Tag Archive for: charlotte childhood cancer

Dear JEM Project: Thank You For Being the Team Who Kept Madison’s & ISF’s Mission on Course

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It’s hard to put into words how grateful we are for the impact The JEM Project’s $250,000 donation to ISF is creating for kids fighting rare pediatric cancer and for our community.  Follow along this week as we share ‘Thank You’ letters from many of those who feel the incredible significance of their gift.

Madison’s Mom shares what this donation can do for other families fighting pediatric cancer…

Dear JEM Project, 

“What do you want to be when you grow up?” – the all too common question asked to kids when they are little.  My answer was always “a teacher”, but in my heart I just wanted to be a mom.  When Mickey and I got married we talked about having a big family, and would have been perfectly happy with our own reality show “Fedak’s Fab Fifteen”, but God had other plans.  In 2009, Riley was born.  She was beautiful and healthy, and you couldn’t tell me the world didn’t revolve around her.  We were blessed again when God gave us Madison in 2012, and immediately I knew how lucky I was to be a mom to two of the most beautiful, precious little people.  Our “parenting” story would stop with Riley and Madison, and we were both perfectly happy with that.  Our lives were going great, until they weren’t.

Neither of my babies ever went to the doctor unless it was a regular checkup or the occasional ear infection.  We rarely had fevers, no broken bones, and no extreme injuries.  But on April 5, 2018, Madison’s pain took us to an emergency room that gave us the most devastating news any parent could receive.  I’m pretty sure you know that story by now, but what you don’t know is that in my mind, I kept questioning, “What did I do wrong?”.  My thoughts immediately went back to my pregnancy with her.  Did I stand too close to the microwave?  Did I use my cell phone too much?  Was a computer too close to my belly?  What did I eat?  Did I eat the right things?  Did I eat something wrong?    For two years I have argued with myself that I could have done something to have stopped this before it even began, but I have just recently realized that it isn’t about what I did before she was diagnosed, it’s about what I am going to do now.  Now that I know this disease can steal a child from her momma without warning, I have to be a part of something that will look to the future and figure out a way that no other Madison will ever lose her life to this ugly disease. 

When I talked to Rachel, ISF Marketing Director, in early January, she shared that the ISF team was furious.  They were all so angry and disappointed that the work they were doing was not enough to save Madison.  She shared that they were working on raising funds for research trials in Madison’s honor, and I was thrilled!  My first thought was, “Madison might not be here anymore, but she is still affecting people!”  Madison was a tiny little girl who can still make a difference, and I had to be a part of continuing the fight she began.

Rachel asked if I would be willing to speak at a breakfast/coffee event for ISF, and truthfully I had mixed emotions.  It wasn’t that I was scared to speak in front of so many people, I was honestly scared that my words wouldn’t be powerful enough to raise the money.  I was worried that I would fail the entire team, or worse that I would fail Madison.  I wrestled with the idea because Madison had only been gone for a few weeks, and at the time of the event it will still be so fresh and raw.  But I also knew what better way to make an impact than to share those raw feelings.  Knowing how important that week was for ISF in terms of fundraising, I was devastated COVID-19 had cancelled the event.  Not having this event meant not having the money. 

But then Rachel called me again in early April and shared the unbelievable news that you and your team pledged $250,000.  There hasn’t been a word created yet (and I’ve looked) to adequately describe the overwhelming feelings of gratitude I have right now. Through your more than generous donation, I have realized there is no way I can fail as long as Madison’s story continues to be told.  I’ve shared recently that my biggest fear no longer exists. I feared for two years that osteosarcoma would take Madison from me, and it did.  I can’t hold her or tuck her in at night.  I can’t pick out her clothes or run to her when she calls me in the middle of the night.       

Cancer stole so much from me; it stole from my family.  But because of your donation, there will be less cancer families who will know this statement even exists.  You didn’t even know Madison, but I so wish you did.  She was beautiful, inside and out.  And when I say she loved everyone, I mean EVERYONE.  She welcomed everyone into her room, even when I wanted a break.  She made people happy, and unfortunately she will no longer be able to share that love with the world.  But thankfully, we can.  Because of what you have so selflessly done, the team has the money to begin the search.  They can now start finding an answer.  They can find a cure so that no other mom will never know the pain of losing a child.

