Ben Brewer’s Site

New York Update

Ben and Sarah are in New York and will be there at least until the 15th. Ben will have surgery on Monday, March 8th to remove what could be remnants of the tumor. He’ll be there, most likely in the hospital (which is not a family friendly as Columbus or Denver Children’s Hospitals) for at least a week of recovery. After that, he’ll have a post-op consult with Dr. Laquaglia on the 15th. Then they’ll both head back home to beautiful Denver. (Where the sun shines at least 300 days of the year!)

Madeline is here with her dad, though she would much rather just play with her girlfriends… Dad just doesn’t do girl-stuff well.

Once we have an update on how the surgery went, we’ll post another quick entry.

Love,

The Brewers

Ben Update

As most of you have heard, we got good news from Doctor Kramer on our first visit to Sloan-Kettering a week ago. She told us that she thinks that Ben is curable, but we still have a lot of treatment to go. It’s almost surreal how long this has been and how much longer Ben has to go, but at least now we see a light at the end of the tunnel, even if it is months away.

Our next steps are surgery on March 8th with Dr. Laquaglia, whom we’ve heard is the best pediatric cancer surgeon in the world. Not to slight any other surgeons, but this type of thing is Dr. Laquaglia’s specialty. The reason for the surgery, you might be wondering, is because the CT scan showed something in the area where the tumor originally surfaced. They’re not sure what, but they need to go in to check it out. Due to this, Ben had a low-dose round of chemo last week of Irinotecan and Timidor, to prevent any spreading of the possible tumor.

After recovery from surgery it’s yet another round of high-dose chemo to prevent him from HAMA-ing out. Since the antibody he’ll be receiving is straight from a mouse, his own antibodies can turn against the mouse antibodies. Hence this: Human Anti-Mouse Antibodies. We fully expect Ben to be back in the hospital after this round with mucositis and other nastiness, which won’t be fun for him.
When he’s recovered enough it’s back to Sloan to start the 3F8 therapy, which again, will be for at least for rounds.

So, it looks like we might (fingers crossed) be finished with treatment in July-ish, if all go’s well.

If you’re inclined, hit up the link for donating to Ben’s Fund. Flying to New York every month and the other stuff that goes with treatment isn’t cheap. If you’re not, please say a prayer for Ben that he finally makes it to that light at the end of the tunnel.
Love,
The Brewers

Update on the Snuggie Pub Crawl BENefit

Our good friends, the Fraziers, sent an update on the benefit:

Hello Friends,
Darrell and I would like to thank each and everyone of you that had either joined us or made a donation to the Snuggie Pub Crawl “BENefit” last Saturday. We are thrilled to announce that we have raised over $7000 for the Brewer’s all while having a great time, but the BEST news is that Ben received a really positive report from his Dr’s in NYC last week. Please read Sarah’s blog at www.strongerthanIlook.com for the details.
Many of you have asked if you can still donate to the “BENefit”. I will be leaving this account open until Saturday, Feb 13. At that time, the funds will be turned over to the Brewer’s.

Please enjoy the video of evening.
http://www.youtube.com/watch?v=wohGYiie1n0

Thanks again, to all of you, we are truly blessed.

Patty & Darrell
——————–

We are humbled and feel very blessed at this outpouring of generosity. Thank you so much to all of you who donated time, equipment and money. Knowing you have our backs like this certainly takes the edge off of some of the craziness.

God bless,
The Brewers

P.S. If you haven’t read Sarah’s blog yet, you should as it has more updates. stronger than I look

Great news today!

I couldn’t have said this any better so I borrowed from sarah’s blog:

Today in history, February 3, 1959, marks the tragic airplane crash that took the lives of Buddy Holly, Richie Valens, and the Big Bopper at the peak of their musical careers. While I was not in existence at this point in time, being a rock and roll music aficionado dictates that this event has impacted me on a profound level. Plus, I love the Don McLean song “American Pie”, which commemorates the tragic event. I know this song by heart and can even strum a bit of it on the guitar. It’s always a hit around the campfire.

