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

Thursday 27 October 2022

Final Test of the Success of the "Abby Treatment"

[Photo Description: Ollie lies in the CT scanner with his feet going in first and his arms above his head.]

Yesterday we finally got those elusive scans following an extra month of "scanxiety" after we had to delay first for a cold and then we got bumped last week because 4 CHEO MRI technicians were out sick last week with COVID-19. This made for a very tense month around our house as we waited for illness to pass and for scan day to finally come..

It didn't help that Ollie's cold was in his sinus and caused eye pain, eye goop (diagnosed as viral conjunctivitis) and headaches, when in the past symptoms of his relapses were eye pain and headaches. 

[Photo Description: Ollie readies to have an IV inserted in his arm]

As always Ollie was amazing at getting through his scans day. Handling the IV insertion like a total pro, drinking the yucky contrast for 3 hours and waiting patiently for his turn.

While waiting and drinking he had a great session with his original child psychologist who is back from mat leave and couldn't believe how well-adjusted and amazing he's doing after everything he's been through. "The rumours really are true, Ollie. You're amazing!", she teased him.

[Photo Description: Dawn wears a mask and bears her arm to show a bandaid after getting her flu shot at CHEO]

I snuck off during his session for a short while to get a flu shot while there because I am a CHEO volunteer for the Oncology Patient and Family Advisory Council (PFAC) and the Research Institute. I had tried to encourage Ollie to be with me later as I took my turn being poked for once, but he had little interest. 

[Photo Description: Ollie is dressed in a hospital gown and pants and wearing a mask with a masked Dawn seated beside him defile waiting for his MRI at CHEO.]

We had to wait a bit for the MRI, so he was getting tired by the time they took us and had to lie still for 1.5 hours while they did full head and body scans. By the end he was getting wiggly and uncomfortable, but he hung in there. As usual I sat on the very hard plastic chair and prayed a lot. Naturally for my Ollie' s wellness, but also for other CHEO warriors like Griffin who was starting his chemo for his stem cell transplant at Sick Kids Hospital yesterday, too. 

[Photo Description: Dawn poses for a selfie wearing her mask and standing in front of a creepy clown painting in CHEO's MRI waiting area. Clearly Dawn is not generally a fan of clowns, with CHEO's now retired therapeutic clown Molly Penny being the exception.]

Totally worth the discomfort and seemingly never-ending wait as we got great news today - CLEAR SCANS!!! No evidence of disease after stopping the miracle drug Lorlatinib 93 days ago that has been our insurance policy against relapse for two years. So now we know definitively that the transplant with Abby's amazing overachieving half match stem cells was a real success! I've pretty much been in tears all night once again over the gift she's given him, and the gifts that God has given us.

This was a huge milestone to pass! There were minor things seen in the scans, like evidence of the sinusitis that he's had for the past month and inflammation still in his left eye that he had surgery on 4 months ago, but all exactly what we would expect to see and they said it was otherwise unremarkable. Unremarkable is amazing news in the cancer world! 😆

Monday we're back at CHEO for bloodwork and checkup, plus his final 3 doses of his childhood re-vaccinations after transplant. We're also sending his blood to Germany again to participate in an Anaplastic Large Cell Lymphoma (ALCL) study and to do the Minimal Residual Disease (MRD) test that can detect if there is any evidence of cancer cells left in his body. If this test is negative like last time, we rejoice. If positive we have decided with his medical team to put him back on the Lorlatinib as we won't take the chance of relapse again. Wish us luck, but honestly we're feeling pretty positive and hopeful right now.

So thank you all for your positivity and prayers. God and science are so unbelievably great and we are divinely blessed. If you could, please send some prayers for Griffin and his mama Tamy for a successful transplant. He's been battling off and on the past 4 years of his almost 6 years of life and deserves to get to true wellness, too. 

2 comments:

  1. Hallelujah! So glad for you and Ollie and the family! What a relief.

    ReplyDelete

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Keeping the Family Healthy During and Post Cancer

When Ollie was first diagnosed I had a terrible upper chest and sinus infection. Likely exacerbated from the stress of testing and diagnosis...