Little's Big Thank You and Big Farewell

As I look back at this year’s Kids-on-Chemo Drive, I cannot help but feel overwhelmed with gratitude. The Fox Valley community rallied behind us in a big way! Littlest Tumor Foundation found themselves supported by a complete mix of community members including: fire fighters, neighbors, college students, schools, family, friends, and the list goes on... 

This particular Kids-on-Chemo Drive was a stand-alone event for the first time ever! It was a big task but the LTF crew pulled through with A LOT of help from volunteers, community members and participants.

The stars of the night, the headshavers, did an incredible job collecting pledges. No matter how big or small the amount collected, the donations we received will go to a great cause! I think a little recognition is in order:

Our Sami Cup recipient, raising $2900, was Linda Elliot. This was the second year she shaved her head for this event and we are so happy Linda uses her incredible drive to further our cause.

Other headshavers include Paul Williams, Kevin Martinson, Adam Mohr, Justin Dull, KC Stadler, Ryan Lee, Nick Davidson, Boyd Van Landghen, Zack Akin, and Brent Debenedet. We even had a few people sneak in without giving us their names! That is how eager the community was to help! In addition to headshavers, three lovely ladies donated their hair for Locks of Love: Kali Thompson, Sara Burns, and Megan Mau. 

Another key part of our event was our volunteers. We recruited the most amazing volunteers we could find! We wanted to give a BIG thank you to all those who donated their time and efforts to making this event the great success it was. 

This event also marks the end of my internship with the Littlest Tumor Foundation. What an experience! If I had to pick the most important thing that I am taking away from this experience, it would be this: Everyone wants to be a part of something bigger than themselves, even if it’s in a little way.

I am very thankful that I could be a part of the beginning stages of a foundation surely destined for greatness.

Sam i am ... love that sam

It has been a very busy time in our lives. Our Sami did indeed have surgery. He actually had PET, MRI, 1st opinion, 2nd opinion, surgery, post-op, pathology, post-op. We now wait for the next MRI coming up next month. We will stay positive that this tumor never returns and the ones on his spine do not grow. But if they do there will already be a treatment developed to deal with them. It can be done. I thought I would write a little from his perspective. He awoke from surgery and asked the surgeon, " Did you get the tumor out?" He then asked to see it. He very much wanted to bring the tumor to his science class as he just knew his teacher Miss Becky would really want to see it. Sami has such an energy about him it is infectious. He later told me he no longer has NF he only has N because the surgery got rid of the F. He is very happy this tumor is out and put away his special blanket my aunt sent him. He wrapped himself in it during the whole ordeal nightly saying it protected him and was healing him. Afterwards, he said he does not need it now but will use it again if he gets another tumor. So, our Sami does at the young age of seven understands what NF means. We his family are amazed by his spirit.

Plexiform Tumor Treatment

,I met with researcher Dr. Whalen at Children's Hospital Milwaukee. He took the time to talk to me about his research that is close to entering human trials. He has been working on Photodynamic Therapy (PDT). He described the therapy as a chemo drug with a light switch. It is tumor cell specific. A heme designed infer red sensitive chemo drug will only activate with a light source. His colleague at the University of Florida has had great success in animal models. They have implanted dermal and plexiform neurofibromas from humans and had great success with the PDT. He described it as tumors melting away. They have had great success with chemical, cell and animal trials. The pilot will focus on dermal superficial tumors and if successful will then move onto deeper plexiform neurofibromas. Systemic side effects have been minimal and the treatment is minimally invasive. This will be an exciting undertaking if this project gets funded and off the ground. As a parent of a child with Neurofibromatosis, it gives me such hope new therapies are on the horizon for a disease with no treatment. There are other new promising therapies which we will report on in June after the big Children's Tumor Foundation conference focused on research. Stay tuned.