While the events of what happened in 1959 are, indeed, tragic, my sorrow surrounding this event is completely overshadowed by my immense joy. We learned today, February 3, 2010, that our fine young son, Benjamin, is in a good position of being CURED of this whole neuroblastoma mess. It’s going to take a while and there are some steps we weren’t expecting, but the overall outcome should produce a “long-term-on-earth” Ben. The minute Dr. Kramer made this statement, the tears started rolling. THANK YOU, JESUS!

Admittedly, I’m not crazy about this New York City place. I might reach a certain comfort level in time, but for now, I feel completely claustrophobic. I’m more of a Wyoming girl – preferring a total population of 500,000 compared to this itty-bitty island with its millions of people and crazy drivers. Someone give me a paper bag. I need to hyperventilate.

So, this morning we arrived at Memorial Sloan Kettering Cancer Center (MSKCC) to meet with Ben’s treatment team. First, we met with the financial guy. Then we met with Ben’s social worker. She is in charge of our Ronald McDonald stay and helping us apply for financial aid. Then we met Dr. Kim Kramer. She examined Ben and chatted with us at length about her thoughts. She said that since Ben relapsed so late after initial therapy (four years after being declared to have no evidence of disease) and the fact that it came back in just the one spot with no bone marrow involvement, she believes that this 3F8 therapy will CURE MY BEAN!!!!! Someone give me a paper bag. I’m hyperventilating (in a good way).

So, tomorrow Ben will have an Echocardiogram and an MIBG injection. Then Friday he will have his MIBG scan, a CT scan, and then a four point bone marrow biopsy (which takes a cross-section of bone from the front AND back of the hips. He’ll be sedated for that last part and probably be a bit sore for the rest of the day.

What will come next depends on the outcome of his scans. If he has a little bit of disease left over, he’ll be scheduled for surgery (with Dr. LaQuaglia here in NYC), a round of high dose chemotherapy (in Denver), and then start the 3F8 antibody therapy AFTER he recovers (back in NYC). If he has no disease at all, then he’ll be scheduled for a round of high dose chemotherapy (in Denver) and then start the 3F8 antibody (in NYC). We weren’t expecting having to put him through more chemo, but Dr. Kramer says that the antibody therapy will work better if he’s had recent chemo. It’s going to be a bummer though, because his hair has just started to come back in AND this is going to knock him out big time. I was hoping for no more hospital stays, but this round will mandate that we’re inpatient. OH WELL. HE’S CURABLE!!!!!! We’ll take the positives where we can get them.

So, we have a long way to go. But we want this antibody therapy to work so we’ll do what we have to in order to get this kid of mine back on the road to normalcy. It just can’t happen soon enough.

Off to new adventures!

We had the opportunity to travel to Columbus to attend some of the BENefit this past weekend. We had a great time and the turnout was really good. It was very nice seeing all of our old friends and we’re blessed that the Fraziers took the time to put it all together. Once we get some pictures from the benefit (we forgot the camera in the back seat of the van) we’ll post them. Ben even gave a short speech to the folks and helped give away door prizes. Of course, no trip to Columbus would be complete without a little family drama, so we did our best to minimize it. Fortunately we’re all now on skype so family contact for the remainder of ben’s treatment will most likely be over the interwebs.

We’re now in New York, haveing arrived here the day after we got back from Columbus. Ben has tests this week that will determine what the 3F8 antibody treatment will entail. This will include a CT scan, hip aspersions and finally an MIBG scan. He had a little residual cancer after the last round of chemotherapy, so hopefully the radiation knocked it out.

