Ben is in the hospital. He was admitted on Sunday, March 11 for excruciating pain in his liver and a high fever. The last MIBG scan showed that the neuroblastoma has infiltrated his liver and is basically making it unable to function. The cancer has also caused issues with his lungs and intestines. Essentially, Ben’s body is shutting down. This […]

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 […]

Ben still isn’t NED. The tumor near his spine responded well to the radiation but MIBG scan showed a new spot on his femur. Looks like whack-a-mole is the game we’ll be playing for the long term. Keep up to date on Ben’s FB page here. Matt

It’s been a long time since Ben’s site has been updated. Sarah does a pretty good job of keeping most everyone up to date via FB so it’s been less important to keep the blog updated. That being said, I figured it was about time to put something up. Long story, short – Ben relapsed again (#5) in the middle […]

It’s been awhile since we’ve updated Ben’s site. Sarah does the heavy lifting on Ben’s Facebook page with keeping people up to date with Ben’s treatment. For those of you who don’t follow Ben there, here’s the scoop. Ben has undergone more chemo with a combination of CH14:18. The hope was that this combo would do a better job than […]

Ben finished his fourth round of chemo a couple of weeks ago. Unfortunately it didn’t seem to stop the progression of cancer as a new spot was found on his C5 Vertebrae. We were a bit shocked at this news as the scan prior to this showed that the cancer was stable. So, after this news we had two options: […]

I’ve not had a lot of opportunity to update Ben’s blog since he started treatment. Oh, ok, I have but I’ve just not been motivated to do so. Both Sarah and I have been so overwhelmed since being thrust back into the fight that it’s a miracle either of us makes it out of bed in the morning. Here’s the […]

Ben started an “experimental” treatment last week that we had hoped would help shrink the multiple lesions in his body. Unfortunately he broke out into a massive and very painful rash over the weekend and ended up in the ER last night due to a fever of 104.5. Due to Ben being 14 he actually has input into his treatment. […]

We are shocked and a bit dismayed. Ben’s oncologist called late last night to let us know that the scans showed 5 new lesions (disease). Right collarbone. Right orbital bone (eye). Right femur. Lower back. Left kidney. Did I mention we’re in a state of shock? After all the treatment he’s been through in the past 15 months it’s come […]

Ben made it through his first round of Hu3f8 in New York. The first day was pure hell because they gave him a little too much dilaudid (painkiller) and had to back that off which sent him into complete agony. If you want to know how PTSD is triggered, go do this treatment with a child a few times and […]