Pediatric Brain Tumor Foundation
Supporting the search for the cause of and cure for childhood brain tumors
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Founded:
1991
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Suzanne
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Wall PhotosCreated about 5 months ago
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Pediatric Brain Tumor Foundation

 
Lisa Crognale

Lisa Crognale I have a nine year old son who was diagnosed with Medulloblastoma this past March.
In the middle of chemo now. it is hard to see him in so much discomfort. He has Autism as well, and cannot verbalize what he is feeling. Wishing chemo was closer to being finished for him.

Fri at 10:53am · Report
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
Lisa, you are undoubtedly the best advocate for your son, so it is important that you get the support you need. Please let us know how we can be of help to you. Pat Korpik (pkorpik@pbtfus.org)
Yesterday at 8:49am
Andoni Schultz

Andoni Schultz
I was diagnosed with a brain tumor when I was three years old. I have had multiple tumors, cycts, and shunt moufunctions in the last 15 years. In the past few years I have become very involved in my towns Relay For Life and have become one of the top fundraisers. I feel that i have been through a lot in my life and ...I hope that with the help of the Pediatric Brain Tumor Foundation, one day there will be a cure for brain cancer.Read More

November 3 at 5:47pm · Report
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
You have been through much more than your share, Andoni. If there is a Ride For Kids Event near you, you may enjoy that as well. It is so good of you to want to help others. Pat Korpik(pkorpik@pbtfus.org
November 4 at 5:31am
Tammy Palmer

Tammy Palmer How do I become a fan? I also would like to add a link to my wall.

November 1 at 9:54am · Report
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
You already are a fan, Tammy! Thanks so much for your interest. Pat Korpik(pkorpik@pbtfus.org)
November 1 at 4:39pm
John Xenos

John Xenos R.I.P Mike. Thanks for all your hard work.

Tammy Gierke Soderling

Tammy Gierke Soderling My son was diagnosed with a Astrocytoma that involves his optic cyasm and is located just above the hypothalamus making it inoperable. We were told that because of his short term memory loss he would never be able to live independently. He is now an A-B student at UW Whitewater WI and will hopefully be graduating in May 2011 as a Special Education Major. We are blessed.

October 29 at 8:35pm · Report
Tammy Gierke Soderling
Tammy Gierke Soderling
He was diagnosed at the age of 16 and is now 24!
October 29 at 8:36pm
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
Tammy, your son's interest in teaching those who have learning difficulties is truly inspirational. Thank you for the encouraging words. Pat Korpik(pkorpik@pbtfus.org
October 30 at 6:10am
Sandra Kleiser Black

Sandra Kleiser Black My infant daughter was diagnosed with an immature teratoma July 2009. She's 5 months old now. Her oncologist tells us there are only 7 other cases like hers. Are any of you out there?? Can we chat?? www.caringbrige.org/visit/naomicaroline

October 29 at 6:45pm · Report
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
I hope you are able to make the connection you are looking for Sandra. If not, please know there are other parents who have shared your journey in many ways. Pat Korpik(pkorpik@pbtfus.org)
October 30 at 12:57pm
Sarah Fountain

Sarah Fountain
I'm so glad I've found this group. My son, Daniel, was diagnosed on Tuesday with pilocytic astrocytoma. He's 6 years old. I'm scared to death and trying to take things one step at a time but its so hard!!!! Reading all the stories below gives me great hope that he's gonna come out of this just fine.
Thank you Pat for ...our very comforting talk today, you helped me think a little more clearly and I feel much more prepared for tomorrows appointment with the surgeon.Read More

October 29 at 3:08pm · Report
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Andoni Schultz
Andoni Schultz
Your son is in my prayers. I was diagnosed when I was 3 and I am now 19. I hope your son will fight on and win the battle.
November 3 at 5:52pm
Massimo
Massimo
My daughter was diagnosed on a Tuesday with pilocytic astrocytoma and she went through surgery two days later. She was 3. It was hard, but, even if she had to go through surgery again due to a residual from the first surgery, everything turned out fine. She is 9 now. Daniel and your family is in our prayers.
November 3 at 6:34pm
Brian Traynor

Brian Traynor I wanted to let everyone know that there is an event being held by a professional women's group called "simplyWOW" in Indianapolis this weekend. They are donating a very large portion of their proceeds to The Pediatric Brain Tumor Foundation http://simplywowexpos.com/?page_id=31

Kristie Russitano

Kristie Russitano
I would like to thank those of you that continue to post stories of your loved ones being -1,5,10 and 20 years in remission. It helps those that are newly diagnosed to find that hope to grab onto. My son is 8 and we just passed the 1 year mark of diagnosis (astrocytoma on the brainstem) and the 1 year of his surgery.... We continue to go through chemo - we started in December '08 and we are on schedule to end in February '10 - it's been a long road but we continue to have the faith.Read More

October 25 at 7:59am · Report
Juliana M. Smith
Juliana M. Smith
Congrats for reaching that milestone!!! I will reach the 5 yr. mark next spring.
October 25 at 11:35am
Sue Ruplinger
Sue Ruplinger
Our son reached the 3rd year mark and they say with each passing year the chances of the brain tumor returning decreases.
October 29 at 5:21pm
Caren Castle Stevens

Caren Castle Stevens Yesterday was the one year mark for my 9 year old with an astrocytoma on the brainstem and cerebellum to be stable. God is sooooo good to us.

