Tag Archive for: rare pediatric cancer

I Run for a Cure

/in , /by

Christine Brent, Isabella’s Dream Team

It’s amazing how someone can impact your life forever.  For Christine Brent, it started almost a decade ago.  Christine met The Santos’ when they were expecting Isabella.  She helped Erin decorate her nursery, she knew when Isabella was diagnosed with cancer, and she committed to help the Isabella Santos Foundation any way that she could.  Family donations.  Fundraising support through her career.  Volunteering on the marketing committee.  Joining the ISF Dream Team.  It has been life changing for Christine, and nothing gets in her way.

About two years ago, Christine started to notice that her hip was giving her fits.  After several visits with doctors, they concluded she had hip dysplasia.  It got to a point where she could not sleep, barely walk, and the pain was no longer tolerable.  She only had one option left – a hip replacement.  

On March 19th, Christine received a hip replacement.  She walked on day one.  She was off of a walker by week two.  She followed every exercise and stretch they recommended.  She was released and back to work 4 weeks after her hip replacement.

So how is she today?  She is training with the ISF Dream Team for a race this Fall.  She has accomplished the Savannah Half Marathon, the Savannah Half Marathon Relay, and the Charlotte Marathon Relay with the Dream Team.  And, she will do it again!  Christine Brent will not stop giving back for Isabella.

“I run for all those who fight now, have fought in the past, or will fight in the future.  I run for a cure.”

Christine’s goal is to raise $7,000 this year for Isabella.  Help her reach her goal by donating to her First Giving page:  https://www.firstgiving.com/fundraiser/keithandchristine-brent-1/2018-Isabella-s-Dream-Team.

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.

 

The “C” Word

/in , /by

Ashley & Brian, Isabella’s Dream Team

The “C” word.  Cancer.  All of us have been affected by cancer . . . . someway, somehow in our lives.  It could be your best friend.  Your neighbor.  Your colleague.  Your mom.  Your brother.  Your wife. Your child.  Regardless of how you have been affected by the “C” word in your life, it isn’t easy.

Ashley Allred has been affected by cancer in her life.  Her first grade teacher was diagnosed with cancer.  Her second grade teacher was diagnosed with breast cancer and unfortunately lost her battle when she was in third grade.  Her mom was diagnosed with breast cancer.  And then Ashley became a teacher herself… her student was diagnosed with cancer.  It has affected Ashley too many times to count.  She decided it was time to find a way to give back and help find a cure.

Ashley found out about the Isabella Santos Foundation through her elementary school student.  Not only was it a way to support her student, but she could also help raise awareness and funds for pediatric cancer. She joined the Isabella’s Dream Team in 2017, training to run a half marathon while raising money for pediatric cancer.  Now, she is helping lead the ISF Dream Team, training to run another race, raising money for pediatric cancer through her connections and creative partnerships, and she is making a difference.  

If you want to honor someone in your life who has been affected by cancer, you can help make a difference too.  It’s not too late to join the Dream Team. 

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte pediatric cancer community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.

Cancer Stole My Sister

/in /by

Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

– Grant Santos, Isabella’s Brother

*******************
It started with a girl. And she is changing the world. June 28th will mark the 6th anniversary of Isabella’s passing. Please help us near and far keep Isabella’s legacy alive.
 
– Make a donation: donateisf.org
– Participate in our Sept 5K/10K: 5kforkidscancer.com
– Sign up as a MIBG Ambassador: https://bit.ly/2MsUQdm
– Sign up for Isabella’s Dream team: https://bit.ly/2smlhqh
– Participate in our CBCC platelet drive June 21-28: https://bit.ly/2sVjafX

MIBG Construction Update #2, Levine Children’s Hospital

/in , , /by

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

/in , /by

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