Ben started round two of 3F8 on Monday, August 9th. He is doing somewhat better this time, requiring what seems like less ‘help’ during and after the infusuion. Today was the first time I got to experience the administration of the wonder treatment and I am very proud of how Ben handled it. A friend likened it to a gall bladder attack x 100. Personally, I’ve never experienced a gall bladder attack, but I can imagine that it pales in comparison to what Ben and the other kids go through during this treatment.

Fortunately Ben only required heat packs and massage to his midsection today. It was slightly surreal to her him yell out “Give it all you’ve got!” or “More, give me more!” as I rubbed his stomach with heat packs, bearing down as hard as I could to quell the pain. He sounded more like a football coach than a 9 year old kid…

On the way in we met another family going through the same thing. It was disheartening to hear the mom say that her son wasn’t getting dilaudid with his 3f8 anymore because he had a reaction and crashed earlier in the week. I couldn’t even imagine having to put Ben through that, given the pain he had today, which was relatively minor in comparison to other days.

Ben is resting comfortably right now back at the Ronald McDonald house. Only God knows what tonight will bring, hopefully a little respite from the pain.

He deserves at much.

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

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

Ben during 3F8 treatment

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

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

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

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

Well, we finally took some time to go to Mt. Rushmore this past weekend. We’ve talked about it since last year, at least, and decided at the last minute to take a quick weekend trip to see this great monument. The kids enjoyed the trip as did Sarah and I. The highlight was probably seeing the bison up close at Custer State Park. Emma and Rose, two kids we found wandering the streets, came with us. (We will report their father to the local authorities as soon as we can locate him.) We will have to go back again, mainly so we can hit Wall Drug and Devil’s Tower in the same trip. Stay tuned for that… You can view the some of the photos we took here.

Yes, Sarah and Ben are back in New York. He starts radiation tomorrow (Wednesday) and will be there for at least 7 days. The plan is to have him do two doses a day and then scan him right afterwards. Of course, we don’t have any guarantees that he will be clean after the radiation and, quite frankly, we don’t even know what’s in there right now. This is, as you can imagine, very frustrating. We hate to put Ben through all this crud, but have to do it to save his life… Oy.

The worst part of this is that Ben will be in New York for his 9th birthday. I don’t know about you, but I’ve never missed one of my children’s birthdays and I really don’t want to miss this one. That being said, I think we’re planning a special party for him when he returns to Colorado. We’ll get some of his friends over and throw a right fine party for our little man… Maybe his wish to have a dog will finally come true (though Sarah and I may just opt to do that once he’s clear.)

If you feel like sending Ben a card, please do so. The address for the Ronald McDonald house in New York is:

Ronald McDonald House

C/O Benjamin Brewer

405 East 73rd Street
New York, NY 10021-3865

All the best,

Matt

[Note: Emma and Rose really weren't wandering the streets. Their parents, Rich and Tracey, are good friends of ours. Rich wanted to shirk his parental responsibilities while Tracey was out of town so we obliged. We're still reporting him to the authorities...]