Highs, Lows, and Another Surgery
It has been a roller coaster of a week from some good times with friends, family, and the Driven Project experience to the lows of uncontrolled pain and re-admission to the hospital, and the uncertainty surrounding this distress. Following surgery yesterday, Sam appears to be recovering well, remains in good spirits, and we are hopeful that he can be released from hospital soon.
Highs
This past week started strong. Since my last post Sam was discharged following his successful stent surgery (Friday Aug. 16). We were not sure what to expect following surgery and Sam did struggle with various pains and lethargy. Despite this, through the week we had good visits with family and some big and small adventures. Saturday (17th), Cal, Chris, and Jane were here to visit with Tina and I (Sam was not yet up for visitors). Sunday, Sam had a huge day taking part in the Driven Project. Monday was clinic – news was not great (see below) but afterwards we had an afternoon out exploring new games and hobbies at a couple local shops – it felt almost normal.
By Tuesday Sam was feeling more energetic and we got away from the RMH to visit family in Whiterock. In his good moments (when not resting away from the family), it was great to see Sam join in on sharing stories, laughing, and generally sitting freely with his cousins, Aunt, Uncle, and Nana. That evening Sam and I returned to the RMH leaving Tina to enjoy more time with her family.
Lows
Ack, what a roller coaster this week. Backing up, Monday in clinic Sam’s liver numbers showed a sudden spike upwards. This was confirmed again on Tuesday. Sam had also started battling elevated pains starting back on Sunday evening, making sleep difficult. It was Tuesday night that I was no longer able to keep Sam’s pain under control this was also coupled with nausea. We went to clinic first thing Wednesday morning and the medical team jumped into high gear, taking bloodwork, and setting up various tests (Tina joined us mid-morning). By the end of the day it was confirmed that Sam had fluid pressing on his heart – a Pericardial Effusion. By that point in the day Sam’s pain and nausea were under control (IV meds were far more effective than what I had available), and it was determined to admit Sam to hospital and reevaluate in the morning.
Thursday morning things were looking great! Sam’s heart rate continued to trend downward towards normal levels. It seemed surgical intervention would not be needed and we would spend a further 24-hours in hospital for observation. During this evening, it was a great comfort to have Dave and Krista C. visit.
So many parts of this journey have involved swings. Friday morning we returned to chaos and uncertainty. Sam’s heart rate had been trending towards normal most of the night but sometime in the early morning it started building again - returning to significantly elevated levels.
Surgery & Intensive Care
As I finish writing this post the three of us are in the intensive care. The day has been very intense but we are now in a good place. Mid-afternoon, the medical team decided that it would be safest for Sam to go forward with a surgery to remove the fluid from his around his heart. By 6:00pm he was in the OR where the doctors pierced through Sam’s upper abdomen and then through the pericardial sac to install a temporary drain. The surgery went as planned without any complications – a litre of excess fluid was drained from around Sam’s heart. It was good to have Uncle Cal with us in the anxious waiting.
Sam is a champion. He did the whole surgery under light anaesthetic – meaning he was awake and aware of what was was happening. Apparently he chatted with one of the doctors through the whole procedure reflecting on how great his time at Ness Lake Bible Camp had been.
He is now in the ICU for observation. He is happy, his vitals are much improved, and he is looking forward to playing games with us and his nurse this evening.
Victories and concerns
Sam had fluid around his heart – a pericardial effusion. We are thankful that the surgery to drain all of the extra fluid went well. Sam’s vitals are much improved.
We are celebrate the success of Sam’s stent surgery (see here). The outcome was far better than we had hoped for resulting in a return to near-normal blood-flow!
The cancer has grown and the impacts of the disease are threatening Sam’s vascular system and thereby his life.
Sam is on higher levels of Nivolumab. Side effects of this medication include fatigue and agitation of the liver. In the past we were not able to use this drug for numerous weeks due to liver inflammation. Current support medications are being used to reduce negative side effects.
To date, the medicines and interventions that have been tried have not had any significant or lasting effect at controlling this disease. We need something that will work. We need a miracle.
It was amazing to see Sam join the Ness Lake Bible Camp team (July 28 - 31) . He served, ran, talked, played – he got to be fully there! Many thanks to the NLBC team who welcomed him in.
We are thankful to the medical team here at BC Childrens’ Hospital who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and medical care give us great confidence.
We are thankful for the gift of a place to stay so close to where Sam is receiving his care. The Ronald McDonald House (RMH) has provided us a home away from home. This place is an amazing example of charity at work.
Thankful for friends who have chosen to meet regularly to pray for Sam (we are also thankful for everyone praying for Sam whereever you are). If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
Thankful for such supportive family and friends caring for us all through this journey.
We long for the day when Sam is free of this disease.