Ben Brewer's Blog

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

Things today have been relatively uneventful. Ben has stayed in bed all day, still to tired and sick to make it up. He just had another 10 minute puke-fest, once again with vomit and bile. This time, however, there was little to no blood. This portends good things, I hope. He has asked at least twice when he’ll be able to go home. I told him it all depends on when he’s better. That and when he has a $50 to slip to the charge nurse.

One other thing: his hair has started to fall out again. I leaned down to give him a kiss on the head and noticed his pillow was fuzzy. We are going to wash his head in bit in hopes of getting as many hairs out as possible before he falls asleep again. This is because we don’t want hair in his mouth… He did his before and it was not pleasant.

Have a great evening.

Matt

Ben is up and watching Disney XD right now! While his counts are still a bit low he is doing much better than expected. He is still puking a lot and has a million drugs going through him. Hopefully, if his counts rise and the stars align properly, he will get out early next week.

Ben was admitted to Denver Children’s Hospital on Wednesday of this week. He so far has received three rounds of Topetecan, two rounds of Cytoxin and one round of Vincristine (No, not the car, that was Christine.) He has been puking a lot, so they have been alternating Zophran and Benadryl to keep the puking to a minimum.

Due to yet another error in communicating with us (go figure) we were told Ben would be released on Monday. We were pleasantly surprised, and somewhat agitated, on Friday to find out that he would actually be released on Saturday afternoon. He will be back in clinic on Monday to undergo the stem cell rescue then back home.

So, all in all, this round, even though extremely high dose, has been relatively uneventful. That will change, of course, once his counts drop and put him back in the hospital. Most likely this will occur sometime next week, right when we’re all ready to hit the sack.

Ahh, the joys of pediatric cancer…

Ben eating breakfast

Right now Ben is eating a rather large breakfast of scrambled eggs and half of a belgian waffle (smothered in butter and syrup). Glancing over at him just now, he is unwrapping a small piece of chocolate that one of the volunteers gave him. Hopefully, this will all stay down long enough as his appetite sucks and he’s beginning to look like a concentration camp survivor again.

We’ll update more as the week progresses. Please continue to pray for Ben and the rest of the family. That light at the end of the tunnel is getting closer…

The Brewers

We finally hope that the hullaballoo, also known as cluster-f*$k, we went through last week has culminated in a plan for Ben’s next round of chemo. As you’ve probably read on Sarah’s Blog, things last week didn’t go as smoothly as anticipated and it fell to us, Ben’s parent’s, to coordinate the next round of chemo between three hospitals in three States (New York, Columbus and Denver).

Now, some of you may be thinking, well that’s not too bad, at least it got done… In many ways, you’re right, without our intervention and being complete PITAs, chemo would have been delayed, which would have pushed anti-body therapy out. I’n not a huge proponent of delaying any of Ben’s treatment. In fact, if I could get it all presented in a nice gift box, complete with Super Mario Bros. wrapping paper and a huge Bowser colored bow, I would. We could present that ‘gift’ to Ben and say, ‘Congratulations, son. Open this gift and you’ll be done!”

Unfortunately, it doesn’t quite work like this in the real world.

Back to my original point, though. Why did it fall on us, the parents who have not in fact attended one day of medical school, to schedule transplant of bone marrow cells from Columbus to Denver and work with all three hospitals to get his next round of chemo set up? Mind you, now, this was not outside the realm of our abilities. In fact, as I told Sarah many times last week, that’s what I do at work all day: Manage communications and requirements between my company and multiple other companies to implement a B2B and B2C online gift card solution. (FYI – by companies, think some of the largest retailers in the world and most likely they’re on my list…)

So, we got it done and Ben is going to start chemo this week after all, albeit 3 days later than originally planned.

His schedule, for those that keep track of things like this, will be:

• 2 Days of Cytoxin
• 4 Days of Topotecan
• 1 Day of Vincristine
• 1 Day of Stem cell rescue (hence the coordination mentioned above)
• Many days of rest and mucositis

We probably will be in the hospital at least 10 days, maybe more. In fact, it wouldn’t surprise me to see him go from Denver Children’s immediately to Sloan Kettering. This is because we have scan appointments in New York on May 13th and 14th. It would be neat if they could set us up with a private flight since Ben’s system will be completely compromised at that point…

And now, a public service message about planning… We don’t do it. We can’t do it. It is anathema to our lives right now due to the extremely f’d up disease my son has. Things change on a daily, sometimes hourly basis. As evidenced by the horror story of last week, we just don’t know from day to day what life will hold. The best we can do is hope that one little thing comes to fruition each day, and that will be enough to make us think that, yes, we still have some control over our lives. (Note: I personally plan on having at least 3 cups of coffee a day. God forbid the United States outlaws coffee. I would join my wife on a 7 state shooting spree then…)

So, the next time we say we’re going to do something, take it with a big grain of cancer-laced salt. For those who have experienced cancer, either by yourself of via close relative or friend, you know what I mean: It doesn’t give a fuck about your plans or anyone elses. All it cares about is destroying that loved one, leaving you with all your faculties focused on destroying it.

Everything else is minutia.

All the best,

The Brewers

Surgery for Ben was successful this morning. Dr. Laquaglia said that they found NO CANCER!

Ben is resting comfortably at Sloan and should be transported to his room sometime today.

More news as we get it.

Madeline's Donut Cake with Candle

Yes, Madeline turned six yesterday. She celebrated in style at the local Sweet & Sassy with a few girlfriends. They got all made up, hair, fingernails and clothes, and then took turns on the catwalk. We’ve uploaded a few pictures (out of the 250+) we took of the event. Go here to view them.

We’ll update you all soon with news on Ben’s upcoming trip to New York for surgery. Until then, God Bless.

Ben made this video before going to New York the last time.

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

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