Bubble Family and a CNIB Dog

Radiation planning happened last Friday. It was a difficult morning because Ollie was feeling stressed. Although he'd been to Princess Margaret Hospital for radiation planning before, this time he was not sedated. All they really needed to do was take a CT of him on his back with his head to one side and his front with his head to one side, but he fought it every step of the way. 

For the total body radiation that he'll have twice a day for three days next week, he'll be on a mattress on the floor. They basically "tent" the radiation beam over his entire body. Twenty minutes on his back, then he can take a break, go to the bathroom, stretch or whatever he needs for a few minutes, followed by twenty minutes on his front doing same. He cried that he couldn't be on his stomach with his head turned to one side for 20 whole minutes! He did eventually get the 3 minute CT done on his front last week, but it was a battle. 

So we've been practicing at home since and that little devil insisted on doing it for the full 20 minutes the first time with no problems then or since! He'll be fine once we get into the groove, but I'm not looking forward to the twice a day and having to lie around in a room in the Sick Kids Day Hospital in between. If he feels well enough, he'll come back to our condo each of the three nights.

We've had his check up with the Bone Marrow Transplant team and his levels are good, all the tests we did last week came back clear and he's ready for transplant. I've signed a pile of consents for his radiation, chemo and transplant. They tell you all of the risks including the mortality rate from transplant (5-10%), but as I told Dr. Ali, it's not like we have another choice if we want to save him and if I had believed the statistics the last time I was with him when Ollie relapsed, I wouldn't have believed he'd have made it back here to transplant at all. He laughed and conceded the point, saying how impressive it was that he was back and healthier and stronger than the last time. I told them not to underestimate my boy.

His new hydrocortisone steroid is making him quite sleepy during the day, so he maps a lot and he sleeps only about 5-6 hours at night. We're adjusting his dosage and timing in hopes we can fix this.

Ollie's been begging to see grandparents, so Gamma (my mom) and Bumpa (my stepdad) became part of our bubble the last few days, driving up from Blenheim to spend time with us. It's been 6 months since we last saw them at Christmas. That was after round 1 of chemo when Ollie was still his active and sighted self. So much has changed since then, but not our joy at being with them.

It's the first time since COVID that any of us have touched or hugged anyone but our little family. The kids were so happy. And I was grateful to have my mom with me. As a mother going through one of the most difficult things one could imagine as a mother, I have found myself often wishing that my own mother lived closer. She has been a constant support through this, calling and texting almost daily, reminding me to take care of myself too, her and Carl sending packages and money regularly for whatever we need. 

She's told me more times in the past 9 months how strong I am and how proud she is of me than I think she has my entire life. I've been a strong and independent woman since I left home for university, always wanting to do things on my own. The few times I have asked my mom for help (mostly to come and care for the kids for a few days when we didn't have childcare, when I had Ollie, etc.) she always agreed to come. Every time we have invited Gamma and Bumpa to meet us somewhere for a vacation, they have. 

They are excellent grandparents and my children adore them. This visit didn't disappoint either. They arrived loaded with groceries and many gifts from my aunts and cousins. 

They were simply happy to do whatever we needed and the kids wanted while they were here. From my always hustling and bustling mom taking time to play Beyblades and Connect Four with Ollie...

...to them both patiently learning Braille while professor Ollie taught them, Gamma and Bumpa made time for what is most important. They took walks with Abby and asked Ollie many questions about his Beyblades so he could demonstrate his expertise.

Bumpa has infinite patience and was great at giving Ollie clear directions to build Lego. And I can tell you it is not easy to give a blind person specific instructions that help them to see with their hands...especially with something as small and intricate as Lego. 

Abby was so happy to be with them, too. She's getting better about her fear around COVID thanks to working on it with her social worker. 

We assured her before Gamma and Bumpa came that they were socially distancing and wearing masks everywhere in public and that Chatham-Kent had less than a handful of cases left and had only ever had a few dozen in total during its height. 

She was happy and silly during their visit and my heart felt happy to see her being a normal kid.

Bumpa is also pretty great at bringing out their silly sides...

