To the Ward and Back Again
Looking back
Last post I wrote about the viral illness that Sam had, and the removal of some steroid supports that he had post BMT. He was making slow progress recovering from it all.
On Jan. 11 we went in for a clinic appointment with the Endrocine team. However, they were not fully satisfied with how Sam responded to the treatments they initiated … unexplained low blood pressures tend to send off alarm bells for physicians. So we went up to the oncology clinic to let our regular medical team evaluate Sam and consider his situation from their perspective. The team there decided to admit Sam to the ward. I confirmed later that this was due to a number of small flags that went off for them – if any one flag was presented they would have sent us back out. However, whatever was going on with Sam, though ambiguous, added up to be significant enough to be admitted.
Over the next few days we saw very little improvement but then he started to come around. There were a lot of question-marks about what was going on with Sam and when we asked “What is going on with Sam?” the answer was”We don’t know.” Various tests were run and general treatments were provided.
The nurses called it being in for a ‘tune-up’ and they reassured us that it was very normal for someone, following a BMT, to come back to the ward for whatever was ailing them. The idea of a tune-up is not a bad analogy though it felt more like a major tune-up – like Sam was only running on 1 or 2 cylinders.
Sam started feeling better following about five days of treatment (fluids, antibiotics, steroids), and by day 8, this past Thursday, he demonstrated he was strong enough to leave the ward. We are now back at the RMH.
Ughh. All of those days of illness, including the 10 days prior to being admitted were hard. It is the not knowing: What is happening? What is the problem? Will we find a solution? Is this the cancer? To complicate things, especially for Tina, was the fact that she still had bronchitis, because of this she was not able to spend much time on the ward with Sam and I. I am thankful that Nana Mary was able to be with her during this last time on ward.
Looking forward
In the weeks ahead we will need to keep a close eye on Sam’s energy levels. We have been given some flexibility in managing steroidal supports (e.g. in response to illness or injury). So if we see his energy fading we can pump him up a little. The steroids are intended to mimic natural bodily levels, as given the previous BMT related treatments his body is not yet generating natural responses – this is all expected (by the doctors). It is also expected that Sam’s own hormone balancing system will restart after a month or two. Again we wait and hope.
I can’t help but remember that when we were learning Spanish, in our days working in Guatemala, that verb esperar means to wait, and it also mean to hope (the noun for hope is la esperanza). So when we say we wait – I also mean we hope. Of course, hope itself is a choice. In many ways it is a choice to expect the good and to actively reject living in anxiety. This is more than a psychological trick. Our hope and trust have true foundations. I have hope because of our incredible medical team, and ultimately we have hope in God.
Medical plans
This week will be a return to regular clinic visits. We will also start a repeat of all of the baseline testing that was done prior to the BMT. This will involve visits to all of the specialties in the hospital, and various imaging tests to evaluate if/how this whole BMT journey has impacted Sam.
We will also continue weaning the various drugs that Sam has been on – primarily reducing morphine levels.
Victories and concerns
A concern for Tina and I is that it is not always easy to choose hope. The reality is that choosing hope is a discipline. Given everything that we as parents have gone through, including all of the alternate outcomes that we have seen, it is very easy to slip into anxious thinking.
We are no longer having medical discussions about upcoming treatments. Discussions are now about weaning medications, removing the central line, completing baseline tests for comparison with the pre-BMT testing, and preparations to return home!
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.
There is always concern if the cancer remains. We long for the day when Sam is clear of this disease. A PET scan will be done in February to evaluate how the cancer has been impacted by all the treatments. The expectation is that any remaining cancer, following the chemo and radiation therapies, will be removed by the newly transplanted immune system.