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9/8/2013
Nine years ago today the gates of heaven opened so Jeffrey could pass from this world to the next. What a glorious sight he must have seen. I try to imagine what that experience would have been like for a 12 year old and picture the look on his face. Just thinking about that moment is too emotional to describe.

This would have been his senior year in college and we wonder about the choices he would have made and the type of young man he would be today. It’s never easy to understand why a life so full of promise is cut so short, but this is the situation we deal with on a daily basis.

Our journey continues and we long for the day when a cure can be found. Progress is being made on the medical front, but we have a long way to go. We appreciate all the support from friends and family, along with everyone else that has been touched by Jeffrey.

Jeffrey… We love you and we miss you, and we will never forget you.


9/8/2010
Another year without our buddy.... We're doing ok but the hurt stays... Joe heads off to college next week and we are excited about the life he has in front of him.

I think I have shared this poem in the past and I still find it to be a source of comfort...

Do not stand at my grave and weep,
I am not there. I do not sleep.
I am a thousand winds that blow,
I am the snow on the mountain's rim,
I am the laughter in children's eyes,
I am the sand at the water's edge,
I am the sunlight on ripened grain,
I am the gentle Autumn rain,
When you awaken in the morning's hush,
I am the swift uplifting rush of quiet birds in circled flight,
I am the star that shines at night,
Do not stand at my grave and cry,
I am not there, I did not die.


Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


4/19/2010
Every once in awhile I see something that makes me smile. Today a friend of mine posted the following letter to his mother on his facebook page. I thought it was the perfect thing and wanted to share it with you. Thanks Michael!

"I wish Heaven had a phone so I could hear your voice again..

I thought of you today, but that is nothing new. I thought about you yesterday, and days before that too.

I think of you in silence, I often speak your name. All I have are memories and a picture in a frame.

Your memory is a keepsake, from which I'll never part. God has you in his arms.. I have you in my heart."

We Miss & Love you Buddy!!!


9/7/2009
Five Years

Five years ago today Cindy and I lost our son Jeffrey to cancer. Joe lost his brother and best friend, but the world lost a great kid. Not a day goes by that we don’t think about him and wonder what life would be like if he were still with us. Sometimes these thoughts bring a smile and sometimes they bring tears, it’s hard to say which because these emotions are not predictable.

Five years is a long time. Five years is an eternity. Five years dealing with the pain and anger of a broken family can wear you down. Five years without our Jeff is tough to take. Five years of asking “why Jeff” and “why us” takes a toll on your mind. Five years of wondering if we could have done something different drains your energy. It is truly been Five years of hell….

Then I reflect on the good things that have happened over the past five years I realize the number of lives that Jeff has touched and that smile comes across my face. His spirit lives on in each of us and his zest for life brightens the darkest days. We are truly appreciative of the support we receive from friends and family, without which we would be lost.

Normally we mark the anniversary of his passing with a balloon launch by his tree at Freedom Elementary. We intend to do that but we haven’t set a date yet. It seems our busy schedules have a way of altering the best of intentions. Stay tuned, we will send out a notice shortly.

There is a message that I would like to say to the Class of 2010…. You are special and destined for great things. You will have opportunities that your parents never had and you will face challenges that will require all the strength and courage you can muster to overcome. The future is yours and you can change the world by getting involved and caring about what happens around you.

Even though Jeffrey started this journey with you, you must finish it without him. All I ask is that you honor him by doing good deeds and keeping his memory alive inside of you. Don’t waste the chance that Jeffery and others will never get.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away.

Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet. Check out the website for more details at www.jthf.org

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


8/28/2008


It's hard to believe that 4 years have gone by since we lost Jeff to a brain tumor. Since that fateful moment on September 8th, 2004, not a day has gone by that we don't think about him and the impact he made on us. His smile and his zest for life are firmly impacted in our memory.

On Saturday, September 6th at 6:30PM we will gather at the tree, which was planted in his memory at Freedom Elementary School, for a Balloon Launch. BYOB - Bring Your Own Balloons. However you know us, we will have a few extra if you need them.

Prior to the Balloon Launch we will attend the 5PM mass at St. John's Church in West Chester. Immediately following the Balloon Launch friends and family are invited to our house for a good old fashioned cookout and pool party. Jeff always loved a party and I can't think of a better way to honor his life than to share some quality time with friends.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet. Check out the website for more details at www.jthf.org

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/17/2007
Happy Birthday Jeff and Jennifer!

Sweet 16… Oh Jeff… how we would have loved to see your smiling face on this special day and to experience the joy in your heart and the twinkle in your eyes. It’s sad that we must celebrate this day without you, but the memories of your happy face are still vivid in our minds. Jennifer, you will always have a special place in our hearts and we are sad that your time here was so short.

Jeff, we know that Joe misses you more than he leads us on to believe and we know that there is a hole in his heart that can never be filled. Turning sixteen brings more responsibility and trust than any other birthday. It’s about becoming a responsible adult and making good decisions. As we turn over the car keys to Joe we know that you and Jennifer are there to watch over him and that gives us some comfort. We trust in him that he will make good decisions and take responsibility for his actions.

We know he draws his strength from you and that you will always be an important part of his life. We wish that you were still here to enjoy all the wonderful opportunities this life gives us, but sadly the reality of childhood cancer has taken that hope away. The foundation that was created in Jeff’s name will hopefully be able to play a small role in finding a cure, and that is what motivates us to keep his memory alive.

Happy birthday buddy… we miss you.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


9/3/2007
We miss you buddy!

It’s still so hard to believe that he is gone. His young life, which was so full of promise and adventure, was taken away by a disease that still has no cure and very little hope for those that are diagnosed with it. In this day in age of advanced medicine and revolutionary breakthroughs, researchers are still stumped. No real meaningful treatments, no roadmap to a cure, and no national network or organization to focus on fundraising and awareness for Diffuse Intrinsic Pontine Glioma (DIPG). This is what fuels the anger and drives us to do something to help.

Each year, hundreds of innocent kids bravely wage war against the beast. And each year hundreds of kids die because we do not have a cure. It happened again to another local family who just lost their 6 year old daughter after a 9 month fight. When will it stop? I don’t know… but I still feel compelled to do something about it.

Saturday, September 8th marks the three year anniversary of Jeffrey’s death and we have planned a few things to honor his wonderful life. The 5PM mass at St. John’s Church in West Chester will be said in his memory and friends and family are invited. After mass, sometime around 6PM, we will hold a balloon launch at the cemetery, followed by a get-together at our house. Everyone is invited to attend and we certainly remember how Jeff liked a good party, so let’s not disappoint him! BYOB (Bring Your Own Balloons) to the cemetery.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you.


11/23/2006
Happy Thanksgiving!

Another dreaded holiday season is upon us and I wanted to share some thoughts with you. Its been said that Time has a way of healing old wounds. I’m not sure if that is true, but it does have a way of helping to mask them. What I mean is… the hurt is still there and it gets worse around the holiday season, but as time passes we find ways to control the emotions and get through the day.

As the holiday season approaches we find ourselves a little less enthusiastic than in past years. We have no real drive to get out and shop, no drive to put up lights and decorations, and no sense of urgency to want to go and do anything. Yes, it sucks… its sucks everyday that Jeff is not here. We haven’t forgotten him, but we are learning to control our emotions when thinking about him.

We don’t sit around the house and mope around as much as we used to, and we don’t dwell on his passing. Are we moving on?… no, but you can say we are working through it day by day, hour by hour and minute by minute. It’s a slow process and it takes a huge amount of energy.

The recent OSU – Michigan game put a smile on our faces, not so much because OSU won, but because it brought back pleasant memories of a happier time. Picturing Jeff getting all decked out in his OSU gear and ribbing his former teacher and his football coach. It was a good day.

So today we started a new tradition to remember Jeff during these special holidays. We lit a candle and placed it on the table during our Thanksgiving meal with the flame symbolizing the way he brightened our lives. It’s a little thing but it meant a lot to us. Thanks mom!

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/17/2006
Dear Jeffrey,

Happy Birthday Buddy. On this special day my thoughts drift back to the good times and the memories we have of you. It’s a confusing and bittersweet day. On one hand we are happy for Joe that he is turning 15 and on the other we are sad that you and Jennifer cannot celebrate this day with us. This has been a day of mixed emotions since you guys were born. We were always happy for you and Joe but we missed little Jennifer. Now she has her big brother to celebrate her birthday with and I hope you guys are having fun. I hope heaven is everything and more that they say it is and I hope that you will find some way to let us know that you guys are ok. As the years pass it may get a little easier and we will always try to imagine what our lives would be like with all three of you in it.

I want to have you back with us so much that it hurts. I miss everything about you, who you were and what you were to become. I am angry that you were taken away from us and I do not understand the reason why. I want to turn back time, I want to rewrite this chapter in life, and I want another chance…. But I know that is not in the cards. Reality sucks.

When I look at Joe I always think that you should be there with him. When I look at your mom I can see the pain in her eyes of missing you. When I close my eyes at night I pray to see your face. When I see your friends I think you should be with them. When I am at a sporting event, or a school or family function, I know that your physical presence may not be there but I sense your spirit is there and sometimes it makes me smile.

Your mom made some great picture collages of you and Joe. I spent some time last night looking at each and every one of them. Yes, I cried and I laughed as I remembered the memories that each picture brings back. She did a great job on them!

Joe is doing good in school and seems to be falling in love with the game of golf. He uses your clubs and wears your shoes. He hasn’t broken any clubs yet, but give him enough time and I’m sure he will! The recent golf outing we had in your name raised over $20K for your scholarship fund and I hope you got the chance to see what a great day it was. Your baseball team really misses you. Every time they play I think of you and your fastball. I think of how you threw out those base runners when you were catching and I always liked to watch you bat. Man could you hit the ball. I don’t know if you know this but your catcher’s mitt is still used by your buddies. Mark and Zach use it and so does Andy. I wish we could toss just one more time in the back yard. You always made my hand hurt.

Mr. Babcock is coaching the Detroit Red Wings now and is doing really good. Mr. Shaw is in St. Louis with the Blues and they are doing ok. We are planning on going to see them both next weekend. Mike and Brad both wear wristbands in your memory. You have touched them both and they are helping us with the foundation.

Your Buckeyes are doing really good and this might be the year. The Michigan game looks like it will be the biggest game of the year… You couldn’t write a better story…

Jeffrey, you had such a tremendous impact on people that I have a hard time putting it all into words. I remember asking your mom one time if you had any friends… that question has certainly been answered hundreds of times over. You have many friends and have touched people you did not even know.

I have made a promise to myself that between now and the day that we are reunited, I will make the most of my life so that you can be proud of me. I do not want to disappoint you and it is my mission to make something good come from your death. All I ask of you is to watch over us and be there for us in our time of need. Watch over your mother and your brother and help them through the hard times. It’s not easy being the ones left behind… It’s not easy get up in the morning knowing you are not with us… Its not easy dealing with your loss… God help us, it’s just not fair.

I long for a better time. I long to smile and laugh with you again and I swear to you I will do my best. Watch over us and send us signs that you are ok….

So on your birthday I wish you peace, love and eternal happiness. I miss you buddy, I really miss you.

I Love You …. Dad

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you.


9/15/2006
Pictures of the Balloon Launch have been added to the Photos Section of the website. Thanks to everyone that attended, we appreciate the support you continue to give us.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


9/7/2006
I have two thing quick things to tell you...

1. Joe had his MRI today and everything is fine. Because the concussion was on the severe side his physical activity will be limited for another 6 weeks. Cindy and I are happy with the news, but Joe wasn't. He wanted to play baseball, but that isn't going to happen for a while.

2. It's BYOB (Bring Your Own Balloon) to the Balloon Launch on Friday. We will start at 5PM. It will be informal and if anyone wants to speak, they will be given the opportunity before we send the balloons to Jeff. The pool party will follow immediately after the balloon launch. Food and Drinks will be provided.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


8/27/2006
Enduring the Pain

The two year anniversary of Jeffrey’s death is less than 2 weeks away. Sept 8th is forever etched into our brain. We dread it and we want it to be over. It’s true what they say about the second year being harder than the first. It’s hard to explain, but the loss hits you harder because you realize this really happened and he’s not coming back. You rack your brain searching for a happy memory or trying to remember what his voice sounded like or how great it would be to get a big hug. We look for signs, we wonder what life would be like with him still in it and we find ways to control our emotions, but the pain is still there, just below the surface waiting to explode. We can never “move on” or “get over it” but we can find ways to “move with” the grief and begin the transformation of life without our son.

On Friday, Sept 8th we plan on attending mass at St. John’s Church at 8:30AM, followed by a visit to the cemetery. The Balloon Launch is scheduled for 5PM that night at Jeff’s tree at Freedom Elementary followed by a get together at our house for anyone that wants to come over. Jeff always liked a party, so that’s what we are doing! We will also find time to reflect on all the wonderful things our young man accomplished in his short time on this earth and the impact his life has on those left behind. Get out the tissues…

On an upbeat note… Several weeks ago Cindy and I attended a conference in Las Vegas that was attended by other families that lost their child to the same tumor. We met people that have walked our path and shared in the misery this tumor brings. We listened to a speaker named Tom Zuba (www.tomzuba.com) whose life has been filled with overwhelming grief due to the loss of his wife, his daughter and his son. He is an incredible speaker and has found unique and positive ways to share his story. The event allowed us the opportunity to get to know each other better. Most of us had communicated via email or by phone, but very few of us had the opportunity to meet face to face. I was given the opportunity to talk to these parents and introduce them to what our foundation is doing to help make a difference. The trip was well worth it and we look forward to getting together again. We consider this part of our healing process. For more details on the event you can check out the JTHF website. (www.jthf.org)

Last week we had a little scare. Joe was playing in a pick-up game of baseball and got hit on the side of the head with the ball. He wasn’t wearing a helmet and yes… we have since talked to him about that. He came home complaining of a bad headache, but otherwise seemed alright. The headache didn’t go away and the next day we decided to take him in to be checked out. It’s a long story but let’s just say that there was lots of waiting around and indecision on the part of the doctors, which lead to some very frustrated parents. We arrived at Children’s at 5PM and Joe wasn’t admitted until 1AM in the morning. Joe spends the night in room A714… the same room his brother was in… enough said…

He got a couple of CAT Scans and was seen by several doctors. We were told the scans showed he had some damage that they called a sub-dural hematoma with intracranial hemorrhaging (translation: bad concussion) and he needed some rest. They want him back on Sept 7th for a MRI, but no sports, no physical activity, etc until then. The bummer for Joe was he had to miss his first day of high school at St. X. The good news is he’s feeling better and as I write this update he’s outside playing with his friends and I have to frequently stop and tell him to take it easy. So, that’s the short version of the story… but as you can imagine there is so much more that went through our minds as we waited in the ER.

We took an Alaskan cruise this summer with my parents, my two sisters and their families, that included a tour of Denali National Park to see Mt. McKinley, train rides, bus rides, tours, shopping, helicopter rides, hiking on a glacier, whale watching, etc. We had a great time and took hundreds of pictures and hours of movies. When in Vegas, Cindy and I gambled a little, shopped a little and ate at some great restaurants. We’ve been to the lake a few times and enjoyed our new wave runner, visited with friends and generally had one of the summers that Jeff would have liked…

Cindy started a new job this week as the school nurse at Adena Elementary in the Lakota School District. Its part time but it’s a good sign and she’s ready to get back to work. The Golf Outing is scheduled for October 2nd at Beckett Ridge. Robert Jackson is hosting the event this year and we hope for good weather and a big turnout. Also, thanks to Jeff’s cousin Emma for organizing a garage sale that raised $652 for JTHF.

One more thought before I close out this update… One of the biggest fears that a parent who has lost a child encounters, is the fear that people will forget about their child. When talking to other’s we meet along this journey, they say the same thing. So it’s ok to talk about Jeff to us, because it does make us feel better to hear his name rather than having him ignored, even if it does trigger a tear or two… its ok. And thanks to everyone that shared what we call a “Jeffrey Moment” with us, from what we can tell he’s been busy this summer!

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you.


5/30/2006
A Message to the Class of 2010

Last week Cindy and I had the honor and the privilege of attending the Lakota Ridge Junior School Year End Awards Ceremony. The event was held at Lakota West High School in the same auditorium where only a week earlier I watched Cindy receive the Barb Bossu Volunteer Spirit Award*. It was fun to see so many familiar faces along with their proud parents. These kids are special to us because they knew Jeff and it makes us proud to see them turning into such fine young men and women.

We fought back the tears when Jeff’s name was mentioned early in the ceremony by Sara Dittrich and Lauren Mae Mullins. They talked about how they miss their former classmate and about how they got involved over the past two years with fundraising activities for the Foundation. It made us feel good to know they have not forgotten Jeff and wanted to do something special to remember him. Also, it brought back memories of other individuals that found unique ways to remember Jeff in the short time that he has been gone.

Cindy and I were the proudest parents in the building when Joe walked across the stage to pick up his academic award an then again to receive a department award. It makes us happy to see what he has accomplished despite everything that has happened. He is a continuing source of pride for us. But at the same time we fought back the tears because we also pictured Jeff walking across that stage. We imagined the shy little smile he would have had on his face as principal Rudder handed him the certificate and shook his hand. You have no idea how much he wanted to join his class at Ridge. His book bag is still packed and ready to go in his room. Even though he never attended Ridge his presence was felt that night. I’m sure we will feel the same thing many times over the next four years before this class graduates from high school.

Now the message…. You guys are special to us for many reasons. We appreciate the support you gave Joe after he suffered the loss of his brother. We appreciate the support you give the Foundation and we love how you continue to find ways to remember your former classmate and friend. Losing a classmate and friend is hard, but losing a brother and/or child is even harder.

