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 of the vaccine trial at Sloan Kettering. The experience at Sloan was less than optimal so we’ve officially broken up with them.
Go read the updates on Ben’s FB page for more details. https://www.facebook.com/I-love-The-Bean-214239098661615/
He’s still fighting and will continue to do so until his body gives out or he decides he’s had enough.
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 the last chemo and so far it has. The last round of scan results showed No Evidence of Disease! We’re cautiously optimistic that the next three rounds will eradicate the disease completely.
This is a big year for Ben, as well. He’ll be starting high school and it’ll be a very interesting, not to mention tough, transition for him. He hasn’t actually participated in school for a long time and hopefully will be able to get some of the high school experience without all of the treatment crap.
His birthday is coming up, too. I can’t believe he’ll be legally old enough to drive (on a learner’s permit). It’s a good thing we’ve got a 15 year old Saturn for him to test with.
Here’s the FB page if you want to follow Ben there:
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: a t-cell study in Seattle or a chemo-chimeric-antibody cocktail that has been used on a few patients across the country. We chose the second option as it gives us a better chance of having the cancer cleared up before proceeding to something like T-Cell or even Immunotherapy at Sloan.
Unfortunately, this chemo cocktail will also be a much stronger dose than the last. It will require hospitalization for the dose and probably after for Neutropenia.
So, that’s it for now. If you’re not following Ben’s page on FB please do so as Sarah updates that more than I do this page.
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 scoop on Ben:
He finished up round two of chemo last Friday and his counts have dropped, which is expected. We both expect him to go inpatient by tomorrow night as he’s already running a low grade fever. This is very typical for kids who just finished chemo but it’s never much fun sitting in a hospital all day and night.
After this Ben should be doing scans to see if the chemo worked, which we’re praying it has. After scans he may do radiation to each of the five spots that he relapsed in.
One of the really overwhelming things about this treatment is that we’re basically making it up as we go along.
Ben’s Doctor has put us in touch with the palliative care team at children’s to help us all with this, but mostly Ben. We weren’t expecting this and realizing that we may lose Ben sooner rather than later is too much to process. We try not to think about it but it’s always there, hanging over our heads.
Also, if you haven’t seen the local news, Ben was made an honorary police officer with the Aurora Police Department! This is something an organization called cops fighting cancer does for kids undergoing treatment. Ben’s buddy, Justin, received this honor a few years ago, too.
If you haven’t signed up to Ben’s Facebook page, please do so. I don’t keep this updated nearly as much as Sarah does his page.
Ben’s Facebook page
One very fortunate thing that has transpired is that Sarah has moved back into the house. We have to fight this thing as a team and while we still have differences of opinion on some things, we’re more united than we have been in many years.
Cancer makes a good common enemy…
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.