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Defining Support, The Cancer Mom Series: Eileen

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

By Eileen Kellgren

Eileen is Mom to Sydney, who is currently 14 years old, finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018. 

Support is lack of expectation.  It’s showing up whether you think you’re needed or not or whether you know what to do or not.

This ugly beast swallows children, siblings, families – all in the painful way only another cancer mom can understand so we don’t expect you to know what to do – heck – we don’t even know what to do ourselves!  One day we are living our lives and the next we are facing the unthinkable … #surreal.

It’s not the flu, it’s not ok, it doesn’t feel comfortable to walk this journey, to see your child suffer week after week, appointment after appointment, scared, lost, sometimes losing hope.  And all you feel is FEAR at every turn. Life. Threatening. Fear.

So many lose so much and if you’re lucky to be left alive and in tact after all is said and done then the fight to comeback is just the beginning.  

So when others show up, and don’t hide because they may not know what to do, it makes all the difference.  When a cancer mom doesn’t feel alone it’s the best gift of all 💗.

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.

MAY CANCER MOM SERIES:

Another Year Older She Should Have Been

I have been around since Isabella was sick.  I traveled with Erin and Isabella for cancer treatments when Stuart needed to stay in Charlotte to work.  I was part of the friend rotation that helped with Grant and Sophia, arranged meal schedules, and managed household needs.  I have watched from the outside looking in, witnessed how different grief can look and how Isabella’s parents celebrate special dates like tomorrow, her birthday.  For Erin, she is in need for a time out.  She needs to get out of town where she won’t run into everyone who knows what the day signifies and hear their sentiments. She appreciates them but needs space.  She reads every text, social post, and email, but she just needs the time to breathe and process.  Stuart is in town spending time with the kids and will donate blood for Isabella’s blood drive.  He has always thrived during these times by being around others.  They grieved differently.  They have moved forward processing in different ways.  And that’s ok, grief looks different on everyone.

Tomorrow will always be a tough one. Isabella’s parents will continue to count birthdays and envision what she would have been like or into.  There will always be another year older she should have been.  Their hearts ache to celebrate her on this special day but are left intensely aware of the hole in their hearts instead.  

Every year this occasion looks a little bit different for the foundation.  ISF always celebrates Isabella’s birthday with a blood drive and over the years the entire month of March has turned into honoring her life with different partner events.  But this year we feel a shift.  An incredibly positive shift. One year ago we were gathered at Levine Children’s Hospital for the MIBG Therapy Suite ribbon-cutting ceremony.  8 months later it was complete.  Today it is open and accepting children fighting neuroblastoma.  We are collaborating with organizations and individuals around our great city to make a Rare Pediatric Cancer Program at Levine’s happen.  And tomorrow,  hundreds of people are donating blood at Community Blood Center of the Carolinas in her honor – our biggest blood drive ever!  We always knew it, but we can unquestionably see and feel all the GOOD coming from Isabella’s life.  And it feels powerful… powerful to know her life inspired so much.

After Isabella passed away one of our close friends collected letters from family, friends, and followers on their favorite Isabella memories and how she impacted them personally.  Her goal was to put together a book with all the letters as an everlasting memory of the inspiration Isabella was to all around her.  Although the project was never complete, I just recently got my hands on what many submitted.  I read them and the tears started rolling… I mean some of these letters make it feel like Isabella was just here with us.   I wanted to share a couple excerpts from several letters that jumped out at me…

My final and favorite memory of Isabella and Joey together took place about 6 weeks before Joey died when we were all in the infusion together for the day. It is unclear to me as to why, but that day spent at clinic was seared onto my fragile, tender heart and I think about it often. It still makes me cry when I think about the two of them planning their wedding all while sweeping the floor with a little broom they had managed to pry from the nurse’s hands.  Isabella was in full planning mode, even asking nurse Paula to be the bridesmaid while Joey made it clear that Isabella would be responsible for laundry and cooking while he watched Star Wars on the couch.  Giggling and childish chatter filled that space on that sunny afternoon and as always our amazing little boy and beautiful little girl looked to hope and to life.   I still find it a miracle that laughter and hope were found in that sick ward on that January day.” -Maggie Aquaro, Mom to Joey who passed from neuroblastoma before Isabella

“I never met Isabella but felt that I knew her well. She was a part of our family; my children knew her and asked about her daily. We read her CaringBridge site together. She was in our nightly prayers. I celebrated the remissions of her disease and felt my heart break with the posts that informed us that “it” was back. With each entry that Ib’s mother wrote I marveled at her strength and grace and saw where Ib got her spirit. Ib lost her battle on June 28, 2012. Though I never met her, Isabella left a mark on my life that will be with me forever. She taught me that you never, ever give up no matter how bleak the circumstances, that manicures and pedicures and a slice of good pizza can make you feel better and that every girl has the right to feel like a princess. Ib was a gift and I thank her family for sharing her story with us.” -Meghan Mack, followed Isabella’s story through a Santos family friend

“The impact Isabella made on her class at Marvin was lasting.  She was witty, engaging, happy and most of all strong.  For me, her strength will remind me to continue to keep going with whatever it is that needs to be done… and to always do it with love.”  -Mrs. Perrone, Isabella’s Kindergarten teacher, Marvin Elementary

“Isabella brought something to our family that’s invaluable.  She showed my daughter a part of life that most 6 or 7-year-olds (and many adults for that matter) don’t get to see.  Isabella’s influence has Sydney and our entire family helping others and has built a foundation for a life with better understanding and compassion.  I have a feeling that everyone who came into contact with Isabella was forever changed and that’s a positive for the world moving forward.  Who knows which one of these kids will find the cure for cancer because they never forgot what it was like seeing what Isabella went through.  As a parent, as little consolation, as it may be, I would want to know that my daughter’s life had a profound effect on those she came into contact with.  It did.” -Chris Wilcox, Woody & Wilcox Show, 106.5 The End

I have so many memories of Isabella and love that they stay so fresh in my mind through working with the foundation.  I will never un-see all the moments during my time with her during her cancer treatments.  I saw too much to not continue fighting in her honor.  I am incredibly grateful that it is through her I am working for something bigger than myself.  And I know all of the girls who work for the foundation feel the same.