Tomorrow should give us plenty of time to do some site seeing. Our first order of business is Rockefeller center, home to the Nintendo World Store. Ben will probably pee his pants when he sees it, so we’ll take an extra pair. Then we’ll head over to the American
Girl store, where Madeline will most likely wet her pants. We’ll bring two pair for her. St. Patrick’s Cathedral is also on the agenda then we’ll have to visit the Apple store… We’re I promise to not wet my pants unless they have an iPad on display.

We’re staying at the Ronald McDonald house a few blocks from the hospital. We’re really impressed with the accompdations and the folks working here. We’ll post some tips for other families making the trip out here. Tip #1 when your wife is hungry and cranky, don’t take the family to a pizza/dining establishment for dining. Opt for the quick piece of pizza… Tip #2 bring water, you’ll need it.

More tips as we get further into this. God bless and if you find yourself in Manhattan, let us know.

The Brewer’s

Please join us for a “BEN”efit.

You are cordially invited to join us on Saturday, January 30 for a “Snuggie Pub Crawl” – a benefit to help fund Ben Brewer in his fight with relapsed neuroblastoma.

Ben just finished his sixth round of chemo and will begin radiation therapy on Monday, January 11. After 14 rounds of radiation, Ben (along with his family) must travel from Denver to New York City to receive antibody therapy at Memorial Sloan-Kettering hospital. There will be at least five trips to New York, but there could be as many as 12. The cost alone for air travel will be enormous, but given that this therapy is not offered locally, there is no other option. Hopefully this “BEN”efit will help the Brewer’s with their travel expenses.

The line-up of Pub Crawl events are as follows:
* Meet at 6 PM at The Morgan House to board the “Snuggie Bus”
* First Stop – Benny’s in Marysville where we’ll be treated to an ice cold “Ben’s Frost Top” and a pizza buffet.
* Second Stop – The Bogey Inn where we’ll each enjoy a “Benjamin Bomb”.
* Final Stop – Largo’s where they will serve us their specialty drink “Cancer Ass Kicker”!!!
The night will also include lots of other fun things: live music, raffles (with great prizes) and a little Karaoke!

The seats on the bus will cost $50 per person and will be sold on a first come first served basis. The bus is sure to fill quickly, so don’t delay!

Oh, and the Snuggies aren’t optional, so if you don’t already own one, head out and buy one as soon as possible, as the local stores are sure to sell out!

If you are not able join us but would like to donate, we have a fund set up at Fifth Third Bank/Benjamin Brewer fund. Please contact me for details.

We look forward to “Crawling” with you all!! Please feel free to forward this invite to everyone you know!

Patty & Darrell Frazier
pfraz@columbus.rr.com

What are you thankful for?

Monday morning update

Ben is, as you’ve probably heard by now, back in the hospital. He spiked a fever, 102.2, Saturday afternoon and we followed protocol and took him to the emergency room. Oddly enough, he had no fever once we got there but spiked again as soon as we got settled into a room. I think his immune system was just saying “Keep me out of the friggin’ emergency room!” because it was packed!

Now, the funny thing about it was that 90% of the people in there were family members. While I understand that trauma affects a family overall, I don’t understand why, when a child is sick, you’d bring your ENTIRE family, meaning all the kids, aunts, uncles, cousins, etc. It’s something we’ve pondered regularly since the hospital put the new ‘no other kids’ policy into effect a month ago.

So, about Ben… The fever stopped yesterday and we are going to fight to get him out and home today, if the cultures come back negative. He’s much happier at home and we really don’t want to go stir crazy again in the hospital for 5 days. There is only so much one can do to keep an 8 year old entertained before he starts to get depressed and miss being in the comfort of his own home. So, pray the cultures come back negative and we can clear out tonight or, at the latest, early tomorrow morning.

Christmas is coming up fast, if you haven’t noticed. Ben has expressed to us many times that he’d like to be an engineer when he grows up. He used to want to be a rock star before he found out how hard Guitar Hero is to play, and we haven’t told him that it’s nothing close to playing real instruments. If you have a suggestion on some kids toys that would stimulate his engineering talents, send them to us.