Many of you guys have been together since LECC. You grew up together, you shared elementary school experiences together, some of you may have went to different schools and played against each other in various sporting events and competitions, but you shared a common bond of friendship. You established long lasting relationships that will continue well into high school and beyond.

Now your journey will take many different paths. Some of you will go onto the Freshman School, then onto Lakota East or West, some will go onto one of many private schools and some of you will move out of the area. As you enter your high school years, keep Jeff somewhere with you. Use him as a source of strength to help you overcome adversity. Be generous with your time, positive with your attitude and make choices in your life that will make your parents proud. Jeff’s motto was “Never Give Up! Set goals that seem impossible, with perseverance you can see how easy they are to achieve.” That sounds like good advice to me.

By the time the Class of 2010 is ready to graduate high school, the JTHF Scholarship program will be in high gear. We have already set up an endowed fellowship at Ohio State and we are working hard to have sufficient funds to begin awarding individual scholarships to deserving students. Who knows, maybe JTHF can touch your life the way you have touched ours.

We will continue to grow the foundation with top notch fundraising events to meet our goals and we want you to remember that we are always looking for volunteers to help us. JTHF offers numerous opportunities to fulfill community service requirements and we hope you will think of Jeff when deciding when and how to donate your time.

As you move onto the next phase of your life don’t forget to drop us a line or send us an email to let us know how you are doing. Maybe we’ll see you at the annual balloon launch at his Freedom Tree, or at a Friday night football game, or at a local restaurant, it doesn’t really matter… just say hi!

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)

* The Barb Bossu Volunteer Spirit Award is given by each school in the Lakota district to people that volunteer their time, in recognition of their positive spirit and dedication to the students, and their generosity of time and talent. It is given in memory of a dedicated Lakota parent, Barb Bossu, whose untimely passing from cancer in 1989 was mourned by all in the Lakota school community.


3/8/2006
Eighteen months ago today, at approximately 10:30 in the morning, Jeffrey passed away. Worn out from the fight and surrounded by family and friends, he was forever free from the pain… Do me a small favor today in honor of Jeffrey… Give your kid a hug for no reason or cut them a little slack if they do something foolish. Smile and do something nice for somebody today… that wasn’t too hard was it?

I’ll share something with you…Writing these updates is difficult and emotional, but it helps me deal with my grief. Some people like to talk and some people are quite, some like to write and some just want it to be over. We all seem to deal with our grief in our own separate way. We lose track of time, and pieces of our lives seem to be on hold, but other things continue on as if nothing has happened. It’s a strange feeling to lose a child, one that is extremely hard to explain. Through our efforts with the foundation and through participation in various support groups we meet others that share these feelings. We can see the pain in each others eyes, along with the emptiness and loss, a life consumed by grief. We follow other children on the internet and we are consumed by their stories. As we read about these wonderful children we know what’s next, we read between the lines and we feel the pain all over again. We cry when another child loses their fight and we try to reach out to the parents. You experience a sense of loss that can never be overcome. Then you have a good day and you start to feel guilty. It’s a vicious cycle of grief, emptiness, happiness and guilt.

Its been several months since the last update and a lot has been going on at the Hayden house, so here’s what’s new…

Joe is doing fine and in January he received word that he was accepted into St. Xavier High School. It’s the happiest we had seen him in over a year. He had a great time during his visit there. St. X will be a good change of pace for him and he is looking forward to his freshman year. He is active in sports and continues to do well in school. He is growing like a weed and it seems Cindy is always buying new clothes to replace the ones he is growing out of. We are proud of the young man he is turning into.

In February we took a weekend trip to Minnesota to visit friends. Joe had some Timberwolves tickets that he won and he got to see his first NBA game. Of course the Timberwolves lost, but that didn’t matter. He took Paige to the game and got to sit in some pretty good seats, while my friend Ron and I sat up in the nose-bleed section. We shopped and ate at the Mall of America, visited with the Fosters and the Filzens, and got to see both of their new houses. One thing that stands out when you visit Minnesota in the winter time is…. It’s cold… plain and simple, no getting around it, chills you to the bone cold.

Its been busy at work and my travel schedule has been crazy. It seems like I’m always on the run to one place or another. Recently, Cindy and I had the opportunity to visit the Babcock’s in Detroit. I attended some planning meetings for a Dinner event the foundation is putting on and Cindy got to spend time with Rene. During my visit I got the tour of Joe Louis Arena and took some pictures of the Red Wings locker room and training facility.

Things are going great with Jeff’s foundation. The Dinner and Auction in January was a huge success and we collected over $50,000 for a great cause. We have a Dinner planned in April in Detroit and the Walk is scheduled for May. The JTHF website has been updated with new sections, more content and we were happy to get the online resource center up and running. More important to us is the creation of an endowed fellowship research position at Ohio State in Jeffrey’s name. Announcing this at the Dinner makes good on a promise we made to Jeffrey before he passed away. You have no idea how good this makes us feel and we thank everyone that has helped us achieve this goal. I know Jeff would be proud to know that his name will permanently be a part of OSU and will someday play a part is finding a cure for this horrible disease.

Cindy, Joe and I want to take this opportunity to thank everyone that has helped us on our journey. Your continued support is greatly appreciated and we enjoy hearing from our friends around the world.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


12/24/2005
Merry Christmas!

Cindy, Joe and I wanted to take this opportunity to wish everyone a Merry Christmas and a Happy New Year! The holiday season gives us the opportunity to spend quality time with family and friends and it’s a great time to reflect on our accomplishments and give thanks. I would like to thank everyone that has helped us on our journey and update you on what’s going on with the Hayden Family.

This will be our second Christmas holiday without our brave young man. We miss him with every fiber of our being and we still struggle to contain our emotions when we think about him. Overall we seem to have more good days than bad days. I guess that’s a good sign. Joe is doing well in school and he continues to be a source of pride for Cindy and me. He has been thinking about which high school to attend and he visited both Moeller and St. X during the past month. He’s playing basketball for the St. John’s 8th grade team and they are doing pretty good. Baseball practice starts on January 9th… yes I said baseball. Joe’s coach wants to get a jump on the conditioning and take some extra time to get the boys ready for a 40 game schedule (ouch).

Last Tuesday we completed the one year program offered by Fernside, which is a support group for families that have lost a child. Their program has a special emphasis on helping the sibling deal with his or her grief. We met a lot of great people and shared stories about our kids and our experiences. We made attending a family priority and we rarely missed a session. Being with other families with similar experiences let’s us know that we are not alone. Even though the circumstances that caused our children’s deaths may be different, the feelings, pain and emotions we go through are common. However, after a lot of thought, we decided it was time to take the next step in our journey and move on. Special thanks are in order for the entire Fernside family for everything you do, we will miss you guys!

On a business note, things at work are going well and I even put Joe to work over his Christmas break. The building expansion project is nearly complete and orders for our products are picking up. With increased business comes increased travel. I still enjoy traveling and in 2006 I plan on taking Cindy and Joe on a few of the trips with me. Hopefully Joe will see this as an opportunity to experience different cultures and broaden his horizons.

Cindy still takes her daily walks with Maggie (weather permitting) and stays in great shape. Her days are spent running errands, assisting with school functions, helping me with some projects, getting Joe to all of his practices and games, bowling and visiting with friends. Much of her free time is spent working on projects for the Foundation.

Speaking of the Foundation… Great things are happening. We have a fundraising Dinner and Auction planned for Saturday, January 14th at the Manor House in Mason. Tom Gamble from 1360 Homer will be our emcee, along with several celebrities and honored guests. We have over 125 items to auction off from jewelry, to sports memorabilia, to travel packages and mystery bags. The proceeds will benefit our scholarship fund and we plan on making a big announcement at the dinner regarding our first big project. You can check it out on the JTHF website at www.jhf.org. We want to thank our friends, family and all the volunteers for helping us and for everyone that takes the time to make a difference in the fight against pediatric brain tumors. Special thanks to Mike Babcock for taking the lead in helping raise awareness about this deadly problem.

Before I bring this update to a close, Cindy, Joe and I want to recognize a special lady. Her name is Trudy, but we only knew her as Nanny. She passed away shortly before Thanksgiving at the age of 91. She helped us understand that a person can overcome adversity and live an extraordinary life even after seeing the face of evil up close and personal and having everything that is dear to her taken away. Nanny was a Holocaust survivor. In her lifetime, she saw the worst and the best in people. She made sure her story was passed down to the next generation so that we will never forget. She knew firsthand about the price of freedom and the value of hard work. She leaves behind a wonderful and loving family that has been instilled with her core values. I consider myself fortunate to have met her and to have heard her story. It has changed me and helps me prioritize what is really important in this life. God Bless you Nanny!

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this deadly disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


11/8/2005
One year and two months after his death we can finally lay our son to rest. Jeff’s headstone was placed at his gravesite today and I couldn’t decide if I should cry or smile, so I did both. I cried because I miss him so much and because the placing of the stone signifies the permanence of it all. I smiled because it looks absolutely wonderful and we think he would be pleased. A lot of credit goes to Cindy for picking out the pictures and working with the artist to get it just right.

As usual, I picked the wrong week to travel out of town, but listening to Cindy’s voice on the phone told me that they did a great job. Later in the day I received some pictures via email to confirm what I already knew. I can’t wait to see it in person and it will be the first stop I make when I get back.

So today rather than ramble on I will let you judge for yourself. It’s true that a picture speaks a thousand words. You can visit the photos section and look under November 2005. Thanks Bethie for sending the pictures.

Remember… Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/27/2005
I must have started writing this update at least a dozen times and composed at least a dozen more in my head. I even finished a few of them, but they just seemed too personal to post on the website. So here we are, 10 days later, still procrastinating, still waffling, still undecided on what to post. After going back and forth, we decided to go with this one…

Happy Birthday Kids

October 17th has always been a bittersweet day for us. On this day 14 years ago, at 6:30am in Walnut Creek California, Cindy gave birth to three beautiful babies. Some of you may not have realized that Joseph and Jeffrey were actually surviving triplets, because it’s something we just don’t go around talking about. Our three little miracles, Joseph, Jennifer and Jeffrey, all weighed about 4lbs each and minus a few minor issues, all appeared healthy at birth. However, within hours a serious situation started to unfold and by the end of the day we had lost little Jennifer. Her death was the result of complications from a high risk birth. The day that had started so perfect had turned so tragic. It all happened so quick that, quite frankly, we were in shock at what had transpired. It was, and still is, an emotional rollercoaster.

For twelve years we celebrated Joseph and Jeffrey’s birthday, while at the same time quietly and privately mourning the loss of Jennifer. Last year we lost Jeffrey shortly before his 13th birthday and I admit we were in shock for several months after his passing. That Birthday was difficult, but this year October 17th hit us harder. There was no big party planned for Joe, just a private family gathering attended by a few friends and family. I’m sure he feels cheated, I’m sure he wanted to celebrate with his friends, I’m sure he had bigger plans, but the reality of what that day means to us made it extremely difficult for Cindy and I, and throwing a party was out of the question. I’m sure Joe understands.

For our family, October 17th has always been a day to celebrate and a day to mourn. For those people that have visited the cemetery recently, you noticed that Jennifer is now laid to rest near her big brother. I’m sure this might have caught a few people off guard, but we felt this was the right thing to do. Soon the new headstone will be placed at Jeffrey’s grave and we hope this permanent marker will do justice to honor our young man’s life. We have been told it may be a few months more before it is ready… all I can say is it must be one heck of a stone to take 6 months to get in!

We are not the first parents in the world to lose a kid and unfortunately we will not be the last. We realize this and we understand that people deal with this sort of thing differently. Cindy and I deal with it on an individual basis, but the positive thing is that we are dealing with it, we are not ignoring it and we know it will take more time before we can accept it. We will never “get over it” and we will never “move on” so you might want to drop those things from any conversation you have with us about it. Don’t misunderstand what I am saying…we want you to talk to us and share your feelings about Jeff and what his life and death means to you, ignoring what happened is not healthy for anyone.

The passing of a child has its own set of unique circumstances and no two are alike. Jennifer’s passing was different than Jeffrey’s and they came at different stages in their lives. Jennifer’s death was so sudden, so unexpected and much too early to have created any kind of long lasting memories. Jeffrey’s death came at a time when he was developing into a fine young man. His personality had been defined and his impact on family and friends was much stronger. We have twelve years of happy memories to hold onto and we are blessed to have had him in our lives.

We miss them both, we dream of what they could have been, we miss having them here and we mourn the things that will never be. That’s the hardest part of losing a child, you know…the part about those things that will never be. We have the past to hold onto and those memories will be cherished forever, but the tears begin to flow when we think about the wonderful lives that could have been.

Life is precious. Life is a gift. Enjoy every waking moment and cherish every memory because you never know when it will be taken away. Our work with the Foundation continues and we hope that someday our efforts will eliminate this disease from the planet.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


9/8/2005
Send Me a Sign

I am writing this update at the end of a very long and emotional day, which unfortunately was preceded by a sleepless night. However last night was not spent like those of a year ago; searching the internet for answers, wondering if we would get a miracle, tending to a sick child or looking for HOPE… rather it was spent wanting those nights back, wanting another chance to hug my kid, wanting our family to be together again, wanting more time to find a cure, wanting it all to be a bad dream... Then morning comes and it hits you like a freight train and you realize it was not a dream, he’s gone and he’s not coming back. Bam… the one year anniversary of his death is here.

We had a simple day planned; mass in the morning, followed by a balloon launch at his tree. We planned on a quiet day at home with time to reflect on Jeffrey’s life, time to shed some tears, time to revel in his accomplishments and time to smile about the wonderful memories he left us. The mass in the Chapel was standing room only, which I understand was an issue for some of the early morning regulars. I say this with a smile on my face, because so many people fail to understand the impact Jeffrey made on people. I didn’t understand it at first, but I do now. Don’t worry regulars… things will be back to normal tomorrow.

I wasn’t surprised to see so many people at the tree for the balloon launch, in fact I have come to expect it. He continues to be part of so many people’s lives that I can’t help but smile. We love hearing about your favorite “Jeff” stories and how his life has changed others. It was a perfect day. Watching those balloons ascend to the heavens was a brilliant site to behold and I’m sure Jeffrey read every note that was written to him today. I hope to have a few pictures posted in the next couple of days.

So, that’s how our day started, then Joe went to school and Cindy and I went to breakfast with a few friends, then came the quiet time. You ask yourself…How is one supposed to act on the anniversary of the death of a child? Should one be sad, should one be happy, should one be angry, or should one be depressed? Well, I guess you could say it was a mixture of all of the above. You also realize that you are not alone in your pain. His friends miss him, his teachers miss him, his cousins and relatives miss him, his grandparents miss him, his neighbors miss him, complete strangers miss him, his team-mates miss him, his coaches miss him, and yes… his brother misses him more and more each day. I will give him some credit… the kid got around.

In the evening we went to visit our old neighbors and they had a nice remembrance ceremony and balloon launch that was attended by everyone on the cul de sac. As dusk set in we went as a family to visit Jeff’s grave. It can be a little eerie in the cemetery at night, but tonight it was peaceful and calm. As we were standing at his grave looking at all the flowers that had been placed by well wishers, something special happened. We spotted a lone deer standing on top of the hillside looking down at us. Its silhouette was framed by a warm blueish-grey sky. Then it started running along the road before heading down the hill, when all of a sudden it stopped and turned to look our way for a few moments before bolting through the gates and into the open field across the street. We just looked at each other and smiled, because ever since Jeff’s death the deer has been a symbol of his presence.

The deer is free to room the wilderness, unencumbered by boundaries, as now Jeff is free of his disease that was so confining. We have seen the lone deer several times and in various places. It stops, pauses and stares before running off. Is this his way of sending us a sign? Believe what you want…

Like I said before, its been a long day and it’s getting late. Our hearts are heavy with sadness as we remember a life that ended much too soon, but we find comfort knowing that we are blessed with so many supportive family and friends. You guys know who you are. Just remember, we have someone special watching over us as our journey on Earth continues…

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


9/1/2005
A Time to Remember

September 8th, 2005 will mark the one year anniversary of Jeffrey’s passing. It’s a sobering time for our family and everyone that was fortunate enough to have known him.

A balloon launch is planned at Jeffrey’s Tree on Thursday, September 8th, 2005, which is located in front of Freedom Elementary school in West Chester at 7:30am. Anyone that wishes to attend is asked to bring a balloon or two since we have no plans to provide balloons at the event. The ceremony is planned to last about 15 minutes so that parents can get their children to school on time. Fr. Mark from St. John’s will say a few words followed by anyone that wants to speak. Family and friends are also invited to attend mass at the chapel in St. John’s Church, which is scheduled to start at 6:30am. No other events are scheduled and we plan on spending a quite day alone with our family.

Over the past year this disease has claimed thousands of lives and researchers are still desperately looking for a cure. The Jeffrey Thomas Hayden Foundation was created to help other parents and children affected by pediatric brain tumors. We hope that our son would be proud of what we are trying to do and we hope that our efforts will lead to a cure.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


8/8/2005
Eleven months today and it still seems so unreal. I know you have all heard me say the same things over and over about emotions and feelings and time standing still, but that’s the reality of what we are dealing with. We spend time talking to other parents that are going through similar journeys and reading updates on the countless websites that have been set up for other children that are fighting this monster. Few, if any, ever win, and that’s what’s rips your heart out. Why must it be this way, why can’t it be stopped?

The one year anniversary on September 8th is going to be tough for our family. No longer will we be able to look back and remember what Jeff was doing at that time last year. Reality sucks.