On behalf of a little girl who should have been 14 tomorrow, thank you for supporting her foundation.  Thank you for helping us continue her legacy and do something big for other kids fighting cancer.   If you knew Isabella or simply have followed her story… comment below with your favorite Isabella memory or how she has impacted your life.  

-Rachel Wood, ISF Director of Marketing

We are still raising funds for Isabella’s Wish Fundraiser to help fund a wish for another child fighting cancer. Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish.  Read Erin’s blog entry about visiting with Sydney, whose wish you helped us fund last year. 

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Honor a Cancer Fighter’s Life Taken Too Soon

Isabella passed away at 7 years old from neuroblastoma, if she was here today she would be turning 14 on Saturday. She would be in middle school. She would most likely be into boys. She would be fighting with her siblings at home and meeting friends at the movies.  There is no question Isabella’s life was cut too short, but there is also no question that her legacy is creating hope for so many.

Please join us in honoring Isabella’s life this month: 

DONATE BLOOD:  Make your appointment for March 9th, our largest blood drive ever with Community Blood Center of the Carolinas. Locations throughout the greater Charlotte region available.

DONATE TO ISABELLA’S WISH FUNDRAISER:  Help us fund a wish for another child fighting cancer. Did you read Erin’s blog post about meeting with the Make-A-Wish child we helped fund last year?

EAT SUBS:  Eat at Jersey Mikes all month long. Plan on joining us March 27th for Day of Giving when 100% of proceeds come back to ISF. 39 locations to choose from across the greater Charlotte area.

Isabella Would Have Been 14

Written by Erin Santos, ISF Executive Director & President

6 years ago you couldn’t pay me to sit and have coffee with a little girl who beat cancer and was also Isabella’s age.  No Thank You!  But time has passed and now I find myself being eager to be in the presence of 13 and 14-year-old girls.  I’m constantly wondering what they are into, how they behave and what they say.  So when I got the opportunity to meet Sydney, who beat cancer last year I was excited about our meet and greet.  Side note, we also helped fund her Make-A-Wish trip to go to London for the ultimate Harry Potter experience.  Another side note, Sidney’s sister was in Grant’s preschool class at Calvary when Isabella was diagnosed and fighting.  We had no clue at the time of raising funds for her trip that it was for a girl who we once had this connection with. Full circle.

This girl was precious… like beyond precious.  She was beautiful and mature and wise beyond her years.  I find these are all traits of a child who has stared death in the eye more than once.  I couldn’t stop listening to her talk and was consumed with the fact that she let her mom dote on her and play with her hair while she talked to us.  Any other teen would have swatted her Mom’s hand away.  But I feel like Sydney allowed it because she knew her Mom too went through something and knows she is lucky to be alive.  

I loved listening to her talk about the doctors and procedures and how it really felt to go through all her treatment.  And then I asked the question, “So what do you want to be when you grow up?”  Such an innocent question but as she answered, I felt a lump in my throat and the tears beginning to swell.  So jealous that she can answer this question and how I craved being able to ask it of my own daughter.   No matter how much I try to hide the pain, this family knows that no longer how much time has passed or how good I say I’m doing now – they really are the lucky ones.  They are in fact sitting with a Mom who should have a daughter sitting along with us.  Who knows, they could have even been friends.

Sydney immediately came to my side and put her arms around me and started to cry.  It was so touching to me.  I don’t know if she was crying because she was sad for me or sad for Isabella or wondering how she survived and Isabella didn’t.  It could have been a number of things but I have to say that it has been years since someone touched me in that way.  The hug lasted a long time.  For those of you who know me – that means it was over 5 seconds.  But his hug lasted for minutes.  I tried to release her but she wouldn’t let go.  It was if she knew I needed it.  She was right.

I don’t know what Sydney’s life has ahead for her, but I know it’s going to be amazing.  I’m excited to sit back and watch because this girl deserves every single minute of it and I know she will live it not only for her and her family but for some of those who didn’t get the chance to live it and I love that.  It makes me think that while some weren’t meant to survive, she is one that was meant to live.   Isabella’s birthday is in March. We can’t think of a better gift than to honor another child’s wish in honor of Isabella’s life. 

It is our goal to raise $6,000 in 14 days for what would have been Isabella’s 14th birthday.  14 years old… just like Sydney. Last year, you helped us make Sydney’s wish to visit the Harry Potter museum in London come true.  Sidney has finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018 at Levine Children’s Hospital signifying the beginning of living life cancer free.

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  Sydney and her family experienced the same.

We hope you will help us pass this on yet again. Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish.  

Isabella’s Birthday Wish Fundraiser

Isabella’s birthday is in March. We can’t think of a better gift than to honor another child’s wish in honor of Isabella’s life.  It is our goal to raise $6,000 in 14 days for what would have been Isabella’s 14th birthday.

Last year, you helped us make Sydney’s wish to visit the Harry Potter museum in London come true.  Sydney is currently 14 years old, finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018 at Levine Children’s Hospital signifying the beginning of living life cancer free. Isabella’s mom, Erin, recently sat down with Sydney to hear all about her trip.

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  Sydney and her family experienced the same. We hope you will help us pass this on yet again.

Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish.