The Official End of Treatment

[Photo Description: A masked Ollie and Dawn pose on the first floor of CHEO under a street sign that reads, "Memory Lane".]

Yesterday was our last of three years post stem cell transplant regular oncology checkups and bloodwork at CHEO. How naive was I when I thought we'd be done with cancer in 8 months of treatment maximum?! 😆 It's been almost 4 years since we started at CHEO!

On October 22, 2019 we started our medical journey at CHEO when we arrived for our first tests, so today we took a little trip down memory lane. 

[Photo Description: Ollie, Micah, Isaiah and Theo sit in the lab waiting room talking and watching tablets.]

We started at the lab where we bumped into friends Paula and her boys Isaiah, Micah, and Theo who were also waiting for bloodwork. They were one of the many amazing families who helped during our battle. How fitting that we had a reminder of the army that helped us over the past 4 years.

Also fitting that while in the unusually long line waiting at the lab, CHEO's fearless leader, Alex Munter came along, said hi and set about trying to find out why the line up was not moving faster and updating us soon after. A simple example of the leadership at CHEO that has kept things moving for us even during the difficulties of the pandemic. In February 2020 Alex came to Ollie's hospital room after the story about his missing stuffed llama went viral. At that time Alex told Ollie if he needed anything to let him know. Needless to say, Ollie and I have taken him seriously and never been shy to ask for the things we think can make things easier for families like ours. In turn Alex has always considered every request or suggestion and done what he could to help. So in keeping with his action-oriented approach, he followed up tonight by email, asking our opinion on some other possibilities to make the lab easier and more efficient for families. How lucky are we to be able to influence even better care for CHEO families?!

[Photo Description: Ollie wears his CHEO shirt, shorts and a mask and poses in front of a mural of children playing in a tree with the word CHEO in a cloud above. Ollie is giving two thumbs up and holds his cane in the crook of his arm.]

After Alex left and we waited with our friends for a while, I did have to go into the lab reception area and advocate to be accelerated so that Ollie's bloodwork would make it into the courier by 2 pm to head to Germany for his final inclusion in Dr. Woessman's Anaplastic Large Cell Lymphoma relapse research and be tested one last time to determine if there is any Minimal Disseminated Disease (MDD). It has been negative (or clear) every single time we've done it the past few years. This has given me significant comfort in concert with his scans, even though the test is not yet widely used for lymphomas. 

They did accelerate us to make the courier and Ollie was a complete champ. We did it so quickly that we forgot to ask for the freezing spray that numbs his arm before the poke and he didn't even make a peep and only mentioned it after we were done, saying his arm was a little sore. From a boy at least 3 of us had to hold down 4 years ago as he kicked and screamed during pokes even with freezing spray, to this calm and capable of handling anything boy. What a transformation.

[Photo Description: A photo of posters in English and French found on the reception desk in the CHEO Medical Day Unit promoting the Patient and Family Advisory Council (PFAC) and Campfire Circle Family Picnic for oncology families. This is one of the many initiatives that the Oncology PFAC that I am a member of has organized to connect with and make cancer care easier for new families.]

On to oncology where we had a final checkup and they told me this was really it...that there would be a check in once a year, but no scanning unless there were symptoms and they were a phone call or an email away, but didn't need to see us again unless we really needed them. I admit I got teary and a little fear gripped my heart all of a sudden. I've felt somewhat this way each time we reached a new milestone where we'd reduce the frequency of visits, but this was really the last one. They consider him to be well and completely stable and no longer in need of them. After my panic and tears I used my best Kids Kicking Cancer Canada power breathing to help the panic pass. We gave big (masked) hugs to our post transplant clinic Nurse Julie who has taken amazing care of us the past two years, and helped me through more moments of panic than I could count simply by responding quickly and getting us access to whatever we needed to keep him well. She is one of the most responsive health care practitioners I've ever met and she has been such a blessing to us.

[Photo Description: Ollie eats a sub at the Oasis Cafe at CHEO]

From there we had one more of the likely hundreds of subs that we've eaten at the cafe. For whatever reason the food even tasted better today than it usually does.

[Photo Description: Ollie lies on the table and is connected to 13 wires for his routine EKG in cardiology.]