This past weekend was our annual church festival. It brought back fond memories of the famous pulled pork sandwich from one year ago. For those of you that haven’t heard the story, here it is… We were walking around the festival deciding on what to eat, when we came across the pulled pork sandwich booth. Jeff decided he had to have one and so for the next 30 minutes we sat and watched him meticulously devour this huge sandwich. Oh, did I forget to mention about the “extra” BBQ sauce that he had to have on it and the potato pancake and ear of corn that enhanced this feast? Jeff’s thinking was that there is no need for a napkin when you have a white t-shirt. He loved it and hummed his way through every enjoyable minute of it. The stuff was everywhere and Cindy cringed at the thought of him touching anything in her car. I remember it like it was yesterday and it always brings a smile to my face when I think about it.

But one year ago also brings back some not so pleasant memories. After the church festival last year we packed up and went to Kiawah Island, with every intention of playing golf and hanging out at the beach. The high hopes of a happy family vacation were quickly replaced with the stress of dealing with his deteriorating condition. Upon our arrival his condition took a turn for the worst and he started having some mobility issues that required a wheelchair to assist him in getting around. We cut the trip short and returned home. What happened over the next month was horrible as we watched the life being sucked out of our child by this beast. But even as things got worse, we never gave up hope for a cure and we never stopped fighting and Jeff never complained. He just dealt with things as best he could. I am forever proud of him for that.

Also, this time last year Jeff was anxiously waiting for golf tryouts to start for his school team. He watched the Golf Channel everyday and practiced all summer by hitting thousands of balls at the range and in our back yard. Unfortunately he never got the opportunity to show the coach what he had. The beast took that away from him. This year his brother Joe is giving it a try. Whether he makes the team or not is not the important thing, it’s that he has the opportunity to try. And that is the real lesson here isn’t it? Remember that as you give your kid a hug tonight.

There have been so many people that have helped us that I just wanted to say we appreciate your continued support as we deal with our grief. Thanks for being there for us in our time of need. Thanks for listening when we want to talk and understanding when we just want to be alone.

Last month I mentioned that we received two poems from Jeff’s friends. This month I would like to share with you one that his friend Rocco wrote.

“TOUCH” – by Rocco Baldasare

Jeffrey Thomas Hayden
Baseball was his game.

Jeffrey Thomas Hayden
Baseball was his middle name.

Jeffrey Thomas Hayden
Stepped up to bat one day.

Jeffrey Thomas Hayden
Hit it all the way.

Jeffrey Thomas Hayden
Was unable to walk the bases.

Jeffrey Thomas Hayden
Was carried by familiar faces.

Jeffrey Thomas Hayden
Had scored the winning run.

Jeffrey Thomas Hayden
We are proud of what you’ve done.

Jeffrey Thomas Hayden
We miss you oh so much.

Jeffrey Thomas Hayden
Still has that magic TOUCH.

Thanks to Rocco and all of the gang that were there that day in Kyles back yard. You put a smile on his face that day!

Reminder… The JTHF Golf Outing is scheduled for Monday, October 3rd at Beckett Ridge Country Club. Details about this event can be found on the JTHF website at www.jthf.org.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


7/10/2005
Ten months have gone by since Jeff’s passing. What can I say that I haven’t already said… It’s just not the same anymore and our lives have been forever changed. We are managing our emotions a little better, but it’s always there, the sadness of missing him, the feeling of overwhelming grief, the thought that it really happened and it’s not just a bad dream that will be over soon.

We are different people than we were a year ago. We see things differently and we don’t take things for granted. I’d like to think we are a little more generous with our time and money and that we have a better understanding of life and death. We continue to attend support group meetings and we have met so many people that have suffered a loss and we find that we are not alone on our journey. We help each other deal with our emotions and feelings and we understand the grief, depression and loneliness that we all experience. Every day brings new challenges and we lean on each other to overcome them. We visit his grave often, sometimes shedding a tear, sometimes standing there in silence and sometimes we just smile and think of a funny memory and wish that he was here with us again.

It’s there everyday, the sadness, just waiting for a trigger to release the floodgate of emotion that lies just below the surface of our facade, waiting for one thought or memory, waiting for the meltdown, one trigger away from collapse.

Time has no meaning to us. We are caught in a time warp. It’s a weird feeling and it’s hard to imagine that he has been gone for 10 months. Certain memories are so vivid and realistic that it makes you think it happened yesterday. At this time last year we were returning from a visit to Canada and Niagara Falls. It was a good trip for our family and it was a good time for Jeff. But it was also the time his tumor started to act up again. He started having some headaches and then he started having spells of double vision. We went to see the doctor and he confirmed our worst fear that the tumor was on the move.

Jeff got mad at the news. He stormed out of the room. Why was this happening? In his mind he had done everything we had asked him to do. Why wasn’t the treatment working? As parents we felt helpless because we had no answers, we had no secret potion, we knew this day would come and…boom…here it was, smack in our face. This is it. I remember that day like it was yesterday, I remember the room, the people, the sad faces, the words, the box of tissues, the beepers going off and the piece of paper with the options to consider for the next step in our battle. It was horrible.

After that day in the hospital he never really complained, he never cried and he just dealt with it the best he could. He played some golf, played with his brother and his friends and did his best to have some fun. How’s that for a lesson in life from a 12 year old?

Jeff touched the lives of so many people. He touched mine and changed me. I don’t know what the future holds for our family, I don’t know if this disease will be cured in our life time, but I do know that we are going to do everything we can to help make a difference in the fight against pediatric brain tumors. We may ruffle some feathers and bruise some egos along the way, but something has to change and these kids need to stop dying.

We are trying to resume our lives. We still like to have a little fun, we still like to have people over, we still like to get out every once in awhile, we still like travel, but it’s not the same and Jeff is always in our thoughts. We wish he could have seen the new pool. I think he would have liked it. We talked about it for so long, I’m just sad that he never got to jump in and have fun.

One thing that makes us feel good is when someone takes the time to tell us a funny story or share a special memory about Jeff. It means they still remember and haven’t forgotten their friend. Last week we received two very special poems that were written by some of Jeff’s friends. I want to share one of them with you, and I promise to share the other one in a future update…

Everybody’s Friend – by Joseph Honkomp

He was everybody’s friend
No matter who you are

He had an awesome personality
Always kind, never harsh

Always lending a helping hand
For any of those in need

If you needed help
He was always there

He was unimaginably smart
Always top in class

He was there so much
It’s a shock that he’s gone

I remember that day
It seemed everybody was in tears

Did you hear? Did you hear?
There were whispers all around

It was on the announcements
So everyone could understand

The funeral was almost unbearable
All the memories came flooding back

Why did he have to go so soon?
Why did he have to leave us?

I will always miss him
I will always miss Jeff

Thank you Joseph.

Reminder… The JTHF Golf Outing is scheduled for Monday, October 3rd at Beckett Ridge Country Club. Details about this event can be found on the JTHF website at www.jthf.org.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


6/8/2005
Nine months today and it still hurts. In a way it’s become harder to write these updates because as each day passes we realize that time will never heal all of these wounds. We seem to be dealing with our emotions a little better, but what does that really mean? We don’t have the answer to that one.

One thing that we are proud of is that we finalized the plans and ordered Jeff’s headstone. It will take 4-6 months to get, but we think the wait will be worth it. Of course we had to custom order it, because if you knew Jeff like we knew Jeff, then you would understand that an “off the shelf” version simply would not do. Although we have assembled quite an assortment of items at his grave to help remember him by, nothing can take the place of a permanent marker. I will keep you updated on when his headstone will be in place.

We are happy to report that the first annual Jeff’s 5K Walk/Run was a huge success. The event, which was held at the VOA Park in West Chester, raised nearly $40,000 for the scholarship fund. Pictures and updates can be found on the JTHF website along with a listing of all the sponsors that contributed money, goods and/or services. Now the planning begins for the Golf Outing in October, which will be held at the Beckett Ridge Country Club. For more information, or if you are interested in helping out, please go the EVENTS page on the JTHF web site. Jeff’s foundation is only nine months old, but with the help of family, friends, complete strangers, well wishers, volunteers, celebrities, athletes and local businesses, we have raised over $80,000 for our various programs. THANKS!

On a more serious note… A friend sent this to us and I want to share it with you. It is a poem that was written by a 12 year old (7 years post transplant) for school. It really says it all much more eloquently than I ever could and gives insight to what a child with cancer is thinking.


If You Haven’t Had Cancer - by Travis Yon

If you haven’t had cancer, you don’t know attention. You can’t know attention. The constant questions and the feelings of being surrounded. The “Does this hurt,” and the “Can you feel that.” You are never alone. There is always someone watching you. Whether it’s your doctor, nurse, mom, dad, brother, or sister, grandpa, or grandma. You are always supervised. If you haven’t had cancer you don’t know attention.

If you haven’t had cancer, you don’t know medicine. There is no way you can know medicine. The continual injections, pills, swallowing, and IV’s. The charts and keeping track. The discomfort and vomiting. The exhausting chemotherapy and radiation. The 75 medicines a day. If you haven’t had cancer you can’t know medicine.

If you haven’t had cancer you don’t know pain. You can’t know pain. The injections, the radiation, and the chemotherapy. Pure torture. Fear. That is pain. It’s the worst. If you haven’t had cancer, you don’t know pain.

If you haven’t had cancer, you don’t know long-term. You can’t know long-term. The long, boring hours of just waiting. Doing nothing. Pathetically trying to brainstorm ways to amuse yourself. Waiting for it all to be over. Waiting for the results. It is grueling. If you haven’t had cancer you don’t know long-term.

If you haven’t had cancer you don’t know joy. You can’t know joy. The joy of surviving, making it, you’re done, sprung, released, out, through. If you haven’t had cancer you don’t know joy…

While on Earth, Jeff never experienced the elation and joy of beating his cancer and being listed amongst those very few and fortunate survivors. Even though we knew the odds, we held out hope until the very end that he would be counted amongst the lucky few. This is the thing that hurts the most, that after enduring all the pain, and all the treatments, and all the discomfort, he never got to celebrate his victory. We hope and pray that he is celebrating in Heaven and that he is free from the pain, the chemo and the constant attention that comes with battling cancer. We pray that other children and their parents will not have to endure this same torture and we are trying to do our part in making a difference in the fight against pediatric brain tumors.

Our plan is simple…Share information and help educate parents and medical professionals on the best available treatments for their children. To learn from those that have gone through this process before us and help others overcome the obstacles that have prevented the medical community from making progress in this battle. The war on cancer is slowly being won, one battle at a time. As parents, we can only hope that our son did not die for nothing and that something good can and will come from this.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


5/9/2005
Happy Mothers Day… These three words have taken on a deeper and more somber meaning for us because this year Mother’s Day just happened to fall on the eight month anniversary of Jeff’s passing. Our day started out with a trip to the cemetery, followed by the normal visits with family and friends. The pain of missing him is still very fresh in our minds and emotions boil over at the thought of him not being able to give his mom a big hug and a kiss on her special day. It doesn’t seem to get any easier with the passing of time and it’s still hard to believe that he is gone.

We are close to finalizing the look and wording of Jeff’s headstone. I can’t even begin to describe the emotions that this task has put us through, but it is time to properly mark his grave and give him the honor and respect he so deserves.

Lost is a good word to describe how we feel at this point in our journey. We are still looking for ways to deal with our feelings and emotions. Some days are good, some days are bad, but not a day goes by that we don’t think of him. Sometimes we think of a happy memory that makes us smile, sometimes we think of everything he went through and it makes us sad. We try to make sense of it all, but answers are few and far between. So… we get up every day and give it our best, that’s all we can do.

So many lives have been touched by this kid that I have lost count. I wish that he was still here, I wish that we could turn back time, I wish that we could have found a cure, but most of all I wish that something good will come from all this pain. To that end, I met with his doctor last week to discuss his involvement with the Foundation and asked him to help me get the Pediatric Brain Tumor Resource Center off the ground. While sitting in his office I noticed a picture of Jeff hanging on his wall. It was the picture of Jeff with a plunger stuck to his head and a big smile across his face. That’s the way he remembered Jeff… happy, clowning around and not worrying about things out of his control.

The Foundation is the perfect therapy for us and we are extremely grateful to our friends and family that have been so generous with their time and money. Our first big fundraiser is coming up in a few weeks and we are hoping for good weather. Jeff’s 5K Walk will be held on May 21st at the Ronald Reagan Voice of Freedom Park (VOA) in West Chester. The details can be found at www.jthf.org. The funds raised at this event will go toward establishing a scholarship fund to help other children that have been affected by this horrible disease. We have a few other exciting projects in store for the Foundation and I’m sure you will be pleased with the direction that this thing is heading.

I said this last time but I want to mention it again, we love to hear from our friends and family, so don’t be bashful to email or call us. Also, don’t be afraid to let us know what’s happening in your life and don’t be afraid to mention Jeff’s name or talk about him. He is a part of us that will always be there and we have no intention of ever putting his memory aside.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


4/8/2005
Today marks the seven month anniversary of Jeff’s passing. It seems like yesterday that we were hitting golf balls together and yet it seems like forever, all at the same time. I apologize for the lack of updates but I have been focusing my efforts on the Foundation and updating the www.JTHF.org website. Emotionally and physically not much has changed since the last update. We think of Jeff constantly and we continue to have good days and bad days. We are still struggling with the wording for the headstone, but I’m sure it will be resolved when the time is right.

We appreciate the little things a lot more these days and we find ourselves falling back into some of our comfortable routines. We think about things in a more spiritual way and find ourselves asking questions and seeking answers about the after life. It’s a daily struggle to say the least, but I can carry on a conversation today about things I would have never dreamed about discussing a couple of years ago. On the outside we seem the same, but on the inside, this experience has very much changed each of us.

On a happy note, we went to California for spring break and visited with our friends in Anaheim. We visited Disneyland and spent some time at the beach, but mostly we just hung out at the Babcock’s and enjoyed the beautiful weather and relaxed around the pool. Joe, Taylor and Allie learned some new curse words when I dropped my camera in the parking lot… old habits are hard to break. Mike and I got to visit with the people involved in our TumorTracker project at Children’s Hospital of Orange County (CHOC) and I am happy to say this thing is moving full speed ahead.

The trip was hard in one way because it was this time last year that we traveled to Orange County, California as a family to seek the opinion of an expert at CHOC. We still had HOPE that a cure would be found. It’s hard to escape the memories of that visit and the fun the boys had hanging out with Coach Mike and his hockey players, playing with friends, shopping, swimming and just being kids. Now we treasure those precious family moments and long for their return.

Thanks to the Summe family for watching Maggie while we were gone. She was spoiled and now I think she needs to be taken to a shrink… (inside joke)

Fundraising activities are in full swing for JTHF. Thanks to Kate Miller and her 5K Walk committee for all the time and energy being spent to make this event a huge success. Jeff’s Walk is scheduled for May 21st at the VOA Park in West Chester. Details can be found at www.jthf.org. Also I want to personally recognize the efforts of Mike Babcock and thank him for making this his cause. He has raised tens of thousands of dollars for the Foundation to help fund the TumorTracker project, which is part of the online JTHF Pediatric Brain Tumor Resource Center. He has set some lofty goals for his fundraising and he has solicited the help of some big time people. You will be hearing more about this over the upcoming months.

We love to hear from our friends and family, so don’t be bashful to email or call us. Also, don’t be afraid to let us know what’s happening in your life and don’t be afraid to mention Jeff’s name or talk about him. He is a part of us that will always be there and we have no intention of ever putting his memory aside.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


3/7/2005
This is an especially hard update to write because it marks the six month anniversary of Jeff’s death. Not a day goes by that we don’t think about him or shed a tear for him. Time is frozen for us. We dream of a life we cannot have, we hope for a time that is in the past, and we long for the day that our family will be complete once again.

Idle time is the hardest because the mind wonders about things that will never be. The first kiss, the first driving lesson, the first day of high school, his college graduation party, and we wonder what type of person he would have become. We have tons of unanswered questions. What would he have studied in school? What kind of career choice would he make? Would he take advantage of his talents and skills and put them to good use. What would this world be like with Jeff in it?

I miss everything about having him here with us. I miss playing toss and I miss that kid throwing a baseball so hard it hurt to catch it. I miss yelling out the door for him and Joe to come in and eat. I miss yelling at him to turn the radio down, I miss arguing about the proper way to wear a baseball hat, and I miss him slamming doors. I miss having him and Joe run down the hall and jump in our bed in the morning, which always led to a wrestling match with Jeff and Joe teaming up to pin me. I miss watching him do his homework and rolling his eyes when we told him to do something. I miss watching him sorting his baseball cards and downloading songs from the computer. I miss arguing about his choice of clothes on a cold day and the amount of gel he put in his hair to get just the right look.

I stay up nights reliving the past year and wondering if we did everything we could. I wonder if he was scared, if he was in pain, and if he wanted to tell us anything before he passed away. I question if we prepared him for his journey and if I am missing any signs that he is trying to send to let us know he is alright? Why did this happen? Why…

The reality of the loss hits home at the strangest times. Driving home, watching TV, laying in bed, sitting in a meeting, hearing a song on the radio, watching a sporting event, seeing someone that reminds me of Jeff and so on. Sometimes the memory makes you smile, sometimes it makes you cry. One of my biggest fears is that those memories will fade and I will struggle to remember his voice and picture his face.

I worry about Joe and how his life is forever changed. I am so proud of him and how he is dealing with this personal tragedy. He is keeping so much inside that it hurts just thinking about it. We are attending various support groups to help us deal, but I will admit the thing that helps me the most is writing down my thoughts in these updates.

On a positive note, there is good coming from all this pain. Jeff left us a gift that helped us change the way we look at things. He showed courage in the face of death and he set the example to live life to the fullest. You only get one shot, so do it right. He changed the way a parent looks at their child. He changed the way people treat each other and his Foundation is really taking off. More on that later, but I know you will be impressed with our plans to help in the fight against pediatric brain tumors.

