Education vs. Ignorance

This week like so many others my children go back to in person school. Abby for the first time since March 2020 when the pandemic hit and she went into online learning and next month would mark two years away for Ollie as we basically pulled him out when his intensive testing to get to diagnosis began in October 2019. I'm trying to remember what it felt like to send them both off into the world with no significant fear. I had no idea how our entire life was going to change in mere weeks. The only indicator that anything was wrong was a small bump on his neck that we still thought was a little infection. Maybe that's why I'm so scared now - because I know how it can all change in a moment. 

Photo description: Then 7-year old Ollie and 11-year old Abby pose on their front porch for their last back to school photo in September 2019, before cancer diagnosis and COVID-19.

We've debated long and hard what to do about schooling this fall. On the one hand we know that the kids want to go back and need socialization and "normalcy" for their mental health. On the other hand Ollie is still technically immuno-compromised. Even though he's been strong enough to stop his anti-viral medication and have all of the non-live vaccines to-date, he remains at some level of risk for COVID-19, Measles, Mumps, Rubella and Chicken Pox. The oncologist felt that all but COVID were manageable/minimal risks given childhood vaccines are mandatory for kids to attend public school (unless they have a medical exemption like Ollie currently does for the MMR and Varicella vaccines) and we don't often see outbreaks. 

 Photo description: Ollie hugs his famous stuffy Llama Llama Blue Pajamas and holds Dawn's hand while a CHEO nurse on each of his sides gives him one of the 10 doses of childhood vaccines that he has received again post transplant since February 2021.

Three years ago there was a measles outbreak in the schools causing Ottawa Public Health to crack down and start requiring that parents report their children's vaccinations or be suspended from school. Last year when we got back from transplant there was a chicken pox outbreak at CHEO (nearly gave me a heart attack). Nevertheless the oncologist assured me that for anything other than COVID if Ollie is exposed and we get him to hospital quickly there are treatments we can give him to keep him safe. The same cannot be said about COVID-19. She said, send them back, but watch the numbers and if they rise or there's any at his school, pull them out.

I know this is also a happy moment for them - a milestone - but I've lost a lot of sleep, ran every scenario through my head dozens of times and cried so many tears of frustration and fear. Part of this is the fear of him coming into contact with one of these illnesses. The other part is the fear of returning to "regular" life and somehow the cancer comes back and we're back to battling. You see, it's easier to keep wearing the armour than to take it off, get used to living without it and possibly have to put the heaviness of it all back on again. I think this might be how medical workers battling COVID-19 are feeling right now, too during this fourth wave. 

Photo description: A cheerful Ollie gets ready to play Beyblades in his playspace after an orientation visit at his school last Friday with his English teacher, Vision Itinerant teacher and Educational Assistant. 

I've also been with him almost every single day (minus the 3 days I had to take Abby to Toronto for her stem cell donation medical assessment and Mario stayed in hospital in Ottawa with him) of the past two years. I've been his mother, his coach, his caregiver, his playmate. I am the keeper of all Oliver medical history (his doctors generally ask me to explain history or point them to the right time in his massive medical chart) and I am the coordinator of his whole life. Keeping him alive and my family intact has literally been my whole life these past two years. I am on the precipice of big changes in my life and my future as his begins again. Also a milestone and cause for joy, but PTSD remains and I now stress more about making plans for the future. Oh the irony of a former strategic planner being afraid to plan! This is all way harder than leaving Abby or Ollie for their first day of daycare or school!

 Photo description: Ollie drives a Little Tykes car while ECE Silvia talks to him on his first day of daycare in 2013. His sister had been with Silvia for the 4 years prior, so Ollie had known her since birth making his transition and mama's pretty easy.

I have zero qualms about leaving them at their schools with the amazing teams there. Ollie's (and Abby's former) school had no cases of COVID last year. A testament to the community and staff's efforts to keep our kids safe. Also, staff and families at his school have helped enormously to get Ollie well and support us these past two years. The principal and her staff are arguably the kindest and most committed team of educators around. We honestly have a dream team around Ollie this year including incredible English, French and Phys ED teachers, and an incrediblly patient and committed EA (who messaged me last year when Ollie went blind and told me she'd get started on learning Braille in hopes of helping him when he got back!) who we know thanks to our 9 years at St. George. Every one of them and so many others at the school sent food to our home to nurture our family, participated in prayer circles, loved and cared for Abby and followed us online when Ollie was sick.

 Photo description: A recent tweet from St. George School sharing a Kids Kicking Cancer fundraiser promotion with a photo of Abby and Ollie and calling them two of St. George's heroes.

We also have an amazing vision itinerant teacher (who was the first person to reach out to me about getting Ollie into the vision program in June 2020). Also on our vision itinerant team are excellent Orientation and Mobility and Daily Living Skills teachers who will each work with Ollie once a week to help him to continue to learn how to navigate his world blind. Finally, we are blessed to have an occupational therapist, a physiotherapist, a child psychologist and our dependable POGO Interlink Nurse Graham from CHEO also on the team. All of this is mainly because of the blind/low vision program, but also because of his cancer. We are so grateful for the supports available.

