3rd Re-Birthday/Hero Day - A Love Letter to Sick Kids and CHEO

[Photo Description: A split image. On the left is a photo of mom Dawn with eyes closed while lying with Ollie, cradling him from behind as he slept in his hospital bed at Sick Kids Hospital in the Oncology ward in April 2020. It had just been confirmed that Ollie had relapsed in his central nervous system a second time while readying to go to transplant. On the right side, in April 2023 Ollie stands on the stairs at home in Ottawa with one arm in the banister and the other around Dawn who has her arms around him. Both are smiling and healthy.]

There are many kinds of love. The first love one has for one's parents or whoever nurtured you from birth. Some are lucky enough to have the love of siblings. Others simply the love of extended family. Love for friends, especially those who share your history and/or hard times. Romantic love for your partner made even bigger if you become parents together. Love for your children, whether born to you or gifted another way. 

But over the past 1337 days since my child was diagnosed with a critical illness that left me contemplating a possible life without him and ultimately getting to keep him, I have come to understand that there is also a special love that you have for the medical team that saves your child.

[Photo Description: Ollie sleeping after receiving the Benadryl before his stem cell transplant, while a Sick Kids nurse in PPE prepares to start the transfusion of Abby's stem cells.]

And so I am writing this love letter to my son's medical teams at Sick Kids Hospital and CHEO on this, Ollie's third re-birthday and our daughter Abby's 3rd Hero Day. Three years ago when then 8 year old Ollie (who had gone blind during his first of two relapses of his Anaplastic Large Cell Lymphoma ALK+) finally got his sister's half match stem cells at Sick Kids Hospital after a very intense and bumpy cancer journey, we breathed a sigh of relief, but knew that the hard work of recovery and survival was just beginning and there were no guarantees that it would work. 

[Photo Description: a split screen image of a video chat that we had with Abby while the transplant was started. Given out was early pandemic she was not allowed to be there in person even though she was the donor, so this is how we made her part of the momentous occasion. The top image shows Abby smiling as we show her the bottom image, which is the bag of her incredible stem cells hung with other bags of fluid and medication to be administered.]

To recap, it was just months after the COVID-19 pandemic had started. We'd arrived at Sick Kids from CHEO the first time for stem cell transplant in the second week of the very first lockdown after 6 intense months of cancer and relapse treatment at CHEO. Because of the pandemic, planes were being grounded, so his then 11 year old sister suddenly became his donor. Her cells were harvested at Sick Kids on March 31, 2020 and just 8 days later he relapsed in his central nervous system a second time. Unfortunately this was the week before he was supposed to start his total body radiation. We stayed in Toronto for 5 weeks after this to try a cancer inhibitor drug to no avail. 

[Photo Description: Abby watches as her stem cells collect in a bag hung on the Apheresis machine in the Dialysis Unit at Sick Kids Hospital on March 31st, 2020. The lines running her blood through the machine to strip out her stem cells can be seen beside her.]

After consulting with our CHEO Oncology team we opted to go back to Ottawa to try brain and spine radiation (thank you to the Ottawa Cancer Centre Radiology team at the Ottawa Hospital) combined with a brand new TKI obtained under compassionate grounds.  

[Photo Description: Members of the radiation team at The Ottawa Hospital put Ollie's radiation mask on him while he lies on the table. The team had his mask decorated with the cartoon character Johnny Test, which was his favourite. This radiation mask now hangs proudly like a trophy head in his epic playroom.]

To our delight and to the shock of his transplant team, this back pocket plan (designed by his CHEO team after his first CNS relapse) worked! By the end of June 2020 he was back in remission and 6 days later we were back at Sick Kids to ready for a second attempt at a transplant. 

Total Body Irradiation (TBI) at Princess Margaret was intense, but went well and we are grateful to the team there for their patience and help. 

To our shock, transplant went very smooth (a far cry from our very bumpy cancer treatments before) despite the added stress and fear of doing it during the first months of pandemic. Chimerism (which measures the number of donor cells present in the recipient) was 100% from the first test and has remained so the entire three years since. Our cheeky daughter promised us her cells would be overachievers and they certainly were!

[Photo Description: Abby, Mario, and Dawn surround Ollie in his wheelchair in the Atrium near the elevators on the 8th Floor at Sick Kids on discharge day +38. All are wearing masks and looking jubilant.]

