Like a record, baby…

The merry-go-round keeps a-spinning, friends. I feel like 20 years have been packed into the last three days. Good thing my skin didn’t decide to time warp along with my brain. I’d SERIOUSLY need that face lift STAT!

Okay. So. Last you heard, the “Ben – AKA ‘Matty Bear’ – information sharing disaster” was in its infancy. Over the past two days (with some serious sleuthing on Matt’s part) we’ve gotten some very helpful information and are receiving assistance from the law. I wasn’t sure if they’d be interested in helping us because we are just one needle in a haystack of many. Who cares, right? But, apparently, they do. Mostly because this heinousness happened to a vulnerable child. So, people who have had this happen to you, there’s hope. The authorities are VERY interested in crimes like this. They are ON IT! So, hopefully this will be one less thing we’ll have to worry about.

But what I really want to talk about – and what deserves to be discussed – is the fact that Ben shows NO EVIDENCE OF DISEASE. His latest scans occurred last week and they made the statement that his disease remained STABLE. To me, that says that there is still disease in there but it hasn’t grown or spread. So, I called to clarify. I explained that it was my understanding that they took out the entire tumor during surgery. There shouldn’t be any disease in there right now. So, when they didn’t use the terminology of No Evidence of Disease (NED) I was confused. I thought maybe it didn’t all come out. What it comes down to is that there is a weird spot on his liver that’s been hanging around for a while (well over a year) but it hasn’t grown or spread and didn’t take up the MIBG agent at all (which is usually how they find neuroblastoma)… Sooooooo, they believe that Ben has NO EVIDENCE OF DISEASE. Whooooo-hooooo.

Now, this is wonderful news, of course, but you need to understand that Ben is still considered to have chronic disease. It will more than likely come back so we need to have a maintenance plan. We’ve been given two options, which are both open here in Denver, and we’re reviewing them as I write this post. Both options are an oral agent – so very easy for Ben to take – and he’d receive scans every 6-8 weeks depending on which study we choose. It seems like the therapy would be minimally invasive with the exception of getting blood work done and scans more often than he currently does. And, whichever one we choose might be able to start as early as next week! This is AWESOME!

In other cancer treatment news, Ben is not hitting his stem-cell harvest out of the park. We currently have enough for just one rescue. To briefly explain what this is all about… Ben has been through a LOT of therapy over the years. His red cells, white cells and platelets have been put through the wringer. When he receives chemos or other brutal therapies, it knocks his blood counts way down until his stem cells can get busy making more red, white and platelets. Count recovery can get slower and slower each time his body takes a therapy “beating.” So, we’re trying to harvest some of his stem cells now so we can use them as a rescue when we need to visit one of these more toxic therapies down the road. Since Ben has chronic disease, the likelihood of him needing a rescue is very high. Right now we have enough cells for only one rescue. We need lots more. I want to focus on keeping Ben healthy, not denying him what therapies that might benefit him because he doesn’t have enough rescue cells.

So, we’re headed to the hospital in a few minutes to try a new drug with the hope of jump starting his purge of stem cells. I’ll let you know how that goes after tomorrow’s harvest.

Well, that’s all the news I have here. Mostly good stuff! But the best news is that Ben is currently showing no evidence of disease. Let’s hope he can maintain that status for good with the help of one of these trials.


Join the Conversation


  1. This is wonderful!! Way to fight Ben!! Maybe Mom can take a little breath! Love you all!!


  2. Sarah,

    If you remember I am Lauren’s mom and just wanted to let you know I was thinking about you. Please let me know if you need anything.

    Prayers and thoughts



  3. You are such a force, I don’t know how you do it all. It’s wonderful to hear of Ben’s clean scans. I just wanted to let you know that my church in PA is praying for him, and will continue. Thank you for sharing your story, and know that love is coming your way from all around. Elizabeth (WMHS ’89)


  4. Wow. I hope the new therapy is a well deserved smooth ride for all of you.
    Prayers sent, hugs sent – you are all so special.


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