We have been struggling with things lately, such as the design and wording for Jeff’s headstone. It’s so hard to even talk about it, but we are getting close. How much is too much and what are the best words to put on a stone to summarize this young mans life and struggle. Just thinking about it is depressing. Then I got an email from a friend that attended the hockey game on Saturday. After the game his son had the opportunity to go into the locker room and meet the players. You forget what a big deal this is for a kid after you have been around these things for awhile, but reading the email brought a smile to my face. He said…"Dad, isn't it amazing how one little moment in your life can take your breath away. Wow, I got to go in the locker room!" Wow is right and it was the perfect medicine for me. Thanks to everyone that made JTHF Night Out with The Mighty Ducks a huge success. Not only did we raise nearly $3000, but we made a difference in at least one child’s life. Thanks Robbie!

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


2/24/2005
In memory of a close friend…

The death of a close friend or family member touches each of us in a different way. This week the Jeffrey Thomas Hayden Foundation received a special gift from one of Jeff’s friends and classmates. His name is Joseph Honkomp and he decided to honor his friend during his recent Bar-Mitzvah. This ceremony is the traditional Jewish celebration of marking the transition of becoming a young adult from a child. Becoming a Bar-Mitzvah means a lot more than just doing more Jewish things and traditions, but also helping out the community.

Joseph decided that he wanted to help raise money for the Foundation by selling yellow cancer awareness bracelets. In Judaism, remembering people is very important. Joseph set an ambitious goal of raising $1000, which illustrates how much this project meant to him. Joseph wanted to express his thanks for all the donations that he collected and to everyone that helped him become a Bar-Mitzvah including his mother Jennifer and his father Craig. I am pleased to announce that Joseph’s efforts resulted in a donation being made in Jeff’s honor of $1000 and we have been told that more is on the way. Thanks Joseph!

This week we received a very special poem from Julie McDowell, who is a teacher at Ridge Jr. I’m amazed at how many people Jeff has touched. Thanks for the poem, it meant a lot to us.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


2/15/2005
We continue to deal with the loss of our son. You have no idea how many times a day we think about Jeff and wonder why this happened. We also think about Joe and how his life has been forever changed. Some days it just rips you up inside. Our support group is helping us work through some of the issues and Joe seems to enjoy the time he spends with other kids that have also lost a brother or sister.

I found this posted on Emily’s website last week and I wanted to share it with you. For parents that have lost a child, we would give anything to have one more embrace, one more laugh, one more smile and one more moment with our precious loved one. For parents that have not lost a child, maybe this will help put things in the proper perspective. I don’t know the author, but it pretty well sums up how we feel.

Just For This…

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles……
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won’t worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won’t stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald’s and buy us both a Happy Meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
Just for this evening when I run my fingers through you hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children’s graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can’t handle anymore.
And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day………

Thanks to everyone that supported the Foundation’s proceed day at Max & Erma’s last week. Tickets are now on sale for the Night Out with the Cincinnati Mighty Ducks. Updates on the event can be found at www.jthf.org

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


2/7/2005
I would like to keep the updates on this website more personal for family and friends and keep the Foundation updates on the other website. However, since some people have not yet checked out our other website, I have been asked to post some news and information about some upcoming JTHF fundraiser events and to remind people to check out the Foundations website at www.jthf.org for more details.

First… This Wednesday, February 9th, we will be having a JTHF fundraiser at the Max & Erma’s restaurant in West Chester located at the Union Centre exit off I-75. We encourage you to bring your family and friends for lunch and/or dinner because they will donate 20% of all proceeds collected that day to our Foundation. If you are in a hurry then place a carry out order. Just remember that you must present a specially prepared coupon, a copy of which can be found on the Foundations website. Just click on the Max & Erma’s link on the Upcoming Events section and print out the coupon. You will receive a $5 off coupon from Max & Erma’s for your next visit as a gift for participating in this fundraising event.

Second… On Saturday, March 5th, we will be having a Night Out with the Cincinnati Mighty Ducks at the Cincinnati Gardens. The Ducks will donate $3 to our Foundation for every ticket that we sell and everyone that purchases a ticket from us will be eligible for special prizes. We will be raffling off some special items during the game. More details can be found on www.jthf.org under the “Upcoming Events” section.

In the future I want to report the fundraising activities and foundation news on the www.jthf.org website and reserve this website for family and friends. So please check out both websites on a regular basis and I promise to keep them current and fresh.

Some sad news… Last week little Emily lost her battle with the beast. She was five years old and her passing brought back a flood of emotions for us. Please pray for her parents Jay and Julie as they experience the first painful days without their beautiful daughter and pray for her brothers and sisters as they grieve the lost of their wonderful sister. Emily and Jeff battled the same rare tumor and were patients at Children’s Hospital. Ironically they were treated at the same place, by the same team of doctors, with the same chemo drugs, during the same time period, but they never really met each other. Jeff and Emily are now free from the beast that took them from us, free from the debilitating effects of that horrible disease, free from the constraints of their earthly bodies, but the pain of not having them with us is unrelenting.

Some good news… Last Friday, Cindy and I had the opportunity to visit the campus of The Ohio State University. As some of you may know, we made a commitment to Jeff to establish a scholarship in his name at OSU and this trip was another step in getting that done. We had a great time and were introduced to some wonderful people. We spent the morning touring the James Cancer Hospital and the School of Medicine. Then we had lunch with Dr. Chiocca and were given a tour of his research lab. He is an expert on brain tumors and was brought to OSU to start up their Brain Tumor Research Center to help find a cure and rid this world of this killer. We talked about Jeff and his struggle and we were grateful for the time Dr. Chiocca spent with us.

Then we got a tour of the athletic facilities and it may sound strange, but I felt that Jeff was with us as we walked the halls. It was more than a little bit emotional, but it took this visit to understand why Jeff was such a big fan. This was Jeff’s place and his presence was all around us.

Then we got a surprise… Coach Jim Tressel invited us into his office and we spent some quality time with a quality man. He wanted to know more about Jeff and wanted to find out what the Foundation was all about. He told us how cancer has touched his family and he committed his support to help our foundation fight this horrible disease.

I could go on and on but it’s getting late, so I’ll wrap it up with this last thought. I am amazed at the generosity of people and I am convinced that something good will come from this pain. Next week I head to California to meet with some special people that want to help Jeff’s Foundation become the leading source of factual information about Pediatric Brain Tumors in North America. More on that later…

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


1/14/2005
Sad Reminder… One year ago Jeff was diagnosed with a diffuse intrinsic pontine glioma and was given less than a year to live. I joke around that I never can remember anything, but I remember everything that happen on January 14th and 15th, 2004.

Jeff had an appointment on the morning of the 14th to get a checkup from his pediatrician. Cindy took him and then met me for lunch at Frisch’s. The doctor ordered an MRI, so Cindy took Jeff that afternoon and I went back to work. I didn’t meet up with them again until 10:00PM later that night at Children’s. What happened in between lunch on the 14th and the next afternoon is private, maybe someday I will talk about it, but not today…

I will tell you this… Cindy was with Jeff every minute of that day, from the visit to the doctor’s office in the morning to the drive home from the hospital late that night. And she rarely left his side for the next 8 months. Some days were good, some days were bad, but each day was precious. That kid was lucky to have her as his mother…

This past year has been an agonizing journey. Our faith has been tested and our will power has been pushed to the limit. How much more? I don’t know the answer to that but I can tell you this… I have never been so proud of anyone than I was of Jeff. How he dealt with adversity and how he maintained a positive attitude is amazing. Can you imagine what a 12 year old is thinking when he is told he has a brain tumor? I can’t.

And what about his brother Joe? His actions, attitude and support throughout this ordeal made me so proud of him. It hurts to know his life has been forever altered by this horrible disease.

So today, we mourn the loss of our wonderful young man, while at the same time we celebrate and honor his life through our everyday actions. He touched more people than I can imagine and my hope is that through his Foundation he can continue to touch and influence people in a positive way. The Foundation is really starting to pick up momentum. Coach Babcock is spending much of his free time promoting cancer awareness and JTHF. Please check out the updates on the Foundations website, (www.jthf.org) we made the national news with our latest story. We have some fun things coming up, so check out the events section for more details.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially a wonderful little girl named Emily and her family. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


1/5/2005
This Saturday, January 8th, will be 4 months since we lost Jeff. I mentioned in an earlier update that we are caught in a time warp and time stands still for us… It seems like only yesterday and it seems like forever, all at the same time. Picturing him in the yard playing with his brother, remembering a special moment, and then struggling to make sense of it all. Jeff is never far from our thoughts and we see him, and think about him, in everything we do.

The holidays were a blur, filled with mixed emotions, and we are glad they are behind us. What hurts the most is the thought of our future without Jeff in it. I get angry at this disease because of what it has robbed from our family and it makes me more determined to defeat it. Our son was a brave warrior who fought a tough and tenacious battle, now it is up to us to carry on his fight.

And what a fight it is… Our Goal is to eliminate brain tumors as one of the leading causes of pediatric cancer deaths, and we want this to happen in our lifetime. We will do this by creating awareness, funding research, assisting support organizations and offering academic scholarships to deserving young adults.

Jeff set some lofty goals in his short lifetime and we do not want to see his efforts wasted. His Foundation has focus and direction. Our friends have provided the funding to get the ball rolling and now it is up to us to take the next step. Please visit the newly revamped site at www.jthf.org and see what we are doing and think about volunteering to help out on one of the committees.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially Emily and her family. May God be with them on this agonizing journey.

Also, say a prayer and open your wallets for all the people affected by the recent Tsunami tragedy in Asia. Never underestimate the power of Mother Nature and never underestimate the will of the human spirit to survive.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :0)


12/29/2004
Happy New Year!

We are well into the Holiday Season and our hearts ache at not having Jeff with us. We missed having the boys jump on our bed and wake us up on Christmas morning. We missed the mad rush downstairs to watch them shred the wrapping paper off their presents. We missed the mountain of paper and boxes left behind in their wake. We missed having two of everything. We missed seeing how they divided up the stuff, and we missed seeing the smiles and hearing the laughter that goes along with Christmas morning.

This year was a little more somber as we watched Joe open his presents alone. It hits you like a ton of bricks knowing this will be the first of many holidays spent without our brave warrior. We try our best to be happy and overcome the sadness, but it’s difficult.

We did smile when it started snowing. Jeff and Joe always like having a white Christmas and I have a feeling that Jeff had something to do with the recent storm that dumped more than a foot of snow on us! We did smile when we watched Joe open his presents and we did smile as we watched Maggie try to chew up a bone that was the size of a small farm animal!

On a lighter note… we are making progress with the Foundation. Thanks to our many friends and family we have raised over $35,000 and we are well on our way to getting things organized for the upcoming year. We hope to have all the Contribution Acknowledgements and Thank You’s mailed out by the end of this week. If you made a contribution to the Foundation, either through Fifth Third Bank or directly to us, and you have not yet received a formal acknowledgement letter from us, please contact me so we can take care of that. Jeff’s Foundation is a registered 501(3)c organization and your contributions are tax deductible.

Also, we have received a new shipment of yellow wristbands from the Lance Armstrong Foundation. We have hundreds of both adult and youth sizes available. Wristbands can be obtained by making a tax deductible contribution to the Jeffrey Thomas Hayden Foundation. Contact me for more details.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. This time of year is especially hard for some people so I would ask that you say a special prayer for all the families that are experiencing the holidays without their loved ones. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :o)


12/23/2004
Merry Christmas!

I want to share with you a poem we received. It's called...

My First Christmas in Heaven

I see the countless Christmas tress around the world below,
with tiny lights, like heaven’s stars, reflecting on the snow.
The sight is so spectacular, so wipe away that tear,
for I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs people hold so dear,
these sounds of music can’t compare with the Christmas choir up here.
I have no words to tell you the joy their voices bring,
for it is beyond description to hear the angels sing.

I know how much you miss me; I see the pain inside your heart,
but I am not far away, we really aren’t apart.
So be happy for me dear ones, you know I hold you dear,
and be glad I am spending Christmas with Jesus Christ this year.

I send you each a special gift from my heavenly home above.
I send you each a memory of my undying love.
After all “love” is the gift more precious than gold.
It was always most important in the stories Jesus told.

Please love and keep each other as my Father said to do,
For I can’t count the blessings or love he has for you.
So have a Merry Christmas and wipe away that tear,
Remember, I’m spending Christmas with Jesus Christ this year.

Thanks for the poem!

I would like to say everything is fine, but it’s not. Christmas will never be the same without Jeff and we miss him more each day. We plan on doing the things we always do; such as going to church, visiting with family and friends, and opening presents on Christmas eve, but the void of not having him here can never be replaced.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. This time of year is especially hard for some people so I would ask that you say a special prayer for all the families that are experiencing the holidays without their loved ones. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :o)


12/8/2004
Three months have gone by since Jeff passed away. Wow, it’s still so hard to believe…

Whether it’s been three months, or three years, or three days, or three minutes… it doesn’t matter because time seems frozen for us. He is in our thoughts constantly, but reality hits home while visiting the cemetery. It’s hard to sleep at night because it’s in those quite times, when our mind starts to wonder, that we get sad and miss our boy the most. We smile when a memory pops into our minds about something funny that happened or we stumble across a situation that reminds us of Jeff. This happens hundreds of times each and every day and part of us hopes that it will never go away for fear that we will forget something.

Message to friends and family… it’s ok to mention Jeff’s name to us. Please do not avoid talking about him, because that makes things worse. He touched so many people and it’s ok to talk about something he did or share a favorite memory with us. The thing that hurts the most, and the thing that is tough to talk about, is something that Jeff will not get to experience, such as; opening Christmas presents this year, or graduating form Jr. High, or going to High School, going on his first date,… you get the picture… so please understand that those things are really hard to deal with right now.

It’s been tough but we do our best to get up each day and try to move on, but some days are worse than others. I feel bad that Joe’s childhood has been forever altered by this disease. It’s bad enough to deal with this as parents, but I can only imagine what he is going through. To help us deal with the overwhelming grief, we attend a support group as a family several times a month and we are learning to redefine what normal is and we are learning to redefine what happiness is. Our lives are like a clay flower pot that has been broken into hundreds of pieces. Over time the pot can be pieced back together, but it will never be the same. Our friends and family become the glue we need to repair the pot and we take it one day at a time.

I have an update on the Foundation… The final tally was counted from the Freedom Elementary Polar Express movie fundraiser. A check for $1802.50 was handed over this week and we are deeply grateful for all those that participated. This pushes the total amount collected to over $33,000. I will begin to post more news on that website in the upcoming weeks as we plan our 2005 fundraising and events schedule. We have begun work on a project that will hopefully provide information on treatment options to other parents that must make these life altering decisions. This is going to be big, but more importantly, it’s going make a difference and change the way people confront and deal with this disease. Please check out the foundation website www.jthf.org from time to time to see all the wonderful things people are doing to honor Jeff’s memory.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially two wonderful kids named Sam and Emily. Also pray for my friend Leader and his family as he does battle with the beast. May God be with them on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


11/25/2004
Happy Thanksgiving…

These two simple words have taken on a new and deeper meaning. The thought of entering into the holiday season without Jeff is completely unbearable and fills our hearts with sadness. But in spite of all that has happened, we have much to be thankful for. We are thankful for the twelve years, 10 months, and 22 wonderful days that we had with our son. He truly was a gift from God and we miss him dearly.

We are thankful for the treasured memories of our brave warrior that we will carry with us for the rest of lives. We are thankful that Jeff made the most of his short time here on earth and was able to touch so many lives. We are thankful for our amazing, supportive, caring and wonderful friends and family. We are thankful for the kind words, the contributions to the foundation, the wonderful meals, and the countless prayers said for us. We are thankful for our outstanding, understanding, caring and extremely supportive family. But most of all, we are thankful for every day, every hour, every minute and every second that we spend with our son Joe.

We are thankful to live in a land that values freedom, a land that provides endless opportunities to its people, a land that allows for religious expression and a land that gives equal rights to all. We are thankful to all the men and women that put their life on the line to serve and protect that which we hold dear.

And since I’m on the subject of giving thanks I have another story to share with you…

This one is about a wonderful little eight year old girl named Kennedy whose smile can melt butter and whose heart is made of gold. She didn’t really know Jeff that well but she was touched by his story and wanted to do something to help. Her parents planned to celebrate her 8th birthday on November 14th by having a party with her friends. But Kennedy added a little twist to the story by requesting that her friends make a donation to Jeff’s Foundation instead of bringing a present. You have no idea what that meant to us. Thank you Kennedy.

Recently, I had the pleasure of meeting Kennedy’s mother, grandmother, and great grandmother. It is obvious that Kennedy comes from a long line of caring and generous people that value family, friendship and freedom. Thanks Nanny for sharing your stories with us, I wish there were more people like you!

Jeff continues to touch people coast to coast, up north and overseas. Contributions to the Foundation keep coming in from around the world and it helps us to know that donations are being made in Jeff’s name to other worthy organizations and charitable work is being done to honor his memory. A few of these stories are being posted on the Foundation’s web site and they keep coming in, but they will need to wait until next time because I’m getting hungry.

As always… I’m constantly reminded that Jeff was not alone in his battle. A visit to Children’s Hospital this week was a stark reality that there is much more work that needs to be done to rid this world of this horrible disease. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially a brave little local girl named Emily. May God be with her and her parents on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


11/17/2004
Here’s another great story that I want to share with you.

Dr. Kline, the principal at Freedom Elementary, had an idea to combine a fun activity with a fund raiser. The Polar Express movie opened at the Rave Theater last week. Dr. Kline made a call to the theater and reserved two showings for the families of Freedom Elementary students. The Rave waived some of their fees and $1 per ticket was donated to Jeff’s Foundation.