Ollie was so well that after being discharged on +38 after transplant, we only stayed nearby until +58 and then were sent back home to have CHEO do the post transplant care since. We are about to have our final of three years of regular bloodwork and checkups post transplant at CHEO in August and I am actually weepy at the thought that we'll only see our oncology team once a year after this, despite how grateful I am to be at this point.

He's now fully re-vaccinated, breezed through COVID-19 just two weeks after his third vaccine for it in March 2022, has been unbelievably well, stopped his Lorlatinib TKI a year ago this week, lost 26 pounds of the weight gain from the TKI, is mentally well thanks in large part to CHEO Oncology's Psychologist and Social Worker, and remains in remission as confirmed by scans last month. 

Even better, he's living his best life, continuing to take skateboarding lessons, earning his orange belt in karate this year through Kids Kicking Cancer Canada, playing with the Canadian Blind Hockey Association last winter, Beep Kickball in the spring and summer, and representing his elementary school (grade 5) on their floor hockey and track and field teams. 

[Photo Description: Ollie poses for a photo during hockey practice with the Canadian Blind Hockey Association/Ottawa 67s Blind Hockey team in February 2023.]

He also does an amazing job advocating for better childhood cancer and blindness care and awareness whenever he's asked. He was featured (skateboarding blind) in a national Canadian Cancer Society Palliative Care campaign in January and spoke to Parliamentarians on behalf of children with cancer at their Day on the Hill in April. He and his CNIB Buddy Dog Hope will also be featured in an episode of AMI-TV's Blind Trust: A Guide Dog's Journey on August 22, 2023.

He will also be speaking on behalf of Young SIOP and I on behalf of Childhood Cancer International in the session on patient-centred care at the upcoming SIOP Congress in Ottawa this October. So if you're there, come by and say hi! I am also thrilled to contribute to several childhood cancer advocacy activities, many within CHEO and perhaps most notably with the new Canadian Pediatric Cancer Consortium (CPCC) as one of the Persons With Lived Experience Co-Leads for the Education and Training Matrix. We never take for granted how very lucky we are to be here today and do our best to give back where we can.

[Photo Description: Ollie and Dawn pose in front of the Canadian Cancer Society backdrop on their Day on the Hill. Ollie looks very handsome in a white dress shirt with bow tie and black dress pants and holds his mobility cane and Mom's arm.]

This love letter is for each and every single person in hospital who helped my son to survive. No contribution was too small and we are grateful for all of them including, but not limited to (in completely random order):

- The ENT clinic at CHEO who helped us to get to the bottom of the bump on his neck and get to diagnosis in 28 days after trying to figure out with our pediatrician for 4 months what it really was;

- Our incredible team of Oncologists and transplant doctors, lead by Dr. Abbott, Dr. Alexander and Dr. Ali;

- The people who cleaned his rooms and kept them bacteria free (especially when he had no immune system after transplant and during the pandemic); 

- Health care aids who transported him safely to so many operating rooms, scans and tests, all while keeping him and mom calm and often while telling us great stories that distracted us during stressful times;

[Photo Description: The 4 North Oncology Team and fellow patients at CHEO cheer and celebrate as Ollie rings the last planned admission gong (after his first central nervous system relapse during front line treatment) with Mom and Dad supporting him as he stands without his wheelchair to do so.]

- The incredible nursing staff in the MDU (especially our nurse case manager, post bone marrow transplant nurse, POGO Interlink nurse, and Nurse Practitioner), 4 North, Surgical Day Unit and PICU at CHEO and the Sears Clinic and 8th Floor, especially BMT Unit at Sick Kids; 

[Photo Description: Nursing staff in the Sick Kids BMT Unit give Ollie a send off with cheers, music and pom poms while daddy pushes him in the wheelchair on +38 discharge day in August 2020.]

- Lab technicians, pathologists and researchers who did the many tests to arrive at a rare diagnosis, identify infections, and to help us monitor too many risks to count over the past three and a half years;

- Imaging technicians and radiologists, often who dealt with our urgencies and were called in the middle of the night to do scans when he was relapsing or had to deal with our intense "scanxiety";

[Photo Description: Ollie sits with his leg in a bone density scanner at CHEO while a technician sits at the computer beside him.]

