Tag Archive for: rare childhood cancer

Charlotte now has a new way to treat rare cancers

 

Levine Children’s has a new way to treat rare cancers.  In December, they opened the Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s Hospital – one of only a handful in the United States.

Alexandra (center) is the first patient to receive MIBG treatment in the new The Isabella Santos Foundation MIBG therapy suite at Levine Children’s Hospital. She has neuroblastoma and has relapsed 10 times. Alexandra’s first treatment went well, and she thought it was “so cool” to be the first patient, making history and paving the way for others.

I’m ready to be somebody other than just her mom

Written by Erin Santos, ISF Executive Director & President

Erin, Grant & Sophia

We are moving.  Hoping to have the house on the market April 1st and in a new home between SouthPark and Uptown the day after the kids finish school.  I’m so excited I can barely stand it. This house that was once purchased 8 years ago was for a family I no longer recognize.  A husband and wife, 3 kids and dog and a cat has now dropped to a Mom and 2 kids. The house is huge (which I know is inappropriate to say) but we needed it when Isabella was fighting cancer.  My Mom was living with us on and off and with a revolving door of help – we used every inch of the home. The kids played in the yard because we needed to keep Isabella close and Bailey and Jake roamed free alongside them.  The Marvin school system was our backbone for support with an amazing free education and my neighbors became my extended family.

But 6 years after she has passed, a divorce, a dog that passed away and a cat that one day left and never came back – this house is a graveyard of my past life.  I have no idea how to fix things in the house (although I’m learning) and an acre of yard that the kids no longer play in has me dumbfounded on seeding, aerating, lime and who knows what else.  Other than Sophia’s best friend next door – we keep to ourselves and find our inner circle is completely new. In fact, the majority of people close to me have never met Isabella and sometimes one step removed friends don’t even know I have a child that passed until I throw it out on the table.  I need a change badly.

I have been going about this change fairly mechanical.  Any free time I get is spent devoting my time to a room, a closet, a drawer.  There are very few items in my house that mean much to me at this point. My goal is minimal living, kill all these toys the kids don’t play with and trinkets that junk up my life.   I’m plowing through each area with very little emotion. We had done a few passes on Isabella so luckily I’m not tripping over her in every drawer, which helps. I’m throwing everything away.  Tubs that have crap in them that I haven’t even looked in – the entire tub goes in the trash. If we haven’t used this in the last 60 days – it’s gone. Goodwill is making out like a bandit and my trash screams of a purge. 

Grant has been okay with the process.  He’s a lot like me with very little attachment to stuff these days.  Other than his Beats headphones, his phone and some items he likes to sleep with – the rest of it can go.  He is stuck in a little boy’s room and the promise of a new room is enticing to him.

Sophia would keep a speck of dust.  She struggles a lot with Isabella still and Mommy and Daddy not being together so her “stuff” is on lockdown.  The only way I can convince her to purge is her little cousin Eden who is 3. “Wouldn’t Eden love these books you read in preschool?”  Sophia’s heart is bigger than anyone I know – so of course, the thought of giving to her little cousin throws the book right in the box.  God, I love her.

Isabella’s room

The house is about halfway done now with the purge.  I’m enlisting the help of my Mom to come for Sophia and Grant’s room because I need a little reinforcement.  But there was one last room that deserved some attention and I have been holding off for 6 ½ years for it. The time had come.  My hand was being forced.

My first step was explaining to the kids what I needed to do.  I had to assure them her stuff was not being thrown away. In fact, it’s just being boxed up and moved with us so we can still have her in our new house.  I was just merely “cleaning and organizing” her room so we can find a better place for it when we move. They seemed okay with this idea. However, I knew that I couldn’t have them there for it because they would freak out if they watched.  Thankfully, two families graciously took my kids for the day and night so I could focus on the task at hand.

