Tag Archive for: pediatric cancer

Charlotte Community Comes Together to Bring $141,141 IMPACT for Pediatric Cancer

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WHAT LEGACY WILL YOU LEAVE?  WHAT IMPACT WILL YOU MAKE? HOW WILL YOU INSPIRE CHANGE?

Event Photos courtesy of Stikeleather Photography

Our 3rd Annual Coffee for a Cure Events last month were all about creating hope.  Hope for more pediatric cancer options.  Hope for new research.  Hope for families and children fighting this ugly disease.  Over two mornings, we talked about IMPACT, INSPIRATION and LEGACY and how we all can do our part to make things happen.  We are very excited to announce that we raised $141,141 over the course of the two mornings with donations still coming in!

The second week of April was a BIG week for the foundation!  Coffee for a Cure came directly on the heels of announcing our $5 million commitment to Levine Children’s Hospital to establish The Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s Hospital.  This program will impact more than just Charlotte as it will be the first of its kind in the United States.  With this $5 million 5-year initiative, we hope to change lives.  We will be the foundation of something special and will have the best pediatric cancer program, right here is Charlotte.  It will take years of fundraising and years of building… but we hope you will join us in this important mission.

Ten years have passed, and we have seen lots of changes in the Isabella Santos Foundation and we are excited for what the future will bring.  The momentum is strong, the focus is broadening, and the mission to help is growing.  Three extremely proud accomplishments include:  1). Over $1 Million raised in 2017  2).  MIBG Suite is in process and to be unveiled Dec 2018 3). Isabella Santos Foundation has DONATED over $2.5 Million to date.  And we could never have made those accomplishments without every single donor, supporter, volunteer or team member.

We also couldn’t have accomplished such milestones without community leaders advocating for pediatric cancer and our foundation.  We are very proud to have some of the best community leaders on our side.  Joining us for another year as our event emcee, Molly Grantham of WBTV has been with us since the beginning and continues to support our foundation’s mission at every turn (and lately there has been a lot of them).  We thank Molly for her constant support and the IMPACT she is making and INSPIRATION she is creating through her #MollysKids work.

During our annual Coffee for a Cure events we look forward to recognizing individuals in our community with the 6th Annual Isabella Santos Award.  Congratulations to Tim McBride, Tom Patania, and Christie Keagy.  Each one of these individuals has made a difference to those around them and continue to do so. They are out to make an impact and inspire change. And we love that they impact and inspire in their own way.  We thank them for the kind individuals they are, the admirable characteristics they embody and all that they have done for the fight against childhood cancer.

To everyone who supports us…we cannot begin to put into words to how grateful that we are for the impact you are helping us make. We are so proud of what we have accomplished together and it is because of YOU.  We hope you will continue to join us.  We are fortunate to live a community that stands behind us.  Thank you to the following businesses who support our mission of fighting childhood cancer and helped us make the 2018 Coffee for a Cure Events possible. 

Event Photos courtesy of Stikeleather Photography

SUSTAINING SPONSORS

EVENT SPONSORS

Jersey Mike’s raises $135,000 for local pediatric cancer foundation during nationwide Month of Giving

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37 Greater Charlotte area restaurants.  300+ smiling employees. 7,271 loaves of bread.  Countless paper sub bags.  Hundreds of community partners and long lines of volunteers, supporters and friends.  $135,000 RAISED.  Thank you for eating subs with us in March.  Thank you Jersey Mike’s Subs for your give back and make a difference attitude. It is these actions that create IMPACT.

Jersey Mike’s Subs joined forces with its generous customers throughout the Greater Charlotte area in March, to support the Isabella Santos Foundation (ISF) during the 8th Annual “Month of Giving” campaign.  The campaign raised an incredible $135,000 for ISF which will help fight rare pediatric cancer in the Charlotte region and beyond.  ISF recently committed $5 Million to establish The Isabella Santos Foundation Rare and Solid Tumor Program at Levine Children’s Hospital (LCH).  This program will oversee care for all solid tumors, rare tumors, MIBG therapy, and all related clinical and scientific research at LCH and it will be the first of its kind in the United States.

The month of fundraising culminated on March 28th with Jersey Mike’s nationwide “Day of Giving” where 100% of the sales, not just the profits, were donated to the local charities.

More than $6 million was raised by Jersey Mike’s around the country, impacting more than 170 organizations. Thank you for eating at Jersey Mike’s in March with us.  The funds raised for the Isabella Santos Foundation stay right here in the Charlotte community.  During times like these, we feel extremely humbled. Isabella has moved us and many others to take action for kids fighting cancer. Good things are happening because of Isabella’s legacy.  Thank you Queen City!

