Milestones

Modified

October 17, 2024

Generally speaking, Sam went through three eras in his cancer treatment:

  1. Chemotherapy,
  2. Bone Marrow Transplant,
  3. Immunotherapy.

Radiation was given both before the BMT and also concurrent with immunotherapy.

Below is a 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.

Immunotherapy

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.
April 21 Five day break – home! Two days of travel and three days in Prince Family, school, quick visits with friends, and an initial connection with the local medical team.
May 8 PET Scan #3 indicates that the central mass has grown confirming active disease.
May 15 All immune suppressants have been removed and we wait to see what Sam’s new immune system can do.
May 22 Contrast CT Results suggest that the cancerous mass is stable.
May 29 Ten day break home! As liver numbers remained stable and there was no significant change in the cancer from the previous CT it was was deemed safe to make a trip home.
June 12 PET Scan #4 (since BMT) Results indicate that the cancer has grown approximately 1cm in each direction and that two lymph nodes in the area may now be diseased. The BMT is not enough to combat the cancer.
June 21 & 26 Immunotherapy medications were started.
Nivolumab on the 21st and Ruxolitinib on the 26th once it became available.
July 4 MRI of Sam’s chest was completed. The primary purpose of this scan was to provide detail if surgery is ever to be considered.
In addition, the cancerous mass was evaluated. On June 5th we were told that the mass had not grown.
August 2 & 6 A PET scan was completed on August 2. Results were not available until August 6.
PET results indicated significant growth of the cancerous mass. A further contrast CT was completed on August 6th to evaluate how the mass was impacting the heart and general bloodflow. The disease has now resulted in blockage of both the left and right brachiocephalic veins. Sam has an extensive network of collateral veins (smaller vessels that allow blood return from his head to bypass these blockages). Additional concern has been raised that disease impacts are beginning to restrict flow in the superior vena cava.
August 15 Stent Surgery
The interventional radiology team was able to restore blood-flow through Sam’s left brachiocephalic vein and install a 10mm x 80mm stent to ensure that the flow remained open (see: A Surgery to Celebrate!)
August 21 & 23

Pericardial Effusion
Went into clinic on the 21st Sam’s resting heart rate was 120 bpm. Tests identified a significant amount of fluid around Sam’s heart (i.e. in the pericardial sack) – enough to limit heart function.

On the 23rd, following a day of deliberation the team moved forward with a surgery to piece the pericardial sack an drain off all the extra fluid.
Sept 3 CT scan shows that the cancer has grown again. However, it is plausible that the immunotherapy was able to slow the disease before delays as Sam had to recover from his surgeries.
Sept 4 Continued immunotherapy with the next dose of Nivolumab.
Sept 6 - 9 Cedars Grade 11 – YWAM trip
Sam had an amazing time connecting with his friends/classmates as his class came to Vancouver to serve.

Last Days

Sept 18 & 19

A CT scan highlighted:

  1. The cancer had grown. Further treatment using Nivolumab is cancelled as it has now been demonstrated to be ineffective and side effects are dangerous.
  2. A pleural effusion (fluid on the lung) was identified. The effusion was drained on Sept. 19.
Sept 20 Sam is started on an oral chemotherapy. In effort to provide some level of control.
Sept 22 We return to the ward. Bacteria had been detected in the pleural space and antibiotics had to be started. Tina and I were also seeing a decline… it is likely we would have taken Sam in by the end of the day.
Sept 27 Sam has his left lung drained a second time. Analysis of this fluid will later show that the cancer is in the pleural space.
Oct 8 at 7:10am

Our loved mighty warrior died.

Tina and I were with him. We watched his final breath.