Prepare for the worst, and hope for the best. I wonder how many cancer families are offered this advice? Almost all of them? Not the kindest of words, but practical, and essentially, our operating principle for the last couple of months. After our last MRI, we were sent home, advised to set up hospice services, and told to make memories. Which we have. You can go home to die or you can go home to live--its largely your perspective while you have a little time. I think I loathe the phrase, go make memories, far worse than prepare for the worst, hope for the best, because it implies finality. It implies that first experiences are also last experiences. Prepare for the worst, hope for the best asks us to be ready for anything. It asks us to roll with the punches. But, more than that, it contains one key word: hope. Even with our grim prognosis, I have never completely given up hope. No matter how small a kernel, how deeply hidden, hope is always there. If I give up hope, I truly give up on my son, and I cant do that. Asking someone to prepare for the worst, however, is a little more ridiculous. Who can truly prepare for the last moments, steel themselves to handle their grief? Grief is grief, and a part of everything making us human. I think every first-time parent goes into their childs room at night, multiple times, just to make sure their child hasnt stopped breathing, comforted by the notion that their fears have been irrational. Cancer parents know it might happen, but we cling to our hope. So, while we have been doing the unthinkable and preparing for final arrangements, I have mostly tried to focus on the hope. He is here now and even on the worst of days when were all frustrated, angry, sad, or just very, very tired, he is here, he is here, he is here. Our Odin. We know the reality is that DIPG does not have a cure, but dammit, were not done fighting yet! We still want to try to kick butt. The medical field is learning more about the disease all the time, and one day a child will be cured. If we can hold out and fight until we know more... Time. More time. And so, Team Odin Baer got a little ray of hope today. Our doctor saw Odin running around on his way to his appointment this morning, a simple port flush, and was amazed at how well he is doing and how healthy he looks. We got vitals. And blood tests. Were going to have an MRI next week to see what is going on. We wont know anything until after the scan, but it could be that what looked like growth was pseudo-progression or swelling. Hope? We are cautiously optimistic. So, for a family that was looking at no further treatment or scans or tests, this is huge! Never Ever Give Up. PLEASE HOPE FOR A STABLE SCAN OR A SCAN WITH SHRINKAGE!
Posted on: Thu, 07 Aug 2014 01:36:23 +0000
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