Merry Christmas

regular
post-BMT
Much to be thankful for!
Author

Colin C.

Published

December 24, 2023

Merry Christmas everyone! We have so much to be thankful for!

I came so they can have real and eternal life, more and better life than they ever dreamed of.
— Jesus (John 10:10, The Message translation)

Sam is doing great! Since the last post he has continued to gain strength. We have a long road ahead of us but it seems we are on the path towards home and the return to friends, family, school, and work there.

The past days

Sam and I walking from the RMH to the hospital for a clinic visit. This was the first morning Sam did not need to ride in the chair (Dec. 22nd)!
  • Sam continues to have regular visits at the clinic. Various blood tests are done each time. One specific, the team looks at Tacrolimus levels, an immunosuppressant used to ensure that this BMT is successful and that any graft-versus-host-disease (GVHD) is minimized. Note: some GVHD is needed so that the new immune system continues to attack any remaining cancer.

  • Exciting news! The genetic testing of Sam’s immune system confirmed that the donor cells have fully replaced Sam’s native immune system. Ideally, in a BMT transplant the native immune system is removed to make way for the donor cells. There is always a chance that some native cells remain and that a battle for dominance can occur. For Sam, the BMT has gone as planned and all new blood is being generated by the donor cells.

  • All of the blood tests have shown Sam’s counts have come up and are stabilizing.

  • I have debated including this next thought … especially during Christmas. It is a challenging reality (skip it if you need to).

    or click ‘Read’ above

    Christmas at the Ronald McDonald House is amazing but strange – layered in hope and pain. There is so much generosity poured into this place you cannot help but feel cared for.

    During these last months, as we have weathered this cancer storm, we have also walked beside a number of other families in similar circumstances. Some are looking forward to completing treatment, while others are in the thick of the storm. Another family, is having an incredibly hard Christmas. They have reached the end of possible treatments and recently moved to hospice to spend what days remain with their child. Our hearts and prayers continue to go out to them.

    Here at the Ronald McDonald House joys and pains are especially visible. For me, this raises an inescapable question for life at home. If your Christmas is full of joy, and I truly hope it is, are there pains that may be close but remain unseen? Is there a way to demonstrate love and generosity into those situations?

  • Some good normal life has been happening.

    • Sam has had energy to enjoy reading. He finished The Hobbit earlier this week and immediately got into another book.
    • Nana was able to visit and help us prepare for Christmas.
    • We were able to get off the hospital campus and visit the Frickers – with more family visits planned over the holidays. So great to play family games… this year games also includes some VR which actually has been an amazing physical rehabilitation tool.

Upcoming

  • What a special Christmas this will be! We have seen Sam through a long and challenging journey and it seems we are on the other side!

    What do I want for Christmas? I already have it! My son is alive! And not just alive, he his beginning to thrive!

  • In the weeks ahead there will continue to be regular visits to the clinic as levels are check at medications are adjusted.

  • Numerous scans and tests will start in the new year to evaluate if there have been any internal impacts in Sam’s body. This will also include scans to determine if any disease remains.

Victories and concerns

  • Sam has completed his critical post-transplant period. He has now been discharged from the hospital! We will remain at the RMH for the next two months in order to monitor for potential GVHD complications.

  • Sam continues to regain strength. He is now able to walk from the RMH to the hospital.

  • New blood cells in Sam’s body are all from the donor! Sam’s bone marrow is pumping-out/generating new blood! The engraftment process is working! We have seen Sam’s numbers come up and now stabilize!

  • Sam will still be considered immune compromised for the months ahead and mostly susceptible to viral infection. It remains to be flu season and covid is still out there. We must continue to be vigilant to protect Sam.

  • We very thankful for the successful delivery and engraftment of the donated stems cells! To whoever made this donation I cannot thank you enough.

  • We are thankful to the medical team who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and care give us great confidence.

  • 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 are thankful for all of the messages of encouragement and solidarity that we have received from all of you.

  • There is always concern as the cancer remains. We long for the day when Sam is clear of this disease.


In case you missed it

On Dec. 12th Santa paid a visit to the BC Children’s Hospital. Sam was able to welcome him onto the oncology ward. Tina and Nana Mary (1:03) were also able to meet him. Tina did an amazing job of sharing what this Christmas means to us (starting at 1:13). The original news article from the CBC is linked here.