Soul Filling
A full week
It has been a good week. Sam’s classmates from Cedars Christian School were here and Sam was able to join them a number of times. Time with his friends was such an encouragement to Sam – and to Tina and me.
Times with classmates!
This past Sunday evening the Cedars Grade 11’s rolled into Abbotsford. We were able to join them there – sharing a meal at the Old Spaghetti Factory. After dinner Sam hopped on the bus and experienced a glimpse of the fun had in transit. In Vancouver, near Commercial and Hastings, the crew moved into a local church that would be their home away from home. Sam had a great visit that evening before the three of us returned to RMH.
I am so thankful to Cedars and the hosting YWAM team as they always welcomed Sam and were able to allow Sam to join in as he had energy.
I am incredibly impressed with YWAM’s Mission Adventures program – it is really well designed, and their staff did an excellent job of leading the students through all the activities. I am also incredibly impressed with the Cedars team (staff, parent chaperones, and all the students!). They all served, and engaged one another and all the ideas presented to them really well – through some very full days and intense topics.
- Monday
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Students were split into small groups (3-4) to experience two sides of Vancouver. The east is in the throes of poverty, addiction, and common mental health issues. In stark contrast, mere blocks to the west, the business district is characterized by affluent wealth seemingly ignorant to the challenges in the east.
Sam was able to join this day for a couple of hours. He spent over an hour walking – more than he has done in long-long time. He loved sharing this time with classmates, interactions with the people, though this large energy output had consequences. Days later Sam is still trying to restore his energy reserves.
- Tuesday
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Students served at a number of different ministries assisting the east-side community during the day. In the evening YWAM led the students through a seminar presenting the issues of pornography, sex trafficking, and highlighting the links to violence against women – intense yet important topics. The reflective work for these topics were set into the context of a prayer vigil.
Sam was able to rally energy to join the students for their evening meal (Jamaican) followed by the evening session back at the church. It was a privilege to see the students continue to work through the material after the session. They got it. They wrestled with it. They cared.
- Wednesday
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Students experienced other cultures through their religions touring a Mosque, Buddist, and Sikh temples.
Sam had clinic that morning and was still recovering from Monday’s walk, so he was not able to attend the temple tours. Later in the day, following a solid nap, Sam had enough energy to connect with his class once again. First, there was dinner out (Indian), then it was back to the church for a debrief session.
It was during this debrief session that Sam’s classmates pressed in around him, and took time to pray for him. … It was simply beautiful to experience the love his friends poured out to him.
To end the evening the whole group walked to get ice cream – gelato. Thirty kids-in-a-candy-store (including adults) as we tried to decide what 2 of 238 flavours to choose from!
- Thursday
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We did not get to see them off but the students packed up and started their trip home to Prince George.
Sam woke up that morning expressing how he has such a great life. His heart had been filled. He experienced and knows that he is loved.
Additional connections
Love extended to our family was not limited to the Cedars group. Since our last post Dave and Rhoda, Nana, the Frickers, and Uncle Cal have all been able stop in.
Sam has also had on his heart to extend care to another young man who is currently at BCCH1 and is expected to undergo a BMT in the weeks ahead. Sam has initiated stopping by to encourage him a number of times in the last couple of weeks.
Medical status
There has been so much beauty in the interactions that we have had this past week.
These interactions have been full of loving-friendship/care and have not failed to acknowledge that Sam’s journey is so challenging.
The previous week Sam was able to have another dose of Nivolumab (Sept 4) – continuing with his immunotherapy. Given the intensity of the events in August the medical team is keeping a close-eye on Sam. By the end of today Sam will have had four clinic visits and two echocardiograms since the last post. To date the clinic visits have been good/simple and without any drama.
Is the immunotherapy working?
This is a common question that we receive and it is a very important question.
However, it is not one that I can answer – at least not yet. It is not possible to monitor the development of Sam’s cancer on a daily or even weekly basis. We have to wait 3-4 weeks before we can evaluate if the treatment is working.
To-date, since reaching theoretically therapeutic levels of Nivolumab, Sam has not been able to have uninterrupted treatment without other complications causing delays. One of our current hopes is that we will be able to continue with immunotherapy treatment without interruption, so we can have a proper evaluation if the immunotherapy is working.
So we continue to wait and we continue to do the hard work of hope.
Victories and concerns
Our soul-hearts have been refreshed! Filled with the love of friendship. It was incredible to see Sam have time with his friends from school. The students and the leaders from Cedars have lifted/blessed all three of us.
The cancer has grown (as of Sept. 3 CT scan).
To date, the medicines and interventions that have been tried have not had any significant or lasting effect at controlling this disease. We need a miracle.
Sam is fighting on despite continued growth of the cancer. He has continued with his immunotherapy – had another dose of Nivolumab (Sept. 4). It is our hope that 1) The therapy will be effective, and 2) That there will be no further complications that could restrict the use of the drug.
Waves:
Despite times of encouragement the waves of fear still hit us (Tina and I). It remains hard to watch when Sam is in pain or lacks capacity – this is where hope takes work.
Our energy levels, or lack of energy, come in waves. Sometimes the waves are strong enough to knock you over. We need strength for this journey.
Sam’s heart is healthy and strong despite having had fluid around his heart – a pericardial effusion. We are thankful that the surgery to drain all of the extra fluid went well (Aug. 23). Recovery from this procedure was challenging but Sam has made it through again!
We are celebrating the success of Sam’s stent surgery (Aug. 15, see here). The outcome was far better than we had hoped for resulting in a return to near-normal blood-flow! (for that particular major vein).
It was amazing to see Sam join the Ness Lake Bible Camp team (July 28 - 31) . He served, ran, talked, played – he got to be fully there! Many thanks to the NLBC team who welcomed him in. When Sam needs to think of a happy place he returns here in his mind and he is quick to share stories of these days.
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. Sam has never lacked for incredible care.
We are thankful for the gift of a place to stay so close to the hospital. 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 (we are also thankful for everyone praying for Sam wherever you are). If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
Thankful for such supportive family and friends caring for us all through this journey.
We long for the day when Sam is free of this disease.