide life-long remission. Bone marrow failures are extremely complicated, particularly the pediatric and idiopathic ones, like Hills.
But wow, have you seen the research being conducted in the area of T-cells at the moment? Daily studies are being published in mainstream news. In many ways, we feel extremely fortunate. The silver linings don’t go unnoticed or under-appreciated.
Still, not knowing if Hillary has a match is the most helpless feeling I’ve ever experienced. And it’s constant. We inquired again at our last visit and it’s just not the type of information we are entitled to have. It’s hard to sit back and wait.
Sooooooo… we won’t wait! We’re go-getters!
We vowed to #StartWithHillary and never stop helping to promote and diversify the global stem cell registry. We hope our continued efforts will help us secure a match in Canada, since the transportation of stem cells across borders has changed drastically since COVID19.
Awareness is everything. In helping ourselves, we are helping countless others. We are leaving a mark. Making a difference. It’s something to be proud of.
We just want to pack up the camping trailer, fill it with #getswabbed kits, and travel across Canada…going door to door. But Hills is not well enough. I can’t shrug it off or deny it.
So we do what we can, from home. Hillary’s offer to pay-it-forward to The Make-A-Wish Foundation continues, as they have extended their awesome #TheGreatMAWCampout for another week. The girls are busy making videos, and are always bouncing around in the trailer. I can’t help but notice these experiences keep opening up. These chances for the girls to shine. If you have 5.15 minutes, please watch Hillary’s latest video to thank Make-A-Wish Eastern Ontario. She makes one of these videos every, single day. Thank you for continuing to donate so that others can have a chance at experiencing some real magic, like Hills did.
Alyssa celebrated her 10th birthday by organizing and leading her own Zoom party with six of her BFFs. They painted together, played cards, ate cupcakes…saw each other. It was perfect in every way, and we are so relieved she didn’t want a parade. Or a trailer.
Together, Alyssa and Hillary represent hope. They see the darkness, but rise above it, every time.
They never let it change them.
I’m trying my best to be as strong as they are.
From a medical standpoint, not much has changed for Hillary since last month’s update.
She did not require a blood transfusion last week and her levels remain the same — stable, but still aplastic — with hemoglobin at 95, platelets 114, and neutrophils .9. She continues with her pentamidine infusion medication as a precaution until her neutrophils come up, and she begins another stage of weaning today, Canada Day, off her immunosuppressant.
But .9 is a record high for her white cells.
She continues with such a rare presentation: no major infections; no organ damage; low neutrophils; but, growing platelets. She could even do another course of ATG before a transplant, as our doctors continue to urge that an unrelated donor transplant is a last resort, especially now with the pandemic.
That rare presentation allows Hillary to give back.
To do some good.
To be a voice for others who can’t speak…or see.
And boy, does she have a voice.
Last year, while in isolation at CHEO, Hills completed a Make-A-Wish (Eastern Ontario) questionnaire. They asked her to describe and draw three wishes. Her number one wish was to ride Space Mountain at Disney World. We talked about it every single day — no days off. We watched Disney parades on YouTube for weeks and went to sleep imagining the sights and sounds we would one day take in.
We packed a bag.
It truly incentivized Hillary to work harder at getting better — affecting self care, nutrition, discipline….everything. We had promised her the world anyways, but this wish was a magical promise from someone more important than us…Make-A-Wish understood her.
Then COVID19 hit — travel was suspended and Disney closed. She never complained. When asked again, Hillary wished for “a big bag of money to give half to the homeless people…..or a camping trailer.”
Make-A-Wish couldn’t hand out a bag of cash — and the trailer was really too much for us to accept.
We had to give back.
We are so grateful to Make-A-Wish for nourishing the spirit in Hillary to be their spokesperson for their #TheGreatMAWCampout weekend campaign. They were beyond professional and understanding with our limitations as we tried our very best to represent.
It was a tough gig — we’ve already asked for blood and bone.
Yet, the girls took over another interview on CTV Morning Live and really got the message across, again. The interview was hilarious. We camped out and tweeted all weekend, and feel fiercely proud once again to have helped raise awareness for yet another cause guiding us on this journey.
It’s the least we can do.
There was a beautiful outpouring of support on social media. NHL buddy Anthony Duclair DMd Hillary a couple of times to wish her Happy Birthday. She told him #BlackLivesMatter and he appreciated that a lot.
Then NHL’s Nick Foligno came on board to support the campaign, along with some other very important advocacy heroes, like Ian and Sonia Mendes and family, CTV’s Patricia Boal…the OCSB’s Nicole Brooking, blood and plasma donor hero Glenna Gosewich….Ollie’s sister Abby, Micheline, Megan, baby cousin Freya, the Eggink family…………….
Thank you — on behalf of the 300 children currently waiting for their wish — for camping out and making a donation in Hillary’s name. She received a card for every donation and saw all of your names, just like a birthday party. It filled her up.
My list of beautiful people is so long.
Hillary was joyfully surprised on her birthday with a new tent trailer….to keep. It sounds really crazy when I type it out…more crazy when I look in the driveway. The video made by Alexandria Camping Centre to capture the moment is the most beautiful memento we could imagine.
As if that weren’t more than enough, Make-A-Wish also organized a birthday parade for Hills that evening. You 35 cars felt like 100 trains. It overwhelmed us….we screamed and cried and waved our hands in the air like we were on a rollercoaster — just like Space Mountain.
She says it was the best day of her life.
If you drove by and saw her crying, you must have come right after her former ECE drove by — Ms. D. It put her right over the edge…but they were happy tears.
For those who wore protective face masks for Hillary, please know that we still saw you as clear as day. What a beautiful gesture filled with unconditional compassion, love, and respect. Hillary noticed right away and loved it.
For those who didn’t wear masks in their vehicles while driving by, that is fine, too.
Not to wear our face masks for the parade was a difficult decision made after several family meetings over several days. Not only do we want to protect Hillary, but we want to continue to lead by example. But the parade was for Hillary. She knew it would make her overheat. We’ve experienced it all over the past year. It’s up to US to protect our family, and we were ready for all eventualities while outside, mask in hand.
Thank you for making signs, decorating your vehicle, taking that second lap to talk to Hillary, for honking, waving, smiling…Alyssa took photos of all of you…..we are working on our thank-yous. We are particularly grateful again to St. Leonard School for continuing to support Hillary on this journey.
Hillary has not left the trailer.
She takes her medicine in it and says her tummy no longer hurts. She thinks she’s all better, and we will not beg to differ.
It might be magic.
The next appointment in three weeks is a big one — the highly anticipated bone marrow biopsy and aspirate. This look ahead (inside her marrow where the blood is manufactured) will tell us if we’re on the right track. It will also tell us if her condition has evolved. It could tell us she’s in remission.
We still have so many options, and we are still hopeful.
It’s anyone’s guess when this miracle will happen.
I don’t know what’s next.
But I do know we are indebted for life to a very long list of organizations and individuals.
No amount of campaigns can ever even that out.
Thanks Ian Mendes for affirming that.
It has been seven weeks since our last update. We are relieved to relay that Hillary has been holding, not requiring any blood transfusions so far as she weans off her immunosuppressant. She has good days, bad days, and scary days, but they are days with us at home.
She continues to hover at around the same level — hemoglobin 96, platelets 109, neutrophils .8 — but that is on the incrementally reduced dose of medicine, so that’s a win. As a partial late responder, we hope that Hillary’s marrow continues to work at producing blood cells, and that her overactive T-cells stop destroying them.
A bone marrow biopsy and aspirate would offer a good glance ahead at her bone cellularity, which was previously 20-30%. It would also tell us if her condition has evolved into Myelodysplasia (MDS) — something we dread so much that we don’t discuss it. But, her biopsy was deferred from next week to next month, closer to the one year mark since her therapy began. We continue to be ever so grateful for CHEO’s conservative approach.
So, we wait.
While we wait, we keep busy.
We were shell-shocked to learn that Canadian Blood Services is actually running low on donations now that surgeries have resumed and social distancing guidelines have impacted donation procedures.
I never thought that would happen. Ever. It quite frightened me.
So, what do we always do when we’re scared here? We campaign! We crafted a new kind of wreath for our front door with some bristol board and smelly markers, took to Twitter to encourage blood donation during World Blood Donor Week, and did the best interview on CTV Morning Live. It was so nice to see Alyssa speak so confidently…very hard to see Hills yawning so much.
But, it worked.
Thanks Brian. Thanks Matt. Thanks Stephanie. For giving blood. The girls made you bracelets.
Then, just last week, Hillary graciously agreed to be this year’s spokesperson for The Great Campout for Make-A-Wish Eastern Ontario. To officially kick off this challenge and campout weekend, Hillary will be surprised with her wish on Friday June 26th, her 7th birthday!
That’s next Friday. I can barely event type.
Receiving her wish on her birthday offers another opportunity for healing for Hillary. She says her last birthday was the worst day of her life. We are extremely grateful to Make-A-Wish for replacing a sad, scary memory with a joyful surprise.
Hillary and Alyssa are having an absolute blast being involved with giving back in this way. A couple nights ago, we set up the tent and made a YouTube video together, learning iMovie for the first time. Deep learning. They make us fiercely proud.
So, in the spirit of spreading awareness for another worthy cause, to learn what Hillary’s wish is, visit Make-A-Wish’s website and get ready to see the girls in all their cuteness. The photos there represent greatly cherished memories for this family.
If you can’t donate blood, maybe you’ve got a wish to spare. Hillary’s friend Ollie has the exact same birthday. He’s holding out for his wish to swim with the dolphins in Atlantis, Bahamas. We can’t wait until he gets there. Alyssa is donating $20 in his honour. His mom holds me up. http://olliesbump.blogspot.com/
Like every parent does, we asked Hillary what the one thing she wants for her birthday is — other than some bone marrow, of course.
All she wants is a car parade, with all of you.
