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. He has decided to stop the experimental drug and move forward with traditional treatments. He’ll finish out this round of chemo then we’ll figure out what is next in a couple of weeks.
As his dad I’m proud of him for making decisions but I’m also scared because at some point he may just say enough is enough and we’ll have to respect his wishes.
Fortunately we’re not out of options for treatment but the next year or so will be tough on Ben, mentally and physically, as we wrestle with quality of life vs. continued treatment.
Thanks for your love, support and prayers.
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 back with a vengeance. At least the lesions are small and hopefully easily treated.
Ugh. Please pray for a miracle.
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 you’ll understand. It was horrible, mostly for Ben, but bad enough as his father having to watch him go through it.
It’s pretty well known by most folks we know that Ben has been in near-constant treatment for 11 years.
Think about that for a second or two.
11 years is a long time. Ben is turning 14 this year.
In 2004 the following events took place:
Casey Kasem turned over his hosting duties to Ryan Seacrest
Janet Jackson had a wardrobe malfunction at the Super Bowl
The New England Patriots won the Super Bowl
Ken Jennings finally lost on Jeopardy
Google introduced Gmail (on April fool’s day)
President Ronald Reagan was buried
The siege of Fallujah (Iraq) took place
K-Mart bought Sears-Roebuck and Co.
There were quite a lot more things happening during that year. None, however, had an impact on our family as great as our son being diagnosed with Neuroblastoma. Most of you know that story but how many really know what it’s like to have a critically ill child and have them go through almost-constant treatment for 11 years?
Fast forward to 2015. Ben is back in treatment in New York, which causes so many disruptions to all our lives it’s hard to sometimes even think about.
Constant travel between Colorado and New York is a financial hardship, even with some help.
We have to juggle our work schedules to make sure someone is actually making money.
Our daughter gets the privilege of being shuffled back and forth between different friends.
Little things, like home and car repairs, get left undone as we have to spend money for treatment related things.
The secondary effects of Ben’s treatment, like severe scoliosis, are starting to affect the quality of his life.
The list goes on…
While my list is personal and nowhere as popular as Tom Brady winning the Super Bowl, I can guarantee you that it’s 100x more important. I have nothing against Tom Brady (ok, I don’t like the Patriots) ask any parent with a child going through cancer treatment and they’ll tell you that all of the events listed above (and the many more that occurred that year) that none compares.
As a family we’re tired and in a near constant state of stress. The past 11 years have not been easy. Nor have they all been fun.
As you reflect on the past 11 years of your own life I ask that you thing about how many things have happened and then do two things:
Pray a prayer of thanks for the good things that have happened as well as the bad in your own life.
Understand that when when a parent (us included) asks for help while their child goes through cancer treatment, they really need help.
I know all of these trials are light and momentary (2 Corinthians 4:17) but knowing that sure doesn’t mean that they aren’t hard on the soul.
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.