Tag Archive for: charlotte childhood cancer foundation

ISF 2017 $1 Million Goal Hit!

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$1,000,000 was our 2017 fundraising goal. $1,025,467 was raised! We are beside ourselves with excitement and extremely grateful for your support. Thank you to our volunteers and employees that work tirelessly towards our foundation mission.

We set a very specific objective behind our 2017 goal… bringing a MIBG room to Levine Children’s Hospital. This new-state-of-the-art MIBG room will help families with kids facing cancer.  Charlotte will be one out of 20 hospitals in the country that will be able to offer this to patients. We are excited to see ground break in March in honor of Isabella’s birthday and look forward to sharing more specific developments as this new pediatric cancer treatment room and program developments.

ISF helped  fund the Frontline MIBG Therapy project trial through the Children’s Oncology Group (COG) last year. 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 late 2018 where an MIBG room is available.  It is very exciting that Levine Children’s Hospital will be able to offer this advanced therapy.

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.

New Year, New Look, New Life

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Written by Erin Santos, Isabella’s Mommy

January 1st, 2018 just seems unreal.  What seems more unreal is 10 years of ISF behind us.  We started out that first year when Isabella was diagnosed and raised $7,000.  Our 2017 books are closing and we hit the goal we had in place of 1 million dollars raised.  Unbelievable.  It makes me wonder where this little “project” of ours is going to go.  With an even bigger goal in 2018, as well as a new treatment room in construction, in her name, opening its doors later this year, I know there is so much more ahead of us to accomplish.

With growth, comes change… some good and some bad.  Isabella will always be the true Founder of this organization and her face will forever be tied to all we are doing.  However, as a growing foundation, we have realized that giving in her honor the last couple of years has propelled us to success we never would have imagined.  But now, we want to refocus our organization on the children we are trying to save today.  I have always said there is an Isabella in every city.  And as we expand into new cities and markets, it is becoming painfully obvious that there are children everywhere who are in the fight of their lives.  We want to start introducing you to these children, their families and their stories.  They need your help to fight this disease that still has a survivor rate that would break any parent’s heart.  We also want to start educating our supporters on other rare cancers that can benefit from the treatments we are funding.  Neuroblastoma is scary, but there are other cancers out there with ineffective treatments and without organizations like ours in their corner, kids have very little chance for a cure.  Every child’s life is worth saving and we want to spread our wings a little more with your help.

I’m excited about the upcoming changes in our focus because even I need to put my memories of Isabella in a safe place.  For years I told myself that we were different.  We could handle loss and turn this horrible tragedy into something that could potentially change the lives of others.  While we are doing this, unfortunately, it came at a price.  Death changes people and we are not exempt from this.

I always look back at the person I was before cancer, during cancer, and even during her death.  I’ve referred to it as a movie I watch because that person seems unrecognizable to me now.  Her death has made me independent and strong, focused and determined.  But it has also made me closed off and cold at times.  I can be a hard person to get to know because her death has built a fortress around me.  I find solace in being alone, my anxiety can take me over completely and I find at times that I want to run from everything.  While losing a child makes you realize how important every minute is with your other children, sometimes it comes at a price to others in your life.

I don’t know why we hurt the ones we love the most.  We just do.  And sometimes we can’t stop doing it.  Death changed me a lot, and it changed Stuart too.  The person you once went to battle with becomes the new battle.  You find yourself just trying to get through the day and the other person becomes the casualty of this.   One thing remained consistent through our grief, our love for her, our kids and all that ISF is accomplishing.  But, I think we have just hit a time in our life when we want to find happiness again, and sometimes that happiness isn’t together.

While I feel like this is a very personal subject, I have never shied away from my life being an open book.  I felt like it was important to let the supporters of ISF know that nothing is changing with ISF.  Even though Stuart and I are no longer together, we still stand together and will do everything we can to continue to grow the foundation and make a difference in her name.  I love when we are together at an event and people say to me, “You would never know about the changes behind the scenes in your family.  You guys seem stronger than ever.”   Maybe because the love that kept her alive for so long will always be there for each other because we know the other one has been to hell and back.  There is too much history to be any other way.  So that is all you will see.  We will always be together for her.

We hope these changes will not impact the support for all we are doing together.  My belief is this is just a new start to a big year ahead and we are so proud of what we have accomplished.  This is just the beginning… maybe just a new beginning.

