Year Fifteen – The Year of the Headache!

We had yet another great turnout for our 2018 event and raised over $70,000, which put us over our goal of $1 million ahead of schedule! We hope everyone that could attend had as much fun as we did. This has truly left our family speechless which is NOT an easy thing to do. Thank you so much to all of our donors for their unwavering generosity and support!  

We were looking forward with excitement to our big 15 year anniversary this year. However, it is with great disappointment that we will need to put that one on hold until next October due to Wyatt’s current health issues. There is no way that any of us could really enjoy the event right now and we really have to put all of our focus on resolving Wyatt’s health issues and getting him through his senior year of high school. Wyatt developed daily persistent headaches in January. Yes – January! They came out of the blue on January 1st and the doctors have still not been able to resolve them. 

This is particularly frustrating since his last several MRIs did not show any growth, but did show a slight pinpoint hemorrhage in the tumor. However, the doctors do not feel that this could be the cause of his headaches directly. These headaches started out as a 3 to 4 on the pain scale, but quickly went up to 8 to 9 and have stayed there. Wyatt has gone through endless blood tests and a few medication adjustments with absolutely no success. So we are now working with the headache specialists at CHOP Neurology to try to resolve them. He also tried several medications and even had his first set of nerve block injections in the back part of his head – also, with no success! This is absolutely heartbreaking as we had a wonderful summer prior to all of this. We really felt the worst of everything was behind us. We thought the respiratory and stomach flare ups were bad, but we would gladly settle for them now. These headaches never stop – day or night – and he has not had a solid night’s sleep since they started in January. The headaches wake him up each night and he may be up for 2 to 3 hours until he can sleep again. We are just grateful that they are not making him nauseous like migraines can. We have absolutely no idea how he has continued to function through all of this as it is wearing us all down! He has his next MRI in a week, so please keep him in your thoughts and prayers that this gets resolved soon.

While Wyatt was not able to participate in much extracurricular activities since this all started, he still somehow managed to achieve high honors in his most challenging year of high school with these crazy headaches. He was also inducted into the National Honor Society. He was only able to attend school half days. We just honestly don’t know how he was able to do this! He is the toughest person we know. His mom had to dust off her old Algebra II and Physics knowledge to help out with some tutoring. While she enjoyed math in high school and college, Physics was one of her least favorite subjects. He is back at school for his last year (after a miserable summer), but again doing half days. We are just grateful that his schedule for his last year is not as demanding as junior year. We gave him the option of taking this year off until we try to get his health back on track, but he preferred to try to graduate with his class. Despite all of that, we have been looking at colleges and he has been taking his SATs and ACTs. We looked at several colleges over the past year and Wyatt wants to work in the video game industry in story and character development. He is considering several options, but we may have to be flexible if his health does not get back on track. We recently reached out to Make A Wish to see if we can have Wyatt visit one of his favorite video game companies to get an up close view of how they operate and maybe even work with them on one of their games. After this extended battle, he certainly deserves this and they are working on setting it up for him. He also was asked to attend a dinner with his mother with several new and potential new donors for CHOPs brain tumor research program as a spokesman. He made a lasting impression on all of them! Why Not Me also did a sponsorship for CHOP’s big brain tumor research fundraiser in Philadelphia, Cheers for CHOP, where they raised over $700,000.

It is hard to believe, but this has probably been the most challenging part of our whole ordeal. It is agonizing to have to watch your child suffer and there is nothing you can do for them despite having access to the best doctors in the world. He should be having the time of his life in his high school years. He even had to put his driver’s license test on hold since many of the meds he is on make you dizzy and sleepy. All we can do is try to joke around and keep his spirits up. His mom has spent many nights keeping him company when he is unable to sleep. We have many great memories to hopefully laugh about someday soon. We just keep telling him that his life may have more twist and turns than the average, but we can still find a way to hopefully get him where he wants to go – we just have to be more creative about it. People often ask us how we deal with all of this and the answer is easy – our son is still alive. We have met countless parents and grandparents over the years that cannot say the same and would do anything to be in our shoes.

On the research front, we continue to have some key success.  The most recent drug trials we helped sponsor with A Kids Brain Tumor Cure and several other organizations using a compound called MEK162 showed great promise in treating certain low grade pediatric brain tumors. While it may not be a permanent solution, it is another weapon in the arsenal. Based on the Phase I results, it is quickly moving into the Phase II trial. We also helped sponsor an additional trial with TAK 580 that shows even more promise in treating low grade pediatric gliomas. These trials include several of the key hospitals we have worked with in the past including Dana Farber and CHOP. These trials are designed to target specific signaling pathways and gene mutations identified in the low grade gliomas. We have also been in discussions with CHOP related to an additional two drug combination trial they would like to launch soon. 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.   

On another note, we want to acknowledge the passing of yet another one of our dear friends and donors, John Healey. John was an early key mentor to Jerry when he was starting his business. He was always there with great advice and humor. He will be missed by so many!

But while we are not having our lobsterfest this year, we are hoping you will still support our fundraising efforts in some way this year. There are still research projects we need to fund as brain tumors unfortunately do not take any time off. We also need to show Wyatt and other kids like him that they are not fighting this terrible disease alone. As you can clearly see, these terrible tumors can cause a whole host of other problems for these innocent kids. While Wyatt is always stoic through his fights with this, I know that as he comes into adulthood now that he just wants to live a normal life. He worries that he won’t be able to try to do the things in life that give him great joy and that he will have to be dependent on his parents. How does he cope with this on top of the regular stresses of being a young adult?

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 still at a very critical point in making sure we support the renewed efforts in this area of research. 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 (smile.amazon.com), 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. 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.

This was a tough decision for us to cancel the event for this year, but we also want to make sure that our 15th anniversary is our best celebration yet and that Wyatt can really enjoy it. Once we get his health back on track, we will have much to celebrate with our closest friends and supporters. God bless you and your families for your continued support through this unbelievable journey!

Wyatt Update: We just got the results from Wyatt’s latest MRI which show growth that we will probably need to tackle surgically and with additional treatment meds. Please continue to keep Wyatt in your prayers.

If you would like to send Wyatt a message of support, please send him an email at why.not.me.inc@gmail.com.

Leave a Reply