GONG Ceremony Amy Reflects on Ava’s Proton Radiation
The Jacobs family celebrates during the GONG ceremony signaling the end of Ava’s Proton Radiation treatments.
September 18 & 19: Folk Fest
In order to raise awareness and some funds for families fighting pediatric cancer, we will host a kiosk selling Buffalo Berry Crepe’s.
Where: Downtown Bismarck
What: Prepare crepes filled with Cool Whip mixed with Buffalo Berry sauce.
As we put this event together, here are a few things that we will need. If you can assist with any of the following, we would be grateful!
Resources required:
- 25 volunteers (not a definitive number)
- Coolers
- Crepe maker
- Ingredients (Milk, eggs, sugar, nutmeg, cool whip, Buffalo Berry Sauce)
- Wrapping material (to hand out crepes in)
- Signage
- Electrical service
- Pads to stand on
- Awning
- Musicians / Singers
We look forward to seeing you at the Folk Fest event. Come hungry!
The Story of Ava Brae
On Friday 3-16-07, Ava was transported via ambulance to the Texas Children’s Hospital in Houston, TX for emergency brain surgery. That day, she started a lifelong walk of battling with cancer. Ava’s story is a progression of victories and miracles, both small and large, along her path to survival…
Mom & Dad began building concerns for Ava about 6 weeks before her diagnosis. At just 13 months of age, she hadn’t learned to walk… and had regressed in her motor skill development (coordination and balance). Although she commonly attempted to stand, her legs and hips had become more and more “wobbly.” Also, she was favoring one side of her head, leaning that way to apparently find more comfort. On Friday, March 16 Ava was in to see her pediatrician for a routine “well baby” check-up. In reviewing her measurements, he noticed that her head size was in the 80th percentile for a 2 year old and in the 50th percentile for a 3 year old. Additionally, he observed some abnormal responses during vision testing. She was sent for a CT scan at a local ER where our worst fears were affirmed. We will never forget the terror of hearing the doctor in the hallway scream “Oh my God… do the parents know!?!” Ava was immediately transported via ambulance to the Texas Children’s Hospital in Houston, TX, where it was confirmed that she did have a massive brain tumor in her posterior cerebral cavity. The MRI estimated that in just one year her tumor had grown to consume approximately 70% of her cerebellum, or approximately 25-30% of her total brain volume. Her long-term probability of survival was estimated somewhere between 10-30%.
The tumor was successfully resected during a complicated 5 hour brain surgery on Monday, March 19. Given the size her tumor relative to her age, it was no surprise (although crushing) when Pathology reported on Sunday, March 25 her diagnosis: Classical / Nodular Desmoplastic Medulloblastoma (Brain Cancer of the cerebellum). Unfortunately, a significant portion of the tumor had already reached Grade 4, indicating that it had developed into the most aggressive form of brain cancer. At just 13 months of age, she would need AGGRESSIVE chemotherapy and radiation treatment. Without this, her prognosis was 100% terminal.
We learned from the Oncologist that this was all “good news.” It’s shocking to think that discovering brain cancer in your 1-yr-old baby could possibly be considered good news. The “good news” was that the Dr’s could attempt treatment. (There are other rare forms of brain cancer which cannot be treated at all.) We would soon learn that of all the ‘flavors’ of pediatric cancer, brain cancers kill more children than any other type of cancer. If Ava were to SURVIVE, she would need a minimum of 15 months of aggressive chemotherapy and radiation treatment. Due to her age at the time of diagnosis and treatment… if Ava were to THRIVE (walk, talk, develop normally etc.), she would need nothing short of a miracle.
Both chemotherapy and “local” proton radiation was required, even understanding that there would be permanent long-term developmental effects from exposure during this critical development time period. Due to Ava’s age, size, weight, and specific type of chemotherapy drugs, 4-5 days of hospitalization would be required for each treatment session, followed by 21 days of heavy out-patient chemo, medications, blood testing, and in-home nursing care. Getting a 13 month old to cooperate and “hold still” during a simple MRI or radiation therapy session would require general anesthesia for every single visit. Under the unbearable pressure of all that was to come, our family completely collapsed into the defensive mode of fighting for basic survival… with hopes that we could all stay together.
