Year Ten – Still Going Strong and So Grateful!

Dear Friends and Partners,

We cannot believe that this year is our tenth year of brain tumor fundraisers and over ten years since we first found out about Wyatt’s brain tumor! When we tallied it all up, you have helped us to raise almost $700,000 for this important brain tumor research. That is simply amazing considering we put on one event per year and our donors are still a pretty small circle of friends, family and colleagues. In addition, the economy has not always been cooperative. This reinforces to us just how lucky we are to have all of you in our lives! Just think, if you have been a friends and family donor, you have contributed almost $5,000. Our top sponsors have donated anywhere from $10,000 to almost $100,000.

The last year has been a challenging one for us to say the least. Our “little” Wyatt is not so little anymore and will be entering seventh grade! Ten years ago, we would not have dared to think this far ahead for his future. Through a series of lucky breaks in the research world, we have been able to stay ahead of his pesky tumor. And it is a pesky little thing. While we have been so lucky that Wyatt has been able to lead a fairly normal life, as the tumor hangs on, it continues to cause several residual effects other than the obvious. The latest development is that Wyatt’s growth hormone may not be functioning properly and since his last surgery and chemotherapy, he has fallen down significantly on his weight and height chart. While he has luckily gotten back to his normal weight, his height increase is still slow. He had a test done at CHOP to determine if it is truly malfunctioning or just the result of his sudden weight loss a year ago. He scored a 9.2, while a score of 10 or higher is considered normal. We meet with the endocrinologists tomorrow to determine the next steps. It is possible he may need a daily growth hormone injection for the next several years. While this news startled Wyatt a bit, Jerry and I joked with him about how much the girls will flock to him when he is the first guy in his class to have a manly voice and full beard. As we always say, things can always be worse.

In addition to this problem, this poor kid has had his digestive tract scoped from every angle. We tell him that we can now say we know our son inside and outside, literally. He had to undergo some pretty uncomfortable tests to diagnose his stomach problems that caused him to drop from 90 to 62 pounds by last summer. While we are happy to report that his insides are pink and healthy, the bad news is that his stomach problems appear to be caused by stress. So, all we need to do is remove the stress from his life. That should be fun! If we figure out how to do that, we’ll make sure to test it on ourselves first and then we’ll let all of you know what that secret is. Don’t hold your breath. It is so hard to believe that stress can cause this violent a digestion issue. However, through this ordeal, we got to meet a whole new team of doctors at CHOP. While we can barely keep them all straight anymore, they continue to help us navigate this new world. We did get a break recently since school was winding down and his stomach has settled down so he can return to his “foodie” self. We’ve even learned to make homemade sushi. However, we anxiously await the beginning of school to see if the stress kicks in again.

And last but not least, his last MRI indicated some possible change to his tumor. It could just be the solid portion of the tumor continuing to liquify from his last chemo treatment. We won’t know for sure until his next MRI in October, but we could be facing a whole set of challenges. They retested his vision to determine if there was any change, but found that his vision in his one good eye has actually improved. It’s even better than 20/20, which we never knew there was something better than that. Go figure – such is the wacky world of brain tumors. But despite all of this, Wyatt continues to be our inspiration on all fronts. He has had a really tough year, but he still maintains that wonderful sense of humor and perseverance that many of you have seen first hand. Although as his parents, it is heartbreaking to see all that he has to deal with and especially now when he has to deal with the everyday challenges and stresses of figuring out just who he is and who he wants to be. We remember what a tough stage that was for us in our lives.

On a positive note, we did get some good news on the research front. Several of the drug trials we helped sponsor are having some positive results. Continued focus on discovering the genetic causes of these tumors is also yielding great things and there are drug compounds currently available to test these identified targets. In addition, the doctors believe that they can reuse some of the chemotherapies that Wyatt has already been on a second time and believe they have every chance to be as effective as the first time. This is fabulous news since we thought we were quickly running out of road. This may buy us time until we find a better long term solution or Wyatt outgrows his tumor. However, we still continue the fight because our brave son (and the other children that find themselves in this situation) deserves better than this! We fight for Wyatt – our hero, our role model and our fearless leader. We continue to collaborate with A Kids Brain Tumor Foundation, Dana Farber, CHOP and other research teams on our research efforts and we still feel their excitement as their efforts quickly progress. We continue to have more potential projects than we can fund. That is dramatically different than 10 years ago when we first started these efforts! You are directly responsible for helping us move this critical research along and should be very proud.

Please continue to tell your friends, family and colleagues about our efforts and encourage them to view our site. We really need all of you to continue to spread the word about our story and these critical research efforts. We have included an extra invitation for each of you to share with just one additional person or business. Even a small online donation 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 donation, company matching fund/sponsorships and numerous other ways. Many businesses have told us that they set aside money for these types of charitable groups each year. You can also run your own little mini fundraising effort by email (Ten (dollars) for Ten (years) for Wyatt!). We recently had one of our long time donors, Mary Louise Harris, turn 90. Her family collected donations in lieu of gifts and gave them to one of her favorite charities (lucky us!). It was such a wonderful and thoughtful thing to do for us. This is our tenth anniversary help make it a huge success. 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.

We are hard at work getting ready for our annual Lobster Fest at the Kilhefner Farm. We always try to think of a few new twists. Our new caterer, Robert Ryan, has done a fabulous job for us and is helping us 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 anyway). Wyatt is tuning up his guitar 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 helps out 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

Leave a Reply