Tag Archive for: charlotte children’s charity

It Started With A Girl…

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New year. New look.  With 10 years behind us, we made the decision to start the new year with an updated look.  We have so many new things on the horizon, we felt like our Isabella logo needed to evolve again as the foundation grows.

You probably have noticed that we take every detail into consideration here at ISF.  We like purple… we like to make sure our mark in on everything and no bow goes untied.  Our ISF girl logo is no different.

When the foundation was created, our stick logo was created based on Isabella.  Very innocent and child like.  Because of Isabella’s physical limitations, art became her safe place.  Isabella would spend hours drawing and coloring.  She would draw pictures for everyone and it became her way of saying thank you.  What started as a stick figure little girl that Isabella could easily draw and color, became something else.  It became her legacy.

Several years ago, Isabella’s stick figure logo evolved into the girl on the world.  After all, that is how we all saw Isabella.  We saw that the world was at her fingertips and no matter what happened to her, she was going to conquer anything.  It started with a girl….

This logo has moved and shaped into a life of it’s own.  We love to spot our Isabella logo around the community and on the walls in the hospitals or organizations we work hard to impact.  We love that Isabella lives on through her own art stamp and that we see her in the kids we are hoping to help. She is changing the world.

What do you think of our updated Isabella logo?

Taking each day for what it is…

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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.

Taking each day for what it is…

Isabella and Grant

“The majority of my days are spent in the bed with Isabella.  I try to lay with her in the morning until around 4 each day.  We don’t do much in the bed.  Occasional meds, back rubs, small conversation.  I’ll get her up and put her in the bath with me to make sure she at least feels clean every day.  But with each bath, I look at this girl and can barely see my Isabella in there.  Her stomach is sunken, ribs showing every bone.  Her shoulder stick out like they want to punch through the skin and her spine shows each vertebrae.  I can no longer carry her with my hand on her back because it just upsets me too much.  Her pain comes and goes and when it comes, it seems harder to get on top of.  We have increased her pain patch and the nurses are coming out tomorrow to show me how to push meds through her line.  I think it’s my last step in becoming a full nurse for her.  It’s what I want though.  I feel like I want zero help from the medical profession going forward.  It just is too personal to me at this point so I’m starting to even close them out.  I know I am driving them crazy but they deal with me the best they can.  I know they mean well.. but it’s just hard.  We have days where the pain is so intense that she starts vomiting over and over.  We wonder if things will start to turn for the worse, then the next day is quiet and she sleeps all day.  One night this week she started to become disoriented and had trouble speaking.. but then cuddled up and slept through the night.  It’s hard because we come to peace with things and what is going to happen, and then she walks downstairs and eats a bowl of ravioli.  But just as quickly as she appears, she disappears yet again.  Her counts are sky high so we aren’t needing transfusions.. which is odd because we were told to expect transfusions because the neuroblastoma and radiation will start to knock them down considerably..  But that is not happening.  We think she will only make it a couple of days and then a week goes by.  A horrible night followed by a day up and chatting with me about how my birthday gifts for daddy are “not fun” and she wants to get him something fun so we search the Internet together. Really???  I honestly don’t know what in the hell we are doing.  Stuart is trying to stay busy with work or the house, Grant is in camp, Mom is entertaining Phia, Stuart’s Dad is helping him with whatever is bothering Stuart and Katherine is organizing my pantry.  It’s honestly a very weird house right now.  But, we are just taking each day for what it is.. another day with Isabella.

While we are all trying to come to peace with things, Grant is beginning to struggle.  He is having moments of tears that come from just seeing a picture of them together.  Nightmares, night sweats and the constant need to be right next to me, let me know that he is grieving.  He misses her.  He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”.  Even today he came in and sat next to the tub while Isabella and I took a bath.  Just talking about whatever came in his head.. but it just felt normal to him for a minute.  They talk as if nothing is going on.. he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book.. whatever.  He just wants to be there.  I’m amazed he doesn’t mention the look of the body he sees in the water.. he notices it I’m sure.  I know the key will be keeping him active when this process comes to an end.  I’m looking forward to giving him the attention he deserves and getting to connect with him again.  Right now the kids get me in doses of when I’m downstairs for a bit.  They light up when they see me like it’s been weeks since I was there.   I sit on the couch with Grant and Sophia and they both take my arms and wrap them around their bodies.  It feels wonderful.”  – Isabella’s Mommy, June 21, 2012

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

I didn’t want to forget…

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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.

Miss Chrissy and Isabella

I didn’t want to forget…

“June is a hard month.  I couldn’t imagine what it’s like for Erin and Stuart, but it is certainly a hard month for me.  I think back on all the little things that I used to run around town doing with Isabella.  Silly things really.  But things that we did over and over, at places we considered our stomping grounds that made us both happy.