Please join us, if you can. Drive by at 6:00 pm on Friday, June 26 to see Hillary from a safe social distance, enjoying her Make-A-Wish with her family. Private message me for our address, or email Hills at firstname.lastname@example.org. NO presents. Hills says pay it forward with a donation.
Leaving no stone unturned.
Saying yes to every opportunity.
Maybe this will work.
We are overjoyed to share that Hillary’s blood has finally shown growth on all three levels. Her hemoglobin rose from 91 to 98, her platelets grew from 100 to 119, and her neutrophils climbed to an all-time high of .8 from .5.
This is the sign we’ve desperately been waiting for these past 365 days of isolation from viral, bacterial, and fungal pathogens — upward movement on all three cell lines. We are by no means out of the woods, but Hillary remains transfusion independent and out of the hospital.
Since her platelets have stayed consistently over 100 for the past three months, the decision has been made to begin weaning (or slowly coming off) her medication. We trust our medical team implicitly and agree this is the right path for Hillary at this time.
Things are moving fast again.
While the immunosuppressant (Cyclosporine) medication is the only thing keeping her overactive T-cells from destroying her own bone marrow, weaning allows us to see if the treatment has worked.
A proper shutdown before her miraculous immunity reboot takes effect, if you will.
We are now on Day 4 of the wean and are on high alert. It can cause a quick crash requiring a transfusion — fever, bruising, lethargy. Yesterday, Hills woke up with her worst headache ever and was violently ill for hours. Later, she wrote a song on her piano for Mother’s Day.
I’m not sure what today will bring. I have no idea if her platelets are holding.
I wonder if we’ll end up exactly where we were one year ago today — rushing her to the hospital in the middle of the night. If this wean doesn’t work, we go immediately to transplant. All of these coincidences make me feel manic.
For instance, I always knew I’d write. I’d sit and listen to my dear Nanny tell stories of the 1918 Spanish flu and I longed to put in on paper for her. It was so interesting…unfathomable. Who knew I’d be writing during another historic global pandemic. Strange.
Then my Poppy died of Myelodysplasia (MDS), a non-hereditary blood disorder that can emerge in old age and closely mimic Aplastic Anemia (AA). He was the reason I began organizing blood donor drives for Canadian Blood Services at my work, before I had children. In fact, without a transplant, Hillary’s condition can evolve into MDS. Doctors assure us it is mere coincidence.
Oh, and the COVID-19 pandemic: originating from a region with the highest incidence of AA; causing an immune response just like Hills; forcing the entire planet to live in isolation, just like us.
We were ready.
Alyssa and I watched Trump’s late-night address live on Twitter where he halted travel to Europe. The next day, I borrowed money to fill Hillary’s prescriptions, pulled Alyssa from school and inquired about truancy laws, and said goodbye to my parents with their last in-person grocery drop. I knew with certainty that I could also no longer mitigate the risks associated with Steve’s work, school, hockey, golf, meetings, lunches, retreats, celebrations (on top of the dust, spores, and bacteria) in addition to the new pandemic considerations. The world had to stop once again for us to keep Hills safe.
Two days later, Canada declared.
Then it was March Break.
Enforcing the right level of isolation has been a delicate balancing act, particularly over the changing seasons. I’m constantly calculating risks and always opting for the most cautious route. She’s one-in-a-million. I did not quite implement the full-blown bone marrow transplant recipient protocol, but I adopted many of its elements. Then I implemented them for myself. Alyssa wasn’t far off.
It just makes sense, and Hillary has remained infection free for one whole year.
We don’t go for scenic drives. If we get into an accident, Hills doesn’t have a fair chance.
You will see us out walking down our street, but we wore our masks last year on our walks. We also have exceptional neighbours.
We aren’t having fun eating out. We ration our food to save money and eat farm-to-table as much as possible with a quasi-neutropenic diet in play.
I haven’t had a glass of wine in three years; and I love wine. I’m staying alert. No breaks.
One thing is for sure — isolation began the moment that phone rang in the middle of the night on Mother’s Day. It had to. No haircuts. No driveway chats. No body. There’s no temporary lockdown, quarantine, or social distancing — it’s #survival. I’m no martyr. She depends on me.
One whole year later, we cling to the hope that Hillary’s little body can achieve remission…or better yet, spontaneously recover, never to see this rare disorder again. I think that’s why I was so desperate for a signal boost for her from a celebrity on Twitter. I fantasized about how an adrenaline boost might jolt her immune-system into proper functioning…forever.
Lately, Hillary has been feeding a chipmunk before doing her medicine which she often vomits and has to retake. Last week, a blue heron landed in our yard just after Hillary bled from her ears. At night, we hear the buds growing on the trees in our forest backyard while we manage night sweats, headaches, and nose bleeds. It’s challenging, but extremely peaceful here in our first family home.
We really have no choice but to live in the moment. Hillary makes that possible. Her positivity is not a gimmick. She lifts us up. You should see her homemade YouTube videos. I have not had the heart to post them.
Please pray for her to stay strong. She is working hard and is very proud of herself.
At our last appointment, there was no mention of transplant.
This has to work. Right now.
She goes back to CHEO in a month for a bone marrow biopsy and pentamidine treatment.
This is Hillary’s Life List. It’s just the beginning.
Ride a bike without training wheels.
Make dumplings from scratch with someone old.
Jump in a ball pit.
Visit my old daycare.
Buy glitter. A lot of it.
Watch Monarch butterflies break free from their cocoon.
Get some really good black lipstick and wear it.
Jump in a muddy puddle.
Learn how to ballroom dance.
Talk to YouTuber Rebecca Zamolo.
Drive in a Tesla.
Go to a bone marrow drive.
Dance on a rooftop patio.
Spend the day in Mommy’s office at the OCSB again.
Swim in a public pool and make sure an ice cream truck comes by.
Go to Bora Bora.
Revisit my school fairy garden spot.
Spend the day at the public library.
Take a sleeper train.
Attend Midnight Mass.
Go to an Ariana Grande concert.
Release a live dove.
Pick garbage out of the ocean.
See the ocean.
Be a Girl Guide.
Get mailed in a box somewhere.
Wear a watermelon bikini.
Write a global anthem.
Visit the hidden 7th floor of CHEO.
Go strawberry picking.
Take gymnastics lessons.
See inside the house at 6357 Emerald Links Drive.
Save the planet.
Get an oxygen swimming pool, for my blood.
Pet a pony.
Go to Comic-Com.
Wait for a city bus in a bus shelter.
Go through a homemade Halloween haunted house.
Play with golden retriever puppies.
Get a PC to play Minecraft.
Play with a big bucket of slime.
Mail some slime to Rebecca Zamolo.
Do a paint night with my mom, dad, and sister.
Sleep in my bunk bed at Waupoos Farm again.
Break boards with a karate chop.
Run in a marathon for Aplastic Anemia.
Wear cut off jean shorts.
Get a service animal.
Eat from a food truck.
Watch a movie outside and kiss someone.
Ride Space Mountain one more time.
Double everything above for my sister.
Ride a school bus again.
Ring the bell @CHEO that says I beat it.
Enjoy the time it takes to plan your life.
It has been 10 months since Hillary began living in isolation — the only way to stay completely safe as she battles this rare blood disorder called Aplastic Anemia.
Her monthly blood test showed a rise in platelets from 97 to 100 — a number we went to bed dreaming of the night before. But, her neutrophils fell from .7 to .6 and her hemoglobin also fell for the third month in a row from 107, to 98, to 93.
Still, this is very promising.
Hillary continues to thrive at home. This morning, she woke up with rosy cheeks and a big smile. She really does look better. Different, but better. Each day has its own set of health challenges, but nothing we can’t meet and treat with time, patience, and the right supplies.
Thank you for your continued support and inquiry.
Please think of her as very happy and know that she is well taken care of. She thinks it’s just absolutely fantastic that the world is staying home, just like her.
Hillary and I go back (alone) to CHEO just before Easter for another blood level check, her pentamidine medication infusion by IV (to prevent bacterial pneumonia, not viral), and a serious discussion with our team of specialists. Please know that Hillary’s lungs have always been incredibly strong and healthy. Hold that close to you.
Preparing for our next appointment is intense. We are comforted by the measures put into place thus far by CHEO. They are doing an exceptional job.
We continue to watch the unfolding of the current global pandemic, COVID-19. Hillary falls within a vulnerable demographic — an immunocompromised patient with a hematologic disorder — but for bacterial and fungal infections as well as viral. Any one of these three infections would put her in danger, at any time.
Imagine being in isolation, and then imagine being in isolation within that isolation.
Yes, it feels a little perilous at this time. (I write as I laugh maniacally)
The blood bank is running low. If her oxygen goes below 70, she will need another blood transfusion. Blood has a shelf life.
Hillary is two months overdue with her immunosuppressive treatment plan, and it’s beginning to show a slight increase in liver, kidney, and ferritin levels.
We’re not yet sure what direction will be recommended to us by CHEO. It’s a complex decision. But, her prolonged neutropenia (lack of white blood cells) is concerning, especially now.
Stem cell transplants from unrelated donors have been postponed all over the world…some proceeding, and some being switched to half-matched sibling transplants instead.
Most likely, we will do some more waiting while continuing our effort to keep her infection-free and out of the hospital. We just have to keep doing what we’ve been doing.
And yes, social distancing works.
You may be branded an alarmist. It will impact the life you thought you knew. You will see the selfishness — and selflessness — of others in ways that you were indifferent to before.
I feel so proud to have been persistent with Hillary’s care.
So many times we sat in the parking lot weighing the risks of going in.
There was always a better choice.
The better choice is life.
In a way, what is happening here is what I’ve always dreamed of. To be together — just us, our family unit — without obligation except to better ourselves while enjoying, and protecting, God’s creation. I just can’t believe we are dangling so precariously close to the edge.
I am not going to preach. All of the things I wanted to say, the lessons I wanted to bestow, the changes I wanted to fight for, the resources I longed for, the financial help we needed….the world is doing it for us…..like footprints in the sand.
