On the Rebound: Cancer Can’t Keep Alex Sidelined

By Levine Children’s, 2018 ISF Sustaining Sponsor

Alex Brogran, Levine Children’s Bone Cancer Patient

Basketball was everything to 11-year-old Alex Bogran – until a sudden leg injury left him sidelined last year. When Alex’s doctors couldn’t find a break or fracture to explain his worsening pain, they called for an MRI.

The results of the MRI were grim: Alex didn’t have an injury – he had osteosarcoma, a type of bone cancer. “It was scary, but I knew everything was going to be okay,” Alex recalls of the diagnosis. “Everything works out in the end.”

For Alex, treatment would be far from easy. It required months of chemotherapy, plus a major surgery to remove the tumor and replace his knee. But his positive attitude never waned, making one thing clear: Treating cancer is tough, but Alex Bogran is tougher.

The full-court press of cancer treatment

Alex’s treatment required top specialists in oncology and orthopedics, and Levine Children’s Hospital was just the place for him to get all the cancer care he needed. “We’ve got some of the best in the country here, so it’s pretty incredible,” says Javier Oesterheld, MD, a pediatric hematologist and oncologist at Levine Children’s.

The first stage of Alex’s treatment was chemotherapy, which is hard for anyone, but it’s especially difficult for kids and their families. 

Knowing that, Alex’s care team put an idea into action: They devised a backpack that lets patients like Alex complete almost all of their chemo treatments at home. “I think that really changed things for him, to be honest. You saw a new Alex,” says Dr. Oesterheld. “You saw a much brighter, happier kid. That’s really the reason why we offer it.”

For the things that still required him to go to the hospital – like his surgery – Alex’s care team did everything they could to make his time at LCH as comfortable as possible. “It was hard, but they really helped me through it. I look at the positive thanks to them,” Alex says. 

A slam dunk for a more normal life

Since his knee replacement surgery, Alex has hit a lot of milestones. But there’s one milestone that surpasses them all: In February of 2018, Alex celebrated his last round of chemotherapy. 

These days, Alex is in physical therapy, where he’s learning to walk again. And one day, he’ll re-learn to jump, so he can get back on the court doing what he loves most.

Alex will continue to see his Levine Children’s care team frequently, to make sure the cancer isn’t coming back, but he’s well on the rebound. And through it all, Alex’s positive attitude has persevered, as has his never-failing belief that everything always works out in the end. 

Levine Children’s Hospital is part of Levine Children’s, a network of care for kids that includes hospital programs, as well as neighborhood pediatric offices and urgent cares. Year after year, LCH is named one of the nation’s top children’s hospitals by U.S. News & World Report for their life-changing care in more than 30 specialties.

ISF Fundraising Events, Supporters & Contributions

Isabella’s parents established The Isabella Santos Foundation in 2009 after she lost her battle to Neuroblastoma to honor their daughter and to carry on her mission of finding a cure for her disease. In 2010 they received a 501(c)(3) status. Although Isabella is no longer with us, the Isabella Santos Foundation continues to hope another child can be saved and will continue to raise money and awareness for the awful disease responsible for stealing her life. Over the years ISF has donated over $1,500,000 for Neuroblastoma research and other children’s cancer charities. Help support our mission and donate today.

Handbags, Heels, & Horsepower
– This November

We are partnering with the Charlotte Auto Show to create a phenomenal event for you & your friends to enjoy! Join us in raising funds for rare pediatric cancer on November 15, 2018. There will be 30+ high-end shoes and purses up for grabs. Attendees have the opportunity to purchase raffle tickets to compete for their favorite items while enjoying the 300+ vehicles on the showroom floor of the Charlotte Auto show.

Each manufacturers space will carry a different high-end handbag or heels for everyone to win. Erin Santos will be presenting at a seated breakfast to wrap up the morning in support of the Isabella Santos Foundation.