- The CHEO Genetics team and those at PROFYLE for helping us to identify his specific mutation that lead to a targeted therapy that was obtained under compassionate grounds, and got him back into remission and on to transplant after his second relapse when it looked doubtful that anything would;

- Pharmacists who helped us to find the right cocktail for every situation, creative ways to get adult meds down his hesitant throat, and ensured that despite it all happening during a global pandemic across two cities, we never had to worry that the lifesaving drugs wouldn't be available to us;

- Palliative care at both hospitals and the PICU team at CHEO who taught us that they do so much more than pain management and calling them in does not mean end of life;

[Photo Description: Ollie sits in his wheelchair at CHEO while recovering from his first relapse and is surrounded by therapeutic clowns, who were causing mischief and giving out lollipops.]

- Psycho-social teams including child life specialists, social workers, psychologists, psychiatrists, therapeutic clowns, music therapists, art therapists, volunteers, etc. You brought fun and compassion to a very scary situation for us on a daily basis and I am certain we could not have walked away with any good memories of this period without you;

[Photo Description: Ollie strums a ukulele in his hospital bed while a Music Therapist at Sick Kids plays the xylophone in an isolation room while waiting to engraft during transplant.]

- The radiation teams at the Ottawa Hospital and Princess Margaret Hospital who worked together flawlessly to calibrate both brain and spine radiation and total body radiation within mere weeks of each other and made something so very scary almost easy for us;

[Photo Description: Princess Margaret Hospital radiation team prepares Ollie for total body radiation, sticking a device to his back to measure the exact amount of radiation being delivered.]

- Other "ologists" and specialists that treated his specific relapses and side effects including neurologists, endocrinologists,  cardiologists, ophthalmologists, occupational therapists, physiotherapists, respiratory therapists, bone specialists, auditory specialists, retina specialist, dental clinic, etc.

[Photo Description: Ollie prepares to have a pulmonary function test in February 2021 at CHEO. The respiratory therapist in PPE with his back to the camera is a childhood cancer survivor himself.]

- ER staff at both hospitals - when you are a cancer family you are bound to spend a lot of time in emergency and we are grateful for your efforts to minimize our wait to be unexpectedly admitted when needed;

- The Vein Access Teams (VAT) in both hospitals who quickly became among the most important people on our team;

- All others in senior leadership, administration and services - e.g. scheduling, admitting, cafeteria, laundry, maintenance, technology, parking, HR, finance, fundraising, communications, etc. I am certain you rarely get thanked by families, but all of you keep the hospital running seamlessly and we know during the pandemic this took extraordinary effort;

-  The Apheresis/Dialysis Unit for helping us so much on stem cell collection day and showing us what a fun place Sick Kids could be with your Tick Tock Dancing to entertain your young dialysis patients;

- Food services and restaurant/cafe staff who stayed open and served us during the early days of COVID despite the fear and unknowns;

- Anyone and everyone else I have forgotten to mention by clinic unit or specialty here. It literally took an army and my poor brain is still reeling at the magnitude of what you all did for us.

Gratefully we remember all of you and your contributions on this day and every time we look at Ollie, as he is living proof that an army working together with science and hope makes miracles together. We will never be able to adequately thank you all for saving his life, so we will keep doing whatever we can to help you to at least save others, too, through our advocacy and fundraising efforts. Know that we will never forget the thousands of kindnesses that you sent our way.

With love and gratitude always,

The Acosta-Pickering Family:

Dawn, Mario, Abby and Ollie

P.S. - Please share this with any who may have helped us at all four hospitals or who just need to be reminded of how important their work really is today and everyday.

Faith In a Better Tomorrow

I have not been okay today. I knew it was coming and tried not to make a big deal of it or to let the memory of January 25th, 2020 increase my anxiety or sadness, but it was too much for my battered brain and heart to ignore.

This was the worst day of my entire life last year. Worse even than diagnosis day. On this day last year Ollie had gone blind, I was told he had relapsed in his brain and spine, had to tell Mario and Abby, heard that he'd need radiation and a stem cell transplant, and he was transferred to ICU to manage his incredible pain and blindness. 

How do you ever forget your seven year old crying that he felt he was dying and begging you to make the pain stop? How do you forget having to cause your husband and daughter incredible agony because you had to tell them that lymphoma was trying to take over your baby's brain? How do you unremember sitting in a room of doctors who told you that they had no idea why your son was blind, if he'd ever recover any of his vision or if their treatment would definitely get him into remission for the stem cell transplant he'd now need?

I'll never be able to unfeel any of the fear, anxiety or sorrow that I felt on this day or throughout this week last year. I've never been so afraid in all of my life. Diagnosis was scary, but also a relief as we finally knew what it was and had a plan of attack. We were told it was a very treatable form of lymphoma and the ALCL 99 chemo protocol worked in about 75% of cases. Great odds we thought! 