Thank you to the angels that fly by on Twitter every hour from people donating blood to Canadian Blood Services (the safest place to be right now), working the front lines in the hospital (like my hero neighbour Michelle), and promoting ways to #FlattenTheCurve. Please keep up the good work doing this in the most reasonable ways you can. My only brother and his beautiful wife are both uniquely essential service….and I have no words.
This has not weakened us. It has unified us. We are strong.
Please dream of the number 120 for Hillary.
Check out Hillary on 1310 News with host Sam Laprade, where Hills talks about making sure others have beans and lettuce during this difficult time. Click here, and then select the March 20, 2020.
At her last appointment, Hills met Katie Perry, a CHEO superstar.
Hillary is holding well and we are unbelievably grateful.
This month’s check-up showed an increase in neutrophils from .6 to .7, an increase in platelets from 87 to 93, and a decrease in hemoglobin from 102 to 97.
This keeps her in the Moderate Aplastic Anemia (MAA) category, and best of all, transfusion independent and out of the hospital.
This was a big appointment. The six month mark.
After a thorough discussion with the lead hematologist to review risks and desired outcomes, we agreed with CHEO’s recommendation to continue with the current immunosuppressive therapy treatment for another two months.
Hillary has not yet achieved remission, but she has also not relapsed.
This is the highly delicate balancing game that is Aplastic Anemia. It’s all about staying alive.
Standards for weaning off the cyclosporine medication differ greatly across the globe, and these standards change often as new research emerges. Current protocols recommend beginning to wean now, at six months.
But, not surprisingly, Hillary continues to present as exceptional. Where many others hit a wall, Hillary just keeps jumping the hurdles, remaining off all other medications and avoiding treatments. Her body is tolerating it well and showing signs of blood growth.
It just means more waiting.
While we wait, we continue to advocate for the global stem cell registry.
I can’t believe that the kids and I went door-to-door to ask people to sign up. I can’t believe my brother drove around the entire city for weeks dropping off flyers. I can’t believe over 630 of you showed up that day, and another 400 went online to sign up.
I can’t believe how many were guys.
I can’t believe I didn’t remember that until now.
I can’t believe how desperate this feeling is.
I can’t imagine what it must feel like to not have a match.
Hills has been very busy on Twitter promoting the most recent stem cell drive event on February 13 at the Children’s Hospital of Eastern Ontario (CHEO). Another 86 brave people joined for Sue, a CHEO nurse with Aplastic Anemia whose life was saved from a bone marrow transplant. Our girls made little flags for everyone who got swabbed. CHEO continues to show us why they are a world-class hospital.
The next event is at Notre Dame Catholic High School on March 5. This one is for Dawn and her son Ollie. Dawn reached out to us very early, simply as a mom of two who felt our pain. Who could know that months later, her son Ollie would fall suddenly ill. He is now on the same desperate path to find a stem cell donor to cure his Anaplastic Large Cell Lymphoma, since his sister was not a match.
We are not alone.
We celebrated the six month milestone as we do with every level check — with a modest, healthy, home-cooked meal…together. When you’re this close to the edge on so many different levels, having food, and being able to eat it is…well, I am extremely grateful. I can’t imagine not being able to feed my kids.
Thanks Nana and Baba for not making us have to choose between groceries and bird seed as we buckle down for the long haul. Those who have visited here know it’s like Snow White’s backyard. It’s as if this house was made for this fight, and these birds….they make us feel human.
That’s Alyssa, the night before Hillary’s check-up, losing a tooth. She’s as lovely as ever — calm and conscientious. She’s proof of the resiliency children possess, and we are fiercely proud of her for getting on that school bus every day, never a complaint.
We have worked very hard to not feel sorry for ourselves.
It’s a skill I never had to hone for myself, or my kids, until now.
Waking up with the birds helps.
And so, we push on.
It’s been over four weeks since our last update — the longest Hillary has ever waited for a blood test since being diagnosed with Aplastic Anemia nine months ago.
There were a couple days there when we really weren’t sure if she had enough. Making the call not to bring her in has been trying, particularly with the accompanying nosebleeds, pallor, fatigue, vomiting, headaches, and low temperature.
It really tests your faith…in God… and science.
Yet, Hillary continues to thrive at home, with special accommodations, in isolation. Isolation itself is not hard. It’s keeping everything out that is the challenge with this record-breaking childhood-influenza-year we are having.
Hillary’s out-patient visit this past Wednesday at CHEO was busy but overall positive. She received her anti-pneumonia pentamidine medication infusion by IV and her bloodwork showed another sign of growth.
Her hemoglobin stayed the same at 98 (normal is 110-130), her neutrophils remained the same at .6 (normal is 1.5-8.0), but her platelets grew from 76 to 87 (normal is 130-380).
She did not require a blood transfusion, and her liver, kidney, magnesium, ferritin, and blood pressure levels remain within normal range. She is now out of severe (SAA) and back in the safer moderate category (MAA) for the disease. She is doing exceptionally well, as usual.
This is classified as a promising response at five months post hATG treatment. Some take up to a year to recover to a normal range. Her cyclosporine medication level is again below the therapeutic threshold, so we have just increased her daily dose. Due to this, the past couple days have been more challenging. Hills is working hard again to stay well. But we have to get that level up.
We have to kill more of her overactive immune system to allow for regular function.
And so, the question lingers as we get closer to the six month mark. Is this genetic or auto-immune? Even though the treatment path would have been the same as it is now — in the absence of a sibling match for immediate transplant — I have to at least try to connect the dots to prepare us for what lies ahead.
Being pregnant with both Hillary and Alyssa was joyous. I had zero complications and both girls were born naturally on their due dates. That never happens. They were perfect.
But on Hillary’s fifth day of life, Canada Day 2013, something unexplained happened.
After spending her first day outside, I lay Hillary on her pink floor mat in the living room while I cooked nearby. It was a quiet day with a newborn at home. It was blissful. I looked over to check on her since she had been sleeping for a couple hours already, and her legs looked blue. I tugged firmly on her leg, and all of her colour came back. She looked fine. Maybe I imagined it.
But she was sleeping.
And nothing I did could wake her. I clapped my hands, pinched her legs, poured water on her head, tried to feed her…she just kept sleeping and breathing.
We took her to CHEO.
After driving in and waiting to be seen, she had been asleep for 10 hours, too long to go without feeding. The very minute the doctor slid the door open, Hillary woke up. They looked her over and told me to appreciate a sleeping baby. We agreed with their balanced and appropriate assessment. We drove home very quiet in the fireworks.
After that, Hillary was great. She never, ever got sick. We always thought we might have saved her from Sudden Infant Death Syndrome (SIDS).
Three whole years later, in 2016, Hillary came into contact with a sibling of a newborn with confirmed hand-foot-and-mouth disease — indirect contact. That night, she developed a fever, and spots started to appear on her hands and feet. For four weeks, she fought a seriously scary case of the normally harmless condition. She was covered, but not in any pain whatsoever.
Major infection number one. Viral.
Two years later, in 2018, a dental exam revealed four seriously infected molars, and Hillary had to undergo “baby root canals” and crowns by a pediatric specialist. She has since had two of these teeth pulled to prepare for possible transplant. She has never had teeth pain.
Major infection number two. Bacterial.
One year later, Mother’s Day 2019. A hunch led us to insist on a blood test due to some bruising, resulting in the diagnosis of Aplastic Anemia. Immunosuppressive therapy begins and simply by the sheer number of times her intravenous line was accessed for medicine and blood transfusions, she developed a central line infection, keeping her in the hospital for 27 days.
Major infection number three. Bacterial.
I’m not sure what this is.
But if the illnesses continue to grow in complexity, well….I’m bracing for impact.
There is no confirmed research correlating the type of event experienced on Hillary’s fifth day of life with the onset of AA. In fact, there isn’t much research on aplastic anemia at all. Yet, her condition remains idiopathic, or of unknown etiology. While I remain desperately hopeful that this immunosuppressive treatment will work, I’m merely trying to take a peek at the path ahead by looking into the past.
Hence, my desperate plea for those willing and able to join the global stem cell registry. This truly is a global issue, and we have the unique opportunity to save lives while combating the increasing number of immune related ailments which benefit from stem cell donation.
Hillary right after her last appointment, making her cherry celebration cake.
She is still very active on Twitter @StartWithHills promoting the global registry. She sent a song along to Linda, a Montfort Hospital (Ottawa) employee who has been waiting for over a year for a stem cell match. She has been given three years to live if she doesn’t find one. The Bruce Denniston Bone Marrow Society held another stem cell drive in Linda’s honour at the Montfort Hospital last week.
February also looks busy for this hero organization, who works with Canadian Blood Services to hold swabbing clinics all over the city of Ottawa. The next #getswabbed event in Ottawa will be at CHEO on February 13, from 3-7 pm at the Children’s Hospital of Eastern Ontario (CHEO).
And so we wait, and remain highly vigilant. Another four weeks will bring new blood results, and new hope.
Caring for Hillary now is much like having her as a newborn again. We continue to empathize and pray for those in difficult circumstances, and hope for strength to make it to the next step in this journey. We want Hillary to be joyful.
Please tell someone new about Hillary. Tell five people. Tell someone of a different ethnicity.
Tell them she loves to play Lady Gaga on her keyboard with her school ECE Ms. D. via Facetime.
Tell them she loves puppet shows before she falls asleep.
Tell them to join the global stem cell registry.
It’s been a month since our last update…eight months since we found out Hillary had Aplastic Anemia. We are so pleased to have wonderful news to share with you just before Christmas.
At Hillary’s appointment last week, her blood levels again showed an increase, and she did not require a transfusion. Her hemoglobin rose to 98, platelets to 73, and neutrophils to .6. Still all below normal levels, and still quite low in the white cell count, but increasing nonetheless.
We are overjoyed to be able to have Christmas at home together.
