We would like to send a heartfelt thank you to Casey’s wonderful friends at BBDO/Proximity for organizing such a great afternoon at Elsie’s Bowling Center on Sunday. Casey was touched by the overwhelming support from co-workers, friends and family. The event was a success on many levels, and the love and support from so many people was a huge boost for Casey.

LIFE SINCE DECEMBER:

The last several weeks have been extremely difficult for Casey. In December, Casey had to leave his job at Proximity after the tumor in his brain started to affect his speech, cognitive skills, and his ability to read and write. His doctors at both MDAnderson and Abbott Northwestern agreed that his existing treatment protocol was no longer effective and recommended that Casey try a new chemotherapy.

Just before Christmas, Casey started this new chemo treatment. It was set to be a 3-day, in hospital treatment that he would undergo every 4 weeks. This treatment is quite aggressive and needs constant monitoring as it is administered through an artery that delivers the chemo straight to the brain. Doctors anticipated to see some swelling (which is a good sign that it is working), however Casey responded to the treatment with a much larger amount of swelling than expected. As a result, Casey experienced even more difficulty with speech, reading, writing, etc. He also started having difficulty with his motor skills on his right side. Furthermore, Casey had to put the treatment on hold until the swelling was under control.

In January, Casey started doing Hyperbaric Oxygen Therapy to help with the swelling. He goes into a chamber that contains 100% oxygen and has increased air pressure. He has also been put on increased levels of steroids and switched back to his old, pill-form, type of chemo to keep the tumor from growing until he is well enough to go to the next step.

On Monday, Casey had an MRI. This revealed that while Casey still has some swelling, the tumor did shrink as a result of the intense chemotherapy treatment that he did before Christmas. His doctor feels positive about this, but says that he wants Casey to continue with the Hyper-baric Oxygen Therapy for another couple weeks. Once Casey is ready, he will want to do the aggressive chemo treatment again, but either at a lower dose or in a different form.

Over the next few weeks, Casey will be in Minneapolis Mondays – Fridays to do his Oxygen Therapy. Over the weekends, he will most likely be in Mankato. Although it is difficult for Casey to read your texts, emails, cards, and comments, he loves to get them! (We are always there to help him when he needs it.) He wants to be sure to keep in touch with people the best he can. And until he is able to take over his blog again, we will do our best to keep you all informed. (although we’ll never be able to write as good as he does!)

Casey and Dad before 11/04/09 biopsy.

Dad and I made it to Houston safely yesterday and spent the day in appointments to prepare for tomorrow’s surgery/biopsy. I met first thing with Dr. Weinberg. The first step was to get a new set of lifesavers on my head (see above). It was a bit of deja vu having them added again. And I’m wishing I had them on for Halloween as it seems like everyone loves to sit and stare! Anyway, we reviewed the risks of surgery, and I got more information on how they would approach the tumor from the top of my head to ensure the safest route possible. It sounds like there will be about 1 1/2 inches of incision. Once they open that they will remove a portion of my skull (a small hole) to allow room for the needle.  The needle will be tunneled through to carefully avoid an artery on the outside of tumor, and an area that controls critical muscle function on the inside. Obviously it’s not without risks, but Dr. Weinberg is saying there’s only about a 5% risk of severe side effects. We finished the appointment with me signing off on those risks and moving on to anesthesia prep. I’ve been put to sleep so many times for surgery that it seems I’m a bit of an expert. After that we had a bit of time to go grab lunch and hang out at the pool.

It’s now 7:00pm the night before the surgery and I’m back at M.D. Anderson for my last appointment… an MRI of my brain with the lifesavers on my head. This MRI will be part of the map they’ll use for the surgery itself. The building is almost empty right now, but we’re still having tests… 8:00am to 8:30pm. And tomorrow starts EARLY. I’m scheduled for surgery at 5:15am!!

According to Dr. Weinberg, I will be staying at 23-hour watch, so I’ll be in the hospital until Thursday (they don’t know if it will be ICU or regular room until after surgery). Assuming I’m not having any side effects from the surgery, I’ll be able to get out on Thursday, and then we’ll be returning for appointments on Friday to discuss results.

SOooo — a busy night and an early morning. I’ll keep you posted after surgery if/when I can, and will let you know the results once I hear them!