I HOPE…

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There are so many things we HOPE for.  This poem (author unknown) sums up all our HOPES and the reasons we continue to fight pediatric cancer.  We posted this poem earlier in the year and not only did it become our most popular post of 2017, but of all time.  As we wrap up our 10th year of the foundation, we thank you for fighting with us, for supporting us, for crying with us, for believing in us…. and most of all for helping us continue to keep Isabella’s legacy alive as we fight childhood cancer.  It started with a girl… and she is changing the world!

We hope you and your family have a wonderful (and safe) New Years Eve and look forward to conquering our HOPES together in 2018.

Isabella after brain surgery

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chem

otherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

(author unknown)

Grief Shocks…

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It will hit you like a rock – how so very MUCH you miss someone, your breath catches, your tears flow, and the sadness can be so great that it’s physically painful. Like the wind knocked the air out of you. The aftershocks of losing someone, even if it’s been five years… the grief shocks.

The loss of a child is a grief that lasts forever. Grief comes on in waves, especially during holidays, anniversaries, and birthdays. There will always be another year older that she should have been, her handmade ornaments will always be placed on the Christmas tree by someone other than herself, and the empty chair at the holiday dinner table will never be filled.

Isabella in Chistmas Jammies

Last week we ran into Mrs. Chrissy at lunch. As many of you know, Chrissy was Isabella’s best friend. Yes, Chrissy is an an adult… but if Isabella wasn’t with her parents or grandmother, she was with Mrs. Chrissy. They did it all together. We exchanged small talk before deciding to all sit down over lunch to catch up. Immediately her lip started quivering and her eyes teared up. She started to explain that she has been doing so well until this past week… she is tripping all over Isabella. Memories hurt, especially during this holiday time. Memories that are causing grief shocks.

“I laid in bed and decided to pull out my Sudoku book, it’s been years since I have brought myself to play. I open up the book and who was the last person to work on a Sudoku puzzle? Isabella. Its like she is making sure I don’t forget her.”

Isabella, Grant and Sophia in Christmas Jammies

Isabella was Chrissy’s shopping partner. Especially during the holidays. Chrissy even bought Isabella a Hanukkah outfit, just an excuse to buy her a pretty dress. Pictured here is Isabella with Grant and Sophia… in Christmas pjs that Chrissy bought them. Chrissy went on to mention that she still hasn’t been able to put up a Christmas Tree in her house since Isabella died. She continues to tend to her memorial site at Calvary Church and took Isabella a Christmas Tree instead.

Grief looks so different on everyone. No grief is right and no grief is wrong. And no amount of time, even if it has been five years, will change the way one feels. Our hearts go out to all those grieving and tripping over their lossed loved ones this holiday season. We hope your grief shocks become a little less intense and you can breathe in the moment of the season.

Give a tax deductible contribution in honor of someone special who is currently fighting cancer or in remembrance of a loved one who lost their battle. It’s a form of action and beautiful memory.

DONATE: isabellasantosfoundation.org/donate-to-isf/

(Remember that many companies will match your contribution. A great way to increase your impact.)

Healing Comes In Many Forms

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Isabella’s mom and Dr. Kaplan

It’s understandable that a mom would fall in love with the doctor who is trying to save their child’s life right? For years, Isabella’s mommy put their pediatric oncologist, Dr. Kaplan, on a pedestal. She remembers exactly what he was wearing the day she met him and could barely be in the room without sweating through her shirt due to nerves. They had a budding cancer romance.

 
“Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.”
 
Pictured here is Isabella’s mom with Dr. Kaplan at the Levine Children’s Hospital holiday party last night. Through this picture alone you can see that healing comes in so many different forms. For this cancer mom, she can endure conversations with her ‘oncologist boyfriend’ without anxiety attacks and can laugh over the romance she thought once was… and she can reminisce about Isabella.
 
Read more in the below blog article that Isabella’s mom wrote over 2 years ago detailing her cancer romance with Dr. Kaplan…

WHY I LOVED HIM (written by Erin Santos, Sept 4, 2015)

I have loved people in my life for a number of reasons. But this love was different than anything I have ever experienced. This love was built out of trust, admiration and hope for saving my child. You would hope that love should flow both ways and for the first time in my life, it didn’t – and I didn’t care.

October 4, 2007, he came into the room and introduced himself. He was 5’9, brown hair and glasses. He wore khaki pants with a rope belt that secured his pants that didn’t fit properly. A green shirt and tie that looked like the type you bought together in a box. His hand extends, “Hi, I will be your daughter’s oncologist. I’m so sorry about the news you received today.” This is the standard greeting they learned to give us during this time of sorrow.