When Hillary left the hospital, she ran to the car in the light falling snow with tears in her eyes yelling, “I feel so alive!” It’s forever ingrained in my memory.
Thank you for all of your thoughts and prayers. Your positive energy. Your inquiry and support. Your open minds and hearts. Your prayers for Hills.
We know we are not the only ones facing difficult circumstances during this holiday season. We also have many Aplastic Anemia friends who won’t quite make it home this Christmas.
We can only hope that sharing Hillary’s story helps you feel gratitude for the blessings you do have. We catch ourselves saying how lucky we are all the time, and we truly do feel that way, even now.
Please feel alive with Hillary this Christmas. Don’t waste it.
We dare you not to smile while listening to Hillary in today’s radio interview.
Hillary's radio interview from December 23 - 1310 FM, An Hour to Give with Sam Laprade, CFRE
We met with CHEO specialists this week regarding Hillary’s progress battling this rare disorder. We were all pretty nervous, and I want to acknowledge the Social Workers at CHEO for supporting us on this journey.
Hillary had some bloodwork done, along with another two hour IV infusion of pentamidine to prevent pneumonia. But she remains transfusion independent. This is wonderful for her. Her blood production levels continue to show promise. In two weeks, her hemoglobin went from 89 to 91, platelets grew from 55 to 63, but her neutrophils fell from .6 to .4.
Her strange PNH clone remains the same at 3%, and her cyclosporine medication level has fallen below the therapeutic threshold, so we have to get that number back up as a matter of priority. Clearly, we are not out of the woods by any means, but this is promising at 3.5 months post ATG treatment, nevertheless. The transplant centre at SickKids in Toronto continues to monitor Hillary and is also pleased with the response thus far.
Since her neutrophils have not made the climb into the normal range (the white blood cells to fight off infection) we remain in isolation. We still get outside every single day for fresh air, and plan strategic outings (while wearing masks) to minimize germs. There’s nothing like being the very first one in the library doors. To balance it all out, we stay social using Google Hangouts and FaceTime. We think it’s a good strategy in this day in age, and it’s working beautifully.
We head back to CHEO back in three weeks, the longest stretch of time without measuring her blood levels. We now strive for normal levels at the six-month mark — February. We continue to be so grateful of the moderate presentation of this disease. The complications others are experiencing with this disorder are unbearable and too triggering to share.
Life continues to be busy and challenging for us, but it is for everyone else. Everyone experiences health challenges, time conflicts, and life changes. And some people are doing it completely alone, or often without the support of their family.
We firmly believe that the love that surrounds Hillary, from all over the world, helps lift and carry Hillary above our heads while she heals.
And so we press on and remain vigilant.
The rest can wait.
Thank you for your continued prayers.
We are happy to report that Hillary’s out-patient visit last week was short and uneventful since she did not require any transfusions! This is a big deal. Her hemoglobin rose from 80 to 89 on it’s own, keeping Hills above that critically low 70 threshold. Her platelets saw a small rise from 49 to 55, and her neutrophils remain low, moving from .5 to .6. Overall, this is a favourable response at Week 12.
During her visit, Hillary received her flu shot as recommended by CHEO and had no adverse reactions. We were not a flu shot family prior to this diagnosis. Everyone close to Hillary is now getting it to keep her as safe as possible.
Hillary is doing exceptionally well in all areas.
She says she thinks her immune system is finally coming back from its long vacation. We celebrated the three-month mark with our favourite home-cooked dinners (yes, four of them) and a cautious trip to the quiet Ottawa Art Gallery, which she had never visited. It was really good to get out, despite the risk.
Our discussion with the specialists at CHEO was delayed by two weeks, so we just keep hoping her numbers continue to climb while we work to ensure she remains infection-free. We are still waiting to see if her mysterious PNH clone has increased in size, and if her ferritin level is decreasing. Every day, we are presented with a strange new set of symptoms, but they are all minor compared to the struggles others are facing.
I’ve spent a considerable amount of time looking back…however useless it may be….going through every photo since her birth and charting/analyzing her health timeline. Since her condition remains idiopathic (or for unknown reason) there is always that lingering question: Is it genetic or auto-immune?
I think it all started on Day 5 of life -— a day I remember vividly. Or maybe it was 2016 when she caught that virus. Were her teeth problems caused by the anemia or did the anemia cause the teeth problem? When you map it out, it’s all so interesting and interconnected. Some of it is truly unbelievable…as in, I’m having a really hard time grasping reality.
I will share more, when I can, and will be sure to update you all before Christmas. We’re not sure what Christmas looks like for us yet, but we know that we just need to stick together and stay positive.
We are extremely grateful to have Hillary home and feeling well.
And so, we wait.
Life remains on hold.
Check out our sweet Hills in March 2017 at the young age of 3. She’s always loved YouTube.
We would like to share some good news with our family and friends following Hillary’s journey.
Hillary is showing a partial response to the immunosuppressive therapy after ten weeks. Her platelets grew on their own from 17 to 49 (normal is 130-380) and her neutrophils went up slightly to .5 (normal is 1.5 to 8.0). Her hemoglobin has yet to start increasing on its own (still at 80 and dropping), and another blood transfusion might put her into iron overload, so we are really hoping to see a rise in oxygen this week.
To celebrate, we fixed up her room with an air purifier, salt lamp, bed rails, and her keyboard and she’s back to sleeping in her own bed (with mommy snuggled in close). It gave her back some balance and much needed independence. She is feeling amazing….confident, secure, and happier than ever.
Next week marks the three month mark since immunotherapy began. This is when we discuss options moving forward. This is when we are supposed to decide whether these early signs of blood production are good enough to continue trying with the therapy, or if we should proceed to transplant.
This is when the search for a stem cell donor would actually begin by the hospital we ultimately choose for the procedure — Montreal or Toronto. If you’ve been told Hillary has a match, you’ve been misled. Hillary remains at the mercy of time and the selflessness of some other human being to see if a match will be there for her when she needs it.
Stem cell drives in Hillary’s name continue to be held in schools/universities across the globe — Edmonton, London, Toronto, France, Ireland — giving us hope and encouragement. I personally think it’s A LOT to ask someone to donate any part of their living body, so to see thousands of people mobilizing to hold these events is incredibly uplifting.
Are we headed to transplant? Will there be a match for her? Will they still be willing to donate? Will they pass the physical? Will they be a perfect HLA match? Will they be willing to donate again if the first transplant fails? Will they have antibodies that will complicate the procedure? Will Hillary survive a transplant? All unknown.
We do not have a match for Hillary, but we don’t want one. We want this therapy to work.
If we continue with the therapy, we should see Hillary’s levels continue to slowly increase. She would hopefully start attending school in the Spring when her neutrophils are in the normal range, and she would continue the medication for another year before being slowly weaned off.
If she is weaned off and her levels stay stable, she will achieve remission…possibly lifelong remission with no further complications or limitations. But if her blood levels start to drop from this point forward — over the course of this lifespan — we head to transplant. She may not need a transplant this month, but she may in a year, two years — maybe ten years.
And life? Well, it keeps happening. Alyssa was sent home from school on Halloween with a suspected broken arm and spent the day at CHEO and a couple days at home. The well has finally been repaired and the water has been retested, but two weeks without safe water was ….cosmically disturbing. Winter is coming…..and so is the flu. Please show your love for Hillary by getting the flu shot and staying away if you’re sick. She’ll be the first one to respectfully tell you to stay out of her bubble.
Most mornings, the height of the wall appears far too tall to even try and climb, for me anyways. But the kids….they jump out of bed as if every day was like a gift or something. They rub their eyes not to remove the evidence of sleep but to brighten their view for the fun day ahead. They don’t stop. They are resilient and fearless.
Each day is a celebration of life as we work at essentially surviving this rare illness they call “the beast.”
This is a big week coming up. Please pray for Hillary.
It has been five months since Hillary was first diagnosed with Idiopathic Acquired Severe Aplastic Anemia with PNH Clone, and we are now in Week 10 of isolation for her immunosuppressive therapy treatment.
She is doing very well. She is happy, active, eating well, and still singing.
She continues with her daily cyclosporine medication twice a day, along with anti-pneumonia medication (Pentamidine) intravenously every two weeks since her neutrophils (white cells) are almost non-existent at around .3. She remains highly vulnerable. Prolonged neutropenia is of great concern with this condition.
Hillary continues to present as rare and does NOT require blood pressure medication, magnesium by IV, anti-fungal prophylactics, or frequent blood and platelet transfusions like so many other patients do. In fact, her platelets grew on their own from 17 to 32 in the last two weeks, which is extremely rare and promising.
Still, her hemoglobin continues to drop, and she has been struggling these past couple days with fatigue, irritability, and a high heart rate. We are headed in to CHEO for a transfusion, just in time for Halloween.
We take zero risks.
Supportive care plays a large role in remaining infection free. We follow the numerous guidelines established by our medical team, but also do so much more in our desperate attempt to keep Hillary as healthy as possible. It means saying no to a lot. I hope we end up being proof that it might make a difference. She is just doing so well.
This past week has been particularly….challenging.
The line from the water well to the house broke (after 12 years) so I’ve been driving two hours a day to and from my parents’ house to give Hillary an epsom salt bath. Staying clean is an integral part of Hillary’s recovery since a common bacteria could prove deadly. Living with the possibility of groundwater contamination for a week with a severely immunocompromised child is like walking circles in Dante’s inferno. Quite the lesson in resiliency.
Thank God I’ve come to embrace some of the adversity experienced early on in this diagnosis. Some of the darkest times now seem so meaningful, so necessary — they happened to keep her safe and protected, and for that, my eyes are wide open. Blessings in disguise. Watch out for them.
I’ve also come to appreciate the power of social media. Since day one, I’ve been a member of a Facebook Aplastic Anemia support group which allows me to navigate this rare disease — in real time — along with 3,000 other “fighters” from all over the globe. It is powerful. Every test, medication, symptom, reaction, level, outcome….fear….I can talk to people all over the world before making an informed decision about our care for Hillary. I’d feel pretty alone without it, particularly since there is a significant lack of current research on this rare disease.