Now, how do I focus on the task at hand?  I knew myself and I knew that I had to be very strategic in how I went about this.  If I didn’t do this right, I could tailspin into something that could put me under water for days.  Do I bring my Mom down, or will that be too hard? Should I bring in some friends who don’t have a connection to anything?  I honestly almost went this route. But, I figured that I would be too quick with the process because I didn’t want to explain every item I picked up.  Otherwise, that would be another tailspin. Then it finally hit me. Miss Chrissy. If Isabella wasn’t with me or my mom, she was with Miss Chrissy.

Miss Chrissy & Isabella

I knew Miss Chrissy would be perfect because sometimes she comes over and just to kick herself in the heart she goes up there.  She fingers through her dress (that she mostly purchased) and revels in the tailspin for a brief time. This is usually done at Halloween when she comes over and we drink waaaaay too much on the front porch, passing out candy and listening to 90’s hip hop and some 80’s favorites.  It never fails, the alcohol content rises and we find ourselves stumbling up the stairs. She and I like to torture ourselves together.

Of course, she accepted the invitation because it may be the last true torture.  This woman… there is no one like her. Love.

She arrived and I tried to be organized.  Boxes, plastic bins, loud music… I was ready.  We walk in the room and we stand there quietly.  Then I start to cry. Well, that was fast. We start to attack it piece by piece and the conversation stays light.  She gets the update on my crazy life and I get to ask her about hers. We stop every couple of seconds as we hold something up and we just pause.  A large sigh comes over the both of us.

Isabella’s Drawing

We have a system.  Trash, goodwill, Eden and keep.  The system works well because the trash really is just stuff others have brought into her room to play with.  Sure, there are random beads and broken Barbie arm but otherwise, it filled up easily. Some things were hard. It pained me to get rid of anything that her handwriting was on, which was honestly stupid.  I remember saying, if Isabella were here – she would say, “Mom… why are you keeping that? It was a homework assignment.” But, I figure in a couple of years I will hit those papers again. For today – I wasn’t ready.

Goodwill.  Stuff that I have no idea why she had, who gave it to her and no memory of her wearing.  I have a memory that is a steel trap, so if I don’t remember then this is why Miss Chrissy was perfect because she would remember.  “Do you even know what this is?”. NOPE! Then off to Goodwill it would go.

Eden.  This was easy too because if you know Isabella, you knew she was picky about her clothes.  Anything that was pants – definitely for Eden. I’m not sure if I can remember her wearing pants 10 times.  She hated them because of how they fell on her bone marrow scars on the front and the back. And if she did wear them, it was because I forced her and a day of Mommy hate was to come, and I hated those days.  Needless to say, Eden has enough pants to last her awhile.

Isabella’s pumpkin outfit

Keep.  This is where things got weird and I thank god we weren’t being watched.  The mounds and mounds of dresses that Chrissy bought her that were over the top.  These dresses were ridiculous and are why Janie and Jack are still in business today.  Huge dresses with sweater cover-up and matching headbands. The outfits that were purchased specifically for holidays that you could only wear maybe twice.  My favorite, the orange tulle ballerina skirt with the cream shirt that had pumpkins on the collar and the matching cream button-up sweater with pumpkins on it.  One outfit sends you spinning into a memory. She wore this Janie and Jack pumpkin outfit (estimated value $150, ridiculous) one October and got a massive nosebleed due to low platelets.  We were in her bathroom and it was pouring out of her, all over this outfit. We couldn’t stop it. We called Miss Chrissy to come and stay with our kids and rushed her into the car – driving 30 minutes to Levine.  We stopped at a light and flagged down a police officer to escort us up, allowing us to run lights. She was bleeding everywhere. The outfit was ruined and it was all that mattered to her. Not the fact that she was bleeding out in the back of Stuart’s truck.

In Miss Chrissy fashion,  the outfit was fully replaced – with a matching outfit for Sophia.  The both wore these outfits together proudly almost into December. That is what you call a keep outfit.  

