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

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

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

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.