Tag Archive for: neuroblastoma

MIBG Construction Update #5, Levine Children’s Hospital

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MIBG Therapy Room, Patient/parent room dividing lead brick wall with ISF signed brick

25,000 lbs of lead bricks… that’s a whole lot of lead. But that is the necessary requirements to protect and manage MIBG Therapy safely for patients, family and staff.  Construction of the ISF MIBG Treatment Suite at Levine Children’s Hospital is progressing on schedule.  We got another peak at the room and how far it has come since we were there in early July and got to talk with MIBG Therapy Program Lead, Dawn, about her MIBG training and mock trial plans once construction wraps up. We are getting close!

10,000 pounds of lead brick has been installed in the adjoining wall between the patient and parent room.  Back in March when we announced the Therapy Suite, many of our 3 Wish Circle Members and sponsors signed a lead brick to commemorate the significance of their part in bringing this type of therapy to our region.  What was also special, doctors and nurses who treated Isabella during her time at Levine Children’s Hospital were in attendance and signed the brick.  We were excited to see where the ISF signed lead brick will be placed in the patient/parent room dividing wall (white brick in photo)… drywall goes up next week and it will become a lasting print in Levine History!

UPDATE:

  • Patient & parent bathroom framing
  • Plumbing install
  • ISF signed lead brick placement
  • Drywall starts next week

MIBG CONSTRUCTION UPDATES & PROGRESS PHOTOS

Over $21,000 has been raised by our ISF MIBG Ambassadors.  Want to be part of providing comfortable care for the kids/families that go through MIBG Treatment?  Our new MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}

MIBG Therapy Room, Patient bathroom framing

MIBG Therapy Room, ISF signed lead brick

 

 

MIBG Therapy Room, ISF signed lead brick. Dawn Bartock & Rachel Wood

MIBG Therapy Room, Patient lead brick wall

MIBG Therapy Room, entrance to patient room. Parent door to the left

She Left Us Before 10

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Cancer Stole My Sister

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Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

– Grant Santos, Isabella’s Brother

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It started with a girl. And she is changing the world. June 28th will mark the 6th anniversary of Isabella’s passing. Please help us near and far keep Isabella’s legacy alive.
 
– Make a donation: donateisf.org
– Participate in our Sept 5K/10K: 5kforkidscancer.com
– Sign up as a MIBG Ambassador: https://bit.ly/2MsUQdm
– Sign up for Isabella’s Dream team: https://bit.ly/2smlhqh
– Participate in our CBCC platelet drive June 21-28: https://bit.ly/2sVjafX

The Sound of a Train at Night

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Written by Erin Santos, Isabella’s Mom

It’s June.  Let’s just acknowledge it.  

Different months mean different things to us here at ISF.  Some months mean big events – and even bigger anxiety – like our September race or our spring coffees.  Other months are spent answering emails, scheduling meetings, honoring appearances, or trying to navigate the demands of the foundation. June is always different, though,  because we never really know what this month will bring.

For me, June always begins as a crazy whirlwind of  “Oh God, it’s the end of school”, as I frantically try to present myself as Mom of the Year until the day the kids exit the bus for the last time.  This particular June has been abnormally crazy, with the addition of a desperate search for Jake, Isabella’s cat who left one night after a work meeting at my house.  Jake – an inside/outside cat who loves to party at night – would always be waiting at the back door each morning to come in for cuddles. Three weeks ago, he went to party and never came back.  We are all in denial that he is gone. His food bowl is still sitting out in our house, full. The kids are devastated and I’m blocking out all the emotion that comes with how we got this cat, what this cat meant to her, and what this stupid cat means to me.  Sophia says he is finally with Isabella again but I just laugh it off because I can’t wrap my head around that.

Last week, I found myself in Mom of the Year mode again and took my kids to a Knight’s Game uptown mid-week. Grant was so exhausted, he completely fell asleep on me for an hour at the ballpark and I realized instantly that I overbooked us. As I drove us home later in the dark, I decided to take a better exit with more lighting.  Then it happened… we were hit from behind and smashed into a 5-car pile up. Surprisingly, we all walked away from a totaled car without a scratch on us. The truck that hit us from behind practically came through my backseat where Sophia was sitting. But other than a weeklong headache and a car that was being sold for parts – it was as if it never happened.  Grant graduated elementary school the next morning and I sat there, not allowing myself to think how different that morning could have been if we hadn’t been wearing seatbelts or if the teenager hit us at a different angle. In traditional Erin fashion, I pushed all those thoughts aside. It’s just another crazy June, just another thing.   

But there have also been things that have happened that I can’t push aside. A few nights ago was no exception.  I was asleep in a dark room when I heard it – the sound of a train passing closely by. I’ve heard this noise many times before. Generally, it just startles the shit out of me before I fall back asleep.  But this time the sound instantly conjured up a hundred images in my mind as if I’m living in a movie. And it suddenly launched me back to 6 years ago. Into a pitch-dark room. With her.

We were at the Grand Floridian because Mom of the Year thought it was smart to take a severely sick, dying child to Disney World.  She was skin and bones at this point and was losing her vision due to the brain tumor. So each day as our group headed out to take Grant and Sophia to the parks, I would pull the dark shades and crawl in bed next to her.  The hotel was silent because everyone was where they were supposed to be… out enjoying themselves and the sunshine. But she and I would just lie there, silently breathing together. The only sound we would hear was the monorail train coming in and out of Magic Kingdom every 15 minutes.  The room was so dark we couldn’t see each other but I could feel her against me. I would never sleep because I was too busy taking all of her in. Every breath, every twitch, every single train that would come and go. Hours would pass and I would just cry silently – trying hard not to wake her.   And just when I would feel my mind becoming tired enough to sleep, the train would come.

Ever since that June night just a few sleeps ago, the one that brought back Disney, I realized something different is happening. I’m remembering more. I don’t think it’s that I necessarily want to, but somehow these thoughts are elbowing their way in . Maybe it’s because I’m home alone and my mind has time.  Maybe it’s the combination of the cat, or the the car accident, and the silence in the house. All I know is that this stupid train has me thinking again and it’s tough. How can one sound do that to you? One simple, normal sound.

Since I’m finding I can’t push these thoughts aside, the only decision I can make is to take it all in over the next two weeks. To allow this train to throw me into memories I don’t want to have. Unless I somehow muster up the strength to realize it’s just a train. And move on.

Welcome to my June.

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It started with a girl.  And she is changing the world.  June 28th will mark the 6th anniversary of Isabella’s passing.  Please help us near and far keep Isabella’s legacy alive.  

MIBG Treatment Room Construction Begins at Levine Children’s Hospital

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How satisfying is it to see your $1 MILLION worth in donations at work? To be able to touch and see the impact your dollars have on kids with cancer is immeasurable. Dawn (MIBG Therapy Program Director) and Lindsay (MIBG Head RN) stopped by the Levine Children’s Hospital ISF MIBG construction site to view the first steps of construction. Demo of the current hospital rooms where the MIBG treatment area will reside are underway, with the heavy demo starting today. We look forward to sharing progress photos and watching your impact unfold.

Levine Children’s Hospital will be 1 of 20 hospitals to have a MIBG Treatment room in the U.S. The two-room MIBG suite will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects. This will impact kids fighting cancer beyond the greater Charlotte region. Continue reading about the ISF MIBG room.

We are looking for individuals who want to be part of providing comfortable care for the kids/families that go through MIBG Treatment. Our new MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}