October 21 at 6:07am · Report
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
There are good years, and GOOD YEARS! Thank you for sharing that Caren. Pat Korpik (pkorpik@pbtfus.org)
October 21 at 1:33pm
Andoni Schultz
Andoni Schultz
My name is Andoni Schultz and I am 19 years old I was diagnosed when I was 3 and God has been with me my entire life through surgery and my fight. I am glad God has been with you also and will continue to be by your side.
November 3 at 5:55pm
Kristen Chapman

Kristen Chapman
Hello! I am so thrilled to find something like this! My husband and I just learned about 3 weeks ago that our 2 and half year old son has Ependymoma (grade 2). He had a successful surgery and removed the entire tumor. We are meeting with an oncologist on Thursday to discuss two options: traditional radiation therapy or... proton therapy. I need some advice on radiation and how it can hurt 2 and half year old boy with his brain development. My son has NO neurological problems. Please help and advise! THANK YOU!!!!!!!Read More

October 20 at 11:26am · Report
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Andoni Schultz
Andoni Schultz
I had radiation when I was 3 and I am now 19. I hope that everything goes well for your son. He is in my prayers.
November 3 at 5:57pm
Claire Elizabeth Cross

Claire Elizabeth Cross has anybodys child been affected by a Choroid Plexus Carcinoma - brain tumor?

October 20 at 6:59am · Report
Jill
Jill
Yes, my 6 year old was diagnosed with Atypical Choroid Plexus Carcinoma 4/18/08 when he was 4yo.
October 29 at 4:34pm
Shannon Anselm Pate

Shannon Anselm Pate
My son had an Ependymoma (grade 2) at age 4, fourth ventricle, successful surgury followed by radiation to tumor spot. Now 10, another one (grade 3), lateral ventricle, again great surgery, now he's going to do full cranial spinal radiation. Anyone out there who's gone through this? I'm looking at the side effects o...f full radiation to head and spine, and also someone who's had a recurrent ependymoma. I know no one and have no one to talk to about this that has gone through this.Read More

October 19 at 7:16pm · Report
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Carolyn Tyree
Carolyn Tyree
Kristen, I posted it on my wall. So you can go there and read it. It is to lengthy to post here. Just search my name and it is on my profile. Good luck to you and I have you in my prayers.
October 21 at 6:48am
Eden Lyn

Eden Lyn
Samantha and I went to our first PBTF Ride for Kids yesterday, 10-18, in Cardiff, Ca., and we had the best time ever. What an amazing, moving, and uplifting event. We were surrounded by the biggest hearts I've ever met and it was truly an honor being there amongst them. Samantha was one of 9 survivors there and I have... to say that these kids have strength beyond belief and with all that they have been through and continue to deal with as a result of brain cancer, they live life as best they can and they make the most of it...all the while with the biggest and most beautiful smiles on their faces. I want to thank you, PBTF, all of the riders, volunteers, the doctors, and sponsors/supporters, for doing this for our children. We wouldn't be where we are today without all of you. Our family will attend each year and we will do as much as we can to support the cause as well. We will remain forever grateful :)Read More

October 19 at 1:03pm · Report
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Brian Tinkler
Brian Tinkler
Eden,
I'm glad you and Smantha had a great day with us "bikers". It means a lot to us to meet the young people we work so hard for. Photos have been posted to http://www.photosbytink.com/RFKSanDiego2009/
Enjoy!
TINK
October 20 at 10:03pm
Patty Franklin Baxter
Patty Franklin Baxter
Those pictures are awesome.
October 21 at 7:38pm
Krista Gideon Lawrence

Krista Gideon Lawrence My 2 year old son had a brain tumor removed on October 6, 2009. We found out today that it is a Ganglioglioma with atypical features. Not sure what all that means but hopefully we'll find out on Wednesday. It is so good to find PBTF and know that I am not going through this alone. If anyone has any info on this, please let me know.

October 19 at 11:13am · Report
Eden Lyn
Eden Lyn
Krista, I'm sorry that you and your son are having to go through this. I'm new to PBTF but have met some of the most amazing people since being here. I also belong to two yahoo groups for pediatric brian tumors which the parents on there have helped out tremendously. PBT is one and the other is LGgliomakids, we belong to both. I'm more than happy to help out when and if I can. Keep your thoughts positive and we'll keep you in our prayers :)
October 19 at 12:44pm
Char Johnson
Char Johnson
My prayers are with you and your family
October 19 at 2:32pm
Pediatric Brain Tumor Foundation
Pediatric Brain Tumor Foundation
I hope you find some good connections here, Krista. Our booklet "Questions for your Medical Team..." may be helpful to you now. Please see our website for the booklet, or request one be sent to you. 2 is far too young to be going through what your son is, but oh, can they be resilient. He will likely teach you and others a great deal. Keep us posted on how he is doing, and you! Pat Korpik, (pkorpik@pbtfus.org)
October 19 at 4:33pm