Tag Archive for: charlotte children’s cancer foundation

Holding on to every last minute we can…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Holding on to every last minute we can…

Father’s Day 2012

“She slept most of the day but was anxious to take Daddy to Red Lobster that evening for a Father’s Day dinner.  She mustered up the strength to put on a pretty dress and comb down her bed head.  We wrapped up his gifts which were a new water bottle with her artwork on it from school and a recordable story book.  I bought this adorable book that is about how I am always thinking of you or want to be with you when are away.  Very cute book but means even more when it is applied to Isabella.  I worked with Ib for about an hour on Friday night, recording her reading each page.  It is so priceless.  She and Daddy went out to eat and she tried her very best to not be sick at dinner.  But she struggled so much as she waited for him to open his gifts.   They had to get dinner to go because she just wasn’t well and the minute he put her in the car, she vomited.  They walked in the door with a full vomit bucket just an hour later.  I cleaned her up and put her to bed, giving her meds to knock her out.  I feel so awful for Stuart and I know how hard that dinner was for him.  He is breaking inside and sadness and pain are words that don’t even begin to describe it.  The anniversary of his Mother’s death from cancer is this week and his birthday is on the 24th.  I’m sick about the fact that I know Isabella is now going downhill and I just hate to think his birthday will hold this cloud over it forever.  It’s like the last slap in the face after all of his hard work to keep her alive.  So unfair and undeserving.  But today I will do the best I can to give him a wonderful Father’s Day.  We both know that it is the last Father’s Day he will have with 3 children, maybe even the last Sunday breakfast with 3 children.  All we can do is hold on to every last minute we can.”  – Isabella’s Mommy (Father’s Day 2012)

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

Forever grateful…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Forever grateful…

Isabella and Sara

“I met Isabella one week before she was diagnosed at her birthday party. I was introduced to the Santos family through a mutual friend and was drawn to this kid the moment I met her. She had an infectious laugh, the sweetest voice and was a fighter from day one.

I loved just watching her run around playing, singing, taking her and her BFF Soliel to Chuck E Cheese, watching her grow into a young lady, watching her with Grant and Phi, loving on Jake the cat and Bailey the dog. BEING A KID. Just wishing it could all be normal for her.

One thing that I will be grateful for forever… Erin and Stuart allowed me to say goodbye to her. Coming in and seeing her and her worn out body, yet she managed a smile when she saw me. Just sitting there with her while Miss. Chrissy scratched her back. When leaving telling her that I loved her and her saying it back to me in her sweet voice is something that will never be erased from my mind.

10 yrs later, people that never met her love her. It says a lot about who she was. She was one in a million and the reason I do what I do year after year……for her ❤” – Sara Moody, family friend

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

There is nothing better than summer camp…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

There is nothing better than summer camp…

Isabella at Camp CARE, 2011

“Today we drop off Grant and Sophia for a week of overnight camp.

Grant is a 3 year veteran who pretty much threw stuff together in a big ball and was ready to walk out the door.  Un-phased per usual on leaving the nest or putting thought into preparation.  He has the confidence to meet new kids, spend time with old friends and live an independent life all week long.

This is Sophia’s first year at the tender age of 7.  She is exactly like Isabella as she packs neatly and stacks them just so as she crosses items off the list.  Each piece carefully thought through for every situation.  Her room is cleaned and all of her stuffed animals are tucked neatly in her bed.  She is of course worried about Jake the cat getting enough love while she was gone.  Her heart is bigger than anyone I have ever met.  The amount of hugs and kisses we will get will climb near 100 before we drop her.  Her excitement is building to spend a whole week with her best friend Anna, hoping they will bunk together with their flashlights under the covers, giggling as they trade stories.  It’s so precious to watch.

Isabella’s journey has given us two kids that have no fear of the unknown, new people or independence.  There will be no tears, just the thrill of the week ahead.  It’s a great thing as parents to watch.

Isabella at Camp CARE, 2011

Isabella was able to enjoy a week of sleep-over camp thanks to Camp CARE in 2011.  She mirrored Sophia, as they always seem to do.  No fear, just excitement and the planning was very detailed.  Stuart and I were so nervous sending her that year, but she was in such good hands.  We loved that for a week in the summer she lived like a normal, healthy child and had the memories of camp to hold on to.  No tears, just happiness.

Grant heads to Camp CARE next week, Isabella’s stomping grounds, to be with kids who are battling and siblings who of those lost their battle.  It’s a grounding experience for him each year and I hope that he can feel Isabella’s presence there, wishing she was there alongside him.”

