Year Thirteen – Quickly Approaching Significant Milestones!

September 18th, 2017

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!

Sincerely,
Jerry, Jessie and Wyatt Kilhefner

Our 12th Annual Fundraiser!

October 5th, 2016

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!

Sincerly,
Jerry, Jessie and Wyatt Kilhefner

Year Eleven – This is starting to become a habit!

October 6th, 2015

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.

Lobster Fest 2014 was a huge success!

March 2nd, 2015

Friends, Colleagues and Supporters –

What a great time we had for our big milestone year! We were so happy to be able to have our neurosurgeon, Dr. Storm from CHOP, this year to meet many of you and say a few words of encouragement and gratitude. He has been such a large part of our lives for the last 10 years and we are so blessed to have access to such a talented surgeon. He is now the Chief of Neurosurgery at CHOP. We were also happy to have Dr. Resnick from CHOP join us again. We have been working closely with his team and A Kids’ Brain Tumor Cure Foundation to include CHOP in our research projects. It was another successful year for us with over $60,000 raised to help further the exciting research that is in process as a result of your crucial support. We have already sent this money to help fund an additional installment for the drug trial that was organized last year with A Kids’ Brain Tumor Cure Foundation and several hospitals. Dr. Resnick’s team is a participant in this project. As we had previously told you, we now have more project applications than we can fund and momentum is on our side. It is a very exciting time in our research efforts. The Dana Farber Low Grade Astrocytoma Program we helped launch, has made great strides in identifying some promising biological targets and they are feverishly working towards testing various compounds available to impact these targets. There is a terrific webinar available which gives a great summary of the biology of these tumors and the various drug trials that have been completed or are in progress. It really sums up the results of all the efforts over the last 10 years. Why Not Me has been a participant in many of these initiatives. View “A Parent Education Webinar: Biology Pathways As Targets for Pediatric Low Grade Glioma Patients“.

For those of you that were able to attend the event, we hope you had as much fun as we did. The weather was great and Wyatt did another exceptional job of “jamming” with the band this year. He just seems more confident every year. We also had so much fun giving back to all of our event sponsors that have supported us for these last 10 years. We hope everyone liked their trophies and we had a terrific time handing them all out and getting pictures. We still have a few left that we will make sure get to their proper homes. The collapsible beer cozies and light up hurricane glasses were also a big hit!

The annual event not only helps us move this important and desperately needed research forward, but gives us the energy we need to continue to support Wyatt through this hard journey. While raising money is important, it is your selflessness and emotional support that is worth more than every dollar donated. For those of you that were unable to attend, check out the photos and highlight video from the event. We think the video this year really gives the feeling of attending the event and is another way we can share it with our supporters. We also have a Facebook page and we are on Google+. We will be locking in the date shortly for the 2015 event, so check back! We are hoping that you will continue to tell your friends and family about us. Even the smallest of donations quickly add up to significant sums of money. We have been starting to receive many more donations through our site. In addition, we are now registered with the Amazon Smile Program, which donates .5% of all eligible purchases. Click here and select Why Not Me as your charity for your purchases.

We are already talking about next year’s event and, as usual, welcome any suggestions for us. Please don’t hesitate to call or email us your ideas. We would especially be interested in your ideas about increasing our business sponsorships or linking into other fundraising groups. Many fundraising groups including schools, churches and sports teams, look for different charities to sponsor each year. Many businesses also have money set aside for these types of activities. As we always say, the most important lesson we’ve learned all these years of fundraising is that it never hurts to ask and all someone can say is “no”. It’s that simple.

Just a quick update on Wyatt since the event. He had 2 MRIs that showed slight changes in his tumor. It appears that the cystic portion grew slightly, but not the solid portion. This can be the result of continued tumor breakdown from the last chemotherapy he was on. However, his most recent MRI showed no further size increase, so we get another 4 month break. His stomach problems have pretty much vanished and he has put on all the weight that he had previously lost. We still have to meet with the endocrinologists to determine if he will need to be put on growth hormone. But other than that, he is doing great. We are so fortunate.

Sincerely,
Jerry, Jessie & Wyatt Kilhefner

Year Ten – Still Going Strong and So Grateful!