It gets better… Upon hearing about the Polar Express showing for Freedom, our friend Tim Goeglein, sent a letter to one of his coworkers at Kraft, who then passed this to someone at Warner Brothers. Within days of this request, Warner Brothers was assembling a package of goodies that were sent to Dr. Kline. These items were then put on display at the Rave and chances were sold to raffle them off, with all the money going to the Foundation.

At the conclusion of the movie, Dr. Kline presented the Foundation a check for $1,450 with the promise of more money coming once all the raffle tickets were collected and additional donations counted. The final amount will exceed $1,600!!! And it all started with an idea to combine fun with a fund raiser. The check is currently on display at Freedom.

This article was posted on the Freedom Elementary web site. (www.lakotaonline.com/freedom/fewelcome.html) …

Freedom Night at the RAVE was a huge success. Over 550 students and their families attended a private showing of the holiday hit The Polar Express. As a result, Freedom's Family raised approximately $1,600 for the Jeffrey Thomas Hayden Foundation.
Special thanks to the RAVE Theater, Freedom's Parent Council, Warner Brothers and Kraft Corporation (donated Polar Express items for the raffle), and all our parents and community members for giving so generously to the Foundation.

As a special touch, Mrs. Burns (3rd grade teacher) gave each child a bell to take home as a momento…

The stories keep coming in and I will share them in the upcoming weeks.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially a brave little local girl named Emily. May God be with her and her parents on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


11/10/2004
I want to tell you a little story about how an idea turns into reality. Chelsea Pitonyak and Chelsea Andrews are 7th graders at Ridge Jr. High and were classmates of Jeff. They wanted to do something to honor and remember their fallen friend. After some thought, they came up with the idea of a “Book Drive”.

They talked to some of the teachers and administrators at several of the area schools about their idea and got the OK to move forward. Then with the help of their parents and some good friends they designed some flyers, made up collection boxes and started to spread the word.

Well guess what… Their idea turned into reality and October became Jeff’s Book Drive month and the collection boxes started to fill up. And, as the story goes, the rest is history. The book drive was a huge success, with 184 books donated in total. The girls then sorted the books by age group and a sticker bearing Jeff’s picture along with the name of the individual or family that donated the book was placed inside as a permanent reminder of our brave warrior.

The girls will be presenting the books to the selected schools and to Children’s Hospital in the very near future.

The breakdown was:
36 books to Ridge Jr. High
73 books to Freedom Elementary
75 books to Children’s Hospital Oncology Unit

Thanks girls! Your idea turned into reality and over $1,300 worth of new books were collected and donated in Jeff’s memory. Thanks for getting involved and doing something nice for the schools and for all the kids and parents that will read these books at Children’s Hospital.

Next week I will update you on how another idea turned into reality and raised some serious money for the Foundation.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially a brave little local girl named Emily. May God be with her and her parents on this agonizing journey.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


11/3/2004
This article appeared in the Orange County Register on Tuesday and is being reprinted here with permission.

By JEFF MILLER
The Orange County Register

ANAHEIM – Mike Babcock is sitting in his quiet office, next to a vacant locker room, inside a building dark and empty.

"What did I say?" he asks, repeating the question. Now Babcock is reading his own words aloud, pausing midsentence, forcing himself to swallow and saying "whew" between sighs, the hard and tough pro hockey coach trying his best not to cry.

You think the NHL is worthless these days, think everyone is just sitting around with their skates propped up and wasting time? You have no idea.

But before we can continue this story, we have to make a slight turn here, because this isn't really about Babcock. He wouldn't have cooperated otherwise. "I'm not important," the Mighty Ducks coach says.

This is about his cause, a cause inspired by frustration, death and the shattered hearts of defeated parents.

So let's go to Ohio, suburban Cincinnati, to the final resting place of Jeffrey Thomas Hayden. It was here, a few weeks ago, that Babcock delivered a eulogy for the 12-year-old victim of brain cancer, the eulogy that now is choking his words.

The families have been friends since 2000, when Babcock coached the Mighty Ducks' top minor-league affiliate. They were neighbors, their kids sharing every bat, ball and cold symptom. During his quietest moments, Babcock can still hear Jeffrey's mom calling for her son to come home.

Jeffrey was diagnosed in January, and for the next nine months his parents, Cindy and Tim, suffered along with him. Mom and Dad still are suffering today, still angry and confused about how and why they simply ran out of time.
Despite all that's known about cancer, all the research and case studies and clinical tests, despite the seemingly limitless information monster called the Internet, the Haydens discovered there is no central database parents can use for cross-referencing when decisions must be made.

"There's no clearinghouse, no road maps to go by," Tim says. "The doctors tell you your options, then ask what you want to do. As a parent, I couldn't go to one place to check out what other parents had experienced. Trying to find out anything just takes too much time. And we didn't have much time."

Says Babcock: "I don't know the answer, but maybe somebody with a brain will read this and come up with something. It has to be someone smarter than me. All I know is, there has to be a way to make this happen."

Babcock's hands are waving now. He's making fists and pointing. His passion is as obvious as the bright yellow Livestrong bracelet on his right wrist. Hockey is in this man's blood, but he is just as intense, just as fiery when the subject is cancer.

He was in his mid-20s, coaching and teaching at Red Deer College in Alberta, when his mother, Gail, died of ovarian cancer. There's a saying around the Babcock house today. "Just remember, Grandma's in heaven watching over you."

One of Babcock's buddies is Mark Rypien, the former NFL quarterback. Rypien lost his 3-year-old son, Andrew, to cancer. On a plane just a few days ago, Babcock sat next to a woman named Stephanie. She's a cancer patient who told Babcock, "My biggest worry is some other woman raising my two boys."

"There's a message in all that, right?" Babcock says. "Wake up and do something. It feels like a calling to me. You see these parents, and their hearts have just been torn out of their chests. How can you not want to do something?"

Last week, 20 Mighty Ducks employees visited the Children's Hospital of Orange County, painting pumpkins with kids and handing out Wild Wing dolls. Before leaving, Babcock made a point to stop on his own in the cancer wing.
When he explains his motivation, he doesn't offer the typical blah-blah about keeping things in perspective, doesn't roll out the clichés about giving back to the community. This is deeper than that.

"It's a chance to have an impact, not with medicine or research, but an impact with joy and interaction," Babcock says. "I'm not going to help them live one more second, but maybe I can give them one more minute of joy. I don't know medicine, but I do know people, and I know sometimes they just need to talk."

And sometimes they just need to listen. Babcock practiced Jeffrey's eulogy maybe a dozen times in front of his assistant coaches and presented it without flaw at the funeral. He is paid to speak in public, companies regularly flying him in to talk to groups about things like leadership and teamwork.

But here he is, in front of an audience of one, struggling to make it through the eulogy again. Not surprising, actually. This can happen when you open your mouth and your heart at the same time.

"The picture I have in my mind of Jeff ... that I will take with me ... is him in his Ohio State football jersey ... flashy new runners ... a dab of mousse in his hair ... and a twinkle of mischief in his eye."

He delivered the final words on a young man's life, but Mike Babcock isn't done talking about this subject. His hope today is that the right someone, someone who can help parents like the Haydens in the future, indeed, is listening.


As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast, especially a brave little girl named Emily. May God be with her and her parents on this agonizing journey. Also, keep Peter and Cathy Herr in your prayers as they mourn the loss of their infant daughter Ashley Rose.

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/27/2004
Cindy, Joe and I want to thank everyone for their continued support as we deal with the enormous loss of our brave young man. This week I have three very positive things to share with you…

First… I want to thank Mr. Ed Rudder, principal of Ridge Jr. High and his staff for establishing an award in Jeff’s name. It’s called the Jeffrey T. Hayden Memorial Award and will be presented annually at the Ridge Jr. High Fall Sports Banquet. The award is open to 7th grade student athletes who have been nominated by their coaches and a final decision is made by a selection committee. Recipients of this award will be someone who exemplifies the special characteristics of Jeff, who is a good friend to others, who works hard in practice and on game day, and most of all, excels in the classroom. Also, the recipient of this award will be someone who is a positive influence and who displays courage in the face of adversity. The recipient will receive an individual plaque and their name will be engraved on a permanent plaque that will hang in the school. The inscription on the award was actually written by Jeff and it says… “Never Give Up. Set goals that seem impossible, with perseverance you can see how easy they are to achieve.”

This year the award went to a very special young person who exemplifies all of the characteristics mentioned above on a daily basis. This athlete is talented on the court and in the classroom. She is a hard worker who has persevered in difficult times. She displays a maturity, respectful attitude, and thoughtfulness that is beyond what is expected of a 7th grader. Her positive spirit is genuine and contagious. We are honored that the first Jeffrey T. Hayden Memorial Award was presented to Paige Foster.

Second… Brain Tumor Cancer awareness is an important cause and people that knew Jeff understood how much he loved his baseball hats. We are pleased to announce that The Jeffrey Thomas Hayden Foundation has donated Jeff’s “Tomahawk Football hat” to the Brain Tumor Action Network (BTAN) and will be included as a permanent item in the “Hidden Under Our Hats” display, which will be visiting the Cleveland Clinic November 17th – 24th on the west-end of the skyway (near the InterContinental Hotel entrance). Hidden Under Our Hats is a national brain tumor awareness project presented by BTAN and we are honored to participate in this very powerful display. Over 1,000 hats celebrate the lives of children and adults who have been touched by brain tumors. Throughout the year, the exhibit travels to various cancer centers, conferences and fund-raisers around the country. During Brain Tumor Action Week in May, the exhibit is displayed in Washington, D.C. For more information on the Cleveland Clinic Brain Tumor Institute, please visit www.clevelandclinic.org/braintumor. For more information on the Brain Tumor Action Network, visit www.btan.org.

Third… Your contributions to The Jeffrey Thomas Hayden Foundation have surpassed $27,000 and it’s growing every week. The money collected will be used to create the Jeffrey T. Hayden Scholarship Fund, and award grants to targeted brain tumor research programs, and assist other non profit organizations and worthy causes. The yellow Lance Armstrong wristbands for cancer awareness are still available by making a small contribution to the Foundation. Email me for more details. And finally, the Foundations web site (www.jthf.org) is nearly complete and we look forward to sharing much more information on the projects and organizations we support.

As always… I’m constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave young warriors and their families as they wage war with the beast. May God be with them on their journey.


Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/20/2004
The Tree Dedication Ceremony and Balloon Launch last Sunday went extremely well. The weather cooperated, which in itself was a small miracle, given the conditions the day before and the day after. It was good to see so many friends and family join us for this celebration on this beautiful day. I really thought that I would be able to make it through the event and properly thank everyone without choking up, but it was not to be. So I want to take this opportunity to thank everyone that made the day special. The Freedom Elementary administrators; Dr. Kline, Principal; Sabrina Hubert, Assistant Principal; Kathy Baxter, Counselor; Jeff’s teachers, especially Mrs. Ebbing, 6th grade; Ms. Hoop, 5th grade; Mrs. Keefer, 3rd and 4th grade, and Mrs. Floyd, 1st grade. Thanks to all the other teachers and staff involved in the planning, including Mrs. Scarbrough, Mrs. Baliff, Mrs. Gausmann and thanks to Natorps for donating the tree, Mark Davis and the Brinkman Group for the landscaping, Jeff’s friends that read poems or helped plant the tree, and finally Children’s Hospital Starshine group for providing the balloons. I say…Thanks for sharing the moment and thanks for helping keep his memory alive…

I posted some pictures from the event on the photos page… thanks Beth for the great pictures.

I have finally received my shipment of yellow LIVESTRONG wrist bands from the Lance Armstrong Foundation. Let me know if you need any, I have both adult and youth sizes. All money collected from the wrist bands will donated to the Jeffrey Thomas Hayden Foundation, which to date has raised over $25,000. www.jthf.org

On a personal note, our family has begun the healing process. This will take time. How do you fill the void left by such a loss? Not a single week, a day, an hour, a minute rarely go by without thinking about him. Anger, frustration, helplessness and sadness dominate our emotions. We know that our lives are forever changed and we must carry on yet we live knowing so many other kids and parents are in similar situations. I am constantly reminded that Jeff was not alone in his battle. Please pray for all the other brave little warriors and their families as they wage war with the beast. May God be with them on their journey.

I promised several weeks ago to publish the eulogies that were given in Jeff’s honor. This eulogy is the third of three and was written by his brother Joe.

It is titled… My Hero

Jeff was a great kid, and to you all, you know him as my twin brother, but to me Jeff is more than that, he was my best friend. Jeff loved sports and liked hanging with friends, most of all he loved life. He enjoyed everything about it and had never wasted a moment of it. From the day he was diagnosed, to the day he went to rest, were probably the most depressing months of our lives. Through all this time Jeff was a brave fighter and never shed a tear. All through the depressing time Jeff was still teaching us all and made us stronger. The one thing Jeff taught me was the value of life. He taught us to work hard and don’t waste your life because it itself is a miracle. Cherish it and represent yourself well, because you only get one shot. In 12 years Jeff accomplished a lot, made us proud, and in my heart he is one huge word that means a lot to me… HERO

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/12/2004
The Tree Dedication Ceremony and Balloon Launch are scheduled for this Sunday, October 17th at Freedom Elementary School in West Chester. The actual ceremony to dedicate a tree in Jeff’s honor will begin at 5:00PM followed by the Balloon Launch at 5:20PM. If you have not already sent us your message, we urge those of you that are coming to the ceremony to arrive 15-20 minutes early to give you plenty of time to tie your messages onto the balloons. If for some reason the weather does not cooperate, then the ceremony will take place inside the school and the balloons will be released at a later date by the school children.

I promised several weeks ago to publish the eulogies that were given in Jeff’s honor. This eulogy is the second of three and was written and presented by family friend, Mike Babcock.

It is titled… Celebrate Jeff

We are gathered here today in faith to celebrate Jeff’s life and his new life with Christ. We have no answer to the question why. As a parent we are always comforted to know where our children are. Tim and Cindy can take comfort today in knowing that Jeff is with Christ till the end of time.

I came to know the Hayden’s in the summer of 2000 when we moved to the cul-de-sac here in Cincy. Jeff and Joe were 8 and I can’t even talk about Jeff without Joe, they were inseparable. Driving here this morning, my wife Rene and I saw two deer, a sign, like Jeff and Joe together.

Jeff was about jamming as much into a day as possible. He’d knock on the door and ask “Can Mikey play?” And then it was on. Baseball game, fight, cool-off period. Football game, fight, cool-off period. Basketball game, fight, cool-off period. Road hockey, fight, cool-off period. And as it got dark it was Capture the Flag until the mom’s yelled to come inside. It was about how much Jeff could get into one day.

There were meals in the cool off periods. Jeff loved to eat and Tim would always say “Don’t interrupt the kid when he is eating.” He loved to sneak his candy and chocolate at any opportunity.

Jeff loved sport. He loved the guys, the fellowship, but he lived for the competition. He loved to compete and he loved to win. During the last Winter Olympics, it was Canada versus USA in the hockey final. Jeff switched nations to get the win in the cul-de-sac game.

Things came easy to Jeff. He was a gifted, gifted student and he was smart, very smart. It was hard to slide anything by him and boy was he quick. He had a great sense of humor and he loved to laugh and joke. He had that twinkle in his eye that he might be up to no good.

Jeff loved kids. Teaching little Blake to hit the ball or letting my little Taylor be involved. She called them the “Big Boys” and she worshiped them. They included her because Jeff ruled the cul-de-sac and he allowed the little ones to be important too.

Jeff had great friends like Kyle, Ryan, Rocco, Dylan, Abi, Mikey, Brian, Tyler, Taylor, Eric, Zach, Parker, David, Johnny, Brady and on and on, but there was only one Joe. They were as thick as thieves. Jeff could abuse Joe, and he often did, but you better not cross Joe or Jeff would be there.

Jeff and his Mom… The most important member of the family is the mom. Cindy never missed anything. She knew where her boys were at very minute, whether it was at their sporting events or activities involving in their religious education. She nursed Jeff through his battle, never leaving his side, protecting his dignity at all cost. What love. I can still hear her voice ringing through the neighborhood… ”Jeff…JEFF…JEFFREY GET IN HERE” and he was gone.

Cindy dressed the boys in the newest flashy shoes, the latest in sports jerseys and hats, trendy to say the least. It cost me some serious money just trying to keep up.

Jeff had a kinship with his dad, a mind like his dad, beyond smart, beyond perceptive. A love of sport like his dad and a passion to be the best like his dad. Heck, Jeff had a passion for his dad.

The picture I have in my mind of Jeff that I will take with me is him in his Ohio State football jersey, flashy new runners, a dab of moose in his hair and a twinkle of mischief in his eye.

Tim sent me a note on Thursday. His final line was…”He was a fighter, he was independent, he was my buddy and he tried like hell to beat this thing. I am going to miss him more than words can ever describe.”… “He was a fighter, he was independent, he was my buddy.”…

In my family, since my mom passed prior to my kids being born, we have a saying. “Remember Gram is watching over you.” Cindy, Tim, Joe and everyone in the congregation remember Jeff is watching over you. We’ll be fine.

Thank You Jeff

Rest in Peace Jeffrey. We love you and we miss you, but we will never forget you. :)


10/6/2004
Its’ been said that time will help to heal the pain. We can tell you that if this statement is true, then there better be a lot of time, because the loss we feel is enormous.

We are doing better, but we still have our good days and bad days. One thing that brings a smile to our faces is the generosity that our friends, family and complete strangers have shown through their contributions to the Jeffrey Thomas Hayden Foundation. The figure has topped $20,000 and continues to grow each and every day. Thank You! I hope to have more information on the Foundation in the next couple of weeks. Please be patient with us as we try to respond to everyone that has sent us a card, letter, email, gift, contribution, etc.