We also had our phone interview for the CNIB Buddy Dog Program on Monday. We were fascinated to learn more about the Guide and Buddy Dog Programs, especially the fact that most of their dogs are bred in Australia, placed with families in Canada to be socialized and conditioned before actually being trained as Guide Dogs in Carleton Place, and that the CNIB pays for all of their food, vet bills, etc. even when they are finally placed with their ultimate owners! We were shocked, but grateful and intend to be regular donors to CNIB when we're both back to work.   

We made it onto the waiting list and they offered us the chance to meet one of their dogs in the Ambassador Program. Given Ollie is psyched about getting his Buddy Dog and we know the next weeks will be long and difficult, we want to bring him as much joy and stimulation as we safely can this week, so we agreed to meet Ziggy the Dog and Audrey his handler today. 

Audrey was so kind and patient. It was easy to see why the CNIB chose her to be a host family for Ziggy and later an Ambassador in the Ambassador Program when they discovered that Ziggy had hip displasia that counted him out as an actual Guide Dog. 

Ollie was pretty happy to have the experience. Everyone asked a ton of questions and Audrey patiently answered them all. Since we come from a big family of animal lovers, we all enjoyed the experience.

Ziggy also brought Ollie a little Buddy Dog stuffy (and then promptly licked it causing Ollie to laugh) to remember the visit. 

We're all pretty excited about this opportunity for Ollie now and feeling more comfortable about the resources available to make Ollie's unsighted life easier going forward.

Ollie also got a package of rare Beyblades today, so was pretty happy overall despite having to say goodbye to the grandparents this afternoon.

Abby got a silly dinosaur night light that is apparently all the rage on TikTok and YouTube these days. 

Before they left, Gamma and Bumpa were full service guests, washing their bedding and remaking the bed before leaving. My Energizer Bunny mom had also vacuumed and washed all of the floors yesterday while I was at the hospital with Ollie and Mario was working.

So we are feeling loved and grateful for family, while knowing we have many many more in Chatham-Kent and in Western Canada who wish that they could come and help, too.

We have no more hospital visits this week, but will be at the hospital every day next week prepping for transplant.I find it so surreal that we are back and a week away from transplant. Please God, keep him in remission while we get to transplant. 

Marie "Condo"-ing

We made it back to Toronto! The journey was uneventful for the most part and we are again grateful to our brother from another mother, Vic for packing us up and following us in a van with our belongings and moving us in, all while wearing gloves and a mask.

Our condo is nice and more modern than the last one, with the added bonus of an extra bedroom. At about 1100 square feet, it's still a lot smaller than our house, but it's comfortable and a block away from the hospital, so perfect for our needs. 

Toronto is busier than it was two months ago, but still not normal. Abby seems more comfortable this time, though and choosing a condo half a block away from the old one was a good decision. Ollie didn't want to stay in the same building as last time as he had bad memories of the relapse and wanted a clean start. We'll do anything to keep him mentally healthy as we go through this next challenge.

Abby got into the unpacking, putting all of our clothes away, Marie Kondo-ing them as she went. LOL

She picked a cosy little room off of the kitchen that would likely be truly considered a den. It's central to the living area, which will be good for keeping her engaged with the family since in typical tween fashion, she often wants to be in her room alone.

She brought a few things to personalize it and we bought a few things at the dollar store to make it feel like home for her for the next few months. I remember my parents moving a lot when I was a kid (they were divorced and one liked to buy, fix up and flip houses and the other was a real estate agent), so I got really good at making my new room feel like home wherever I was. 

We've lived in our house in Ottawa for 15 years this fall and I never imagined Abby would have the experience of trying to make a new place feel like home during her childhood. She's had a lot of new experiences because of cancer. Hopefully they will make her strong and adaptable her whole life, although I pray she never needs those qualities for a challenge like this one again.

She's also gotten into fresh smoothie making daily. It helps us to stay healthy and gives her something productive to do each morning, too. They're delicious so far!

