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

Saturday 30 November 2019

Like having a newborn all over again...

Breakfast of champions...

Parents, remember that feeling from when your babies were infants and you were so sleep deprived and suddenly one night they slept through the night and you awoke refreshed and then immediately panicked because they didn't wake and so there must be something wrong with them?!

After a solid night of sleep with Ollie having no fever and his PICC line finally fixed, I woke at 7:30. It was an 8.5 hour sleep for me where I woke only twice when I heard the nurse checking his vitals and when he woke to pee once. He slept 11.5 hours! 

Naturally I immediately checked that he was breathing, just as I did when he was an infant and then my logical brain reminded me that they're monitoring everything and alarms would have gone off if there were problems. 

Unfortunately, he did feel sick when he woke and since he had thrown up his dinner last night because he seemed fine and we didn't take the Gravol last night, I asked a nurse to give him something preemptively today. Sadly we got it too late, so he did more throwing up this morning, but he says he felt better after and the meds quickly worked so he could eat some toast. 

Mario was here last night while Abby was at youth group bowling and just trying to be normal.  This morning we were messaging. Them having morning snuggles there and us doing same here while exchanging pictures. It felt a bit like when we were in the hospital having Ollie and I was in the hospital for four days after the c-section while Gamma was home with Abby. That was our longest separation as a family to-date.

Inter-family communication...

Thank God for texting, video calls and social media. I can only imagine how difficult all of this was before technology long ago like when my dad and his siblings were young adolescents and their dad had cancer of the larynx. 

It's hard for folks who have never been around a cancer patient undergoing chemo to understand how prudent it is to avoid bacteria and potential viruses. The chemo basically kills Ollie's immune system meaning that any little bug that would normally only mean a runny nose or sore throat could land him in isolation and require other meds, blood cultures, oxygen tents, etc. In fact CHEO does not permit any kids under 14 to visit from November to March during virus season (siblings of patient excepted, but only if they're well) to keep all kids safe. So we can also video chat or send photos if anyone wants and Ollie is feeling well enough. His teacher has already tested an online video chat with us and it is ready to go!

Speaking of his teachers, we were thrilled to have a visit today from St. G teachers and friends, Mrs. Didiomete (Ollie's actual English teacher this year), Mrs. Hatoum (On Parent Council with me and Abby's former grade 3 teacher) and her daughter Gabby. It really brightened Ollie's spirits and he laughed a lot. I cannot give enough kudos to his amazing school and the selfless people who work there. I felt this way before all of this and now I know that God intended us to be among his angels on earth to help see us through the darkness. 

Ollie being silly with Mrs. D, Llama Llama Blue Pajama, Gabby and Mrs. H.

Mario and Abby are coming shortly and Mario will stay tonight with Ollie while I spend some special time at home with Abby. This is all an incredible balancing act, just like it was with our newborns...trying to puzzle out our roles in a way that is complementary and makes us the strongest team. I have to say that when the kids were born Mario really surprised me with how tender and helpful he was with all of us and those same incredible qualities continue through this situation. Then and now there have been so many moments where I was so happy that I married my strong, yet loving partner. After 15 years together (11 with children), we have grown together to adapt to whatever our new situation is and I am so thankful that we are in this together.

Finally, there's the fact that I am now off for at least the 6-8 months of his treatment, just like I was on maternity leave. Mario and I have terrific employers do have told us to take whatever time we need and not to worry about anything there. I am off as the primary caregiver and M is taking time off for big stuff.

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