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Ayanna was five when we found out she had leukemia
It was the worst news. Dr. Lucas told us she needed a stem cell transplant. Thank goodness her older
sister Aliyah was a match. She's our hero. Ayanna's doing very well now. We wanna thank the Four Diamonds Fund and
Penn State Children's Hospital.
Four Diamonds helps us treat kids with cancer. Your support means we can provide the most advanced
care available. At Penn State Children's Hospital, we put your children first.
Thank you central Pennsylvania!
I was two, and I was like zero. We were in a car accident, but nobody got hurt. Mom says
our car seats kept us safe. Nurse Sue from the doctor's office checked them.
It's part of the Safe Kids Program thanks to Penn State's Children's Hospital.
When you contribute to the Children's Miracle Network you help provide advanced care
and prevention programs right in your own back yard. At Penn State Children's Hospital, we put your children first.
Thank you central Pennsylvania!
You're watching Brainstorm, on ABC27, presented by Penn State Hershey Medical Center.
Brain cancer can hit even the young. Amanda Martin introduces us now to one patient who's beat the disease.
Well, it started out, I thought I had a concussion from football.
When John Sangrey started getting headaches and nausea that lasted until noon,
he didn't think it was anything serious.
Yeah, we were doing some pretty rough drills that weekend. I just thought maybe I got banged up a little bit.
But it was not a concussion. It was a cancerous brain tumor the size of a golf ball.
I was kind of surprised and shocked at the moment, I guess it kind of set in throughout the weekend.
We just were like okay, now what do we do.
The Sangreys wasted no time. John had surgery at Penn State Medical Center, then radiation and chemo, and physical therapy.
That was his first mile that he did on the elliptical, that was his very first bacon cheeseburger after he could swallow.
John had to re-learn how to swallow. He worked on his speech, balance and his strength on the right side.
He has made major progress in just one year.
He has worked very, very hard, and he has had a very optimistic attitude about all of this, which
has been great, so he needs to be commended for what he has done throughout this whole thing.
I slowed down a lot and learned to enjoy life more. Now that I've been at the most horrible
part of my life, everything's better from that.
At Penn State Hershey Medical Center, Amanda Martin, for ABC27.
John's headed off to college soon, he wants to study speech pathology. He's a brave young man, you were his doctor.
I was.
He's got a little palsy on the right side of his face, that's going to go away? What's going to happen with that?
It should improve in the next year or two. Jonathan had a very aggressive malignant tumor
of the brain stem, it went right into the brain stem where the nerve that controls movement
to that side of his face comes out. We expect the weakness will get better, it's starting to look a little bit better.
You guys are incredible with what you can do. I mean do you wanna talk about stem cell research,
what's ahead with that, you think it's going to be done one way or the other?
I think it's up to the federal government at this point, I mean it's difficult to get access to stem cells,
I mean I know they're looking at some different ways to acquire stem cells that don't have the same religious and moral implications.
Or a private industry will just do it, do you think, if the federal government doesn't jump in?
If the government allows them to do it.
Didn't mean to throw that one at you, but it's a hot topic. We're going to have some more questions for you in just a moment.
First, Val's going to introduce us to a special guest, Val!
That's right, I am here with Sidney Butch, we're in the call center so you may hear the phones ring behind
us a little bit, but we're here with Sidney and her family, the Butch family. Anne, Pete, Celeste, Mom, sister Katie,
and first of all, Sidney looks like she's doing great, but you guys have been through some trials and tribulations
tell me about her type of brain tumor.
She had what was called Ependymoma, and she was just getting sick and was complaining about headaches
and neck pain and after a couple of weeks finally they did an MRI and found it and she had surgery to remove it.
And she was only two years old at the time, her prognosis?
Right now, she did have a reoccurrence in April, and she had surgery again, and they removed it, they
were successful, we did have a follow-up MRI in the middle of the summer that came up with no sign of any tumor.
And you said that's something that you will have to keep checking throughout her lifetime?
Yeah, she'll be checked with MRIs for the next few years, three times a year, and then after five years she'll go down to twice a year.
But, just a regular, typical four year old?
Very much so.
Now, how did--you went to Penn State Hershey Medical Center for your treatment--can you be a little bit
more specific about what they used to take care of the tumor?
That'd be a good question for the surgeon.
The gamma knife?
Well, she did have the gamma knife procedure done after both surgeries, that was kind of to I guess get
rid of any cancer cells that may have been left behind after the surgery, so that was kind of a trial thing to see if it worked.
