A memorial scholarship fund has been established by Casey’s long-time friends Laura Bauer, April Doering, Kristen Fischer and Lisa Cavallari. The goal of the scholarship is honor Casey and to raise funds and establish opportunities for students interested in joining the Mankato Area 77 Lancers.

From 1994-1995, Casey was member of the Lancers, an organization that upholds those traits Casey inspired in his daily life: spirit, strength, perseverance, and friendship.

To learn more about this scholarship, please view the poster and see the Mankato Lancer’s website.

If you would like to contribute, send donations to:
77 Lancers Parent Association c/o Community Education
110 Fulton Street
Mankato, MN 56001

Please make checks payable to:
77 Lancers Parent Association (501c3; Tax ID #41-1677111)
Memo – Casey Quinn Scholarship Fund
Memorial account at Bremer Bank in Mankato

Visitation will be 5-8pm on Thursday, March 31 at North Mankato Mortuary – Northview, 2060 Commerce Drive, North Mankato, MN, and continues one hour prior to the service at the church on Friday.

A funeral service will be held at 11am on Friday, April 1 at Holy Rosary Catholic Church, 525 Grant Avenue, North Mankato, MN.

Memorial donations may be made to either of the below programs. Please include Casey’s name with your memorial gift.

MD Anderson Cancer Center
Dr. Strong’s Li-Fraumeni Syndrome study
P.O. Box 4486
Houston, TX 77210-4486
www.mdanderson.org/gifts

Rehabilitation Ski Trip-Unit 87
Children’s Cancer Hospital
M. D. Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030-4009

The Rehabilitation Ski Trip was close to Casey’s heart. He had an amazing experience 2 years in a row on this trip. Read more about his experience and view his ski trip photos.

Funeral service arrangements will be announced in the next day or two. Dates and details will be posted here shortly, so please check back.

The doctors say Casey cannot put any weight on that hip or use his prosthetic leg for 4 -6 weeks. He will need to focus on his hip recovery during this time, which means that his chemotherapy needs to be put on hold until his hip is better.

For the next few weeks, Casey will be staying at Sister Kenny Rehabilitation Center, which is an in-patient rehabilitation facility located in Abbott Northwestern Hospital. There, he will be will be doing therapy for 3 hours every day, Mondays – Saturdays. The staff there will be helping Casey to recover from the hip fracture, work on his speech therapy, and learn how to cope with many of the new challenges that face him. He will also continue hyperbaric oxygen therapy each morning.

The next few weeks in therapy are going to be incredibly challenging for Casey. Your continued support through outreach, thoughts and prayers are always hugely beneficial to Casey.

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!)

Sorry for the long delay. We’ve been through a lot over the last few months, beginning in November. Casey started having problems with his speech and reading abilities and it was necessary for him to go on short-term disability. He’s been living with us in Mankato as at this time cannot live by himself.

Just want you to be aware of a benefit being put on by Proximity/BBDO.

WHEN: February 13, 1-4 pm
WHERE: Elsie’s Bowling Center
729 Marshall Street NE
Minneapolis MN
WHAT: $20/person or $30/couple (kids are free)
(gets you two games of bowling, shoes and snacks

Plus, there will be a Silent Auction offering tickets, trips, art, restaurant gift cards & More

CAN’T MAKE IT? Cash donations may be sent to:
Casey Quinn Benefit Fund
US Bank
Midtown Exchange Office
2929 Chicago Avenue, Suite 199
Minneapolis MN 55407

Thanks for your support, thoughts and prayers for Casey. He’s unable to use the computer without assistance but still appreciates hearing from everyone and hopes to see improvement quickly.

As usual, summer is flying by. It felt like a few hours ago that I was eating tasty food, visiting museums, seeing the sites and hanging out with Jill & Ben in the quaint cafes of Paris. We had a fantastic vacation… something we all needed this year. We were there for 10 days and went basically non-stop from the moment we stepped off the plane. (Except an occasional nap on my part.) Museums, monuments, parks, palaces, the Eiffel Tower, amazing restaurants… one after another… and we felt like we barely scratched the surface. I also got to see my friend Preston who lives there. It was a great time.

See more photos here.

Suddenly I was back at work, busy catching up from being out of the office, knowing that soon I’d be out once again for a visit to Houston.