On to cardiology for EKG and Echocardiogram  and I laughed out loud remembering them trying to get Ollie's hospital bed down that corridor after relapsing in his brain. I did not imagine then ever being able to laugh about anything that happened to us during that awful time. Time and doing the emotional work really does heal wounds (as my therapist reminds me).

[Photo Description: Ollie lies on the table for his Echocardiogram as the technician's gloved hand can be seen using the probe during his test.]

Next we popped up to 4 North to say welcome back from mat leave and goodbye to our angel on earth, Dr. Abbott. Our other oncologist angel, Dr. Brianna Empringham is also on mat leave right now. After a short visit, big hugs with Dr. Abbot for Ollie and I. She marveled at how tall and lean Ollie was since she last saw him a year ago (he's lost 22 pounds since stopping the Lorlatinib a year ago and built a lot of muscle playing all of the sports he plays, plus he's still in the 97th percentile for height for his age). She told me I was a great hugger. I could hug her forever and never let go after all she's done for our family. LOL Grateful to have also seen a bunch of our incredible nurses, our favourite pharmacist and one of our child life specialists, too.  

We were too busy hugging our team in MDU and 4 North  to take pics! And as they all reminded us, we'll see them in October at the SIOP international oncology conference that CHEO is hosting and Ollie and I are speaking at on patient-centred care. I teased Dr. Abbott that they asked us because I was clearly not afraid to ask for what we needed. Dr. Abbott told me that I always asked in the nicest and most respectful, yet assertive way, and she thought I should be teaching a class to all little girls so that they'd all get what they needed as they grew up. As an outspoken person who has often been concerned that she is seen as too loud or brash, I was flattered that she saw me that way. She's done everything I asked and more for 4 years. Not once did she ever say no to any of my ideas or make me feel like I wasn't an equal partner in Ollie's care team. She always left us in good hands when she couldn't be with us and doesn't take any credit for her leadership in helping him to survive. She could ask virtually anything of me and I'd do it for her in a heartbeat, no questions asked. She thanked us for the visit, wished Ollie a good start to his school year next week and promised she'd see us in October at SIOP.

Next was the requisite visit to the gift shop. And for once my brave boy left empty handed because he already had all of the Lego sets that he wanted and couldn't rationalize me spending $8 on the world's tiniest harmonica that he'd admired. So he picked a CHEO shirt for daddy to match the one he himself already had and left happily. He's maturing so nicely and better understanding that while it's nice to have things, what matters most is having the best people in your life. 

We had one final stop before we could leave. Ollie indulged me and went along with going back to the CHEO playground we'd stumbled upon on our very first day at CHEO during testing before diagnosis on October 22, 2019. 

The playground is located behind the main building of CHEO, near the Children's Treatment Centre and Roger Neilson House. 

[Photo Description: A split photo. In the left is a photo of 7-year old Ollie hanging down headfirst and making a crazy face from the top of the playground slide at CHEO on his first day at CHEO for testing on October 22, 2019. The second image is of Ollie standing in front of the same slide with two thumbs up and holding his mobility cane on his last official day of oncology and post transplant treatment, August 28, 2023.] 

On that day almost 4 years ago we had zero idea of how much our lives were about to change nor how important CHEO and everyone who worked there would become to us. The 7-year old kid on the left of the photo above (who was not evidently sick or short of energy when diagnosed with stage 3 cancer) was ready to dive headfirst down the slide like the crazy brave kid he always was and used this bravery every one of the last 1,406 days since we started at CHEO. The courageous kid was more subdued this visit and opted to just pose in front of the playground instead of playing on it. A sign of his newfound maturity as he becomes a tween and is slowly moving away from what is left of his complicated childhood.

[Photo Description: A split photo. On the top is a selfie of Ollie and Dawn smiling while sitting on the wooden swing in the Little Garden on October 22, 2019. On the bottom is a photo a passerby took of Ollie and Dawn posing in the same garden beside the Celebration Bell on August 28, 2023.]

Finally, we reached our ultimate destination in CHEO's Little Garden located in the little forested area behind the playground. 

The bell was first rung by Hillary McKibbin to mark her remission of her Aplastic Anemia. Due to the threat of COVID and her being severely immuno-compromised, her family needed a bell that she could ring outside safely, so her incredible mama Kelly McKibbin built one and later donated it to CHEO so that ALL families could celebrate and mark milestones. 

