Forever changed or scarred?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One Year Reflection by Ollie

Today is my one year anniversary of my diagnosis. I'm feeling kind of stressed today. 

I got frustrated, mad and sad trying to do my schoolwork today that felt too hard. And then I cried a little and it was okay. The crying sometimes makes things feel better.

I loved getting new Beyblades this year. They helped me get through all of the needles and scary stuff. The hardest part of the past year was really needles and dressing changes.

I don't feel scared anymore when I have to go to CHEO. This is because I learned to take deep breaths and calm myself down when I get needles. 

I'm okay with my blindness now. It made me feel scared and mad at first that I couldn't see. I just decided to accept that I'm going to be blind. I'm still the same even though I'm blind. So far there's not really anything I can't do.

I want to say thank you to everybody who got me through this. Thanks for all of your help and kindness. And thank you for all of the gifts.

Cancer's ass has been kicked (this is the one bad word my dad let me use this year)!

(Note from Dawn that this is a transcript of exactly what Ollie told me he wanted to say.)

Ringing and Remembering

On Friday, November 6, Ollie rang the bell at CHEO, 353 days after he was diagnosed with Anaplastic Large Cell Lymphoma. We were able to arrange it so that Abby had her regular psychology session at CHEO on the same day as Ollie's endocrinologist appointment, so we did the bell ringing on a day she was able to be there. Due to COVID only parents are allowed to be present at the bell ringing. Given the fact that her stem cells helped to save him, we didn't want to do it  if she couldn't be there, so we're grateful we could work it out this way.

At Ollie's request, we live streamed it so that friends and family could be there at least virtually with us. We received so many beautiful messages from people saying how happy they were to have been able to be there in this way. In particular we loved the messages from family who live far away who told us it made them feel part of our victory. There were also those from families and teachers at Ollie's school. Parents were delighted that so many of their kids got to watch it in class and came home so excited to share the news with them. Several told me their kids never tell them what happens at school, but came home bursting with excitement and eager to share this news. Teachers told me there were cheers throughout the school as classes watched. Bells and cheers are the sweetest sounds! 

To say we're overwhelmed and grateful for all of this love and support makes us sound like broken records, but it's so very true. It's still hard for us to believe that people are so interested in Ollie's story after almost a year and so much heartache and stress that you've allowed yourself to be part of willingly as you followed along. So far the video has been viewed 1,700 times in the last 5 days! 

I think the best responses to Ollie's bell ringing were the few messages that we got from followers who are undergoing cancer treatment or stem cell transplant right now who told us what an inspiration it was to watch Ollie, who was so ill and had to overcome so much, do it with such energy, happiness and gratitude for those who helped him to get well. They also mentioned now remarkable Abby is and how humble she was, allowing her brother to have his moment when she had already done something so selfless to help to get him there. 

We have been very happy the past few days, riding the wave of the endorphins from Friday's event.

Abby had a sore back today, so Ollie, (ever the empath) offered to help her by massaging it. Maybe he'll be a massage therapist? Interesting how now I see so many possible careers for him that are so tactile and hands on where he wouldn't really need to be able to see with his eyes.

He's becoming more independent because he's feeling more energetic and confident. His vision itinerant team has also been helping with this by suggesting life skills we can work on like cooking, doing laundry, getting himself a snack, etc. After a year of being at his beck and call, we're finding it hard sometimes to let him do things, but know how necessary it is for his well being. 

He's walking more and we're hardly using the wheelchair except for long days at CHEO. Even then, he generally prefers to go on his own steam and at his own pace.

His sunglasses always make me giggle because he seems to be trying to be incognito...

So we've been getting out to enjoy the amazing weather and trying not to pick spots that are too populated.

It's important to get out of our own backyard sometimes, even during a pandemic.

So at Ollie's request this weekend we packed some sandwiches and chips and went over to the park. It was a bit too populated for Mario's comfort, so we headed over to good old St. G.

Ollie wanted to fly his remote control foam plane. 

It was a perfect day. He was so happy to be out doing something so normal that we've done so many times before he got sick, never realizing how precious these moments are.

He got so excited at one point that he began running after his plane. It's the first time he ran since January when he went blind and was so sick. Until now he hasn't been physically well enough to nor brave enough to with his blindness. I ran beside him trying not to cry (because he gets upset lately when I cry and doesn't always understand it's often from joy these days) and also trying not to stress that he'd step in a hole and fall. He was laughing out loud and with such joy and abandon. I have missed that sound so much. 

Sadly we lost the plane when the wind caught it and sent it sailing over the school. We prayed to good old St. Anthony and looked, but didn't find it that day. A long shot email to the incredible school administrator and principal resulted in them marshaling their number one finder, the kind and patient custodian who found it on the roof! We have not only St. Anthony, but saints Angie and Deb on our team!

Abby was content to be nostalgic, swinging on the monkey bars she's always loved so much. I was struck by how much she's grown up this year physically and mentally, but love that she still finds joy in this kid activity.

My darling girl is struggling with her anxiety and emotions, feeling very isolated and is inadvertently pushing loved ones away sometimes. She now knows how close we all are daily to losing those that we love most and subconsciously sometimes it's easier to detach from people than it is to feel that fear. Her daddy understands this all too well himself given his own family's death when he was a child. 

So we struggle to keep her engaged in what and who she loves most without becoming panicked as she does often lately. She is still our strong, brave girl, but she's processing a lot of big stuff and needs some time to do that. 

With the nice weather, Ollie has had a couple of socially distanced visits outdoors with masks with a couple of friends and has been so thrilled to be with them again. Just storing up some good memories to last us a bit as the cold winter comes and makes this less possible. 

Mario is doing well. Stoic as always and just happy that we're all home together most of the time. 

As for me, I'm okay. A few good days under my belt since bell ringing, which is good because we're now moving into anniversary time. One year ago today we were at CHEO for the dreaded biopsy that would confirm Ollie's cancer. One year ago today after that biopsy I began frantically looking for answers after reading "slight chance of T Cell cutaneous lymphoma" in his scan reports online and narrowed it down to ALCL. A year ago next week Ollie was diagnosed with lymphoma and the week after that the pathology came back confirming ALCL ALK Positive and we began round one of chemo.

Typically Remembrance Day for us is a reverent day where we go to the kids ceremony and take time to be grateful for our veterans and those in our armed forces and I don't want to ever forget that or detract from the brave men and women who have served. Please forgive me, but it is forever more also going to be the day for me that we started the path to a battle of our own. The day when I unofficially identified an enemy that tried to take our innocent and precious boy away any time we let our guard down. We came out the victors, but pray that we never have to fight this again, much like we pray that we will never see another world war. 

Wear a poppy. Hug your kids. Thank a veteran or active service member. Lest we forget.

P.S. - Another cancer mama tells me that the bell at CHEO is from a decommissioned naval ship, so as always the signs of everything being connected are everywhere.

He's going to ring that bell!!!

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

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

https://fb.me/e/fsCiiwL2E

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