Year Fourteen – Another Year of Significant Progress and Milestones!
We are quickly approaching our 14th annual Why Not Me fundraiser! We hope that you had a great year and that you and your family are well. We had another great turnout at the event in 2017 and raised over $70,000. We are still on target to hit our $1 million mark by the 15 year anniversary in 2019 with close to $1 Million raised to date already. If this year goes as well as last year, we will probably hit that goal this year ahead of schedule! We never imagined we could achieve this amount of fundraising with a relatively small number of donors. This surely speaks to the enormous generosity of all of you. It is that consistent support that really allows the research to move forward. We really appreciate so many of you sticking together with us over the years and it has made such a huge impact in our lives and through our journey.
While the past year started out on a scary note, it ended up being one of the most uneventful ones with respect to Wyatt’s health. Right after last year’s event, Wyatt’s tumor grew a bit so he was immediately taken off the daily growth hormone injection he was receiving. His mother was not sad to see the end of that routine since she was the lucky one that was elected to give him the injections! While Wyatt was his usual cooperative and brave self, his mother now knows why she was an accountant and not a nurse or doctor. Sharp pencils or even kitchen knives are fine, but needles not so much. While growth hormone has not shown to cause tumors to grow in the national studies, there can always be exceptions or the growth was completely coincidental. Wyatt was able to gain 2-1/2 inches in height on the short time he was taking it, so it accomplished the goal for him (just to be taller than his mother). One really positive aspect of this latest tumor growth incident is that the tumor stopped growing without any treatment. This tells us that his tumor does have an “off switch”. He continues to only need a daily thyroid pill and his mild asthma is under control with a daily inhaler. His stomach issues have been considerably better as well and only flare up during times of great stress. So in our world, life is good and we are so blessed!
Wyatt continues to move forward in his life as he turned 16 in March. He finished his second year of high school with high honors again. He participated in the Bethlehem Catholic Debate Team and the Choir and took on a bigger role in the spring musical, Godspell. He had a solo singing part and had the audience laughing at his impression of “The Godfather”. He was also a good steward of the brain tumor research cause by attending CHOP’s All In For Poker tournament with his parents in NYC in November (where he and Jessie were interviewed on camera) and he spoke at Bethlehem Catholic’s mini-thon. He passed his driving permit test the first time and has been practicing his driving (with that one good eye) with his mom. Life almost seems “normal”. However, the challenges in his life have not been without impacts. He still has a maturity that is way beyond his years which doesn’t always make it easy to be carefree in these teen years. The anxiety of these teen years are added onto the anxiety of these lifelong health issues and he has to work really hard to not be overwhelmed. Unfortunately, this is not an uncommon challenge for kids in his situation. We continue to emphasize the need to enjoy the journey of life and not be so focused on the end goals. This is a lesson that we, as his parents, have had to learn as well. We also remind him of what an amazing and exceptional young adult he has become.
Along with this good news for our family, we want to acknowledge the passing of one of our dear friends and generous sponsors, Dave Davis. Dave was one of those great eternal optimists and selfless individuals that gave back to the world in so many ways and, in particular, to our cause as well. He will be missed by so many!
On the research front, we have had some key success. The most recent drug trials we helped sponsor with A Kids Brain Tumor Cure and several other organizations using a compound called MEK162 showed great promise in treating certain low grade pediatric brain tumors. It is a once daily pill with minimal side effects. These trials continue to determine its long term effectiveness. Based on the result of the MEK trial, we are also helping to sponsor an additional trial with TAK 580 (that will open for enrollment shortly) that shows even more promise in treating a much broader spectrum of the low grade pediatric gliomas, including the gene mutation that is present in Wyatt’s tumor and the majority of LGG tumors. These trials again include several of the key hospitals we have worked with in the past including Dana Farber and CHOP. These trials are designed to target specific signaling pathways and gene mutations identified in the low grade gliomas. How awesome is that?! In addition, our pipeline of potential new projects is still full. We simply could not fund this costly research if we didn’t have your critical and ongoing support. And while the medical research is so important, your moral support has been invaluable to our family as well.
Please continue to tell your friends, family and colleagues about our efforts and encourage them to view the site. We really need all of you to continue to spread the word about our story and these critical research efforts. Even a small donation online can add up to a large amount of funding. This is so important for us to continue to grow this effort. We are at a very critical point in making sure we support the renewed efforts in this area of research. We’ve had many donors that have come up with creative ways to raise money for our charity including selling flowers and candy, school dress down day donations, birthday or special event donations and numerous other ways. You can also run your own little mini fundraising effort by email or Facebook. Many businesses have told us that they set aside money for these types of charitable groups each year. In addition, many companies have matching donation programs for charitable giving. The number one lesson in fundraising we learned is that the worst thing that can happen when you ask for help is that someone says no.
Why Not Me, Inc. is also still registered on Amazon as an AmazonSmile charity. The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. On your first visit to AmazonSmile (smile.amazon.com), you need to select a charitable organization to receive donations from eligible purchases before you begin shopping. They will remember your selection and then every eligible purchase you make at smile.amazon.com will result in a donation. These donations are automatically sent to us each quarter. This is an easy way for donations to add up quickly especially if you love Amazon as much as we do.
We are hard at work getting ready for our annual Lobster Fest at the Kilhefner Farm. Our great caterer, Robert Ryan, is helping us put out a terrific meal again this year. Our friends, the Mango Men, will help us bid farewell to another summer. We will be steaming those big lobsters and mixing up the hurricanes. Wyatt is tuning up his guitar and voice for the evening and we have already gotten some great items for the raffle. We are so excited to see all of our favorite people and will be thinking of everyone that makes a donation, but can’t attend the event! God bless you and your families for your continued support through this unbelievable journey!
Sincerely,
Jerry, Jessie and Wyatt Kilhefner
