Oct 11 2012

Survivor Spotlight – Scratch and Help

Scratch and Help Fundraiser Participants
By SCTA Volunteer Joanne Glosser Jaeger

Melissa & Maddie Hayes, Hood River, OR. Maddie has an Pilocytic Astrocytoma T7-T12, 4 surgeries including titanium rods for Scoliosis caused by the Tumor. Mom and daughter both love to scrapbook and family loves to camp. Maddie and family attended the SCTA conference in Las Vegas, 2004.

Debbie McDaniel, Monroe, Michigan. Married to James and has one son-James. Hobbies include cooking and exercising. Debbie says “My husband and I attended the very 1st conference in Florida. To be around others that could relate to you and how you feel and how they handle different situations was great.”

Carol Ogsbury, New York City. Carol is single. Hobbies include travel, theater, art, etc.

Lynn M. Dorundo, Landisburg, PA. Lynn says “I am married to my wonderful husband Ed, and I have two 4-legged children. My girls are Rottweilers – Chessa and Bella. I have one younger sister. I’m also close with my husband’s family as well, and there are lots of nieces and nephews. Hobbies include spending time with my husband and dogs, SCTA, reading, writing, movies, crochet, the list goes on. I never have enough time to do everything though. This will be Lynn’s first SCTA conference. “I couldn’t attend the Las Vegas conference because I broke my arm. Baltimore will be my first and I am very excited.”

Ida Bostian, Central California (near San Jose). Married, no kids – Ida has a spoiled dog and cat. Hobbies include traveling, reading, sailing (just started!), studying languages, and genealogy. Ida has attended both of our prior SCTA conferences.

Cathy Martin, Euclid, Ohio, a suburb east of Cleveland, Ohio. Has a wonderful husband, Chuck, who is an electrician. Have a great daughter, Jennifer, who is a Junior in high school. Two pets: a dog, Timber, and a cat, Jinx. Hobbies include photography, crocheting, baking, and gardening. Cathy has never been to an SCTA conference.

Kevin Strong, Long Beach, California. Married with four children. 3 boys and 1 girl. Ages 21, 19, 16, and 14. Last one is a girl. On June 12th will be married for 24 years to wonderful wife Lisa. Loves to read and swim and be with family and friends.

What did attending a conference mean to you? What did you get out of it?

Melissa & Maddie: We really enjoyed meeting different people that the have been through similar surgeries and a few that have the same tumor as Maddie. We enjoyed the speakers and walked away with a lot of good information from them.

Ida: It was fantastic to meet the other SCT survivors and to make friends that I believe will last for the rest of my life. The first conference (in 2002) was the first time since my surgery that I felt “normal” – it was amazing. It also took away a lot of the fear; I saw all these strong amazing people who were struggling but surviving, and it inspired me to do that to. The 2004 conference renewed that feeling. I also got a lot of great practical information at both conferences: I am terrible with anatomy, and really all medical terminology, and often don’t feel like my doctors have enough time to really go over the details of my condition with me (even the patient ones). At the conference, the medical speakers really try to explain the information in understandable terms, and that’s very valuable to me. I’ve also heard about different treatments, pain management techniques, etc. at the conference – some of which I’ve used. For example, at the 2004 conference a physical therapist suggested that some SCT survivors might benefit from PT even years after surgery – in other words, we all have PT right after surgery to get us “going” again, but usually we stop going after some weeks or months – after this PT suggested, I got a prescription to go back 6 years after surgery, and it’s made a huge difference in my pain tolerance, strength, etc.

What made you decide to participate in the fundraiser?

Melissa & Maddie: We will probably not be able to make this years conference, but we wanted to make sure the conference would be able go on and we wanted to do everything we could to make that happen.

Debbie: To help raise money for an association that has a lot of meaning to me. And to hope one day there will be a cure for spinal cord tumors.

Carol: I was impressed by all the work that goes into operating the SCTA, and knew that all funds would be put to good use.

Lynn: SCTA is an organization made of people. We’re literally from all over the world, and from all kinds of backgrounds. What has brought us together was the tragedy of our tumors but through that connection we’ve been blessed by the hope and support from survivors. Strengthening those connections and the support network we’ve created is important to me because it helped me so much. In addition to raising money for the conference I’d like to raise money to help SCTA grow.

Ida: I just wanted to help raise money for the conference and to encourage others to do the same. I believe strongly in SCTA’s mission as a survivor-run organization committed to offering support to each other.

Cathy: I participated in the fundraiser because I wanted to give something back to the SCTA. When I was first diagnosed, everyone was so supportive, helpful and most of all, understanding. Also, so much valuable information is available to us.