I could go on for hours on the clothing but I will spare you the details.  Although, just to add a funny story to the mix. Let’s talk about Isabella’s underwear.  Bear with me. If this girl wasn’t in a full-length gown, she was just in her underwear. A constant mix of fevers made her body temperature a little above normal.  So most times you were with her, she was walking around in a pair of princess underwear. We open the drawer and this one shocks us. Every little pair in the drawer I could see her in.  But now we feel weird because we are saving a little girl’s underwear. I’m actually laughing as I type this because we felt like creepy women. But it was actually an outfit. We couldn’t figure out what to do.  “I feel weird taking a pair!”, Chrissy said with a laugh. But I got what she meant. We saved a few in her clothing box and decided not to judge ourselves. I swore if it had a memory, it needed to be kept. So there.  I kept some undies. Ugh.

Isabella’s unopened letter to her best friend

The rest of the day proceeded and we found lots of really amazing things.  We found so many pictures she kept of her and Soliel (her best friend) and even notes she had written her that were still sealed.  We hated to open them but when we did we found they just said things like asking her to come over. They were simply just notes a 7-year-old writes her BFF.  We kept them all. We found pictures she had drawn of her and Grant that we knew he would love. We found a box of letters her class had written explaining how each of her classmates were going to live their life differently now that they met her.  All saved.

In the end… we finished.  Miss Chrissy took some items, pictures of them together etc.   And then there she was… all in boxes.

I don’t remember what all I said to Chrissy when she left but I know it wasn’t what I really needed to say.  She needed an hour-long thank you for what she did for her, for me all while killing herself I’m sure in the process.  The definition of selfless. I hate that she doesn’t have her anymore and I know she aches as much as I do. I hate that.  But all I can give her now are these torture moments – that’s all I have left.

I just rocked

I took her sheets off the bed to wash them and then I just sat in the empty room.  I sat in her rocker that I used so many times to rock her to sleep. I just rocked.  Then I sobbed like I never have – for a long time. Sobbed like it just happened all over again, which I rarely do anymore.  I couldn’t stop. I think I just let it happen because the house was empty and there was no one there to console me or hear me.  I was truly just crying about losing my daughter and how completely awful the whole thing is. I can’t tell you what was all going through my head.  I can only describe it as the worst pain I have felt in years.

I could barely move the rest of the day.  I ordered food and seriously ate a bowl of pasta in my bed. Forrest Gump was on TV and just stared at the screen.  I was in a full coma of heartache. So many people reached out to me that day and I’m so thankful for that. I’m not sure anyone could understand what that was like, but it really felt like my last goodbye to her, which is silly.  We talk about her every day in our home, at work and casually in life – but for some reason, it felt different. Closure that I had never had – but I needed.

And now we just have to move on.  I’m ready to be somebody other than just her mom.  I’m honestly ready and excited.

 

DWTS Blog #2: Why did I sign up for this again?

Written by Erin Santos, ISF Executive Director & President

Let’s back up a minute.  I realized as a talked to different people about Charlotte Ballet’s Dancing With the Stars that people had lots of questions for me about it.  Maybe I wasn’t doing a good job about communicating what I’m doing and why I’m doing it.  In it’s 7th year, the Charlotte Ballet asks 6 leaders from the Charlotte community to participate in their annual event that raises money for both the Charlotte Ballet and the charity of the dancers choice.  You are paired with a member of the company and have 8 weeks to practice a routine.  Then on March 2nd you perform in front a sold-out crowd at the Knight Theater, the one caveat is in these 8 weeks, you are asked to raise funds or “votes” with a suggested goal of $150,000.  The night of the performance, a fundraising champion is crowned as well as a judge’s choice for the best dance.  Seems easy enough, right?  Your selected charity receives 50% of your total funds raised – and for some dancers – it’s a shit ton of money.  As an Executive Director, receiving funds for ISF with no expense on the balance sheet for raising the money is your dream.  So here I am.