[Photo Description: Ollie holds the string of the Celebration Bell in the CHEO Little Garden, readying to ring it to mark his last official day of oncology and post transplant treatment.]

I met Hillary's mom Kelly online just a few months before Ollie was diagnosed. I'd seen Hillary's story and plea for stem cell donors in the news and her story called out to me and touched me in ways I didn't understand then. I felt called to follow her journey and connect in empathy with her brave mama. Kelly and I had corresponded from time to time for months via Twitter private messages as I sent her encouragement and marveled at their bravery in telling their story so honestly and publicly. When Ollie was diagnosed, Kelly was actually among the first people that I told and we were both shocked that we were suddenly living such similar lives. I believe it was divine intervention that brought us together and we supported each other throughout the pandemic as we both put everything we were into getting our children well, keeping them safe, and encouraging others to donate blood products for kids like ours. 

[Photo Description: A photo of one of the gold plaques with black writing on the purple post of the bell that reads, "Celebration Bell: This community bell is for all families to enjoy. Ring it to commemorate a milestone, a recovery, or an achievement that brings you joy." The text is also translated into French and the CHEO Foundation logo is on the bottom.]

When we found the bell I read every word aloud to Ollie and got choked up as I read these words to him. Today we celebrated the milestone of being done our final of three years of regular oncology checkups, officially being off treatment, fully recovering from his cancer and stem cell transplant, and this was certainly an achievement that brought us joy. And we were marking the occasion on Hillary's bell. I couldn't imagine a more perfect way to end our last official day at CHEO.

We finally made good on our promise to our friend Hillary that we'd one day find her bell and ring it, too. So here we both are ringing the Celebration Bell. We rang the heck out of that bell (but don't worry it's still perfect and ready for many many more celebrations for other families!)!

[Photo Description: The commemorative plaque on the post of the bell that thanks all who contributed to the bell's creation.]

Now realistically, cancer survivors don't ever get to be done with their medical journey. While Ollie is officially done in oncology, he continues to be seen twice a year by endocrinology and his bone specialist for his hypothyroidism and osteopenia. He'll still visit opthamology and his retina specialist at least annually. As big things happen in his life and he transitions through different growth stages where he may be triggered by all that he's survived, we'll still see the social workers or child psychologists when needed. He has a pulmonary function test in September to ensure his lungs are still healthy. Still a lot, but so much less than our normal of the past 4 years. 

And I'm still on the Oncology Patient and Family Advisory Council (PFAC), a Family Leader for the CHEO Research Institute, and a member of the CHEO Inclusion, Diversity, Equity, and Accessibility (IDEA) Committee, so I'll still be part of the active CHEO family. And I'm still a Co-Lead of the Education and Training Matrix for the Canadian Pediatric Cancer Consortium, so am committed to continuing to help make things easier for families at all pediatric cancer centres across the country.

Ollie was randomly emotional yesterday, too. Maybe in part because he felt mine, but there were lots of extra hugs from him and requested by him throughout the day. One day he'll truly understand how his army wouldn't give up on him and saved his life multiple times. He is one of their many successes and miracles.

I feel sad AND happy, AND fearful AND hopeful about reaching this milestone and the ending of a huge part of our lives. We remain so grateful every day for the unbelievable people at CHEO who have helped us to survive so much. They truly treat the whole family and make you feel part of theirs. 

I think the Buddhist Proverb below sums up pretty well how I feel right now. Stay tuned to hear more as we get started on our next new beginning.

[Photo Description: A quote that reads, "In each loss there is a gain, as in every gain there is a loss, and with each ending comes a new beginning. - Buddhist Proverb"]

Scan and Biopsy Results

[Photo description: Ollie found the free popsicle stash in CHEO's Medical Day Unit (MDU) oncology clinic while waiting between scans and cheekily kept asking if his tongue was blue!]

It was a really long 3 weeks waiting for biopsy results, but in our usual way we found that keeping busy and letting go while letting God worry about it all is best. Thankfully we had plenty of distractions to keep us busy.

[Photo Description: Four of the senior grade classes and some of their parents attend the first in-person school mass at St. George's Parish since the pandemic began in March 2020.]

