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.

Vale annus horribilis (Goodbye horrible year)!

Like everyone else, with it being New Year's we are looking back and reviewing the year we've had. Many many times in the last weeks I've reflected on the happenings of 2020 and re-read my blog posts from the past year. Often they caused tears to stream uncontrollably. Sometimes they brought laughter over the unbelievable absurdity of what our life has been like this year. Always they inspired gratitude for all that we have overcome with your help.

Last New Year's Eve Ollie and I had just been admitted to CHEO for round 2 of chemo.

While it's true that we have had a pretty rough 2020, we are ending it with all we need - namely our family together, happy and healthy. Sadly we know families that had a much worse year than we did and have lost so much, like their innocent babies being taken prematurely by cancer and loved ones who succumbed to COVID-19. Our hearts have ached from their losses and our prayers have begged for their healing. Thankfully we also know many strong families who have overcome critical illnesses and their side effects to finally arrive on the path to wellness. 

 Family together after Ollie's successful engraftment during his stem cell transplant.

When I asked Ollie if there was anything special he'd like for New Year's Eve, he asked for a vanilla cake with sprinkles. Fortunately this proved easy to find through Instacart when we ordered groceries. The shopper asked if we'd like to have anything written on it. It seemed to us to be apropos to eat a "Goodbye 2020" cake. This year we have gotten our cake and tonight we ate it, too. 

We also let Ollie blow out "20" candles and make a wish to usher out the worst year of our lives. Again this seems completely right given this past week was actually his half birthday (when they were little we used to celebrate half birthdays because a year was too long to wait for cake!) and technically 6 months in remission for him and in a mere three weeks it'll be 6 months post-transplant. If those aren't reasons to grant the kid a wish, I don't know what would be.

As we ate cake, we talked about what we are grateful for this year and our biggest lessons learned. Here are our lists:

Ollie:

1. I am grateful for my family and friends who love me and helped me to get well.

2. I learned to be grateful even though my treatments were hard because many people don't survive cancer and I did.

3. I am grateful for chicken burgers.

4. I am grateful for my sister who saved me so I can still love AND annoy her! 😝

 Abby finally reunited with Ollie after he relapsed in his brain and finally got out of ICU. This was the day we went to have our blood tests done to see who would be the match for Ollie's stem cell transplant. Abby always said it would be her.

Abby:

1. I have learned that we should all be grateful for what we have today, because tomorrow is uncertain.

2. I have learned about and am grateful for makeup which has been a good diversion for me this year.

3. I am grateful that I still have my brother.

4. I have learned what is really important in life - being part of a family that loves each other.

5. I am grateful that none of us have gotten COVID-19 and passed it on to Ollie.

6. I am grateful for friends who have loved me and made me part of their family this year when mine couldn't always be together.

Family Day in February 2020. First time we'd all been together in over a month. Longest time we'd ever been apart and worst month of our lives.

Mario:

1. I have learned patience.

2. I am grateful for the family that I have.

3. I am grateful for the people around the world, some who I have never met, who cared about and prayed for my family.

The family in Toronto after Abby donated her stem cells and Ollie relapsed in his brain again. Waiting for a new drug to work (it didn't, but later going home for radiation and another new drug did) and trying to make the best of things while we waited and prayed for our miracle.

Dawn:

1. I am grateful to God for saving Ollie with the help of medicine, science and Abby's stem cells.

2. I always worried that Mario or I would become very ill and wondered how we'd weather it without family nearby, but have learned how incredible our friends, family and community are and that they have our backs and have been and will be there when we need them.

3. I am grateful for people who love my children like their own. For those that came to the hospital even when I know it was hard to see Ollie so sick and for those that lovingly watched over Abby and got her through tough times when I couldn't be there. 

4. I have learned that Nurses, Doctors and medical staff are superheroes in scrubs. That they are dependable, nurturing and truly care about their patients and their families. That when you use your voice in a positive, yet assertive way, the best ones will listen and let you help them to save your loved one.

5. I have learned that you can get used to living under the most stressful and bizarre circumstances if you stay hopeful and focused on getting through the next thing you need to do and not look beyond today. As a former strategic planner who is always focussed on long term goals this one was really hard for me.

6. I have learned how strong we all are, yet how important it also is to let yourself be vulnerable and feel your feelings. That feeling and showing them to others are signs of strength, not weakness.

Nurse Joan at Sick Kids Hospital supported us through Abby's 5 hour stem cell donation process. 

Jenna and Vic visit Ollie when he was in the ICU and Abby and Mario had strep throat and couldn't come. I was so grateful for them and two other dear friends who came in our darkest hours and supported us.

