Tag Archive for: neuroblastoma foundation
ISF 2017 $1 Million Goal Hit!
$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
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.
Grief Shocks…
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.)