 

Ollie has had his stressful moments, but has mostly been okay. Friday's radiation planning was tough as he was being obstinate when they tried to do his CT. They do the CT on his back with his head turned and then on his stomach with his head turned. When they did his stomach he screamed and cried- saying he couldn't keep his neck turned to that side for so long. Honestly he can do it, it's just that when he becomes fearful of something or has had enough he refuses to try. 

The technicians and the coordinator, Rita, were lovely and helped us through it. He did get it done in the end, but it made me nervous as we'd decided to do the two times daily radiation without sedation to make it faster and easier for him. If he has the sedation he'll have to be NPO (no eating, only sips of clear fluids allowed) from midnight until about 5:30 pm. That's because they need 7 hours with an empty stomach before sedation and his radiation is at 7:55 am and 3:30 pm. He'll be a bear if we have to do things that way! 

He says he'll work at stretching his neck next week and try it without sedation, but if he can't, it will likely change the timeline on everything and we NEED him to get the treatment and transplant ASAP. The good news is Ollie ALWAYS gets the hard stuff done. As much as he blusters about things he doesn't like, he never gives up. 

Mario is doing alright. He's holding on to that crazy beard until Ollie gets his transplant. Superstitious. He's been calmer this time settling in to Toronto. We both feel more confident, less fearful and more determined than ever that we are getting that transplant and leaving here with a child in true recovery after an agonizing year. 

He's still working from home thanks to his organization still being closed and his boss being so understanding. Friday a kind friend and colleague of his brought the family some Roti and jerk chicken. It was delicious and a lovely change.  

 

Ollie slept a lot yesterday and that worried us. His sleep patterns have been off at night lately, though so he's pretty tired at times during the day. Thankfully having consulted with some kind parents in the UK (thanks Lisa and Julia!) who have already been through this with their kids who have the same cancer, we believe it's due to finally stopping the Dexamethasone steroids this week after 5 months on it constantly and starting on the new hydrocortisone. The hydrocortisone should help to restart his own production of a natural steroid (cortisol), but so far has given him acne, dry skin and some minor mood changes. 

Given this, yesterday was a rough day, peppered with a few bright moments. Between worrying about how much he was sleeping (always fearful that lymphoma is back in his brain and trying to take over) and the online funeral that Abby and I attended for little Malcolm, we were pretty spent by end of day. 

Before the funeral though, a sweet friend from my youth, Frances and her son drove from the Hamilton area to bring us fresh preserves and canned pears. A true taste of home. When we were here last time and I was in the hospital with Ollie when he relapsed, she sent me the most beautiful survivor story and message of hope about her incredible daughter. She told me that miracles DO happen and that her daughter was daily proof. That was what I needed to hear at that moment. A heaven sent message that helped me to keep going when I felt all was lost. 

And she was right. It's a miracle that despite the odds he got back into remission and is here to get that transplant. Miracles happen. We don't need another miracle, just stability and strength enough for him to get through transplant and get truly well. We can do this.

I think maybe she was sent to me again yesterday to bring me strength just before we attended little Malcolm's online funeral. Like informal spiritual strength being brought to me. I'm surrounded by strong mamas who have done the hardest things and got through them and so can I. 

I've never attended a child's funeral before and I pray to God that we never have to again. It was a beautiful service, but that little white casket was devastating. His parents are so strong. Especially his brave mama. But she knows she has two other children that still need her. One of them still in her belly. She feels grateful to have been his mama. Not angry (although that may rightfully come later) at him leaving too soon, but pure love at having had him for any length of time. She is so kind that on the day her son died she also wished us well in Toronto and asked us to keep her posted on transplant because she wanted to know and Malcolm loved Ollie. Mamas are the bravest warriors, soldiering on and spreading light even in their darkest moments. 

Abby insisted on watching with me. She's an empath like me and felt it deeply, especially as she knew Malcolm has an older sister who just lost her brother. I tried to comfort her, telling her little Malcolm was too little and sick to fight the tumour after battling for 7 months and that I can't believe God would make Abby the stem cell donor for her brother, make him relapse, get him well again for a second attempt at getting her stem cells and not let her save him. Then I backtracked a bit to tell her if it doesn't work it's not her fault and she's done everything she can. It's hard not to give her mixed messages right now. I can only reassure her that I feel deeply that we are on a journey to remind people what's really important in these difficult times and to share our faith for those who may need some right now.