Not surprisingly, we're not sad to see 2020 leave as it truly has been our "annus horriblis", but we also realize that we have learned many important lessons and received many blessings this year because of our struggles. 

Wishing all of us a 2021 filled with love, laughter, joy and health!

Forever changed or scarred?

I didn't want to steal Ollie's thunder with a post the same day as his and as usual his words were fewer,  but more powerful than any of mine could be.

Nevertheless, I want to share some thoughts and observations to mark one year since Ollie was diagnosed with Anaplastic Large Cell Lymphoma ALK Positive. 

I didn't sleep much last night. I kept thinking about last year on the same night. We'd been to CHEO the morning of the 18th for a one week post-op follow up after his biopsy. Dr. McCormick the pediatric specialist that we'd been seeing in the Ear, Nose and Throat Clinic that we'd been seeing to that point. She was very apologetic that she didn't have results yet and said she was pushing for them. She told us if she called us and told us it was just the relative of Tuberculosis they suspected it was, we'd just keep taking the medicine Ollie had already been started on. If it was more complicated she'd ask us to come in to meet. 

By the time we got home from CHEO on November 18, 2019 her office had called and asked us to be there the next morning at 7:30 before her first surgery. We knew this was bad news.

After a year, every moment of that day remains vivid in my mind. You'd think I'd try to repress it, but given I've always been the type to deal with hard things head on and try to learn from them, I guess it is natural that I'd remember. And I guess you'll always be able to recall the day that your whole life and outlook changes, and when your priorities truly crystallize.

I remember being very scared at first and then numb as we waited the two hours to see the oncology team. So much information came at us and overwhelmed us, despite the doctors speaking slowly and kindly and giving us opportunities to ask questions. I remember my main moment of being choked up came when they were talking to us about the possible side effects of chemotherapy. 

They told us he may be infertile and never have children of his own. My eyes welled up with tears as I struggled with that. Mario being a man didn't really get it and reminded me, "But he'll be alive!". I told him I knew that, but as his mama I was imagining him falling in love one day and having to tell his partner that he may never be able to have a child of his own with them. That he may never have the overwhelming joy of welcoming his own baby into the world at the moment of their birth. That his love may reject him as a life partner one day because of this. 

The doctor was a mama and in fact was pregnant with her second as she sat there with tears in her eyes and firmly told me, "If he wants to be a father when the time comes, he will be. There are other ways." 

Later that day I picked Abby up from school and told her about her brother. One of the many hard moments of the past year. In her despair when I told her she sobbed, "But I don't even have a spare! He's the only one I've got!" I assured her that while I had multiple "spare" siblings if that had happened to any of mine, the fact that I had backups wouldn't have made it easier. Coincidentally later that evening when she'd calmed down and we could tell her what treatment and next steps would look like, one of the first things she asked was whether he'd still be able to have children. She wanted to know if he'd be a daddy and if she'd ever be an auntie. Like mama, like daughter. 

I feel like I have an emotional hangover today. I've gotten that a lot over the past year. 

Abby's sad today thinking about all that's happened in the past year and how much her own friends got her through when she was most sad or afraid. She's wishing today that she could be with them and hugging them for all of the emotional support they gave her. But instead we're home avoiding COVID-19. What a year.

We talk a lot about the beauty of adoption now. Without saying so, we're prepping Ollie for the long road. After chemo and radiation it's highly unlikely that he'll ever have his own genetic child, but then again, I'm on various Facebook groups for caregivers and survivors of cancer and bone marrow transplants and I'm often shocked by the stories of those just like Ollie who miraculously went on to have them. If Ollie's taught us anything this year, it's not to count him out or assume he'll be typical. Always atypical. 

A year ago they told us it would likely be 6-8 months of treatment with 6 rounds of chemo. I stupidly thought we could plan for the 6 rounds of chemo and 8 months worst case scenario. That if that's what we expected, anything better than that was a bonus. Now even after a year when he's been through so much and still rang the bell a couple of weeks before the year was over, I think we were lucky. Because now I know and understand how bad it can get and that it can get even worse than we had it. And Ollie had it bad and things didn't look good for a while.

Still others we have met this year have fought for years to get their child well. And some fought and went home forever without their babies. I am forever changed by the bravery and resilience I have witnessed in all of these families. 

Cancer is so far reaching it honestly breaks my heart in two sometimes. I spoke with someone today I've gotten to know a bit who's helping with Ollie's various needs and she confided that it's personal for her to help him because she lost her young husband a decade ago when he fought it. And I saw our friend and former neighbour at the pharmacy while picking up meds today. As a teen they lived next door with their mama when we first moved here. The mama passed a few years ago from cancer, but they always ask about Ollie and reminded me today that the ache of losing someone you love to cancer never really goes away. It just becomes your new normal after cancer. 