Thank you.  Thank you for the donation, but for so much more.  Thank you for allowing me to share Madison with the rest of the world.  Thank you for being a part of something huge.  Thank you for being the team who kept Madison’s and the  ISF’s mission on course.   I can hear her saying, “Look mom, I got some more soldiers for my army!”  

With all my love, 

Laura, Madison’s Mommy

Isabella Santos Foundation Receives $250,000 Gift by The JEM Foundation

Dear JEM Project: Your donation is Giving Children Fighting Cancer Time

Dear JEM Project: Your Donation is Giving Children Fighting Cancer Time

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It’s hard to put into words how grateful we are for the impact The JEM Project’s $250,000 donation to ISF is creating for kids fighting rare pediatric cancer and for our community.  Follow along this week as we share ‘Thank You’ letters from many of those who feel the incredible significance of their gift.

Isabella’s Grandmother shares what donations like this have given to her…

Dear JEM Project, 

Thank you. Those two words cannot begin to express how grateful I am for your generosity to ISF. I am Isabella’s grandma and I, along with Isabella and her family have faced pediatric cancer head on. Somewhere, deep inside, during her journey, I always knew losing her was a possibility. The cancer could win. We all knew it. It was this fear that grew like a fire inside all of us who knew her and formed ISF.  But the money and the research needed were not available at the time to save Isabella and on June 28, 2012 our hearts were forever broken. 

It is well known that donations are made to fund research. To search for a cure. To promote the cause. But let me share with you what donations like yours have given to me. They gave me time. Almost eight years have passed, and I am slowly able to look at the pictures and smile at the memories of Isabella and our time together. The clinical trials, those like you are helping fund, gave me time with her to bake cookies, take walks, laugh, and even argue. The research that people like you help fund gave me real life moments with Isabella like talking to her in the car on the way to school about getting married and boyfriends. The money that you gave to pay for the best oncologists to treat her gave me time to read to her and sing silly songs about broccoli. They gave me time to have her try on a flower girl dress for my wedding. These donations unfortunately, did not save her life but they gave us time. They gave us time to say I love you to her every day. They gave me time to support my daughter, Erin, as she navigated through the most incomprehensible decisions that any parent must make. They gave me time to lie in bed with them and understand the importance of that simple moment. As I write this, I understand that this is a selfish look at the significance of your donation, but I hope you understand that your donation today is giving children precious time. It is giving parents, brothers, sisters, grandparents, aunts, uncles, and friends time. It is giving doctors and nurses time. It is giving research hospitals time. The cure will come. It is on the horizon and it is exciting to hear of the new research and technologies available that were not available for Isabella. But this too will take time. 

I am so grateful for your extremely generous donation to the foundation. ISF is doing incredible things and making a difference in the lives of children and their families. They are refusing to let pediatric cancer hide in the shadows. They are shining a bright light on the future and I am so glad to welcome you into this light. They are not going to give up and it is because of your generous heart that they are able to continue their mission. I hope I can meet you someday to thank you in person. 

From the bottom of my heart……Thank you!

Connie Stewart, Isabella’s Grandma

Isabella Santos Foundation Receives $250,000 Gift by The JEM Foundation

Isabella Santos Foundation Receives $250,000 Gift by The JEM Foundation

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We are extremely overwhelmed with gratitude to announce a $250,000 gift graciously donated to ISF by The JEM Project.  This organization was set to be our presenting sponsor for our 2-day coffee events and stepped up to make an even larger impact during a time of crucial lost revenue for us.

During this time, concerned for our future and our ability to impact kids fighting cancer, we want to remind everyone how essential nonprofits like us are.  Pediatric cancer doesn’t stop, no matter what is going on in the world, and neither will we.  

Thank you JEM Project.  It’s hard to put into words how grateful we are for the impact you are creating for kids fighting rare pediatric cancer and for our community.  Not to mention the difference you have made on each of us at the foundation. You have given us the ability to put one foot in front of the other, during this difficult time and continue our mission.  We are so humbled and appreciative of your organization. Follow along this week as we share ‘Thank You’ letters from many of those who feel the incredible significance of this gift.