I apologize as I don't want to make it seem like I am hijacking nor exploiting Malcolm's story or his family's pain. It's just agonizingly a part of the cancer journey and as I try to be truly honest about what it's like, I must also include the things that impact us and our mental state, even if they are part of someone else's story. You're going to know some people who don't make it despite their brave fight. When it's a child, I think it's universally understood that it's so much more tragic and how could we not be affected by this beautiful family's story?!

So last night when Ollie finally woke, refreshed and full of energy, we were so grateful and played blindfold NERF gun target shooting with sticky darts with him. The blindfold was to even the stakes for Ollie given his blindness. We played in teams and gave directions to the blind/blindfolded person to help them hit the target and get the points. Ollie was thrilled, especially since he won.

Overall we're feeling okay and resting up this week for next week's radiation and chemo. We are studying plays so we have some tricks up our sleeves when we need them and readying for the big game in which we intend to come out the victors. Please keep cheering and praying for us. It pumps us up and makes us eager for battle.

The Last Battle

The last handful of days have been eventful and exhausting. On Sunday we learned that our CHEO friend little Malcolm passed just ten days shy of his first birthday. His brave mama was my first real friend at CHEO and Ollie adored Malcolm. They had learned Friday that treatment was not working and they were preparing for end of life. Gut wrenching. 

I cried so much over those three days. I mourned for a beautiful family who have fought so fiercely for 6 months, living far away from home, constantly in hospital and still always being so friendly and kind to everyone around them. I wept for little Malcolm who loved sitting on the nurses laps while playing with a calculator. We had joked that he'd be an accountant for sure! I was sad for his sister who not only lost her brother, but 6 months without her whole family together. And I tried desperately to understand why some of us get a chance to save our babies and others don't. Why was his last battle one he couldn't win and ours is win-able?

I was indebted for the chance to save Ollie before, but now I feel like we really have to do this for those that don't make it, too. That we have to fight even harder to be successful in transplant to vindicate the loss of brave warriors like Malcolm. I'm not sure how Guardian angels really work, but maybe Malcolm is now Ollie's. This thought comforts me.

So the week had already started off difficult and then Ollie had multiple tests at CHEO each of the last few days so that Sick Kids Hospital is totally certain we're ready for transplant. 

Monday's CT confirmed that there is no evidence of systemic cancer. This is a huge relief. Now we just have to keep it out of his brain until radiation begins on July 14. 

Tuesday Ollie was supposed to get bone scans done to confirm his bone density as they can see on the MRI and x-rays that his bones have thinned and suspect that he has osteoporosis from the chemo and prolonged steroid use. 

They can do a calcium infusion called a bisphosphonate every 4 weeks that will help, but this could mess up his radiation and stem cell transplant, so we have to wait until after. 

Alas, after doing the first scan (see photo below), we could see that the contrast that Ollie had for the CT on Monday was still present, so they were unable to do the baseline scans because the bones would appear thicker. Hopefully we can do them at Sick Kids next week.

The rest of the tests were rough Tuesday because Ollie was tired and grumpy and frankly, scared about transplant. This makes it all so real. 

He also had a GFR test to check his kidney function, an Echocardiogram to check his heart, bloodwork, a dressing change and a COVID test. He fought the COVID test and after many attempts to persuade him to cooperate, four of us had to hold him down while he screamed, cried and kicked. He was so angry. 

Afterwards he cried in agony and said he was so tired of being tortured and didn't want to do it anymore. In his dramatic 8-year old way he insisted he'd rather die than be sick again and not have control over his own body. I cried with him over the injustice and indignity of it all and told him I hated to force him, but we have a chance to get well (a chance some never get) and we're not going to let it pass us by. 

