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"]

Back to School

It's been an eventful few weeks. The kids are back in school and settling in  after many adjustments to being back in person for the first time since the COVID-19 pandemic began. 

 Photo description: Ollie poses with a big smile while holding his white cane on our front porch with his backpack at his feet on his first day of school for 2021-2022.

Ollie was so excited about going back that he woke up at 5:30 am the first day! As I snuggled in his bed with him hoping he'd go back to sleep for at least an hour, he talked to me softly. "Mom?", he said sweetly. "You don't have to worry about me today or be sad that I'm going. I'm so happy that it can't be anything but a great day!" My brave boy reassuring me because he knew how hard that day was going to be for me. Don't get me wrong - I was overjoyed that he was well enough to go back to school, but as with every milestone that we hit on the path to total wellness, it was overwhelming and reminded me of how much we've had to overcome to get to this moment that at times we were uncertain would ever be possible.

Photo description: Ollie and his vision itinerant teacher and educational assistant on the first day back to school in two years since cancer, blindness and stem cell transplant. Photo courtesy of Ollie's principal.

I took him and he was vibrating with excitement. No nervousness or fear at all. As we waited for his educational assistant to meet us we saw many friends who joyfully greeted us, most knowing how momentous this day was for us. They had followed our journey and nurtured us through it with frequent food and gift drop-offs, kind messages of support, financial donations and so many prayers sent our way. I held it together until Ollie and Mrs. Taylor disappeared into the school, then turned around and tears began pouring down my cheeks almost blinding me as I stumbled back down the path to my car. 

Through my tears I saw my friend Angie who is the office manager at school and goes to church with us. We've worked on fundraisers together and over the past two years she's had her own personal challenges, but she was always so supportive of us, even personally delivering things to the house for Ollie from school. She walked towards me with her arms wide open and enveloped me in the best hug as I sobbed. We were both wearing masks and we both felt that this was far more needed in the moment than the COVID caution we usually observe. It was the best hug and I was grateful for the empathy and compassion in it as I let go of so much pent up fear and uncertainty. 

 Photo description: Ollie plays road hockey with friends at lunch recess at school with an audible ball filled with beans. Photo courtesy of his educational assistant.

I don't even care that everyone watched as I had my break down. I deserve that after everything we've been through and endured. They all understood that and stood nearby in support. Many came up to me after to offer words of support and love. How blessed we are to have such an incredible village around us helping us to raise our child! He's doing great and has settled in nicely with few bumps along the way. 

 Photo description: Ollie plays basketball with a close friend at school. Photo courtesy of his educational assistant.

On the first day of school he had a moment of feeling left out as friends went ahead and played like they normally would inadvertently leaving him behind. Fortunately his kind E.A. helped him to problem solve and they went to find someone he could play with. We reminded Ollie that he'd been sick a long time and was now blind and the kids didn't know yet what he COULD do, so he'd need to educate and show them! Since then they play road hockey with his audible hockey ball, basketball with his jingling basketball and soccer with his beeping soccer ball. I've bought every adapted piece of sports equipment there is and they're worth every penny! His friends have been amazing at learning how to accommodate him by calling out who they're passing to so he gets audio cues to follow the ball, too. His teachers tell me how much they're all learning from him about accommodation and inclusivity and how well that will serve them all as they grow up. 

 Photo description: Ollie wearing a red hoodie plays soccer at school with friends using his beeping soccer ball. Photo courtesy of his educational assistant.

During rainy day recesses his friends take turns playing chess with Ollie on his tactile chess set and he delights in teaching them the new moves he's learning. He has a weekly chess lesson from a local young man who quickly rose to the challenge of teaching a blind kid and has gotten excited researching ways to make it easier for Ollie to learn and play. 

 Photo description: Ollie's hands on his tactile chess set to which we have added a Braille grid for him to learn the rank and file positions of the board. The white pieces have a little bump on top in order to distinguish the two colours and the black squares are slightly raised to enable him to distinguish each position on the board. We have one at home and bought another to send to school. You can also play checkers on this board.

