Tag Archive for: charlotte pediatric cancer

Sometimes an 8 year old can just put everything in to perspective

Written by Erin Santos, Isabella’s Mom
X
I knew that Jersey Mike’s Subs Day of Giving was going to be good, but today exceeded my expectations. I knew lunch would be crazy so I spent my lunch watching social media flood with everyone I knew getting lunch while I patiently gave platelets at the blood center. Also, because this was about Isabella, I wanted to take the kids for family dinner tonight. We ventured out to a new location for us on East Boulevard. When we walked it, I was so excited to see the team in their Cancer Messed With shirts. They of course greeted us when we walked in, not knowing the story that just walked through the door. The first teammate noticed my shirt (CMW the wrong family) and said, “Hey! Look at us in our matching shirts!”. I told her I loved not only the shirts but everything they were doing today in honor of my daughter. I was Isabella’s Mom. The assembly line stopped and I was created immediately with hugs. Sophia of course proudly announces that she is her sister too. The manager tells me how honored they are to be a part of the process and how he read a great interview that I did in Creative Loafing a few years back. It hooked him and and he has been following us every since. He was happy to be a part of the team that provided dinner for the Levine families earlier this month and proudly showed me the photo on the wall.
 
Sophia and I proceeded to eat together in a booth alone as I listened to her talk about her day, stopping every so often to hug me. Midway through our meal, a man and a woman came over and shook my hand. They just wanted to come over and meet us. Turns out their son Tristan, was diagnosed with neuroblastoma at just 5 months old. He has had 4 rounds of chemotherapy and 2 surgeries already in just 9 months of life. They had always heard of us and were so excited to meet us and thank us for all that we are doing. I told them they were in great hands at Levine Children’s Hospital and NB caught under the age 2 has a very good prognosis. We would love to help them with anything they need but by the look on his face I felt like maybe we were already doing enough. He jokingly said that this sub will taste a whole lot better now after this and loved that it was going to help kids like his. He shook my hand again and looked me hard in the face and said, “Thank you.”.
 
Only a couple kids in Charlotte with NB and we stumble across them randomly tonight. I try not to let these things screw with my mind – the whole coincidence of it all so I turn back to Sophia. She says, “Mommy there is good and bad about Isabella dying. Bad because she can’t sit here with us at this table, but good because we are helping that baby.” I get one last hug and she is back to her food. Sometimes an 8 year old can just put everything in to perspective.
 
-Erin, Isabella’s Mommy

Magical Moments

A very special group of people sent the Santos family on their last Disney trip with Isabella right before she passed away. They knew that her most favorite memories were in Disney… and were determined to give Isabella and her family one last magical moment together. Isabella could barely get out of bed a good bit of the trip, but there were times the magic brought her out of her pain for just a few moments. Here she is watching fireworks right outside her balcony.

“We even decided to take her there just a couple of weeks before she passed away. Make-A-Wish has made this place the one place in the world that brought her the most happiness. We saw the impact that a wish trip had on her mental and physical state, as well as the rest of us. It made miracles happen for us – so many times.”

13-year old Sidney is fighting cancer… and we want to help bring her happiness too! From one magical moment to another, our hearts swell to think that we all could play a part in her WISH to visit the Harry Potter museum in London. We still have $3,000 left to raise to reach the $6,000 fundraising goal by March 31.  DETAILS and DONATE.

LETS BECOME A WISHMAKER TOGETHER IN HONOR OF ISABELLA!

The Best of Times, The Worst of Times: Two Sides to Every Story

Contributed by Wheela Sunstrom

They say time heals all wounds

Isabella Santos lost her battle to neuroblastoma at the age of 7.

For some, this is a myth…something that people say because, well, they don’t know what else to say. It’s something we hear throughout our lives, but never really weigh the meaning of until you have to. Because for some, no matter how much time passes, grief never goes away.