-Isabella’s Mommy (June 11, 2017)

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

1st Annual Isabella Santos Scholarship Winner

We are thrilled to announce our 1st Annual Isabella Santos Scholarship Winner, Leah Shelton.  Leah was one of many who submitted an application for a $1,000 community service scholarship.  Leah is graduating from Marvin Ridge High School and will be attending Vanderbilt University in the fall.  It’s pretty amazing to think that Leah was in 8th grade when Isabella passed away… and look how Isabella’s legacy has carried on.

Isabella Santos Scholarship Application, Leah Shelton

Karen Murphy (ISF Event & Volunteer Director) and Leah Shelton

Hand in hand, Destinee and I step out of the shiny black limousine. The repeated click of a camera signifies that her mother follows close behind, eager to capture Destinee’s rare display of affection. All eyes are on us as we walk the red carpet, and although Destinee looks stunning in her floral dress that I helped her choose several weeks prior, she keeps her head down. I speak some words of encouragement, not expecting a reply from my nonverbal honoree. But then, something so unexpected happens that I pause for a minute: she squeezes my hand. Small moments like these remind me why I engage in community service. It is so easy to forget the real reason for volunteering when so many are caught up in graduation requirements, college applications, and resume-building. I volunteer because I have abundant joy that cannot be contained to me alone. I want others to share in this joy, and I struggle knowing that there are so many people in the world that do not have enough reasons to be happy. Being a Youth Mentor for the Sandbox, an organization that locks arms with families of children with cancer or another life-altering illness, provided me the perfect opportunity to share my positive energy. AlthoughDestinee’s illness is incurable, helping her to forget about her troubles, even if just for one night during the Evening of Believing Prom, was one small way that I could help bring a little more light into the world. To most people in the “Marvin Bubble,” issues like cancer seem so far removed from reality that they are often treated as irrelevant. I am an optimist, downright Pollyanna at times, and I often fall victim to the superficial sense of security and insistently sanguine perspective that exists in our little bubble. However, volunteerism helps to keep me grounded, humble, and connected to issues like cancer that are of such global significance. My purpose in aiding an organization that works to combat cancer is not to minimize my positive attitude, but rather to help others in a way that spreads this positivity.

  • Varsity Dance Team (grades 9-12)
  • Student Council (grades 9-12): Sophomore Class Vice President, Junior Class President
  • Spanish National Honor Society (grades 10-12): Vice President
  • National Honor Society (grades 11-12)
  • Junior Art League of Waxhaw (grades 9-12): Create community art pieces, volunteer at community art events, and learn about new artistic media and techniques from local artists.
  • Youth Mentor for the Sandbox (grades 11-12): Support families of children with cancer or another life-altering illness. Work to meet a fundraising goal of $500, represent the Sandbox in community events, and serve as an advocate for honoree as they prepare and participate in An Evening of Believing Prom.
  • Domestic Violence Advocacy (grades 11-12): Initiated a campaign to spread awareness for teen dating violence at Marvin Ridge. Coordinated with Turning Point to put on a presentation for ninth grade health classes. Volunteer at Second Chance Boutique. Working to continue campaign this May.
  • Assistant Coach for Middle School Dance Team (grade 12)
  • Assistant Dance Teacher at the Dance District of NC (grade 12)
  • Isabella Santos 5K Run for Kid’s Cancer (grades 7-12)
  • Progressive Movement Arts Centre Senior Company Team (grades 9-10)
  • The Dance District of NC (grades 11-12)
  • Queen City Audio, Video and Appliances Community Heroes Award (grade 12)
  • Varsity Dance Team Heart of a Maverick Award (grade 12)
  • Universal Dance Association All-American Dancer (grades 11-12)
  • 2017 National Merit Commendation
  • Outstanding Achievement Award for IB Spanish (grade 11)
  • Varsity Dance Team Most Improved Award (grade 9)
  • Academic Excellence Award (grades 9-12)

I plan to attend Vanderbilt University in the fall, and I expect to major in either chemistry or biochemistry. While I am still unsure where my academic journey will lead me in life, I know that I want to use the knowledge I gain to make the world a better place. Whether that is by discovering a cure for cancer or merely making a patient smile, I hope to find ways to spread as much joy as possible.  I have been extensively involved with a variety of community service organizations throughout middle and high school, and I plan to continue this involvement as I transition to college and adulthood. Teen dating violence is one cause that is particularly important to me, and I have spent the last several years spreading awareness and volunteering for a domestic abuse advocacy organization. As I begin a new chapter of my life next year, I hope to continue to empower young people to have healthier relationships. There is no way to “solve” domestic violence; however, by educating people about the warning signs, the prevalence and severity of this issue can be drastically reduced. In college, where many sexual assault cases go completely unnoticed, I hope to be the voice of those who are too afraid to speak, advocating for everyone’s fundamental right to love and respect. The best way to encourage others to have a positive impact on their community is to lead by example. Positivity is contagious, and if I continue to show those around me that service is a fun and rewarding experience that fosters inclusion, expands one’s global view, and provides an opportunity to apply academic learning to genuine human needs, I believe that they will be inspired to do the same.