Abby didn't start school until two days later and found the transition in the first days a bit overwhelming after 18 months of not having in person daily interactions with those outside of our family. She, too, has gotten more comfortable and happier as time has passed. 

Photo description: Abby poses on our front porch wearing a mask and her backpack on her first day of school for the 2021-2022 school year.

Sending them both back was the right decision despite the risks. We are grateful to both schools and all staff who have helped to make our re-entry a positive one. So far both have been safe, although Ollie did get his first cold post transplant after the first two weeks of school. We kept him home and watched him closely for COVID symptoms. He only had a sore throat and runny nose, so fortunately not COVID symptoms without accompanying fever and cough. I also kind of obsessively checked that he could taste and smell regularly and went in when he was sleeping to check that he had no fever or laboured breathing. We knew that there had been a few cases of colds in his class and that those kids had negative COVID tests, so I just kept breathing deep and reminding myself that if nothing else we've learned to triage symptoms through cancer and not jump to the worst conclusions every time. When the worst you can imagine has already happened to you, you tend to have heightened awareness of when things are normal and when they're not. 

So we booked the first COVID test we could for a few days later just in case, but the day before his test he was bouncing back and feeling better just 4 days in. By day 5 he was back in school and I was thanking God and Abby once again for his new immune system that has now been tested and proven to work well. Naturally from the stress, I got his cold within a few days, too. It's the first illness I've had in the 2 years since his diagnosis. My therapist says that's a good sign that I've let my body relax to the point where I allow myself to get sick. That it means that at least subconsciously my body and brain know that he's no longer in the same danger and that even if I get sick it'll be okay now. I guess I have taken the armour off or at least part of it.

I have been trying to strike a balance between spending time on processing my feelings about everything and getting things important to me done these past few weeks. Each day I spend some time walking Hope, thinking and praying, organizing medical appointments for myself and Ollie and trying to knock a few things off of my lengthy to-do list. After two years, there are so many things we've not had the energy to do around the house and I hope to take care of some of them before I go back to work. 

 Photo description: CNIB Buddy Dog Hope gives Dawn the "side look" while posing for a selfie during a walk along the Ottawa River. A beautiful sunset over a bridge on the river is in the background.

Ollie has CT and MRI scans coming up tomorrow and blood tests in mid-October. These are pre-occupying my mind at present and causing my sleep to be erratic over the past few days. He shows no symptoms, but it's been too long since his last scans and scanxiety is real and hard when you're battling PTSD. This is part of the new "plan" for Ollie that his oncologist and I have puzzled out together because there is no roadmap for relapsed Anaplastic Large Cell Lymphoma. But we are trying to remedy that, too. 

To that end I was asked by Ollie's Toronto oncologist to participate in a meeting last week with a Stanford University researcher and an American oncologist who is an expert in ALCL and head of the Children's Oncology Group (COG) ALCL Committee. We discussed outreach to ALCL parents to encourage them to participate in an ALCL relapse study. It's early days and will be a longer term project, but I am proud to have been consulted and cannot help but feel that it is a good step towards collecting information that could help to standardize relapse treatments in future. I am grateful to my ALCL parent friends around the world who are also raising awareness so that together we may make a difference for other ALCL families and spare them some of the fear of not knowing how to treat this in future. This makes me feel like all of the agony that we have endured may at least result in better outcomes for kids like Ollie in future. I am grateful to play a small part in positive change.

Ollie had a consult with the retina specialist at The Ottawa Hospital a couple of weeks ago. Turns out the retina specialist is married to Ollie's incredibly kind and brilliant radiologist so he already knew all about Ollie and our story. After examining Ollie he told us that he can see that blood has pooled behind each of his eyes. On the left side likely because of the retina detachment and on the right likely due to a small tear. He still has slight peripheral vision in that eye, although the blood is making it more difficult to see anything. The blood will need to be removed through a surgery. In addition there are new abnormal blood vessels growing (Neovascularization) that need to be stopped through a laser surgery. 

 Photo description: Ollie's eyes are examined by Dr. Dollin at The Ottawa Hospital Eye Institute.