Isabella’s Mom, Erin, shares first how powerful this impact is for her personally…

I hit it off with Leah in about 10 minutes over lunch.  We connected on all things family, life and cancer. Listening to her tell her family’s cancer story just proved to me, as it does time and time again, we all have a story to tell.  It isn’t until you lose someone from cancer, that you really understand the importance of funding. We always appreciated all the family services that were provided to us when our daughter was going through cancer.  Gas cards, dinners, gifts for our kids – all necessary parts of the process. But when your daughter dies – it became crystal clear to me why she died. There weren’t enough people out there overflowing research buckets with money.   Then you meet more and more kids, and their stories remind you of your own – you become close to these families and you see the look in their eye. They are scared, just as you were – but they look at you and the look in their eyes says… “please hurry”.  Our Foundation lost one of our closest patients (Madison) in December of 2019. It rattled us all to our core and it was the first time I thought about quitting my job. It wasn’t happening fast enough and I felt the blame for this little girl not surviving.  My own daughter would tell me over and over again how proud she was of me because the job I was doing was saving little girls like Madison. And then we didn’t save her. I wondered what we were even doing anymore if we couldn’t save this one I REALLY needed to save.  I have to say, I checked out. I had to do some true soul searching.  

Fast forward to mid January.  Our team was pissed. We were hurt.  We decided that we needed to make big changes.  Like my daughter, I felt like Madison was taken to change people.  I couldn’t ignore how similar this situation felt. The feeling of wanting to just walk away – not allowing yourself to change because you don’t want to feel this pain every day.  But instead, I allowed Madison to change me. 7 years after my daughter passed away – a little girl was brought into my life and then taken from us – a reminder of why this whole thing started 13 years ago.  We started planning.  

Our 2 day coffee event was looming and I have never seen my team so excited.  We felt like we had a purpose. Madison’s mother had agreed to speak and I knew it would be one of the most difficult things she would ever do.   As a team we set a goal. $250,000 over two days. Not only were we going to continue our mission to bring the top doctor in the nation who specializes in rare cancers to Charlotte, but we were also adding in trials in honor of Madison to help change outcomes for kids with Osteosarcoma.  We were ready. Our two day event was filling up, our sponsor list was bigger than ever and our program was set.

And then it hit.  As each day passed we felt our event slipping through our fingers.  At first it felt like a train coming right at us that we were trying to derail, but no matter what we did – it just kept speeding up.  I knew we had to make the call. The word had just come out that gatherings of over 50 people were prohibited. My stomach just dropped.  It was the first week in March and our event was a little over 2 weeks away. I was out of town and found myself taking long walks – wondering how to shake this feeling that we were letting Madison down…again.  How could this be?

Then Leah from The JEM Project called.  

I feel like the call was a blur.  I just remember sitting in my room once the call ended and crying.  In 13 years of the Foundation I have never received a call like this.  You would think receiving money for rare pediatric cancer would be easy, but it’s not.  People don’t really understand unless they have lived it. But for the first time, someone got it.  They didn’t have to bury their own child to get it either. The money we received from the JEM project saved us all.  Not only did it allow us to continue with our mission but in a way I feel like it saved me the most. My daily struggle of wondering if I am ready to move on.  Am I still making a difference? Can I look at these families and tell them that we are in fact hurrying because their kids are just as important to me as mine was?  This money did all that for me. It kept my team alive, it kept these families alive – it kept Isabella’s dream alive.  

Dear JEM Project…

Jessica, I have never had the pleasure of meeting you – but I hope one day I will.  I want you to know how meaningful this donation was to so many people. You have such an unbelievable opportunity to change peoples lives forever.  The lives of kids, their parents and families and all of us who are trying to save them. The work you do blows me away when I see all the organization you are assisting.  You are a lifesaver and no thank you I can ever say will truly convey how I feel. It has left me speechless – which rarely happens.

Leah, words can’t describe what meeting you has done to me.  Thank you for “getting it” and believing in me. I promise to never let you down.  You have been a person who has come into my life and changed things forever.  

The state of our country scares me.  I fear that people will forget that cancer never stops, even during all this.  If we forget about organizations like ISF right now, who will be there for these kids when they need it the most?  I pray our community will rally around us and remember that we are ESSENTIAL. We can’t stop. Lives depend on it.

My hope is this is just the beginning of our relationship with the JEM project.  I am excited to keep you both informed of what we are doing and how your money is working because there is so much more we want to do.  Stay tuned. We are just getting started.

