Year Thirteen – Quickly Approaching Significant Milestones!
We are quickly approaching our 13th 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 2016 and raised over $65,000 at the event. We are on target to hit our $1 million mark by the 15 year anniversary with close to $900,000 raised to date. 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 were honored to have one of our partners from A Kids Brain Tumor Cure, Inc., Amy Weinstein, at the event last year to share with you the importance of our alliance with them for these past 12 years to further important brain tumor research. Amy has four children of her own yet spends countless hours working for the cause. Amy’s niece is about Wyatt’s age and has also been battling the same type of tumor (in a different location). She is an extraordinary young lady who has also been a terrific spokesperson for this critical research effort. Her whole family has been invaluable.
The last year has had a few ups and downs with our family, but an improvement over the prior year. Most importantly, Wyatt’s MRIs have continued to show little change! We also had another positive, but unexplained development. He has been able to discontinue the one hormone pill he was taking since his last surgery that controls your fluid intake and output. As you may remember, without this hormone, he would be drinking and peeing almost every hour. We asked his endocrinologist if they have seen this change happen before, but it is pretty rare and usually in babies. There is still so much that is not fully known about how the brain works. He does continue to take his thyroid medicine and it has really stabilized his weight. In addition, he has had no further stomach problems like he had two years ago. He did have a flare up with his lung wheezing around the same time he did the previous year so he missed almost 20 days of school. As we continued to work with the CHOP doctors, we now believe he may have some level of asthma that may be triggered by indoor heat and seasonal allergies. He was also probably having a bad reaction to the one inhaler he had been using. Once he was taken off this inhaler and given a different one, we were able to get the wheezing under much better control. He is also now getting a daily injection of growth hormone. We are now happy to report that he is finally taller than his mother and is quite handsome! He will probably continue this regiment for another six months. Unfortunately, it is like a giant puzzle and we have to fit all the pieces together to make it all work.
However, despite everything, Wyatt has been his usual amazing self and managed to complete his first year of high school with high honors and the majority of his classes were honors level. He was also an active participant of the Bethlehem Catholic Debate Team and performed in the spring musical, Oklahoma. He also succumbed to Jerry’s gentle (yeah right) fatherly request to take up golf with him. They even managed to include “mom” in this activity. It really has taught us patience and how to make fun of ourselves, but allowed us to spend some real quality time together. In March, he will be sixteen years old and begin driving. Even though he had complete vision loss in his left eye, our eye doctor at CHOP said he would still be eligible to drive due to the strong vision in his right eye. We know we are so blessed to have any level of “normalcy” in our lives and never take it for granted. We cannot believe that we are here after that terrible day in 2004! Wyatt is now at the point in his treatment that his tumor could start to regrow at any time, so please keep him in your prayers and thoughts. However, we know we have more options for further treatment and we do not have that paralyzing fear we once did at the beginning of this journey.
On the research front, the previous drug trials we helped to sponsor are still in full swing, but could take time to yield results. In addition, we just helped fund yet another drug trial with our friends at A Kids Brain Tumor Cure Foundation that is multi-institutional. We presented the check to them at the 2016 event. 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.
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, you need to select a charitable organization to receive your 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’ll be warming up those big lobsters and mixing up the hurricanes. 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