We've all prayed an awful lot the past few weeks and have heard from so many of you saying that you were praying with and for us, too. It means the world to us to have our incredible army still here sending us light and faith. As it happens we also recently had our first opportunity to actually set foot in our parish for the first time since Abby's confirmation in February 2020. 

Just after Easter and the week after his biopsy, we got a message at home saying that Ollie's was one of four classes attending mass in person and parents of those classes were welcome to come or watch online with the rest of the school. Given Ollie's osteoporosis in his back and hip makes it too hard for him to walk all the way (it's 1.4 km each way from the school and back), his Vision Itinerant teacher had me drive him and met us there. Most students were still masked, all teachers were still masked and Ollie never takes his off, so we felt relatively comfortable doing this. 

[Photo Description: Ollie is in the grey jacket in front of his Vision Itinerant teacher and sitting with his classmates and dear friends during his school's mass.] 

It was both a joy and pretty emotional for me to be back given the last time he had just relapsed in his brain and our journey stretched further ahead of us than behind us like now. Ollie was very reverent and asked to stay and pray a bit extra at the end. I knew he was praying that he was still well and for so many of our CHEO friends who are still fighting. When I drove him back to school he seemed upset and upon further discussion I learned that he'd felt left out that he couldn't yet get communion like his friends. He did his Reconciliation recently, but we're still prepping for First Communion and hope to schedule it before the end of the school year. Yet another reminder of how much he's missed these past 2.5 years, but we're almost caught up!

[Photo Description: Ollie has a blast using Nurse Julie's scanner during his routine CHEO oncology appointment for bloodwork and check up. Julie is incredible with the kids and was wearing a Batman shirt with cape. She laughingly said it was great to work in a place where any day is dress up day!]

We had his routine visit with CHEO Oncology the following Monday. Bloodwork looked good other than slightly higher levels for his liver function (not super concerning and likely attributable to a change in the disagree of his Lorlatinib to 75 mg a few weeks before) and Dr. Abbott looked at the remaining bumps and the stitches from his biopsy and commented that she could see why I had been concerned and felt it was good that we biopsied. She said she would push for results sooner than the 2-3 weeks dermatology had quoted, but knew that all departments across hospital were short-staffed due to COVID.

[Photo Description: Dawn holds up her favourite snacks after donating blood at Canadian Blood Services recently.]

Later that week I went with my "blood buddy" Marie-France to make my 9th blood donation at Canadian Blood Services. It is our ritual now that every 84 days we give blood in Ollie's honour to pay it forward to other families trying to survive what we have. Each and every time I feel grateful to every single selfless person who gave to save my child and know that mine is saving someone's child, too. In just a few weeks I'll pass two milestones...my tenth donation and two solid years of donating every time I have been able (my hemoglobin was too low one time, but otherwise I have given every 84 days). I started when we were waiting for Ollie to get back into remission and I knew that the pandemic was causing dangerously low levels of donations. They told me before his transplant that they couldn't guarantee that there would be blood available if he needed it and I told them just to hook me up and give all of mine to him. I knew they wouldn't do that for real, so I decided to start getting it into the blood bank myself and to try to get more people to help me. 

[Photo Description: A screen capture of Dawn's GiveBlood App showing that so far 16 donations have been made by members of the "Donate for Ollie & Abby" team.]

Given so many people in this province have been sick with COVID in recent months and not donating, there is once again a 25% shortage in the reserve of blood. If you are able or have never tried it but are willing, I encourage you to donate. It's so easy, takes less than an hour and honestly there are so many like Ollie whose lives depend on it being there when they need it. You can even join our team, "Donate for Ollie and Abby" through the "Partners" section of the Give Blood app or when you are online scheduling your donation. 

[Photo description: Ollie washes the van using a power sprayer.]

Ollie enjoyed the recent super warm weather by helping mama wash the van at a DIY car wash. He'd never done it sighted before he went blind and was so excited to hold the pressure washer and feel its power. The entire time he yelled, "Woohoo!" and laughed his head off. Worst actual wash van ever had, but best time doing it!

[Photo Description: Ollie sits on the deck at a table playing Tech Deck finger skateboarding.]

He's also gotten out more with the nice weather, but we are always careful to diligently use sunscreen, have him wear a hat and sit in the shade whenever possible as having had chemo, radiation and a transplant he is more susceptible to getting skin cancer and sadly he also has a Vedic pre-disposition to it as it runs in my family, too. In fact recently I had a sun spot removed by a GP Specialist in Dermatology just in case. After all of this you are so much more aware of every little unusual mark on your body and want to be diligent to get it checked early. 

