New directions

The last few days have been "brutiful". On the one hand we had the excitement and beauty of the kindness from the Gabriel Pizza launch of their Ollie's Pizza with proceeds going to Candlelighters. 

On the other hand we've been living the silent brutal agony of waiting for results of his tests. We knew early in the week his MRI showed that his optic nerves had calmed down, but we also knew that there were unexplained spots on his leptomeninges (lining of his brain). Wednesday's optomology exam confirmed that the optic nerve had calmed down, but there were also some abnormalities they wanted to check on again next week. 

Thursday's lumbar puncture was the defining test. It seemed to go okay and Ollie was a trooper as usual. 

We got home feeling pretty happy just to be together.

Ollie had McDonald's as a treat for being so brave (as always). Thankfully he didn't choke on the fries he couldn't shove in fast enough!

The doctor called us late Thursday afternoon. Abby sat with Ollie and played word games with him while Mario and I were in the next room taking the call. 

The new drug Ceretinib is not working. He has a lot of lymphoma cells in his cerebrospinal fluid again. 

We sat on the phone hearing how this reduced the likelihood of his survival yet again and how few tools we have now to work with. We were told (Mario for the first time directly by the doctor and me for the second) that while she knew we'd been clear that we'd try anything to save him, she had to be honest and tell us that some of the options they'd look at as a team now might make him very ill and he could still die a very painful death or some might cause unexpected sudden death. I shook my head silently and cried. Wow! What a choice! Mario in his usual blunt way said let's do the next right thing and we'll cross those bridges later, but if he's going to possibly die anyways we're going to go down fighting. We agreed we wouldn't give up. 

So on that brutal note we agreed to reconvene with the whole team (Sick Kids oncology, radiation, bone marrow transplant, and CHEO) Friday to decide on next steps and they'd have a plan. I spent the rest of Thursday researching options and talking to folks on forums online about what we might try. I sent some possibilities to the oncologist to see if they'd been considered. 

We had decided not to tell the kids until we had a plan. Being in the condo together and unable to cry or rage was hard. All we wanted to do was be with him, yet each time we snuggled him or rubbed his little fuzzy head (his hair is growing back) tears appeared and we had to hold them back. I couldn't even really call to talk to anyone about it because I didn't want them to hear and sometimes even though you have the best people in your life who love you and would bear anything for you, you just don't want them to have to share this pain. By evening I felt like I'd snap in two, so I went out to try to find him yoghurt tubes (I struck out and felt a big failure at that, too).

On my walk from one store to another, I just tried to breath. I prayed. I bargained with and begged God to save him. To let me keep my desperately wanted rainbow baby who had been such a joy since he was born. I got to the park across the street from our condo and as I walked through and saw the empty and caution-taped playground I bawled. It seemed a symbol of the pain of loving our children so much. My dearest friend told me, "Love is pain". So brutifully true.

In true Toronto downtown fashion, a woman sobbing loudly in public went unnoticed or at least unacknowledged. So I reigned myself in, wiped my tears, blew my nose, threw out my tissues and mask, hand sanitized, put a new mask on and kept on going to look for yoghurt tubes for my son. I did feel better at least.

I slept with Ollie part of last night to give Mario a break. It's hard...you want to be near him and yet you hardly sleep because every sound or movement, every breath could mean something bad. I did sleep subs and about 4 am Mario wandered in needing to be near him so I went to be with Abby. A friend asked me isn't it hard to be intimate with a sick kid? Yes, but there's also a different intimacy, like an invisible rope that is tying us together. Like we're in the same kinder class and holding onto the rope together so we don't get lost and can stay safe. Maybe God is towing us.

 

Friday we just loved and hugged our children. They knew something was up but said nothing. Abby had a meltdown about homework and I told her it doesn't matter. Promised I'd message her lovely teachers who have put zero pressure on her this year and simply loved and supported her through the year. 

That afternoon we had a video conveyed with the entire team. It was particularly comforting to have our CHEO team there, too. They've been with us all this time. 

The new plan is a third generation ALK inhibitor caked Lorlatinib. CHEO had already looked into it before we left Ottaea and asked the pharmaceutical company for it to be released on compassionate grounds. You can't even buy it yet. It was approved for us and will be shipped. We decided to have it shipped to Ottawa as Ollie wants to come home and since we're looking at an unknown timeline now, we'd rather be home and at CHEO. We think being home will improve his depression and being at CHEO where he knows everything because he's physically seen it before blindness will bring back some confidence and get him moving again. 

There will also be 13 sessions of radiation. Sick Kids said he can do them at either hospital, so again it made more sense to us to do them in Ottawa. WHEN this works (not IF) we can come back to Toronto for the stem cell transplant. Abby's beautiful stem cells are stored safely here and I have to believe that God would not make her go through that if we won't get to use them. The team assured us that transplant is not off the table, we just need to beat back those cells in his beautiful brain. 

So we told the kids we need to try a better drug and some radiation. And told them we're heading home Sunday. Abby was sad because as much as she misses home, she like me, wants him to get her stem cells and be on.the road to recovery now. Ollie was mad that we're not leaving sooner!

He proudly donned his new Gabriel Pizza gear late in the day after we read all about our friends trying his new pizza. Some superheroes wear Gabriel Pizza attire. 

Toronto, it's been my least favourite visit ever, but we'll be back  so you can redeem yourself again after COVID-19. We are grateful to our friends in Toronto who have reached out and helped when they could despite this crazy time. We'll be home soon, Ottawa!