Ben Brewer's Blog

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.

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

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.

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

Just when you think things are going smoothly, Sloan Kettering has no record of you having a radiation appointment… Or, so they say.

I spent the majority of the morning trying to figure out how to get Ben into his radiation appointment for today. Despite my best efforts, I was unable to secure anything more than a few apologies from Aetna for not being able to turn around the pre-certification in more than a few days time. This, despite the fact that we’ve know about this since last week! It turns out that a the billing department at Sloan needed a letter of medical need from the radiation doctor prior to sending a billing code to Aetna for pre-determination of treatment. Unfortunately, the letter is ONLY given after the patient has seen the doctor. And then it takes 3-5 business days for Aetna to give the approval.

So, long story short, make sure your doctor, after confirming radiation starts on Monday, really means that radiation (not just a doctor visit to ‘get the ball rolling’) starts on Monday, not some date to be determined in the future.

Fortunately, I was able to break away from the madness for a bit to watch Madeline at her Kindergarten field day. I couldn’t have been more proud of her: She smoked the competition in the relay races and totally obliterated the boys in the hurdles. She looked like a natural and the other parents and teachers were equally in awe. (Really, as she ran the hurdles they all were saying “Wow, she’s fast” and such. Her teacher even said “I think you found the sport for her!”) Today, I gloat and brag about my daughter. Tomorrow… perhaps I consider a track program for her? We have pictures, if you’re interested.

Ben, whom you’re probably wondering about, seems to be taking this in stride, as usual. Of course, Super Mario Galaxy 2 came out yesterday, so he’s spending some time racking up the stars and other points the game has to offer. I’m actually a bit jealous about this because I can’t play with him, like we played the first one. Ah well, there’s always Bioshock II on the PS3. (Kidding… sortof.)

That’s all for now. We’ll fill you in more once we get word back from Aetna that his radiation treatment has been approved. Hopefully that will happen this week or else they could be in New York for 3-4 weeks. I don’t think Madeline and I would be able to handle that…

All the best,
Matt

So far, no major news from Ben’s scans. The Dr. Thinks that his CT and MIBG were clear, though we really won’t know for sure until Tuesday. He seems to have weathered the dual bone marrow aspirate fairly well, considering what the procedure entails. We’ll know the results from that one later next week.

On another note, Dr. Kramer did let us know that they did find some residual cancer when they did the surgery last month. They are confident, however that they did get all of it this time.

Sarah and Ben are attending Mary Poppins tonight, something fun amidst the chaos. Ben seems to enjoy the broadway shows, so we’ve tried to make it a point to take him to one each time he’s out. Fortunately there are many ways to purchase cheap tickets for broadway shows, not to mention the wheelchair accessible seating is usually easy to obtain…

A request please. Our friend, Justin Miller, who is also undergoing treatment for Neuroblastoma, needs prayers. Something was found on one of his ribs during his MIBG scan this week. The doctors haven’t said that it is cancer, but they haven’t ruled it out, either. Please keep Justin and his family in your prayers.

Justin’s caring bridge age can be found here: http://www.caringbridge.org/visit/bunkyspage/journal

Matt

Ben’s counts were outstanding today, at least his ANC. It was 319, a huge improvement from 69 yesterday. His platelets are still a little low, running at 17, so they are going to tank him up before releasing him to the wild…

He is asleep right now, having had a not so easy sleep. He still is having issues swallowing, mainly due to the possible ulcer in his esophagus. Hopefully that heals quickly as his counts continue to rise. Otherwise, he might have to get a GI scope, which I can imagine would be about as fun as a poke in the eye with a sharp stick.

If all goes well, we should be out of here mid-afternoon. That should give us plenty of time to eat some of those cupcakes Sarah is making…

Thank you for the love, care and support you’ve all shown us. It certainly makes it easier knowing that you have our backs.

Matt