Ben was officially started on hospice care a couple of weeks ago. The last oral chemo he tried didn’t work, i.e. it didn’t touch the cancer that has been spreading throughout his body over the last couple months.
He started a new oral chemo but that’s already been paused due to it suppressing his platelet counts, which are in the tank already.
Where do we go from here? We’re all not sure just yet. There is still the possibility of going out to Seattle Children’s for their CAR-T trial but Ben may not qualify for that due to low counts. Not to mention his kidneys are working at minimum capacity. Low counts and bad kidneys mean the treatment options are even more limited.
Also, due to Ben being on Medicaid we’re in a holding pattern with Seattle Children’s as they try to reauthorize with CO Medicaid, which could take a lot of time Ben doesn’t have. Were we to go to Seattle without insurance they kindly offer a pre-payment option for the trial. That only costs $100,000 up-front. That’s not a riff on the hospital, these drugs and trials are expensive, but Holy Moses, nobody can afford that kind of out of pocket expense. Well, at least not us.
We’re all struggling. Maddy, Sarah, Ben and myself. Being at this point in Ben’s life, 14 years of fighting, I don’t know that any of us truly considered what it would be like to actually be here.
Hope is a funny thing when you’re faced with an end of life scenario for a loved one. Those of us that believe in an afterlife find a minimal amount of comfort in knowing that the pain will cease here and our loved one will be whole in Heaven. (Valhalla for you Viking aficionados.) However, there still is the all-too human feelings of grief, especially as you know the window is closing and you only get to sit back and watch.
As parents, we’re doing all we can to prepare both kids for the possibility the Ben may not be here. That sucks. It’s heartbreaking. It’s overwhelming.
Please continue to pray for our family as we face this latest battle. Ben is determined to fight and we, his family, will fight alongside him to the end. That is all we can do for now.