All the while, the empathetic child life specialist, Manon was with us and rubbed my back and Ollie's intermittently as we both cried. She and the nurse, Sue (who had been there for our very first procedure which coincidentally was a bone marrow puncture) were kindness personified and I was overwhelmed with gratitude for these strong women who help us

with the hardest things imaginable and still come back and do it all over again the next day. It takes a special kind of strong and dedicated person to work with sick kids and their families day in and day out.  They are all angels on earth.

Thankfully there have been good moments this week that make up for some of the bad. Abby participated in the Great Make A Wish Campout to raise money to help fulfill the wishes of Wish Kids like Ollie and our friend Hillary. 

The rain came, but was short lived and left a double rainbow in its wake. We raised $1,100 thanks to the generous donations of friends and family. I feel like we're always asking you to help, but you keep showing up! Hopefully going forward it'll be just this kind of help we ask for to help others instead of ourselves.

Ollie was sad not to be able to camp out, so he and daddy made a tent around his bed and had epic Beyblade battles.

Ollie also had two osteopathic treatments this week. Dear family friend Elliot Vlad offered last fall to treat Ollie for free and I admit, I knew little about osteopathy. I did some research and found that osteopathy can at the very least help cancer patients to manage pain and discomfort and relax. That was enough for us as Ollie needed all the help he could get. Elliot began treating Ollie in January, coming to the hospital and doing treatments, often when Ollie was sleeping. What we found was every time Ollie had a treatment, he'd sleep better, the next day he'd have way more energy and he'd be able to do things he hadn't done in a long time (like take a long walk or climb stairs). 

At one point Mario was with Ollie during a treatment. He didn't know Elliot that well and he is a natural sceptic, but this is what he texted me after the treatment. 

Ollie's feet and legs have been very swollen because he is retaining fluid and his lymphatic system is blocked up from the steroids and chemo. So Elliot saw Ollie Monday after his regular day at his and his wife (and our dear friend) Tamara's clinic, Life Therapies and also gave up part of his Canada Day yesterday to squeeze in another treatment. 

The difference is always impressive. Ollie hadn't walked up the stairs without assistance in days, but Monday night and since he's had no issue and says his feet don't hurt anymore. He's able to get his regular shoes on for the first time in weeks. On Tuesday at CHEO he was his old full of beans self and even his oncologist couldn't get over his energy level and how well he was moving.

Most important, Elliot has schooled us on what we can do at home to keep him moving well. Ollie is also under strict instructions to wiggle and shake his body a lot and he is happy to oblige.

I have long believed that it's generally a combination of therapies that heal us and wish that hospitals and governments that make decisions about what is a covered treatment and what is not could better understand the intrinsic value in things like osteopathy. We are beyond thankful for Elliot and Tamara (and their sweet kiddos who are friends with ours) for sharing their skills and for their ongoing kindness.

Abby has been readying to leave again, knowing she likely won't see her friends in person all summer. I am struck again by how much sacrifice she has had to make this year to get her brother well and how most of the time she accepts it with grace.

Chewbacca (the cat) seems to know that his warrior buddy is leaving again and has been his constant companion lately. Ollie is going to be so great with his CNIB Buddy Dog when our turn comes to get one after he is well!

The selfless folks at Gabriel Pizza came through with half baked pizzas to freeze and take for the journey to Toronto. Ray Skaff, Mike and team at their Vanier location on Montreal Road arranged it all and were so gracious and sweet when I picked them up yesterday. 

Also yesterday on Canada Day, I got a call from my lovely sister-in-law, Nikki to tell me that her brother and mother in Blenheim, Ontario (my hometown) had seen Ollie's Pizza on the Marilyn Denis show. So I went online and watched and sure enough, they featured it as a Good News story! You can watch it here at 35:38. So we've gone national with our little story about a boy, his pizza and helping kids fight cancer through Candlelighters. 

When I started this blog 8 months, 116 posts and almost 99,000 views ago, my main goal was to raise awareness of childhood cancers such as his very rare Anaplastic Large Cell Lymphoma. Never did I imagine that we'd go national or have followers from around the world. Mario and I were teary yesterday watching our story on The Marilyn Denis Show and we are awestruck that so many of you are interested and following along. Thank you for validating my labour of love.