[Photo Description: Abby's birthday donuts from Suzy Q's that read Happy Birthday.]

Abby's 14th birthday happened recently. Now that she is older they don't really do "parties", but simply hang out, marking the day with simple-gifts and lots of candy it seems. She was happy with that, so while I mourn the loss of her last real years of kid parties, she had a lovely day and was satisfied. 

[Photo description: Abby and Dawn having pedicures at a local spa for Mother's Day/Abby's birthday.]

Abby's birthday fell on Mother's Day this year as it often does, so she and I went for mother daughter pedicures to mark the social day for both of us.

[Photo Description: At CHEO on scans day Ollie holds a cup of orange flavored contrast with a straw in it as he sticks out his tongue making a grossed out face.]

Ollie's scans went well, but it was a long day at CHEO from 9 am arrival to begin driving the contrast and appointments all day until 5 pm. Fighting cancer even when in remission is definitely way harder than any job I've ever done. 

[Photo Description: Ollie spouses his eyes and braces for the buses to remove the first stitches from his shoulder where the biopsies were.]

The hardest part of the day for him ended up being the removal of his biopsy stitches. I had asked at the last minute if someone in the Medical Day Unit (MDU oncology clinic) could possible remove them as they were really bugging him and we didn't have an appointment to see dermatology to remove them until the following week which would be four weeks with them in and they should have been removed after two. Apparently they are using non-dissolving stitches due to supply issues, so one more side effect of COVID and further strain on our hardworking nurses. Kind nurses in the dialysis unit attached to MDU made time to do this for him. Unfortunately it was very stressful and apparently painful for him as the stitches were pretty entrenched by then. With lots of Kids Kicking Cancer power breathing and mama coaching him, he got through it, but there were a lot of tears from a kid who's pretty tough. 

[Photo Description: Ollie lying on the CT bed with his arms reading on a wedge above his head and his hands holding a small stuffed koala bear given to him during treatment by his friends Henry and Dylan. The IV with a coiled cord to the contrast to be injected is in his right arm.]

Although he doesn't like the contrast he's now a complete pro at both drinking the contrast and the injected kind, so had no problem with the insertion of his IV nor drinking a cup of contrast every 30 minutes for 3 hours! 

[Photo Description: Ollie poses with Quickly Koala  while waiting for his next scans in Nuclear Imaging at CHEO. His right arm is covered to protect his IV.]

Before scans and while drinking contrast we had scheduled an in person visit with his child psychologist in MDU and it was a pleasure to finally meet her in person after 10 months of seeing her exclusively online. 

The rest of the time we hung out in MDU's playroom doing crafts with wicki sticks and visiting with MDU staff who happened by. One child life specialist came over to say help and reminded us that she had been a student doing a placement at CHEO in oncology when Ollie was first diagnosed and now works there! She was so pleased to see that he was doing well. Unbelievable that it's now been 2 and a half years since this all began! 

[Photo description: Ollie getting ready to do a drop in at The Yard on his skateboard while instructor Jordan holds his hands until he is ready.]

Ollie missed one week or skateboarding due to the biopsy, but was insistent he was ready to go back the second week. He's progressed so much this year that it's amazing. To see some videos, go check out his Instagram account (cnib_ollies_hope)! Also our episode of AMI-TV's "We Are One" telling Ollie's story and how we all adapted to his blindness airs June 2nd at 8:30 pm. You'll see Ollie starting his skateboarding last fall and be able to compare how he's progressed! Here is the trailer. 

[Photo description: Hope sits on the kitchen wearing her and Ollie's CNIB Pup Crawl bib. Our new LG  SMART stove that can be voice activated and run from an accessible SMART phone so that Ollie can use it in future sits behind her.]

Ollie and Hope are also participating in the CNIB Pup Crawl again this year in memory of his friend Mason's Buddy Dog Queenie who became ill this year and had to unfortunately cross the rainbow bridge long before her time. 

