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.

Vision for the Holidays and 2022

[Photo description: Ollie is dressed in a hospital gown and snuggled by Dawn as both wear masks and sit in the waiting room at CHEO's Surgical Day Unit.]

Ollie had eye surgery on his right eye at CHEO on Wednesday, December 15th. He was a bit nervous the night before and the day of, but overall in good spirits and a total trooper as we got ready and set out for CHEO that morning. 

As usual he wasn't thrilled about the waiting, but at least he's no longer on steroids like he was during cancer treatment. Then he used to rage if he waited too long for anything, especially when he was NPO (Latin for not by mouth or no eating before surgery). 

[Photo description: Ollie waits in the waiting room of the Surgical Day Unit while playing with fidget toys to pass the time.]

He was getting a bit grumpy by noon when he was in the Surgical Day Unit ready to go and just waiting for them to take him in. After getting his vitals checked and having drops put in his eyes, the nurse gave him a new owl stuffie as a reward for his patience and cooperation. 

Finally, about 20 minutes later than planned, they came to get us. On our way into the prep/recovery area, Ollie had a little bout of nerves. It was weird this time because he's never been well/strong enough to walk in instead of being wheeled in on a gurney. He got angry at me when I made him go to the bathroom (I had to remind him that if he didn't he might have an accident when he was sedated), then burst into tears. Naturally this was just as the doctors had arrived and wanted to talk to me about the plan. 

[Photo description: Ollie wears a hospital gown, hospital pants and mask while sitting in the waiting room with his white cane and new owl stuffie.]

Thankfully they were preoccupied with finding the anesthesiologist who had been delayed in her earlier surgery, so they gave us a few moments to get ourselves together and ready. As he hugged me and calmed down, Ollie was very apologetic for his outburst. I reassured him that he didn't have to apologize for feeling overwhelmed, everything was going to be okay, and surgery was going to go well. After some big hugs, Ollie was ready to go. 

To my great surprise, despite COVID-19 risks they allowed me to walk him right into the operating room. This required me to be in full PPE, but made both of us feel more comfortable. It was an OR way in the back of CHEO and the largest I had ever been in with Ollie. The anesthesiologist knew Ollie from previous surgeries and procedures and was so kind as always. Ollie being the pro he is had asked to be sedated with the gas (what a bizarre world we've lived in that my 9 year old knows the menu of sedation options). The anesthesiologist was happy to give him what he asked for and even made the gas smell like strawberries, so he was out before he counted to 20. 

They invited me to kiss his head through my mask and promised they'd take great care of him. I thanked them profusely and walked out feeling confident that they would keep him safe. Honestly this was easiest of all of the many times I've had to leave him in the hands of the amazing team at CHEO because I knew it was going to work out.

[Photo description: Dawn and Ollie take a selfie in recovery after Ollie's surgery. Ollie is wearing an eye patch and lying in a hospital bed looking tired.]

Dr. Michael Dollin (retina specialist at the Eye Institute at The Ottawa Hospital) and Dr. Jeff Mah performed his victrectomy and lasering. Surgery took about two hours, and they came down to see me in the waiting room afterwards, smiling behind their masks (you can tell). They were happy to report that surgery went as well as they could have hoped and he was doing great in recovery. They confirmed that it hadn't been a retina detachment, but indeed a vitreous detachment (as suggested in the MRI report, but could have gone either way). They were able to repair the main blood vessel attached to his retina to restore proper blood flow, clear out that pool of blood that had been obstructing the bit of peripheral vision he had before, and had put a half gas bubble and a couple of stitches in his eye to hold everything in place. Both will dissolve as he heals.

[Photo description: Ollie feeds himself chicken noodle soup with rice at home.]