We have learned in our ISF journey that grief and happiness are all about perspective. When people perceive our organization, they generally see all of the good things we do!  From funding research and programs to supporting families in need to running events to a myriad of other accomplishments, they see hard work for the greater good. They see Isabella’s smiling face printed on glossy paper or cast high on a projection screen, their hearts overflowing for the brave little fighter.  They see volunteers, board members, sponsors, doctors, nurses, and families – a sea of purple – working tirelessly, but positively, to effect change.  They see congratulatory hugs, high-fives, happy dances and the like when something great happens.

What they don’t always see is the other side.  Though Isabella’s mom would normally be included in the list above, it’s a hard realization that every time ISF does something amazing, she is reminded that her child wasn’t afforded the opportunity. This is where happiness and sadness become muddled.  When Isabella’s name is attached to new programs, buildings, research, and anything else, Erin experiences the proudest moments of her life. And also the worst.  Her perspective has always been real and raw, shedding a different light for those who may only perceive our progress.

Isabella’s birthday is no different.  On the one hand, ISF is celebrating her life and the legacy she left behind.  A legacy that led to a momentous milestone in the addition of an MIBG treatment room to deliver targeted therapy to high-risk neuroblastoma patients.  This. Is. Huge.  ISF celebrates the incredible, rare opportunities this treatment room will provide for patients and their families. We shout, we high-five, we do a happy dance. It is a culmination of tireless work in Isabella’s memory, aptly unveiled on her 13th birthday. On the other hand, her mom is reminded that this was the treatment Isabella received a little too late. It stings. It gnaws. It burns.

We have learned everyday that grief and happiness can coexist. We will still smile and share the joy of our latest accomplishment, the gift of the MIBG treatment room. It’s okay for us to be happy about the things we are doing. And it’s okay to celebrate the birth and life of the brave little fighter on what would have been her 13th birthday.  Because, without her, none of this would be possible.

And it’s also okay that there is another side. The side where heartache sits. Because sometimes they go hand-in-hand.

13 – What Should have been, what could have been, and what it is

Written by Erin Santos, Isabella’s Mom

Erin Santos & daughter Isabella. Isabella lost her battle to neuroblastoma at the age of 7.

Tomorrow Friday, March 9th is a big one. 13.  Sure, each birthday number has a different meaning, but when I hear the number “13”,  it’s a big one for me. Luckily there are only a couple more that might really be daggers in the heart. 16, 18, 21 – I see you all waiting for me off in the distance. I will get to you eventually, but tonight – I’m staring the dreaded 13 right in the eye.

I guess because it means she no longer would have been a kid. Teenager is a scary word. First of all, I feel too young to have a teenager. Maybe because I’m single, I listen to dirty rap music, stay out too late,  and want to sleep until noon on the weekends – all traits of a teenager I guess. But then it had me thinking – is that what teenagers do? In true Erin form I constantly find myself avoiding girls her age. I don’t want to stand next to them because it would tell me how tall she would have been. I don’t want to listen to what they are talking about or think about the fact that they all have periods now and wear bras. In my head it seems crazy to me that she could have ever been one of those girls. My mind just won’t let me go there. But as I sit here and think about her, I realize that I prevent myself from knowing what 13 year olds girls are like. How do you know about them if you don’t have one? It’s definitely not something you can look up on the internet without getting flagged. TV doesn’t really depict true 13 year old girls either. So I decided to research it a bit.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

I find an unsuspecting person who has a teenage girl and just say, “Tell me everything she is into”, which I’m sure is a creepy question. But as they start talking I find myself  ridiculously-filled with questions that I almost have to sit on my hands. Questions start out basic enough, like: what kind of music does she like and does she have a boyfriend yet? Then, 40 questions later, I feel like I’m just getting started and have to prevent myself from having the full 2 hour interview I really want.   They listen to all kinds of music from electronic to rap to everything in between. They like SnapChat and Instagram Stories. They have boyfriends who they hold hands with at the mall. They only see this boy in group settings but ignore him at school. They are all at this tipping point of looking like kids one minute, then transforming into a woman the next, with the help of a dress and some makeup. They are into fashion. They binge Netflix. They want to go to the Melting Pot on their 13th  birthday with their friends and catch a movie after. Their girlfriends occasionally turn on them and the drama that ensues can be pretty hurtful. They are sweet and moody all at the same time, probably due to the period they just got for the first time this year. They can curl up to you like a baby one minute, but then have the most adult conversation the next. I could go on and on…

