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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 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.

I HOPE…

There are so many things we HOPE for.  This poem (author unknown) sums up all our HOPES and the reasons we continue to fight pediatric cancer.  We posted this poem earlier in the year and not only did it become our most popular post of 2017, but of all time.  As we wrap up our 10th year of the foundation, we thank you for fighting with us, for supporting us, for crying with us, for believing in us…. and most of all for helping us continue to keep Isabella’s legacy alive as we fight childhood cancer.  It started with a girl… and she is changing the world!

We hope you and your family have a wonderful (and safe) New Years Eve and look forward to conquering our HOPES together in 2018.

Isabella after brain surgery

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chem

otherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

(author unknown)

Give Back to Families Away From Home During the Holidays

Holidays can be difficult for families with a child fighting cancer. While many of us continue with our family traditions, many families will have to spend their holidays away from home. Ronald McDonald Houses across the nation are a place for families to stay, feel comfortable and feel safe. A home away from home.

Here in Charlotte we are grateful to have the Ronald McDonald House of Charlotte and their incredible staff. Locate your local house to inquire about what you can do to give back this holiday season. A couple ideas:

1. Cook dinner for families staying in the house. This is one of our favorite things to do as a group. Cook as a team from work or as a family. You will have so much fun!

2. Ronald McDonald houses have an ongoing Wish List of items they need to help the house run day to day. Toilet paper, deodorant, trash bags, ect. Pick some items from the list, take your child to help you shop, and drop off at your local Ronald McDonald house.

3. Do you have a business with event or sports tickets? While in town, families need to get out of the house. Donate your basketball or play tickets to help keep families keep their mind off the reason they are in town.

Isabella and her family stayed often at the Ronald McDonald House New York while being treated at Memorial Sloan Kettering Cancer Center. Ronald McDonald Houses play a significant and important role for families and we appreciate everything they do for communities.