In other developments, our old stove died and was going to cost almost as much as a new one to repair, so we had to get a new one. This is also part of Ollie's story now because we took the opportunity to research and buy a me LG SMART range. This is so that in future as Ollie agrees he will be able to use the active himself because the oven is voice activated with Google Home or Amazon Alexa and you can run it from your SMART phone which one day he'll also have. Since a stove lasts 10-15 years it made sense for us to do this for him to ensure accessibility. Just one more example of what we are learning about how to help him have an accessible life.

[Photo description: Cover of the children's book, "Ollie's Telescope" written by Samantha Smadella and illustrated by Kaitlyn Blanchard, showing a drawing of a bald Ollie standing on a black planet with a black dog beside him looking out into a multicolored universe with many stars and other planets.]

In other exciting news, two sweet Algonquin College Therapeutic Recreation students have written a book based on Ollie's story with cameos of other actual CHEO oncology patients, too. It was their end of the year project and they decided to self publish the book and give all proceeds to Candlighters Childhood Cancer Support Programs. You can pre-order yours here on Sam's Therapeutic Recreation website! 

The story is about Ollie who loves astronomy (creative license taken here so the story arc works better), gets cancer and loses his vision, learns through a therapeutic recreation specialist in hospital that he can still enjoy stars because each has a unique sound, then meets another boy at hospital who used to love skateboarding, but is now wheelchair bound because of his cancer. The boys trade telescope for skateboard so each can learn a new passion that they can still enjoy thanks to accessibility options. Hope makes a cameo in the book (and is on the cover), as does a brave CHEO kid named Sophia who is now a star in the heavens. This book is so positive and deals with cancer effects and death in the most beautiful ways. We are grateful to Sam (whom we met through the Snow Angels for CHEO Campaign this year) and Kaitlyn for their interest in Ollie's story, for making the kids in the story the brave, unstoppable heroes that they really are and for their generosity in donating all proceeds to help other kids like them who are still fighting. 

[Photo description: Ollie celebrates clear scans by viewing out a candle in a brownie.]

Two days after Ollie's scans our amazing oncologist Dr. Lesleigh Abbott called me to report on the scans. I was in the car running errands and as I held my breath she began with, "He's stable with no evidence of disease." Huge breath released. She's so used to this that she even waited for me to breathe before continuing. How difficult her job is when she has to deliver the bad news! I've been there with her and was so grateful for her compassion then, too. 

She also configured that she'd talked to dermatology and pathology about the biopsy results and they were certain that it was NOT any form of cancer or infectious disease. She did say they were still running a few tests to see if they could pinpoint what the spots actually are and they would follow up with us.

She then explained that what minor change there was in his scans just confirmed that they are now identifying his hip deterioration as Avascular Necrosis (AVN), which means that bone tissue is dying due to lack of blood flow. There are various treatments for this and it's not much worse, but we'll know more when we see the bone specialist in June. Also, they can see that his left eye that is still awaiting surgery thanks to the COVID backlog is experiencing more bleeding. So we've sent that off to his opthamalogist and I verified this week that it's been sent to his Retina specialist and next week I begin being more of the "squeaky wheel" to push for the surgery like I did before Christmas for the first. Otherwise all stable in his scans. Praise God for prayers answers once again and our incredible gratitude to all of you who sent us prayers and positivity! We are infinitely blessed.

[Photo description: Ollie lies on the bed of the bone density scanner at CHEO.]

Yesterday we were back at CHEO for bone density scans and xrays for the bone specialist and endocrinologist to take a closer look at in the coming weeks. 

We also had an appointment with Dermatology to follow up on their biopsy findings. They are fairly certain that the spots are leiomyoma.

"A leiomyoma, also known as a fibroid, is a benign smooth muscle tumor that very rarely becomes cancer (0.1%)."

They can be found in various places inside the body, but also on skin. They can be itchy and painful or not (his are not). If not itchy or painful they suggest not taking medication and just monitoring as it can lead to kidney disease. 

There is the genetic kind and random kind (just like cancer) and they'll do a blood test to determine if he had the genetic kind or not. They say it will be monitored through our oncology team from now on. They did say that they've checked all of the meds and treatments in his chart against it to see if there are any known causes, but came up with nothing. I inquired if there might be a correlation between it and his thinning skin in those areas thanks to prolonged use of Dexamethasone because of his relapses. They said they would check.

So just one more thing to monitor. Maybe related to the cancer and maybe not. Grateful it's not something worse, but sure wish results were always more definitive. 

Overall our results are great so we are thrilled and grateful and looking forward to the next steps. We'll share info from the bone specialist next month and tell you how we plan to celebrate his second re-birthday/anniversary of his transplant/second hero day for Abby. Until then, count your blessings, donate blood if you can and be well!

He's going to ring that bell!!!

It's late and I don't have time to write a real post, but since all of you have been following along so amazingly all year, I don't want you to miss this...

Ollie is going to ring the bell at CHEO tomorrow (Friday, November 6) at 1:15 pm EST and has asked us to live stream it so friends and family can be virtually present. Apparently you don't need an account to watch here:

https://fb.me/e/fsCiiwL2E

Recording it and will share if you can't make it.

Hometown advantage

We made it home to Ottawa Sunday afternoon after a fairly smooth ride back. With our dear friend Vic once again following us back from Toronto to make sure we had help if we needed it, we stopped a few times en route. Because of COVID-19 virtually all public restrooms are closed, so it's almost impossible to find a place to pee! Thankfully we had Ollie's trusty commode in the van and I'm not ashamed to say I used it out of necessity! I have never been so glad we bought the van with those stow and go seats where we just put one down into the floor and used that space for the commode. We also had to stop to get Mint Chip ice cream to take with some medicine, but Ollie was disappointed that it was not Merry Dairy ice cream.

We got home late afternoon after about a five and a half hour journey. Ollie did pretty well, but in the last two hours we gave him morphine as his muscles were really hurting despite extra padding, reclining a bit in his seat and trying to get him to shift positions and stretch at each stop.

When we turned into our street, a beautiful socially distanced gathering of friends was there to welcome us home with clapping, yelling, whistling, signs, groceries, gifts and so much delicious food. It was a hero's welcome for Ollie and we were so touched by it. 

Our dear friends who took care of the cats and fish decorated inside, too and coordinated with other incredible friends to stock our fridge and pantry. Others brought food for the freezer or dinner the first few nights. Over the last days we have received so many expressions of love. From spring's first tulips to our first BBQ of the season, we've had a beautiful taste of homecoming and we were so thankful.

Gifts for Ollie have arrived from friends and family, too. Anything to bring him some joy. The one below is bigger than he is and he was thrilled with it and plotting to set it up on the backyard for family Nerf wars. I love that the fact that he is blind didn't even factor into this planning as he was convinced he could shoot us all by listening and figuring out where we are. 

Within minutes of arrival at the house he had his Mint Chip from the Merry Dairy down the street and was happy when friends later brought him Funfetti too.

Monday and Tuesday were unpacking and figuring out a new rhythm kind of days. Ollie sleeps upstairs in his or our room and comes downstairs for most of the day. 

Chewbacca the cat is clearly happy we're home. Our incredible neighbours, Mike and Barbara also took care of the beasts while we were away and sent the kids daily hilarious reports of them getting into trouble. Stephen's stories of Chewy' s mischievous acts also made them laugh.

I forgot what a stress reliever our furry friends could be despite the extra work they sometimes cause.

Ollie is getting stronger by navigating the stairs with help. At night if he's too tired, Mario carries him up to bed. He's 37 kg, so it's way harder than it used to be! By morning and after sleeping he's generally feeling stronger and can go down the stairs walking slowly or on his bum with support. He and I used to go down the stairs that way together (with him on my lap) when he was tiny and I had sciatica pain and couldn't lift him. Just another example of how things are in a crazy way almost frozen in time. 

He's walking more at home and with more confidence. He's also been calmer and less angry (steroids do that to him). Coming home was the right decision to help him mentally for this next set of challenges.

Wednesday we were back at CHEO for check ins with our oncology team, the weekly central line dressing change and radiation planning.

It was also honestly like coming home being in the Medical Day Unit (MDU) with all of the nurses and doctors we know coming by to say hello or to check in because they knew we were back and would need support. Our social worker also came by as did our palliative care team (pain management). Many congratulated Ollie on having a pizza named after him. 

