100 Days and Onward

Today is day 129 - Nov 13, 2017.  On day 100 - Oct 15th, we stopped giving Sebastian many of his medications which felt really strange at first. All he takes now is acyclovir 2x daily, Septra on weekends only, and an enoxaparin shot 1x daily. We learned on October 18th that Sebastian is cancer free and in remission!!! Yes, you read that right - Cancer free!!! His latest chimerism results showed fighter T-cells are 93% donor cells, myeloid cells are 100% donor, and B-cells are 95% donor! He will be re-checked via a bone marrow aspirate in approx 4-6 months. The bone marrow transplant was a success and we got the best news we could hope for!

He pulled his NG tube out on the morning of October 27th and I didn't tell the hospital, ha ha! We were so tired of having it in, and hardly used it any more, so delayed telling the doctors a few days. I trialled him that day with getting to his fluid requirements by mouth and he was totally fine without it. On his following Tuesday appointment our team were surprised to see it out but completely happy he was still meeting his 1600ml daily fluid intake goal, and we did not need to reinsert the tube. On October 31st his blood electrolytes had balanced out enough that we have been able to lower his fluid intake to approx 1300ml per day. They switched us to bi-weekly visits and if he remains stable, they said he will need only monthly visits now, which is awesome! He has been scheduled for broviac line removal on November 15th! He will be able to have normal baths again!!! And go swimming! This day felt like it would never come and feels like a dream.

Once the broviac line is out we can stop giving Bash his enoxaparin shot. The blood clot in his leg is still there but his body has created new routes around it and there isn't much risk of it breaking free and travelling anymore. He will likely have the clot for the rest of his life and it may only affect him if he plays sports later in life. He can wear compression stockings to help with blood flow if he is symptomatic (ie. his leg swells with physical activities).

For Halloween we all dressed up as pirates. I took Sebastian to clinic for our appointment that day all dressed up and all the nurses and staff loved his costume. This was the first day Sebastian walked around without holding my hand and I literally had to chase him around haha! We took him trick or treating around the bay where we live and he held out his little bucket for candy like a pro, he didn't want to stop and was sad when we brought him home!

We are currently looking into hiring a nanny and transitioning Bash into a day home as I'm going back to work in January. It seems a bit crazy to think we are mostly done treatments, and a bit unfair as many other cancer patients undergo 3+ years of chemo. I'm thankful we have no more chemotherapy, but know that we are far from over. Bash will have many checkups over the coming months and years. He is still at risk for chronic Graft vs. Host disease. And because he had chemo he is also still at risk for secondary cancers later in life, as well as a host of other side effects that may or may not rear up later on.

We have a host of questions to ask our primary nurse at our next appointment about when we are allowed to start taking Bash into public places again, when we can go farther than the city limits, and when we can travel, as well as when we can re-vaccinate, and when it's safe for him to be in contact with other people or even kids at daycares, etc.

In the few months that we've been home full time Sebastian has been developing so much, and so fast it seems. He's grown a full head of hair, learned how to walk, climb the stairs, and gets into everything within his reach. For the most part we are supposed to stay inside and away from public places, outdoors is the only place that's 'safe' as long as no one around us is sick and there are a limited number of people. We get out to the park as much as possible and sneak on the slides if there aren't any kids playing there. On October 21st we went to our first Light the Night walk. It was the first time we had taken him anywhere that crowde, but we were still able to keep our distance from people. We had just found out a few days earlier his 100 day results that he was cancer free and we really wanted to celebrate with others who have battled this disease. It was so much fun! Bash really enjoyed being outside and watching all the people buzzing around and all the dogs too. He is such a friendly little guy and was smiling at everyone and pointing at everything. He got to hang out with his cousin Sam a bit too which was great, and something we really miss doing. We can't wait until we have the all clear that Bash can play and socialize with other kids. He gets so excited when he see's other kids, it's hard to keep him away.

It has been really hard for Nate and I to show our excitement about Bash's progress. Although we are so so very happy, I feel it has been tough to let our guard down. When we first heard the wonderful news from our team that Bash is cancer free, our response was pretty tempered, just 'ok cool, thank you for the news'. When telling family about him being cancer free we got so many happy tears and excited cheers of 'way to go buddy!' and 'we can't believe it!'. We found ourselves wondering why we weren't more excited, and I have realized I'm terrified to accept this as our new 'normal' and then have another let down. Seems a bit silly writing that, and with this realization I am working on trying to let go a bit and enjoy the moment, trying not to worry about the future and what it holds. I am working on being ok without cancer - which is wonderful, but cancer really changed me, changed us, and it's been tough to accept that.

Nate and I have both started to reflect quite a bit as we are coming up on the 1 year anniversary of Sebastian's diagnosis. Planning for Christmas seems to have really brought out the memories from last year and everything we've been through since the diagnosis on December 31st. In many ways it still feels like a bad dream, and I think we are ready to get past this and to finally look forward to life ahead of us again. It has been quite a journey and everyday we are grateful for all the people who were behind us helping to get us through it. It meant so much to us to be with Sebastian and focus on getting him better and we couldn't have done it without our wonderful friends and family.