Sadly though, I’ve already witnessed four families lose their battle in a few short months — half of them because there was no stem cell match available in the global registry. One fell through at the last minute when the donor failed their physical exam.
After holding stem cells drives in Hillary’s honour at several universities last month (Carleton, Ottawa, Brock, and Guelph), there is another one coming up on November 12 at Algonquin College. This date marks week 12 of treatment…the week we hope to see a rise in all three levels. Another meaningful and moving event in support of Hillary and others in her situation.
Thank you for all of your words of encouragement over these past months. Just because we can’t come to the party doesn’t mean we don’t like being invited. Thanks to those inviting us to stay in the game of life, and for totally understanding when we say no. Hillary enjoys FaceTiming her friends and family and is making the best of her situation.
She met with the Make-A-Wish Foundation who gave her some awesome gifts and told her they are excited to make her wish come true! Wondering which wish gives her so much hope and encouragement.
We had a wonderful turkey with all the trimmings on Thanksgiving at home, just us.
We went and voted together with “McKibbin pizza and park” afterwards, our little family tradition.
The girls are going as creepy porcelain dolls for Halloween. We’re so proud.
Alyssa is good. We are all working very hard to keep balance for our sweet Alyssa, and it’s working. We won’t let up.
Every single night, I lay beside Hillary, holding her, waiting for her blood to grow. I watch her chest move up and down. I hear her dreamspeak. I pray on her. Today is fraught with complications and challenges, but at least we are here to conquer it together.
It’s all just strengthening our armour.
We will win this war.
We’re keepin’ her.
Two weeks ago, Hillary proudly walked out of the hospital and into her cozy home. The first thing she did was march straight up to her room to play her keyboard.
The first week back was challenging. Her sister Alyssa caught a small cold and had to stay home from school…and then Hills got sick. But, her doctors are encouraged that her body was able to fight off the minor cold on its own.
Hillary is now six weeks into her immunosuppressive therapy treatment. She received another hemoglobin transfusion last week, and her platelets have remained “stable enough to sustain life” without a transfusion. She was also given pentamidine, a medication given by inhalation which she will receive monthly to prevent bacterial pneumonia.
Her doctors gave us just a couple of other rules to follow.
No school. No large gatherings or crowds. No animals. No gardening. No mold. No sun. No contact sports. No rough play. No swimming. No physical exertion. No construction sites. No travel.
Don’t be around anyone who is sick (or has been sick recently), and if you must have people in the house, limit it to one or two at a time. Don’t go near daycares or hang around other kids. Enforce herd immunity and have everyone around her get the flu shot.
Be extremely careful with food preparation. Have her wear a mask when you go out. Put a bottle of hand sanitizer in every room, and use it often. Dust often, and keep everything very clean. First sign of fever, head directly to the emergency room.
She knows every single rule, and advocates for herself. She does not feel sorry for herself. She is a fighter. She is amazing.
Her doctors also told us to get plenty of fresh air, eat well, and be joyful. And, so that’s what we’re doing. We go for daily walks with our hats and umbrellas. We cook farm to table every day. We adoringly put Alyssa on and off the bus and make her feel special. We sing, dance, craft…snuggle. We are very busy decorating for Halloween. This year, we are going all out with a scary, not a cute Halloween. I think it’s safe to say we’re all pretty fearless now.
It will be 12 weeks on November 12. This is when we want to see her numbers go up — her hemoglobin, platelets, and neutrophils. These are the three blood components that are suppressed by the aplastic anemia. To give you an idea of where we are at, in simplified measurement terms:
- A normal range for hemoglobin (red cells/oxygen) is 120-150. Hills presented at 48, and sits between 70-100 now with regular transfusions. Her heart beats fast.
- A normal range for platelets to clot her blood is 250 to 450. Hills currently has 10. She can not bump her head.
- A normal range for neutrophils (white cells) to fight off infection is 4.3. Hills is around .2. She can’t get sick.
She basically has no immunity of her own. Interestingly, she will have to get all of her childhood immunizations over again. The current measles epidemic has me a little shaken.
Sorry that when you see her, she looks perfectly fine and approachable. She is not. Let me protect her.
Sorry to St. Leonard Catholic School that we could not come inside the school to see the 1,000 paper cranes that were made to pray for Hillary. Thank you Mme. Roy and Ms. Lalonde for organizing such a beautiful gesture of community. We were moved beyond words.
Sorry to all those coming out to join the stem cell registry in Hillary’s honour… that I can’t be there to meet you. That’s been hard. Thanks to Nicole Brooking for going and shaking hands on my behalf.
Sorry to all those who want to help, but feel helpless. I can’t have you over. I don’t know what to ask you for. All I can do is follow the rules to protect my kids. I can’t focus on anything else.
Sorry, sweet Alyssa. Sorry I had to cut your bangs in the CHEO bathroom the night before school. Sorry you have to bite your tongue when things are unfair. Sorry you’re scared. You’ve been the best big sister, and daughter, we could have ever hoped for.
I’m not strong enough to put it in writing.
Let’s beat this thing and then jump in a muddy puddle together.
Check out Hills on KISS FM 105.3 with her favourite radio host and advocate, Amy Volume, a person who really understands.
Hillary is going home tomorrow, after 27 days in isolation. We are ecstatic. We can’t wait to sit in the backyard. Cook. Walk up and down the stairs. The simple stuff.
Hillary received a hemoglobin transfusion yesterday and will receive a platelet transfusion tomorrow to prepare her for discharge. Thank you anonymous donors. Hillary’s neutropenia remains severe at .1 so we won’t be taking any chances with germs or infection. This is such a peculiar and rare condition — one that requires constant vigilance.
So for now, it’s just a waiting game. We continue the am/pm cyclosporine medication at home, and visit CHEO twice a week for blood tests. She will need several more transfusions, but one day, at around three months, that blood test will come back with the news that she is producing blood on her own. We’ve visualized it. Drawn the picture. Written it down as an affirmation and framed it.
Reflecting on our time here, with these emotional blog updates and our quest to increase the stem cell registry, we’ve come to believe that Hillary was chosen for this. Chosen just like the rest of the kids here at CHEO — to teach the rest of us a thing or two about life and how to live it.
The fight isn’t over. The game has just changed. We now have the home advantage.
This blog post would have been unfairly difficult to digest before the joyous school start-up earlier this week, so we’ve waited a little longer than usual to update you all. Since then, things have indeed improved, but our sweet Hillary still needs your prayers and positive energy.
We were expected to have been done with the first stage of her immunosuppressive therapy treatment after eight days, but it is now Day 19, and Hillary and I are still in isolation at CHEO, with another 14 days to go…maybe longer.
It’s difficult, but not a surprise. My connections with other strong mothers fighting this rare disease alongside their children provided advanced notice of the complications that would inevitably arise. They warned me this journey would be extremely long and arduous — almost impossible. I was ready.
The past two weeks have been very challenging for Hillary.
She has endured unimaginably painful headaches, violent screaming steroid rages, CT scans, ultrasounds, a heart echo, daily blood cultures, hourly IV medication infusions, cups full of pills, fevers, night sweats, swelling, and several platelet transfusions. Her blood pressure is all over the place and and her organs are working hard. She was in a morphine sleep for four days straight. She did not look or feel like herself.
Hillary’s headaches have finally become manageable after three adjustments to her medication doses. But on Hillary’s scheduled discharge date, she developed a staph infection in her blood. When the overnight attending physician woke me in the middle of the night and took me outside to talk about Hillary’s blood culture coming back positive for “gram positive cocci” — that was my darkest night thus far. I thought I was strong up until that point. Not so.
It’s quite common to develop an infection while your immune system has been essentially wiped out to nothing with this treatment. Some infections are worse than others, and some you can’t come back from. We are just relieved that the blood infection has been identified, and is being treated with the proper antibiotics. The infectious diseases team is involved daily and we strive to attain that coveted negative daily blood culture. It’s coming.
We are very fortunate to have CHEO’s diligent team of doctors, fellows, and nurses springing into action every single day for Hillary, because every single day brings with it a new challenge. A small fever is treated as an emergency, and every night is sleepless. Hillary’s room is a revolving door. She entertains around 15 different medical specialists each day.
We need to get a grip on the headaches, the infection, but most importantly, the aplastic anemia. Hard to explain to a normal six year old….. but not Hills. She gets that no matter how much it all sucks, we absolutely have to push through, and take our medicine even when we can’t open our eyes. She is astonishing. I’ve seen Hillary during her strongest fight response…. no filter. She is a hero and an inspiration — there is no doubt about it.
As of yesterday, Hillary has turned a corner and is now singing again.
You wouldn’t believe how resilient she is. She used the self-regulation exercises she learned in Kindergarten at St. Leonard School to breathe through the pain of her headaches. She is showing teenagers how to swallow pills. Thanks to some new Nike shoes from Baba, she gets up in the morning, and does a dance workout.
Hillary also started Grade 1 this week with M.F. McHugh Education Centre. Her daily in-room lessons from her teacher, Reg, are….moving, to say the least. I weep in secret each morning as Hillary packs her backpack and waits by the door for Reg. We even get visits from fellow fighter Nancy Kawaja, an educator with McHugh who is overcoming health challenges of her own. I’ve never seen education delivered this way — with pure patience, understanding, compassion, and joy… all from a hospital bed. How fortunate are we.
We would not have made it this far without my parents…Hillary’s Nana and Baba.
They’ve given up everything. They cook healthy food all day for both myself and Hillary (whatever she craves), do all of our laundry, buy us whatever we need (toys, games, supplies), provide relief for showers, take Alyssa for sleepovers … sometimes they just sit in the parking lot and wait. They are here every single day, and on call all night long. They are truly selfless, and we will forever be grateful. If you see them out and about in Orleans, know that whatever they are doing, they are doing it for Hillary. Give them a pat on the back.