Red Lobster, I won’t go back.  This was Isabella’s all time favorite restaurant.  But I can’t find it in myself to step foot in a Red Lobster.  Janie and Jack, I won’t step foot in that store.  Isabella was very finicky with what she wore and the shoes she chose.  Boy did we make a good shopping team.  But I can’t find it in myself to step foot in a Janie and Jack or look that way when in the mall.  Genghis Grill, I won’t visit that restaurant ever again.  Isabella loved the little corn on the cobs and I laugh every time that I think of those darn things.  But I can’t find it in myself to eat at Genghis Grill. And after most food stops or shopping trips, we would pick up something chocolate.  Isabella loved chocolate.  Decadent and rich… something that only an adult size man could eat.  But she would eat every single bite, drink a large glass of milk, and laugh the whole time.  She knew that milk grossed me out and loved every second of it.

I can’t visit our old stomping grounds, but I keep her close to my heart at home in different ways.  Isabella’s art is hung up in my kitchen facing the microwave.  She would cook pop corn every time she came to my house.  I thought this was the most perfect spot, another memory of something we would do together.  I don’t notice it every day… but when I do it certainly stops me and makes me smile about all the times I had with her.

I try to go to her gravesite every couple of weeks.  I want to make sure all the weeds are pulled, all the dead flowers are removed and fresh ones are put in their place.  I never want Erin or Stuart to visit and see things that would hinder them from feeling her spirt.  And others visiting other graves…. I want everyone to know how special this girl is and the mark she is making.

And in the end the one thing I remember the most… I just didn’t want to forget.  I would rub her arm and her head (I loved that bald head) over and over as we cuddled.  I had to force myself to remember what she felt like.  I didn’t want to forget.”

– Miss Chrissy, Isabella’s best friend & family friend

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

How unfair her life has been, but how beautiful it has been as well…

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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.

How unfair her life has been, but how beautiful it has been as well…

“But as I laid her in my bed tonight, I knew that hospice was right.  She is trying for the last time to live.. but her body will soon lose the fight.  I feel like I’m coming to peace a bit with the fact that we are going to lose her soon.  The community of people supporting us doubles daily and her reach is growing nationwide.  It seems fitting for her as Isabella always thought that she was a celebrity her whole life, but just wasn’t sure why.  That point was made very clear today when my phone rang with a blocked number.. Taylor Swift​ was on the other side of my phone and she had heard of Isabella and her fight.  Isabella is a huge fan of hers and a month ago, she would of screamed bloody murder to hear her on the other side of the phone.  But, this disease is taking all the of things about Isabella that made her so wonderful.  It was all she could handle to just lay on the couch and listen to this woman she loves speak to her through the phone.  She could barely speak, she just looked at the phone with one eye closed as if she was trying to see Taylor in the phone somehow.  If you could of seen Isabella at her concert a couple of months ago, it would take your breathe away to see her now.  How just a couple of months and a horrible disease can steal more and more things from her every day.  Makes me so sad to see it.  Even the revolving door of loved ones who leave and I know they are thinking it is the last time they will ever see her.  This is my day.. my heartbreak, Isabella’s heartbreak, and heartbreak from everyone we come in contact with.  I can only think that through her life, so many are changed that it will make the difference.. maybe even save another child’s life.  Isn’t that what we all want?  Our life sacrifice. knowing it can save someone else’s?  That is an amazing gift.  One death for the sake of millions?  I know that is what Isabella would want in the end.  To know that because of her, another little girl will not have to miss her last day of kindergarten.  I selfishly wish that my daughter was the one being sparred.  That her last day of kindergarten tomorrow would be filled with laughing and running and playing.  Instead we head to the clinic for a full day of blood and platelets.  Another memory, stolen.  How unfair her life has been, but how beautiful it has been as well.”  -Isabella’s Mommy (June 7, 2012)

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

Why $1,000,000?

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WHY THE $1,000,000 GOAL THIS YEAR? We have gotten this question several times. One simple fact… to bring the leading pediatric cancer treatments to local children in our surrounding communities. We have committed to fund the creation of a MIBG room at Levine Children’s Hospital​ and anticipate breaking ground in 2018.

WHAT DOES THIS MEAN? In just one year, our local children will not only benefit from the new MIBG room, but also trials involving MIBG therapy. With your 2017 donations, ISF was able to fund the Frontline MIBG Therapy project trial through the Children’s Oncology Group (COG). This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. It will be ready for children across the country in August 2018 where an MIBG room is available. Guess who will have an MIBG room? 🙂

WHAT IS MIBG? A cutting edge, targeted therapy used to treat relapsed or high-risk neuroblastoma with little to no pain and side effects. This treatment requires a highly specialized team to deliver the therapy and a special room to assure that patients, family, and health care providers are safe.

WHY IS BUILDING A ROOM SO EXPENSIVE? The room is specifically designed for this type of therapy and is created with lead shielding due to the radioactive nature of the treatment. These lead walls provide the highest level of protection for patients and families. The MIBG room will have an adjoining suite so the patient will always be close to their family.

 
DONATE TODAY TO HELP US GET TO $1,000,000