Pumpkin Charity Ball
– Every October

ISF hosts the Pumpkin Charity Ball gala, a black-and-white themed formal event, every year to support Atrium Health’s Levine Children’s Hospital. ISF is establishing innovative healthcare programs at Levine Children’s Hospital to treat pediatric oncology patients, and the Pumpkin Charity ball gala raises funds to support these programs for rare pediatric cancer and help solidify Levine Children’s Hospital as a leading healthcare provider in the United States. We hope you will join us for a night of hope, dinner and dancing!

Annual 5K 10K & 1 Mile Fun Run
– Every September

Every September, families come together in Charlotte NC to raise money for pediatric cancer research and local children’s charities. Our 5K for Kids Cancer, 10K and 1 Mile Fun Run is the fastest growing family-friendly race in Charlotte providing fun for the entire family, averaging over 3,000 attendees.

With food and refreshments to help keep you energized, Kids Zone for the little ones including games, face-painting, slides, jump houses, art activities and our raffle/silent auction for the big ones which includes beauty/spa packages, vacations, golf outings, sports memorabilia, jewelry and more.

Golf for a Cure
– June Event

We hosted our first annual “Golf For A Cure” event this past June which was presented by Modern Nissan Lake Norman and hosted at Top Golf in Charlotte, NC. This event is perfect for a girls/guys night out, a double date, or a neighborhood get together.

Food, cocktails, and a silent auction were provided. Top Golf’s tournament style was more social and exciting than traditional on-course golf tournaments and provided day into evening play with no rain-outs or weather delays resulting in a compact timeline and fun for all skill levels. Stay posted for next year’s event! We want you to experience this great event and tee up for an important cause!

Levine Children’s Hospital – 5 Year 5 Million Commitment
– Announced April 10th, 2018

ISF committed $5 million dollars to create a Rare & Solid Tumor Program at Levine Children’s Hospital. This program will oversee care for all solid tumors, rare tumors, metaiodobenzylguanidine (MIBG) therapy, and all related clinical and scientific research at Levine Children’s Hospital.

The donation to Levine Children’s hospital has been one of the single largest in the hospital’s 10-year history, and will fund the creation of a comprehensive team of providers and researchers uniquely positioned to advance care and research for rare and solid tumors.

The team will be constructed over a period of five years, with the initial focus on hiring a medical director, who will be the Isabella Santos Foundation Endowed Chair in Rare & Solid Tumors. This program will serve nearly one-third of the 135 new cancer patients Levine Children’s Hospital sees each year and will allow the hospital to expand their clinical trials.

1st Annual Cocktails for a Cure
– March Event

Our first annual Cocktails For A Cure this past March was a huge success. This event was hosted by our Lake Norman ISF chapter and raised over $30,000! It was a fun night with cocktails, food, and entertainment by Joshua Moyer. Diamonds Direct also helped put the final touches on this night of hope.

We look forward to the upcoming event in 2019! If you are interested in becoming a sponsor for our 2019 event in the Lake Norman area, please contact info@isabellasantosfoundation.org.

Jersey Mike’s Subs Support
– Every March

For the past 8 years, The Isabella Santos Foundation has joined forces with local Jersey Mike’s Subs restaurants throughout the greater Charlotte area for the Annual March “Month of Giving” campaign to raise funds for pediatric cancer research.

In 2018, 37 Jersey Mike’s restaurants participated in a “Day of Giving” and donated 100% of the day’s sales – not just profit – to the Isabella Santos Foundation and raised $141,000!

ISF MIBG Suites Being Built At Levine Children’s Hospital
– Started March 2018, Set to Complete in December 2018

The Isabella Santos Foundation two-room MIBG Suite is currently under construction at the Levine Children’s Hospital and is set to be done December 2018, with the first patient availability in January 2019. When Isabella was battling Neuroblastoma, her parents were forced to travel to the Children’s Hospital of Philadelphia due to this treatment not being available in Charlotte. We are excited that we are changing this challenge for other families.

This two-room MIBG suite will include a lead-lined patient room and an anteroom for parents and caregivers, which will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects. Most MIBG treatment rooms are just a one-room area for the patient receiving treatment, while their parent or caregiver sits on the other side of a lead-lined shield.