Right out of the gate, the dancing piece didn’t scare me.  Don’t get me wrong, that night I will shake like a leaf but honestly, I know I will get through it.  For me, the fundraising piece scares me.  The problem with selecting me as a contestant is that my JOB is asking people for money every day.  The rest of my competition probably isn’t out fundraising for a living so the ask from them may seem more rare – and therefore a little easier.  I have a very giving community of supporters from ISF who I’m hoping will see how important this is and vote for Juwan and I.  But what I’m also hoping will happen is the new visibility ISF receives in the community by being a part of the event.  People who may have never known of Isabella or what we are trying to accomplish for kids with cancer in Charlotte may come across our story and donate/vote to help us build this rare and solid tumor program at Levine.  I’m hoping new supporters and business will come out who want to support the Ballet but see the importance of what we are doing.   Crossing my fingers… also, everyone likes the underdog, right?

Right now I’m a big underdog and the competitive person inside me is struggling as I see my competition inching in on $150,000 raised.  (I’m just over $20,000) But people are telling me it’s early – so I’m counting on that.  So I continue to practice and check in occasionally on my funds raised – that isn’t moving.  But if you read about my journey and want to help – tell a neighbor, post it on your social media – email that buddy that owns a company that might make a big donation.  Anything you can do to help would be appreciated.  I’m honest with myself that I may not be the one with the fundraising trophy at the end, but I need to at least give it my all and would love any help you all can provide.  I just don’t want to embarrass myself. ☺  

Also, my competition has done a great job of filling the audience with their supporters.  I’m so grateful to those of you who are coming that night to watch.  Just seeing some familiar faces in the audience does wonders for me.  I have asked the Ballet to hold 20 tickets for me so I can get more familiar faces to the event.  These tickets are on hold until January 31st.  The event is sold out so if you want them – you have a couple of days to get them.   

Instructions on how to purchase from the held back tickets

1.    Please visit the website here and make a donation of at least $350 to equal one Gold ticket, $700 for 2 Gold tickets, etc. Once the transaction is received it will be recoded from donation to tickets.

2.    Within the guest names field please indicate “Gold Ticket Purchase” and the names of the guests using the tickets.

Now on to the dancing… or at least what kind of looks like dancing.

DAY 6

It’s freezing out.  It’s Sunday and it took everything I could do to get myself out of a warm house and head uptown.  Juwan seems stressed.  This guy dances in the ballet, goes to school, teaches classes, deals with my uncoordinated ass, has a new boyfriend and gave up drinking and social media recently.  I’ve been all over him lately about sending me the music so I can practice at home but I haven’t received it.  I can tell I’m annoying him.   Looking back, I should have been more patient because Juwan’s life makes mine look like I do nothing all week.  We are kind of snippy with each other and there is a little tension.  He takes a seat on the ground and tells me to practice my steps while he works on getting me the music.  I take a walk and realize that I’m probably pushing him because I’m getting nervous.  I also have personal stuff going on that weekend that I’m dealing with and I can feel myself swallowing the lump in my throat before I walk back in the studio.  I am not going to cry because if I do – it really has nothing to do with the music – it’s everything else that weekend.  I’m able to hold it in.  “I’m being a bitch aren’t I?” Juwan says as he comes over to me.  “Yes.  Yes, you are.”  I tell him.  I realize that we are both just dealing with shit that really has nothing to do with dancing.  A mental breakdown is brewing for us both.  We decide to lie down on the floor next to each other and talk nothing about dancing, music or the crap that is really just below the surface for both of us, and I’m okay with this.  Sometimes you just have these days.  I receive the music in my inbox the next morning at 7 am.  I love him.

DAY 7

Let’s start dancing again.  We are working on one of my favorite parts.  Juwan’s whole demeanor has changed and I can tell that both of us had a breakthrough of some kind since we saw each other last.  I’m hitting the steps.  I’m moving easier.  I’m not nervous anymore.  He asks how comfortable I am doing a stunt.  Hmmm… He shows me online and I think – okay I can do that.  He brings in a spotter.  Wait – why do I need a spotter?  Just trust me, he assures me – so I do.  And just like that, he flips me backward and I land it perfectly.  Confidence level – 10.  Okay, try it again but no spotter.  5, 6, 7, 8 and FLIP!  I land hard on the balls of my feet, in heels on the hardwood floor.  Both of my feet go numb.  I sit down instantly and he has me put my feet up against the wall.  They are tingling and I feel like I might pass out.  I look at the bottom of my feet and they are already blue.  I thought I had fractured both of my feet.  I take off my heels and slip my Uggs on – I’m done for the day.  I go home that night and watch my feet bruise from the entire sole of both feet, up the sides.  By the morning, the bruises are black.   Welcome to dancing.