All my love and forever thanks,

Erin (Isabella’s Mommy)

MORE THANK YOU LETTERS:

Dear JEM Project: Your Donation is Giving Children Fighting Cancer Time (Isabella’s Grandma)

Dear JEM Project: Thank You for Being the Team Who Kept Madison’s & ISF’s Mission on Course (Madison’s Mom)

Dear JEM Project: Thank You for Your Contribution To Our Goal of Finding a Cure (Madison’s Dad)

Dear JEM Project: Thank You for Donating in My Sister’s Name (Madison’s Sister)

Levine Children’s Certified as a COG MIBG Treatment Center Hospital

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A little update..well, actually really big news for all our supporters who helped us make the MIBG Therapy suite a reality here in Charlotte.

In 2017 so many of you helped us raise $1,000,000 to fund the Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s.  In 2018 that therapy suite was constructed and Levine Children’s treated it’s first MIBG patient by the end of the year. Since then there has been a rotation of children fighting neuroblastoma, treated in the specialized therapy room.  

Just this week Levine Children’s met another exciting milestone… they have been approved as an official treating facility for MIBG therapy through the Children’s Oncology Group (COG).  This was a long time in the making and we are so proud of the LCH staff for all they have accomplished to help make this a reality.

Simply put, this advanced treatment is now more accessible to kids fighting neuroblastoma.

So what does this mean?  

  • 90% of children diagnosed with cancer in the United States are treated by a COG hospital. There are over 200 certified COG Hospitals across the U.S. and  Levine Children’s is one of them
  • Being part of this network means that every child and care team have complete access to the latest research and world-class treatments at hospitals near them.  
  • Levine Children’s has been working through the necessary steps for COG MIBG approval for the past 18 months
  • Levine Children’s is now a certified COG MIBG treating center hospital
  • Levine Children’s is now approved to administer MIBG Therapy to kids fighting neuroblastoma who are entered on the MIBG protocol through the U.S.
  • Levine Children’s is currently the 18th hospital (1 of 3 on the east coast) approved to administer MIBG Therapy in the U.S.
  • Neuroblastoma patients in Charlotte who are put on MIBG will NOT have to travel 
  • Neuroblastoma patients from all over U.S. can now be treated at Levine Children’s for MIBG

MIBG therapy provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. We are thrilled this therapy will now impact kids fighting neuroblastoma beyond the Charlotte region and equally thrilled that this helps Levine Children’s continue their impact on a larger scale.  Thank you to all of you who continue to believe in our mission. We are extremely grateful for your support.

Learn more about MIBG Therapy

Sweet’s Elderberry Donates $8,000 to Pediatric Cancer Research

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Most families we know fighting cancer swear by Sweet’s Elderberry Syrup. Not only do we love their product, we love what they stand for in our community. During the month of March, Sweets Syrup celebrated their 4th birthday with Sweetsgiving, their annual campaign to give back to the community. During the first week of March, the Sweets team committed to donating 20% of their sales of Sweet’s Elderberry Syrup to ISF.

“I had hoped and prayed for a big week, and little did I know we would have OUR BIGGEST WEEK EVER!! 🙌🙌🙌Sweet’s Syrup is donating $8704 to the Isabella Santos Foundation to help fight pediatric cancer – a cause I support with all my heart. I can honestly say that in my four years in business, this is the pinnacle for me, the BEST. And thank you all for making it happen!!”

In early 2018, Sweet’s Syrup began donating organic elderberry syrup to nurses in the Neonatal Intensive Care Unit at Levine Children’s. Soon, this expanded to include the Pediatric Critical Care and Pediatric Oncology units. The little patients in these wards must be protected from infection, so it’s important that their caregivers have strong immune systems and come to work healthy. 

Sweet’s also provides 16-ounce bottles syrup to several families dealing with cancer, with the goal of helping them stay healthy during their child’s treatment. Qualifying families can DM Sweet’s via Facebook or Instagram. Those in the Charlotte area will be given a location to pick up syrup. If you live elsewhere, you’ll receive a special code to get a free bottle at www.sweetssyrup.com. Simply pay for shipping.

Shop online today or locate a Sweet’s retailer near you:  sweetssyrup.com