Honestly what more could I ask for?! And I asked for a lot and got it all and then some! So you can see he/we will be well supported and I know how invested they are in helping him thrive and stay safe this year. More tears from me, but these ones are of gratitude.

 Photo description: Abby and her dearest friends from St. George gather to catch up before returning to middle school while masked and sitting on top of the monkey bars at their former elementary school. 

On the Abby side her wonderful resource teacher at her new school who tried to help from afar last year had her in for a tour of the school last week, told her what class she was in and how things would work. We also got to see our dear friend Eleri who teaches there and assured me she was there for Abby, too if she needed anything. This set my tender heart more at ease. More amazing educators and nurturing women to help my kid. Thank God for the village. 

On a different but related more, education is so needed in this country right now to combat the ignorance of the anti-vaxxers and fear mongers. I have been reading about how anti-vaxxers and people who are anti-vaccine passport are protesting at hospitals all across Canada and blocking access for critically ill and cancer patients, families going to pay their last respects to a dying family member, women arriving in labour, paramedics bringing in accident victims, etc. It even made it into the New York Times. And the worst part is some of the protesters are medical staff!!! I'm upset. No. I'm appalled and angry.

 Photo description: A screenshot of an online article from News1130 City News in BC. The photo is of unmasked angry anti-vaccine and anti-vaccine passport protesters in front of a hospital/cancer centre. The headline reads "B.C. cancer patients forced to walk through mob of protestors to get to appo..."

I have had to bring my cancer kid into 4 different hospitals' emergency rooms, for clinic visits, for chemo admissions and radiation treatments over the past two years. Every single time it was hard. Gut wrenching often. On most days I was super anxious and had to put on my emotional armour just to walk through the door. If I had had to walk or drive through protestors who could further endanger my child's life, I may have killed someone. And I am not a violent person, but you have read about me going mama bear to save him. I'd do literally anything to protect my family and especially my son who has endured too much pain and sacrifice during his battle with cancer and recovery from stem cell transplant. 

This is not okay behaviour, Canada. Peaceful protest is one thing. Willfully blocking people battling death from their lifesaving treatments, shouting at them and spitting at them (especially during COVID, but really anytime since their infection fighting neutrophils are low during treatment) is NEVER okay! I am past the point of trying to give people like this any benefit of the doubt about their intentions or freedoms. This is mob mentality pure and simple and does not belong here (or anywhere really)! Please be human beings not monsters like this!!!

Photo description: The flag raising on September 1st, 2021 at Ottawa City Hall for Childhood Cancer Awareness Month. Mayor Jim Watson speaks at a podium while Jocelyn Lamont, Executive Director of Candlelighters Ottawa and 10 cancer kids and their siblings join them. Ollie and his CNIB Buddy Dog Hope are near the end on the right.

Last week I stood beside Ollie at City Hall during the Candlelighters Childhood Cancer Programs flag raising to mark September as Childhood Cancer Awareness Month. I stood among cancer families who have had unimaginable things happen to them while they battled their child's cancer for YEARS. I was teary as each child there who is a survivor or sibling of a child with cancer took their turn cranking the flag up. I was completely choked up when Ollie was the last to raise the flag with our patient mayor's help. It felt like planting the victory flag after a hard battle won. Just like war. Innocents. Kids who should be able to just be kids and not be aware of childhood cancer and suffering at all. Do they or others like them deserve to face angry mobs to survive?! 

 Photo description: Ollie takes his turn at the flagpole cranking up the flag with assistance from Mayor Jim Watson while Dawn, Hope and other kids stand nearby. 

As always, Jesus was right. The little children will lead us if we let them. They learn hate and mistrust from adults. It's not natural for them. They are pure of heart. They are accepting of differences and more tolerant than we are. They are always willing to help. This fall, let's all be like our brave children who just want to be well and go back to school. Ollie just wants to be with his friends and learn. He and so many others like him who have fought critical illnesses know too much about the world's agony and ugliness already. They survived it all and still want to rejoin the world with positivity and happiness. 

 Photo description: Ollie lines up a putt at a mini golf course in Ottawa while enjoying his last days of summer vacation. With a lot of verbal feedback given his blindness and some help navigating between the holes, he did very well.

If everyone does their part to keep each other safe, we can all get back to what we loved about our pre-pandemic lives. We can remember what makes life worth living. 

Send me (and Mario and Abby) your strength and prayers to help our courageous boy re-enter life without further anxiety and fear. We've had enough. Be like my brave Ollie and find the joy even during times of uncertainty. Wishing everyone a safe back to school (if yours haven't gone back already) and fall.

 

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. 