October 17th is Jeff and Joe’s 13th birthday. To mark the occasion, a memorial tree is going to be planted at Freedom Elementary in Jeff’s honor. Jeff loved that school and having them create a permanent memorial is a huge honor that would bring a smile to his face. A short ceremony is planned for 5:00PM on Sunday, October 17th at the school that will include a Balloon Launch. Everyone is welcome to attend and participate. Directions to the school can be found on www.lakotaonline.com.

We encourage our friends and family from around the world that cannot make it to the ceremony, to release a balloon at 5PM EST on the 17th. Children’s Hospital will provide the balloons for this event at the school. The students at Freedom and Ridge will be given the opportunity to write a private message that will be tied to a balloon. If you want to write a private message to Jeff, then send us an email via the “Contact Us” page of this web site by October 15th. We will attach your message to a balloon or you can bring your message to the ceremony. We recommend the email version because that gives us an idea of how many balloons to prepare, but we will make arrangements for those of you that want to attach your message to a balloon and launch it yourself. I will pass on more details as they become available.

Last weekend we moved into our new house with mixed emotions. We cherish the memories of our old neighborhood, but at the same time, we look forward to what the future will bring. Remember this… It’s not a house that makes a home; it’s the people that live in it. It’s the love inside; it’s the neighbors and the kids and everything around it. I wish I could describe to you what a special place the cul-de-sac was to raise our kids. The memories are priceless and the friendships created will last a lifetime. Even though we no longer occupy the old house, we will always be part of it. If you want our new address then just send me an email or call me and I will give it to you. Our phone number stayed the same.

Please continue to pray for all the other kids and their families whose battle is still being fought and for the countless families that have had their lives forever changed by this dreaded disease.

God bless you Jeff. We love you, we miss you and we will never forget you. :)


9/29/2004
It's hard to believe that 3 weeks have gone by since Jeff passed away. The void he left in our lives is enormous and emptiness we have in our hearts is bottomless. We are doing ok, we have good days and bad days, that's to be expected.

Joe is back to school and Cindy and I are trying to resume our lives. We know that things will never be the same and our lives are forever changed. I want to thank our friends, family and complete strangers that have collectively donated nearly $20,000 to the Foundation. Your generousity continues to overwhem us!

I wanted to share with you one of the three eulogies that was given to honor Jeff's memory. I will share the other two over the next couple of updates.

This was written and presented at the funeral mass by John Siegel – Jeff’s uncle

For those of you that don’t know me, I am Jeffrey’s uncle by way of marriage to Tim’s sister, Denise. When Tim asked me if I would do the eulogy, I was initially hesitant because 1) I’ve never given a eulogy and 2) I wasn’t sure if I would be able to maintain my composure. After thinking about it for a short time, I realized what an honor it was to be asked to speak about what an incredible kid Jeff was and share some family stories reflecting on his life.

When I first met Tim, Cindy and the boys, it was when the boys were about two years old. They were as cute as can be, dressed in their little matching Gymberee outfits and full of energy and we had a great time horsing around. However, what struck me most was how much Joe looked like Cindy and how much Jeff looked like Tim.

As Jeff grew and I had more interaction with the Hayden clan, it became clear that he shared other similarities and interests with his dad. They shared a love for dinner rolls which they both devoured in large quantities at every Holiday meal at Tom and Jean’s house. They shared a passion for Golf. They both collected ball caps. They both had an appreciation and interest in art. They both drove their cars recklessly (Tim his car du jour and Jeff his go-cart)

Jeff shared many traits with his mom as well. Like Cindy, he always had an ambitious to do list. He was focused and dedicated to accomplishing all his goals just like his mom.

Jeff and Joe on the other hand, had very different personalities, yet it was always amazing to me how well they got along. Although Tim and Cindy may disagree, it was very rare for the family to see Jeff and Joe argue or fight. Their relationship as brothers was obviously very, very special.

As Jeff grew, he became quite the jock playing just about any sport he could find the time to play including (baseball, basketball, and football). On one occasion, Denise, Kathy, Emma, Maia and I we went to watch Jeff and Joe play football. During and after the game Emma and Maia acted as team cheerleaders yelling out Jeff and Joe’s names. I think this embarrassed the heck out of Joe but you could tell that Jeff enjoyed the attention and being in the limelight. He was quite the ham. Jeff thought he was the best at everything and his confidence was always evident.

I feel very fortunate to have shared some common interests with Jeff; one of which was fishing. This was one interest he didn’t have in common with his dad or brother. Anytime the entire family went to Lake Eerie, I knew I had a fishing buddy, which was very special to me. Although Jeff had a lot of passion for fishing, it didn’t come natural. I guess that’s one trait he didn’t inherit from Grandma Jean. However, the thing that was great about Jeff was that no matter how poorly the fishing was going or how often his line would get tangled up, he was always determined that he was going to catch the next fish and that it would be the biggest.

On many of the fishing trips, Emma and Joe would lose interest a few hours into the fishing and begin playing with the worms or minnows. Not Jeff. He just kept on fishing with determination and eventually he would catch a few. That was one of the things that made Jeff – Jeff (his determination and competitiveness). This is another trait he shared with his dad.

Another example of his determination and drive was evident in a game we all loved to play at the lake house, Scrabble. When we played the parents and grandparents would each team up w/ one of the kids. Not Jeff though, he wanted to be on his own (independent and determined). Much like the fishing trips, the other kids would lose interest about two thirds of the way into the game and go off and watch TV or do something else. Not Jeff, he was bound and determined to win and the amazing thing was that most of the time he did, without the help of an adult. I’m not sure if that speaks to how bright and good Jeff’s vocabulary was or how poor the adults were. I choose to go w/ how bright Jeff was.

Jeff was truly an amazing kid. I am very blessed to have been a part of his life and to have married into the Hayden family.

God bless you Jeff. We love you. We miss you and we will never forget you.


9/22/2004
This article appeared in Monday's edition of the Globe and Mail, which is a leading national newspaper in Canada similar to USAToday. ...

By ROY MacGREGOR
From Monday's Canadian Globe and Mail

He ran with Jeff in his pocket.

Brady Shaw is only 12 years old and on a crisp Sunday morning when even the sky seems freshly washed and drying in the wind, he looked little different from the hundreds of other youngsters running through the streets of this small community on the outskirts of Ottawa.

He looked, in fact, almost exactly like a dozen other 12-year-olds in similar dark track suits, all members of the Kanata Lightning soccer team that, only the day before, had won the championship.

Today, however, they were competing for Jeff Hayden and a prize that too often seems forever out of reach.
All the players wore red and white ribbons, the team colours Jeff liked best, but only Brady, Jeff's closest Canadian friend, carried the picture.

It showed Jeff on Parliament Hill. The youngster from Cincinnati stood with his twin brother Joey, with Brady and two Mounties, the Peace Tower behind him, more cancer treatments ahead of him.

On Sept. 8, less than two weeks earlier, Jeff Hayden died of inoperable brain cancer. Brady Shaw set loose 12 red and white balloons that day and then talked to his soccer team about running for the smiling sports nut from Cincinnati that Brady had befriended last year while Brady's father, Brad, was coaching hockey in the city.
Brady had used a school project to tell Jeff about Terry Fox, and now Terry Fox would tell all Brady's Canadian friends about Jeff. And yet not one of them was even born when Terry Fox was still alive.

It is an astonishing story. A young man from British Columbia says he is going to run a marathon every single day until he has crossed the country. Improbable for anyone; impossible, surely, for anyone with only one leg.
He begins on April 12, 1980, in St. John's and is barely noticed for the first half of his trip — yet, by the time he is forced to stop because the cancer has spread, he has covered 5,743 kilometres in 143 days and has won over a nation that too often has trouble believing in anything.
What is now equally astonishing is what has happened in the 23 years since.

Brady Shaw's school is but one of 4,500 involved in these annual runs. There are now 50 countries holding Terry Fox Runs. Nuns run in Ireland. A million run in Cuba. Some $340-million has been raised for cancer research.

The cancer that took Terry Fox's leg in 1977 left him with a one-in-five chance of survival; today those chances are four out of five.
Perhaps one day everyone will survive; perhaps one day the brain cancer that took Jeff Hayden will be operable.
This Friday in the Peel District School Board outside Toronto, another Terry Fox run will involve 343 schools and 257,000 students and staff.
They will run, will likely raise millions, and after will sit and watch a new documentary called Terry Fox: Keeping the Dream Alive. The documentary was produced for Rogers Television by Carolyn Weaver, whose highly empathetic interviews show how, 23 years after his death, Terry Fox's parents and siblings remain in awe of the young runner who hopped and skipped halfway across a continent.

"I believe," says mother Betty Fox at one point, "he was meant to do it." Whatever drove him to it, it still drives others, by the millions.
Weaver's loving documentary was inspired by a book about Fox for young readers, Run, by Mississauga writer Eric Walters. Walters's fictionalized account of Fox's life has already sold more than 100,000 copies, with every penny of royalty going to the cause and the book's publisher, Penguin, matching every dollar Walters commits.
"For me," says Walters, "it's a continuation of Terry Fox's legacy. Terry said he couldn't continue on and others had to run in his place.
"What gets to you is the emotional impact. I'm not doing this just for Terry Fox. I'm doing it for the mother I lost to colon cancer when I was four years of age."
What motivates Walters is the awareness that his mother's unfortunate death led to the rest of the family being regularly checked for early signs of colon cancer, a perfect example of those cancers that can be beaten through early detection.
"Cancer is still killing people, obviously," says Walters.
"But they are getting results."
Terry Fox has now been dead more years than he lived, and yet in many ways he is more alive each year.

Brady Shaw stands on the grass, catching his breath with his teammates, when he is asked the simplest question of all.
Who was Terry Fox anyway?
"He lost his leg to cancer," Brady says between puffs. "He was 22 years old. He ran across the country to raise money for cancer research. But he had to stop at Thunder Bay. He didn't make it."

Oh yes he did, Brady.
He made it, all right.


Rest in Peace Jeff. We miss you, but we will never forget you.


9/14/2004
Cindy, Joe and I want to thank everyone for their support during this difficult time. Over 800 people signed the guest book and the line at the Funeral Home went around the building. I’m sure Jeff had a smile on his face knowing that so many people came to pay their last respects. It was our goal to make sure the funeral service properly honored his memory and I believe we accomplished that objective. From the vast collection of photographs and some of his favorite things, the floral arrangements, the wonderful eulogies to the balloon launch, the things that made Jeff special were captured for all to see and hear.

The grieving process continues as we try to move forward without him. He fought the good fight, but the emptiness we feel in our hearts is beyond description and knowing he is in a better place provides some comfort. We are happy to have the special memories of our son, but they can never replace him. It was nice to see the Lakota Tomahawks Football organization dedicated the 2004 season to Jeff’s memory. I have created a link to his memorial page from the “links” section of this website.

I want to thank everyone that made a donation to The Jeffrey Thomas Hayden Foundation. So far over $5,000 dollars have been raised and we want to thank our friends and family for their generosity. One note… We need your help because we cannot figure out who made donations to the Foundation directly through Fifth Third Bank. It seems all donations made to the bank were deposited into the account but we were not given any record of who made a deposit. If you made a deposit to Fifth Third, please send me an email or letter, so your contribution can be properly recognized. The Foundation is set up as a non-profit organization and your gift is tax deductible. I will publish more information about the Foundation in the upcoming weeks.

Jeff was remembered by three special people during his service and I will publish those eulogies on the website once I have gathered them all up. Until then I want to leave you with a poem that Jeff wrote about a month after he was diagnosed.

Wishing - by Jeff Hayden – cancer victim

Once I could see the future for me,
but now it’s harder because of tragedy.
Now my family can see what’s to become of me,
but it’s still not the same, cause I’m now in a learning game.
It’s not like shame, or pain, but it’s more like rain.
Little by little it works its way up to fill the cup of life
my family has made to help me make my day.
People always say “hey son, it’s ok”
But they don’t know how I feel
and for my wish, I wish this wasn’t real.


Rest in Peace Jeff. We miss you but we will never forget you…


9/9/2004
Funeral Arrangements…

Visitation:
Friday night, September 10th between 6-9PM at the Hodaap Funeral Home located at 8815 Cincinnati-Columbus Road (Rt. 42), West Chester, Ohio 45069

Church Services:
Mass of Christian burial will take place at St.John’s Catholic Church in West Chester Saturday September 11th at 10AM.

Burial:
Brookside Cemetery in West Chester, immediately following the church service.

Gathering:
A Celebration of Jeff’s life will take place on Saturday, September 11th at noon at the Pavilion at St. John’s Church. Food and drinks will by provided.


Memorials:
We have established The Jeffrey Thomas Hayden Foundation, which is a non-profit organization in Jeffrey’s memory to raise money for worthy causes. Our goal is to establish a fund for an academic scholarship that will be awarded on an annual basis to a cancer survivor or family member of a cancer victim. Also we want to use the Foundation to raise money for other worthy non-profit organization such as Make a Wish, JDRF, and CancerFree Kids to help other kids and parents that must deal with life threatening diseases. More details on the Foundation will be posted in the near future.

Contributions can be made to: The Jeffrey Thomas Hayden Foundation, c/o any Fifth Third Bank or by mail to; The Jeffrey Thomas Hayden Foundation, 8655 Rite Track Way, West Chester, Ohio 45069


9/8/2004
I am saddened to report that Jeff passed away earlier today. He was at home with his family and was never in any pain. We are in the process of making funeral arrangements and once we know all the details they will be posted on the website by Thursday morning.

On January 14, 2004, Jeff was diagnosed with an inoperable diffuse intrinsic pontine glioma. The tumor was located in his brain stem and is one of the rarest and most deadly forms of cancer that you can imagine. Doctors from several leading institutions from around the country confirmed the diagnosis and the prognosis. Since his diagnosis Jeff has been a true fighter in every sense of the word. He held his head high and took everything the medical community could throw at it without any complaints. Now his battle here on earth is over and we are left to carry on.

Cindy and I want to thank everyone for their prayers, their support, the meals, running errands, watching Joe, walking the dog, watching the house and just being friends in a time of need. The list is endless and we hope we can repay you guys in the future.


Rest in Peace Jeff. We love you and will miss you, but we will never forget you! :)


9/1/2004
Update… As of 3PM today, Jeff has left the hospital and is resting comfortably at home. It will take a little while to get him stabilized after the ride from the hospital, but we are glad he is home. His condition is still very serious but we feel he is better off being in familiar surroundings.

Please understand that Jeff will not be seeing visitors until his condition is under control. The Home Health care team from Children’s Hospital is giving us a hand and they are super people to deal with. Also, we want to thank the staff at Children’s for taking outstanding care of Jeff. We are lucky to have such a first rate facility and wonderful people in this area.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


8/30/2004
Writing these updates is becoming increasingly difficult, but we understand everyone’s concern for Jeff and we want to keep you informed while protecting our privacy. I can usually judge when its time for an update by the number of times per hour the phone rings or the number of emails I get. Let’s just say it was time to do an update, so here it goes…

As of 6:00PM Monday, August 30th, Jeff is in the hospital. We took him into the ER late Friday night/early Saturday morning after he developed a very high fever. The situation escalated and he was admitted. His condition is a cause for concern and it is evident that the disease is taking its toll on Jeff. We would like to bring Jeff home, but have decided to wait until he is stable enough to transport. He is getting antibiotics and IV fluids from the doctors and lots of love from friends and family. Understand that I just don’t feel comfortable at this time sharing the details.

Prior to the hospital stay, Jeff completed his first cycle of the more potent chemo, but since we did not see any improvement in his condition we are stopping this particular drug. He struggled through the side effects and fatigue but did not realize any benefits. We are weighing our options and are looking at another type of chemo that has shown some promise in fighting this tumor. Also we have been trying some natural treatments that have shown some promise in other kids.

The people at Children’s Hospital are helping to make Jeff more comfortable at home, when that time comes. We are working with their home care Transitions/Hospice team. We feel it is important to keep future hospital stays to a minimum and we are outfitting our home with items required to make Jeff as comfortable as possible. Besides the wheelchair we have a hospital style bed and various machines designed to assist his needs. Having a mom that is a nurse has been a huge benefit to Jeff and has helped to keep him at home versus in the hospital. Jeff needs fulltime care and assistance and it is getting increasingly difficult to meet those needs.

Now more than ever Jeff needs your prayers. He’s still fighting but he needs some help. Thanks to our outstanding support network of family and friends, I can’t say enough about what it means to us.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


8/15/2004
Jeff’s condition has changed since the last update and he now needs a wheelchair to get around and is no longer able to stand up without assistance. He is halfway through his first round of the more powerful dose chemo cycle. At first it looked as though Jeff would tolerate this new drug fairly well, but the weakness and other recent changes are a cause for concern. We suspect that the chemo is wearing him down and the doctor put Jeff back on steroids a couple of weeks ago to try and control the symptoms and give Jeff a boost.

What a difference a week makes as we were looking forward to the start of school, the purchase of a new house, golfing and a family vacation. But this week we had to cut our vacation short for several reasons. First, it wasn’t easy getting around the resort with the wheelchair and clearly Jeff wasn’t having a good time. Second, the remnants of Hurricane Charley were scheduled to blow through and we decided it was better to go home than sit inside the condo and watch it rain.

Jeff is a fighter and even with everything this horrible disease throws at him he still finds a way to push on. He is a constant source of pride and inspiration to us. On a positive note, his hair has grown back and we are again weaning him off the steroids. We are evaluating his treatment program again to make sure we have looked at all the options.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


7/30/2004
By now some of you may have heard that things haven’t been going so good. I will try to summarize what’s been happening.

