Hearts of Hope for a Cure

Our Mission

To raise much needed awareness of

Childhood Cancer by providing products,

resources and facts to the public. 

In loving memory of our hero, Seth Becker

8-16-05 / 12-30-07

Our 2 yr old son Seth was diagnosed with a stage 4 PNET brain tumor. He fought bravely and hard for 8 months before earning his wings. He never lost his smile or joy, and he shined with love, always. He is our hero, and he has changed so many hearts and lives in his short time on this earth.  We will continue to fight for childhood cancers in his memory and honor. He opened our eyes...and we will make it our mission to open more. Seths bus is now a Childhood Cancer fighting bus! We will raise awareness and bring hope and love and faith to those going through what we did. We will never forget, we will always fight!    

~~~

Please look through this site for information, facts, our story, pictures and more. I hope this site is helpful and informative.

If you have a HEART of HOPE or would like to share your story or leave a note of encouragement, please do so in  the Guestbook!

Please also visit our sister site for Awareness Products, Resources, our "HERO" of the month and more!

Awareness is the key to a CURE! Together we CAN make a difference!!

http://www.fisheykisses.com/

This site is still being made, so be patient please. I hope to make it a very useful site for parents with children diagnosed with cancer. I know the things I hit the web for when I first got my news....information, stats, and the peace of mind that I was not alone. I also needed info on funding for us as a family, with our growing needs finacially, and much emotional support too. I learned that families with children that have and are being treated for cancer are largly "unknown" to the real world. The fact that these families not only are dealing with devastating news, but they also face the burdens of loss of income and many added expences as well. The diagnosis of cancer goes far beyond the medical side...it affects EVERY family member in EVERY aspect of their lives. I strive to make this unknown horror a little easier on someone else, and I also hope to raise some much needed awareness of all the needs of these families and children in the process.
I am still working on the site, please be mindful of that. I tried to open as many areas as I could temorarily, but check back ofton, and I welcome your comments. Please visit the "angels" section, and send me your beautiful angels, so I can honor and remember them.

Brianna's Story

Brianna was diagnosed with a brain tumor prior to her birth.  While a routine ultrasound showed that her twin sister, Alexis, was developing fine - Brianna's head was way too large.  A follow-up MRI, done two months before the twins were born, confirmed the tumor.  Brianna had surgery to implant a VP shunt to control the hydrocephalous when she was three days old.  The doctors made the decision to "watch and wait" regarding the tumor.  They felt Brianna was too small to survive tumor removal brain surgery at that time. 

When Brianna was five months old, an MRI revealed that the tumor was growing and it had to come out.  She had the tumor resection surgery on her six-month birthday.  The pathology determined the tumor to be a high-grade (aggressive) mixed glioneuronal - an extremely rare tumor.  Brianna is the youngest ever diagnosed with such a tumor.  She began 70 weeks of chemotherapy when she was seven months old. 

Chemo was very, very difficult.  During the next 16 months, Brianna spent a total of 72 days in the hospital due to complications.  One such complication was that after just two months of chemo, Brianna developed mouth sores and refused to take her bottle (or anything else for that matter).  After a temporary trial period with an ND tube for feeding, Brianna had surgery, again, to get a permanent g-tube placed.  She is still 100% g-tube fed today.

In March 2009, Brianna completed chemotherapy treatment.  All MRI's since then have been clear.  She is officially a two-year cancer survivor!!!  However...

Brianna has many other medical issues that she still lives with and that will always be part of her life.  She was diagnosed with cerebral palsy before her first birthday.  At almost three-years old now, she still cannot sit unassisted, has very little head control, can't scoot, crawl, or walk, and doesn't talk (though she's very vocal).  She is also legally blind.  She can distinguish between bright and muted colors and responds to light and shadows, but she is unable to track objects or see well enough to reach for things.

Additionally, Brianna has a seizure disorder and has suffered a number of large clonic-tonic seizures that have lasted longer than half an hour in duration.  Two such seizures have resulted in hospitalization and collapsed lungs.  She hasn't had a large seizure in a couple of months, but still has periodic small focal seizures.  Thankfully, there has been a decrease in the frequency of these seizures as well in the past two months.

It is possible that the reason for the decrease in seizures has something to do with Brianna's tracheotomy that she got on January 4, 2010.  Brianna has always had some difficulty breathing from time to time, but in December it had gotten much worse.  A few days after Christmas, she was hospitalized in respiratory distress.  A scope revealed that her airway was collapsing and that she also had a condition called broncheomalacia.  She spent 25 days in the hospital.  Fortunately, the trach has opened her airway and she breathes great now.  She is attached to humidified air and oxygen at night, but does fine on room air during the day.

Brianna receives physical therapy, occupational therapy, speech therapy, and vision therapy every week.  She has a stander, a wheelchair, and quite a bit of therapy equipment.  Her grandparents (whom she lives with) are in the process of getting her a Sleep Safe bed (just waiting for insurance approval).  They would love to get her a Kid Walk gait trainer, as she has been "walking" on a treadmill (harnessed and with a lot of assistance) at physical therapy.  The Kid Walk would give her more "walking" practice at home.  But, nothing happens quickly.

Still, that's okay.  Brianna has taught all those around her the true meaning of patience.  And, she is love and joy personified.  She has a smile that can light up a room and she is the greatest snuggler in the world.  She is also the bravest person I've ever met and a hero in every sense of the word. 

Julie - Brianna's Grandma

 

www.caringbridge.org/visit/briannamoore