As her treatment started, we saw him regularly. Every time we would come in, he would be waiting on us. “Hi honey,” he would say to her as he placed her hand on her back. I always got a firm handshake and a smile, very serious business. Isabella slowly let down her guard with him and started to feel comforted by his presence.

The days tuned into weeks that turned into months. But through this journey, I was starting to think he had been in our lives forever. He always knew just what to do and when to do it. I trusted him and more importantly, she trusted him. This was the man that was going to save her.

Isabella began to see him as family. She would spend time drawing pictures for him or do craft projects that she would set aside to bring up to the clinic to leave on his desk. My favorite is the picture she drew of the three of us holding hands, some weird new family we had developed into. She began to feel a level of peace with him and she knew he wouldn’t hurt her, if anything… he would make her feel better. We were a team the three of us and I could tell she adored him.

I began to trust no one or no treatment plan unless he was behind it. New York would pass down instructions of what we were to do. None of it would start until I talked to him and had his blessing. “Do you think this is the right thing to do? What would you do if you were me? How do you think the cancer will react?” I was grasping for his approval and sign-off at every turn. I engulfed myself in learning every piece of her treatment plan and could rattle off blood count numbers or medicine doses without even thinking about it. I yearned for him to know that I was knowledgeable about what was happening because in my mind I told myself that it would somehow give us an edge.

I even changed my appearance in a way that showed that I was “put together”. I’m not one of those moms who sulked around in sweatpants with no make up on. I was in better than those moms. I had my shit together. When he would come on rounds, I found myself being nervous or posing when he was in the room to seem unnerved by him or what he was telling me. I wanted him to trust the decisions that I was making just as much as I trusted his. I wanted him to think that I was more than capable to act when it came to her care than these other moms.

After years of working side by side in her journey, I started to know his footsteps coming down the hall. She and I could feel his presence before he even arrived. And I began to know the look on his face or the tone in his voice that would tell me that we were safe or we were in trouble before the news even hit.

Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.

When we reached the point of making the hard decisions, I felt that he and I would come up with a plan on what was best for her. He and I were determining her fate. My husband who left the primary care up to me would often get second hand knowledge of the plan that he and I already determined. It would be positioned in a way that always made him feel that he was a part of the decision. But I know that our decision had been made earlier in the day between the two of us.
I always knew in the back of my head at some point that she was going to die. People would tell me that she is going to be the one to beat it. But, I knew that she wasn’t. It was just a matter of time and options, and our options were running out. I couldn’t imagine what the dying process was going to be like for her. I just knew that we would somehow all figure it out together. He would walk along side our family, holding her hand across this invisible line, making sure that it ended with him just as it began. But, as always in cancer – things never happen the way you want them to.

The call we got from him in June 2012 that revealed the cancer had spread to her bones was the last time I spoke with him before she died. Due to unforeseen family circumstances, he was not available to us the last month of her life. We received no call, no card in the mail. I couldn’t understand him not being a part of this process in the end. This was his child too and she had fallen through the cracks and was dying without him.

The next time I saw him was at her funeral. I saw him out of the corner of my eye shaking my husband’s hand. I wondered what typical doctor response he was giving him that he learned after all these years of losing children.
I waited for him to come over to me. I felt sweat start to form out of every pore on my body. What would he say to me? I wanted to hug him and sob over our failure and have him reassure that we tried everything we could possibly do together to save her.

Instead, he shook my hand. “I’m so sorry for your loss.”

And in that moment I realized. The love I had for this man was one-sided. She wasn’t his child that he was trying to save alongside me. She was his patient. I was her Mother. He is a doctor and this is the business he is in. His handshake was firm, but it told me everything I needed to know. I tell myself that it would be completely unprofessional for him to hug me and cry. All the years of mentoring in his position must of told him to compartmentalize these situations or you will go down in the flames of depression each time you lose a child. But, I swore that she wasn’t just a child to him, she was different.

I couldn’t see him for a couple of years without going into a full-blown anxiety attack. I could feel tears forming and my stomach would be sick when I saw him coming over. It was unfair of me to put him on that pedestal if he were the God that was going to save her. I always craved that conversation that I wanted in the end. But that conversation never came… and I finally began to see him for who he really was…just her doctor.

-Isabella’s mommy