Looks like she is raring to go. We got her to stay still this long, and of course we gotta thank Mom and sister for being here.
And you look good, do you feel good? Yeah? But you're not going to talk, are you?
No
Ha, I got you to talk. We wanna thank you all for being here, and again we wanna remind all of our viewers that
you can most certainly call in, the doctors are here to answer any of your questions, and that number is 346-3333
and as you can see they're very busy and we'll take as much time we we need to answer any question that you have. Alicia.
Yes, and we hope people will call, and we really only have about ten minutes left so
we're going to keep going and covering issues here. Dr. Sean is here with us, stories of
John and Sidney lead to our next question, which is what questions do I need to ask when my child has a brain tumor?
I think many of the same questions you need to ask for adults, but in particular I think brain tumors
should be treated by a comprehensive team that sees a good rate of brain tumors, that sees a fair
number of brain tumors over a given period of time. That sort of volume allows them to keep up on latest
developments and changes in practice and recommendations and treatment regimens.
Here's another question someone wrote in, it's kind of a long one, take a look at this.
My brother in law is currently undergoing chemotherapy for primary central nervous system lymphoma and is having a
dificult time eating after each treatment. He attempts to do so but says nothing tastes good. What can he do?
Is there some kind of nutritional drink he can use if he just won't eat?
Yeah, this is a common problem with chemotherapy, not just for brain tumors but for any kind of tumor.
There's a loss of appetite, there's a loss of taste and appreciation for food and taste and smell in general
There are some medications that can stimulate appetite, making things a little bit better in general.
There certainly are a number of commercially available nutrition drinks which provide a balanced intake of
certain nutrients, like proteins, carbohydrates, fats, that everyone needs. So that's a good way
to supplement inadequate oral intake.
Okay, we've got another question again about clinical research, so, it's another long one so we wanna show it to you.
Someone writes in: my father, who will turn 80 in December was recently diagnosed with Metastatic Melanoma of the brain.
He underwent full brain radiation with no results. He has turned down starting on the drug Timodar
due to the low result rates and the side effects. I have researched clinical trials for
his type of cancer. Are you aware of any tials that he may be eligible for?
There are some trials available for Melanoma. The problem with Menostatic Melanoma to the brain is
it doesn't respond well to conventional radiation treatments. It does respond well to single
fraction high dose treatments that we can deliver with the gamma knife.
But the traditional radiation treatments that you get for lung cancer, breast cancer, melanoma doesn't respond.
Timador is used because it is chemically similar to a drug called BTIC that is used for melanoma elsewhere in the body.
Timador gets into the brain in higher concentrations and I think is very well tolerated.
It's an oral drug, people usually don't have a lot in terms of side effects. And that might be a reasonable choice to try in this man's father.
We talked about, earlier, how obviously the brain effects everything and that's one reason brain tumors can be so scary.
What about affecting a person's emotions, or intellect, or personality, is this question.
Absolutely. The tumors can affect the brain function in any way. One of the ways is by displacing or compressing the brain
and affecting the function through pressure, the other is by actually invasion of the tumor into the brain
and directly injuring or affecting the pathways that conduct the electrical impulses.
One of the things our group is very forward-thinking in looking at is neurocognitive outcome
and personality changes in patients with brain tumors, we've got a number of ongoing research studies
to look at those things. It's a critical area in terms of quality of life. We focus so much on
survival and length of life, but quality of life is a very important factor.
And one of the doctors, I think that's here with you today is in your group, specializes, doesn't she, in the kind of
emotional changes, other kind of changes, that can happen when you have a brain tumor.
Yeah, that's Dr. Lena Grace, and she's a national expert, a leading national expert in
neurocognitive outcomes in brain tumor patients.
And you talk about the research, I mean, you guys are all doing a lot of exciting research at Penn State.
Well, I think it's exciting, I'm excited about it. Dr. Connor's lab has a lot of very progressive ideas
and treatments for malignant brain tumors, and there's a lot of research in the institution in general.
Didn't the cervical cancer vaccine--I mean, obviously that's not what your group would focus on, but
I mean that came out of Penn State, didn't it? I think so.
Penn State Hershey? Okay. Well let's take a break and then come back and do more, coming up
help for people who care for a brain tumor patient, we'll be right back.
Brainstorm, on ABC27, is presented by Penn State Hershey Medical Center.