Unfortunately, they reported that he did have the beginnings of cataracts in his lens (very common in cancer patients after chemo), so they decided to remove it because it was not usable for him that way anyways and healthier to remove it.  The lens is used for focusing (just like the lens of a camera) and because his optic nerves are already severely damaged from the lymphoma, even with a healthy lens he wouldn't be able to see details right now. Our goal is to keep his eyes healthy so that as science evolves and it is possible to fix his optic nerves, he may have the possibility of more sight one day if he wants it. Dr. Dollin explained that it is already possible to have an intraocular lens (IOL) implanted and as science advances and his optic nerves can be fixed, they could add an IOL in future to enable him to see again. Overall I was so grateful that everything went well and glad I'd listened to my mother's intuition again and pushed for the surgery because it was successful.

[Photo description: Ollie sits on the sofa with a table and a Beyblade stadium in front of him as he prepares to rip his Keyboard and Mario's hands can be seen reading to rip.]

Ollie was groggy in recovery, but felt okay otherwise. He was thirsty and eager to leave and go to McDonald's since he hadn't eaten all day. Given he was still tired, he rode out in a wheelchair and Mario picked us up. By the time we got home and he gobbled down McDonald's, he was almost back to normal. He is absolutely incredible.

When he discovered he was well enough to Beyblade, all was right in his world again! 😜  He honestly he's had no pain, just some minor itchiness as the sedation came out. He has two eye drops to take four times daily for the next few weeks until the eye is healed.

[Photo description: Ollie sits on the sofa wearing a t-shirt shirt and pajama pants with Santa hats beside Hope.]

He slept well and got up early. About mid-morning we went to The Eye Institute for a post-operative check-up. Everything looked great, there was minimal bleeding from the surgery and Ollie felt good. He was able to see light already and the doctor expects it will get even better as it heals. He'll continue to be legally blind, but it looks likely that he'll recover some peripheral vision to see shapes and shadows. We were told to just have him wear the eye shield to sleep and by day only wear the patch if he felt he needed to. 

[Photo description: Dr. Mah examines Ollie's eye in a darkened room at The Eye Institute the day after surgery.]

The hardest part about his recovery was just keeping him calm and inactive. Thankfully he didn't need to have a full gas or oil bubble in his eye and have to stay face down for days, so that was a relief. We'd read about how this surgery could require complete bed rest and doing nothing for up to 4 weeks! Naturally Ollie  continued to be full of energy after surgery, so there was a lot of me reminding him not to bend, bounce, run, yell, or get angry. We needed to keep his pressure down to minimize any bleeding. The week went fairly well.

[Photo description: Ollie clowns around while leaving The Eye Institute, holding his cane like a sword and wearing a black eye patch like a pirate.]

Six days later we went back to The Eye Institute and Dr. Dollin said everything looked great, his pressure was normal and declared him already able to get back to "normal daily activities". I explained to Ollie that this still meant he needed to take it somewhat easy and there would be no skateboarding or sports yet. Dr. Dollin gave us instructions to taper his drops over the coming weeks and said he'd see us in 3-4 weeks when we could talk about a plan to do the second eye since the first went so well! 

Victory! I feel vindicated after being the pushy mama for the past 9 months since I noticed Ollie struggling in the darkness and insisted we needed to fix this if we could. I am grateful as always to Ollie's brilliant, yet humble doctors who treat me like a partner in his care and listen, even when they may at first think I am the overreacting mama. 

[Photo description: Ollie and Mario stand in front of the Christmas tree wearing matching work overalls, t-shirt shirts and tuques. They are smiling while Mario has his arm around Ollie.]

With COVID numbers exploding everywhere (it's estimated that numbers are at least three times higher than reported since so many people are isolating and there aren't enough COVID test), we're still trying to keep Ollie from getting it, even if Omicron seems to be a milder form. The thing is he only had one vaccine so far and we don't know what his short- or long-term effects might be if he got it as a stem cell transplant recipient. Sadly we know many families now who have gotten it here and in Toronto and are facing Christmas in isolation. We feel for these families and hope they'll weather it easily and quickly. A Christmas in isolation certainly is not the worst that can happen to a family, as we know too well. This is our third in isolation and we'd do as many as needed to keep our family safe and well. 

[Photo description: The package received from Santa through Canada Post elves. The envelope is shown at the top, Abby's printed letter on Christmas paper is on the left and Ollie's Braille letter is on the right.]

