Well, that was not the news we were hoping for.
On Tuesday we paid a visit to our oncologist, hoping to hear that the radiation had taken care of the metastasis. What we were told instead was that Ben does not, in fact, have clear cell carinoma as was believed all this time. Depending on what you read, anywhere from 7 to 9 out of 10 kidney cancers are clear cell carcinomas. So it was a safe bet that the pathology would show that was what he had, which was a necessary diagnosis in order for him to be put into any of the current, local ongoing clinical trials.
As it turns out, Ben has an extremely rare form of cancer called Collecting Duct Kidney cancer. A quick google search will not reveal much – it is that rare. It mostly occurs in African American males over the age of 60. Obviously Ben fits into neither of those categories, so no one could answer “Why???” Just bad luck, we were told. Ya think?
So the bottom line is that there is no clinical trial in which Ben can be placed. Our oncologist just returned from a conference in Europe where the consensus was that Ben should be treated with a form of chemo generally used to treat bladder cancer. Ben decided he would like a few days to digest the news, and so opted not to start immediately but to wait a few days instead so that we could talk to the kids and enjoy the upcoming weekend. That is the plan. And even after receiving that news, this is what My Man looked like:
Always a smile.
We did talk to the kids and explained that the cancer has unfortunately spread everywhere. It seems that it has also caused Ben’s pelvis to fracture…hence all his recent pain. The conversation with our babies went as well as that type of conversation could ever go. Jaime has pretty much not left Ben’s side since and Zak and Raegan are coping as best as they can.
(And on a slightly different note, I will interject here to mention that it was our youngest baby’s 14th birthday this week. Ben presented her with a necklace that reads “Reach for the moon. Even if you miss, you will still land amongst the stars.”
Today we head off to pain clinic to have a conversation about how to best manage Ben’s pain. In addition, we continue to throw everything we have at this disease in the form of fuelling Ben’s body with the best cancer fighting foods. If anyone has the will power, inner strength and resolve to use their mind to repair their body, it is Ben. He just needs a few days to regroup and then get back at it. We will drink dandelion root and green tea, shove raw veggies down our throats until our skin changes color, and we will laugh. Laughter, as they say, is the best medicine. Jokes, anecdotes and smiles are very welcome our way.
To all the Mom’s reading this….help me care for our children’s souls. Help me keep them smiling. Life may not be fair, but it can still be full of love and fun.
Hold your families close. Enjoy the sunshine today. xox