About a week before my scheduled appointments, I received a call from Dr. Wolff’s nurse. She was calling to inform me that Dr. Wolff was no longer with M.D. Anderson. “What??” I was shocked. According to her he had landed a wonderful opportunity with a center in Boston, and was originally scheduled to still see me but had to make a change in his plans. She went on to ask if I still wanted to visit for my appointments. It was my annual/full checkups, added to the fact that I’m still on chemo, so I didn’t understand why that would even be a question. Of course I needed to go! I flew down last Tuesday, and in starting my appointments quickly found out that Dr. Wolff was able to stay through the week afterall. Phew!

As mentioned, I was not only there for the standard brain scan, but also for what is now my annual visit for the more extensive testing where we check more of my body for potential tumors and recheck the old areas. As a result, I spent 3 days in tests rather than the normal 1 day.

On Wednesday I went through a bone scan, an electroencephalograph, blood work, and an MRI of my brain and neck. Thursday continued with an ultrasound of my abdomen, and two very lengthy MRIs of my abdomen and pelvis that lasted until 10:00pm. And Friday ended with more blood work, two more MRIs (t-spine and l-spine), and finally visits with both Dr. Slopis and Dr. Wolff and a surprise stop-in by Dr. Anderson.

In a period of three days I spent almost 6 hours in an MRI tube, had 5 needles in my arms, sat on other tables for other tests another few hours. It was crazy, but surprisingly simple at the same time — I’ve decided to use this as my annual visit for this reason. As a cancer center, M.D. Anderson has more ability to check so many areas with so many different scans for different cancers in one simple getaway. Efficiency is fun!

Perhaps you can already tell, but the results were good. Of all the tests there are only two items worth mentioning:

1) The MRI of my abdomen showed what is likely a cyst on one of my adrenal glands. It is not of any concern to the doctors.

2) The tumor in my brain is appearing exactly as it did two months ago. No growth! (Though no shrinking either.)

Given the results of all these tests, the conversation quickly turned to my chemotherapy. I’m on cycle 9 right now (starting last night), and am scheduled to go at least through October. So — how much longer? Dr. Wolff has frequently used three simple questions in what would warrant stopping treatment:

1 – Is the chemo no longer working? No, it’s working, so keep using it.

2 – Has the chemo reached dosage limits or become toxic? No, I generally feel good, so keep using it.

3 – Has the tumor gone away or no longer cancer? We’re not sure, and can’t easily tell, so keep using it.

So that’s the answer for now. I’ll just keep taking it until one of those happens (obviously we hope for the 3rd). And if you asked me before I started this chemo if I’d be okay with that, I would have said HELL NO. But given the simplicity of it, and the success thus far, I’m alright with it now.

As I mentioned, Dr. Anderson popped in while I was with Dr. Wolff to say hello and check how things were going. Dr. Wolff excitedly told him the news and pointed out that it’s been 10 months with no new signs of new or existing tumor growth. He reminded me (and in some ways pointed out for the first time) how lucky that makes me given the success rates of people with my grade and type of tumor. Quite simply, I’m beating the odds. I  guess it just made me that much more grateful for having that team to help me.

Unfortunately while all of this was happening I was remembering that Dr. Wolff was leaving. It was my last appointment with him! As it turned out, I was his very last appointment as an M.D. Anderson doctor. I hope he sees the success in my treatment as a great note to leave on, and wish him so much more success in Boston.

Strangely, going through all of this treatment has almost been therapeutic lately. I’m a member of the Anderson Network which has also given me the chance to work with other patients in the early stages of their treatment, getting to talk to them about their fears, concerns, laughs, awkward moments, etc.. There’s a lot of us, and I like that M.D. Anderson has these kinds of resources available, and I’m happy to help out.

Anyway, that’s the update. I’m off to take another dose of chemo and call it a night.

Hope you’re all well. Love you.

Where to begin? First, my apologies for the long delay in updates. As has been the case lately, work eats up a lot of time, and by the end of the day chemo has me exhausted. So at night instead of being social I’m either sleeping or watching Glee (or Nurse Jackie, or United States of Tara, or……. too much tv).

So what’s happened in recent weeks?

I had been on my standard chemo cycle, and completed round #7 earlier this month. Unfortunately, that same week I received an annoying reminder of my jaw radiation that I had over 12 years ago for osteosarcoma. As some of you may know, the radiation not only destroyed my skin and gums, but also the roots of the three teeth that were in its path. And in the years since then I’ve lost two molars, and each time they pulled the tooth there was very little left of the roots. Well, I was having some pain in the third tooth (the second bicuspid for all of you dental nerds). I went to an oral surgeon for an x-ray and there were hardly any signs of roots for the thing. Obviously I needed surgery, but when he went to pull the tooth, pliers in hand (and around my tooth), it took the slightest pull the yank the thing out. There was nothing holding it in. Still, I had to deal with the annoyances of the surgery, plus extra antibiotics and gargley mouth washes since I’m already on chemo and really shouldn’t be having surgery of any kind.