So we finished packing what we could last night and fell into bed exhausted.

Today we're on the road to transplant. It feels surreal but so good to be doing this again. I feel more confident and we're all less stressed this time, knowing better what we're getting into. Ollie has been great the last two days. Getting to his place of strength where he knows that he has to do more hard things, but pragmatically accepting that he just needs to get them done. He is a model of adaptability, perseverance and determination. 

Thanks as always to our village for equipping us for this last big battle. From bringing us dinners the last weeks and sandwiches for the journey, taking care of our home and zoo of pets while we're away, offering to take Abby in September if school starts normally, packing us up, and sending so many messages telling us you're behind us, we know how blessed we are and that we've gotten this far due in large part to your love and contributions. Ottawa, we'll miss you and be back as soon as we can with a well Ollie.

Toronto, we're on our way! Thanks for already helping us by making masks mandatory in indoor public spaces starting next week! We look forward to a much better experience with you this time! 

Birthday Blessings and Woes

Yesterday was an insane day filled with a roller coaster of emotions. It was Ollie's 8th birthday and in the end that made it a good day, but there were several stressful and sometimes sad moments for us. I'll get to the stressful and sometimes sad stuff later, but first the good stuff...

People were overwhelmingly kind as always, dropping by goodies, cards, gifts, honking their love for Ollie as they drove by, sending a ton of online messages for him and making donations in his honour to Make A Wish Eastern Ontario (also in support of their Great Make A Wish Campout happening this weekend) to support the wishes of brave kids battling unfair illnesses like Ollie and our friend, Hillary McKibben. Thank you for always loving my kids and showing up when we need you.

At one point, Abby and I were on the porch talking to friends on the sidewalk when a man walked by, stopped and told us he had seen Ollie's story on the news. He said he makes balloon characters and could he put some in our front yard for Ollie? Turns out Brad the Balloon Guy is our neighbour a few doors down! How kind!

Later that evening, dear friends Casey, Maria and Sofia (who have been running our meal train for the past 8 months and doing ANYTHING we needed them to do) brought over the cake that Sofia had made for Ollie and joined us in a socially distanced celebration. Ollie was thrilled to have them and especially to show his NERF arsenal to Casey who is an officer in the military and a fountain of munitions knowledge. Ollie adores being part of interesting conversations with adults and his incredible brain retains so many technical details about things that he couldn't get enough details from Casey who was so patient.

Earlier in the day we got some gut wrenching news from another cancer, family that we have become friends with at CHEO. They've been told to prepare for end of life. Sometimes life is so very cruel. And so hard to understand why some get cancer and most don't. How some are saved and some are not. It's the part I constantly struggle with in my faith journey. 

Ollie heard the tears and wavering in our voices that morning and asked what was wrong. So we had to tell him on his birthday, the week he was told he is in remission and will get a lifesaving stem cell transplant, that his little friend may not make it. Ollie immediately did the sign of the cross and began to pray for his little buddy. It was beautiful and so sad. I was so proud of him and his faith despite everything he's been through, but also so heartbroken that this is happening. Their family has been in our hearts and our thoughts constantly since then, but we tried to go on and make the day as positive as possible for Ollie's birthday. Please say a prayer or send strength and positivity to the family of little M.

Later in the day we also opened presents Ollie was pretty pleased with everything he got. 

Ollie also got some lovely messages from Gabriel Pizza and the Ottawa Health Group (whom we miss dearly and will have a lot of work to do to fix my back after all of this!)

We had an online meeting with the Bone Marrow Transplant team at Sick Kids Hospital as well. It was good, but stressful. Abby sat with Ollie while Mario and I were in the meeting, but moments before both kids had been upset and crying...just a reaction to the stress that we can all feel surrounding us right now.