September 22nd, 2014

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

Update

June 30th, 2014

Well, our brave Wyatt finally gets a break from all of his stomach problems. He finished all of his remaining tests including his colonoscopy and they found a whole lot of nothing, which is a mixed blessing. We certainly don’t want them to find anything else for this kid to deal with, but on the other hand, it appears all of this is probably stress related. Just when we think Wyatt is cruising through all of this like a champ, he has probably been internalizing his stress about it and doesn’t even know it. We have noticed him getting better since the school year has ended. He did miss a good bit of school at the end of the year, but still managed to make honor roll. He is some kind of fighter! We’re hoping a long summer off from everything will help get things under control. Most importantly, however, is that the tumor is still stable.

We’re really gearing up our planning for this year’s event. October will be here before we know it. For all of our great supporters, expect your invitation soon. We can’t wait to taste those awesome lobsters again and have a great time with all of our most favorite people! We’ve also been receiving donations through the new website, so we hope everyone continues to get the word out.

Update

May 18th, 2014

Well it sure has been a week of ups and downs. Poor Wyatt has been battling stomach pain and some type of reflux since before Easter. He has had these types of problems before his second surgery and when he went back on chemo. He’s had numerous tests to determine what this could be, but everything came back fine. The doctors think it could be stress related, which isn’t hard to believe. Now we just have to figure out how to de-stress his life. That should be interesting!! As he says, “What a cruel punishment for a foodies to get.” That’s our Wyatt. Never loses his sense of humor.

However, the good news outweighed the bad news for the week. The first piece of good news was that his growth hormone isn’t as low as they thought it might be because he hasn’t really grown much in the last year. He’s not completely out of the woods and if it is too low, he will have to receive daily injections. Because of the good reading from the test, he gets the summer off from that issue. We honestly don’t know how this little guy gets through all of this.

The other good news we got was listening to a webinar given by our friends at the Dana Farber PLGA Program. If you missed the webinar, you can view it here to see (and hear) all of the good news that is coming from your important support. Overall, the outcomes for PLGAs is getting better and more treatment options are being discovered. For instance, they are finding out that they can re-use chemotherapy treatments and the tumors still respond. In addition, these tumors tend to stop growing on their own once the person reaches their 20’s. This information is a great target for research to determine what causes this change.

As we said before, we have a lot of momentum going right now and we have to continue to keep it moving. We will be sending out a letter shortly to our past supporters as a “call to arms” to help us expand our fundraising efforts.

This is our 10th anniversary, so let’s make it extra special!

Progress

April 14th, 2014

We just received a PLGA Program update from Dana Farber the other week and it was very exciting to read all of the various activities happening in the PLGA tumor world. We can really see a big difference in the number of research projects and drug trials that are in process! They now have several very promising targets to work on.

One of the first drug trials that Why Not Me helped sponsor is wrapping up with some very promising results. We are anxiously awaiting the formal publication so we can get all of the details. We are so proud to be a part of the original teams to help sponsor all of this important work. We can’t wait for the day when a parent and child are faced with the same circumstances we were 10 years ago and the doctor can tell them all the great treatments they have for the tumor that will allow them to live a full and normal life. This has always been our goal!!

While we know we have much work still ahead, we know there is energy directed at PLGAs that was not there 10 years ago. We are eternally grateful to all the wonderful friends, family and colleagues who have so unselfishly helped us through this journey. It is always such an emotional experience for us when we look out across the room at our annual fundraiser and know how lucky we are to know so many wonderful people. We have never felt alone in all of this.

A Time to Reflect

March 20th, 2014

Wyatt just celebrated his 12th birthday. We can hardly believe it has been 10 years since his brain tumor diagnosis. We know these past 10 years, full of many happy and loving moments that we dared not even think about when we first got the news, were given to us by many people we have never met. They dedicated their time, effort and money to help these wonderful kids that have been put in such a terrible situation. We can only hope that we are able to carry this torch forward for our son and all the other precious children like him. They all deserve a chance to develop into the wonderful teenagers and adults they have the potential to be. I hope that we can be as determined and fearless at finding a cure for them as they are at facing their daily challenges. We are so proud of the research efforts we have been able to accomplish in the past 10 years with the help of so many selfless people, but it is so critical to continue our efforts now that the wind is at our backs. We know that the last 10 years have been hard for our son, but he never complains. However, as his friends’ lives move along through these carefree years, this young man has a lot on his shoulders. We can only hope we will make him as proud of us as we are of him.