The Brave Boy and Therapeutic Clowns at CHEO (plus Mario photobombing)

Wednesday 24 June 2020

Signs, Survival and Winning Battles

Every time we go to CHEO we pass Cancer Survivor's Park. Before cancer (what we refer to as BC these days with no disrespect meant to Christ Our Lord) I always thought this was a strange place for a park given how busy this intersection is.
I never understood that this was a gateway for Cancer families. Both a beginning and an end to their cancer journey in a way. You pass through on your way to the Ottawa Regional Cancer Foundation (located just behind the park), the Head Office of Canadian Blood Services, CHEMO and The Ottawa Hospital with it's Cancer Centre. You can also pass it on your way back. 
The sculpture is by a Mexican sculptor named Victor Salmones and is entitled, "Cancer: There is Hope". The piece features eight life-size figures passing through a maze depicting cancer treatments and success. The most prominent of these is at the front of the park, emerging from the maze with the parents looking determined while relieved and the child looking carefree and happy. 

As we travel further down Alta Vista Drive towards the hospitals, the sign in front of Canadian Blood Services ALWAYS flashes, "Stem Cells for Life" at me as I pass. 

Until Ollie had cancer I missed a lot of signs. Like he says, now I can see the light while he lives in the darkness. Now I try to read the signs for both of us.

So all signs have pointed to him being better and I desperately wanted to see those signs, but worried I was misinterpreting them or reading too much into them.

Turns out I wasn't! 

REMISSION!!! WOOHOO!!! GOD IS GREAT (and so is science!)!!!

 
The lumbar puncture showed no lymphoma cells in his cerebrospinal fluid. The MRI shows that the lymphoma lesions that were on the lining of his brain are gone and there is no evidence of cancer anywhere. While his optic nerve still looks inflamed,  they believe it is due to it continuing to heal and said it looks better than when we last went to Toronto in remission. In our Ottawa oncology team's opinion the Lorlatinib and radiation worked and he is in remission! They've sent our results to Sick Kids Hospital in Toronto to get their opinion on next steps but are recommending stem cell transplant as soon as possible. 

We should hear about next steps in the next few days. Assuming Sick Kids agrees, we will likely be headed there for stem cell transplant in the next couple of weeks. Second time WILL be the charm for us and he'll finally get Abby's selfless stem cells and her strong immune system with them.

So there was happiness here tonight, although we're cautious because we've been here before on the brink of a potential cure, only to have it ripped away from us at the last minute. Abby and Mario really want to downplay things until he is fully cured. 

Ollie and I have spent the most time in hospital, in the physical and emotional reality of this disease day in and day out. We're going every battle together and forced each other to keep going no matter what. That's not to say that Abby and Mario haven't felt all of this deeply, but I sat in ICU for a week with my son when he was seriously on the precipice of death (while Mario and Abby were ill with the flu and couldn't come to the hospital), begging God to save him. I know too well how lucky we are to have made it back from there and to have this second opportunity at getting him the transplant. The foremost expert in his disease in Canada honestly thought this was a long shot. 

So we'll celebrate this victory (our Ottawa team says it is a BIG victory and how amazing Ollie is to have gotten here) even if only by being silly together tonight, playing games and watching Ollie gleefully (blindly) driving his remote control car around the house. 

The Lorlatinib is proving to be a miracle drug for us and another family we have connected with in the UK whose daughter is on it too and got her transplant almost 4 months ago. Remember that last time he had only been in remission for about 5 weeks when he relapsed. It's also the extra insurance that we may need to keep him in remission this time until we can get the transplant. 

Thanks to all of you for nurturing us through all of this. We haven't won the whole war yet, but this was an important hill to capture. This hard fought battle has turned things in our favour.  Thanks be to God and all of you for helping us to get here!

We'll keep you posted as we know next steps. Please continue to keep us in your thoughts and prayers. While this is all honestly miraculous in many ways, and I hate to be greedy, the real miracle we need is a successful transplant. Let's hope Sick Kids agrees.


3 comments:

  1. Thank the good Lord!! This is so fantastic--congratulations, warrior family!! We will keep up the prayers for Ollie and all of you, as you keep moving forward to his cure. God bless you and keep you, and may his face always shine upon you. xoxo

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  2. Hugs to you all from a far... Great news.

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