Tag Archive for: charlotte childhood cancer

Lake Norman Coffee for a Cure Brings in Over $35,000 for Pediatric Cancer Research

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2017 Lake Norman Coffee for a Cure. Photo courtesy of Localscroll.com

Our 2nd annual Coffee for a Cure hosted by our ISF Lake Norman chapter was a huge success.  Thank you to the 250 men and women who attended and the sponsors and local businesses who gave time and money to this event.  This event served as a call to action in the fight against pediatric cancer and to educate community members on the importance of bringing pediatric cancer treatments home to Charlotte.  We were able to raise $35,000 and donations have continued to come in.  These funds bring us one step closer to our 2017 $1,000,000 fundraising goal to fund the creation of a MIBG room at Levine Children’s Hospital.

Our Lake Norman chapter could not put on such a wonderful event if it wasn’t for the support of our community businesses who help us through their sponsorship. It is through their passion for charitable giving and making a local impact that we are able to continue Isabella’s fight. Thank you to the following businesses:

2017 Lake Norman Coffee for a Cure. Photos courtesy of Localscroll.com

During the event, we introduced our new major gift society, called The Three Wish Circle, with an annual gift of $5000 or more, donors can take their support of the ISF mission to the next level by funding more research for childhood cancer and help to bring innovative treatment options to our local community.  If you have questions or want to know more about how to take your support to the next level, contact our ISF Development Director, Tia Wackerhagen.

We cannot begin to put words to how grateful that we are for the impact you are helping us make, thank you for your support.. We are so proud of what we have accomplished together and it is because of YOU. We could not do this alone and could not continue our fight without your help. We humbly thank each of you and look forward to a world with no more cancer where we will beat cancer, grow hair and live the dreams of all children fighting the fight.

We appreciate Local Scroll Charlotte for capturing the event, view all photos of the 2017 Lake Norman Coffee for a Cure.

He wasn’t there in the beginning or the end…

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Written by Erin Santos, Isabella’s Mommy

It’s been a long 5 years but relationships are growing and changing at Levine Children’s Hospital.  I’ve gone from admiration and love, to fear and anxiety and then back again with these doctors.  The walls and people that once crippled me upon entering after Isabella’s death have become a second home to me.  I know I can joke a lot about how a large donation commitment can buy you a hospital friendship, but it’s become much more than that.  I feel like I have become so much stronger around them.  Just a few years ago, I could barely stand without my knees buckling when I knew Dr. Kaplan was going to be at an ISF event.  Then, this past July – I find myself in the oncology clinic helping give gifts to the kids for our Christmas in July event.  I feel  him coming down the hall before I even see him, just like it used to be –  and my heart still stops for a minute.  We exchange pleasantries and hugs – like you do with an old boyfriend who you run into at a Starbucks years later.  It’s uncomfortable because there was history… but it’s becoming more comfortable because there IS history.  Not sure if I can ever feel totally comfortable around him – but I’m trying really hard.

Luckily, my new contact at Levine isn’t my old boyfriend Dr. Kaplan  🙂  As I sat in the “Green Room” of the NBC Charlotte news studio this week for over an hour with Dr. Javier Osterheld (one of Isabella’s past oncologists), I found myself comfortable and enjoying the company. We were together to talk on air about the MIBG treatment room ISF is funding at Levine’s.  We talked about all things cancer, the hospital, family, beer and other things that might be tad inappropriate.  I found myself laughing and enjoying the company of a man who I wasn’t the biggest fan of several years ago.  Cancer can make you love and hate people all in the same week.  He is easier for me because we don’t have the 5 year history that I had with Kaplan.  He wasn’t there in the beginning or the end.

