Ben Brewer's Blog

Really, things have been relatively mellow here since Ben got back from New York. About the only drama we’ve encountered is no getting his bloodwork back to Sloan in time for the next trip. Somehow the next day morning guarantee from FedEx really doesn’t count when you send something to New York…

So, we’re here for another week as Ben gears up for another round of anti-bodies. Hopefully we’ll be able to fill the time with some fun, summer type stuff. We plan to hit Idaho Springs this weekend for BeauJo’s pizza, the Indian Hot Springs and the gold mine (which Ben really, really wants to see).

We did go see a Rockies game last night courtesy of Starlight Starbright. That was fun… for about 3 innings. (The Rocks are on a major slide right now, in case you hadn’t heard.)

The tentative plan is to go to New York on the 8th and return on the 17th. Madeline and Dad will be going this time, too, so as to maintain some resemblance to family normalcy. (Of course, sitting in a hospital room with your son while he screams in sheer pain is most certainly not normal.)

Please continue to pray for Ben and the family. Ben is really struggling emotionally, always questioning why he can’t have a ‘normal’ life. It’s hard to tell him that this is ‘normal’ for him and that it’ll take a little while longer before he gets to real normal…

Love,

The Brewers

Madeline, Yoshi and Dad will be leaving in just a bit to pick up Ben and Mom from the airport. After what can only be described as an excruciating experience, they will be home for a couple of weeks before going back for the next round of antibodies.

I can’t even begin to imagine the pain Ben went through. I’m thankful he made it through this first round without any I’ll effects (that we know of) and will be back here.

Tomorrow we go to Papa Gil’s house up in Frisco for some much needed relaxation time. Gil has some prime fishing spots picked out for the kids and we are taking our canoe out for it’s first trip of the year.

Thanks for all the love and support. Ben will need it to get through the next few rounds.

Matt

Update: For those of you wondering about 3F8, I’ve included some information from the FAQ Sloan Kettering has put together.

What is 3F8?
3F8 is the name of a substance called a monoclonal antibody. It attaches to GD2, which is a marker on the surface of neuroblastoma cells. 3F8 was produced by white blood cells of mice, and it must be carefully prepared for human use. 3F8 is part of our standard treatment for high-risk neuroblastoma.

How does 3F8 work?
When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient’s own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient’s immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them. The treatment is effective even when a patient’s immune system has been weakened by chemotherapy treatments because chemotherapy does not affect the part of the immune system that responds to 3F8 antibodies. Over time, as the body’s immune system becomes stronger, 3F8 treatments may help the body learn to fight tumors on its own.

Why does 3F8 cause pain?
3F8 attaches to GD2, which is present on some nerve cells as well as on neuroblastoma cells. When 3F8 attaches to a nerve cell, a message is sent to the brain, and the patient feels pain. The pain usually starts toward the middle or end of the daily 3F8 treatment and lasts a short time (usually from a few minutes up to an hour). Sometimes discomfort or minimal pain continues during the hours after the treatment. Medicines are used to prevent or control the pain (usually morphine or Dilaudid) and the allergic reactions (usually Benadryl or Vistaril). Ativan and Zofran are other medicines that can help. Patients who were treated with 3F8 beginning in 1986 have been followed, and to date, no permanent side effects on their nerves have appeared.

Ben and Sarah arrived in New York Sunday afternoon. They started the first round of 3F8 this morning.

Ben responded as most patients do undergoing this treatment. He went from 0 to 2000 on the pain scale in a matter of a few minutes of it being injected. I can’t imagine the pain my little boy felt and am heartbroken that i can’t be there to hold him as I have done many times before. I also can’t imagine the pain Sarah is feeling right now as she watches her first-born, really a miracle child since he was a miracle God brought us when we didn’t expect one, writhe in pain. God bless her for having the fortitude to handle this without going on that seven state shooting spree…

God bless Ben, too. He is such a trooper, much stronger than he appears. Someday he is going to rule the world, or at least a small part of it.

Please pray for Ben and Sarah this week.

Matt

We heard back from Dr. Kramer this morning regarding Ben’s treatment. Though they did find a spot via CT in the same location, they are encouraged that it was there the second time and are still thinking it was post operative changes. Due to this, they plan to move forward with the 3F8 treatment on July 12th.

