Tag Archive for: rare childhood cancer

Big Heroes Come In Small Packages

Madison and mom Laura

*UPDATE 2/25: After almost a year ago of being diagnosed with osteosarcoma, a rare pediatric cancer, Madison received the news she has been fighting so hard for at her 3 months scan. She beat cancer. She will continue to have maintenance scans and therapy on her leg, but was able to ‘Ring the Bell’ at Levine Children’s Hospital signifying the end of her treatment and beginning of living life cancer free!

Oh, and she got a puppy! Oakley, a black Goldendoodle!

Madison was diagnosed this past April with osteosarcoma at age five. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. She continues to receive chemotherapy and recover from her surgery. Once Madison gets the green light from her doctors to be more mobile, she is determined to learn to walk again so she can earn a super cute bribe from her parents – a Golden Retriever puppy. 

A Community of Support

Madison and her family live two hours from Charlotte in Scotland County. She and her mom make the drive each week to Atrium Health’s Levine Children’s Hospital where Madison receives in-patient treatment Thursday-Saturday. They then return home for four days to be with their family – Madison’s dad, Michael, and big sister, Riley – and where Laura teaches three days a week. 

“Madison’s diagnosis has changed us all,” says Laura. “Michael and I have to raise each of our daughters as single parents during the days when we are in Charlotte for treatment. The hardest part is not being together under the same roof. We are very grateful for the great friends we have made through this journey. You realize you can’t do this alone so you learn to rely on support from others.”

Chef Madison

Team Madison

For the remainder of the year, Madison will be homebound where she loves to cook, bake, do crafts and make “how-to” videos on her mom’s phone. When she finishes chemo in December, she’ll resume her favorite activities including: dance classes, swimming and learning how to ride her bike.

In January, she will start kindergarten at the school where Laura teaches and where they already have a tremendous community of support. Faculty and students have created “Team Madison” in honor of Madison for the American Cancer Society’s Relay For Life of Scotland County. Laura and Madison stay busy supporting the team. It all started with their Levine Children’s Hospital life coach bringing them some beads to make necklaces and bracelets. From there, Laura and Madison started making “Madison’s Hope Rope” key chains that they give to patients at Levine Children’s Hospital and sell to raise funds for their Relay For Life team and other cancer organizations. 

“Madison is our hero and is such an inspiration,” says Laura. “She’s such a good kid and is all about wanting to help other people. Even though she’s five, she’s changing people’s lives.”

Madison and sister Riley

Inspiring Others to Live Mutual

By Tim Flanagan, President of MassMutual Carolinas, 2018 ISF Sustaining Sponsor

Tim Flanagan and Caitlin Flanagan at the ISF 5K/10K for Kids Cancer

MassMutual Carolinas is proud to be a Sustaining Sponsor of the Isabella Santos Foundation. As a General Agency of Massachusetts Mutual Life Insurance Company (MassMutual), we are backed by a mutually owned company that has helped people keep their promises, protect their families, and support their communities since 1851. MassMutual calls it Living Mutual, and it’s in their DNA. Ours too: along with MassMutual, we have been committed to serving our clients and giving back to our community since our doors first opened in 1890.

We pride ourselves on living out our core values – balance, growth, authenticity, conviction and stewardship – and ensuring that our clients have a secure financial future and protect the ones they love. Through this and living mutual, we are committed to inspiring others to rely on one another, give back, be interdependent to achieve happiness, make meaningful contributions and to be interconnected with our families, community and workplace.

The concept of living mutual is the core of our involvement with ISF. I have felt personally connected with the organization from day one when I ran – along with Caitlin Flanagan, my daughter and our firm’s strategic relationship manager – my first ISF 5K/10K for Kids Cancer. We hit the ground running in our support of this incredible organization and never looked back. Since then, many of our team members have gotten involved, followed by our firm becoming a Sustaining Sponsor in 2017.

The Isabella Santos Foundation is an upstanding and authentic organization that we value and believe in for many reasons. We appreciate being part of this amazing team, seeing where the funds are going in our community, and being inspired by the faces of who ISF supports. Through our partnership with ISF, we are relying on one another to make a meaningful contribution and impact on pediatric cancer research and patients. That’s a powerful way to live mutual.

Visit the MassMutual Carolinas website

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Timothy C. Flanagan, Jr., CLU, ChFC, CFP®, ChSNC™, CFBS, President of MassMutual Carolinas, is a registered representative of and offers securities, investment advisory and financial planning services through MML Investors Services, LLC Member SIPC (www.SIPC.org). Supervisory Office: 4350 Congress Street Suite 300, Charlotte, NC 28209 (704) 557-9600. Parent Financial is not a subsidiary or affiliate of MML Investors Services, LLC. CRN202008-235692

MIBG Construction Update #2, Levine Children’s Hospital

Our day is made when we receive MIBG treatment room construction updates from Nurse Dawn, Levine Children’s Hospital MIBG Therapy Program Director!  This is really happening… look at the ISF MIBG sign that labels the suite!  Steel beams will be going up next and the lead brick walls will be installed in about 4-6 weeks. The suite was designed with lead bricks, a radiation shielding element, and will include lead-lined floors, walls, and ceilings.  This will protect and manage the MIBG Therapy safely for both patients and staff.  Lead bricks are extremely heavy, we can’t wait to see photos/video of them lifting them up to the top floor of LCH! 