We'll end on a happy note because despite everything, we are here, happy, healthy and grateful. 

Ollie asked me to write down his Christmas Letter to Santa as he dictated it months ago. In it he asked for not only a toy for himself, but also that Santa bring something special for his sister Abby who had given him stem cells so he could live (my eyes were leaking as I wrote it). Before sending it off via Canada Post, I added a note that mommy had written what he dictated because he went blind during cancer treatment, but was doing great thanks to his stem cell transplant.

This week a package arrived from Santa addressed to Ollie & Abby. There was a lovely letter for Abby (even though she never wrote him one) that noted that she was a true hero because of  her "overachieving stem cells". It also mentioned Ollie's CNIB Buddy Dog Hope! Clearly the Canada Post volunteer elves did their research and knew our story! 

In addition and inspiring my tears again was a letter in Braille for Ollie. He was so excited to receive it written in a way that he could read it! Many thanks to Canada Post and their amazing volunteer elves helping Santa to reach ALL kids! 

To close, please minimize or cancel your gatherings to reduce your risk of COVID. I know it's tempting to see everyone you planned to, but we'll all pay for it in early January when stats are even worse. Even if we don't end up in lockdown again, we'll likely end up home with online learning again if we can't control cases over the next 10 days. Trust me, when you're together with your immediate family or just a few trusted loved ones, the holidays can still be beautiful. Wishing you all safe and happy holidays.  Praying that 2022 is a better year for everyone!

Signs, Survival and Winning Battles

Every time we go to CHEO we pass Cancer Survivor's Park. Before cancer (what we refer to as BC these days with no disrespect meant to Christ Our Lord) I always thought this was a strange place for a park given how busy this intersection is.

I never understood that this was a gateway for Cancer families. Both a beginning and an end to their cancer journey in a way. You pass through on your way to the Ottawa Regional Cancer Foundation (located just behind the park), the Head Office of Canadian Blood Services, CHEMO and The Ottawa Hospital with it's Cancer Centre. You can also pass it on your way back. 

The sculpture is by a Mexican sculptor named Victor Salmones and is entitled, "Cancer: There is Hope". The piece features eight life-size figures passing through a maze depicting cancer treatments and success. The most prominent of these is at the front of the park, emerging from the maze with the parents looking determined while relieved and the child looking carefree and happy. 

As we travel further down Alta Vista Drive towards the hospitals, the sign in front of Canadian Blood Services ALWAYS flashes, "Stem Cells for Life" at me as I pass. 

Until Ollie had cancer I missed a lot of signs. Like he says, now I can see the light while he lives in the darkness. Now I try to read the signs for both of us.

So all signs have pointed to him being better and I desperately wanted to see those signs, but worried I was misinterpreting them or reading too much into them.

Turns out I wasn't! 

REMISSION!!! WOOHOO!!! GOD IS GREAT (and so is science!)!!!

 

The lumbar puncture showed no lymphoma cells in his cerebrospinal fluid. The MRI shows that the lymphoma lesions that were on the lining of his brain are gone and there is no evidence of cancer anywhere. While his optic nerve still looks inflamed,  they believe it is due to it continuing to heal and said it looks better than when we last went to Toronto in remission. In our Ottawa oncology team's opinion the Lorlatinib and radiation worked and he is in remission! They've sent our results to Sick Kids Hospital in Toronto to get their opinion on next steps but are recommending stem cell transplant as soon as possible. 

We should hear about next steps in the next few days. Assuming Sick Kids agrees, we will likely be headed there for stem cell transplant in the next couple of weeks. Second time WILL be the charm for us and he'll finally get Abby's selfless stem cells and her strong immune system with them.

So there was happiness here tonight, although we're cautious because we've been here before on the brink of a potential cure, only to have it ripped away from us at the last minute. Abby and Mario really want to downplay things until he is fully cured. 

Ollie and I have spent the most time in hospital, in the physical and emotional reality of this disease day in and day out. We're going every battle together and forced each other to keep going no matter what. That's not to say that Abby and Mario haven't felt all of this deeply, but I sat in ICU for a week with my son when he was seriously on the precipice of death (while Mario and Abby were ill with the flu and couldn't come to the hospital), begging God to save him. I know too well how lucky we are to have made it back from there and to have this second opportunity at getting him the transplant. The foremost expert in his disease in Canada honestly thought this was a long shot. 

So we'll celebrate this victory (our Ottawa team says it is a BIG victory and how amazing Ollie is to have gotten here) even if only by being silly together tonight, playing games and watching Ollie gleefully (blindly) driving his remote control car around the house. 

The Lorlatinib is proving to be a miracle drug for us and another family we have connected with in the UK whose daughter is on it too and got her transplant almost 4 months ago. Remember that last time he had only been in remission for about 5 weeks when he relapsed. It's also the extra insurance that we may need to keep him in remission this time until we can get the transplant. 

Thanks to all of you for nurturing us through all of this. We haven't won the whole war yet, but this was an important hill to capture. This hard fought battle has turned things in our favour.  Thanks be to God and all of you for helping us to get here!

We'll keep you posted as we know next steps. Please continue to keep us in your thoughts and prayers. While this is all honestly miraculous in many ways, and I hate to be greedy, the real miracle we need is a successful transplant. Let's hope Sick Kids agrees.

Even Warriors Need Rest

Radiation is finished! Thursday was his last session and Ollie was so tired that he slept through most of it. Until the last 11 seconds that is, when the machine went down. Unfortunately it takes 7 minutes for the machine to boot back up and Ollie was stuck in the machine. The team in Radiation South was amazing. Ben and Riane went in immediately to calm Ollie and make him comfortable so he wouldn't move in order to finish the treatment without having to do the whole 10 minutes again. You see it has to be precise, so if he moved they'd need to re-scan him for 3 minutes to get a picture of his position and then calibrate the machine to do the 10 minute treatment in exactly the right places again.

Ollie was stressed and asking them to start the machine NOW. Ben was incredible, going to the back of the machine to reach Ollie's head, rubbing his head gently and talking to him about every step the machine was taking and what would come next. He also took the mask off so he'd feel more comfortable since the last bit was at the bottom of his spine and he knew Ollie was feeling caged. It was evident that Ben has a son close in age to Ollie and that he intuitively understood how scary and frustrating this would be for a 7 year old. Riane gently touched his legs while reminding him not to move. I did same on the other side. Julie was in the booth talking to Ollie over the speaker as each step was happening with the machine. 

They got the machine up, we told Ollie we'd run out and then run back in after 11 seconds and went to the booth. Naturally the machine went down again! So Ben counted down 11 seconds for Ollie on the speaker and we got him out. He did this to keep him calm and not stress him about the treatment not finishing. Ben then explained to me that at the bottom of the treatment there is about 1 cm of air/nothing and we'd be at that point anyways, so there was no effect from not finishing 11 seconds and it was not worth trying again and traumatizing Ollie further.

Then the whole team (including Danika who had not been with us that day) came in, gave Ollie a gift of Hot Wheels cars, chocolate and gummy bears and made a huge deal over how great he was at radiation, that he was all done and how much they'd miss working with him, but that they were glad he was going to get well and not need them anymore. I was teary and thanked them profusely and of course I forgot to get a picture! 

They also let him keep his radiation mask! Mario was super impressed by it. Abby was awed and a bit horrified at the idea that it held Ollie on the table so he was trapped during his treatments. He plans to mount it to the wall in his room. Every boy's dream! LOL

The last few days have been pretty relaxed. Ollie's been more tired thanks to cumulative fatigue from radiation so we've been encouraging him to rest and listen to his body. He's also had his white blood cell count, platelets and neutrophils go down significantly, although he's still slightly above neutropenic. Given this we have to take it easy and stay away from even socially distanced visits for now. Fortunately Ollie seems to get this and is not fighting us even though we know he misses seeing people. We're all pretty tired and feeling the effects of three weeks of constant worry due to daily appointments, so trying to rest.

Friday Ollie had a virtual physio appointment online. He worked really hard and showed his physio Allison how much stronger he's getting and his new Fitbit for kids (thanks Gamma and Bumpa) that counts his daily steps. 

Abby has spent a lot of time entertaining Ollie over the last few days. One day she let him do her makeup. 

He did pretty well for a blind guy and even let her do his. 

One day he may regret letting me take these pics! 

Then they put on hula dresses and leis and danced around laughing hysterically. It reminded me of when they were little and Ollie would let Abby dress him up like a princess. He was always a good sport about it and was just thrilled that she paid attention to him.

Hearing them laugh together makes me happier than I've been in 7 months. And when they act silly and laugh more, so do Mario and I. Laugher really is contagious.

They also did some TikTok videos together. 

He just wants to be wherever we all are right now. Especially near his sister. 

Abby has been having bad dreams lately and having trouble sleeping other nights. On Friday she met with the CHEO Social Worker, Sherley, who was very helpful. We also have the option of seeing the child psychologist if need be, too. Thankfully my children know that mental health is super important and there is no shame in seeing a therapist when you need to talk and work some fears out. 

Her lovely teacher also contacted her to remind her that her wellness is most important and she shouldn't put added pressure on herself nor worry about September as she is a bright girl and a strong student and will be fine even if she needs to take this time off from school work. We are so very blessed with the beautiful souls who teach our children. 

Even Ollie has realized that whenever he goes back to school his big sister will no longer go there and he was very sad about this. I told him when he starts high school Abby will be in her last year, so they'll have another year in school together again in future.

He's losing the hair that just started to grow back. A side effect of radiation...

It doesn't bother him, though as he knows it will grow back again in future.

Abby finally spent some of her birthday money on an Ikea vanity table. It arrived today and she had her first Ikea assembly experience. Real life lessons during the pandemic that will prepare her for life on her own one day. LOL

So we're playing Beyblades and Bakugan and trying to get organized after being away so much over the last 6 months. All is well in our world for now.

I'll likely write a little less over the next month unless there's real news to share. I have a few ideas for blog posts I've wanted to write but not had time to given how rapidly things have changed in our world over the last months, so I'll likely write a few of those to stay in touch. Stay tuned, enjoy the beginning of summer and I hope we'll have good news to share soon!

The Pain of Empathy

I just read a tweet from Canadian Blood Services about a young boy named Cameron who was a frequent recipient of blood transfusions and whom they featured on their web site last fall. He was 8 years old and just died of brain cancer. I don't know this family, but I am shattered by their loss. 

Empathy is something I've generally considered to be a beautiful, important human ability. I have always considered myself to be an empathetic person and have always been glad to see it in my children as well. On the positive side it enables you to connect with and feel deeply for others...to put yourself in their shoes and try to understand how they feel and what they're going through. On the negative side when you're an empath and read a simple tweet like this, it stabs you in the heart. You feel so genuinely and deeply for others and wish desperately to take away their pain because if it hurts you this bad you can hardly imagine what their real pain feels like. 

I would have felt like this even before Ollie's cancer, but now every story I read like this leaves me aching for these families. It makes me want to rage at the injustice that these beautiful little innocents are dealt. It sometimes makes my faith in God and his abilities a bit shakier. 

I'll be okay tomorrow, but for this moment I am letting myself grieve for this angel I never knew. It is necessary to let the emotion out. Most days I'm great. People ask me how am I "really" doing and most days I am really okay. I am focused and my glass is half full. But some days it just hits you in unexpected waves of emotion. 

For example, this weekend while taking a short drive with Mario and Ollie to do a curbside pickup. I was sitting in the back with Ollie and he was really happy. Singing along with his favorite songs on his playlist. All songs about strength, fighting, not giving up and there he sat battling lymphoma, blind and just happily singing his little heart out about how he still has fight left in him. I got a lump in my throat and tears poured while I tried not to sob and ruin his great mood. 

It happens to Mario, too. We look at each other and have to quickly look away for fear of scaring the kids. They've seen us tear up, but sobbing we do only when they're not going to see it because we don't want them to think we don't believe we'll beat this. We will. We just have perfectly normal moments of agony and need to let them out.