With the help of CHEO staff and to honour Ollie's journey and this anniversary, we did a little thing at CHEO where we sent some treats and a message of hope to 4 North. It's a little way that we are paying your love and support from this journey forward. I'd just like to thank Jenn at Sew Happy Masks for helping us do an homage to Llama Llama Blue Pajamas and to her cousin Natalie for the CHEO cookies, as well as Ray and the team at Gabriel Pizza for feeding the staff and sending some Ollie's Pizza love for all families currently admitted in oncology. Ollie got to be the tester of all goodies. LOL

Thankfully after a year of hell, our boy was blessed with survival and aside from a bit of an off day today, he's doing great. He still has a long road ahead. Next week a respiratory test and in a few weeks another MRI, specifically in his hip where he has reduced bone density from treatments and prolonged use of high dose steroids. His whole life from now on he'll always be followed for side effects of his treatments and possible relapse or secondary cancers. 

It's this that keeps me from feeling completely happy and victorious. Will we ever be completely happy and carefree again with this always looming in the background?! Unlikely, but we're sure going to try. Ollie's happily ever after depends on it. He says he is the same even blind, but he's not the same post-cancer. He's a more cautious, thoughtful, less carefree and fearless boy than he was a year ago. We're all forever changed. How could we not be?! 

I know many of you have also told me his journey has changed you in some positive way or that he's inspired you. That's what has made it all bearable...that he has helped others, even as he suffered things a child should never have to. And that you hung in there with us a whole year, even when we know it was sometimes hard to read about our agony. Our adopted family motto extends to all of you, "We fight as one!" and now we all have to fight to be happy, despite cancer, COVID-19 or anything else threatening our happiness. It's too precious to give up easily.

I'm not done blogging yet. I feel that so little is shared about the post-treatment period and yet, so far from a mental health perspective, so much happens in it. Maybe I won't be able to stop blogging until I write that book so many of you are telling me to write...either way, Thanks for sticking with us. Big love to all of you!

Cancer and Contentment

Our family has long prioritized being together and having fun experiences over a big, perfect home and expensive lessons, sports participation, etc. While there are many days that I long for a perfectly organized and pristine home, I wouldn't trade our often chaotic home and time together for it. It's especially true right now, when we're home a lot and could be finishing so many home projects at the expense of missing precious time together. These last 7 months have again and again reminded us that nothing is more important than just being content together.

So we've been splashing and playing together in our giant kiddie pool, having water gun fights, Beyblade tournaments, board game nights and anything that amuses us and brings joy.

It takes me back to my own childhood when we always had a pool. First when my parents were still together, an above ground pool until I was Ollie's age and later as a teenager when my mom and stepdad put an in ground pool in. 

Abby has been having a lot of virtual playdates online and dug out her sewing machine to make some Barbie clothes with her friend Emma (with thanks to Magda-Lena for giving virtual advice).

Ollie has been doing so well with the walker and his virtual physiotherapy sessions. He worked especially hard this week for a reward. I offered him a toy and the little devil negotiated cash instead! 😄 Whatever keeps him working hard!

Abby has been so wonderful with Ollie and so patient in helping him to have fun, even if we have to modify how we normally do things to make that happen for him. I am so proud of the young woman she is becoming. 

She made a decision about where she wants to go to middle school. We have a dear friend who teaches there and she offered to connect us with the administrators to ensure that Abby is well-supported next year given our family's situation. I then got the loveliest messages from the school's resource teacher and the principal, so we are very grateful to know that Abby will continue to have caring educators around her when we cannot be with her.

In the meantime, Abby remains stressed at the idea of being physically close to those outside of our family as she fears that one of us will become sick and infect Ollie. Everyone must make the best decision that they can for themselves as Ontario continues to open up further, but we know too well the extra danger our family is in, so we'll have to continue to be extra careful as we wait and see what happens regarding COVID-19 cases. So Abby is working with the social worker to deal with her fears and we are limiting our contact as much as possible both for safety and to ease her fears.

On Tuesday we were at CHEO for the weekly bloodwork and dressing change. At the last minute, our oncologist was able to get us an appointment with Dr. O'Connor in Opthomology to check out Ollie's eyes and optic nerve. Thankfully Ollie has had no further eye pain, but has had dry eyes and discharge (which are also side effects of brain radiation), so we wanted to get that checked out.

