Sunday, August 26, 2018

Summer Lovin

What a crazy summer it's been! Time has flown by. Hard to believe it's almost over! I feel like we did so much yet nothing at all. With all the smoke from the wildfires there have been some days we had to stay inside, which was hard as Sebastian loves to be outdoors. Our usual bike rides have been delayed or cut short as we have all been bothered by the smokiness. Bash got his first shiner, had a run in with some lawn furniture, not even a good story haha. On the July long weekend we had a family reunion in Loreburn Saskatchewan on Nathan's grandparents farm. Bash is such a great little traveller, we only had to stop twice! He was up late almost every night and we threw him right off his normal schedule. We were back and forth between Saskatoon and Loreburn and he was such a trooper! It was so good to see him interacting with his great grandparents and playing peek-a-boo with his 98 year old great grandfather! We got to see so many family and friends that we hadn't seen in over a year, some people who had never even met Sebastian! We also got to meet our new niece Nova, the sweetest little girl who Bash loves! We spent the week visiting and getting to sleep in -thanks grandparents and auntie! Then we had another fun weekend at the annual ball tourney which last year was the weekend the fundraiser was held for Bash. We had a giant cake to celebrate Sebastian's one-year 're-birthday' and we all had a blast!

Bash had his 4th round of re-vaccinations as his bone marrow transplant wiped out his previous vaccinations, so he is essentially starting from scratch. Bash then caught a stomach bug and even though I was super diligent with my OCD cleaning, I caught it too, uhg. We ended up renting a carpet cleaner once we were feeling better because there was literally puke everywhere! Then our day home went on vacation and Nathan's dad came to stay as our live-in nanny for a couple days - Bash was over the moon to have 'baha' (as he calls him) stay with us and soaked up every minute. We also had family from Red Deer meet us at the zoo one day and Bash got to play with some of his cousins. Bash also had a dentist appointment where he had his teeth cleaned for the first time - he wasn't super thrilled with the cleaning bit but was a champ and did awesomely! He got a clean bill of health, no cavities! One side effect of chemo the dentist reminded me is that his permanent teeth may never come in or be delayed so we need to take extra care of his baby teeth.

To top off our super fun summer, I have been sitting on some pretty exciting news, been so busy, and just have not had the time or been able to write about it. I'm totally afraid to jinx it, afraid to let my guard down in the slightest. Anyway, let's not keep you waiting any longer. Sebastian's latest chimerism results came back July 18th as stable!!! His myeloid cells were 90%, up from 84%, T-cells 96% up from 93%, and B-cells 56% up from 55%. It's not a lot, it's a small increase, but we are elated all the same - even though we haven't shown it. It's been very hard for me to process everything and show my emotions, I never want to drop my guard down. Sebastian's doctor even seemed reserved and our primary nurse had to explain to us that a big smile like that on his face is the best thing you can get!

We went ahead with a 5th boost on July 27th to help those numbers to keep increasing. It was the first boost we were not admitted for. Everything was done in a private room in the clinic. We arrived early in the morning, Bash had two IV's started, thankfully they were both a breeze and he was not poked multiple times as has happened in the past. He had some pre-meds and some hydration and then the boost was given around 1pm. The boost was an increased amount from the previous ones, and yet still fit into a 10ml syringe and was given in under two minutes. He then had post hydration for a few hours to flush any preservatives from the product out of his system as they can be hard on the kidneys. We had a visit from the music therapist which Bash loved. We were finally sent home around 6pm.

Bash had blood-work drawn on Aug 17th and chimerism results take approximately 2-3 weeks. If his numbers remain stable and/or increase we may not need to do his 6th boost and will just wait and see. If his numbers have dropped then our doctors will most likely do a bone marrow aspirate to check his numbers at the very base, and then a 6th boost, the last one Bash will get. We should get results this week sometime. Thanks for all the love and as always please keep us in your thoughts and prayers.