Tag Archive for: charlotte neuroblastoma foundation

Ethen’s Fight

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May 23, 2018 Update:
NO TRACE OF CANCER. Ethen had scans last week… and they were clear.
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April 29th Update:
“Tonight we put sprinkles in the pancakes and lit some candles to celebrate this little guy finishing his protocol for Stage 4 High Risk Neuroblastoma (and please forgive the cheesy singing). In many ways it feels anti-climactic – no ringing of a bell, no bubble parade from nurses – just the five of us who have walked through this storm together. In fact, he will actually get his last dose of accutane as he sleeps tonight and has no idea what any of this means. But he loves candles and pancakes and singing and his people. Tomorrow morning we meet with a research team to discuss his next two years of treatment on a clinical trial that will hopefully start in a month. It doesn’t ever really end and we have learned in this new “world” that nothing is ever certain. So we will celebrate every victory, kiss his head a thousand times a day, and accept every snuggle we can. And we rejoice that this strong kid has survived this past year and is thriving right now. (See the video at the end to see what he finally decided to do last Sunday to melt our hearts – the kid is confident to walk almost anywhere now!)  “Ethen’s Mom
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April 6th Update:

“A year ago today we sat in “the 8 room” of floor 11 at Levine Children’s Hospital and heard the final diagnosis of Stage 4 High Risk Neuroblastoma. The team had prepared us so well to hear it and even so that lengthy discussion filled the room with an immense weight and tension. I remember exactly where Dr O sat and that he spoke with just the right combination of frankness and compassion, but the rest of it is a blur in my memory. I heard words and categories that took me months to understand, but what I did understand was that all of what he said meant this was the bad kind, the aggressive kind, the kind that had already moved to other areas of my child’s body. By that point Ethen was already becoming unrecognizable in look and behavior due to fluids, pain medication and effects of multiple lengthy anesthesias over the week prior. Three days later he would be in the PICU. We knew our child was sick. So when Dr O said we should start chemo that afternoon, we were fully on board.

Today Ethen is here and playing, and as you will see in the post below, he is doing much more. The song my husband posted on the blog is perfect. We are so grateful for today and are seeking to trust in the days ahead no matter what comes.”  -Ethen’s Mom

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March 2nd Update:
This sweet and silly cancer fighter turns 2 today! Please help us wish Ethen Happy Birthday. Ethen’s mom says that Ethen is “full of silly and fully aware of how to get someone’s attention and be ridiculous.” Ethen is still doing well and getting strong each day. He is currently continuing his Accutane treatment, which can make him act a little funky at times. But he is making it through!
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February 9th Update:

Positive news on this peanut to kick off Friday. Ethen went back home earlier this week and is doing very well after taking a big turn in the right direction. Ethen’s mom mentioned to me that the support they have felt is remarkable. Keep praying and lifting their family up. We appreciate our supporters and what they can do for our community and beyond!

Although Ethen will not be doing any more antibody treatment, he will continue on Accutane treatment followed by scans to check for relapse prior to scheduling surgery to remove his Hickman line and G-tube. Then Their hope is to be able to enroll him in a DFMO test trial. If you remember, DFMO was part of a trial in which you helped us fund starting out of Michigan. Results and ease of of the drug on patients have been incredible.

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February 5th Update:
Happy to update that Ethen is starting to return to his silly self. With slight improvements since we last posted, the medical team extubated Ethen last Monday. By Wednesday, the PICU team had weaned Ethen’s oxygen and pain medication enough that they felt comfortable releasing him from PICU to the oncology floor. The medical team continues to monitor his oxygen as well as Ethen’s weight. Ethen’s parents have decided to not undergo any further antibody treatment due to the life-threatening effects it had on the little guy.
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January 23rd:
We want to introduce you to Ethen, a pediatric cancer fighter from North Charlotte, who is in need of lots of thoughts and prayers. Ethen was diagnosed with stage 4 neuroblastoma in April of last year at 18 months old. In the past 10 months, he has endured many rounds of chemo, a major tumor resection surgery, 1 bone marrow transplant, radiation, and 2 rounds of antibody treatment. That’s a lot on a little body.
 
Last week, Ethen started his 3rd round of antibody treatment. Ethen developed capillary leak syndrome, which affects his breathing. Due to respiratory distress, Ethen had to be intubated and rely on a ventilator. He has also developed cytokine-release syndrome, which is another side effect of antibody therapy.
 
Ethen’s lungs have been considerably damaged so it will take time to repair. The fluid and inflammation have reduced his lung volume and functionality. Throughout the last several days, Ethen has taken steps forward and then some steps back. After removing his breathing tube, the medical team had to intubate him again and put him on a oscillator.
 
For those looking outside in and have not personally experienced a child’s fight with cancer… one would think you receive chemo and it makes you sick. When the reality is the impact of adult-like treatments are extremely difficult on little bodies like Ethens’. A child’s body has to fight really hard to deal with various cancer treatments; therefore, not only do they have side effects during the treatment, but forced to face continuous life complications due to the harshness of the treatments on top of that.
 
Please help us lift Ethen and his family up. Being so dialed into Isabella’s care and near her family… I can attest that it makes a difference. The family can feel it. We will continue to share Ethen’s progress. You can also stay updated through his Ethen’s Fight  Facebook page where his parents post updates via their blog.

It Started With A Girl…

New year. New look.  With 10 years behind us, we made the decision to start the new year with an updated look.  We have so many new things on the horizon, we felt like our Isabella logo needed to evolve again as the foundation grows.

You probably have noticed that we take every detail into consideration here at ISF.  We like purple… we like to make sure our mark in on everything and no bow goes untied.  Our ISF girl logo is no different.

When the foundation was created, our stick logo was created based on Isabella.  Very innocent and child like.  Because of Isabella’s physical limitations, art became her safe place.  Isabella would spend hours drawing and coloring.  She would draw pictures for everyone and it became her way of saying thank you.  What started as a stick figure little girl that Isabella could easily draw and color, became something else.  It became her legacy.

Several years ago, Isabella’s stick figure logo evolved into the girl on the world.  After all, that is how we all saw Isabella.  We saw that the world was at her fingertips and no matter what happened to her, she was going to conquer anything.  It started with a girl….

This logo has moved and shaped into a life of it’s own.  We love to spot our Isabella logo around the community and on the walls in the hospitals or organizations we work hard to impact.  We love that Isabella lives on through her own art stamp and that we see her in the kids we are hoping to help. She is changing the world.

What do you think of our updated Isabella logo?

ISF Volunteers: 2017 Highlights

It’s pretty incredible to look at the amount of hours individuals invest together for a greater purpose. Our volunteer network continues to grow and we hope that you will add ‘Volunteer With ISF’ to your 2018 Intentions list. Thank you to everyone who gives their time and heart!
 
Our first event in need of volunteers is at the end of this month. American Bus Association is coming to Charlotte & has chosen ISF as their charity for their Give Back program. ISF will have a booth at the 5-day convention, Friday 1/26-Tuesday 1/30. Please consider volunteering for a shift(s).  Click here to view shifts and sign up.
 
Reminder: We have a “ISF Volunteer Group” Facebook page for opportunities & information. Please click & join to keep updated on volunteer listings and  updates throughout the year.  Questions or requests can be sent to our Event & Volunteer Coordinator, Karen Murphy: kmurphy@isabellasantosfoundation.org.

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.