Year Eleven – This is starting to become a habit!

Wow, yet another year has passed us by and this is now our 11th annual fundraiser. For those of you that could attend last year’s event for the 10th anniversary, we hope you had as much fun as we did. It was a great way to celebrate our milestone. Wyatt loved handing out all the special awards to our long time sponsors. You sure earned them!! With another $60,000 raised at the event, we are even closer to our $1 million mark with over $750,000 to date. It was such an honor to have some of our good friends at CHOP attending the event as well, particularly our neurosurgeon Dr. Storm. With our oncologist, Dr. Belasco, he has been a critical part of our lives for over 10 years now. It is through the dedication and expertise of these people that we are able to sleep at night. So many of these doctors not only work at the hospital and treat patients, but are also active in research efforts and even teaching and providing the benefit of their expertise to new doctors. They put in long hours and give up much of the free time that we all take for granted. They are super heroes to our family, even better than the X-Men.

As each year ticks by, it sometimes becomes easy to forget about this whole situation. When we look back, we cannot believe we have come this far and with very little problems overall. Nothing we can’t handle!! It almost feels like all is back to normal at times. However, we know too well that we are one MRI away from getting thrown back into this crazy world. But any day you don’t have to think about it is a great day. And our hearts go out to all the families like us who have not been so lucky.

The last year has been pretty uneventful. Wyatt had a little noise in two of his MRIs, but they seemed to have settled down. It has been over 3 years since his last chemotherapy treatments. The treatment could be continuing to liquify Wyatt’s tumor, but we cannot be 100% sure. Wyatt finally overcame all of his stomach stress and actually looks like the “old” Wyatt. He’s back to being our little foodie. He also started growing again, although he may not be able to make up for the two years he lost. However, it looks like he will grow to a normal adult height without putting him on growth hormone. While studies have not shown any strong connection to growth hormone usage and tumor growth, you are still wary about if it could affect the tumor. It just sounds a little crazy giving growth hormone to someone with a brain tumor. Through all of this chaos, he was able to make honor roll and be Student Council vice president. He also competed in the PJAS Science Fair at Penn State and got a first place. We are so very proud of him. Wyatt is now 13 and just started 8th grade. We can’t believe next year he’ll be a high schooler. He’s becoming an even bigger flirt with the ladies. Every day we see him, we know what a gift we’ve been given!!

On the research front, we provided the other half of our pledge towards a drug trial that was being started last year in collaboration with our friends at a Kids Brain Tumor Foundation. This is a multi-institutional trial and several of the key hospitals we have worked with in the past are involved. We are hoping that this and several other trials we have helped sponsor start to bear fruit soon. Each one does help us to learn more about the workings of this disease, however, we have not found our magic bullet yet. 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. We have included an extra invitation for each of you to share with just one additional person or business. 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 tickets can be purchased directly here.

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. 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 anyway). 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.

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