For those of you who are empaths, too. We are sorry to cause you pain, but are so thankful that you are in this with us.

Fortunately, Ollie has generally been happier lately, and desperately wants to see friends his own age after seeing almost none for the last 6 months. His neutrophils and all of his blood counts are still high despite radiation, yet we know that his mental health has suffered greatly from the necessary isolation that kept him from getting sicker. 

Since we know we need to keep him motivated to get through this part and eventually a stem cell transplant, we decided to allow a couple of visits with friends he asked for whose families we know are being diligent about social distancing, hand washing and wearing masks in public.

We were grateful to dear friend Jamie (who is and manages a team of respiratory therapists at CHEO and has many times come by when we were admitted before COVID-19 for hugs or to drop food for us) and her teenage son Jaden who came by Saturday for a deck visit. It was so lovely to finally catch up with her after almost two months in Toronto and Ollie loved having a big kid pay attention to him. Their family understands very well the need to be careful since Jamie is potentially exposed every day. 

We also had a couple of visits with some of Ollie's closest friends from school (with whom we are also friends with their parents). We explained to these parents that while we are pretty confident we do not have COVID-19 (Ollie had 3 negative tests at Sick Kids because they did one each time he was admitted or in the ER), we are at the hospital daily, so we may be more of a risk to them then they are to us right now. They both showed incredible concern to keep Ollie and us safe. We agreed to deck visits with masks and hand sanitizing and minimizing touch, recognizing that Ollie desperately wanted to play Beyblades with them, too. So one day we welcomed mom Sarah, Olivia (from his class, daycare and soccer team) and Charlie. The other we were happy to have mom Sarah and friend, classmate and daycare buddy James. 

I didn't take many pics because I was just enjoying seeing him interact with peers for the first time in so long. He was so happy afterwards that despite the slight risk to everyone, I felt it was the right thing to do. How can we torture this boy with treatments and tests constantly and there not be any short-term rewards or reminders of why he wants to get well again?!

That said, with things slowly opening up again and given not everyone is choosing to wear masks and maintain that 2 metres of social distance, we know we'll have to go back to being isolated soon as the risk for cross contamination becomes greater. People will start to see other friends and family, too and each interaction multiplies our potential for risk. Plus, when he's back in remission, we plan to go back to Sick Kids for a stem cell transplant to finally give him Abby's beautiful stem cells and that will mean more months of complete isolation.

Today radiation was harder because we had appointments at CHEO with Dr. Pinto and in the Ottawa Cancer Centre's radiation clinic with Dr. Chang before his radiation session, and that agitated him. We had to stop the radiation treatment a couple of times to calm Ollie. But, we've done 6 now, so tomorrow we tip into the second half! 

A CT is now planned for Friday morning before radiation. This will confirm if the drugs and treatments are working or not. On the one hand I'm not looking forward to the stress of it and getting him to drink the orange contrast drink. On the other I am desperate to know if this in combination with his Lorlatinib is really working. Either way, we'd continue with this treatment until radiation is done next week, but it would be such a motivator to know for sure that it's all really working instead of just being hopeful and thinking that I only see improvement because we so desperately want it. 

As of today it's been exactly 182 days or 6 months since Ollie was diagnosed. Originally his treatments were going to take 6-8 months. I thought by summer he'd be well and we'd take an amazing trip somewhere as a family to celebrate. Now we may have that much more time ahead of us on his journey to get well and then some. He's being granted a wish from the Make A Wish Canada Foundation, but he's chosen a trip to Atlantis Bahamas because he loves waterslides and wants to swim with dolphins. Sadly because of COVID it might be years before we can take this trip (thankfully they give you until your 18th birthday!). 

So rather than stress about the CT (I've already had a tight neck and headache off and on for 4 days over the radiation) I'm going to let go and let God.  I have learned that obsessing about any of this does not help us to control it or feel better about it. That He is the only one who knows the real plan or outcome of any of this. So I am asking Him constantly and believing that He will gift us what we are asking for. That Ollie will survive and thrive after all of this.