He felt that even if we'd caught the retina detachment earlier he'd still have a very low chance of recovering any vision in his left eye given the extensive damage and with the passage of time due to COVID backlogs, there is no chance of re-attaching and seeing anything now. The pressure in his left eye is twice as high as it should be, so we need to reduce that and have been given eye drops that he takes twice a day for this. 

Essentially we need to keep his eyes healthy so that he can keep them both. That's the real goal now and if we can clean up/repair the right eye to keep any peripheral vision/light that he has, that's our hope. He also intends to consult with his glaucoma specialist colleague as he feels we may want to consider using some of their techniques to help Ollie.  The next step is that he has an ultrasound on his eyes in October 15th followed by a follow-up with the retina specialist. At this point they'll have a clearer picture and actual recommendations to move forward.

To be honest I was disappointed that it wasn't better news. Although I have accepted Ollie's blindness and didn't honestly expect any significant improvements in his vision, I had hoped re-attachment was the way we'd go to preserve the eyes. Ollie had a different viewpoint about the appointment, though. He said it was a good appointment and when I asked why he said, "They didn't say there was nothing they could do, Mom. Doing something and keeping my eyes is way better than them saying there's nothing they could do!" As always my brave, wise beyond his years boy surprises me with his hope and positivity. And if he can be okay with it, so can I. 

On the philanthropic front, Ollie participated in his school's annual Terry Fox Run/Walk recently. He told us he was walking for all of the friends that he had at CHEO who were still battling cancer. Most of his school friends and a few at other schools were walking for Ollie. I got the most heartwarming photos from parents we know of their kids wearing their Walk stickers which say, "I'm running/walking for:" and where they'd written "Ollie". So thanks to the incredible Terry Fox, my boy is continuing his legacy by inspiring others to keep raising money for cancer research. Giving and kindness are cycles we are so glad to be part of.

 Photo description: Ollie wearing a mask doing the Terry Fox Walk with his white cane in the school's neighborhood. Photo courtesy of his educational assistant.

I was also pleased to do a testimonial for the Department of Immigration, Refugees and Citizenship Canada last week for the Government of Canada Charitable Workplace Campaign (GCWCC). My friend Allison, with whom I used to work at Treasury Board asked me if I might speak at their event and highlight some of the many charitable organizations that have helped us. I was glad to have the opportunity to encourage others to give to so many worthy organizations and to do my part to remind public servants why we give - because it was our family this time, but could happen to anyone. You never expect to need the support of your community in this way, but are so grateful to have it when you need it. My testimonial seems to have been well received, although the Deputy Minister and Assistant Deputy Minister noted how emotional they found it and I can understand that as I am totally honest and open about it. By the end of doing these I typically feel like I have an emotional hangover. Why do it then, you might ask? Because someone needs to and because it is part of my healing process to get it all out and to try to create a legacy of good coming out of it all. And I'm tired of the stigma that we must hide away our feelings of sadness and anxiety. Why is it okay for so many to display anger openly these days over their disagreement with COVID restrictions and mandates, but still not okay for the rest of us to share genuine human emotion that may actually evoke the empathy that we so desperately need in the world right now?! And I always try to share my honest feelings including the incredible gratitude and wonder that we've felt over our son's survival and the kindness we have been shown constantly. I'll keep doing it as long as I keep getting asked and feel it may make a positive difference in the world.

We were thrilled to hear that Pfizer had submitted data to Health Canada this week as a precursor to their request for authorization of the COVID-19 vaccine for children ages 5-11. Ollie asks me daily if there's any news. He's waiting impatiently to get his vaccines as he knows it will be a game changer for us and finally allow us to live as normal a life as possible without the constant fear that he will get COVID and be seriously ill or worse. He desperately wants to be able to have regular playdates and attend birthday parties like a normal kid. To go out in public without us trying to keep him away from other people. To be able to hug people (still with masks on for a while no doubt) without fear. I want that for all of us, too. We're hopeful that before Christmas he'll have at least two doses and that maybe we can even see family and our closest friends then. We owe them all the biggest hugs after doing so much to help us save Ollie these past two years.

So wish us luck and send us your prayers for clear scans this week and good blood tests later this month. We'll update you when we can. In the meantime, have a happy Thanksgiving, but please be safe if you are seeing family and keep your gatherings smaller than normal to reduce the risk of COVID numbers increasing drastically after the holiday. 