Ben starts GMCSF shots next Wednesday for the rest of the week. He, Sarah and Madeline will be traveling to New York on the 10th and will be returning the week after. Even though I would really like to be there for his treatment, someone has to stay behind to man the fort and keep Yoshi company. Not to mention it gets pretty pricey flying us all out…

Extra prayers are requested for this next round of treatment. This is, for us, the big unknown and we pray that Ben’s system is able to take the multiple rounds of 3F8 and nor HAMA out.

All the best,
Matt

Parents magazine did a nice writeup of icing smiles, the company that created the Yoshi cake for Ben’s birthday. Please take a look at the article here: Parents.com

We celebrated Ben’s Ninth Birthday yesterday. Many thanks to the folks who came out to celebrate with us. A special thanks to Nanette and Sean for letting us use their house and the bouncy house. Also to Mike and crew from Outback Steakhouse for donating the wonderful chicken and ribs.

Please visit our Photo Gallery to view pictures of the event.

Not much happening lately. Ben and Sarah have been in New York for a week and a half and plan to come home sometime around the 26th. He has so far weathered the combined chemo and radiation well. Hopefully this will clear him up to receive the antibodies next month.

Ben’s birthday is June 22nd and if you are so inclined please send him a card at the Ronald McDonald house in New York. You will find the address in a post below. We are thinking of having a birthday party for Ben on Sunday the 27th, so stay tuned for more info on that.

Have a great weekend,
Matt

So, after the fiasco that was last week Ben and Sarah are due home tonight from New York. Essentially, they spent a whole week there so they could spend 10 minutes with the Radiation doc and another hour doing the simulation. While Sarah and I understand why this is essential, we’re both fed up with Sloan Kettering. We were under the impression Ben would start radiation this week. No one bothered to tell us that after the simulation it takes 7-10 days to set up the actual radiation treatment! Ben is already at the 3 month mark after the last round of chemo, which we were told was the maximum for him to start receiving the 3F8. That means, with the extra radiation, which is now scheduled to take place on June 10th (not the 7th as we were originally told), Ben will be well past that 3 month mark when he starts. What this means is that he could HAMA after the first treatment, which would cause further delay or even mean he won’t receive any more.

Tuesday morning is going to be interesting. We plan to call the hospital and ask why treatment through them has been so disjointed. In addition to fighting with the hospital to get them to get paperwork into Aetna (who actually did a great job rushing approval through), we had to actually do their work and call Columbus Children’s and Denver Children’s to get them to send Ben’s radiation records to Sloan. People bitch about insurance companies, I’m bitching about the actual hospital. I don’t think these people actually get the financial and emotional toll this takes on us as parents. I honestly wonder if having the experts in New York is such a good idea. It seems to me that they should move the experts to someplace like Boulder (much smaller in comparison to New York) so they can partake in the good life and reconnect with the good things. Maybe then they’ll actually have a chance to see how hard this is on us, especially Ben.

Enough griping… Ben and Sarah are back home tonight and will be here for a week and a half. Time to get showered and clean up the trail of clothes Madeline has left throughout the house. I might even clean a toilet or two…

If you’re in the Denver area, please make it a point to stop over at the Bake Sale this weekend. The money goes to different charitable organizations to help fight pediatric cancer.

All the best,
Matt

Plead come to the fundraiser this weekend there are some fabulous raffle prizes!

Here are the items for raffle at the weekends garage/bake sale fundraiser.

$1.00 raffle item
$25 gift certificate donated by Costa Vida Fresh Mexican Grill

$2.00 raffle item
WII Super Mario Galaxy 2

$5.00 raffle items
A Birthday Party package donated by Play and Trade Video Games – includes pizza, cake and one hour of game play with your friends – $100 dollar value!

and a Microsoft Windows 7 Operating System

We are going to have a really fun time, come out and enter to win some great prizes, buy a treat or just bargain shop at the HUGE garage sale!!

Thank you to all that have donated we’ve filled our garage and we are so grateful for the support!

BENefit Garage/Bake Sale – THIS WEEKEND May 27, 28 and 29

3307 Chandon Way
Highlands Ranch, CO 80126