The coolest thing about finding these things out isn’t always the answers. Sometimes it’s hearing the excitement in the voices of parents as they talk  about them. While all the attributes they are telling me feel like tiny knives going into my heart, I find myself knowing that I, too, would be that boastful parent.  She would drive me crazy I’m sure – but all the little things that would have made her up would have been a little piece of me – the good and the bad. It would have been exciting to be a part of her ride to 13. As I digest all the attributes of a “normal” 13 year old, I find myself with this gut- wrenching feeling. Sure, some of it is jealousy… but some of it is the thought that this is what she should have been like.  Instead, I look at the life that was more realistic for me. She could have beaten the cancer, but then we would have had a 13 year old that probably wasn’t anything like the girl I described above. When you sign off on treatment plans, the list of side effects is an afterthought. To be honest, you really stop even reading them. The list is so horrible but at the time it doesn’t matter. You are just trying to keep her alive.

I think about the 13 year old that would have survived after years and years of grueling treatment and over 5 relapses.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

She has hearing aids due to the cisplatin that you gave her over and over. She is missing teeth from the chemotherapy cycle they properly named, “Kitchen sink” because that’s what it was. She’s a full 18 inches shorter than everyone because her body was never able to grow. She doesn’t play sports because her bones are so weak from the radiation you hit her with over and over. She struggles in school because she now has learning disabilities thanks to 5 years of treatment. Oh and she is probably held back because she missed so much school from being in the hospital so much. She is missing patches of hair due to brain radiation that prevented some places from ever growing back. She has trouble making friends because she is different and the friends she has feel like pity.

Let’s not even talk about a boyfriend or the road she has ahead of not being able to have children. She hates you because she is different and she blames you for it. And just when she figures out how to adapt to the cards she is dealt, she is diagnosed with ovarian cancer at 15 thanks to the high probability of a second cancer. This. This is what could have been.

You want to keep your child alive, every parent does. But sometimes they don’t survive. And you look at what could have been your life if they did and that scares the shit out of you too. I oftentimes wonder if she was taken because what could have been might  have just been worse. I know you aren’t supposed to say that because having them alive with a million problems is better than not having them at all, right? Right?

Erin Santos & daughter Isabella.  Isabella lost her battle to neuroblastoma at the age of 7.

Instead I get to look at what it is. For me, her 13th birthday will consist of opening my eyes tomorrow morning and being crippled with pain inside. I will get Grant and Sophia off to school and sit in my kitchen alone with a cup of coffee and cry my eyes out. It will eventually stop and I will get in the shower and distract myself. I will pick out a purple dress and dry my hair. I will pray that my eyes are not puffy and put on makeup to hide my face. I will drive up to Levine Children’s Hospital and cry again as I make my way along the path we drove for years to get her treatment. I will tilt my head to the side so the tears do not remove my eyeliner. I will put on my best ISF face as I enter the lobby of the hospital, knowing to keep the conversation light because if the wrong person says the wrong thing to me, I will find myself imprisoned in the bathroom.  I will make an inappropriate joke and thank large donors and supporters for coming to celebrate the new MIBG room we are building in Isabella’s name. I will carefully not watch the clock strike 11:12 am, the time she was born.