The doctor had a beautiful bedside manner with Ollie, telling him each thing he was going to do before doing it, so Ollie was comfortable and calm. He looked at his eyes, did a dry eye test to verify if that's all it was (which appears to be the case) and told us things look as he would expect them to at this point. He gave us steroid drops if he has any further eye pain. He said he can still see that parts of the optic nerve are pale indicating damage and it makes sense that he would see light intermittently. 

Ultimately they're pretty certain now that Ollie will remain blind, or will be significantly visually impaired if he recovers any ability to see colour, light or shapes/forms. Honestly we're all okay with this. We've made our peace with it and are focused on kicking the cancer out. When you are fighting to save your child's life, his sight is so secondary in the big scheme of things. 

He's accepted it and only feels bad about it when others say it might still come back around him. He told me he feels like when they say that they will think he is less able because he can't see, but he CAN see now with his hands and his ears and even with his sense of smell. We've told him he can do anything he sets his mind to and he has. He's a smart kid and he knows what the doctors have said. HE has lived in darkness for 5 months and adapted. Now everyone else around him needs to.

On Wednesday Ollie and I did a radio interview with Sam Laprade on her Special Coverage of COVID-19 show on 1310 News. She's been following our blog and for National Blood Donor Week, she wanted to profile Ollie's need for blood products. Ollie completely stole the show and I was so proud of him and Sam was thrilled. You can listen to our interview here (we are on just after the 37 minute mark).

In the interest of moving forward, we had our first virtual lesson in Braille on Thursday with Leona from the Canadian National Institute for the Blind (CNIB). 

She had Ollie use half of an egg carton and 6 ping pong balls as well as a die to learn the dot system for Braille. She made a game out of it and naturally, Ollie won. 🏆 Next week we'll learn how to start putting the dots together to make letters. 

We've applied for a Buddy Dog through the CNIB which prepares kids to eventually have a guide dog. The Buddy Dogs are trained at the CNIB's facility in Carleton Place and help kids to get comfortable with dogs and starting to use them as their eyes. There's a waiting list, so it'll likely be a while, which is good as we want to get that stem cell transplant first. Most importantly Ollie is thrilled about the idea and it is really motivating him to embrace his blindness and learn to do things independently so that he can get the service dog.

We also got a call that afternoon from the Vision Itinerant team at the Ottawa Carleton District School Board. The Ottawa Catholic School Board (OCSB) contracts the OCDSB's team to provide services to blind and visually impaired kids like Ollie. The CNIB helped us to make contact so we can start the ball rolling on getting resources and an itinerant teacher for Ollie beginning this fall. He'd still have his regular teacher in his regular class at his current school, but he'd also have an itinerant teacher to help him with Braille and assistance in the class for 50% of the day and an educational assistant for the rest of the day. The Board will provide him with technology and all resources that he'll need for school and home. The best part is that Ollie's rights under the Charter of Rights and Freedoms are guaranteed as he cannot get an education without this accommodation, so they cannot be cut or taken away. 

I have never been so grateful to be Canadian. No medical bills and my special needs child will still get resources and an excellent education without us needing to send him to a special school.

Also on Thursday our friends the Navas stopped by to drop something off and it turned into an impromptu socially distanced water gun fight. Ollie was so thrilled and was really good at using his ears as his eyes. Each time the girls squealed he easily pinpointed their location and hit them again. He was so mischievous and gleeful that it made everyone happy. 

Thursday was also my birthday, so as usual I spent it with my beautiful family who all made it special. Ollie made me some jewellery with a bit of help from his sister. Abby bought me things with her own allowance money this year and was way too generous. My favorite of her gifts was a beautiful little book that she filled in all about me. It made me tear up. 

Mario also bought me lovely gifts, aided heavily by Abby who insisted on running the show this year. 

Between them and dear friends who dropped little thoughtful gifts by and the many calls and messages that I got yesterday, it was a beautiful day and I was so grateful for the love and good wishes. Pretty sure you all know what I wished for...

Today was another good day with a chat online with his friend Henry and a Google Meet with his class where he was thrilled to answer their questions about his treatments and to share his latest news. He then played Beyblades with Daddy on the deck for a while. 

We got ice cream cones later and had corn on the cob with dinner on the deck (at Ollie's request despite how cool it was), could the day have been any better?!

Friend-therapy

Had a lovely night out with some wonderful women who I am grateful to call friends. 

I will write more soon about our tests today.

Thanks to all for your friendship and love.

Acceptance, Bumpy heads and Emotional Hangovers

The thing I love best about our boy is his ability to put bad stuff behind him and keep going forward. He is always very apologetic and contrite after having a temper tantrum or being unkind or difficult. Many of his teachers have told us how unusual it is for one so young to even be aware of the impacts of his actions on others. This is what makes him normally so kind-hearted and empathetic. 

