From Step-down to Stepping-out
It has now been 27 days since Sam received his BMT. The initial couple weeks had big challenges and Sam needed a lot of medical supports. His IV-tower was huge with a dozen lines running at once. In the last ten days that has all changed!
I finally feel like myself again! – Sam
Over the last ten days the team has been continuous reducing the number of medical supports. With one exception all his medications have been converted to pills. Sam has his appetite back and has been eating really well. The tube feed has been there as a back up for a few hours a day but I expect the we will try to stopping it’s use today. All this means Sam is IV-tower free for most of waking hours.
We are also seeing him return to energy. A couple weeks ago it was difficult to cross the room. Now, we are taking laps around the ward. One thing that we will miss is the Sam’s personal cheerleader-squad as the nurses literally cheer when he goes by the nurses station! On Saturday Sam had an afternoon pass – we left the hospital and wheeled over to the Ronald McDonald House. Sam loved the cool fresh air!
For Tina and I, it feels like a massive weight is being lifted. We knew that this time has been hard… but I don’t think we fully understood the pressure we were under. We are now beginning to be able to contemplate returning to home – though that is still a couple months away.
Next steps
Sam has done incredibly well and this engraftment process, so far, has gone smoothly and quickly. It is likely that Sam will be discharged from the hospital later this week – well ahead of schedule (previously we were hoping to get out a few days before Christmas).
Once out life should be simpler. We will be at the Ronald McDonald House (RMH) and visit the clinic 2-3 times per week to check on Sam’s progress and monitor for any Graft Versus Host Disease related issues. Practically speaking this means regular blood-work. Sometime in the weeks and months ahead Sam will receive a PET scan or two to confirm that the cancer has been defeated.
Once out the next major milestone will be Day 100 (past the BMT). This will be the day we should have the green-light to go home!
Victories and concerns
Sam is returning to strength! We expect to be out of the hospital and living back at the RMH later this week.
Sam’s bones are generating new blood! The engraftment process is working! We have seen Sam’s numbers come up and now stabilize!
What an incredible birthday present. Sam’s ANC blood metric went from non-detectable to 0.3. A strong indicator that the transplant is taking hold!
We very thankful for the successful delivery of the donated stems cells! To whoever made this donation I cannot thank you enough.
Thankful that what Sam has experienced so far is within the normal for a BMT and that he has not had any complications. Although it is all in the ‘normal’, it is not all easy:
- Nausea is under control! We have seen the reduction of meds and will be testing removal of some anti-nausea meds.
Impacts from the pre-treatment, chemotherapy and radiation, remain strong. These cause deep bone and muscle pain, along with nausea. These are starting to resolve! - Pain management is under control! Sam is on a regular dose of morphine which he will start reducing over the weeks ahead.
- Nutrition mainly by mouth and I expect the NG tube will be removed in the next few days.
- Energy levels are returning! – it is great to see Sam roam the halls!
- Nausea is under control! We have seen the reduction of meds and will be testing removal of some anti-nausea meds.
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.
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 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.