Intense Days

regular
results
milestones
The bare essentials from an intense week
Author

Colin C.

Published

September 21, 2024

TL;DR Too long didn’t read (i.e. the short version)
  • The cancer has grown – as determined by CT scan.
  • Immunotherapy is not working and further treatment using Nivolumab is cancelled.
  • Sam has started a schedule of oral chemotherapy drugs.
  • Sam had a pleural effusion and surgery to drain it.

These last number of days have been intense and terrifying. I have limited capacity to write but I will provide the essentials. As such, many of the details, decision making steps, and personal thoughts/responses, have been left out.

Medical situation

We had hoped that Sam would be able to continue with his immunotherapy with another dose of Nivolumab this past Wednesday. However, this did not and will not happen.

Sam had mild symptoms of larger underlying issues over last weekend. The underlying issues would emerge over the following days.

Monday

At clinic Sam’s numbers (blood and liver related metrics) were looking fairly ‘ok’ and we returned to the RMH.

Tuesday

In the afternoon, Sam had a bleed that took some significant time to stop. This, coupled with his increased fatigue and pains, gave us clarity that we should take Sam to the hospital to be looked at. The three of us spent the rest of the day in the ER while various tests were being conducted and various doctors were consulted.

An x-ray taken during the ER visit highlighted that Sam had a left side pleural effusion (fluid around the left lung). Given that RMH was so close to the hospital, and the situation was not immediately urgent, and that we had a clinic visit already planned for the morning, we returned back to the RMH for the night.

Wednesday

Once at clinic, Sam was sent down for a CT scan to confirm the extent of the fluid on his lung to provide the Interventional Radiology (surgery team) the information that they would need to drain it. We took a couple hours off before returning to clinic and hearing the results of the scan and next steps.

Scan results – major pivot

  1. The cancer had distinct measurable growth since the prior scan on Sept. 2.

  2. This new and unanticipated evidence told us that immunotherapy and the use of Nivolumab were not effective at controlling Sam’s cancerous disease.

  3. Surgery to drain the effusion was scheduled for the following day.

Thursday

Back to clinic again. Sam’s doctor has a plan for managing Sam’s cancer. It was a relief to know there would be a plan – though specifics would not be communicated until Friday. The doctor was also clear – it is not known if this new plan/treatment will work.

From clinic we went to surgical procedures where Sam had his left lung drained of fluid. This was without sedation – local aesthetic only. The team took one litre of fluid off of Sam’s lung.

Friday

Again in clinic. We reviewed the plan for the management of Sam’s cancer – a return to chemotherapy. He will be offered similar drugs as he was treated with originally. However this treatment differs from the original as the drugs will be oral – this will not hit him as hard as previous chemotherapies. The intent of keeping this new mode of therapy with generally light impact is two-fold:

  1. To protect his already compromised immune system
  1. To allow the medical team to more readily switch/adapt treatments as they monitor him.

This became one our longest clinic visits. Sam had low phosphate levels and required an IV infusion to boost him back up. The IV infusion took ~7 hours and it was not started until almost 3:pm. We spent the evening on the ward as we were there well past clinic hours.

How are we?

Exhausted, scared. To be honest, I cry a lot. Tears will spontaneously hit me and they flow freely when they do. When the emotion comes it almost knocks me over. Generally, I am not able to leave Sam alone for more than 10 minutes at time without my anxiety nagging me to get back to him.

Sam remains courageous. He has moments of sharing fears and these have transformed to precious times of the three of us sharing together. He is tired of being tired. He is looking forward to feeling better and wants to do so many things.

Support and moments of relief

We have had moments of relief, of joy, and hope. These have been varied:

  • Precious moments that Tina, Sam and I share.
  • Visits with friends and family. We were blessed with the love of numerous people visiting here this week.
    • Gram and Papa C. arrived on Wed. night
    • Uncle Dave and Aunt Ruth
    • Janelle and Nova
    • Dave and Rhoda
    • Rose and Nael
    • Aaron W.
  • Many friends who have emailed and texted their support.
  • Our family in the area are waiting for a chance to get in to see us.

Victories and concerns

  • 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:

    • 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.