They can't start Ollie's radiation at Princess Margaret Hospital until July 14 because they don't have a bed for Ollie in the Bone Marrow Transplant Unit at Sick Kids until then. So we need to be in Toronto for this Friday, July 6 for the radiation planning, will have a few appointments and tests there the week of July 6, but the next big step starts July 14. Three days of two sessions of total body radiation daily, followed by two days of chemotherapy. Sunday the 19th will be a day of rest and then he gets Abby's lifesaving stem cells on July 20. From that time on Ollie and I will be admitted until he grafts, his new immune system is functioning (about three weeks) and he is strong enough to be released to stay nearby for about a month (about 6-8 weeks after transplant).  

The hard part is he'll be really sick again, likely lose a lot of weight (thank God he's fat from the steroids), have the mucusitus (mouth sores) again and just generally feel awful after being so well these past weeks. It's really hard to regress in order to ultimately progress and be cured. 

And of course, there are no guarantees. Thankfully, they are splitting Abby's stem cells in two because they have so much (thanks be to God and our overachieving daughter), so if the first transplant doesn't graft we have a second chance ready to go. 

But there are so few cases like Ollie's to base his treatment on (he himself is already part of several case studies because of his unique situation). Thankfully Dr. Ali is open to consulting with doctors of the few other families we have found around the world in similar situations. We are grateful to all of them for sharing their experiences and giving us hope.

Mario and I were sad after the call because we know how sick Ollie will be again and it's painful to have to choose to make him sick again. We also know we need to do this. We fight as one. It will be hard, but we can do this and finally get him well. It's his best chance at long term survival. Naturally we are also concerned about the timing. We don't want to wait too long and risk relapse again. The doctors are very aware of this, too. 

The few days before yesterday were also busy. As the kids wrapped up their school year online, I was planning to move our life to Toronto for at least the next 2-3 months and thankfully found a condo nearby as Ronald McDonald House needed us to be inpatient at Sick Kids for at least two weeks to be considered there. Thankfully the Pediatric Oncology Group of Ontario (POGO) is helping families like ours by paying for up to $100 per night towards accommodation as a result of COVID and difficulties getting into Ronald McDonald House. Between that and the generous gifts of cash we've received from so many friends and family, we are able to have a place to be together for the two weeks before transplant and a place nearby that is safe for Mario and I to swap places (as safety allows) for each of us to see the other child. With all of the stress we already have, we appreciate not having to worry about money right now despite my reduced income. People are overwhelmingly kind to us.

Ollie was so tired in his final class meet that he fell asleep for part of it, but was happy to wake in the end and wish his friends a happy summer. His teacher said a beautiful prayer including an intention for Ollie's stem cell transplant to go well and that he'd be healthy and back with the class next year. His class has been unwavering in their efforts to include him all year and let him know how much they love him. We couldn't have asked for better for him and are so thankful for the entire St. George community.

Abby's last class meeting was also bitter sweet. She has received so much love and compassion from her classmates, friends and educators this year. Her teachers, the principal and everyone at St. George have wrapped her in their love (even from afar during COVID) and taught her so much about kindness and selflessness this year. I also got a beautiful message from her teacher telling me how much she had learned from Abby's resiliency and bravery this year. This is the power of kindness and of mentoring. The mentee often teaches the mentor as much as the mentor teaches them. 

We take all of the St. G community, our friends and family with us in spirit as we go through the next step. Six months from transplant when we have a green light for him to be in public again (or whenever COVID is no longer am issue), you're all invited to the biggest party around and I have talented friends in event planning who have already come forward to help us put it together.

I am not sure how much time I'll have to blog over the next few days as we have a ton of pre-transplant tests at CHEO with Ollie, need to pack and ready to go, but promise to blog when I can. Thank you for continuing to follow along with us. We feel your strength behind us, propelling us forward to a cure. 

Present Time

"There's no time like the present and,

there's no present like time."

I feel like we're racing against lymphoma. Our CHEO oncology team called this morning and told us Sick Kids Hospital agrees that things look better than last time and Ollie needs that transplant NOW. They will confirm tomorrow after conferring with Princess Margaret Hospital (where we'll do the radiation), but want him in Toronto and ready to do his total body radiation starting Wednesday potentially. They don't want to take the chance that he'll relapse again. 

I knew it would happen fast, but this is warp speed compared to last time. It's good, just stressful to find a place to stay and prepare to pack up our life for 2-3 months in Toronto in only a few days. Thankfully I am an expert planner.

