Cancer journey updates

For an overview of this journey see the timeline.

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Happy Anniversary – Celebration!

April 21, 2024

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

• One year at BCCH
• Gratitude for all of the support and care
• Celebrating that the cancer is stable and more so that Sam is feeling good
• A year in review – milestones of this journey

Enjoying a spring walk together. This photo was taken on Easter Monday and was Sam’s biggest walk in over a year.

It has taken me three four days to write this post. Sam has had such great energy lately. He has been waking up at the same time as me and we have spent our days together – talking, playing, reading, and even sharing the chores.

In the early morning just over a year ago, on April 18, 2023, Sam arrived at BC Children’s hospital. Oh, how far he as come along this incredible journey of seeing him return to health. He is by no means out-of-the-woods yet, but now he can “walk-in-the-woods” with us. Sam is joyful, he has increasing energy and stamina, and his courageous attitude seems to have no limits.

One year ago Tina and Sam had been sent down by air ambulance and were admitted directly to the Pediatric Intensive Care Unit (PICU). I arrived about twelve hours later. Sam remained in PICU for the next number of days while the medical team stabilized him, and initial imaging and biopsies were completed. It would be 10 days later that the biopsy reports were completed and Sam’s cancer was identified. Once identified, we knew we would be travelling a challenging road – one that was not mapped by any procedures or protocols that the medical team could follow.

Gratitude

We have so much to be grateful for throughout this journey (in no way is this quick list complete).

• Sam has received incredible medical care at the BC Childrens’ Hospital and BC Cancer Centre

  • The doctors have pooled their collective expertise having to make untold numbers of decisions based on their professional judgement and not just established protocols.
  • The nurses on the oncology ward and later in clinic have shown Sam (and his parents) incredible care. We will forever treasure the compassion and personal connections that we have had all of you.
  • Access to incredible tools used to diagnose and accurately locate the disease in Sam, and all of the diligent technicians and radiologists.
  • All of the support staff, seen and unseen, that have made Sam’s care possible

• A stranger who provided Sam a new immune system.

• Incredible charities that have supported us

  • The Ronald McDonald House has provided us a home away from home.
  • Canuck Place has advised on Sam’s care and provided great counsel for Tina and I.
  • Friends of Children provides assistance to families from northern BC

• The love of friends and family supporting us. We treasure your visits and communications.

• The hundreds of people praying and caring for Sam – thank you.

Celebration despite ambiguity

There is so much unknown. We know that Sam’s cancer remains. It is unknown if the treatments he has ongoing will be wholly effective.

Despite this ambiguity we celebrate! Currently, Sam is doing well. The last PET scan on April 5^th suggests that Sam’s cancer has been stable! The central mass remains but has not grown and the immune system has been actively working there. The three disease centres found earlier have been neutralized.

More than the state of the cancer, we celebrate that Sam is feeling good! He is gaining strength. He is active and enjoying life!

There is much work to be done but for the time being it seems we are winning – I pray that this is true and continues to be true.

Major Milestones

What a journey this has been. Sam has been through three eras of cancer treatment: 1) chemotherapy, 2) BMT, and now 3) immune therapy. Radiation was given both before the BMT and also concurrent with immunotherapy. Below is provided a quick review of the major milestones.

Chemotherapy

Date	Description
2023
April 17	An alarming x-ray in Prince George provided evidence that Sam needed urgent care at BCCH.
April 18	Air Ambulance in the early morning and admission to BCCH’s PICU.
April 22	Transfer to BCCH Oncology Ward (T8).
April 28	Diagnosis of a extremely rare form of lymphoma.
April 29	Chemotherapy is initiated. Sam will receive an additional 6 full rounds of chemotherapy taking him into October.
June 2	Following his second round of chemotherapy Sam was discharged from the hospital for the first time. This marks the beginning of our family life at RMH. The next months we would visit the oncology clinic regularly. When it was time for each round of chemotherapy we would check into the ward for about 5 days.
July 14	Plans for a bone marrow transplant were initiated. By mid-summer it became apparent that the chemotherapy would not remove all of the cancer. The remaining rounds of chemotherapy would reduce the cancer as much as possible, and keep it from spreading to new locations, while the BMT was being organized.
Sept. 26	Preparations for BMT, baseline testing of Sam was initiated to evaluate impacts of the BMT (i.e. eye, ear, skin, and lung capacity testing).
Oct. 15	Sam completed his final round of chemotherapy.
Oct. 23	Targeted radiation therapy over three days to destroy the central mass in Sam’s chest is initiated. This was completed at the BC Cancer Centre over 10 days.
Nov. 8	Total body radiation is used to completely remove Sam’s existing immune system – to kill the blood producing cells in his bone marrow. This was done to make way for the bone marrow transplant.

Bone Marrow Transplant

Nov. 14	Bone marrow transplant is received. Sam had been admitted to the oncology ward a few days prior in preparation and would remain on ward in isolation for the next number of weeks. This was a particularly intense time as the medical team had to provide so many supports to his body
Nov. 25	First indications that the BMT was establishing – engraftment. Official engraftment would be established on Dec. 1 based on metrics from Sam’s blood.
Dec. 13	Sam is discharged from the hospital with plans to continue regular check-ins at the oncology clinic.
2024
Jan. 11	Stepping down from all of the various medications had its challenges. Sam was admitted to the ward for eight days to determine what was causing his extreme lethargy. It was a complicated picture as we all had a flu in the days prior but what Sam was experiencing was more. In the end the main issue seemed to be adrenal insufficiency.

Immune therapy

Feb. 14	PET scan, that we were all hoping to be Sam’s last before having to go home, revealed a horror – the cancer had spread to three new locations. New battle strategies are brought into play. Plans to return home are canceled.
Feb. 29	Sam receives his first dose of Nivomulab used to intentionally de-regulate Sam’s immune system and to turn off specific protein markers on the cancer cells that allow them to hide from the immune system.
March 11	Targeted radiation starts against the three new sites. The shin and hip sites would see higher doses over four days. The T3-vertebrae would see lower daily radiation doses over ten days.
April 5	PET scan demonstrated that: a) The three new disease sites had been effectively killed using radiation, b) the central mass was stable c) However, a new site in Sam’s liver raised new alarm bells.
April 11	Biopsy of the liver revealed that this mass is not Sam’s original cancer but an indistinct mass that will be monitored.

Victories and concerns

• We celebrate that a year following the start of treatment, Sam is feeling the best he has ever felt. We are incredibly grateful.

• Thankful that the original central mass is stable. Thankful that three disease centers, treated using targeted radiation, have been removed.

• The newest growth in Sam’s liver is not the original cancer though it will be monitored.

• Ongoing immune therapy has de-regulated Sam’s immune system. Side effects are becoming dangerous as Sam’s liver is inflamed. In order to continue with the immune therapy drugs, Sam’s immune system needs to be brought back to a regulated state.

• 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 clear of this disease.

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Support

Become a bone marrow donor

Sam’s life has been saved in part because someone was will to donate their bone marrow. Consider becoming a donor. It is easy – no needles, just a cheek swab that you can do yourself.

Register via Canada Blood Services’ stem cell donor website:

https://makeallthedifference.blood.ca/stem-cells-1/

Perhaps you can save someone’s life!

Note: You need to be between the ages of 17 and 35 to become a donor.

Financial Support

Here we include options to provide financial support including: cancer research at the BC Children’s Hospital, the Ronald McDonald House, Friends of Children (support for families from Northern BC), or to support us directly. We have been blown away by the generosity of so many. We also love the support provided in words of encouragement. Please feel free to send us notes of encouragement. It is impossible to thank you all enough.

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