Sandy Hook Acts of Kindness and Christmas Spirit

December 14th, 2020 was the eighth anniversary of the devastating shooting at Sandy Hook Elementary School in Newtown, Connecticut. Each year since the tragedy I have held my babies tight on the anniversary and thought of those 26 families who lost their loved ones senselessly in a heartbeat. I pray for the families of the 20 little angels who never came home from school that day in 2012. Ollie was just 6 months old when that happened and Abby was 4 and a half and in her first year of school. I remember being decimated by it and crying while imagining the horror of losing my child. Mario made me turn off the news because I felt it so acutely.

Last year we had just gotten home a few days before the anniversary after round 1 of chemo. It was the first time in my life that I had a tiny inkling of what real torture it is for parents to grapple with their child's mortality (little did I know how close we'd come to losing Ollie in the months after). After the anniversary last year we were only home a few days before Ollie landed back in CHEO with his first of several infections due to low neutrophils. And as scary as it was, I just remember thinking that even with cancer and infections, at least I still had my child to hug. And we were lucky enough to make it back home again on December 23rd to be home for Christmas and then back in for round 2 on New Year's Eve last year. 

If you are feeling sad about not seeing your loved ones due to COVID-19 this Christmas, please try to remember that other families that are fighting serious illness this holiday season would happily trade places with you in a heartbeat and wish that COVID-19 was the only thing making their lives more challenging. We are thinking in particular of all cancer and bone marrow transplant families battling right now and those that have lost a loved one this year and sending them all prayers and strength to get through this holiday period. 

Earlier this year after Ollie got lymphoma in his brain and went blind, we began receiving messages of hope and thoughtful gifts from Louise from Brampton. Louise does 26 random acts of kindness each year in honour of all those lost in the Sandy Hook tragedy. She chose to send hope to Ollie and Abby this year and this has meant so much to us. Recently the kids received a Christmas package from her, complete with letters from Santa lauding their bravery and kindness this year in spite of the difficulties they've faced. It couldn't have come at a better time as it finally seemed to pull the kids out of their Bah Humbugs and pushed them into their Christmas cheer! Thanks, Louise! 

So Christmas spirit is here, albeit with a bit less excitement than past years, but we finally got the kids to help us decorate the tree.

Ollie got to add the star this year and that moment felt pretty special to all of us.

Christmas carols are being spontaneously sung, we've had some Christmas dance-offs and started watching Christmas movies. Ollie even wrapped most of my gifts this year (although despite his blindness, I still didn't have him wrap his own gifts as he's super smart and can figure most gifts out by their feel and sound!)!

Snuggling while watching Christmas movies!

He's also done some Christmas activities with his vision itinerant teacher, like making a snowman out of baking soda and hair conditioner!

And Christmas always requires funny hats...

The Epic Playroom is coming along...the kids have now dubbed it the "Clubhouse" and Make A Wish of Eastern Ontario will be helping us out to make Ollie's accessible space truly epic! More to come on that, but for now, here's a box that one of the new additions came in...

This cracked us up...

But Ollie being a typical kid insisted we keep the box and make a fort...we're now convinced we should have saved some money and instead of the Epic Playroom and just bought him a box!

The box now dominates the living room and Chewbacca has also decided to hang out in it when Ollie vacates it! 

Barely enough room for Ollie to do his karate power breathing with Daddy with the box in there!

So that's how things have been rolling here. Medically Ollie remains very well, now only going to CHEO every two weeks for bloodwork and checkups. He did give us a big scare recently when he carried a big present up the stairs on his own (after I told him not to!) and when he got to the top, misjudged his footing and tumbled down seven stairs to the landing! I heard the fall from the kitchen and went running up with my heart in my throat! Mario had been in the bathroom upstairs and cane running out as did Abby from her room. Ollie jumped up immediately and said, "I'm okay!!!" Thankfully I'm usually good in a crisis and a trained first aider at work so I remained calm while checking him out all over. Despite some bumps and bruises he always okay and swore nothing hurt. 

Mario and I were both immediately concerned about his bones and especially his hip given his reduction in bone density (he's having an MRI this week on his hip). Mario was also afraid and started getting mad at Ollie given his fear. Then Ollie started crying because daddy was mad at him. At this point I told Mario anger wouldn't help and I knew he was afraid and then I started crying and shaking. I sat on the step and started trying to do some deep breathing to calm myself and let the shock go (my therapist says my body's reaction to the stress was perfect and it shows I'm trying to let the fear go versus holding on to those feelings). Abby tried to hug me to calm me down (and herself, too). 

Ollie had stormed off to his room by then, which was a positive sign that he was physically well enough to stomp off. Mario and I went and laid with him in his bed while Abby sat on the floor nearby and we calmed him and told him that our reactions were because of our fear of him getting hurt. We assured him that we knew he was strong enough and big enough to carry things up the stairs and no one doubted his ability, but that with the reduced bone density, he couldn't take these risks yet until we were certain his bones could take a tumble! We told him that we didn't want to see him end up in hospital with a broken hip or worse. He calmed down, apologized for not listening to me and we all went to bed. At Ollie's CHEO appointment today, his doctors joked that this was not the way they recommended testing bones, but it is clear that his are still very strong and he was okay. 

Aside from this he continues to have some swelling in his eyes and it gives him the odd small headache which they believe is persistent dry eyes from all of the radiation and the optic nerve continuing to heal what's left of the inflammation, so he we'll go back to using the artificial tears for a bit. There's a natural tendency to stress that it might be lymphoma in there again, but as we discussed with his doctors today, his severe eye pain and brutal headaches came on fast when he was relapsing and his energy level was nil. Given Ollie was dancing during his appointment today and he's constantly in motion with his increased energy stores these days, it seems highly unlikely that the lymphoma is back. I am once again comforted by our decision to continue him on the Lorlatinib (his cancer is Anaplastic Large Cell Lymphoma ALK Positive and this is an ALK inhibitor that targets and blasts any cancerous cells that may try to reproduce) post transplant and remain grateful to Pfizer for providing it to us under compassionate grounds.