Ben Brewer's Blog

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

We have removed the default registration setting from Ben’s site. Please consider registering as we would very much like to know who is visiting.

Despite what we were told last week, Ben ended up getting an appointment for his simulation on Monday instead of Wednesday. What that means is that Sarah and Ben took off for New York yesterday instead of Tuesday. This is good, as it gets him into radiation much sooner.

We’ll continue to update you through the week, or two, that Ben is in New York. It should be relatively non-eventful since since the radiation is lower dose. Also, the Millers arrive today, which will give Ben some time with Justin and Sarah some time with other NB parents.

Thanks to this of you who have donated to the Ben fund. If you are feeling generous, please hit up the fund using the link at the top of the page. Ben will most likely be in New York for up to two weeks and this trip could get w little pricey…

All the best,
Matt

We finally heard from Dr. Kramer late yesterday regarding next steps for Ben’s treatment. It turns out that the MIBG and bone marrow were clear. However, the CT, possibly due to scar tissue and fluid near the surgery site, was not.

Now, we don’t know if there is cancer in there, but we also don’t know that there isn’t. So, Dr. Kramer has ordered more radiation for Ben starting next week. At this point we don’t know how many rounds, possibly up to 10. Of course, this will be local to the site of the tumor and naturally will take place in New York. They are being cautious with this round due to the possible side effects with Ben’s lung being so close to the tumor site.

So, After booking fights to New York for Saturday, Sarah and Ben will now be traveling out on Tuesady. The first step is a simulation then the actual radiation. After that, we don’t know. They could be gone two weeks, but more likely it will be three as he will have scans again after radiation.

We’re both frustrated at the slow pace of this treatment. We both said last night that we thought it would be over by now. Of course, we wouldn’t want to take any shortcuts in his treatment, so we just keep plugging along. I think we all eagerly await the return to a normal sort of life. Not to mention Ben really wants a dog and he’s at the right age to have one…

When we were getting ready to let Ben know about this next trip, he initially said ‘This doesn’t sound good.’ then we told him and he was very non-chalant about it. He’s so used to just doing treatment, it’s almost like this is second nature, just a normal part of growing up Ben. That sucks.

(I secretly think he’s more interested in visiting the Nintendo store again and the cancer treatment is secondary to it all…)

If you’re feeling generous, please hit up the Ben fund link at the top of the page. Even if you’re not, keep praying for recovery. Also, keep praying for our friend Justin, who is still waiting on results from scans last week.

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

Just a quick update to let you all know what’s up with Ben. Fortunately, on the medical front their isn’t much going on. He had clinic today and his counts are still pretty good. He is still on the TPN, at least until he leaves for New York tomorrow. Hopefully he’ll be off of it for good as he is gaining weight again.

As for New York, Sarah and Ben will be making the trip this time. They will be leaving Wednesday morning and returning Saturday night. While this doesn’t give them much free time, their schedule will be jam-packed for the two days they are their. Ben has multiple scans as well as the dreaded double bone marrow aspirate on Friday.

We’ll update with another post once we get more information. Also, look for some new videos soon. Ben has been trying his hand at stop motion animation and just about has his first one done!

Matt

Ben would like to talk to some kids his own age. If you have a child that would like to talk to Ben, please send their name and a phone number to benjaminhbrewer@gmail.com. Additionally, if you’re on Skype, you can reach Ben at bbrewer3.

Ben was sprung from the hospital around 2PM MST on Wednesday. He was sent home with tons of drugs to keep him on the up and up as well as TPN. For those of you who don’t know what this is, it’s liquid nutrition we have to give Ben every night. Sarah, the seasoned pro, remembers the routine very well, which is kind of sad that it’s so ingrained. Ben was basically on TPN for the initial treatment, which was about one and a half years. We hope that he’s only on it for a short while this time because he lost a lot of weight during this last chemo and recovery period. Last check, which was the day before we left, he weight 42lbs. The TPN should bulk him up some until he starts eating again.

We are also in the process of updating photo galleries. Yes, we’ve been a bit lax in this as Ben’s treatment has allowed for little time to post photos, let alone get in a lot of ‘family time’ activities. We have just recently decided that amid all the chaos and inability to plan we are going to be a bit more spontaneous. For example, I took the day off work a couple weeks ago so we could go see Papa Gill up in Frisco. We also saw a good friend of Sarah’s, Kimberly, and a whole load of Chipmunks at Sapphire Point. Click here to see these photos and more.

A note about the registration stuff… Thanks very much to all of you that have registered. I did think about this for a long while, knowing full well it could put off some of the blog readers. However, after thinking about the huge privacy implications of putting this whole thing out to the entire world, I decided it was best to put it behind a firewall of sorts. One thing to keep in mind: Once you’re registered, you’re registered. We’re not restricting you in any way from reading and commenting on posts. If you know of anyone that wants to read the post but won’t register, offer my apologies, but let them know that my family’s privacy is much more important. (FYI – Sarah’s blog will remain open to the general public for the time being.)

More updates soon. The kids really want to start doing more videos, so we’ll get those posted as soon as they get them up.