Where do we go from here?

imageI 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.

Blessings,

Matt

 

 

 

Complete Response

imageWe 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.

Blessings,

Matt

Ben’s Story in the News

IMG_1877So, 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.

Blessings,
Matt

All clear!

We just got the word from Ben’s oncologist: All Clear!

The MIBG and I-131 did the job it was supposed to do and killed the visible cancer in his body. I’m cautiously optimistic that it also killed the extraneous cells that were hiding out in his bones and bone marrow.

While we’re not 100% ready to declare victory, we’re closer.

Many, many thanks to the staff at Children’s Hospital. It’s the dedicated folks there that make this fight so much easier.

God is truly good.

Matt

It never gets easier

IMG_0140.JPGBen checked into the hospital yesterday for the pre-treatment stuff before receiving MIBG therapy today. As a parent who’s gone through this for 10 years, let me tell you this: It doesn’t get any easier. At all.

For the kids, it’s almost as if this is routine, because in a way it mostly is. Ben settled into his hospital bed like nothing was really different in his life. Essentially, that’s true. He’s still playing videos on YouTube or playing the occasional game and chatting with friends, this time with an iPad instead of his phone. The location has changed from his room at home to his room at the hospital. (His room only because it’s not shared with anyone whilst he undergoes the MIBG therapy.)

For the parents, boy is it stressful. Even though this is the second time around for Ben, we’re still as stressed as the first time. We’ll be stressed when he does the next thing, too.

Watching your child go through this stuff is hell. For everyone involved, it’s pure hell.

That being said, we are fortunate to have a lot of support from folks near and far. His treatment team is awesome and we’re fortunate to have an MIBG room here in Denver.

Count your blessings if you don’t have someone in your life who’s suffering from cancer.

Matt

A Very Good Partial Response

The day, or days in this case, that every parent with a cancer kid dreads. Not knowing the results of until you’re face to face with the oncologist is one of the harder parts of this journey.

Scanxiety is the word most often used in the pediatric cancer community. Normally, I’m not all that affected by it. I understand that God’s plan often is not my own and that the results will be no matter how much anxiety and worry I poor into them. Either way, I rationalize, we’ll do something for treatment… or not.

This time, it was a little different. Perhaps its that 10 years of this is finally wearing me down. While I never felt anxious, I could tell that my body was reacting… 5 or less hours of sleep every night for the past week and the raging headache I’ve got right now attest to that.

Ben, on the other hand, takes all this in stride. It’s almost comical… if it weren’t his life we were dealing with. When I asked him if he understood the significance of the results he said, “Not Really.”

While I think deep down he understands, maybe he’s just also tired and puts any news out of his mind as quickly as he can. Either way, he’s had one heck of a journey and it will continue for the foreseeable future.

So, about that Very Good Partial Response. What that means in laymen’s terms is that the treatment did what it was supposed to do. The lesion in his skull is effectively gone and the spot in his chest, while still there, is insignificant. Had it not been for the chest thing, he would have gotten a Complete Response.

If this had been a test he would have scored in the 90-99% range.

We’re happy with that. It means that MIBG and I-131 worked on him. It also means that we get to do it all over again in October, but at least this time we’re prepared for it.

Thank God for the good results today!

Blessings,

Matt

Late August update

imageThere isn’t much to report since Ben got out of the hospital, which is a good thing, really. About the most interesting thing is that Ben is doing GCSF to boost his immune system but this was expected. The image on this post is of Ben giving himself the shot for the first time. (I’m really proud of how he’s handling this. He’s really becoming an active participant in his own treatment, just as I suspected he would.)

He also picked up a cold last week, which is one of those fun ones that lingers forever. He’s pretty congested and still hacking. His sister picked something up, too, as did his mom. So far, the animals and myself are the only ones not sick. :-)

The plan, if it’s so much as a plan, is to do scans early in September and that will tell us if he’s going to do another round of MIBG or move onto something else.

Thanks so much for the love, prayers and support. It really does mean a lot to us all to know that we have so many friends and fellow cancer families out there supporting us.

Blessings,

Matt