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Vivian's Hope

$22,050 of $33,000 goal

Raised by 213 people in 13 months
Created October 3, 2017

The news that Vivian, our beloved 11 year old daughter, has DIPG, a terminal brain condition, is absolutely devastating. We were told at diagnosis that she would only make it for another 9 months.

There is no known cause and no cure for DIPG--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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Autumn greetings, friends and family. The holiday season kicks off in our household with Vivian’s late September birthday before swinging into higher gear with Halloween, Thanksgiving and beyond!

Change has been in the air for Vivian this season. Sadly she lost the ability to stand late last month and was assigned to hospice care. Her speech is garbled and sometimes she can’t talk at all. Her right arm and right leg have full feeling but are mostly unresponsive.

We had a terrible scare recently when Vivian couldn’t swallow—she asked to go to the hospital and didn’t want to go home because surely at the hospital they would be able to make her better. She got sent home with an NG tube and a “there’s nothing more we can do.” 

Now my sweet pea knows that the hospital and emergency services can’t offer her anything better than what she’s getting here at home with hospice. A cruel and unacceptable fact, but sadly true.

On the upside we now have a wonderful hospice team who can come to our home at any time, have provided some essential medical supplies and are also giving special at homes services to Vivian such as reiki, massage and music therapy. 

I can’t thank you enough, those who have continued to donate to offset our many unexpected medical costs, you who have sent sweet gifts and greetings to brighten Vivian’s days, and my work colleagues who have offered unbelievable support at every turn.

No one knows what the future holds or how long this latest period of relative stability will last. As you can clearly see in the attached photo from today, Vivian continues to fight bravely, is happy and refuses to let any physical limitations keep her from enjoying life. 

#NEGU (Never Ever Give Up)
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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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$22,050 of $33,000 goal

Raised by 213 people in 13 months
Created October 3, 2017
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CL
$50
Christie Lawrence
10 days ago
$100
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11 days ago
JG
$25
Jeanne Gahagan
11 days ago
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$30
Valerie Norton
12 days ago
$50
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12 days ago
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$20
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