Present Time

"There's no time like the present and,

there's no present like time."

I feel like we're racing against lymphoma. Our CHEO oncology team called this morning and told us Sick Kids Hospital agrees that things look better than last time and Ollie needs that transplant NOW. They will confirm tomorrow after conferring with Princess Margaret Hospital (where we'll do the radiation), but want him in Toronto and ready to do his total body radiation starting Wednesday potentially. They don't want to take the chance that he'll relapse again. 

I knew it would happen fast, but this is warp speed compared to last time. It's good, just stressful to find a place to stay and prepare to pack up our life for 2-3 months in Toronto in only a few days. Thankfully I am an expert planner.

While we're all happy that he's in remission again and going to get the transplant finally, we are also scared. We've all had our moments today breaking down while we processed the monumental thing that is now going ahead so rapidly. This disease gives you no time to adjust before everything changes again. Late this afternoon we all went to Toys R Us for a curbside pickup (a little safe retail therapy for the kids) and to McD's for a drive through ice cream. Just being together driving was calming and centred us again. We fight as one and we win as one.

We are grateful for the gift of the last few months at home to recharge, especially June which has really been our summer together. Since Ollie and I are about to spend a lot of time inside a hospital room, I have to think God gave us the beautiful weather He did to ensure we didn't feel cheated out of an entire summer, too.

I am working with our Pediatric Oncology Group of Ontario (POGO) Interlink Nurse to see what options exist for accommodations this time as it appears Ronald McDonald House is open again, but were also looking at renting a condo again just in case. Thankfully we all get to be close to each other and in the same city over the next two months until we know what is happening with school for Abby in September.

Back to the subject of radiation, thankfully they don't need to do more brain radiation, but he'll have three days of total body radiation with two short sessions daily. They'll do the transplant within a few days of that. The fact that they can use his double lumen power PICC to do the transplant and won't need the Broviac central line put back in his chest is excellent news and makes me feel we made a great decision to take it out to make him more comfortable when we got back to Ottawa. 

Some scary news is that as soon as we have a solid date to start radiation, he has to stop the miracle drug Lorlatinib as apparently it in combination with transplant can put too much stress on organs and cause death. This means he'll have no treatment until he starts radiation. Evidently also the main reason that they want him there immediately to start radiation and hold the lymphoma back that way. 

We're not fearful of the radiation now that he did 13 sessions on his brain and came out the other side well. We do know that this time they'll make him aplastic which means they'll wipe out his entire immune system, his vaccinations and any ability to fight off infection. This is a nightmare anytime, never mind during a pandemic. Once his immune system is gone, he needs the transplant to survive. And we're not certain that Toronto going into Stage 2 of COVID-19 with some restrictions lifted actually makes us safer in any way. 

Thankfully Abby's frozen stem cells are waiting and if need be, she can donate more. For her graduation one of the gifts we gave her was a necklace and pendant. The pendant (another beautiful piece from Sonya Roe Jewellers in my hometown, beautifully chosen by my dearest friend) has her name on the front and on the back it reads, "2019-2020  Grad, SC Donor, Hero". We did this weeks ago before we even knew for sure he'd get her stem cells, but wanting to acknowledge this amazing gift in an extraordinary year. This will be the beautiful completion of her lifesaving gift. The best present she'll ever give any of us.

Speaking of presents...This is an even bigger week for our family as Friday our Ollie turns 8 years old! He was a gift when he was born and his remission and survival was the wish I made on my birthday 2 weeks ago, so he's the gift that keeps on giving.

Given COVID, we can't have a real party yet, but we know Ollie would appreciate your online wishes, cards, drive by honking and any little bit of attention you have time to send his way on Friday. He seriously needs NOTHING but a transplant (and maybe a pair of size 5 Crocs if anyone knows where I can find some!), and you've all given him so many beautiful gifts already! Little gestures would be lovely to make his day special. Sweet friends Henry, Dylan, Erin and Ben took time today to stop in for a quick pre-arranged socially distanced visit to celebrate his birthday and he was thrilled. 

This will truly be his last opportunity for any real interaction with friends before transplant, so while we need to be safe, we also want him to have all of the love and attention that the bravest of lymphoma warriors deserves before his biggest and hopefully last battle in this war. You've made him feel so loved and remembered these last 8 months and he's having a hard time with the idea of having to go back to stay in hospital to feel bad again for another 6-8 weeks. 

So we ready to go into battle and Ollie has added to his Arsenal (at least his NERF one) today thanks to early birthday money from family. While the NERF munitions won't really help us in this next big battle, if it makes him feel stronger and better prepared to fight, it's worth it.