Best Birthday Present!
Yesterday, Sam’s birthday
By the numbers
While attempting to secretly decorate Sam’s room in the early morning hours Sam’s nurse provided me with the results of that night’s bloodwork – the numbers were exciting. Sam was hoping that on his birthday there would be some indication that the BMT was taking hold. Two days ago the bloodwork hinted that something was happening. For Sam’s birthday the bloodwork numbers were more than we hoped. Our hope was that his ANC, a metric of immune system strength, would hit 0.1. All week it had been < 0.1 (essentially non-detectable) and for Sam’s birthday it jumped to 0.3!
This is exciting news! The numbers indicate that engraftment is happening, that the BMT is taking hold, though it will not be considered definitive until the ANC exceeds 0.5 for a three consecutive days and some additional tests are run.
A great birthday
Sam had a great day. The ANC of 0.3 had everyone excited, the three of us, the nurses, and the doctors, and this set a great tone for the day. Sam’s body is working overtime generating new blood so he rested a lot, pain and nausea have been under control for the last 48 hours.
Sam was able to have video-calls with his grandparents. Thoughout the afternoon, as a family, we loved reviewing messages, and video messages with birthday greetings. The nurses on shift all piled into the anteroom to sing Sam happy birthday and deliver a cake – he was even able to eat some of it! Of course there were presents which Sam took his time opening, reading the cards and enjoying every word written and gift sent. Thank you!
Next steps
We will get more clarity on the next steps in the days ahead. Here is what I currently understand:
We will be watching for the day the BMT is officially considered engrafted (3 consecutive days of ANC \(\geq 0.5\)).
Sam will begin a step-down process as his body heals from the intense chemotherapy and radiation therapy that was used to condition his body to receive the transplant. Currently, he receiving significant external supports: nutrition is being delivered via NG tube and TPN (IV delivery), and he is on a continuous schedule of numerous drugs. In the step down process these supports will slowly be removed, and drugs will be converted to oral delivery.
Over the next couple months Sam will be watched closely for signs of Graft versus Host Disease (GVHD)– essentially that the new immune system does not harm Sam.
We should be out of hospital and back the Ronald McDonald House before Christmas.
Victories and concerns
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 are thankful that Sam has felt the love of his community around him – especially on his birthday.
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:
- Impacts from the pre-treatment, chemotherapy and radiation, remain strong. These cause deep bone and muscle pain, along with nausea.
- Pain management is constantly under revision. Update: We seem to have the right mix. Pain and nausea are currently under control
- Nutrition is received by TPN (IV), NG tube, and minority by mouth.
- Energy levels are low – it is great to see Sam have energy to sit up and play when he can.
There will be ongoing concern as many known and unknown pitfalls that may present themselves during the BMT process. Potential illness, establishment/engraftment of the donated bone-marrow/ stem cells. Numerous other potential complications.
- Update: Sam did have an infection earlier this week. Within about 45 minutes of detection he was on antibiotics and was cleared out quickly. The team here says that this happens to everyone going through a BMT.
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.
We are thankful for all of the messages of encouragement and solidarity that we have received from all of you.
We are thankful that it seems Sam’s pain management is now mostly under control, including options to address any spikes in pain.
It had been amazing to see Sam out from under the influence of chemotherapy. To see him return to strength of mind and to have capacity for more activity. It is hard to see him have this strength pulled away from him.
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.
It is flu season and covid is still out there. If any of us get sick it will add challenges to Sam and the BMT process as he is in a phase where he has no immune system for the next few weeks.
In preparation for the BMT there are numerous items that had to come together:
- Done! Thank you!
Due to some timing and logistics we have had to change donors. We are thankful for this current donor who will provide a peripheral blood sample and is a good match for Sam. - Continuing: We are desiring that side effects both immediate and long-term would be limited. Ideally, that there would be no measurable side effects long term.
- Done!
The medical team has a huge coordination task ahead of them. From our meetings with them it seems all of the pieces are coming together, but with so many moving parts it is easy for things go wrong. - Done! Although it was rough at points the BMT conditioning was successful!
These last days leading up to the BMT are very busy with lots of drugs running all day. Concerns during this time are that everything is able to be delivered as planned and that Sam does not have any overly negative reactions to any of this.
- Done! Thank you!
We are thankful for the support of family and friends.
There is always concern as the cancer remains. We long for the day when Sam is clear of this disease.