“Jersey Mike’s is very honored to be a partner with such a great organization like ISF who is making a huge impact on the fight against pediatric cancers.  It is truly amazing how many families the foundation touches and what a huge difference they are making in their lives.  We are so proud to be a small piece of all this and look forward to a long lasting relationship with ISF.” – Nick Smith, Jersey Mike’s Charlotte Franchise Owner

Charlotte Day of Giving Photos

Outside Looking In

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I haven’t been able to shake the news of TJ Anderson’s passing today. I can never fathom being in TJ or Isabella’s parents’ shoes, heads or hearts and losing a child to cancer. With Isabella, I simply watched from the outside looking in. It changed me forever.

I will never forget watching Isabella’s little body struggle for life with every breath she took during 3F8 antibody treatment at Memorial Sloan Kettering Cancer Center. I will never forget the 2 ER visits in one night due to adverse reactions to treatments that day. I will never forget taking a shift at night in the hospital so that Isabella’s parents could get some rest… and Isabella was up all night puking blood in a bucket while her life was hooked to machines. I will never forget the next morning as she lifted her head off the pillow and her dyed red hair was falling out AGAIN due to the kitchen sink chemo procedure. I will never forget sitting with her during chemo treatments at Levine Children’s Hospital and watching a teenager receiving treatment right across from us… when both Isabella and this teenager should be with friends or at school. I will never forget getting called in the middle of the night to come sit with Isabella’s siblings while her parents rushed her to the hospital. I will never forget Erin’s shaking hands as she begged and pleaded with the doctors to operate after they said there was no more options. I will never forget the doctors lecture on how it was time to think about Isabella’s quality of life. I will never forget kissing Isabella goodbye while she laid un-alert in her parents bed and how ashen she looked.

I will never un-see these moments. I saw too much to not take action and continue fighting. I watched from the outside looking in. It changed me forever.

We talk a lot about taking action… awareness is simply not enough. What are you doing to turn your awareness into ACTION?

– Rachel, ISF Marketing Director

TAKE ACTION:
Donate
Volunteer
Sponsor: dre@isabellasantosfoundation.org

I HOPE…

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There are so many things we HOPE for.  This poem (author unknown) sums up all our HOPES and the reasons we continue to fight pediatric cancer.  We posted this poem earlier in the year and not only did it become our most popular post of 2017, but of all time.  As we wrap up our 10th year of the foundation, we thank you for fighting with us, for supporting us, for crying with us, for believing in us…. and most of all for helping us continue to keep Isabella’s legacy alive as we fight childhood cancer.  It started with a girl… and she is changing the world!

We hope you and your family have a wonderful (and safe) New Years Eve and look forward to conquering our HOPES together in 2018.

Isabella after brain surgery

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chem

otherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

(author unknown)

Ports, bald head and scars…

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“This picture that was taken of Isabella always makes me smile. We had just moved back to Charlotte from New York City in the fall after a brain relapse that sent us into a tailspin. The mass on her brain forced emergency surgery, followed by a chemo and radiation regiment that meant moving our whole family for 4 months to the city. If you look closely, you will see the port that was placed just under her skin on top of her head. This port was connected to veins in her central nervous system so a drug called 8H9 could bathe her entire brain and spinal cord with a life saving treatment. (This 8H9 drug developed by Dr. Kim Kramer at Memorial Sloan Kettering Cancer Center has since received national recognition as one of leading new drugs for relapsed neuroblastoma.) In this picture Isabella has yet to receive her first dose of 8H9, but the relapse that once frightened us to our core had 4 months of treatment under its belt and was doing amazingly well. This port would be used in just a couple of months while Isabella was in remission to kill any microscopic cells that may still remain. I was there for a test treatment and was blown away as she calmly sat in her hospital bed while Dr. Kramer inserted a needle into the port and sent fluid through her CNS to ensure the port was working correctly. She looked at me with wide eyes as I sat next to her holding her hand. After 15 minutes of treatment, the needle was removed and she went about playing per usual as if nothing had happened. She would receive 3 of these treatments in the next couple of months but we decided as a family to remove me from the treatment due to possible radiation exposure. My Mom of course stepped in exposed herself, selfless as always. We wanted to have another baby and felt like it was safer for me to be away. I got pregnant that January.
 
That little port never bothered her as you can tell from this smile. As a parent your eye always caught it, but you knew it was imperative to her survival. The port stayed with her the rest of her life. I always wished they had taken it out, but like her bald head and scars… it just became part of who she was. We took her lead and just became happy to have every day with her – who cared about that port? She sure didn’t.” -Isabella’s Mommy
 
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