The recovery was basically fine, but this little interruption did cause a bit of delay in the chemo cycle. Given the risks, my doctors decided it best to hold on two Avastin cycles. As a reminder, Avastin’s job is to cut blood supply to the tumor. Obviously cutting blood supply to a healing wound would not be good! So I should be going in tomorrow morning for Avastin, but instead will just be getting blood work to get me set for chemo round #8 next week.

In the meantime, life has been zipping by. The weekend after the tooth excitement was Mother’s Day weekend. Mom and I flew out to be with Jill & Ben (and Ruby). It was a short getaway for me — only three days — but still nice to be out there. Mom was able to spend a few extra days. We got to spend some time out in the beautiful weather, including a round of frisbee golf in Golden Gate Park. I hate to brag, but I seriously kicked ass. I had the highest score! When I threw a frisbee right at mom’s back… fifty feet away, to my left (not even in front of me)… I knew it was going to be bad. Seriously, I am horrible. But we had plenty of laughs!

I flew back on Monday for a couple days of work and then was off to Houston that Wednesday. This was one of the shortest visits in time spent actually in tests. It was pretty much just blood and an MRI, followed by visits with Dr. Wolff and two student doctors (one of them actually Dr. Wolff’s daughter!). All tests turned out well. The MRI showed no changes since the last one in March — a good sign. With the tests going so quickly I was able to spend a bit of time relaxing — dinner with my friend Mark, a screening of How to Train Your Dragon (which I recommend), checking out some new restaurants, and of course, ice cream at Amy’s. I’ll be going for a much more extensive series of tests in July.

And now already a week has passed since I got back! This week was back to the busy world at work. But I was able to also spend some time finalizing an upcoming vacation with Jill & Ben. We’re going to spend about 10 days in Paris next month! I cannot wait for the getaway. With few small exceptions, it seems the only time I’m away is for medical reasons, which is NOT vacation! So we are counting down the days!

Hope you are all doing well!

Love,

Casey

Just got back tonight from another visit to Houston. I flew down on Wednesday night on what has become the same set of flights as almost all of my visits to M.D. Anderson. Upon arrival I was given a gigantic, white police car (i.e. crown victoria) to drive around instead of the tiny economy I usually order if I rent a car. And thanks to the Houston Rodeo I had to stay in a hotel much farther away, in an area of the city I had never been to.

Traffic was a nightmare thanks to the rodeo, shut-down lanes of freeways, a flipped-over semi, the standard traffic of Houston, etc., etc. Instead of the usual 5 minute ride from the hotel to M.D. Anderson, it took about an hour each morning. Yuck.

On top of these stresses of Houston, I was also on Round 5 of my chemo cycle. Managing the travel, making sure I was taking chemo and appropriate prep and follow-up pills, along with the usual seizure pills seemed a bit of a challenge this time. Most people who are going through or have gone through chemo treatment will mention memory issues as a top side-effect. It’s called chemo brain, and lately I’ve been noticing it a lot more. I have more frequent issues with memory and definitely have a lot more days where I’m just exhausted. My head is just a bit cloudy.

Luckily the appointments and the results they provided were much clearer. On Thursday I went through an EEG, blood work and an MRI, and met with Dr. Slopis and Wolff on Friday. My blood results are great, even though I’m going through treatment. All critical counts were in their average ranges. And my MRI came back with much the same results as the last visit. Comparing it farther back, it’s clear the tumor size is definitely smaller than the pre-chemo version (taken back in November). Very good news.

Getting back to the memory, energy, seizures, headaches and other symptoms — I spoke with Dr. Slopis about this again. Obviously a lot of it was expected, and some of it came about by very unexpected personal stresses this winter, but too much of it is coming from more controllable stresses. So I’ve got some things to work on (and NOT work on) to help alleviate some of those side effects.

Spending time with family seems to be a great help, which leads to the photo above… Aunt Kathy, Uncle Dave and my cousin Tony came up to visit a couple weeks ago. It was great to have them up for a fun weekend of food, shopping and site seeing.

Hope you’re all well. Love you!

Casey

I’ve just finished round 4 of chemo. Like the previous three, there really wasn’t much to report on. Tomorrow morning I go in for my infusion and have the day off to relax and catch up on sleep. My next doctor appointments are scheduled for early March in Houston. I’ll have more news then!

Hope you’re all doing well.

Love, Casey