Tag Archive for: charlotte neuroblastoma non profit

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)

Give Back to Families Away From Home During the Holidays

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Holidays can be difficult for families with a child fighting cancer. While many of us continue with our family traditions, many families will have to spend their holidays away from home. Ronald McDonald Houses across the nation are a place for families to stay, feel comfortable and feel safe. A home away from home.

Here in Charlotte we are grateful to have the Ronald McDonald House of Charlotte and their incredible staff. Locate your local house to inquire about what you can do to give back this holiday season. A couple ideas:

1. Cook dinner for families staying in the house. This is one of our favorite things to do as a group. Cook as a team from work or as a family. You will have so much fun!

2. Ronald McDonald houses have an ongoing Wish List of items they need to help the house run day to day. Toilet paper, deodorant, trash bags, ect. Pick some items from the list, take your child to help you shop, and drop off at your local Ronald McDonald house.

3. Do you have a business with event or sports tickets? While in town, families need to get out of the house. Donate your basketball or play tickets to help keep families keep their mind off the reason they are in town.

Isabella and her family stayed often at the Ronald McDonald House New York while being treated at Memorial Sloan Kettering Cancer Center. Ronald McDonald Houses play a significant and important role for families and we appreciate everything they do for communities.

Fighting a Disease

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Jackson, 2016 Charlotte Half Marathon

Written by Tammy Lowry, Jackson’s Mom
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At the age of 12, my son Jackson Lowry decided to join the Isabella Santos Foundation Dream Team.  The Dream Team trains together as a group to run a half marathon, supporting each other and raising funds for ISF and pediatric cancer.  November 2016 was his first half marathon, and he did a phenomenal job.  He politely reminds me every day that he beat me, and he is going to beat me again this year.  His motivation might be to beat his mother in a half marathon, but the biggest joy I embrace is how he is learning about fundraising and supporting our community when there are kids a little less fortunate.  But then something happens that reminds me – – he knows what that is like.  He knows how it is to fight a disease.  He has Type 1 Diabetes, and it haunts us when we least expect it.
 XXXX
Last Saturday was a critical part of our half marathon training.  We were meeting for a group run that is 10 miles of the actual race course.  Unfortunately, Jackson had a cross country meet that morning with his middle school – so we both did not attend the group run.   Instead, we got up on Sunday and hit the streets at 7:45am to accomplish this run together.  There is a part of the half marathon course that is a huge hill on Providence Road.  Jackson and I both agreed that once we run that, we are golden.
 XXX
We start off with our run, and he is in high spirits.  He is directing me which route to go, which streets to run on.  He was so pumped.  We pull that hill on Providence Road and when we reached the top he started to slow down.  Now he fell behind me in pace.  We were only at 3 miles – – we had a long ways to go.  I kept looking back at him to see what was going on, and I looped back around.  His blood sugar dropped significantly and he was having a diabetic attack.  I pulled out a bag of energy beans because that is all I had on me at the time.  He ate the entire bag and felt better immediately.  But when you deal with blood sugar highs and lows – it affects your attitude, your mood, and your motivation.  He lost all motivation after his attack.
 XXX
As he looked at me completely wiped out, he told me to go ahead and run.  I was hesitant at first.  I ran ahead of him and I would circle back around to see how he was doing.  Then I finally kept on running but talked to him on the phone as I completed my 10 miles.  He walked it behind me, but he kept going.
 XXX
The entire time I thought – – what is he going to say to me when we meet back at my car?  Will he be defeated?  Will he be upset?  How do I handle this as his mom?  I certainly know that you have good runs and bad runs, but will he understand that?  He is only 13 years old.
 XXX
We get back to the car and he looks at me and says, “I will get it next time.”  Yes you will Jackson, yes you will.  This weekend, we have an 8 mile run, and I know he will do it.  His heart is full of motivation and he won’t quit.
– Tammy Lowry, Jackson’s Mom

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)

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).