The most critical way by which ISF can inspire teens to make Isabella’s dream a lifelong passion is to encourage them to create personal connections with cancer patients. I remember cheering on Isabella while volunteering at the Isabella Santos 5K with the Marvin Ridge Dance Team. She had just dyed her hair red so she could look like Ariel, her favorite princess (and mine!) Isabella was not able to attend the subsequent races, but the stories I heard of the profound effect she had on those around her impassioned me to promote this worthy cause. One of the most eye-opening experiences of my teenage years was serving as a youth mentor for the Sandbox. Earning the opportunity to form such a strong relationship with a child battling a chronic illness increased my awareness about those who face adversity every day, and this motivated me to continue to make a difference. In this way, these children became more than just statistics or sob stories in a magazine. They became real people, inspiring characters, who astound me every day with their incredible strength. ISF should create opportunities for youth to hear personal stories and interact directly with kids and families that are impacted by cancer. The presence of the Santos family in the Marvin Ridge community has always kept this cause in the forefront of my mind, so I believe that others will feel the same way if they can have a similar experience. Teens are always looking for opportunities to volunteer that are accessible and fit into their busy lives, therefore ISF should look for ways to tie service and fundraising into things that teens are already doing like sports teams and clubs.

Isabella’s Cooking Show

Written by Connie Stewart, Isabella’s Grandma

Let me start off by saying that my mom is an amazing baker.  She is known for her German chocolate cake, coconut cream pie and brownies with homemade icing.  My daughter Amy is known for her many varieties of cookies and creative cakes and I dabble in baking a bit with cake pops and strawberry cakes.  If you know Erin, you know that she was more than happy to step aside and pass this trait on to Isabella.  She didn’t like the mess it created and would much rather pull out a roll of cookie dough from the refrigerator and have warm cookies in 15 minutes with no mess.  Erin would get out the mixer, point to the flour and sugar and say “There you go”.  But Isabella loved to bake and I was very happy to help her.  And I do mean, help her.  She was always in charge and I was the one getting the eggs, flour and various ingredients.  She would handle everything from there.

As far back as I can remember, she would pull up a little step stool and put on an apron and do whatever she could to bake something.  One christmas when she was maybe 5 years old, we got her an apron with her name embroidered on it and a baking set with measuring cups, measuring spoons and bowls.  The was so excited to break it open and begin cooking.  I think she actually fixed scrambled eggs for breakfast for us that morning with a little instruction from her dad.

But her favorite things to make were cookies, cupcakes and cakes.  One Easter weekend, Isabella and I spent the entire afternoon baking, icing and decorating a bunny cake complete with jelly beans and sprinkles.  She was so proud of it.  Later that night, her Uncle Nathan came over and when she offered him a piece he took a big piece of the bunny butt.  She couldn’t stop giggling about that and her infectious laugh made us all laugh too.

I think my favorite memory of her cooking skills came in 2011 when all of us were together for an ISF Face.  Another one of Isabella’s favorite things was spending time with her cousins.  Amy’s three girls were close to her age and she love just running with them and giggling.  One this particular day, the four of them spent hours planning a cooking show.  Actually, it was not just a cooking show it was “The Isabella Cooking Show”.  They decided to hold the show in the garage on the pink stage that her dad had built.  They designed a sign, wrote out a menu, and set up the stage and chairs for the audience complete with a microphone.  Everyone on stage had to wear a cupcake t-shirt and the color theme was, of course, pink.  They made blueberry muffins and explained the process which took an entire two minutes.  Isabella took center stage and stirred the batter over and over and over.  They had not quite planned what to do next so they passed around a microphone and took questions from the audience ranging from “How long do these muffins bake” to “Can Sophia help you?” which met with a resounding “NO!”.

One thing about Isabella and her baking was that she never wanted to eat the things that she made.  I don’t know if she didn’t care of the things that she baked or that she knew something I didn’t about what went into it.  Mmmmm… Either way, I loved the time that we shared doing this.  It was a time for the two of us to just talk and laugh.  She would tell me about things that went on at school, her boyfriend, Joey, or how her brother and sister were annoying her.  I would tell her about her cousins or ask her about some of the places she had been all while we continued mixing and measuring.  I know that she didn’t get it at the time, but for me, this was perfect.  It was my chance to share something my mom, my daughters and now my granddaughter enjoyed.

I know this year the Easter Bunny brought Sophia some baking supplies.  Hopefully I will get some ‘banking time’ with her too.