Fighting the Bah Humbugs

Wow! December 1st already! The days have been so busy that I haven't had time to write anything in over a week. It feels foreign not to write now. Like part of Ollie's story is being omitted, but truthfully, he is doing so well and the story has become kind of routine for now.

 Other than routine bloodwork and check up at CHEO every second Monday, he's only had a pulmonary test last week. Ollie was super calm and sailed through it no problem. His breathing and lungs look normal and so much better than when we last did this at Sick Kids. He was relapsing the second time then before his first failed attempt at getting the stem cell transplant and he had major shortness of breath. So no permanent damage to his lungs now! Yay!

We're still eating a lot of Ollie's Pizza from Gabriel Pizza, only lately it's customized online to add pepperoni to it, too! If you are in Eastern Ontario and haven't tried it yet, there's still time and don't forget it helps Candlelighters Ottawa to help families like ours fight cancer.

There's still exciting moments like receiving an unexpected package from Louise from Brampton (Google her!) who has been so kind to Ollie and Abby as one of her many random acts of kindness in honour of the little innocents taken too soon at Sandy Hook. The package came at just the right time for Ollie who was feeling "glum" about Christmas this year. Even though he's well he knows we can't see family this Christmas because of COVID-19.  

We did start decorating for Christmas. Neither of the kids have been into it much this year. I'm really trying to bring the Christmas cheer, but so far it's a slog. Wish me luck!

Funny thing is last year at this time we were in hospital for 12 days for round 1 of chemo. AND Ollie landed back in hospital for 4 days just before Christmas with an infection, only getting home on December 23, but Christmas was still joyous because Gamma and Bumpa came. They helped us to bring some festive atmosphere and to squeeze whatever joy we could out of it even though cancer was still new for us. In an incredibly bizarre way, last year was one of our best Christmases because we took nothing for granted and simply tried to find joy in anything we could.

So we're slowly injecting Christmas. Like putting up my Grandma's tree from my childhood.

And setting up our usual artificial tree,  thank goodness as we wouldn't be allowed to have a real tree anyways with the need to keep bacteria, mould and mildew away from Ollie's still developing immune system. I am grateful right now that we have very few plants and most are cacti.

 

So our tree is up, but not decorated yet because I want the kids to do it with us and they're not feeling it yet. Maybe we'll each add one item to the tree each day and talk about the ornament's significance or why it brings joy until the tree is decorated...in the meantime, Chewbacca has claimed it.

This one cracks me up...still wearing the Halloween shirt and now grudgingly adding the elf hat...

The past week Ollie has also be practicing with his cane on the many mild days we've had. We learned a few things. First that the repair at the end of our street obstructs the lines Ollie and other blind people need to tell them they're getting close to the end of the sidewalk. Thankfully when I contacted our City Councillor about this, he and his office staff immediately agreed to get the City to fix this ASAP and to put up a solar-powered speed radar in hopes that will slow cars down on our stretch to make it safer for Ollie. We are grateful to Jeff Leiper and his team for their assistance in keeping our Ollie and all blind and low vision people in our neighborhood safer.

We also learned that to make the audio signals go at the traffic lights, you have to hold the button for 5 seconds. There is Braille on the button that tells you North-South or East-West directions. There's also often a big tactile arrow now to further assist blind and low vision people in knowing which button goes which way. Then there are different audio tones for North-South (Cukoo-Cukoo!) and East-West (Chirp! Chirp!)! Mind blown! I never thought to wonder why there seemed to be different tones!

Ollie's still working on becoming more independent. He can now use this

pouring device to pour his own drink and know when it's getting to the top! Once the liquid reaches the prongs on the inside of the glass it starts beeping and buzzing. It scared poor Ollie the first time and he spilled his milk! Second time was the charm, though and he's mastered it now.

With a little help from his vision itinerant teacher he just finished reading his first full Braille book on his own! My how far he's come for a kid who just started learning Braille this summer!

She also sent him a tactile ball with a tether he straps to his wrist and now he can play catch with me or toss his ball against the wall and easily find it again! He LOVES it. Laughed out loud in glee the entire time we first tried it.

And we commissioned our dear friend Sohail (who is a talented welder and metal fabricator) to make us some railings for the deck and front porch to make it easier for Ollie to go up and down confidently without assistance. This will be helpful when the epic accessible play room out back is ready (big reveal to come early in the new year!).

Abby is liking online learning a bit better now that they're doing more interactive things like science experiments (wish they teach them to clean the kitchen after!) and they're using online breakout groups and she's getting to know some of the kids in her class better. She currently has only two friends from her actual school in her virtual classroom.

And she's still helping Ollie to do karate and actually benefiting from it herself, too.

The last few days she just felt like dressing up, so she did and put all of us jeans and track pants wearing folks to shame.

Mario is super busy at work. Still working from home mostly with the odd day where he has to go in for a contractor to do work or to pick up or drop off a piece of equipment. His days are longer than normal, but I know he's trying to make up for the many days over the past year where he put in shorter days to come to hospital to see us or to be there for big procedures and tests. We are grateful for the flexibility of our employers and the fact that they never had an issue with us prioritizing our son's health over work. It's shocking to me that some employers would not be as understanding to an employee with a sick family member.

As for me, I'm good most days. Some days are great, like this one where we played in the snow completely joyously, without worry about Ollie's health. Others are overwhelming and hard. I've finally finished the paperwork and obtaining documents for my next EI claim and my LTD claim. Service Canada advised me to go for both at same time and decline one of I get both. Hopeful we get one as my 35 weeks of caregiver are now done and I am without income. Thankfully I also got our taxes done with the help of our terrific accountant, so the return from last year should help us bridge this period. We are grateful that we have not had to take on much debt to-date as a result of the generosity of people and support from charitable organisations. 

I also had an interview with the new chair of the parent advisory council for Hematology and Oncology at CHEO and the Director of Hematology and Oncology. They're looking for new members and I'm thrilled to be joining them. As it happens, we met the chair while inpatient on 4 North and she's currently at Sick Kids with her daughter who had a bone marrow transplant almost three weeks ago. She was so kind to me and told me that she'd been referred to our blog when she was looking for current info on BMT. She said she'd been afraid of BMT, but started reading and found it so helpful that she read the entire blog! She told me that she felt I was writing exactly how she felt and what she experienced with her daughter's journey and she was at least one person helped by what I wrote. I was in tears. As she said, we are bonded in the same club that none of us ever wanted to join. I got a message from her today that her daughter's counts are going up and she's engrafting! More happy tears! I have an overabundance of these lately.

Mentally we all have our moments. Break downs, outbursts, sensitivity, overreaction, unexplained sadness or depression, anger...they come at the most bizarre times, but thankfully we seem to be taking turns as opposed to all melting down together. LOL The therapy is helping and even Ollie seems to see the value in it. We bumped into our social worker last week at CHEO and when she asked how he was feeling, he told her angry and sad sometimes and maybe he should come and see her. She immediately said she would and asked me to set up a time. 

He's a different child emotionally than he was a year ago when he NEVER wanted to talk about his feelings and it was a revolving door of social workers, psychologists and psychiatrists trying to talk to him over the past year. This tells me he's going to be okay because he wants to be. He knows he'd rather be happy and the only way to get there is to get the bad feelings out. If only adults understood this as well as he is starting to.

I'll likely write more later this week to finally share what Abby's been up to with CBC. Stay tuned!

Together at last!

I was going to keep you all in suspense until later in the blog, but I'm just too excited to tell you...we've busted out! Discharged on Day +34, baby!!! Back to our rented condo in Toronto for the next month and if all goes well we'll be back in O-town before end of September! 

But I'm getting ahead of myself...getting to this point alone was eventful this week.

To encourage Ollie to eat, drink and basically be normal over the past few days, they began reducing his liquid nutrition (TPN) and fats (Lipids) and disconnecting him from his IV lines for several hours daily. He was pretty psyched to move around unencumbered, but not thrilled to be eating as so far nothing but dill pickles and chicken noodle soup tastes good to him. 