My ISF team and I will go to lunch where I will drink wine and pray they keep the conversation light. My drive home will be spent calling my Mom who will cry with me and tell me how much good has come from her short little life. My sister will call and will know to talk about everything except Isabella.  Someone will leave an anonymous gift on my porch to let me know they are thinking of me. The kids and I will take flowers and balloons to her site and they won’t really grasp the level of this visit but will kiss her stone and say “Happy Birthday”. I will sleep off the wine, troll social media then try to plan a night out of the house. My girlfriends will take me out and get me stupidly drunk, trying hard to have no real conversations with me about what my day has been like. They will try hard not to touch me because if they know me, a hug might break me in two. I will anxiously wait for the clock to strike 12:00, knowing this awful day is behind me. I will fall asleep in my clothes.

That is what Isabella’s 13th birthday is because my daughter got cancer and she died. Not at all the day I had planned for her when she was born, but now it is what it is. But on March 10th and in true Erin fashion, I will get out of bed and start another day, keeping the mission moving.  24 hours goes by slowly and painfully but in the end, it’s still just 24 hours.

I can do this.

********************

Sydney, 13 year old, wishes to visit the Harry Potter museum in London.

Let’s Become a WishMaker Together in Honor of Isabella’s Birthday

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.  

There is a girl fighting cancer, Sydney, who is 13 years old and wishes to visit the Harry Potter museum in London. We can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday.

Please donate to help make Sydney’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal by March 31.

DONATE HERE

*Donations made to this campaign are a gift to the mission of Make-A-Wish. Each contribution will be pooled with other gifts to grant the wish of the child shown above or of other eligible children. Costs shown are estimates. All wishes listed will be granted.

Kicking Out Cancer

Sometimes we come across a young adult that stops us in our tracks. And reminds us of how incredibly amazing kids are. This time it was Matthew Pennington who stopped us and made our hearts smile.

Matthew Pennington took part in Leadership Martial Arts’ Kicking Out Cancer event yesterday. The event raised a total of $5,200 benefiting ISF! Matthew won for most money raised and was presented with a autographed Carolina Panthers football. Matthew immediately donated the football back to ISF for us to use in our auction to raise more money. Gestures like these always gets us, especially when they come from kids. We learned that when Matthew was 10 years old, he lost his father to cancer. He started going to Leadership Martial Arts as a positive outlet after loosing his father. We love that he turned his pain into passion.

This is giving back. This is making a difference.

Grace donated her birthday money, she didn’t want other kids getting as sick as Isabella. Jackson joined Isabella’s Dream Team at 11 years old as the youngest member to help fund raise. Griffin, Riley, and Noah redeemed 5 year’s worth of arcade tickets for a Yeti cooler just to donate it back to our annual auction. Juliana wears purple every September in honor of Isabella, helping her high school every single year with their annual ‘Purple Out’. Blake saved every penny of her summer earnings at 7 years old to help ISF. We could go on and on about the incredible kids we have come across. And they all have reminded us of Isabella… who used to donate her birthday presents to the pediatric oncology clinic. Kids amaze us.

Giving back is important on all levels. All ages. Thank you Matthew for your passion. We were honored to spend the day with you yesterday.

Lake Norman Gives Back

Our Lake Norman Cocktails For A Cure event on March 2nd is almost full!  Don’t miss out on this ‘Night of Hope’ to learn about the impact that The Isabella Santos Foundation is making in our community.  A fun night out with cocktails, food and entertainment by Joshua Moyer, paired with giving makes for the perfect  ‘feel-good’ date night.  We will have a beautiful piece of jewelry donated by Diamonds Direct to raffle off and in lieu of purchasing a ticket, we request that you please bring a favorite bottle of wine to donate to a wine pull.

If your in the Lake Norman area, stop by Circa 1873 at On the Nines Bistro for their Week of Giving leading up to the event.  From the dates 2/24 – 3/2, On the Nines Bistro will donate 5% of proceeds back to ISF.

To attend is free, but seating is almost full, please sign up here to reserve your seat today.   Please contact info@isabellasantosfoundation.org with questions.

Thank you to our generous sponsors:  Tri at the Trump, Modern Nissan of Lake Norman, Redfin