At the beginning of July, Jeff started having some problems with double vision and minor headaches. At first, this problem would come and go, but for the past two weeks it has been a constant issue. In addition to the vision, he is having some difficulty with his balance. Since the MRI on July 9th didn’t really indicate that the tumor was the cause of his problems the doctors started looking at other reasons, such as toxicity issues from his medicine. After several tests the cause seemed to be taking us back to the tumor, and another MRI was ordered on July 23rd. The results of that MRI showed that the tumor had slightly increased in size from the previous MRI and was the cause of his problems.

They call it “disease progression”, but for us it meant that the nightmare was coming true. The tumor is growing again and we are taking quick and aggressive action to try and bring it back under control. Jeff is back on steroids to try and control the symptoms and we spent many hours talking with our doctor about what to do next. We continue to look at alternative treatments, but for now we have chosen to enroll Jeff in a clinical trial. The one we chose is sponsored by the National Children’s Oncology Group (COG) and the National Cancer Institute (NCI). His treatment program will be monitored by the Children’s Hospital in Columbus, which is affiliated with The Ohio State University Medical Center, and his day to day care will still be overseen by his doctor at Children’s Hospital in Cincinnati. This gives him access to more powerful cancer fighting drugs, while keeping him close to home and in the care of his primary doctor.

He is currently on a low dose of steroids and starts his new chemo treatment next week. The doctors in Cincinnati and Columbus will be watching him closely to see how the new medicine reacts with his system. He will be evaluated by the doctors in Columbus every 3-4 weeks and will continue to make weekly visits to the clinic at Children’s Hospital in Cincinnati. We will continue the vitamin and protein supplements, but we have stopped the Temodar.

So, with all this happening what do you think Jeff did this past week? First he got in 18 holes of golf with his brother, played on the computer, burned a few music CD’s, competed in the weekly bowling league, played outside with the neighbors, spent countless hours hitting baseballs and golf balls into the new driving net, broke a few golf clubs (don’t ask), worked in a few doctor visits and scooped ice cream for 2 ½ hours at Cold Stone in West Chester as part of a fund raiser for Make a Wish. Thanks to everyone that came to Cold Stone to support Make a Wish and a special thanks to everyone that helped us out over the past couple of weeks.

It’s not a perfect world and we are facing a challenging period, but it’s comforting to know we have a large support group that has been there for us. Jeff and Joe are amazing kids and both of our boys continue to be a source of pride for us! Jeff is a fighter and he refuses to let this thing bring him down.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


7/20/2004
Hello friends and family! Sorry for the lack of updates, but things have been hectic over the past month with vacations, family activities, doctor visits, work and travel.

It’s hard to believe that six months have passed since Jeff was diagnosed and it’s safe to say that our lives have been forever changed. Keeping current with the updates has become a challenge as we deal with major decisions regarding Jeff’s treatment program. What to share with each of you presents its own set of challenges. We feel a positive message is important, while at the same time protecting our family’s privacy. With that said… here’s the latest update…

We spent The July 4th weekend in Ottawa, Canada visiting friends (Brad, Mary, Taylore, Brady & Caroline). The boys had a great time visiting their buddy, swimming, golfing and playing in the park. We went to a CFL (Canadian Football League) game and saw the Ottawa Renegades beat up the Edmonton Eskimos. The Canada Day celebration was the highlight of the trip. We went down town Ottawa to view the formal “Changing of the Guard” and saw the Royal Canadian Mounted Police put on an outstanding equestrian show. We walked through the parks and saw the historic buildings that combine to make Ottawa a beautiful city. The evening was capped off with a fireworks display that we viewed from the balcony of the Westin hotels’ Penthouse suite, courtesy of Mary’s contacts! Thanks to Luke, Steph and Mary for organizing a great day and letting the kids hang out in the pool! While in Ottawa we visited the people at the Canadian Cancer Research Group that are overseeing Jeff’s vitamin and protein supplement treatment program.

On the way back from Canada we stopped for the night at Niagara Falls. The view from the Canadian side was awesome! We took a boat ride on the famous “Maid of the Mist” and a took a walking tour behind the Falls. If you haven’t been to the Falls lately, I highly recommend it, and 2-3 days is more than enough time to see everything.

After we returned Jeff was supposed to go to “Camp” for a week, but it was decided that he not go after he developed some symptoms (double vision, headaches, etc.) that we wanted to address. An unscheduled MRI was done on July 9th to find out if the tumor was causing the problems. The results produced both good and bad news. The good news was that the tumor did not appear to be growing, the bad news is that we now need to find what is causing the problems. His doctors are reviewing his vitamin and medicine levels and running tests to see if they could be causing the problem. As of today we still do not have an answer and Jeff has been fighting through some double vision problems that are causing concern. He sees the doctor this week for a follow up visit.

Amid all the challenging issues, Jeff stays active. He bowls, golfs and plays with his friends. If he could have his way we would be on the golf course 12 hours a day! He just completed building a 6ft high rollercoaster out of “connects” that he is very proud of. I will try to post some pictures later this week.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


6/23/2004
Revised Update…

It seems my math isn’t so good at one in the morning…

Five months (not six) have passed since Jeff was diagnosed with his brain tumor and I can tell you that it’s been an emotional and mentally draining period. We started using this forum to keep our friends and family informed on Jeff’s progress in his fight against this horrible disease. Over 125 people are on the mailing list and hundreds more check the site every month to get the latest news and view the pictures. We do our best to maintain a positive and upbeat message, but some things we like to keep private. I hope everyone can accept that.

In the last update I mentioned that Jeff had a MRI scheduled for this week. On Monday morning Jeff went in for his post radiation MRI and on Tuesday we reviewed the results and treatment options with our doctor. So, let me get to the point… The tumor has not gotten any larger, nor has it gotten much smaller. Of course we had hoped for a better report, but knowing that the tumor is not growing is certainly good news. Jeff’s overall condition has improved slightly over the last month and the doctors are pleased with his progress.

The plan is to stay with the chemotherapy treatment and the vitamin and protein supplements for as long as Jeff shows improvement. Since Jeff has tolerated all the medications extremely well, we are considering a slight modification to boost the chemo program and a decision on this will be made next week. The next MRI is scheduled to take place in 2-3 months.

We have a vacation planned for the 4th of July weekend and it will be good to visit with old friends.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


6/23/2004
Six months have passed since Jeff was diagnosed with his brain tumor and I can tell you that it’s been an emotional and mentally draining period. We started using this forum to keep our friends and family informed on Jeff’s progress in his fight against this horrible disease. Over 125 people are on the mailing list and hundreds more check the site every month to get the latest news and view the pictures. We do our best to maintain a positive and upbeat message, but some things we like to keep private. I hope everyone can accept that.

In the last update I mentioned that Jeff had a MRI scheduled for this week. On Monday morning Jeff went in for his post radiation MRI and on Tuesday we reviewed the results and treatment options with our doctor. So, let me get to the point… The tumor has not gotten any larger, nor has it gotten much smaller. Of course we had hoped for a better report, but knowing that the tumor is not growing is certainly good news. Jeff’s overall condition has improved slightly over the last month and the doctors are pleased with his progress.

The plan is to stay with the chemotherapy treatment and the vitamin and protein supplements for as long as Jeff shows improvement. Since Jeff has tolerated all the medications extremely well, we are considering a slight modification to boost the chemo program and a decision on this will be made next week. The next MRI is scheduled to take place in 2-3 months.

We have a vacation planned for the 4th of July weekend and it will be good to visit with old friends.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


6/12/2004
School’s out and summer vacation is underway!

Not much has changed since the last update regarding Jeff’s condition. He did start his second round of chemo and his white blood cell count remains within limits. He gets a little tired at times, but that’s expected. The next MRI is scheduled for the week of June 21st and I can’t even begin to describe the anxiety that we feel.

The people at Make-a-Wish invited our family to a Reds game last Sunday. The seats were great and our family got to enjoy a great day at the ballpark. Jeff and Joe got to meet Reds owner, Carl Lindner and at the end of the game, Reds coach Tom Hume, tossed a ball into the stands that ended up in Jeff’s glove. I can say that was easily the highlight of the day.

Jeff and Joe stay busy with sports and playing with friends. The boys signed up for a weekly bowling league and a golf league. Jeff recorded his first official ‘birdie” last week at Vista Verde golf course on hole #4, which is a 117 yard par three, over water. He hit a seven iron onto the green and sunk a ten foot put. We have witnesses!

We plan on taking some time together as a family this summer to see some sights and visit some old friends.

We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


5/28/2004
The news continues to be “cautiously optimistic” regarding Jeff’s progress.

He has nearly completed his first 28 day cycle of chemotherapy. The side effects from the Temodar have been minimal, except for the first day when he got sick after taking the chemo pills. The doctor prescribed some anti-nausea medicine and he has been ok since. His blood work came back from the lab this week and the doctor is happy to see his white blood cell count finally stabilize after dropping for two consecutive weeks. Jeff will start his second 28 day cycle after the Memorial Day holiday as long as the white blood cell count remains within the acceptable range. He continues to take the vitamin and protein supplements and we feel this has helped keep the side effects from the chemo to a minimum. His next MRI is in June and we will evaluate our options once we see the results of his latest scan.

One more week of school and then onto the 6th Grade Graduation! Jeff and Joe are excited that the summer break is almost here. Jeff spends his free time hitting golf balls and tossing baseball. I can see Jeff’s arm strength getting better each week and his fastballs are starting to hurt my hand again! It’s hard for him to sit and watch the games knowing he wants to be part of the action. Who knows… maybe he’ll get the chance to play again, time will tell, but it sure feels good to be thinking about it.

Joe has been busy with his baseball team and school. It’s been a struggle to find time to get everything accomplished. Between parties, school functions, charity events, baseball, house hunting and searching for treatment options, our calendar is full. Jeff and his mom participated in two fund raisers last week. One was for the American Cancer Society and the other was for Make a Wish Foundation. Both events were walk-a-thons and it was fun to be part of them. Jeff walked (ran) the three mile course with his friends.

The boys got to go to a few Reds games last week with family and friends. They got to see two wins over the Astros and were at the game to see the “Rocket” Roger Clements get beat! I put some new pictures up on the web site, check them out. As you will see, we had some great seats! They also had fun at Rocco’s birthday party. The go-karting was fun and I didn’t really mean to spin Jeff out on the last lap!

Thanks to “Aunt Kathy” for organizing the Reds game and getting the boys on the field for batting practice and us into the luxury box. I have one word to describe the experience we had… Outstanding…

This past week we had a going away party for our neighbors Mary, Brad, Brady, Taylore and Caroline. We will miss you guys and we look forward to visiting you in your new home in Ottawa, Canada this summer! A special thanks to Beth for organizing the quilt that was given to Jeff, what an awesome thing!

Enjoy the holiday weekend and make sure you spend some quality time with your family.
We pray everyday for a positive outcome and we appreciate everyone’s support. Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


5/14/2004
Good news… After several failed attempts, Jeff has finally been weaned off the steroids.

This allows us to move onto the next step in Jeff’s treatment plan. On Thursday, May 6th we started Jeff on a chemotherapy drug called Temodar, which he takes 3 pills per day for 5 days in a row, followed by a 23 day break. The 28 days required to complete this process is referred to as one chemo cycle. The plan is to repeat this cycle several times and then get a MRI sometime in June to measure the results. If the tumor is smaller or remains stable, then we will continue the treatment. However, if the tumor gets larger, then we will switch to another form of treatment.

Temodar is taken orally, which means that we do not need to make many trips to the clinic. In addition to the Temodar, Jeff takes a daily regime of vitamins and protein supplements. We feel this combination is the best thing available to us at this time. Should Jeff’s condition change, then we will alter his treatment plan.

Jeff remains active and continues to do well in school. This past week he was able to join his class on a visit to Ridge Jr. High, which is the school that he and Joe will attend next year. He continues to fight through the problems caused by the tumor and the courage he has shown is truly an inspiration to us.

One more thing… Wearing a hat has become a symbol for Jeff. It’s a quiet reminder to all of us that he fights this battle everyday. For a kid fighting cancer, wearing a hat indoors is not a sign of disrespect. It’s a way to cover up the side effects and damage done from weeks and months of radiation and chemotherapy treatments. Cancer takes a toll on the mind and body that can only be understood by a few people. His hair is gone, his weight has fluctuated and he is on some very powerful drugs. He takes over 20 pills per day along with his protein powder. He must visit the hospital every week for a checkup by the Doctor and to have blood drawn. So, the next time you see a kid wearing a hat indoors, do not be so quick to judge.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


4/30/2004
It has been two weeks since the last update and the news remains positive. Jeff is still in the process of weaning off the steroids. We had hoped that we would have Jeff off of them by now, but his body keeps fighting the process. Two weeks ago we had him off for four days and then he started having headaches and other symptoms, so the doctor put Jeff back on the drugs. This week we began the process of weaning him off the steroids again, and today marks the fourth day. We will keep our fingers crossed.

Being steroid free would be a milestone, because it allows us to start the next phase of Jeffrey’s treatment. We are discussing a program with our doctor that combines the vitamin and protein supplement program that he is currently on, with chemotherapy drugs that have shown some promise in fighting Jeff’s type of tumor. The chemotherapy will be accomplished by taking pills, which means that Jeff will not have to go to the clinic everyday for his treatment. In addition, we are making changes in his diet that will help his body attack the tumor.

Jeff has started losing some of the extra weight and puffiness that was put on from the steroids. His energy level is good and he is doing well in school. His hair has not yet started to grow back, but that should begin in the next couple of weeks. He remains active by bowling, golfing and playing with his friends.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


4/17/2004
The news this week continues to be positive. On Monday Jeff got a tour of Paul Brown Stadium, including a visit in the locker room, courtesy of former Bengal Robert Jackson. The facility is awesome and Jeff got to see some of the Bengal’s working out and getting ready for the upcoming season.

Report cards came home this week and Jeff and Joe did excellent. All “A’s” and a couple of “B’s”. As I write this update, Jeff and Joe are enjoying the nice weather by golfing with their grandpa. I hope they don’t wear him out!

It looks like we may finally have Jeff off the steroids. Its been several days without any complications and hopefully this continues. The results of his blood work looked great and we are encouraged that Jeff is responding favorably to his protein and vitamin supplement program. The search for an effective treatment plan is an exhausting process, but we are committed to finding the one that works for Jeff. This week the search took us to Canada where we had a positive meeting with a group dedicated to cancer research.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


4/11/2004
Happy Easter!

The good news this week was that Jeff won the March Madness Office Pool. The bad news is that Jeff is still on steroids.

Steroids serve an important purpose in controlling the swelling caused by brain tumors and the benefits they provide usually out weigh the negatives. However, there comes a time when the patient needs to get off the steroids and allow the bodies own defense system take over. That time is now, but it seems the transition period is taking longer than we had hoped. We have tried several times over the past several weeks to wean Jeff off the steroids, but we have been unsuccessful.

This resulted in another visit to the clinic, in which we were reassured by the doctor that the weaning process takes time. They are confident that Jeff will be off steroids soon and the side effects (weight gain and moodiness) will reverse themselves over time.

The search for an effective treatment plan is an ongoing process. In the meantime, we will continue with the vitamin and protein supplements in order to restore Jeff’s immune system and build up his strength.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


4/4/2004
This was our first complete week without visiting any doctors or hospitals! That’s because we spent last week cruising the Caribbean on the Carnival Glory. We were joined on the cruise by Jeff and Joe's grandparents. Our ports of call included Key West Florida, along with Belize, Cozumel and Progresso Mexico.

Jeff and Joe wasted no time making friends and spent the majority of their free time swimming or playing basketball on the sports deck. The weather was great, the ship was awesome and everyone had a great time. When in port, we ate cheeseburgers at Jimmy Buffetts “Margaritaville” restaurant, took a ride in a real submarine and did some shopping and sightseeing.

But unfortunately, spring break is now over and its time to focus on other things. Jeff is still on a small dosage of steroids, but the goal is to have him completely off within the next couple of days. Nothing else to report this week.

NCAA Final Four… If UConn wins, Jeff will be tied for first in the office pool. If Georgia Tech wins, Jeff is tied for second. Not bad, since we had 87 people sign up for this year’s pool. Check out www.ritetrackracing.com/ncaa for more details.

Thanks to our friends and family by watching the dog and the house.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


3/27/2004
On Thursday Jeff had his first MRI since completing the chemo and radiation treatments. We had been told not to expect too much, since the tumor and surrounding area are still aggravated by all the radiation. The results of the MRI were mixed, but not unexpected.

The purpose of this MRI was to see if tumor growth was stopped or slowed. What the doctors saw was a slight reduction in the overall size of the tumor and that is certainly good news. Of course we were hoping for more, but you take what you can and move on. The MRI showed some other side effects of the radiation, but nothing that is of great concern at the moment. Neurologically, Jeff is doing great. There are no symptoms and he hasn’t had any headaches all week.

The next MRI is scheduled in about 2 months and that’s when we hope to see the true maximum benefit of the chemo and radiation treatments. Jeff will get an MRI every three months after that to monitor the tumor and surrounding area.

In a couple of weeks we will sit down with our doctors and advisors and discuss the options for the next step in Jeff’s treatment plan. Until then we plan on doing some fun things over spring break, starting with a Caribbean cruise. It will be good for everyone to get away for a while. As you can imagine Jeff and Joe are excited about the trip.

Other notable things that happened this week… Jeff decided to shave his head, he thinks it looks cool and we all agree. Also, Jeff got a visit from the “Make a Wish” people. He sat with them for several hours talking about what he wants to wish for. He made several wishes and they will let him know in the near future if any of them can be granted.