I’m able to write this because I do envision a successful outcome with this treatment. One that offers complete life-long remission. We can be part of that 70% that does not have to proceed to transplant. I have a band of mothers at my fingertips stepping me through every single moment.
Erica in Saskatchewan has been through it with her son. It didn’t work, and they went to transplant for full remission. Their only match was a 60 year old woman from Germany.
Lori in Toronto did it, fought it, and had to settle for an unmatched donor for lack of an available one in the database. She is caucasian, like us. They are doing great.
Amanda in Nova Scotia is currently in it with her daughter, two months ahead of us, waiting for the immunosuppressive therapy to work. I get hourly updates.
What will our story be?
Well, I can tell you it won’t involve us not finding a stem cell match if we need one. Not on my watch. It was very difficult to miss the stem cell drive at my former high school, St. Matthew High School on August 29, facilitated by the Bruce Denniston Bone Marrow Society.
Natalie (Dixon) Spence, you went way above and beyond to support my family by organizing all aspects of the event. Not sure what we did to deserve you. Thank you. Kalum Figura, for repeatedly mobilizing the air waves to promote these stem cell drives…you play a large role in educating the public on this issue which is heavily misunderstood.
Amy Volume from KISS FM — we’re not sure what motivates you to go to the ends of the earth for Hillary, by getting Gabriel’s Pizza to donate pizza in exchange for a cheek swab…but thank you. Please keep loving her.
Nicole…thanks for shaking hands for me at the drive event, for reading Hillary books at bedtime via Google Hangout, and for bringing me chocolate. Susan, thanks for rushing to my side with your mom on our toughest day, for lighting prayer candles for Hills, and for bringing me chocolate. Victoria, thanks for bringing me chocolate, and a sweatshirt to hide it.
Corey, Hillary loves her necklace wears it every day. Glenna — just seeing your name on a card moved me. Molly Penny, your daily visits mean so much, and you never deflect from the core function of your role here at CHEO. These are only a few of the people who require our gratitude. But this is all I can offer right now from this room.
Life here is surreal. I’m pretty sure I have already died. Sorry.
I plug my daughter into a wall every night to sleep. I watch as they pull vials of blood from her bruised and pale arm every day while transfusing her with someone’s else’s blood into her other arm at the same time. I wear gloves to feed her medicine that would harm me if I got it on my skin. I no longer sleep in a cot on the floor. I sleep holding Hillary in her hospital bed.
It’s been dark. But, the light is beginning to shine through. And it’s brighter because we’ve witnessed true darkness with our heads held high.
It shines through our commitment to promoting Canadian Blood Services. It shines through the continued stem cells drives planned in Hillary’s honour, like the one coming up at Ottawa University on October 3. It shines through Twitter — where hundreds of people mobilized to help find single donor platelets for Hillary. It shines through the Grade 12 student who got swabbed for Hillary, and has already been contacted to be a potential match for someone in need. He said he will follow through.
It shines through Hillary.
She will forget. I will be re-born. We will heal.
Thank you for the thoughts and prayers that have encircled Hillary over the last several days. I can physically feel your angst as you await an update on her status.
The first six days of Hillary’s immunosuppressive therapy were not without incident, but they were pretty manageable in terms of what could potentially happen with this treatment — some hives, sore ankles, and mood changes. We were able to make crafts and read while lying in bed for her six hour daily infusions. She was a little disappointed when she swallowed a loose tooth, but she and Molly Penny figured it out with research and letters to the tooth Fairy. She was happy. Her doctors were very pleased. She was rockin’ it, as evidenced by her tweets.
But on Day 6 (Sunday), late in the evening, Hillary experienced a severe reaction. It was like a light switch went off, and Hillary felt as though her brain was melting. The long and extremely violent event (exacerbated by the steroids) sparked a spot call (emergency) in the hospital to bring experts to her aid as they tried to alleviate her symptoms. We called family to her bedside. It was unspeakably terrifying.
Thanks to the fast-actions of nurse Judy (whose paisley scrubs and kind eyes are forever ingrained in my memory), Hillary received several doses of morphine, lorazepam, some blood pressure medication, and a life-saving platelet transfusion. Words cannot express the relief felt when you hear that blood is available in your child’s blood type from the blood bank, ready to use. It gets me every time.
Hillary continued to be sedated throughout the night to manage her pain, and had a second headache episode in the morning. We were hoping the incident was isolated, but it continued and increased in frequency through Day 7…Day 8…Day 9….tomorrow is Day 10.
An ultrasound revealed healthy kidneys, liver, and spleen, but blood levels revealed elevated levels of cyclosporine. Her medications have been adjusted, and we will stay at CHEO until she is stable enough to return home. Hillary has been on 12 different medications, some have to be administered with gloves due to their toxicity. Balancing the doses of these mediations is like….an artistic science. Too little, and the therapy won’t work. Too strong, and her organs can be damaged. But one thing is clear — if we don’t treat, Hillary can’t live.
And so we push on, for her, and her sweet sister Alyssa.
Once discharged, we will return to CHEO three times a week for blood work and frequent transfusions. Hillary will need both hemoglobin and platelet transfusions on Friday. She may develop serum sickness. She could develop an infection. Emotions are high. Fear is real. Communication is hard. But Hillary is amazing, and everyone who comes into contact with her agrees. I can’t even begin to describe how strong she is.
Hillary not singing right now, but she’s humming. And, she’s not the only child suffering in this hospital. I’m not the only mother sitting on an arm chair alone in the dark, afraid to sleep, eat, move.
Our story is not unique.
Please become a blood donor.
Please join the Canadian stem cell registry.
Please think bigger.
The fast track to treatment has been fast indeed, and tomorrow, Monday at 7:00 am, Hillary will be admitted to CHEO for the start of her immunosuppressive therapy treatment.
It will be an intense 8-10 days in isolation (with only mommy and a nurse) to bring down her immune system with hATG — to essentially stop her T-cells from attacking themselves. The more challenging part will be when we are sent home to administer the cyclopsprine medication ourselves for three months, without the CHEO army at our bedside.
Our doctor tells us this will be her most vulnerable time yet. She will have low neutrophils for the first month, which means she will have no chance of fighting off infection. Her lungs will be highly vulnerable. She will grow hair. A lot of it. She can’t be in the sun. She will gain weight. She will need frequent blood transfusions. She will not attend school for at least six months, and visitors will need to be carefully screened.
Our doctor told us this is also the most difficult part for families and relationships — not everyone understands the explicit nature of isolation. But this can work. It has to.
Acquired (not inherited) and idiopathic (meaning unknown).
Last week’s visit with SickKids Hospital in Toronto lent more insight into Hillary’s disease being auto-immune rather than genetic. Since all tests have come back negative for any underlying genetic cause (or stem cell defect), and since Hillary also developed an extremely rare PNH clone, her aplastic anemia is likely acquired.
Still idiopathic, meaning we will never know why, but acquired in that a virus or event likely happened along the way that made her body put up some defences and began attacking itself instead of the invader. This means this treatment path might work and bring with it life-long remission. We have hope.
While in Toronto, we met up with an aplastic anemia survivor. Naomi, we could not believe you were real. Naomi reached out to us very early in Hillary’s diagnosis by text. She is a 25 year old transplant recipient now in recovery. We have bonded for life. She gave us so much hope. We also met with a friend from high school.
Thank you, Colleen, for meeting us for cookies and a hug. Isolation can be pretty lonely. You made the world of difference with your friendship and laughter.
Meeting with Colleen made me realize….twenty years can’t interrupt the sense of community and belonging that the OCSB’s St. Matthew Catholic High School has afforded.
Like Natalie. Nat showed up at the last drive event, then went a step further and organized another bone marrow drive at our former high school in Hillary’s name. Join us on Thursday, August 29 from 3-6 pm at St. Matt’s in Orleans where the Bruce Denniston Bone Marrow Society and Canadian Blood Services will have 500 kits on hand. It takes 10 minutes to join the global registry.
#StartWithHillary and do it for Jeremy, who’s having a hard time finding a stem cell match since he is half-Chinese. Read more about #Match4Jeremy here, and please help give his family a chance at keeping their Daddy. More donor drive events have been confirmed for Caribbean Culture Days on September 28 and Ottawa University on October 3. A great deal of sharing is going on within Twitter, and Hillary will keep tweeting her savage tweets @StartWithHills to increase awareness on this critical issue. And if you have any doubts, read more here: Elmoazzen: Stem cell and cord blood donations can save countless lives (August 2, 2019).
Back to Ottawa and a sobering reality.
After our visit to Toronto, we rushed Hillary back home for two life-saving transfusions — hemoglobin and platelets. Then, the following day, dental surgery to pull two molars — a common procedure in order to prevent any possibility of infection. Then, some awful-tasting medicine and recovery.
Summer has always been a joyous time for us, filled with camping, boat-rides, food, and family. The days have been tougher this year. But, one thing about Hillary — she’s a winner.
She is to be highly credited for her current state of health — it’s quite rare to have remained infection free up until this point. Her precocious nature is a gift that has helped her make mature decisions about her health. She does not mind wearing a mask, and is now practicing swallowing mini Sweet Tarts in preparation for taking pills.
We work at getting through each day, and that’s it. Tomorrow is not promised — but it is planned. Please dream thoughts of wellness for Hillary as she works so very hard this coming week to beat this rare blood disorder, and come out the other side, singing.
Yesterday was Alyssa’s 9th birthday and another bittersweet day for the family. After a morning visit with CHEO, we were told Hillary is back in the “severe” range for aplastic anemia, particularly due to her low neutrophil levels. This puts us on the fast track to treatment. The risk of a deadly infection from germs, bacteria, and fungi are far too great to chance it. No more watching and waiting. It’s time to act.