Without a clue of what was to come, Ava faced 2 brain surgeries… 8 ancillary surgeries… 13 months of chemotherapy… 2 months of high dose proton radiation to her cerebellum… non-stop nausea/vomiting/diarrhea/dehydration… countless central line placements & dressing changes… blood draws and tests… blood transfusions… IV lines… port access needle sticks… MRI & CT scans… lumbar punctures… anesthesia for almost everything… antibiotics… oral med’s… shots… constipation… Psychoanalysis…hearing tests… GI visits, allergy testing… all consuming over two years of this little three-year-old’s life.
Along the way, she faced her pain with complete and total trust in Mommy & Daddy. Most every single medical professional she met was left completely dumb-founded observing her ability to accept her sentence without a fight. Ava has been separately nominated as THE BEST PATIENT EVER by the Texas Children’s Hospital IV prep unit (who place IV’s for all TCH kids going in for surgery/radiology), the Oncology Group, and the Central Blood Laboratory. “Pink” she says when she sees her blood coming out from the tubes. For over two years running, this little girl hasn’t complained, fought, or even cried ONE TIME while facing IV needs, anesthesia, or surgery! Rather, she promptly says “Thank You!” after her torture session has ended…
Ava is renowned by all to be the most unconditionally loving little child that nearly anyone could meet. She carries an incessant happiness that is infectious to those around her. Her signature traits are her captivating ocean-blue eyes… her charming fair skin, her two left-hand middle fingers always in her mouth, her “tiger growl,” her lung-filling screech and giggle, and her famous “squeaker” shoes (which helped her learn to walk!).
Through all of this, Ava endured… and today her march onward continues. Literally against the odds, Ava has learned to walk, talk, run (with a little challenge), sing songs, play games, and behaves just about like every other 3 year old she meets. Although she faces a life-long road of future scans, tests, and side-effects from all the chemo/radiation…. she’s a cancer survivor. Her path has shaped her into one of the most determined little people you will ever meet. Along the way, our family learned what it is to FILL our lives with every waking second of every day. For our family, a life-blow as debilitating as this helped us to really learn to appreciate how fragile and precious life really is.
Today ~ Ava likes to tell everyone she meets “I’m a MEEWICAL!
Indeed she is…
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Click the following link to listen to the Song “Lullaby for Ava Brae,” written & produced just for our Ava!
Songs of Love -Lullaby for Ava Brae (90kbps)
LYRICS:
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A is for Adorable, This lovely little girl.
V is for our Valentine, with love we’ll fill her world.
A is for another word to add to all we’ve said.
Houston, Texas won’t you let us sing this sweet duet.
Chorus:
Sing a lullaby for Ava Brae
Sing a song of love, it’s Ava’s day
Sing a lullaby, for Ava Brae
Sing a song of love today
Minnie Mouse and Elmo, they’re her special friends
Minnie makes her smile, Elmo makes her grin
Hold her tight, keep her close, kiss her on the cheek
Fill her days with lots of stories, lay her down to sleep
Chorus
A is for a sister, Miss Adley is her name
V is for vivacious when Miss Ella entertains
A is for another name, yes Amy is her mom
She is daddy’s little girl and Jeremy is proud
Chorus
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Welcome to Brave Hearts for Kids
Help us join in the fight by getting involved, donating or simply sending your thoughts and prayers. 100% of all donations will go to families that are struggling in the fight against Pediatric cancers.
September 12: Kids Kickoff
Where: Sertoma Park – Shelter #7
Who: Honor young victims of pediatric cancer by public invitation.
Activity: Ask families, churches, organizations, etc. to collect Buffalo Berries to help with the fundraising efforts of Bravehearts for Kids.
Children can join the Kids Fun Day celebration by bringing a pint of Buffalo Berries. Childrens games & activities (Bounce Gyms, slides, etc.) will be hosted between the Super Slide and the Zoo at Sertoma Park, Shelter #7. Door prizes will be given out and prizes for competitive games (like Ladder Ball, Bean Bag Toss, etc.)
The Dakota Zoo will be giving $1 discounts to participants in the celebration.
Entertainment: KittyKo (local entertainer specializing in children’s music) will perform between 2:30 PM and 4:00 PM and there will be Karaoke with prizes given to the best entertainment (voted on by the kids) A BBQ with Bratwurst and hot dogs will be available.
How: We have scouted the area for Buffalo Berry Bush stands around Bismarck / Mandan and have maps available. We will have an interview with KXMB 12 at noon on August 24 to promote this event at which we will need two spokespersons for Bravehearts for Kids.
Contact:
www.Braveheartsforkids.org
helpus@braveheartsforkids.org
Ava’s Caringbridge site: http://www.caringbridge.org/visit/avabrae