Home Again

We are tentative, but it is starting to feel like a pattern to life seems to be starting to emerge.

TL;DR Too long didn’t read (i.e. the short version)

• We are home again! We got home on the 23^rd following a short medical trip to Vancouver (July 18 - 22).
• Sam has successfully received his latest dose of Nivolumab and his body continues to tolerate this set of medications.
• Sam is scheduled for a PET scan on August 2^nd.

Enjoying some hours at Crescent Beach! Great visit with Nana Mary and the Frickers.

I can understand it if you were feeling like you were missing our on our lives and wondering what is going on – it has been over two weeks since I last wrote.

In that time we were at home, travelled to Vancouver, and returned home again. During our times at home, we had some good visits with a number of our friends here, and I started to feel that I was maybe beginning to recover from burnout. Sam, of course, despite often feeling physically exhausted from it all, continues to be amazing, maintaining his positive attitude throughout this long journey.

Looking back

Most recently, last Thursday, July 18, we made a roadtrip down to BC Children’s. We chose to drive as it allows for more flexible timing and gives us some freedom while there. On that Friday, there was a minor question-mark related to some of Sam’s bloodwork and the team chose: to adjust some of Sam’s supporting medications¹, and to wait out a cold that he had.

Over the weekend we were able to have a visit with the Frickers and Nana including a nice afternoon watching the tide come in at Crescent Beach.

The next Monday Sam’s cold and bloodwork had improved and he was able to receive another dose of Nivolumab. In addition an echocardiogram showed that there were no significant negative impacts on Sam’s heart. Despite not leaving the clinic until 4:30 that afternoon we decided to start our trip home. We made it to Kamloops that night and the rest of the way on Tuesday.

This last trip down marks our shortest visit to BC Children’s Hospital and the Ronald McDonald house. It is our hope that this will become a more normal pattern. Yet it is too soon to discuss patterns or plans for life.

Looking forward

On August 2^nd Sam is due back in Vancouver. We will spend several days there as he is scheduled for a PET scan, an ultrasound, and another dose of Nivolumab.

In the meantime we have just over a week at home. We are loving it here – however in some ways it is a strange adjustment (including not having Tina’s parents here). Many thanks to whoever mowed our backyard! In this time we will celebrate birthdays, I will get to work for some part days, and we hope to continue reconnecting with our Prince George friends and family.

Victories and concerns

• Sam’s immune therapy plan continues to move forward. Following three doses of Nivolumab Sam has not had any severe adverse side effects!

• Results from the July 4^th MRI indicated that the cancer mass in Sam’s chest has not grown!

• Thankful that we can look ahead a little and that we can be home again!

• We are thankful to the medical team here at BC Childrens’ Hospital who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and medical care give us great confidence.

• We are thankful for the gift of a place to stay so close to where Sam is receiving his care. The Ronald McDonald House (RMH) has provided us a home away from home. This place is an amazing example of charity at work.

• Thankful for friends who have chosen to meet regularly to pray for Sam. If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.

• We long for the day when Sam is free of this disease.

Footnotes

1. Supporting meds being the switch from prednisone to hydrocortisone for increased adrenal support. Note that weaning off of prednisone seemed to not provide enough adrenal support, including support to effectively battle the cold he had.