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We talked about his training with Isabella’s Dream Team and I asked him how many half-marathons he had done in the past.  His answer… “This is my first.  And I’m doing it for you and Isabella.”  Maybe he was bullied into doing it at first, but maybe he’s just really an amazing guy and we lose that vision of these doctors when they give us horrible news about our children.  It brought me back to my ‘Why I loved Him’ blog post  about how you go through these feelings of total admiration for these people because your child’s life is in their hands.  You put this God-like complex on them and they don’t ask for that.  In the end, they really are just normal people who like you have jobs they love and are just trying to save the life of kids.  But they are also people who drink beer, and make fun of themselves and laugh and cuss… just like you.
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I find that through Isabella’s death, new things come to life, like friendships with people you once hated that were really only trying to save her.  I can see them all more clearly now – and they are all amazing people.

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TURN YOUR AWARENESS INTO ACTION:

  1. DONATE
  2. VOLUNTEER
  3. REGISTER FOR 10 TH ANNUAL 5K/10K RACE (SEPT 30)
  4. SPONSOR 10TH ANNULA 5K/10K RACE (SEPT 30)

Awareness… What a Bullsh*t Word

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Originally published on HuffPost, written by Erin Santos

(Written and published 4 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percentof the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

2013-09-04-Isabella_Santos.jpgSo, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

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TURN YOUR AWARENESS INTO ACTION:

  1. DONATE
  2. VOLUNTEER
  3. REGISTER FOR 10 TH ANNUAL 5K/10K RACE (SEPT 30)
  4. SPONSOR 10TH ANNULA 5K/10K RACE (SEPT 30)

 

2017 Sustaining Sponsor: PSL Source/Maxim Tickets

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As we move into crunch time for our 10th Annual 5K/10K and Fun Run for Kids Cancer, we want to make sure we take the time to thank our sponsors who help make this event possible.  We have had several companies decide to partner with us for the entire year as a Sustaining Sponsor.  A Sustaining Sponsor is an annual sponsor of the Isabella Santos Foundation. Support from sponsors are what enable our continued level of success.

PSL Source/Maxim Tickets has supported ISF for years.  They consistently donate event/game tickets to the Isabella Santos Foundation for our auction and giveaways.  This year they stepped up as a 2017 sustaining sponsor in an effort to support us in fighting childhood cancer.

Check them out for sports and concert needs and buy and sell Carolina Panthers PSLs securely and hassle-free at PSLsource.com.

PSL SOURCE:  Buy and sell Carolina Panthers PSLs (Personal Seat License) and become a season ticket holder for the upcoming 2017 season, and every year after at Bank of America Stadium.

Benefits for buyers:

  • No buyer’s fees or “finder’s fees”
  • Unmatched selection – most BELOW MARKET
  • Expert staff & market analysis
  • Payments are secured and guaranteed

Benefits for sellers:

  • FREE to create an account
  • FREE to create your listing
  • YOU control the negotiation
  • LOW commission, only if your seat sells

Maxim Tickets – Looking to purchase single game tickets or season tickets for the Carolina Panthers? Visit maximtickets.com.  We offer a huge selection of Carolina Panthers tickets including Panther season ticket packages and Panther parking for the season.

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Maxim Tickets/PSL Source

Maxim Tickets has operated from Charlotte, NC for over a decade. As one of the industry’s premium independent broker of high-demand tickets, Maxim Tickets is known for a superior selection, great prices, and service. Memberships include the National Association of Ticket Brokers (NATB), the Better Business Bureau (BBB), and the Charlotte Chamber of Commerce (CCC).

Our Little Cheerleader

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One of Isabella’s favorite days of her life.
 
We LOVE the Carolina Panthers and excited to see them play in the first pre-season game tonight. Make-A-Wish Central & Western North Carolina and The Carolina Panthers Top Cats made her an honorary Top Cat for the day in November of 2011. She was low on energy but she muscled up the strength for the day. The crowd was so amazing to her and everyone on the Panthers organization laid out the red carpet for the Santos family. Her picture still hangs in the Top Cat locker room to this day.
As a previous Wish Family, we understand the importance of a child’s wish and how a wish experience can be a game-changer for a child with cancer.  The Make-A-Wish Foundation grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.  Over the past 10 years, ISF has donated over $143,000 to Make-A-Wish, granting over 24 wishes in the state of North Carolina.
Donate today to take action for pediatric cancer in Isabella’s honor.