We worked on drinking water and juice and physically moving a bit more.

We made some crafts...first up was this sign that he insisted on posting on his door...

The dedicated child life specialist, Madison answered the call as always and came to play a couple of days.

Next up on the crafts was bracelets...Ollie asked me to help him find the letters to spell out...

Team Ollie! And then he made one for each of his front line team...so Mommy, Daddy and Abby all have matching ones.

He was happy just to be able to sit on the day bed (where Mommy sleeps) instead of his own and to actually wear a hoodie because he wasn't hooked up to tubes on his arm.

Yesterday he was so excited about the day's plans that he woke up at 5 am completely ravenous and wide awake. 

So chicken noodle soup for breakfast! And earphones and a movie after so mama could sleep a bit more!

This was why he was excited...Abby had been granted approval to come and visit thanks to the Patient Assistive Care Team (PACT) advocating on her behalf as the sister and his donor. They've been apart for 5 weeks now and it's been hard for both as her lifesaving stem cells fought inside of him to graft and become part of him. At a time when they're more connected than they've ever been they could not be together. All that was ending yesterday and he was over the moon to see her.

We all spent the afternoon together, reunited and so so happy. 

We played Nintendo Switch games, talked, danced, watched an Ollie rock concert, and just generally were silly together.

I loved that our nurse, Corie just took it all into stride and happily worked around us because she knew it was a special time.

Abby and I took a bunch of his stuff back to the condo last night as they had told us Ollie might be able to go home on Sunday! 

This morning at 7:30 am the boys called us to tell us he might NOT be able to come back today. His magnesium levels were low because  his Tacrolimus medication (immuno-suppressant to avoid rejection of the transplant) can have that impact. I told them that the pharmacist on the Bone Marrow and Stem Cell Transplant Unit had told me on Friday that he'd likely have to take a supplement and we'd know how much based on tests this morning. 

A couple of hours later they called back to say they were giving him a magnesium infusion and after that should be able to be discharged.

Abby and I had been frantically cleaning the condo to ensure bedding, surfaces, bathrooms, kitchen and floors were bacteria free before he came back.

Finally, we went over to get the boys. Daddy moved what was left down to the van. We had a dressing change...another shout out to nurse Corie who was so patient with Ollie and let him help to safely remove his own dressing which is normally traumatic and painful for him. 

Then Ollie wasted no time getting shoes on (his first time wearing regular shoes since May as his feet are no longer swollen!!! Stem cells are amazing!) and determinedly walking to the hall to get into his wheelchair to get out of there. 

The nurses hooted and cheered while he left including some of our many favourites like Jenn (the lovely charge nurse who suggested signage to identify Ollie's blindness to have people help him better), Corie, Liz, Lilla and Emily (sorry that we didn't get to see others like Cherie, Ayisha and Hailey). We are grateful to all of the nurses, doctors, child life specialists, the music therapist, art therapist, Clowns A. Lebut and Fern, Fred the chaplain and the entire PACT team. I was in tears leaving just thinking about what we were leaving with and all we had to get through to get too and complete this part of the journey. 

One of the nurses a few nights ago asked me about Ollie's blindness and I explained to her (the Cole's Notes version of ) all that had happened to my unstoppable lymphoma warrior over the past year. She was incredulous after and commented that they as nurses on this unit often forgot that the cancer kids have had so many trials and tribulations before even arriving at transplant. 

Getting back to the condo (after I went to the pharmacy to pick up his 9 meds and supplements), Abby was overwhelmed and hangry and arguing a bit with Mommy and Daddy. Ollie comforted her and insisted we needed to give her space to feel more in control. He's learned a lot this year about emotions and how to handle them.

About an hour after being home with us and eating a bit of pasta, Ollie took a nap.

Abby did stone of her own art therapy...

And when he woke up a couple of hours later be willingly ate some hummus and pita and drank a juice box, proving that the doctor was right and kids federally eat and drink better at home. Normalcy. So simple and so underrated.

We still have to go back to clinic tomorrow and Tuesday mornings for bloodwork as they may need to adjust his dosages to ensure the meds all work optimally together, but that's a small price to pay to be together at last!