DAY 8

Screw wearing heels.  This lady is back in sneakers.  The feet are tingly and a little numb but they are healing.  I’m not going to practice the flip again for a while but I assure Juwan that I’m going to master it.  I also let him know that the other trick I asked him to take out that took the skin off my ankles and gave me the massive knee bruise is back on.  If I’m going to do this thing – I’m going all the way.  My body will heal.  Juwan is in great spirits and it warms my heart to see him laughing and smiling.  He seems less stressed and I feel what little maternal instincts I have bubbling to the surface, wanting to take care of him but also knowing that maybe just by being a little better today in practice could help a little.  I’m hitting steps, I’m sliding on the ground (doing the move that once rattled me), and I’m hitting the mark.  “Look at you girl!  Knowing these moves!”  I shrug him off but I feel good knowing I’m making a little bit of progress.  We are a little ahead of schedule and I know I have 5 weeks to clean it all up.  I think I’m going to pull this thing out… if my body and my mind can hold it together.  Oh, and I’m starting to have fun.  Look at me.  Who knew?

Erin’s DWTS Blog #1

Event site: gala.charlotteballet.org

Isabella Santos Foundation Sees Significant Results in 2018

CHARLOTTE, N.C. – Jan. 22, 2019 – This past year, the Isabella Santos Foundation (ISF) continued to make great strides in the local and national pediatric cancer community.

The most significant development was the creation of a leading-edge rare pediatric cancer treatment room at Atrium Health’s Levine Children’s Hospital. This is one of the leading MIBG Therapy Suites in the nation and is slated to change the landscape of local cancer care. ISF completed its $1 million commitment to build the treatment room which will be used to treat children with neuroblastoma and in advanced clinical trials to test new products on different types of cancers. Construction began mid-2018 and was completed in eight months. The first patient was successfully treated there in December. More information is available at http://bit.ly/MIBGTherapy.

Among the $672,000 that the Isabella Santos Foundation donated to their mission of fighting pediatric cancer, $600,000 was given to Atrium Health’s Levine Children’s Hospital and $30,000 went to The Genomics Department at Nationwide Children’s Hospital to help fund the Neuroblastoma Killer Cell Trial. Additional funds were supplied to local Charlotte organizations that support kids and families fighting pediatric cancer.

Another significant mark ISF made, was partnering with Community Blood Center of the Carolinas to open CBCC’s first blood center in South Charlotte. Named in Isabella’s honor, the Isabella Santos Center is a state-of-the art blood center located in Ballantyne.

In addition, Erin Santos, executive director of and president of ISF, was named the Housing Opportunity Foundation’s “2018 Humanitarian of the Year” and was recognized among The Charlotte Observer’s editorial board among those who “made Charlotte better in 2018.”

This year, ISF is committed to raising $5 million to fund the ISF Rare and Solid Tumor Program at Levine Children’s Hospital. This breakthrough program is designed to research and treat a wide range of deadly pediatric cancers, and will allow the hospital to expand their clinical trials and recruit a national expert in rare and solid tumors.

“We are extremely proud of our results and the impact we made on the pediatric cancer community in 2018,” said Santos. “We are very grateful for our tremendous base of volunteers, supporters, partners and staff for helping us achieve these incredible accomplishments and improve the lives of countless childhood cancer patients.”

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for rare pediatric cancers, and charities that directly impact the lives of children with cancer. ISF was founded in honor of Isabella Santos from Charlotte, N.C. who lost her battle against neuroblastoma. ISF is committed to improving rare pediatric cancer treatment options in an effort to increase the survival rate of kids with cancer so they can live their dreams. ISF has donated over $3 million to date to expand the scope of pediatric cancer research and treatment, and to fill various needs surrounding childhood cancers.