The ISF MIBG treatment suite enables parents to stay close to their child throughout the cancer treatment, and consists of a lead-lined patient room, an adjoining room with a lead-lined viewing window where family members can spend the night.

LCH Core Nursing Staff training is coming up on June 19th and 26th. Dawn will be sharing tons of information soon to help educate everyone on MIBG treatment, family education and even what to expect as a patient.  

We love that Dawn got her own personal hard hat to keep because she likes to check on construction progress often.  We couldn’t have asked for a better MIBG Therapy Program Director… and we look forward to sharing her story soon too!  It’s the Dawns’ of the world that are making these visions of better cancer care become a reality.

We are looking for individuals who want to be part of providing comfortable care for the kids/families that go through MIBG Treatment. Our new MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}

Update #1: MIBG Treatment Room Construction Begins at Levine Children’s Hospital

 

 

 

 

 

 

 

 

 

 

Committed to Improving Pediatric Cancer Care in Charlotte and Beyond

Isabella Santos Foundation

Press Conference News coverage  |  Press Conference Video

Today we announced  the largest commitment we have ever made. We are a bit scared. Very emotional. The Isabella Santos Foundation commits  $5 million to establish The Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s Hospital.  This program will oversee care for all solid tumors, rare tumors, MIBG therapy, and all related clinical and scientific research at LCH.  We are ready to take that next step by creating a rare and special pediatric cancer program that will be the first of its kind in the United States.

We might be scared. We might be emotional.  But we feel… Energized. Hopeful. Determined. Grateful.

Our partnership with LCH will allow us to continue the legacy Isabella left.  Isabella’s motto was: Beat. Grow. Live.  “Beat cancer, grow my hair, live my dreams.”  The foundation in her name dedicates itself to broadening that, so that other kids fighting cancer may Beat (the odds), Grow (awareness), and Live (without fear).

During the LCH press conference today for the partnership announcement, Erin Santos spoke about what this day means for her personally…

“First of all I just want to take a moment and thank the team of ISF that is with me today.  I always say after events like this to remember, every time you hear the word “Erin” it really means us.  I am nothing without all of you standing next to me and none of this would happen without the people here today.

October 6th, 2007 – this day has always meant something to me because it was the day my life changed forever.  My 2-year-old daughter was next to us in pigtails – wearing a pink t-shirt with a mermaid on it that we bought her at the Fort Fisher Aquarium that summer.  We weren’t sure what we were going to be told in that tiny room but in just moments we were introduced to a word we had never heard.  Neuroblastoma.  We were quickly taken to a waiting room in clinic that would become our home for 5 years and would soon meet our new oncology family, who I still see in the audience today.  

Sure, we may of known on that day that our life would change forever.  But what we didn’t know is that the little girl that just walked through their clinic doors would change their lives forever too.  The domino effect of that day is still falling.   

I look out into this sea of faces and I see lives that will never be the same because of her.  All of the people who were there from the beginning who made my cause, their cause.  I can see kids that like her will be walked into a clinic waiting room and will see and feel this domino effect of her life due to this gift and that gives me hope and inspires us to make this commitment.

For us to take on this huge milestone with Levine, it is more than just a check.  We are not famous or wealthy – we are just normal people who are doing amazing things.  The blood, sweat and tears that we will put into raising this money will keep us up at night.   But the faith that we have in Javier, Callie, all the doctors, nurses and administration keep us moving towards this goal because we believe in you.  I know this will be one of the best things you will ever do with your life, just like us.  We are in this together and we are beyond excited to watch this program grow into something that will receive nationwide attention and bring kids from all over the country to Charlotte to have the best chance of survival.  No pressure – but I know you feel the pressure.

So thank you for allowing us to be a part of the biggest thing to happen for kids with cancer in Charlotte region and beyond.  I can’t wait to see Isabella’s name on the center that brings new hope, treatments and cures to kids with rare pediatric cancers.  The only thing better would be to have here her alongside me, but in a way – I think we all know she is.”

With this $5 million 5-year initiative, we will be changing lives.  We will be the foundation of something special.  We will have the best pediatric cancer program, right here in Charlotte, North Carolina.  And we need your help.

MORE:

The Isabella Santos Foundation Commits $5 Million to Create Rare & Solid Tumor Program at Levine Children’s Hospital

Levine Children’s Hospital gets $5M for cancer fight

Atrium Health’s Levine Children’s Hospital announce $5 million donation from Isabella Santos Foundation

$5 Million Has Been Donated to Treat Childhood Cancers by a Foundation Set Up by Parents

New specialized treatment room coming to Levine Children’s Hospital, care of Isabella Santos

Levine Children’s Hospital Gets One Of Its Largest Donations in History

$5M donation will create ‘rare and solid tumor’ program at Levine

Pediatric cancer care gets $5M boost from Isabella Santos Foundation