Ben hasn’t had any active treatment since the last round of MIBG in October of 2014.
We’ve been waiting to hear back from Sloan since then and finally did today. Part of the waiting was dealing with insurance, specifically Medicaid. Everything you’ve ever read or heard about dealing with insurance through the government is true. I sat on hold for hours waiting to talk to a person. One day I say on hold and because I was on for an hour, they hung up on me because their policy is to hang up after an hour. Thankfully I finally did get through to someone who was an absolute peach. Really, she was. Never forget that fellow humans are eventually on the other end of those calls…
So, I got a number for Sloan to call yesterday and they got everything straightened out. We also learned that we are now scheduled to fly out to New York for a full workup on March 30th. Ben will start treatment with hu3F8 the week after.
The funny thing about all of this is that after months of waiting, it took less than 24 hours for the Sloan to get everything in place after one simple call to Medicaid. That has to be a record somewhere…
Please pray for our family as we take this next step in the journey.
This week marks the 11th year my son, Ben, has been fighting Neuroblastoma.
He was initially diagnosed with Stage 4 Neuroblastoma on Feb. 20th of 2004. (At least I think it was the 20th. Like any memory, there are certain points that remain clear in my mind and others that I’ve forgotten.) His diagnosis came after months of being ‘sick’ with what we were told were normal childhood illnesses. Sadly, we had no idea that these illnesses added up to our son being sick with cancer. To this day I still get tense when I think about how we could have caught this earlier had we known what they symptoms really meant.
11 years is a long time, especially when you’re a kid who has been fighting for so long. Ben is special. I’ll just put that out there… anyone who has fought for 11 years and complained very little about the invasive and often-times painful treatments is very special in my eyes. His sister is special, too. Just because she’s not being treated doesn’t mean that she hasn’t been affected. I love them both more than anything else in this world. (Note, I wrote ‘this world’.)
Ben was given the all clear last week meaning he is once again NED (No Evidence of Disease). How I wish this were the end of treatment for him. How I wish he could never have to go back to the hospital for scans or have to go back to New York for ANY follow-up treatment. But, as my grandmother used to say, “If wishes were horses, beggars would ride.” (Let me know if you understand that, I still don’t think I’m clear on it…)
Treatment will continue for the foreseeable future. Dr. K in New York wants Ben to do 2-5 Hu3F8 treatments. Ugh. The non-humanized version of 3f8 was pure hell on Ben. (Ask me sometimes how many times he asked God ‘why?’ or said ‘Kill me!’.) Supposedly the humanized version is ‘less’ painful but painful none-the-less. For Ben’s sake we’ll all put on the same brave face and dive into this treatment like with did with every other one.
I’m really not trying to be a killjoy. Really. It’s just that the reality of my son’s existence is that he will continue to be treated for cancer for the rest of his life. He is chronic and until he passes, which I pray will be when he’s in his late 90’s, this will be the case.
Please continue to pray for Ben and all the other cancer kids out there fighting this nasty disease.
CANCER IMMUNOTHERAPY RESEARCH SEEKS TO FURTHER UNDERSTAND THE CANCER IMMUNITY CYCLE
The immune system protects the body from malignant cells via a process described as the cancer immunity cycle.1 Cancer immunotherapy research seeks to understand how the body’s adaptive immune defenses can be directed against tumors to overcome cancer’s ability to evolve and evade destruction.
Ben’s scan results came back as “All clean”. In fact, the radiologist told Ben’s oncologist that the scans were “Beautiful”.
Thank God for another bit of great news!
The downer part of all this is that the oncologist in New York is recommending Ben receive 2-5 doses of Humanized 3F8 before he gets the vaccine.
This time, since it’s Humanized it won’t be as painful. We’re gathering details on this but we will most likely be heading out to New York in the next couple of weeks.
Thanks for all your prayers and support.
I haven’t updated in awhile mainly because there isn’t much news to update on. Ben has been recuperating from the second round of MIBG and his counts finally started to come back up to normal levels a couple of weeks ago.
He also has started to transition back to regular school, which he was less than thrilled about. During the last 6 months of treatment he has been doing home-hospital teaching where a teacher comes to the house to give him 2.5 hours or so of teaching. The rest of Ben’s day was usually free to do what he wanted, like play video games and watch YouTube videos. Imagine being told that your free time was going bye-bye and was being replaced with school… He was not a happy camper.
The other aspect of this is the social part. Ben is not the most social kid in the world. That is a direct result of the 11 years of treatment he’s been through. A lot of the kids he knew well are either dead or have moved on to other phases of cancer treatment. Some, the ones without cancer, have definitely moved on. Their lives are normal. I don’t mean that to be sour grapes nor am I looking for a pity party. It just is as it is. When you have a kid who’s been through 11 years of treatment, that is just what happens.
Anyways, back to the social part, Ben was a little worried that he wouldn’t be able to connect with anyone. He was super-stressed that first day back, which was really only two classes.
Fortunately when he got out his first words were “I’m having a great day.” That did my heart good. It really said to me that he missed interacting with kids his age. We’ll need to be more diligent about it, at least when his counts allow him to do so.
Other than that, we are still in a holding pattern when it comes to treatment. Ben was supposed to start an experimental vaccine (yes, vaccine) in December but the supply ran low so we’re waiting to hear back from Sloan for news about that.
Once that news is relayed it will be more treatment out in New York, which I absolutely abhore. You see, I’m a small town kind of guy. New York is too big, too noisy and just not the most friendly place in the world. I prefer Denver or Columbus…
Thats it for now. Look for more news on Ben when we get word.
We have Ben’s scan results back and it is a complete response!
The MIBG therapy completely knocked out the cancer and there was nothing to be seen on the PET, CT or MIBG scans.
Ben is his normal calm self, mainly because he was confident it was going to do the job.
We are pretty happy about this, too. God has answered our prayers!
Next steps are possible heading back out to Sloan Kettering in New York for yet another experiment treatment. That may happen even before Christmas, but the actual treatment is over a year.
Thanks again for your love and support, it makes this fight so much easier to deal with.
So, while Ben was in MIBG treatment 9 News here in Denver did a story about him. I almost forgot about it but found out today that not only had they posted the story, but USA today has picked it up as well.
Thanks for visiting Ben’s site, it does mean a lot to all of us. Getting the word out about pediatric cancer is hugely important to us, especially after battling this beast for the last 10 years.
Be sure to follow Ben on Twitter @benjaminhbrewer
Also, be sure to visit his mom’s blog, Stronger Than I Look, for a much more emotional take on Ben’s treatment over the years.
To learn more about Neuroblastoma, visit Children’s Neuroblastoma Cancer Foundation.