Tag Archive for: neuroblastoma research

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.

Ports, bald head and scars…

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“This picture that was taken of Isabella always makes me smile. We had just moved back to Charlotte from New York City in the fall after a brain relapse that sent us into a tailspin. The mass on her brain forced emergency surgery, followed by a chemo and radiation regiment that meant moving our whole family for 4 months to the city. If you look closely, you will see the port that was placed just under her skin on top of her head. This port was connected to veins in her central nervous system so a drug called 8H9 could bathe her entire brain and spinal cord with a life saving treatment. (This 8H9 drug developed by Dr. Kim Kramer at Memorial Sloan Kettering Cancer Center has since received national recognition as one of leading new drugs for relapsed neuroblastoma.) In this picture Isabella has yet to receive her first dose of 8H9, but the relapse that once frightened us to our core had 4 months of treatment under its belt and was doing amazingly well. This port would be used in just a couple of months while Isabella was in remission to kill any microscopic cells that may still remain. I was there for a test treatment and was blown away as she calmly sat in her hospital bed while Dr. Kramer inserted a needle into the port and sent fluid through her CNS to ensure the port was working correctly. She looked at me with wide eyes as I sat next to her holding her hand. After 15 minutes of treatment, the needle was removed and she went about playing per usual as if nothing had happened. She would receive 3 of these treatments in the next couple of months but we decided as a family to remove me from the treatment due to possible radiation exposure. My Mom of course stepped in exposed herself, selfless as always. We wanted to have another baby and felt like it was safer for me to be away. I got pregnant that January.
 
That little port never bothered her as you can tell from this smile. As a parent your eye always caught it, but you knew it was imperative to her survival. The port stayed with her the rest of her life. I always wished they had taken it out, but like her bald head and scars… it just became part of who she was. We took her lead and just became happy to have every day with her – who cared about that port? She sure didn’t.” -Isabella’s Mommy
 
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He wasn’t there in the beginning or the end…

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Written by Erin Santos, Isabella’s Mommy

It’s been a long 5 years but relationships are growing and changing at Levine Children’s Hospital.  I’ve gone from admiration and love, to fear and anxiety and then back again with these doctors.  The walls and people that once crippled me upon entering after Isabella’s death have become a second home to me.  I know I can joke a lot about how a large donation commitment can buy you a hospital friendship, but it’s become much more than that.  I feel like I have become so much stronger around them.  Just a few years ago, I could barely stand without my knees buckling when I knew Dr. Kaplan was going to be at an ISF event.  Then, this past July – I find myself in the oncology clinic helping give gifts to the kids for our Christmas in July event.  I feel  him coming down the hall before I even see him, just like it used to be –  and my heart still stops for a minute.  We exchange pleasantries and hugs – like you do with an old boyfriend who you run into at a Starbucks years later.  It’s uncomfortable because there was history… but it’s becoming more comfortable because there IS history.  Not sure if I can ever feel totally comfortable around him – but I’m trying really hard.

Luckily, my new contact at Levine isn’t my old boyfriend Dr. Kaplan  🙂  As I sat in the “Green Room” of the NBC Charlotte news studio this week for over an hour with Dr. Javier Osterheld (one of Isabella’s past oncologists), I found myself comfortable and enjoying the company. We were together to talk on air about the MIBG treatment room ISF is funding at Levine’s.  We talked about all things cancer, the hospital, family, beer and other things that might be tad inappropriate.  I found myself laughing and enjoying the company of a man who I wasn’t the biggest fan of several years ago.  Cancer can make you love and hate people all in the same week.  He is easier for me because we don’t have the 5 year history that I had with Kaplan.  He wasn’t there in the beginning or the end.

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We talked about his training with Isabella’s Dream Team and I asked him how many half-marathons he had done in the past.  His answer… “This is my first.  And I’m doing it for you and Isabella.”  Maybe he was bullied into doing it at first, but maybe he’s just really an amazing guy and we lose that vision of these doctors when they give us horrible news about our children.  It brought me back to my ‘Why I loved Him’ blog post  about how you go through these feelings of total admiration for these people because your child’s life is in their hands.  You put this God-like complex on them and they don’t ask for that.  In the end, they really are just normal people who like you have jobs they love and are just trying to save the life of kids.  But they are also people who drink beer, and make fun of themselves and laugh and cuss… just like you.
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I find that through Isabella’s death, new things come to life, like friendships with people you once hated that were really only trying to save her.  I can see them all more clearly now – and they are all amazing people.

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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.

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