Never did we imagine that he'd be in that dreaded 25% for whom it wouldn't work with the basic 6 rounds of chemo. Relapse and blindness came out of nowhere and thumped us on our butts good. For a brief time I was really feeling desperate and uncertain that he'd make it. My faith had been strong, but felt shaky that week. When I think back to that week I am always, reminded of "Footprints in the Sand" whereby I now know Jesus was carrying me. In retrospect, God sent me help to bolster me and prop up my faith. He sent me incredible messages of love and support from so many people. He sent dear friends to feed and check on Mario and Abby while they were ill.

He also physically sent me: 

- Roisin and Rich with gifts and hugs from St. George on the very day we were moving to the Pediatric ICU and were so overwhelmed;

- Nurse Kim in the PICU to help us through the night he was having seizures that I thought might be a stroke and to insist the next night that I take a parent room to get some real sleep for the first time in over a week while she and another nurse stayed with Ollie non-stop;

- Maria and Toni to nurture me and give me emotional support and physical respite when Abby and Mario came down with strep throat the same week that Ollie was in ICU;

- Vic and Jenna to bring Ollie out of his pain-induced coma-like state to show me my boy was still in there;

- Nurse Maddie whom we loved from 4 North with us in the PICU during a floating shift to help us through some difficult procedures that week;

- Jamie who actually worked in PICU, but was not assigned to us came to see us during her shift every day we were in the PICU bringing fresh fruit, snacks and the best and most needed hugs.

And there were so many other Godwink moments that I now understand to be signs from God that He was with us in our worst moments. 

That week changed the trajectory of our lives forever in countless ways. Naturally the blindness after a full year has completely changed how we support and parent him, how we feel now about ability (not disability), and how we help him to navigate and view the world. But it also changed our family's genetic footprint and our appreciation of medicine and science. That was the week we all went to have our HLA matching done to see if any of us were a stem cell match for Ollie. It started our less than smooth path to stem cell transplant and in the end made us all believers in the powerful combination of faith, science and medicine. 

He had another chimerism test last week. It's the fourth since transplant 6 months ago and it's still 100% Abby's cells. His "Abby treatment" has been unbelievably successful after so much agony and fear. His oncologist says that they've rarely seen a transplant (especially a half match) go so well and they wish they could bottle Abby's cells for others. She does, too. 

It's like these monumental days are now etched into our DNA and sometimes even without knowing why, each of us has reactions to the memories (in my case consciously, in the case of Mario and the kids, subconsciously as they don't remember the dates like I do). Over the last few days each of us has had our moments of freak outs and melt downs that are seemingly unrelated, but I know that they are connected to last year. Whether I somehow give off some subliminal signs or secret code that we should all be remembering these milestones or my anxiety and sadness simply adds to their underlying and omni present similar feelings, I don't know. I do know it's hard and that as my therapist says, it's also necessary to remember and feel it all to work through it and get past it. 

Other cancer moms tell me you never forget, but it does get easier the farther you get away from cancer treatment. The thing is, you never get away from it. The long term effects will always be with us and as Ollie grows up we'll have other potential physical side effects to contend with. 

Today he had an ultrasound on the back of his neck. On the very day that last year his relapse was confirmed and he went blind. What kind of cruel irony keeps putting me at CHEO for tests on already difficult days? It can't be random. So it must be for a reason...maybe to remind me of how strong we are? To show us how far we've come? 

Maybe it's to give us better memories on these days going forward. Today we heard that there is no bump in the ultrasound and our radiologist and oncologist believe it's a simple knot in his muscle. We're going to keep an eye on it, just in case, but unlike that first ultrasound on his originally very visibly evident bump on his neck, they saw nothing to be concerned about. Still, the initial fear in Mario's eyes when we got home and Ollie started talking about the radiologist coming in to look at it himself made me want to weep or rage that this anxiety and the unknown will always torture us to some degree. Thankfully I was able to reassure him that the radiologist saw nothing and a call shortly after we got home from our oncologist confirming this was comforting. 

So we've had an emotionally exhausting day, but it's turned out so much better than this day last year, so we'll take that as a win. I'm not okay, but I am getting better slowly as I work through the last 15 months of fear and sorrow, one day at a time. January 25th, 2020 took a lot from us, but it didn't take our Ollie or our faith.

For those of you who tell me we remain in your prayers, thank you so much. Days like today are why we still need them and are grateful for them.