While we're all happy that he's in remission again and going to get the transplant finally, we are also scared. We've all had our moments today breaking down while we processed the monumental thing that is now going ahead so rapidly. This disease gives you no time to adjust before everything changes again. Late this afternoon we all went to Toys R Us for a curbside pickup (a little safe retail therapy for the kids) and to McD's for a drive through ice cream. Just being together driving was calming and centred us again. We fight as one and we win as one.

We are grateful for the gift of the last few months at home to recharge, especially June which has really been our summer together. Since Ollie and I are about to spend a lot of time inside a hospital room, I have to think God gave us the beautiful weather He did to ensure we didn't feel cheated out of an entire summer, too.

I am working with our Pediatric Oncology Group of Ontario (POGO) Interlink Nurse to see what options exist for accommodations this time as it appears Ronald McDonald House is open again, but were also looking at renting a condo again just in case. Thankfully we all get to be close to each other and in the same city over the next two months until we know what is happening with school for Abby in September.

Back to the subject of radiation, thankfully they don't need to do more brain radiation, but he'll have three days of total body radiation with two short sessions daily. They'll do the transplant within a few days of that. The fact that they can use his double lumen power PICC to do the transplant and won't need the Broviac central line put back in his chest is excellent news and makes me feel we made a great decision to take it out to make him more comfortable when we got back to Ottawa. 

Some scary news is that as soon as we have a solid date to start radiation, he has to stop the miracle drug Lorlatinib as apparently it in combination with transplant can put too much stress on organs and cause death. This means he'll have no treatment until he starts radiation. Evidently also the main reason that they want him there immediately to start radiation and hold the lymphoma back that way. 

We're not fearful of the radiation now that he did 13 sessions on his brain and came out the other side well. We do know that this time they'll make him aplastic which means they'll wipe out his entire immune system, his vaccinations and any ability to fight off infection. This is a nightmare anytime, never mind during a pandemic. Once his immune system is gone, he needs the transplant to survive. And we're not certain that Toronto going into Stage 2 of COVID-19 with some restrictions lifted actually makes us safer in any way. 

Thankfully Abby's frozen stem cells are waiting and if need be, she can donate more. For her graduation one of the gifts we gave her was a necklace and pendant. The pendant (another beautiful piece from Sonya Roe Jewellers in my hometown, beautifully chosen by my dearest friend) has her name on the front and on the back it reads, "2019-2020  Grad, SC Donor, Hero". We did this weeks ago before we even knew for sure he'd get her stem cells, but wanting to acknowledge this amazing gift in an extraordinary year. This will be the beautiful completion of her lifesaving gift. The best present she'll ever give any of us.

Speaking of presents...This is an even bigger week for our family as Friday our Ollie turns 8 years old! He was a gift when he was born and his remission and survival was the wish I made on my birthday 2 weeks ago, so he's the gift that keeps on giving.

Given COVID, we can't have a real party yet, but we know Ollie would appreciate your online wishes, cards, drive by honking and any little bit of attention you have time to send his way on Friday. He seriously needs NOTHING but a transplant (and maybe a pair of size 5 Crocs if anyone knows where I can find some!), and you've all given him so many beautiful gifts already! Little gestures would be lovely to make his day special. Sweet friends Henry, Dylan, Erin and Ben took time today to stop in for a quick pre-arranged socially distanced visit to celebrate his birthday and he was thrilled. 

This will truly be his last opportunity for any real interaction with friends before transplant, so while we need to be safe, we also want him to have all of the love and attention that the bravest of lymphoma warriors deserves before his biggest and hopefully last battle in this war. You've made him feel so loved and remembered these last 8 months and he's having a hard time with the idea of having to go back to stay in hospital to feel bad again for another 6-8 weeks. 

So we ready to go into battle and Ollie has added to his Arsenal (at least his NERF one) today thanks to early birthday money from family. While the NERF munitions won't really help us in this next big battle, if it makes him feel stronger and better prepared to fight, it's worth it.