This comes after a very eventful long holiday weekend, including an ambulance ride for a bonked and bloody nose. Thank you 911 Emergency Services, Ottawa Police Services, and Ottawa Paramedics Sam and Sebastien for your fast response, your calm competence, and your compassion for three, very scared girls. Alyssa’s coolness under pressure will never be forgotten. Hillary still thinks that she experienced “true magic” when she floated out of the back of the ambulance as the legs of the stretcher unfolded out of her field of vision. After some blood tests and a CT scan to check for a cranial haemorrhage, we were cleared to go home.
Our donation experience was moving.
On holiday Monday, we gave back in the best way possible by donating blood at the main office of Canadian Blood Services — Mommy’s 12th and Daddy’s first time ever. We saw several men donating platelets, which are interestingly yellow in colour. We watched as they sat for an hour and a half to filter the platelets from their plasma — a painless experience done as often as every two weeks. Women who have had children cannot donate platelets, and so these men…well, they are also life-givers, aren’t they. One of the men was making his 500th donation. Another, serendipitously, happened to be volunteer Stephane Goyer, who helped run our first bone marrow drive. And our phlebotomist, Christine, shared a story of love and loss with us. Hillary will need platelets this week. She warmly thanked several donors in person. It was a truly moving experience to say the least — not to mention, easy and fulfilling.
This is what the fast track includes.
Everything has been expedited. We’re off to Toronto on Sunday to visit with SickKids. When we get back, we head right into dental surgery, and will likely be admitted the following Monday to begin treatment, depending on how well she does.
If Hillary had access to a matched sibling donor, we would be going directly to a bone marrow transplant. Since we don’t, immunosuppressive therapy is considered the safer, less invasive, first-line treatment. The treatment begins with intensive administration of hATG medication for eight days in hospital followed by three months of daily cyclosporine medication at home, in strict isolation. It will not be easy. There are complications and visible side-effects. If it works, we continue for a year, maybe longer. It offers a 75% chance for remission. You can try the therapy first then go to transplant, but you can’t try it the other way around. We have hope that it will work.
The gift of life must be under that Christmas tree.
If it doesn’t work after three months (around Christmas-time) then we will go to transplant. We are hopeful there will be a 10/10 unrelated donor match waiting for her in the global registry. But hope alone is just not enough for me as a mother. Not when there is something I can actually do about it. I am in contact with too many people who were told there was a match, only to have it fall through. I cannot take that chance. I will not. I would want someone to fight for me. All it takes is to raise awareness. That’s it. The rest is up to you.
Even if Hillary doesn’t need a transplant now, she may need it in a year, in five years, in ten years. And what about the other 800 people in Canada waiting for a match? The other 18,000 around the world? More than half of the people waiting will not find one. Like this 9-year-old who is desperately searching for a stem cell match for aplastic anemia, just like Hills. It takes 10 minutes to #GetSwabbed to see if you can save a life. There are several upcoming opportunities in Ottawa to join the stem cell registry. Stay tuned for more information, and look for Hillary in Maclean’s magazine in September. She’s being featured as part of a national campaign by MediaPlanet for her efforts in raising awareness on this critical issue.
Unbelievably, the hardest is yet to come.
We’re told it’s a marathon, not a race. And while it’s being done in isolation, it’s not being done alone. Thank you to my parents for being there for every single appointment and procedure since day one, no matter how difficult or inconvenient it may be. Thank you to Anna for providing the only respite us three girls had this summer while Steve was at school. Driving to the east end of the city and swimming in your ozone pool every day with no one around was pretty much the best gift Hillary could have been given, especially because it came with your complete understanding. Thank you to the OCSB for letting me feel useful at work, for the very little I can do right now. You truly walk the walk when it comes to how to #BeWell, #BeCommunity, and #BeInnovative in the workplace. Thank you everyone who came out to celebrate Alyssa’s birthday on such short notice. She really deserved a stress-free day. She said it was “the best birthday ever” so that’s a win.
Thank you Nicole for rushing stuffed animals to the emergency room in the middle of the night. Thank you Stephanie for mobilizing an entire army of lacrosse players to spread awareness. Thank you Uncle Billy for installing a hot water tap outside for Hills to swim safely. Thank you Nadine for understanding. Thank you Dani and Kristi for rescuing me over and over. Thank you Mme. Brownlee for being Alyssa’s favourite birthday guest. And, if any of you fellow golfers out there really want to help us thank the Bruce Denniston Bone Marrow Society for saying yes to every bone marrow drive, please register for their upcoming September 20 golf tournament, their only fundraiser of the year. Click here: http://www.dennistonsocietyottawa.org/rcmp-denniston-bone-marrow-golf-classic-2019/
And Hillary. How is Hillary doing?
She is absolutely amazing. She is happy and has no problem making good choices, which is why she is doing so remarkably well. She’s very smart. She craves power-walking along the canal and loves playing her piano. She is not in pain and does not feel cheated. She’s fighting. She sees the big picture. And she never, ever stops singing.
This is the scariest place we’ve ever been. Please continue to send your light and love in Hillary’s direction.
“The little reed, bending to the force of the wind, stood up again when the storm had passed.”
“A rare presentation of a rare disease” is how the senior transplant specialist categorized Hillary’s condition during our visit to Chu Sainte-Justine in Montréal last week. In all of their years treating patients with aplastic anemia, they’ve never come across a patient quite like Hillary. That’s her in the photo (right) in the awe-inspiring Sainte-Justine hospital atrium.
Hillary continues in the watch and wait phase. She is floating in the “grade 2 non-severe” category right now, but can dip into life-threatening “severe” at any moment. She might need to go to transplant as an emergency, she could coast at the moderate stage for years on immunosuppressive therapy drugs, or she could still snap out of it with a spontaneous recovery.
After taking Hillary’s rare presentation into consideration, Montréal suggested a more conservative alternative before going to transplant, and CHEO concurs. It has a chance of working, but they’ve never tried it. After another 1-2 transfusions, instead of treating Hillary with hATG and cyclosporine, we are going to try the less invasive cyclosporine alone, without the hATG. If it doesn’t work after three months, we will go to transplant.
Does Hillary have a stem cell match?
We have been told that she does have a common HLA type, so that is promising. But, securing her transplant match can only be done when she needs it, as an emergency measure. Understandably so. They can’t secure a match now when someone in a more dire situation may need that match sooner. Makes perfect sense. Guess they can’t keep it in a cooler on ice for us.
This means that even if there is a match in the global registry for her right now, there might not be one in three months when we need it. What’s more concerning is that even if a match is found, getting in touch with that donor, having them pass their screening test, and making sure they follow through also has to happen. This takes weeks. We know someone right now who only has one match available in the entire world to survive, but the donor’s phone number is out of service. That’s right folks.
This is why we can’t stop.
Donor clinics continue to be held all over the country in Hillary’s honour this summer. We are planning another large drive event in Orléans at the end of August (date and location to be determined).
Until then, our calendar is full. Hillary needs to have two teeth pulled, to prevent a potential, dangerous infection. Alyssa and Mommy are taking a tour of the cord blood facility at Canadian Blood Services to learn more about that process (even though sweet Hills requires a bone marrow transplant). We are headed to SicKids in Toronto in the end of August to meet the foremost aplastic anemia specialist in the country — the only doctor conducting expansive research on this disease.
That’s why we have to #StartWithHillary and never stop. Alyssa said it best last night before drifting off to sleep. She said it’s like playing the impossible level of a video game.
I asked her how we should beat the level. I said fight. She said pray. We’ll try both.
It’s been several weeks since our last official update, and so much has happened. Thank you for patiently waiting and understanding how difficult it has been. We’re actually not quite sure how we are functioning as a family, but we wake up each morning and start again.
Our appointment with the Hospital for SickKids on Hillary’s birthday was difficult. Their transplant team went over the various treatment options, risks, and possible outcomes. We also received some news that Hillary had developed a peculiar Paroxysmal Nocturnal Hemoglobinuria (PNH) clone, which now makes her condition even more rare. It’s not “classical” PNH, but a clone. As her PNH clone changes (in either direction) — and her Aplastic Anemia fluctuates between severe and moderate — different treatment options come into play. Her condition remains idiopathic (meaning for an unknown reason) with different signs leading both towards and against it as a immune-related response. More tests are out all over the world. Our doctor said it best — we are in no man’s land. We now know it’s okay to be emotional, unbalanced, and exhausted.
The experts at CHEO and SickKids have been incredible, and they fully support our decision to welcome another opinion from the transplant centre at Chu Sainte-Justine Hospital in Montréal, Québec. They want to see Hillary. And so, we are off to Montréal this week to help us make the most educated, informed decision we can regarding the survival of our daughter.
Here are our possibilities as they exist at this moment.
Watch and wait. This is where we have been for the last two months. This means frequent blood tests to check her hemoglobin, platelets, and neutrophils, and giving her blood transfusions when needed. Hillary remains neutropenic, meaning she can’t fight off infection, so we are staying at home in isolation. It’s tough. But if anyone gets it, Hillary does. She’s not sad. Short term pain for long term gain. We can handle that, if it means we get to keep her. But, each blood transfusion adds new antibodies to her system which can change her chance of success for a bone marrow transplant, and transfusions over the long term can cause organ damage. So, we watch and wait, but are planning for imminent treatment.
Immunosuppressive therapy. This treatment involves bringing down her immune system with anti-thymocyte globulin (ATG) for five days in hospital, and then trying to kick start her bone marrow with strong drugs for a year at home (cyclosporine). But, it only works half of the time, and many go on to a bone marrow transplant anyways. While it is less risky than a transplant, she can still develop a deadly infection during treatment. And, the disease may come back later in life, in a more serious form. Calculating the odds.
