Transplant detours

It's been a pretty quiet week. We've spent it going for walks, nearby drives when requested by Ollie (a drive through Daddy's childhood in Toronto), playing with new toys (thanks to those who have sent gift cards to order things to keep the kids amused!) and working on school stuff. 

We've had a few laughs and some little arguments. The kids are feeling "cooped up" in Ollie's words and sad that we're not in our own home and neighborhood. Ollie's mood is mainly due to the steroids (Dexamethasone) that he's on to reduce the inflammation in his brain. They make him moody, aggressive, angry and sometimes sad. Thankfully this is just short term. 

Abby is missing friends, finding online learning a bit isolating and overall feeling overwhelmed at Ollie' s challenges. 

The waiting is hard on everyone. Today we got some good news, though. Ollie had bloodwork and a check in with his oncologist. He was so grumpy and mad that after a brief chat with him, Mario came to get him and I stayed to talk to Dr. Alexander and Sonia the social worker about next steps. His bloodwork from earlier this week is perfect. The doctors feel that the new meds are working and we can start reducing the steroids. They want to do a CT, MRI, and Optomology scans at the end of the month (in about 2 weeks). They'll also do another lumbar puncture to check the cell count. 

Once they review the results, the oncology (CHEO and Sick Kids), radiation, bone marrow transplant and optomology, teams will confer and decide if they think we can proceed to bone marrow transplant. At this point they all still think this makes sense if the meds work and kill the lymphoma cells. If they see progress, but there is still evidence of lymphoma present, we may need to continue with the Ceritinib ALK Inhibitors for another month or so. In the rare data that does exist for kids using Ceritinib, most kids responded well within 2 months. There are also kids who have been on Ceritinib and stayed well for over a year, but I am not a proponent of giving him a drug for a long time where there is no evidence of the long term effects. 

Plus we're looking for a real cure, not an ongoing treatment. While there are no guarantees that it will cure him for good/that he won't relapse, stem cell transplant is the most likely path to a cure and long term quality of life. He may still need to be on Ceritinib and/or other meds for a year or so after transplant as insurance against relapse, which we are totally okay with. 

So we'll stay in Toronto until his next tests are done and a decision is made about bone marrow transplant. If it will be months more before transplant, then we'll likely go home to Ottawa to wait. If we only need another month on the drugs to get there, we'll stay in Toronto. I believe that we were meant to be here to get the transplant. I don't understand why we have to weather another roadblock on that path, but we'll take the short detour and get back on our path. 

In the meantime we are making good use of our time together and reconnecting at least virtually with old friends in the area. We are grateful to Awi and Tanya for dropping dinner by a couple of times and even though we had to maintain a social distance and couldn't hug, it felt like yesterday since I had seen Tanya. 

My dear friend Christina lives here in the GTA and I am glad to have connected with her even if we can't see each other. She and I used to travel a lot together and she always joked that all roads lead left, but at the moment I believe that all roads lead to transplant.

I love that reconnecting with old friends here feels like no time has passed despite everything. We've been lucky to have such lasting and true friendships and their support is so helpful right now.

Abby and I also did interviews with Canadian Blood Services yesterday for an online story they're doing on Abby and Ollie, sharing her stem cell donation and his fight. All in the interest of encouraging young people to consider getting swabbed as Canada intends to focus on national donors as it rides out COVID-19. Naturally the writer was impressed by how mature and well-spoken Abby is for a soon to be 12-year old. I sat in for her interview and was again overwhelmed by what she did for her brother. I was also struck by how like me she is in her responses and speech patterns. I had answered some of the same questions earlier in almost the exact same way. Whether her answers were the result of her actually listening to the many lessons I've tried to impart to her or her value system being so like mine that she thinks the same way, I was struck by how much responsibility and influence we have as parents to build amazing little humans who will change the world. 

I'm thankful that she also has incredible influences in her friends and supporters. They make her a better, more empathetic person.

Abby participating in her Friday night youth group virtually.

I am so grateful for my two amazing little humans and that God chose me to be their mama. Even when it's hard, it's still a blessing. 

So we'll weather the emotional ups and downs while waiting for more good news and a clearer road map for the next steps and keep you posted. Thanks for your love and support. We wish you well.