We met our radiologist, Dr. Chan, too. What a patient and kind woman! Ollie had been NPO (couldn't eat) since midnight as we had planned for him to do the radiation planning while sedated under general anesthesia. Ollie is on a high dose (5 mg twice a day) of Dexamethasone steroids to cool down his optic nerve and help to hold back the lymphoma in his cerebral spinal fluid. This makes him very "hangry" so he was demanding to eat and imploring all of us to let him do the radiation planning without sedation. She agreed to let him try and told him if he couldn't do it that way, we'd try again tomorrow with sedation.

He was so happy and ate so much!

He did later have doubts about doing the planning without anesthesia, but daddy and I convinced him to try and we wouldn't be mad if he couldn't do it.

So off to the General and it's cancer centre. The technicians and radiologist could not have been a more well-oiled machine. They talked Ollie through every step, encouraging him and praising him each time he did what they asked. 

They made his mask and he was great until the end when they were doing the CT and he'd had enough of the mask holding him onto the table. But he got it done. No drugs. And he was still. He never could have done that 6 months ago! 

We're coming up a plan to give Ollie some drugs to calm him but not put him to sleep for his sessions of radiation as it will make it easier so he doesn't have to be NPO every day. 

 

His new third generation ALK Inhibitors were ready at CHEO today, too. One moderate sized tablet once a day. No cost thanks to Pfizer's releasing them to us on compassionate grounds. CHEO had already done the leg work to request this drug before we left for Toronto, so I am grateful for their foresight. Ollie took the first one this afternoon with no issues.

We know of three other families (2 in UK, one in Australia) with kids with Anaplastic Large Cell Lymphoma  taking this miracle drug and getting them into remission. One of these incredible moms sent me a link to an article where a teen with an incurable tumour who had fought for years took this drug and she is now on the way to being cancer free when they never thought it would happen for her. 

So I prayed over these drugs today, begging my God to make this the miracle we need to get Ollie well, too. I have faith and hope in the powerful combination of a team we trust, a miracle medicine, targeted radiation and the strength and determination of one amazing boy. Here we go...

Wishes and Miracles

Ollie took this pic. Santa came to the CHEO Medical Day Unit (MDU) and gave me one of my wishes early this year...scroll down to hear what it was!

Ollie got to see Santa after all this year! 

Every day in MDU there is excitement. You'd think that with so many sick kids there it would be a depressing place, but there is a happy atmosphere there that defies logic. It's like you are being wrapped up in a womb, enveloped in warmth and comfort despite the cold reality that cancer forces you to face daily. If Disneyland is the happiest place on earth, MDU is the happiest place at CHEO for the same reasons. Everyone bends over backwards there to make it a positive and rewarding experience for families. 

Today it was Christmas in MDU. We were there for some blood and kidney tests. Santa was there, accompanied by Officer Amanda from the Ottawa Police Service. The Ottawa Police had provided presents wrapped and labeled (Boy 8-10, Girl 4-6, etc.) for every kid there today and they're doing it again all day Thursday. I have always had a lot of respect for the men and women who keep us safe in this city and it today it got bigger. So maybe buying cancer kids presents at Christmas is easy enough to do and send, but sending a Santa and an officer to help was classy. And the officer was awesome with the kids and treated them like normal kids. Also surprisingly unusual as a lot of adults I have come into contact with recently don't know how to treat sick kids.

Excited to open a present from Santa (courtesy of the Ottawa Police)!

Ollie got over $100 value in Lego and I was blown away at people's generosity once again. There was a lovely card that made me tear up, wishing him a healthy 2020 and that he feels better soon. 

Playing a trick on Officer Amanda of the Ottawa Police with Molly Penny's help!

Officer Amanda showing Ollie that her pink handcuffs were actually real police handcuffs and him trying to escape!

We also saw our oncologist, Dr. Pinto setup was super pleased with Ollie' s response to the chemo, noting the amazing reduction in his bump already and remedying on how terrific it was that he was still super energetic (as he bounced around the room asking a million questions and bouncing an actual ball on his hand too voraciously). She explained that although they had originally slated him to start round 2 of chemo being admitted to hospital on December 24, they discussed pushing that by a few days and given the number of others scheduled to be admitted them, decided he is strong enough to wait until December 30 to start round 2. So my Christmas wish came true and we get to be home safely with our family together and wake up Christmas morning in our own beds to see what Santa has brought. Christmas miracles do exist and we are so grateful for all of the positive energy and prayers being sent our way, so please keep them coming in the new year. 

More soon...