Mission burrito wishes and Amy’s ice cream dreams. Love, Casey

Just wanted to post a quick update to let you all know that I finally have plans set for my visit to Houston. Dad will be joining me this time. We’ll be heading down on Sunday the 18th, with appointments starting on Monday the 19th. I’ll be starting with standard blood work and moving on to an MRI. Following that MRI, I’ll be having a different form of magnetic resonance testing known as MR Spectroscopy.

Huh?

I looked it up and read that it is “used to detect the concentration of specific metabolites in a particular region of a tumor”.

Huh?

For now I’ll take it as another way of collecting information on the tumors. I’ll let you know when I understand it in full.

Tuesday is the crazy day. I start with PET CT prep at 7:00am and will be there for three hours. From there I go straight to Dr. Slopis to discuss my seizures. Dr. Wolff will join us to discuss the situation as a whole, with results from the MRI, MRS, and PET CT obviously being the focus. We’re hoping that this delivers good news, or at the very least a better understanding of what’s going on. And finally, we’ll meet with Dr. Weinberg (my original surgeon) to discuss if I’ll need a biopsy. If that biopsy happens, it will be on Thursday and I’ll be home on Friday. If not, I’ll return home on Wednesday.

Since there are so many questions that are up in the air (is it cancer? if so, what treatments? if not, what treatments), there will be a lot of important conversations taking place to move things forward.

I’ll be sure to pass along that information once I’ve got the results. Thanks to all of you for such amazing support. My family and I are continually wowed by how many kind words of support we see.

Take care, and talk to you soon. For now, I’m off to see Jill, Ben & Ruby. I’m going to be an uncle in a few months and need to bring out my first bunch of gifts. :)

Last week I had another one of those MRIs that snuck up on me with my doctor in Minneapolis. I’ve been so busy with work that I haven’t spent much time really even thinking about anything else. So when I got the call the night before to pre-register for the appointments it took me slightly by surprise.

It was just the standard MRI/doctor checkup that I’ve been having every 2 or 3 months since radiation. And I was assuming it would go just like the rest of them — ending with good news. This one didn’t quite go that way.

A month or so before the appointment I had spoken with the team in Minneapolis about the October/January appointments in Houston, letting them know that in October the team at M.D. Anderson thought there might be some hot spots on the scan but that January didn’t show anything. And I requested that those scans be sent from Houston to Minneapolis for comparison during this appointment.

I went in for my scan and then headed to the doctor’s office later in the afternoon. Generally, Dr. Truscheim opens the door and immediately says something like “everything’s great” or “it looks fine”. But this time he greeted me while heading to the computer to pull up the MRI and immediately started talking about the scan of the tumor — that is, the part of the original tumor that couldn’t be removed and was instead radiated. He pulled up that day’s scan, along with scans from last June, and started pointing to certain areas where he and the radiologist are “without much room for doubt” seeing an increase in the size of the remaining tumor. And as we went through different layers of the MRI, there were spots were I could see growth as well.

While walking me through these he was very quick to note how “very, very slow” the growth was and that for now we should just continue monitoring. I was trying to listen, but couldn’t help but think of the “what’s next?”

We discussed my P53 genetic disorder and how that limits the safety and effectiveness of certain treatments, and how jumping into chemotherapy or radiation run way too much risk at this point. After I asked him about surgery to remove it, he reminded me of the reason that area had to be left behind in the first place – “you wouldn’t come back the same you”. Without question, he is recommending we should continue to monitor with upcoming MRIs, and several times pressed the “very slow” message. It’s so damn easy to say, but wasn’t very easy to hear.

I called my dad and gave him the news, and of course broke down because it was all too familiar. But dad is always great at comforting at just the right moment. He reminded me that we still have no idea how long the original tumor was there in the first place… that it may have been since I was a little kid. And as far as the remaining tumor grows, “we’ll just have to pray that it grows so slowly that you outlive it.”

I think Dad is spot on.

I’m heading back to Houston in May with Mom for a full set of tests, obviously including another MRI. The scans from last week have been passed to the team there so we’ll be comparing lots and lots (and lots) of MRIs and I’ll update you accordingly. For now, hope you’re all doing well.

Love you.

P.S. Today is Jill & Ben’s one-year anniversary! Hence the photo from last year. I’m heading out to spend a week with them on Wednesday. Can’t wait!