Vivian's Hope

$21,110 of $33,000 goal

Raised by 196 people in 10 months
Created October 3, 2017
The news that Vivian, our beloved 10 year old daughter, has DIPG, a terminal brain condition, is absolutely devastating. There is no known cause and no cure--making this something that could happen to any innocent child.

We are determined to do everything possible to help find a cure while ensuring that our darling maintains a high quality of life.

With the utmost grace and grit, Vivian has begun her fight to overcome this nighmare. We have resolved to enjoy each moment with her, from her unique sense of humor and gusto for sticker projects to the love that shines through her beautiful brown eyes every night when we sing our sunshine to sleep.

Beyond the conventional palliative options are some promising rays of hope, but all are quite costly ($30,000+ per treatment is standard, with no insurance coverage due to the experimental status) so we must start planning and saving up now to give Vivi the best possible chance.

Since every day with Vivi is a gift, we want to make all her dreams come true. Gwendolyn Gomez will act as the beneficiary on behalf of our daughter.

From playtime with koalas, pool parties and RV camping trips, your compassionate support to this campaign will allow us to make this time extra special + support us in our quest to beat the odds.
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After 7 months of “stability” we received the unfortunate news this week that Vivian’s illness is no longer so. Hearing those words and seeing the MRI were devastating moments rivaled only by the horrific diagnosis initially received back in September.

Among other things, this means that we no longer qualify to continue her clinical trial and must quickly devise new treatment options since the current ones have partially or wholly failed to stave off the ruthless killer that is DIPG.

However, Vivian is still acting, feeling and appearing the same as before, which fills me with boundless gratitude. Since this could change any day now, it’s more crucial than ever that we spend all our time keeping her happy and showering her with love.

Next steps involve experimental treatments with low to no side effects. Unfortunately, some are not covered by insurance so if you’re able to continue to provide any amount of support towards the monthly costs of these medicines it would be greatly appreciated.

Despite this setback we remain committed to Vivian’s recovery, and thank all of you for the kind words, prayers and love that have helped make our outcome positive so far.
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Summer update from Vivian. Today we enjoyed a beautiful afternoon at the park while helming Vivian’s Lemonade stand.

Vivian had wished for a lemonade stand for quite a while now so her dad built this great little unit on wheels. With her big brother’s help, we pushed it up the street to our local park and had a great time meeting new neighbors and serving up some homemade, fresh squeezed lemonade.

Vivian has decided to donate all proceeds to an organization dedicated to improving quality of life for children with brain cancer.

Our family continues to be overwhelmed with gratitude that her illness remains stable and that she is able to have days like today where she feels well enough to get outside.

Six weeks of radiation, six months of chemotherapy, thousands of pills, countless needle pokes...our sweet daughter fights on!
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Spring greetings! It's been a while since we've posted an update about Vivian. So glad to to share that she's doing very well.

Our 10 year old supergirl has withstood radiation, chemotherapy, targeted therapy and more pills and other supplements than she should ever have to deal with in a lifetime. All with a smile, an iron will and a wonderfully goofy sense of humor.

Attached is a recent photo of her at the beach, enjoying a beautiful afternoon and building a sandcastle, and just being a kid.

Thank you to everyone for your kind support in helping make this possible.
Enjoying the sun and sand @OceanBeach
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Happy holidays everyone! Yesterday we returned from Vivian's Make a Wish trip to Oahu, Hawaii so it seems like a good time to update everyone on how she's doing.

Vivian has responded very well to conventional therapy, which ended early last week. We are overjoyed to see that she is back to her old self personality-wise, and exhibiting far fewer symptoms than she has in many weeks. She still uses her scooter for longer excursions, but now walks independently most of the time. Her adorable smile and contagious laugh are also back, lighting up every day.

Hawaii was the perfect place to journey for some solid days of swimming, snorkling, big wave watching, playing with dolphins, ukelele strumming, and celebration of family.

We are humbled by the kindness, generosity and love that you have all shown towards our family this year. Wishing you all the very best for 2018.
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$21,110 of $33,000 goal

Raised by 196 people in 10 months
Created October 3, 2017
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Norm Heske
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