Our two-room suite will give the child receiving treatment the ability to see the parent or caregiver through the connecting room window. In addition, the availability of this room will allow for research studies aimed at testing the effectiveness of early MIBG treatment regimens.

A Lasting Presence

David Lieberman, ISF MIBG Ambassador

Isabella’s presence is POWERFUL.  In David Lieberman’s case, his nieces went to Calvary with Isabella.  David’s sister-in-law shared Isabella’s story with him, and he has been involved with ISF ever since.  

First it started off that his family participated in the annual ISF 5K every year.  “It felt tremendously good to be a part of something bigger than me.”  As David’s passion grew stronger and stronger, he continued to give back to ISF on a much larger level.  Giving back to ISF is “an opportunity to play a small role in the lives of people that are dealing with pediatric cancer.”

Even though David’s family has not been affected by cancer, he has known people who have battled it during their lifetime.  “It is highly probable that cancer will take someone that I love so I am choosing to be proactive in the fight to find a cure.”

David became an ISF MIBG Ambassador, with a goal to raise $5,000 for ISF.  You can help David reach his goal by participating in his raffle.  For $20, you receive 2 raffle tickets where you have a chance to win great prizes and gift cards.  Winners are announced on November 3rd.  For more details, visit www.JoinDavidFightCancer.com.  

That’s ACTION, David, thank you for representing ISF as a MIBG Ambassador.  Isabella thanks you!

MIBG Ambassador

Levine Children’s Hospital will now be 1 of 20 hospitals (and the first in the region) to have a MIBG Treatment room in the U.S.  The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects.  As the new MIBG treatment suite continues to progress under construction, we want to ensure that we are preparing for the kids and families who will be entering this program.  New in 2018, we have developed a fundraising program focused on MIBG Therapy – the MIBG Ambassador.  Our goal for 2018 is to have 20 members collectively raising $100,000 for this initiative.  If you are interested in becoming an MIBG Ambassador, please email info@isabellasantosfoundation.org.  

Awareness… What a Bullsh*t Word

Originally published on HuffPost, written by Erin Santos

(Written and published 5 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 percent of 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.

_____________

TURN YOUR AWARENESS INTO ACTION:

  1. DONATE
  2. VOLUNTEER
  3. REGISTER FOR 11 TH ANNUAL 5K/10K RACE (SEPT 29)

MIBG Ambassador: Melissa Scanlon

Gemma & Melissa Scanlon

Last year, a little girl named Gemma Scanlon was diagnosed with Wilms tumor (a pediatric kidney cancer) on her 3rd birthday.  Instead of blowing out candles, the Scanlon’s family was faced with their daughter having cancer.  

Gemma received amazing care at Levine Children’s Hospital.  Dr. Pope and her team took care of their family with compassion and made a very difficult time so much easier.  The Scanlon’s were very grateful that their daughter’s cancer responded well to treatment, and just over one year they are seeing clear CT scans.

“I know the reason we have a great treatment protocol is because someone else raised money, did clinical trials and built facilities because the funding is sadly very limited.  It’s our turn to help the families that don’t have good options yet.  The ISF MIBG Ambassador program is designed to do just that.” 

Melissa is one of our MIBG Ambassadors through the Isabella Santos Foundation, fundraising to help make a difference. She is committed to help raise $5,000, knowing that it will help other families who are battling pediatric cancers right here in Charlotte.

“You can literally see the MIBG room being built uptown.  Kids in the Carolinas battling cancer will have better options for treatment here at home and that is awesome.”

MIBG Ambassador

Levine Children’s Hospital will now be 1 of 20 hospitals (and the first in the region) to have a MIBG Treatment room in the U.S.  The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects.  As the new MIBG treatment suite continues to progress under construction, we want to ensure that we are preparing for the kids and families who will be entering this program.  New in 2018, we have developed a fundraising program focused on MIBG Therapy – the MIBG Ambassador.  Our goal for 2018 is to have 20 members collectively raising $100,000 for this initiative.  If you are interested in becoming an MIBG Ambassador, please email info@isabellasantosfoundation.org.  

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