Also, a minor update on treatment plans (though not really an update)… Columbus Children’s Hospital opened a 3F8 antibody study recently that Ben might have been able to participate in. While it would have been nice to go back to Columbus, the study required Ben to still have traces of cancer left before entering. That would have meant Ben would have to receive 3F8 AND radiation back to back for a few months. Because 3F8 is extremely painful (from what we’ve heard from other parents) and radiation knocks the hell out of Ben’s system, we didn’t want to deviate from our current plan, which is radiation then 3F8. So, long story short, we’ll be going to Sloan Kettering in New York after he finishes up radiation, which should be sometime in February-ish.

This will mean Ben should (if he’s feeling well enough) be able to get out and see some of New York. He’s especially excited to see the Nintendo Store, if you can imagine that.

That’s all for now. Please continue to pray for Ben’s well-being and our sanity as we try and get him over the finish line.

Love,
The Brewers

News and photos

For the most part, things have been relatively quiet on the Ben front this past week. That is, if you consider 5 days (I think it was 5, I lost count after 3) in the hospital nothing. We were finally furloughed Sunday morning and made it back home around 11:30AM. We’re very fortunate that the hospital visit wasn’t bad, mostly boring, but we did find out that Ben’s white blood counts are not improving as fast as they were previously. This might mean we need to get him on the GCSF shots, a daily thing. Ben, as most kids his age, hates shots. Imagine, those of you who don’t already have to do so, giving your child a shot daily… possibly for the next month or so. Oh, and we have to do it for the antibody study, too. Thank God for emla and Ben’s strong will to live!

So, in other news, Ben did miss Halloween. When he realized it, while in the hospital, he cried. Real tears. Yes, he was loaded up with candy in the hospital, but missed out on the other stuff, like wearing his costume and trick or treating with friends. That being said, Ben did manage to treat others while we were in. He asked that we take a large bag of candy back out to the nurses station and put it in the bucket so others could have it. He also handed out pencils and treats to the other kids and nurses on the floor. Even in the midst of this terrible pain and suffering, Ben still manages to let his heart guide him. (Let this be a lesson to those of you who horde the best candy for yourselves…)

Ok, on to the treatment plan: Ben has an MIBG scan tomorrow. This is so Sloane Kettering can get a baseline for his treatment prior to our trip out there. Since his counts aren’t rebounding, we’re not sure when the next round of chemo is, but it will be followed by two more. Then it will be 4 weeks of localized radiation therapy, then New York. We’re honestly not sure when this craziness will end, as it’s now one day at a time, but we’re looking at May before Ben is maybe, possibly NED.

So, on to the pictures. I know you’ve been waiting breathlessly for new pics of our family, so, go here “Our Great Photos” or click on the large photo above to get to the gallery. (Ok, not all of you have been waiting, just a few…)

Best,

The Brewers

Back in the hospital

Apologies for the lapse in updating. The plan was to post on the second day of legoland. Unfortunately, as is normal, time got away and now we find ourselves back in the hospital. Ben spiked a fever on Tuesday and was admitted around 10:30pm. We hope to get out tomorrow, just in time for Beggar’s night.

We talked to Ben’s oncologist about our trip to New York and learned we most likely won’t go until January. We were very much looking forward to being out there for Christmas, New York in January just doesn’t sound like a lot of fun… Someone correct me if I’m wrong.

Ben will undergo 4 rounds of 3F8 antibody treatment after localized radiation to the tumor site. The antibody treatment will consist of GCSF shots to boost his immune system then a week of antibody treatment. This will be be followed by three weeks off back home. Rinse and repeat 3 more times.

This plan puts us out to at least April before Ben is declared NED once again.

Many thanks to all of you who have helped us out during this ordeal. Your love and support have truly made it easier to handle.

In lieu of a post about Legoland, please visit Ben’s Photo Gallery and enjoy the pictures.

All the best,
The Brewers