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!