Here we are again – another year has passed us by and we are upon our 12th annual fundraiser. They all go by so quickly. 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 2015 and raised over $60,000 at the event. This gets us even closer to our $1 million mark with over $800,000 to date. How exciting that would be if we met it by our 15 year anniversary. It was our pleasure again to have Dr. Resnick from CHOP attend the event and tell us about the exciting things they are working on for brain tumor research, particularly their data analytics and sharing initiatives. This is such an important initiative to leverage large amounts of brain tumor information across researchers for use to facilitate treatments and cures. This, combined with a robust tumor bank, is a powerful tool in this fight. These are such important changes that need to be made for pediatric brain tumor research and we applaud CHOP for taking them on. We are so excited to have one of our partners from A Kids Brian Tumor Cure, Inc. at the event this year to share with you the importance of our alliance with them for these past 12 years to further important brain tumor research.
The last year has been a little crazy. While Wyatt’s MRIs have not shown much change, he contracted a nasty bacterial infection in his lungs on Halloween night and it persisted until about July. Yes, you read that correctly – eight months! Everyone initially thought it was asthma, but it turned out to be a stubborn bacterial infection. Wyatt had to be subjected to a bronchoscopy for them to properly diagnose the problem. It also required many doctor and a few hospital visits to nail it down and it caused many sleepless nights as a result of coughing and wheezing. On the bright side, we now have met some of the great doctors and nurses in CHOP’s Pulmonary Department. We joke with Wyatt that he won’t be happy until we’ve made the rounds at all the major CHOP areas. (Oh gosh – let’s hope not!) But seriously, it was a long haul and he still managed to piece together the school year and make honor roll. He is such a great young man and we don’t know how he does it! All of this drama can sometimes even push his parents to the brink. These poor kids should not have to go through all of this!
On the positive side, it has been over 4 years since his last chemotherapy treatments. He also continues to grow at a slow pace, but without any growth hormone medication. The latest endocrine wrinkle is that his thyroid is slow as well, but a daily pill (that many people take) has fixed that problem. The endocrine issues are an unfortunate side effect of his tumor location near the hypothalamus and pituitary, but are controllable with medication. His next MRI is scheduled in October, so keep your fingers crossed that it continues to be stable.
Wyatt turned 14 in March 2015 and just started 9th grade (high school) at Bethlehem Catholic. We can’t believe that we are here considering how we felt the day we got the news of his tumor in 2004! However, as he continues to push through each year, all the medical issues do take a toll sometimes. Balancing all of this can be quite stressful at times, especially as he moves into young adulthood and the constant pace of change in his life right now. We need all the prayers and good wishes we can get, so keep them coming our way! However, despite it all, we are winning this fight!
On the research front, the drug trial we helped to sponsor last year is in full swing, but could take time to yield results. In addition, we are getting ready to help fund yet another drug trial with our friends at A Kids Brain Tumor Cure Foundation that is multi-institutional. This trial again includes several of the key hospitals we have worked with in the past, including Dana Farber and CHOP. This trial will focus on one of the gene mutations that was detected in Wyatt’s genomic scan of his tumor from his last surgery. One of the previous drug trials had a positive response rate for a small group of participants and information obtained during the analysis is being further leveraged for additional research efforts. How awesome is that?!! We are hoping that this and several other trials we have helped sponsor continue to get us closer to better treatments and ultimately a cure to these tumors. 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, company matching fund/sponsorships 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. Don’t forget that donations can be made and tickets for Lobster Fest 2016 can be purchased online.
One other reminder, Why Not Me Inc. is 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, 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 for Why Not Me. 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. Each year it seems a little harder to come up with new ways to surprise everyone, but like a miracle, the ideas flow the closer we get to the day. The bounce house and huge inflatable obstacle course was a big hit and we loved seeing how much the kids enjoyed it. We, of course, had to try it out before everyone arrived. Our great caterer, Robert Ryan, is helping us put out a terrific meal again this year. Our friends, The Mango Men, are coming back for a repeat performance as we bid farewell to another summer with some great Caribbean music. And of course, we’ll be throwing those big lobsters “on the barbie” (well, in large pots). Wyatt is tuning up his guitar for the evening and we have already gotten some great items for the raffle. We’ll gladly accept any donations of goods or services for the raffle as well. 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!
Jerry, Jessie and Wyatt Kilhefner