Precious Moments
Although a faint glimmer of hope remains we must prepare ourselves for the worst.
I feel the need to be present for each precious moment. Every simple sentence of “Hi Dad”, ”I’m happy”, or “Just resting” is a precious treasure. I want to hold each moment but they too quickly slip into the past and instantly start to fade. I grieve as each treasure slips past me. Oh that I could stop time and live with each one.
Be ready, the next moment, the next treasure is coming. How many more do we get? Do we have weeks? Days? I want a lifetime of them.
We are living in a time warp – time is slow but still moves far too fast.
Looking back
- Sunday
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The oncology team called and asked us to come into the hospital as the fluid that was around Sam’s lung had bacteria in it and he needed to start a round of antibiotics. The truth is we likely would have come in by the end of the day anyways – Sam was having a harder time breathing and was retaining fluid.
Being the weekend we had to enter the hospital via the Emergency Dept. The team there got some initial tests done. A chest x-ray showed that the left side pleural effusion (fluid around the lung) was starting to build up again. Anitbiotics were started.
In the early evening we were transferred up to the oncology ward where we settled in. This place is familiar and the team does a great job of ensuring Sam is cared for. Despite sleeping on the pullout-bed, I had a better sleep than I had the nights before, as we had professional backup in nurses that we knew and trusted.
- Monday
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The main issue being addressed during our days here is that Sam has reduced airflow – definitely influenced by the pleural effusion but this may also be caused by the cancer.
With reduced lung capacity Sam is on supplemental oxygen. Before any procedures are planned for managing the fluid in his chest the team needs to better understand what is causing it. Options include: an infection, or impacts of the cancer (see below). If the effusion is related to an infection the use of antibiotics should start to resolve the issue. If it is caused by the cancer other options may still be available. Determining the cause takes time and so we wait.
Sam rested most of the the morning. In the afternoon he had enough energy to play a video game with me. This is something he had been longing to do for several days but had not had the energy for. We had a great time together saving humanity from massive bugs that threatened future civilization. It was so good to see him be himself for a couple hours.
The remainder of the afternoon was spent talking with doctors, resting, visiting with Gram and Papa C. As a family, the three of us, we have been watching a survival reality show: “Alone”. The experiences of the show’s participants resonate with Sam.
- Tuesday
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Sam rests for the morning each day and as we watch him it seems he is more tired and harder to rouse. Yet we remain in a holding pattern – results are still pending from BC Cancer regarding the abnormal cells found in pleural-fluid. Antibiotics are still running.
Mid-afternoon we had an encouraging interaction as Dr. Jacob came by to check in on Sam. He has a way about him that brings reassurance that Sam is in good hands. We all played a game of Kingdomino – it was great to see strategy-Sam show up. There was definitely nothing wrong with his thinking … once he got thinking.
The afternoon and evening were filled with family including Gram and Papa C, Nana, and Uncle Kevin and Aunt Shannon. Visits are generally quiet as Sam needs to rest.
- Wednesday
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It is Wednesday morning as I write this. Sam has been resting all morning with a simple excursion to the x-ray department. The pleural effusion remains and appears to be slightly worse.
A precious moment from this morning was when both Tina and I simply sat with Sam who was resting. One of us on each side of his hospital bed. Each of us holding one of his hands. Oh how I wish I could make these moments last.
Cancer impacts
Direct
The cancer has grown and it has a choke hold on Sam… literally. It is starting to compress major arteries. It is compressing the Superior Vena Cava (SVC) narrowing the bloodflow into his heart. It is starting to compress the major bronchus to his left lung. All this means that bloodflow and airflow, while believed to be currently adequate, are both being reduced. Further reduction will continue as the cancer grows. It is unknown if current treatment can slow the cancer
Indirect
It is likely that the cancer is causing the fluid to build up in Sam’s pleural space. The mechanism causing this is not well understood other than cancer is known to cause it. The team is considering options to control/reduce the fluid buildup.
Victories and concerns
We are thankful for the simple precious moments.
The cancer has grown (as of Sept. 19th and 3rd CT scans).
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.
- Sam has begun a schedule of oral chemotherapy.
- Nivolumab has been shown to be ineffective and use has been stopped.
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.
Surgeries:
- A surgery to drain/manage fluid in Sam’s left lung (again) is being planned for tomorrow (Sept. 26).
- Surgery to drain the left-side Pleural Effusion (fluid on lung) went well (Sept. 19).
- 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).
Highs, especially for Sam:
- Cedars Grade 11 trip (Sept 8-11): 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.
- 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.