Tag Archive for: charlotte neuroblastoma non profit
“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
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.
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?
$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.