Kevin: I believe the website and the message board are doing a terrific job and I think the conference is a great idea. It gives me hope that in the future our lives could improve because of the research and persistence we show. And I believe the conference is a valuable resource for those who can attend.

How has the SCTA helped you?

Melissa & Maddie: Just the connection and network of people going through the same disease my daughter is going through makes us feel like we are not going through this alone.

Debbie: When I first was diagnosed I got on the internet and this was the first website I found. So just by logging in when you feel you are alone, you find there are other people out there just like yourself.

Carol: When first diagnosed, I had no idea what to expect, what to look for in a surgeon, or what questions to ask. The only place I found that information was here at the SCTA. Every day I’m inspired by Linda and many other members. Thanks to all of you.

Lynn: When I was first diagnosed, SCTA was the only place I found that gave me REAL information. I was able to find Dr. Jallo through SCTA. It was tremendously helpful knowing there were people out there who had walked the path before me. I received so much great information prior to my surgery I didn’t have too many surprises and being prepared is so important. Patient education is a big thing for me.

Since my surgery the people on the BB are also a great help emotionally. No one else knows exactly what we are going through. I also find comfort in helping other people. That’s another reason I have become more involved in SCTA and wanted to raise funds. It’s important to give back when we’ve been blessed so much. “Normal” people probably would think I’m crazy to say I’m blessed when I use a walker to get around, but I am truly blessed to have found SCTA and to have the love and support of my family and friends.

Ida: SCTA is amazing. I’ve met outstanding people, gotten so much hope, been able to feel “normal,” gotten lots of great information, and I see now that our efforts will help lead us to better treatments and hopefully a cure for SCT tumors. It’s so fantastic to take something negative and transform it into a way to do positive things for others, and that’s what this group does.

Kevin: Support, Information, and a place to feel at home.

What would you like to see the SCTA do more of in the future?

Melissa & Maddie: Get the word out to as many hospitals and other network sources that there is a support group that others can lean on for information and support.

Debbie: I think they need to just keep up doing the wonderful job they are doing for all of us.

Carol: I would like us to bring more awareness of SCTs to the medical profession as well as to the general public.

Lynn: I’d like to see more educating happening. Not just about the tumor itself but maybe about pain mgt, nutrition, physical therapy programs, etc. Once surgery happens we have the rest of our life to deal with the effects of the tumor and the surgery, so I’d like to know more about what to expect from my body in say 10 years, 20 years, and what types of things I can do to help improve function and more important to keep it.

Research is also a hot button issue and I always want to know more about what is going on in regard to advances in surgical treatments, but for those of us who are past that, I’d love to see an area on our website dedicated to the “latest” news updates on spinal cord injury research such as stem cells.

Ida: I’m glad we’re making more contacts with the medical community and generating interest in SCTs in that community. I believe this is necessary to find new treatments and a cure for SCT. At the same time, I hope we are able to maintain our small, “family” feel even as we grow and branch into these new areas. One reason is that I love the basic support SCTA members provide to each other – I want to see that continue for as long as there are SCT survivors.

Kevin: Continue to explore every avenue that could lead to the discovery of a cure or better outcome for those with an SCT. The interviews that have been recorded are great.

The SCTA ‘logo’ is “Strength, Hope, Victory”. Does this have any special meaning to you with your/ your loved ones struggles with a spinal cord tumor?

Melissa & Maddie: The logo “Strength, Hope, Victory” is very meaningful to our family because that is what this group is all about. We give each other Strength, Hope & the Victory to get through this together.

Lynn: I think that this is the perfect motto for SCTA. It works for each survivor and our group as a whole. While we go through our initial diagnosis and surgery we certainly need strength and hope as we strive for victory against our tumor. But I think this is a motto for everyday living for SCT survivors. We face challenges most people don’t even understand. And as for SCTA it’s a great motto because part of our mission is to educate and raise awareness about sct’s and work with the medical community to accomplish this. That mission is a large undertaking but with “Strength and Hope” we can achieve “Victory”!

Ida: Well, all three words make me feel brave, even in the really tough times, and I think it’s important to find bravery in yourself even when everything seems to be falling apart. The motto is also a strong statement about taking control of our lives again, to the extent possible. In other words, no one has complete control of their life, but having a SCT can make you feel like you have NO control, and that’s not true either. I guess the motto reminds me that I can make positive changes in my life no matter what’s happening with my tumors, and helps me to find my own ability to make those changes.

Cathy: The logo “Strength, Hope and Victory” has much meaning. It not only signifies the struggle with my spinal cord tumor, surgery and subsequent pain/deficits, but also my mother’s story. She is a FOUR-TIME cancer survivor and she is a great inspiration to me and all those who meet her.

Kevin: Keep fighting.