Going to transplant. If we had access to a 10/10 sibling stem cell match, we would have gone immediately to transplant. If Hillary dips into the “very severe” category, we go right to transplant. Hence, the desperate quest to find a 10/10 unrelated donor match. But, the dangers of proceeding with a bone marrow transplant are serious and life-threatening, particularly with an unrelated donor. First, is finding that perfect match. While we still remain confident that her match is out there due to her common HLA type, and that a potential match will follow through when called upon to donate (God, please), it remains unconfirmed at the moment. A transplant will mean relocating to either Toronto or Montreal for at least 100 days. Praying for her survival will be the most time-consuming part.
Clinical trials. Half-match (haploid) transplant. Immunosuppressive therapy variations. And of course, there is still the chance of a miracle….a full unexplained recovery. Still.
We will continue to encourage the world over to join the global stem cell registry to increase Hillary’s chances of having a match available when she needs it. We are in contact with so many families who have found their “one” match in the world, so many people waiting for it to happen, and so many whose children have died waiting. We simply can not fall in the latter category, and we will forever advocate for everyone to have an equal chance at survival. In the words of Hillary’s favourite Princess Jasmine in the new Aladdin, we will not go speechless.
We have always been very cautious parents when it comes to caring for our children. Making this decision will be the single hardest thing we ever do. Your compassion and support is all that is needed. The rest has no meaning.
Hillary received a welcome hemoglobin transfusion today to give her some energy for the weekend. It turned her cheeks a rosy pink which we have missed seeing. This is her in the parking lot at CHEO right after her transfusion, feeling great.
During some fun in the backyard at home, Hillary took a tumble walking up the stairs and it was back to the emergency room for the McKibbin family. Hills was examined for a leg bruise and sent home relatively quickly after some late night ice cream. It was a long day but everyone was happy, so we didn’t count the hours.
Thank you to the anonymous donor from Canadian Blood Services who helped keep Hillary singing today. Hillary thinks that each pack of blood should have an avatar/emoji on it showing the type of person who donated, and we think that’s a great idea.
Please know that Hillary is happy, active, funny, and feels very loved and secure. Oh, and for those who know her best, she has not stopped singing.
#GetSwabbed in #Ottawa for @CanadasLifeline RELOADED. Please come back to St Francis Xavier High School on July 4 from 3-6 pm to join the global stem cell registry. There will be more staff and 1,200 kits available. #StartWithHillary and remember why.
Well, Ottawa. You did it again. After an unprecedented 630 of you joined the global registry on June 24, another 251 of you showed up to our second bone marrow drive. Another 600 of residents in the Ottawa region applied online for a swabbing kit since the beginning of our campaign on June 17, as evidenced by metrics provided by Canadian Blood Services. Almost 1,500 in this city alone. That is simply incredible.
We have so many people to thank.
Thank you to Steve from the Bruce Denniston Bone Marrow Society and his volunteers who have given countless hours to this campaign, with competence and sincerity. To Paul, the RCMP Mountie who stood beside us as we shook every hand. To the group of PetroCanada employees who came in after work to get swabbed together. To Moncion’s Your Independent Grocer for providing cookies, crackers, and water for both events. To Gabriel’s Pizza in Riverside South for attaching our drive poster to every pizza delivery box. To Sheldon of Best Green Hedges for filling in the ditch Hillary dug on Mother’s Day…you made it into a garden instead of a graveyard, and we will keep it healthy forever. To the Ottawa Catholic School Board for lending their school facility, setting up each event, sharing our call through your vast online network, and most of all, keeping our family in your prayers… we are forever grateful, but not surprised.
To Tom for making it happen, to Kristi for taking care of sweet Alyssa, to Kalum for no holds barred, to Nicole for being everywhere, to Anna & Vicky for getting me through, to Tommy for making Hills’ video, to Amy for speaking volumes… to Greg, Doug, Stu, Carla, Jon, Victoria, Patricia, Dani, Mary, Susan, the Ostapyks, Thomas, Kay, Erica, Molly Penny…to Mayor Jim Watson, to CHEO President Alex Munter, to Dr. Leibman, to both of our workplaces (the OCSB & OCDSB), to our family who was there for us, who understood our pain, to Nana and Baba for taking care of Hillary, just the way we needed it…
Please God, get us through this, so we can spend the rest of our lives thanking those who have helped us. Thank you, Ottawa. Thank you.
This morning, we met with the transplant team at Sick Kids Hospital in Toronto via telemedicine. It has really sunk in, now. So many of you messaged birthday wishes to Hillary. So many have sent personal messages of hope. So many have asked for an update, and we have so many people to thank. But, today was simply the hardest day of our entire lives thus far… juxtaposed with the pure joy and happiness of our now six-year-old child. It’s been very hard keeping her bright light contained while we try to keep her safe and infection free, but we are going to continue to fight for Hillary’s safety.
Please give us some time to provide an update. We need to spend time together as a family. We need to rest for a minute. We need to regroup.
Once we’re ready, we will come back fighting — stronger and more unified than ever. We will be ready for the second July 4 stem cell registry event, and the one after that. We vowed to leave no stone unturned for our daughter, and that’s exactly what we’re doing. There is no feeling like it in the world. Steve and I will be there on Thursday to thank everyone personally for such selflessness.
Thank you for your patience, support, and understanding. Please continue to have hope in your hearts for Hillary as she battles this bizarre medical mystery. Positivity is the most important gift we can give her… and her sweet sister, Alyssa.
Wow Ottawa, you smashed it last night. You turned up in droves to join the global stem cell registry. After an unprecedented 630 registrants, we ran out of kits, and had to turn another 500 away.
To the mom and her son from Montreal who was turned away, please message us. We will drive a kit out to you personally. To the family and friends who sat at the back, feverishly assembling more kits for Canadian Blood Services, thank you. To the handful of people that came to join, but fell outside the 17-35 demographic, thank you for coming. Please continue to support this cause, and keep donating blood. To the friends and family that we have not seen in decades who came for just a hug…you’ve moved us with your kindness and love.
To the young men and women of all backgrounds who came out, shook our hands, and said “no problem” … you really demonstrated that you got it. You heard the call, understood this complex issue, knew how easy it was, and did what you could. You just needed a reason. We are organizing another event within the week. If you were willing to come out last night, please be willing to come back for another try.
We’re sorry we ran out of kits, but we’re not sorry you heard Hillary. She knew if she spoke loud enough, you’d hear her. This is Hills, and big sis, sweet Alyssa, on their way to CHEO yesterday morning at 7:00 am, before the successful drive event. You might want to turn down your volume.
Please join us on Monday, June 24, 2019 at St. Francis Xavier High School, 3740 Spratt Road from 3:00 to 7:00 pm to join the bone marrow registry in person. It takes ten minutes to see if you can save a life. Young, male donors ages 17-35 offer the best patient outcomes, but females can donate, too. Please print the poster… post it, pin it, share it.
Please shake our hands, every single one of you. The impact you are having on generations of thinkers by joining the registry — or simply sharing and spreading awareness — is truly profound. Be fiercely proud.
We sent out a cry for help, and you heard it. That’s what makes us human… alive. Our DNA is not ours alone. It belongs to the evolution of mankind. There is still so much work to do here, particularly for the underrepresented. We will #StartWithHillary and never, ever stop.
This is Hillary. She is six. She has big dreams of being a rockstar. She is always singing. On May 12, 2019 (Mother’s Day), after a blood test, we were called in the middle of the night to bring her to the nearest emergency room immediately.
Hillary underwent two urgent life-saving blood transfusions. She was admitted to the Children’s Hospital of Eastern Ontario (CHEO) and further tests ensued. A chest x-ray and surgical bone marrow biopsy revealed that she did not have cancer. Samples of her blood were sent out all over the world — London, New Zealand, Vancouver, and California. We found ourselves tumbling down the rabbit hole as doctors systematically ruled out over twenty genetic causes and viruses in a race against time to determine the best treatment.
Hillary is sick.
She has been diagnosed with an extremely rare and fatal disease if left untreated, Idiopathic Aplastic Anemia. Affecting approximately one per million people a year, this disease causes Hillary’s bone marrow to stop producing enough red cells, white cells, and platelets. She continues to receive blood transfusions to keep her alive. We knew Hillary was one in a million; we just didn’t know it would be in more ways than one.
Her low red cell count means she is pale and constantly exhausted. Her low white cell count means she is highly prone to infection. Her low platelets have resulted in full-body bruising and uncontrolled bleeding. She cannot attend school and requires constant care. Time has stopped for all of us. All we can do is watch and wait.
Hillary needs a life-saving bone marrow transplant.
Her big sister, Alyssa (8 years old) was immediately tested as a potential donor. She is only a partial match. Hillary requires a 10/10 match. This has been extremely difficult for Alyssa in so many unfair ways.
A transplant from an unrelated donor provides an estimated 85% chance of survival from this disease. If we are lucky enough to find a match, we will then need to relocate to a hospital with a transplant centre (Toronto or Montreal). We must then pray that her body does not reject the transplant, and make sure she remains infection free. Hillary’s recovery will be critical. She has a long journey ahead of her towards a healthy life.
We’ve organized numerous blood donor clinics in the city of Ottawa on behalf of Canadian Blood Services — only to now be in desperate need of blood. Our daughters have donated their hair twice to the Canadian Cancer Society — only to have to watch Hillary lose all of her hair for her upcoming treatment. We’ve given our hearts and time to causes like United Way Ottawa as a recognized Community Builder to help those in need — only to now be a position of need ourselves.
Not everyone will find a match.
This call for help is not just for Hillary. It’s for every human whose life can be saved by the selflessness of another. As you’re reading this, there are 18,000 people around the world waiting for a match — 800 in Canada alone.
Wherever you are in the world, join us in our quest to increase the World Marrow Donor Association registry. Hear this call for a cause bigger than yourself. Willingly offer something that replenishes within yourself effortlessly, and let young children like Hillary grow old, sing…shine.
Reality has been blurred with nightmare. We just can’t take a passive stance. We have to fight. We will leave no stone unturned. Your participation is appreciated beyond measure, as are your prayers for our sweet, sweet Hillary. God help us.