So after difficulties yesterday, he was apologetic, loving and kind today. It has been a quiet day just watching movies. His fever is still intermittent, but the huge issue is his low neutrophils. These are white blood cells that help to fight infections. If those don't go up, even if we get rid of the current infection, he'll be even more susceptible to the next one and we'll land right back in here. So we're waiting and hoping. 

And I am coaching Ollie to be prepared if we can't go home tomorrow and need to stay longer. The goal is to get well and hopefully be home for Christmas.

I can tell the coaching, change management and too a degree desensitization is working, because today the doctor suggested if his levels aren't up tomorrow we could try a medicine by injection that could raise them. A few weeks ago Ollie would have immediately started fighting the idea and had a massive melt down over the idea of another poke. Today he simply said, "If it gets me home faster, I don't care...I'll do it." Dr. Pinto was shocked and told him how proud she was of him and noted how far he's come in such a short time (because weeks ago four of us had to hold him down to get a poke).

He also started losing his hair more obviously today. He was pretty okay with it, other than the fact that it made his neck itchy. Mario has been growing his hair to shave it off when Ollie is ready. So I guess we'll soon see if the Acosta men have bumpy heads or not. Of course Ollie laughs and says daddy is already almost bald so it won't be much different for him. Just another cancer milestone we're going to pass through on this journey. 

I have a headache today and feel like maybe it's an emotional hangover from yesterday. Hopefully tomorrow will be better. 

I was also feeling a bit, "why us?!" today until I saw this in the kitchen, reminding me that so many of us have to bear it and do survive it.

On the home front we are grateful to dear friends who kept Abby overnight last night, and took her shopping today and to another who was at our house today to oversee duct work cleaning and kindly folded laundry. Many others checked in with me over the last two days to be sure we were doing okay, offered to run things to the hospital and dropped off special treats. Every little gesture and kindness is acknowledged and appreciated. 

We'll keep you posted on his progress, but are going to bed early now in hopes that we're both much better tomorrow. Sleep well!

Family, Food and Fantastic Beasts

 Ollie and Mommy snuggling...

Saturday was tougher than we expected because Ollie had extra meds that he was supposed to take orally and hated the taste, so his gag reflux kept kicking in and he threw up multiple times. His nurse, Nelson was awesome and kept trying to find creative new ways to help him get them down. 

Mario and Abby came to visit and we spent some time in the Sens Den together having dinner and watching a movie. Then Daddy stayed with him so Mommy could have time with Abby. Ollie cried when we left, desperately wanting to go home and I hugged him as he cried in real sadness for the first time on this journey. So hard, but Daddy soon teased him into a better mood and gave him snuggles. 

Chilling out in the Sens Den watching a movie.

Abby and I went to Indigo and shopped a little, but mostly thought of Ollie and ended up buying only things to make him happy. We got a Starbucks drink and headed home to snuggle, watch tv and do facial masks together. 

Today we had many things to do including shipping some Christmas packages with presents previously bought, buying jeans for Abby who seems to have had a growth spurt during all of this and picking up Abuelita (Mario's mom) to go for a visit to the hospital.

Daddy and Abby

We also had extended family Kevin (Mario's Little Brother from our days volunteering at Big Brothers Big Sisters Ottawa) and his mom, Barbara come to visit. Ollie was happy and his usual energetic and silly self. They almost couldn't believe he has cancer. 

Barbara, Kevin and Ollie

We had brought leftovers from meals that were kindly brought to the house for us over the last few days and were happy to share it with this great little group of family. We are so grateful for the many amazing people who are feeding us and it's clear they're trying to keep us all pleasantly plump based on how much food keeps coming. Ollie was thrilled with the gathering and it felt more normal than having another meal in his hospital room. We also decorated his room a bit for Christmas (although we expect to be home December 10) and started his Advent calendar.

 Abby's decorating...

It has become obvious that striking the right balance between our children's needs is going to be challenging over the coming months. Both need each of us to comfort and reassure them that everything will be okay. Ollie clearly loves his daddy, but missed me last night because today he just kept asking for hugs, wanting to sit or snuggle with me and thanking me for all I am doing for him while apologizing if he's been mean to me lately. Just an example of the sensitive and sweet boy that we have been blessed with. I pray that this experience makes him grateful for the kindness of others and for all of the good that he will have in his life after all of this. We're talking a lot about how powerful our minds and positive thinking are and their importance to us being successful in kicking lymphoma out and he seems to finally be coming around to this idea.