Suffering and Shortcuts

*Note:

This post includes some photos of the effects of Ollie' s last, very harsh round of chemo. While I don't consider the photos gross or gruesome, I realize that some may find them upsetting and if you are one who might, I suggest you skip this post. Rest assured that his pain is being well managed and his post-chemo burns and bruises are healing. 

On Sunday Abby and I went to mass while Mario was with Ollie at CHEO.  I am always comforted by mass, but I do find the prayers of intention difficult these days as I know they'll read Ollie's name under the sick that we should pray for. I tear up every time and usually whomever I'm with (Marie-France, Maria, Claudia, etc.) does, too. Each time I pass around tissues and compose myself to get through the rest of the mass. Sometimes a song lyric makes me weepy, too. Mass is emotional for me because it is the place where I feel most that everyone around me is praying for us. Truly I know you're doing it in your own homes, too. 

On Sunday, our priest Monsignor Hans delivered a homily that felt like he was speaking directly to me. So much so that I took notes, which Abby thought was weird (I guess it was, but didn't want to forget any key messages). He talked about suffering and how there are no shortcuts through suffering. Boy can we relate to that.

Ollie got second degree burns from the adhesives on the bandaids and medical tape on his body after this round of chemo.

 He also has bruising and bed sores from his low neutrophils (still neutropenic at 0.1) and post-chemo reaction. 

Monsignor spoke of faith as a long game and how these are confusing and dark times in the world and faith is needed more now than ever. He said the way forward will be long and unknown, but that we must be open to the things that are coming. Once again it was like he was speaking about our situation specifically, even though I know he was referring to the seeming lack of faith, kindness and caring for our fellow humans in the world right now.

He also asked:

- Has my faith grown stronger/deeper in the last 10 years?

- What have I invested in my faith?

- How can I strengthen my connection to God?

- How can I connect others to the faith?

I was able to agree that in the last handful of years I have deepened and invested in my faith by participating in so many activities in the Church. And by extension I have gotten so much more back from my investment. Peace, faith, positivity, dear friends, strength, etc. That investment is what is sustaining me through this, the most difficult time of my life to-date.

And from there he went on to talk about community and evangelism explaining that it is about bringing faith to others who have lost it or never known it. This struck me as uncanny because Charity (dear friend who is also the youth minister) and I had a conversation 4 years ago about how she thought I was an evangelist for community. At the time I laughed, but recently I called and told her I now understood that she was right and I am an evangelist. Not in the Billy Graham kind of way, but rather in that here I am sharing our story that is resonating with so many following it, being honest about my faith and its role in all of this and people are responding. Here are some examples of beautiful messages I've received:

My response to each of them was that it helps me to know that if some people rekindle their faith because of our situation, then something positive is coming from this experience.

So in this time of fear and darkness in the world right now, we are now also faced with the Coronavirus and the death and fear it is leaving in its wake. It's actually affecting us directly, in fact. Don't worry, we don't have Coronavirus, but Sick Kids Hospital called me today about his stem cell transplant and given world concerns over it's spread, health organizations around the world are now recommending that all transplants with anonymous donors only happen right now if absolutely necessary. Also, the first donor couldn't be reached and the second is willing, but can't do it until late April. Sick Kids doesn't want us to wait, but feels that the best chance now is Abby. 

They said with the anti-rejection drugs today, they have done many successful half match transplants. If he does reject, given timelines and safety concerns now, the backup would be myself or Mario. 

Our funny, strong, dramatic daughter will now be the best sister ever giving her own life saving stem cells to her brother. 

 I wept quietly while talking to the Bone Marrow Transplant team. I so hoped we wouldn't have to ask this of her, but she has said from the outset that she would absolutely do it. In fact, she has prayed about it every night.

There is good news in that we did bank her cord blood and they're going to look at whether there is enough volume to use. Also, because of her blood type if they have to harvest directly from her they plan to take her blood instead of her bone marrow. They'd basically give her an injection called the G-CSF (Ollie has had this after each round of chemo to boost his production of white blood cells and neutrophils) once a day for four days, then take her blood. It immediately goes into a machine like they use for  dialysis and separates out her rich stem cells. Normally this takes a day and would be done right before his transplant.

They now want Abby in Toronto on Monday to do her work up and then we'll come back until Ollie is needed in Toronto for March 23 to prepare for his radiation to start April 1. So harvesting/transplant day is tentatively April 9. 

So many other things have happened in the last days, but all of them pale in comparison to this news. 

I want to thank the St. George School community for their generous donations to help us with expenses for our three month trip to Toronto and my brother for starting a Go Fund Me campaign to help us with expenses and covering loss of income now that I have officially applied for employment insurance for caretaker leave. People are overwhelmingly generous and we are so grateful, but also mindful that so many have already helped us enormously in so many ways. We mostly just need your continued positivity and prayers. And hugs (when you're well)!