Honestly. I just do not know where to begin for this update. Which is why it has been a few days.
Nearly 3 weeks ago we left Ryan House with Sammy to go home, at his request. Home until we could not handle the care of Sammy on our own. We left Ryan House preparing for Sammy’s end of life. For our final time with Sammy. Three weeks ago, we were told that Sammy had days, maybe a couple weeks at most. But here we are three weeks later. We honestly never expected Sammy to still be here with us at this point in time. We hoped for his sake, and ours that his decline would be fast. But that is not the case. He is declining in a way that is shocking everyone on his team. Sammy is in control. And he is doing what he does best. Leaving us in wonder.
We have had several days in the last week where we thought it was close. But then he would turn a corner and things would improve. We came here on Easter preparing for things to go quick. Less than 48 hours. But here we stand with Sammy still fighting. Fighting till the very end. Because of this we have more questions than answers. We are uncertain of what is truly happening in his little body.
With hydrocephalus, we expected him to decline rather quickly. And certainly not have ups and downs. We are curious if the hydrocephalus self corrected, or if the drain has allowed fluid out once hitting a certain level. We really have no way of knowing. Yesterday, we spoke to our team, as we have so many questions. At the end of it all, Sammy is in control. And we just have to keep listening to his body. But he is showing us things that leave us wondering. So yesterday we asked what if he is improving? How would we know? Can we do another MRI to see what is happening? See what both his hydrocephalus and disease progression are doing?
So we started a new plan. We are starting to taper Sammy’s medications to see what he can tolerate. To see if anything is even worth it. Because even if a scan shows something positive, he has to be able to function and ultimately have quality of life until it is time. Unless miraculous healing has occurred, Sammy is terminal. There is no cure for his disease. And we assume his disease has progressed in the last month since his last scan. As that is the reality of his disease, his cancer. Our timeline just may be altered. We have no idea. So yesterday afternoon we started the taper, to see what happens. We reduced his dilaudid by 10%, and will continue to do so every 24 hours. So far we have decreased from 6mg per hour to 5mg per hour. We have also been able to limit the bolus (on demand) amount we were giving. We have a long way before we really see how he does.
Last night we had another wrench in this plan. Sammy started having fevers. He held at 102.4 for over 12 hours, and has fluctuated in the 101 to 102 range most of today. Fevers can be from a number of things. Infections, neurological, withdrawals. The most logical is neurological change, which can be another end of life sign. So we just have to continue to watch and wait.
Please continue to pray for Sammy and our family. We really are unsure of what our path looks like at this moment. We know that we are in the final time with him, but unsure of how it will look. Everything is a question at this moment and no one has the answers. Sammy is not like anyone else and he will continue to surprise us all throughout this process.
Please pray for Sammy. Pray that he is surrounded by peace and comfort. That he feels safe in the space around him. Pray we are able to see changes as we make adjustments and make the right decisions regarding his care. Pray for us as we handle these changes. We are in a state of limbo and unsure of where we really stand with Sammy’s care. Pray we have the strength to hold together through the time ahead, whether days or weeks. Pray for our marriage. That we can come together during this time of struggle. Pray for Logan as he is faced with so much emotional turmoil. Pray as we figure out how to explain what is happening with Sammy in a way that he can understand. Pray for our family that is visiting and traveling to spend time with us during this time. Pray they are able to be understanding and supportive in the way that will serve us the best. Pray for us all as this journey is still full of so many unknowns and as it continues on. Our hearts are heavy. We are in a very emotional place, especially with the rollercoaster ride Sammy is taking us on. We want what is best for him. We want his suffering to end. We want him to be free. We want this because we have HOPE and FAITH. We know Sammy will be free in heaven. That he will be fully restored, if that is God’s plan for Sammy.
Photo captured by Shawna Wolf Photography