Thanks to our friends and family this week for helping us out. The meals were great and thanks for watching the dog and the house while we are cruising the Caribbean. On a positive note, we helped raise some money for Cancer Free Kids from our NCAA office pool. It always makes you feel good when you can help someone else out. Special thanks to Princeton Bowl for donating the money taken in from the “Mom’s Morning Out” league. The money will be donated to a worthy organization dedicated to fighting cancer in kids. You guys are great!

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


3/21/2004
This was a good week. Prior to heading to California we stopped by Children’s Hospital on Monday for a checkup. Jeff’s blood work looked good and his energy level is returning to normal. No headaches or any related problems to report, which is certainly good news compared to last week. The only side effects to report are hair loss from the radiation and chemo and weight gain from the steroids.

We flew to California on Wednesday and spent the entire afternoon on Thursday at Children’s Hospital of Orange County (CHOC) meeting with doctors. We reviewed and discussed the treatment options available to Jeff. Surgery is not an option at this time and finding a way to attack the tumor from within is still the best option. So we will continue with the vitamin and protein supplements and explore a variety of options available to us. We are also looking at some natural and traditional medicines that have shown positive results while keeping side effects to a minimum.

This week was filled with fun things. Jeff spent the time in California swimming and watching a ton of basketball games on TV. The best treat came on Friday when Jeff and his brother got to hang out all day with the NHL Anaheim Mighty Ducks. The day started with a trip to the Pond, which is the name of the arena where the Ducks play hockey. The boys got introduced to the players by Head Coach Mike Babcock in the locker room and then got to hang around for the morning practice. In addition to meeting the players, they got to meet the other coaches, trainers, and equipment guys and got to see everything required to get a team ready to play.

The boys got to sit on the bench during practice and pre-game warm-ups. The players were great and spent quality time with Jeff and Joe talking and signing autographs. I have been fortunate to be around many professional athletes from many different sports, but hockey player’s rank right up with the best when it comes to giving of their time without hesitation. The boys were treated to great seats to watch the game and some neat gifts to top off the visit. The Ducks lost, but that didn’t matter, because the experience was awesome. The players, coaches and everyone in the Ducks organization were great to the boys and our thanks go out to everyone involved with making the day special.

The goal now is to get Jeff weaned off the steroids and this process may take another 1-2 weeks. This will help return his body weight back to normal and reduce the puffiness in his face and belly. Jeff’s hair is almost all gone, but it won’t be long before it comes back. Jeff has a MRI scheduled for later in the week. We have been told not to expect too much, because the tumor and the surrounding area may still be swollen and aggravated from the radiation. However, the waiting game can take its toll on your emotions.

I notice that in times of personal crisis people turn to a combination of Faith, Family and Friends. We are blessed to have all three.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


3/14/2004
Jeff had a roller coaster week. It started out with a March Madness basketball game, followed by a bowling party with friends last Sunday, proficiency testing at school on Monday and Wednesday, an overnight stay at Children’s Hospital on Friday, and ended with him winning a bowling tournament on Sunday.

The down side this week was that Jeff was admitted to the hospital on Friday morning after he came down with a fever and sore throat. His energy level was down and a blood transfusion was required to get his hemoglobin back within limits. Along with his fever, Jeff had a few bad headaches. Jeff was given antibiotics to get the fever under control and the doctors upped his steroid dosage to help with the headaches.

The upside is that Jeff was released on Saturday and we are pleased to say his energy level is back up and he was able to bowl in the annual COF Tournament at Colerain Bowl. He won his age bracket and his brother took second place and everyone had a great time. Jeff watched a lot of basketball on TV this week and was happy to see the Bearcats win.

Now that Jeff is finished with the radiation and chemo treatments, he has begun the process of rebuilding his immune system. This requires taking a combination of vitamin supplements and customized protein powder to continue the work of shrinking the tumor. His progress will be monitored monthly through routine blood work and analysis. His doctor at Children’s will only need to see Jeff occasionally for the next several months and the follow up MRI will take place in about 2 weeks.

We have scheduled several trips in the upcoming weeks with various experts to map out a treatment plan for Jeff. On Wednesday we are traveling to LA to visit a doctor that specializes in the type of tumor that Jeff has. I know a lot of you read the article on Sunday in the Cincinnati Enquirer regarding a new surgery technique that was developed by a doctor at Children’s Hospital. Although the article is encouraging and offers hope to some patients that previously had been told they had an inoperable tumor, it doesn’t look like this procedure can help Jeff, but we plan on asking about it the next time we are at Children’s.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


3/7/2004
Chemo and Radiation treatments are complete! Friday was an emotional, fun filled, good news day for everyone, which capped off a pretty good week. Here’s what happened…

Our friends Maureen and Denise had an idea to get a limo for Jeff’s last day of treatments. They enlisted the help of more friends and the plan for the limo became a reality. More on that in a minute…

Jeff’s classmates surprised him on Friday morning by wearing hats to school. Jeff’s hair has been falling out, so the hat became a symbol of what he is going through. Normally, students are not allowed to wear hats in school, so they saw this as a chance to show their support for Jeff and bend a few rules. Pictures will confirm that some teachers also joined in!

The limo showed up at school in the morning and his classmates and teacher came out to see Jeff off and show their support. Then the limo, which was stocked full of Orange Slice, candy and snacks, took us to Children’s for the last treatment. Everything went smooth at the hospital and Nurse Angela drew the lucky straw to be the one giving Jeff his last dose of chemo. Then it was time to leave for the final radiation treatment. As we pulled away from the hospital, Jeff opened the moon roof and stood up to wave to all the nurses that had gathered at the window of the fifth floor. The short trip went smooth and Jeff was greeted at Precision Radiotherapy by more family, friends, and the staff that have been taking care of him the past 6 weeks. Radiation went smoothly and his doctor stopped by to see Jeff and the staff gave him a new CD player and a bag of his favorite candy.

Then we took the limo out again, this time stopping for lunch at the Red Robin and cruising through the neighborhood on the way home. It was obvious that Jeff and his brother liked the special treatment and they cranked up the stereo and acted like big shots.

The good news is that Jeff’s white and red blood cell count stayed within limits and a blood transfusion wasn’t required. When we started treatment 6 weeks ago, we were told he would need at least one and possibly two transfusions, but in the end, none were necessary. He had a few headaches this week, so the steroid dose will remain the same until the doctors are comfortable with lowering it.

Jeff’s doctor gave him the best news on Friday when he told him he could play in his basketball game on Saturday. Why is this big news? Because when we started the treatment process in January we were told that sports for Jeff was done and that kids normally are not in any kind of physical condition after 6 weeks of chemo and radiation to handle this. But Jeff has been going to school, shooting baskets, hitting golf balls and tossing baseball for a few weeks now and the doctor could see no reason to make him stop. Jeff did play in his basketball game on Saturday and his team won, which allowed them to advance in the tournament.

It’s hard to believe the daily visits to the hospital are no longer required. The next phase of Jeff’s treatment is already underway, which is to rebuild his immune system. I will give you more information on this in the next update. The situation is still serious, but we are encouraged with his progress.

Special thanks to the “Mom’s Morning Out” bowling league, Tim at Truly Reliable Limo, the six grade class, teachers and staff at Freedom Elementary and everyone involved for making Friday a very special day. Special thanks to Coach Mike for making Jeff feel like he is part of the team again. There is no better reward as a parent than to see your child smile.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


2/28/2004
Jeff is almost finished with his chemo and radiation treatments. He has completed 25 out of 30 scheduled treatments and if everything goes well this week, he should be finished. Jeff continues to do well and is making steady progress.

His steroid dosage was reduced again this week and he is at a fraction of the original dosage. He is still losing a little hair, but since he is always wearing that Ohio State hat, nobody can tell. His weight has stabilized and we expect the puffy cheeks to start going down in the next 3-4 weeks. The doctors have been watching his white and red blood cell counts, but after falling the previous two weeks, they seem to have stabilized. If they drop any further then Jeff will need a blood transfusion to bring the counts back within the normal range.

Jeff was able to attend school part time every day last week, and even with everything he is going through, he has been able to keep up with his class. He also went to his brother’s basketball practice and game. He warmed up with the team and sat on the bench next to Coach Mike. He told me his job was to make sure coach didn’t get any technical fouls called on him. We went on a trip to the batting cages to watch his brother hit baseballs. While Joe was in hitting, Jeff and his grandpa Eddie played arcade games and offered advice to Joe. The weather has been great this week and Jeff enjoyed the outdoors playing with his friends and got in a few games of basketball.

Jeff has one more week of chemo and radiation and he burned a new CD to listen to while he undergoes treatment. He thinks the technicians at the treatment center will like this one better than the old one. He is planning on attending school again part time this week, along with enjoying some family activities. As we wrap up this phase of his treatment program we begin the discussions regarding what’s next. We have met with, and been in contact with, various doctors and experts to help us decide what’s best for Jeff. It’s amazing how much information is out there. We will keep you updated.

We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


2/21/2004
Jeff is two thirds of the way through his chemo and radiation treatments, with 20 out of 30 sessions complete. Jeff is doing well and his doctors are very pleased with the progress. Most of the symptoms caused by the tumor seem to be under control and Jeff is starting to enjoy normal activities.

His steroid dosage was reduced again this week and he is now down to 25% of the original dosage. We started to see some side effects this week, with a little hair loss from the chemo and radiation and some weight gain from the steroids. His white and red blood cell counts are starting to fall, but are still within the limits. We will continue to keep an eye on this.

Jeff returned to school for two days last week and everyone was glad to see him. He also went to his brother’s basketball game and enjoyed the nice weather we had this week. The big surprise happened on Wednesday night. Jeff got to meet NASCAR Champion Matt Kenseth, driver of the #17 DeWalt Tools stockcar, at the Cyclones hockey game at US Bank Arena. Besides having dinner and getting autographs from Matt, Jeff got to join Matt on the ice to drop the puck to start the game. I put up some pictures in the PHOTOS section under February.

Jeff has two more weeks of chemo and radiation. He is planning on attending school part time this week, along with enjoying some family activities. We pray everyday for a positive outcome and we appreciate everyone’s support.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


2/14/2004
Happy Valentine's Day Everybody!

Jeff has reached the half way point in his chemo and radiation treatments, with 15 out of 30 sessions complete. This was a good week for Jeff and his doctors are pleased with the progress. The symptoms caused by the tumor seem to be under control and Jeff is being encouraged to resume some normal activities, such as going back to school part time and getting some exercise.

His steroid dosage was reduced twice last week and he is now down to one third of the original dosage he was taking four weeks ago. This is a very good sign that the treatments are working to shrink the tumor. There were no side effects this week, except a little weight gain, and his vitals and blood work are still within the limits set by the doctors. They are watching his white blood cell count because it started to drop, but this was expected. This means that Jeff’s immune system is losing its ability to fight off infections, so we need to keep an eye on this.

Jeff stayed busy this week. Besides keeping up with his schoolwork, he attended church, went to a Mighty Ducks hockey game, bowled a couple of times and visited his basketball team’s practice. His bowling scores are going up and his jump shot is starting to come back! Jeff wore his new autographed Anaheim Mighty Ducks jersey at the hockey game that Coach Mike sent him.

His classmates sent home a ton of Valentine’s Day candy, which was greatly appreciated. Jeff returned the good deed by sharing the goodies with his nurses and doctors. I think he scored some bonus points!

Jeff has a busy week ahead of him. Besides being scheduled to receive 5 chemo and radiation treatments, he is planning on going to school part time and attending a sporting event. We have a little surprise for Jeff this week. Hopefully all goes well and I will update you next week on how things went.

We appreciated the extra help given to us this past week and it’s good to have friends you can count on! Thanks.

Never give up hope and thanks for keeping Jeff in your daily thoughts and prayers.

Peace :)


2/6/2004
Another week of Chemo and Radiation treatments are in the books! Jeff has completed 10 out of 30 treatments and the doctors are pleased with his progress. Luckily there were no snow storms or traffic problems to contend with and Jeff was able to make it to all of his appointments on time. The only snafu this week was the radiation machine broke down right at the end of his treatment on Thursday, but after a short delay the technicians were able to reboot the system and finish the treatment.

Jeff was feeling good enough to go to the UC/Charlotte basketball game last Saturday. We had great seats and watched an exciting game, too bad our team lost. Jeff was bummed, to put it nicely, but he and his uncle had a good time yelling at the ref’s. We all watched the UC/X game this past week on TV, again its funny how those ref’s keep helping the other team! :)

Jeff continues to handle the chemo and radiation well enough that the doctors again reduced his daily dosage of steroids. As I said before, this is a good thing! The combination of chemo, radiation and steroids are doing a good job of controlling the symptoms caused by the tumor, but the actual long term positive effects of his treatment will not be known for several months. His vitals and blood work continue to look good and the doctors are happy with his progress.

The side-effects were minimal this week, which is an encouraging sign. There was some concern earlier in the week that he was losing weight, but those fears were short lived. Steroids have a funny way of making you want to eat and eat and eat. They also make the body retain water, which adds to the weight gain issue, but these side-effects are temporary and usually go away once Jeff is completely off the steroids.

The doctors are now encouraging Jeff to get out and do things. His balance and coordination are nearly back to normal and its time to get some exercise and have some fun. Jeff has been keeping up with his school work and actually looks forward to the daily homework folder that his teacher prepares for him. He stays busy before and after his daily treatments by doing schoolwork, drawing, reading and watching the videos that his teacher sends home. Now we can add in some fun things to do, along with a little exercise.

I added a few more pictures to each of the existing categories this week. I hope to have some more pictures up within the next week. I added some interesting shots Jeff’s radiation and chemo treatments to the January pictures. Keep checking the web site for updates.

Thanks to everyone for their support and assistance this week, you will never know how much we appreciate it! We continue to receive emails, cards and letters from friends, family and complete strangers, all offering us support. His journey has just begun, thank you for keeping Jeff in your daily thoughts and prayers.

Peace :)


1/30/2004
The first week of radiation and chemotherapy treatments are now behind us. We managed to survive two snow storms, avoid all the traffic jams and worked through a few scheduling snafus, all without missing any appointments. Thanks to our friends for giving us up to the minute highway reports before we head out! Besides listening to local traffic reports on the radio, we tap into the on-line ARTIMIS system and check reports posted with the OnStar system. It’s a hi-tech world and we use everything at our disposal to avoid traffic backups.

You ask why is that important? Because Jeff needs to have his radiation treatment within one hour after having his chemotherapy treatment to achieve the best results. It takes 30 minutes to get from Children’s Hospital to Precision Radiation in West Chester, so having everything go smoothly is critical.

The doctors were pleased with Jeff’s progress this week and decided to reduce his steroid dosage a little. This is a good thing because the sooner we get Jeff off steroids the better. The doctors warned us about some of the side effects of taking steroids, such as a huge appetite and excessive weight gain, but we haven’t seen that yet and Jeff’s weight has stayed the same. The chemo on the other hand is causing some problems with nausea and queasiness that makes him sick to his stomach and he is a little more tired than normal. The mood swings are still happening, but are becoming less of an issue. They give us pills for everything, but we are trying to minimize the extra drugs and Jeff seems to be handling it well.

The whole process of getting chemotherapy and radiation treatments takes an average of about 4 hours round trip. We leave the house at 11:30 and get back by 3:30 Mondays and Thursdays take a little longer because Jeff gets checked out by his doctor at Children’s Hospital and they make sure all his vital signs are strong. They check his weight, height and blood pressure everyday, and check his blood work only on Monday and Thursday. Every Tuesday he gets checked out by the radiologist, but it’s a simple exam that doesn’t involve any needles!

Speaking of needles… Last Friday night, Jeff had outpatient surgery to install a MediPort in his chest. This will allow easy access for the doctors and nurses when they need to draw blood and will make it easy to give him his daily chemo medicine. It sits below the skin and eliminates the need to get daily IV’s in his arms. Before they access the port they use a numbing cream on the area so it doesn’t hurt. The port stays accessed from Monday through Friday with a little tube that gets coiled up and covered with a waterproof bandage.

Since Joe was off school on Friday he went with us to see everything his brother goes through. Joe’s reaction… “I was shocked by everything that he goes through everyday.” I will post some pictures of Jeff getting his radiation and chemo treatments.

Here’s a message from Jeff… “I want to thank everybody for sending me cards, letters, gifts and emails. I miss everyone at school and I can’t wait to get back.”


1/27/2004
January 14, 2004 was a day that changed our lives. Since school started last fall, Jeff had been complaining about headaches, which everyone, including his doctor, thought were migraines. In late December, we noticed that Jeff was having severe mood swings, loss of coordination and clumsiness. After a visit with our Pediatrician and two MRI’s at Children’s Hospital, Jeff was diagnosed with an inoperable malignant brain tumor. We now understood why Jeff was having problems, but finding out your child has a brain tumor is a gut wrenching, soul searching experience.

Jeff’s care is being overseen by a team of physicians and specialists from Children’s and University Hospitals. They have consulted with the experts at St. Jude’s Children’s Research Hospital and Duke University Medical Center, both of which specialize in pediatric brain tumors. All agree with the diagnosis and treatment program.

Treatment for this type of tumor involves taking steroids to control the swelling inside the brain, along with a 6 week regiment of Radiation Therapy. Our doctors recommended that we also put Jeff on a Chemotherapy program to enhance the Radiation treatments. This involves a trip to Children’s Hospital everyday to get a 30 minute infusion of chemo then hopping in the car and getting him to his daily radiation treatments at Precision Radiology (part of University Hospital) in West Chester.

Prior to the diagnosis, Jeff’s world was spinning out of control. The drugs are helping, and we can safely say that he is doing better and responding well to the treatment programs. We have a long journey ahead of us and we appreciate all of your support and prayers.

Check back to the website for weekly updates and pictures documenting Jeff’s progress.