Oct 11 2012

Survivor Spotlight – Maddie Hayes

Maddie Hayes
by SCTA Volunteer Joanne Glosser Jaeger

Maddie was originally diagnosed when she just turned 7 with a Pilocytic Astrocytoma at T7-T12. Her surgeries were in May 1998, October 2000, and July 2003. All surgeries were performed at Oregon Health Science University in Portland, Oregon. Dr. Joseph Piatt did the first one, and Nathan Seldan the last two. She has had physical therapy in-patient at Legacy Emanual Hospital in Portland, anywhere from 1 week to 1 month, depending on how the surgery affected her legs. She had one year of Chemotherapy,

but that didn’t reduce the size of the tumor and surgery was performed. As a result of her tumor and the surgeries, she has severe scoliosis and surgery to have rods down her spine is imminent, probably this winter. She has MRI’s every 3 months and is sedated since it takes 2 hours to do the entire spine. December is another MRI and that will tell us if the tumor is showing any growth.

Melissa on Maddie:

Maddie loves Cats and Kittens. She collects Beanie Babies, likes to take pictures and enjoys scrapbooking. Paints ceramics and like to hang out with her friends. She has a group of about 7 friends that accept her for who she is, invites her to parties all the time, helps her around school with her scooter and I’m very thankful for it. She has a good group of friends she hangs out with, not troublemakers, but honor roll students, just like herself.

We live in an Orchard; my Husband Randy for the past 21 years is an Orchard Foreman for the owner of Paasch Orchards. I work at the USDA Forest Service for the past 19 years. We both grow up in Hood River and have been married 15 years. We are members of the Hood River Alliance Church and are thankful for the support we get from our church pastor and body. Maddie continues to thrive in whatever she pursues,although, sometimes her walking can hinder her travels. She would like to be “like a normal kid”, and I don’t blame her. She is our only child.

Is Maddie basically independent physically? Does she still use the walker?

Maddie doesn’t use a walker but she does need a little assistance walking. She gets scared about walking in crowds or around people and always wants to hold my hand or dads. In school of course she gets around on her scooter, but still needs assistance to open the doors and to help her up the stairs, which the scooter cannot go. Around the house she pretty much goes everywhere by herself without any assistance.

Melissa on Melissa:
I work full time at the Columbia River Gorge National Scenic Area, which is also the Forest Service. I do a little of everything. Been with the FS for 19 years going on 20, and have been in the Timber department, engineering, front desk, computers. At the present time, I’m supervisor of the frontliners at the front desk, work on Accounting for our Fleet, and do Personal Property that the FS acquires and needs to be tracked. I’m an avid photographer and love to take pictures, also love to scrapbook. My sister has been a Creative Memories consultant for 10 years and that’s how long I’ve had this addiction of scrapbooking. Maddie is also into it and makes some beautiful pages. I think of vacations & outings just to take pictures!

Small Town support:
Since the beginning of her diagnosis 6 years ago, we have always had a huge support from our church, friends, family and the community. They have had fundraisers in all forms and have donated a large chunk for Maddie and her recovery.

The Conference and what it meant for them:

I have been corresponding with Amber for almost a year before the trip to Vegas. She has the same type of tumor as Maddie and we both can relate to the same symptoms and share the same stories. We clicked right away and it was so cool to finally meet her and her family in Vegas. We both got choked up and she kept giving Maddie hugs, which she didn’t mind. We also met so many others to many to mention that made an impact on us. The of the show was of course Dr. Jallo. We thought our surgeon was the best and we kept hearing everyone brag about Dr. Jallo. After meeting him, we knew why. He is very knowledgeable about what he is doing. He was interested in Maddie’s MRI’s so we sent them and he gave us some sound advice and was confident about his decision to watch it close and not to do the Scoliosis surgery unless there was more of a curvature. The other speakers were good, but really enjoyed talking with Dr. Jallo one-on-one.

How does Vegas compare to Oregon?
It was our first time to Vegas, and it probably will be awhile before we go back. I’m glad we went because I’ve always been curious, but it was soooo hot and dry and so many people, we were glad to get back home to green, cool Hood River County.

Maddie herself:

What grade are you in?

What is your favorite subject in school?
Sign Language, because it’s relaxing, fun and I want to learn it to get a good job.

Do you get to use sign language much in real life?
Yes, because I could meet a deaf person in the store or anywhere and they might need help.

Is it hard to learn?
No, not once you take it for 2-3 years like me.

Do you think it’s important for everyone to learn Sign Language?
Yes, defiantly. Because it will help you get a good job. It’s also good to teach to babies as young as one, so that they can communicate.

What is your favorite TV show?
Spongebob Squarepants

What are some movies you have seen lately that you like?
Panic Room and Shrek 2

How did you like attending the Spinal Cord Tumor Association conference?
I liked meeting the people who had tumors like me.

Did you learn a lot there?
Sorta. I liked Las Vegas

How do you like getting around on your scooter?
Yes I do, its fun to drive around.

Do you like to exercise?

What are some things you enjoy doing?
Collecting Beanie babies and miniature bobble heads.

What kinds of books do you like reading?
Suspense and thriller

It sounds like your family has a camper and goes camping a lot. How do you like that?
It’s fun because it gets you out of the house and its fun to go to different places and camp.

Do you live in a small town? Have you ever been to big cities?
I live in a small town and I have been to big cities like Las Vegas and Sacramento.

Can you tell me about how it is where you live?
The weather changes a lot and not much goes on.

What is it like to live on an orchard?
It’s really cool to live in an orchard because you get to help them a lot. They grow pears and apples and peaches. I like them all. I also get to drive my scooter, my golf cart and my dad’s gator in the orchard. My friends cannot do that because they live in town. I’ve been driving since I was 6.

Tell me about your mom and dad. What makes them great parents?
They are loving and helpful to me with my homework.

What is your favorite dinner?
Mac & Cheese

Favorite dessert?

Do you have pets?
Yes, I have 4 cats. Shadow, Callie, Lucie and Shrek.

Have you missed a lot of school because of your surgeries?
Sometimes, but its not hard to get back into it.

Do you ever get depressed? How do you get through it?
Watch TV

What makes you the happiest?
Real babies and cats or kittens.

Do you have chores around the house?
Not regularly, just when I want to do them.

What do you want to be when you grow up?
Maddie wants to have her own Day Care Center for kids/babies. She loves babies and anything that surrounds a job around them she would want. I suggested a Neonatal Nurse and she thought maybe, although she would have to be on her feet all day. She also has suggested being a Pre-School or Kindergarten Teacher. Again, anything to do with kids.