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.