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!)

Saturday marked the end of my first week of chemotherapy. Based on my experience with it in the past I thought I’d have all sorts of horror stories to share, but it went fairly well. Starting Monday night and ending Friday night, I took Zofran at 5:00p and 10:00p, then took the actual chemo drug Temodar right as I was going to bed. The whole week I kept a bucket next to my bed, imagining the worst. But the good news is that I never really felt all that close to throwing up. I guess Zofran was the magic bullet. Or Temodar is easier than the Adriamycin/Cisplatin/Ifosfamide I became so used to when I was 17. Or some combination of the two. Regardless, the worst it got was an occassional bit of upset stomach that lasted a few minutes. Still, I was happy to hop off it after those 5 days.

Today was my first day of bi-weekly Avastin infusions. Like the Temodar, it was pretty easy. As you can see above, it was just like a standard infusion this time, delivered through my arm. (I’ll be looking at whether or not I should get a port-a-cath again to prevent messing up my veins and looking like an addict.) I started at the infusion center at 9:00a and didn’t get out until sometime after noon, but it will get quicker the next few times and eventually will just take about 30 minutes to check my counts and then 30 minutes for the infusion. Again, not bad.

So next steps will be waiting and watching blood counts. With the combination of last week’s chemo and today’s infusion, it’s expected that sometime next week my blood counts will drop. We’ll see what happens!

I hope you all have a great Thanksgiving. I look forward to a visit to see family in Omaha.

I also want to send a HUGE thank you to all of you for the kind words, well-wishes, prayers, soups, banana breads, pumpkin breads, egg bakes, tater-tot hot dishes, cupcakes, and ready-to-mix mashed potatoes. For those nights where I’m tired, I’ve not had to worry about what to eat for dinner (or dessert!). So thank you.

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. :)

Just a quick update to share an interesting article that ABC News wrote about a few childhood cancer survivors and the importance of follow-up care as we’ve grown.

Click Here

Also – just an update to let you know that I’m still working on additional scans. It’s been a bit difficult to get things lined up between my doctors in Houston and Minneapolis, but I’ll keep you posted once I get those results. Stay tuned!

Take care!