For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation), Twitter (www.twitter.com/TheISFoundation) and LinkedIn (https://www.linkedin.com/company/isabella-santos-foundation/)

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CONTACT:

Jenni Walker – Walker PR Group – 980-339-8041-office/704-649-6571-cell

jenni@walkerprgroup.com

For Children with Cancer, Building a Room With a View to a Better Future

Originally published on Atrium Health’s Daily Dose

Opening one of the country’s few lead-lined rooms to treat rare cancers, Levine Children’s Hospital will soon change the landscape for local cancer care. And Charlotte can thank one little girl who inspired a community to build hope for kids like her.

Toward the end of her fight against cancer, 7-year-old Isabella Santos received a special therapy called MIBG that added 10 more months to her life, including another Christmas and another birthday spent with her family.

Back in 2011, Isabella had to leave her hometown of Charlotte for her MIBG treatment, which can only be delivered in a lead-lined hospital room that keeps the therapy’s radioactivity in check. But today, thanks to the foundation created in Isabella’s honor, children from Charlotte with rare types of cancer can stay close to home to get this cutting-edge treatment.

Levine Children’s Hospital, backed by a $1 million grant from the Isabella Santos Foundation (ISF), will soon open its own MIBG therapy suite – and become one of a handful of children’s hospitals in the country to have one.

This room “is really going to change the landscape” of local cancer care, says Javier Oesterheld, MD, medical director of the cancer program at Levine Children’s. An MIBG room can not only treat children with neuroblastoma – the type of cancer Isabella had – but also be used in advanced clinical trials to test new products on different types of cancers.

“We’ll really be ready for the next wave of clinical medicine,” says Dr. Oesterheld, who also treated Isabella.

A room like no other

LCH’s room has been designed to offer the best patient experience possible. The room is actually a suite – with a separate space where a child’s family can stay overnight.

During Isabella’s MIBG treatment at the out-of-state hospital, her mother Erin stayed in the same room with her and was exposed to a large amount of radiation.

“I felt extremely exposed at the time during the treatment,” says Erin, who is the co-founder and president of ISF. “Of course, I was willing to do that for my daughter, but I feel like keeping the parents safe should be as important as keeping the patient safe.”

The room at LCH will be one of the safest in the nation. More than 20,000 pounds of lead will separate the patient’s room from other parts of the suite.

Despite this physical barrier, the room will have several features that keep patients and their families connected. A lead-lined window will allow them to see each other directly. And an advanced audio-visual system will allow nurses and family members to monitor patients at all times – and even have a little fun.

“We’ve been able to let the parent and the patient play video games together from separate rooms. We have a great audio system where they can constantly hear each other,” says Dawn Bartock, CPNP, MIBG therapy clinical lead and pediatric nurse practitioner.

Erin Santos also wanted the room to reflect Isabella. Her artwork graces the walls, and the ceiling features twinkling lights and a shooting star.

“Every time I visit the suite, I can feel Isabella’s presence,” says Erin.

Community support changes everything

Although ISF has supported individual clinical trials and paid for LCH staff in the past, the MIBG room represents the foundation’s most significant contribution to date.

The room has been on Dr. Oesterheld’s “wish list” for a long time, because he knew how much it could improve care for his patients. And he’s certain it couldn’t have happened without ISF’s tireless fundraising in Charlotte.

“I think it’s monumental that our community has come together to make us the top pediatric cancer program we are,” says Dr. Oesterheld.

And more help is on the way. Earlier this year, the ISF pledged $5 million to create the Isabella Santos Foundation Rare and Solid Tumor Program, which will expand the hospital’s pediatric clinical trials and recruit a national expert on pediatric solid tumors as its endowed chair.

But the room is a tangible – and emotional – first step to improve the lives of so many patients.

“To think that Isabella will almost be gone longer than she was alive… what an incredible impact her seven years of life has provided for other families. I’m extremely honored that this is being built. I’m so proud of it,” says Erin.