Wylie's Day Foundation


	Our Journal February 4th, 2007 Dear Friends and Family, Recognizing that way too much time has gone by without an update from the Strotbeck family, the solution is to apologize and correct that as we embark on a new year. First, we’d like to say thank you for your continuous support of the Wylie’s Day Foundation and your love and friendship. We wish you all the very best in 2007 and hope you had moments to reflect on the past year, to cherish those special times and think about moving forward. We received many beautiful cards reflecting your growing and changing families. Personally, I have to admit holiday time seemed to come around quickly, as it often does, and I felt a bit smashed up against a brick wall. Thinking that this would be an easier chunk of time to plow through because it had been 1 _ years since we lost Wylie was a fallacy and I found myself unable to shop, unable to get holiday cards out, unable to reach out to all of you. For that, I am truly sorry. On a brighter note, the Foundation was able to make major contributions to the Wylie’s Day Fund at Children’s Hospital of Philadelphia and the Neuro Oncology Fund in the area of medulloblastoma research as well as to the Pediatric Brain Tumor Consortium (PBTC) for clinical trials leading to cutting edge discoveries. Additional funding was provided for books, DVD’s, CD’s and programs in the Child Life department at CHOP and the Ronald McDonald Camp, allowing oncology patients a chance to experience some fun. In a little more than a year, Wylie’s Day Foundation has raised over $162,000 of which $98,000 has been distributed to the aforementioned research groups. We will continue to distribute funds to PBT research throughout this year. Top pediatric oncologists continue to search for cures everyday and it becomes more evident as we become more involved, that funding is crucial. We are currently working with the PBTC to start a fund raising arm know as the PBTC Foundation to subsidize funding from the National Cancer Institute. (NCI). Most unfortunately, funding to this group has been drastically reduced due to cuts from the government programs. This new foundation has its kick-off event at the Carol Schwartz Gallery in Chestnut Hill on March 21st. If anyone is interested in attending, shoot us an e-mailand we will provide more information. Carpe Diem Make a memory, tomorrow is not promised. Jan 10, 2006 Seize The Day "Tis only in their dreams that men will truly be free, Twas always thus and always thus will be" - Keating Dear Family & Friends, That's Mr. Keating by the way, the main character from "Dead Poets Society" a movie starring Robin Williams, released probably a decade ago, that we happened to come across over the holidays. A great movie if you've never seen it. Though we always knew Seize the Day was a statement in the flick I was surprised that it was the thread so deeply woven into the theme. We want to wish everyone a belated Holiday greetings and a Happy New Year. The New Year came upon us and there was nothing we could do to stop it! The year gone by was difficult but we want all of you to know that we are thankful for the friendship, the love and the support that has enabled us all to face each new day. Our lives will never be the same - but then whose life is...?. Every day something happens to each of us that alters our direction, our perception, our spirit if only a little bit. We experience wins, we experience losses, we make choices. Hopefully the choices we make are positive. Life on this earth is certainly short. Regardless of what your beliefs are about life...and I contemplate this daily... do we move on to some other level or is this carbon matter container the full extent of our existence? Who knows, who cares - the mission is the same - make the best of today. We miss our son Wylie ooohhh soooo much! Our grief takes on different form as the weeks pass by. I suppose currently it's it mostly sadness - sadness that we cannot share in the beauty of our lives now! But Wylie lives on in our hearts and the hearts of all of you too. And we will continue to build the memory of Wylie through good deeds and helping others. I have no doubt that Wylie's name, his inspiration, his strength and courage will be remembered long after I've been put to pasture. The Wylie's Day Foundation is off to a great beginning. We've raised just over $ 100,000 through 2005, double our expectations. Again we thank all of you that have helped achieve this milestone. These funds were raised through direct donations and the efforts of many who care. A basketball tournament was held in Wylie's honor that raised funds. Young cousins sold cider and lemonade on the corner in the fall and raised over one thousands dollars. The Battle of the Bands raised twice as much as expected. We have distributed about half of the funds so far primarily to CHOP for neuro-oncology research targeted at medulloblastoma and to the PBTC (Pediatric Brain Tumor Consortium) which is a centralized research group working with the top ten PBT hospitals nationwide. These funds too were designated for medullo research looking for the DAY there is a cure. Much of the research currently is pointing at genetic markers and cell communication or I should say miscommunication. There is evidence that communicators in tumor cells can turned off - thereby forgetting to replicate and hence they will die. It is critical to get funding for PBT research because the funding does not come from the drug companies or the Feds. Why you may ask? Simple - there just are not enough kids suffering with brain tumors to warrant the allocation of resources. Yea OK - walk in my shoes!!! And lastly we purchased dozens of CD players and hundreds of CD's for the oncology unit and the day hospital at CHOP - for distribution to the kids in treatment - to make their DAY a little better. It's a start! Every day opportunities await us and we must decide whether to take the chance or play it safe. We should all be encouraged to take the risks, for nothing is gained without them. Life is a Journey and the Journey is the Reward! Peace, John, Steph & Max ……………………………………….. NOVEMBER 11, 2005 Dear Friends and Family, The first Wylie’s Day Foundation fundraiser, the Battle of the Bands was a huge success. Well above and beyond our expectations. We raised over $13,000, twice our goal, and lost track of attendance but believe we had over 500 kids and adults. The music was great and the kids had a really good time. Everyone is talking about the next one! The entire night I felt Wylie’s presence and knew it was the right thing for our party boy. Wylie did love parties you know! He would have been right up there on stage. In fact, one of the bands, Burning Ace, included two of his really good buddies. Wylie actually started playing with this band early in his battle. The first band, Lost Militia, starred Max on bass guitar and lead vocals. Three other high school bands rounded out the evening. The event never would have happened were it not for the support and kindness of local families and friends, many sponsors and the bands themselves. The whole event was digitally recorded by a professional videographer. If we can figure out how to do it we’ll post via streaming video to you. We have a few of the commemorative “Battle of the Bands” tees left in sizes Medium and Large only. They are black with silver printing. The front is pictured in the attachment. The back includes the bands and the sponsors. If you want one let us know we’ll mail it to you. Suggested donation for the tee is $ 15. A few photos from the event. Peace, Steph, John & Max CARPE DIEM ……………………………………………………………. OCTOBER 30, 2005 Dear Friends and Family: Hard for us to believe, but 6 months has passed since we lost our dear Wylie. The shock for most has passed and you go on with your daily lives. We continue to adjust to a life we never thought possible. As Max puts it, life without Wylie is harder now than it ever was. As the numbness fades, our new reality evolves - to where we are not yet certain. The reality that 300 children a year lose their lives, to various disease, just at Children's Hospital of Philadelphia is painful! I attended a memorial service yesterday for parents who had lost children this past year and that auditorium was packed. It was one of the saddest events I have ever been a part of. I did not want to with that group, but it was my group. Beautiful songs were sung including Eric Clapton’s “Tears of Heaven” and meaningful poems and short stories recited as the children’s names were read and their photo appeared on a large screen. Many babies-lots of babies-some only a few weeks young. It was as if they came into this world, took a look around and said, its just not my time now. Sad, but I have to say, it was the older kids, the ones who had time to hope and dream and plan. Kids like our Wylie, who lost their lives that really brought me to tears. That evening, Max and I spent some time with a family who had lost their daughter to PBT four years ago. We helped them to fill treat bags which they take to the oncology department every couple of months. We talked about doing the same in Wylie’s honor. We now prepare for our first Wylie’s Day fundraiser, the Battle of the Bands taking place November 7th. Our goal for the Battle of the Bands is to raise $ 10,000 for Pediatric brain Tumor research and bring some more awareness to our community. Max has formed a new band, Lost Militia who will perform along with four High School Bands. We are selling very cool t-shirts for $15 each - Black with silver printing to commemorate this event. The foundation logo is on the front and the band names and sponsors on the back. Let us know if you'd like one. Send $3 extra for shipping. Also, for sale, the CHOP 2006 Calendar. No artwork by our favorite artist this year, but all proceeds do benefit the Oncology department of Children's Hospital and it is a beautiful calendar. These are $13 which includes shipping. Two weeks ago, Jordon, a good friend of Wylies' and ours hosted his second annual basketball tournament ( for old guys ) which raised a lot of money for both Katrina victims and for the Wylie's Day Foundation. Both John and Max played along with many others on a beautiful sunny day. No one was hurt and fun was had by all. This weekend we noticed many of the Upper Dublin soccer teams wearing a patch on their jackets in honor of Wylie. Today Max's team, the U-13 travel team, surprised us with a presentation and a check for the foundation after their game. The compassion and humanity coming from our friends and neighbors day after day helps greatly in our journey through this grief. We wish you all peace and love today and everyday! John, Steph and Max Carpe Diem ……………………………………………………… SEPTEMBER 29, 2005 Dear Family & Friends: One year ago while Steph and Max ran the 5 K, Wylie and I walked the one mile to benefit CHOP at the Parkway Run / Walk. It was a beautiful early fall day. Wylie and I were slow on the course - oh so very slow and alone that day. At the back of the pack slowed by the impact of chemo round number four we plodded on watching most people coming back as we were still moving towards the museum. We talked little but enjoyed the fact that we were there, together for a good cause. Life was good. Yesterday Wylie arrived at the run /walk in strength. In great numbers and with speed, Wylie was carried through the course more noticable and more present than any child on this day. Wylie's life, his brightness, his wit and his smile were all there to help us pursue something good - to care for one another. We ran & walked for Wylie - but we walked more for the kids that need help now and in the future. We walked for ourselves too. There were over 200 of us yesterday wearing Wylie's name - quite humbling and such an honor for the Strotbeck family. In life and in death Wylie has been such an inspiration. None of us understand what lies behind the wall of death. We may believe in the spirit or we may believe in the constant nature of energy. In any case most all of us believe that a missed loved one lives on in our hearts. Wylie lives-strong in our hearts and he will forever reside within us. The support and caring shown by so many of you, our friends and family is by far the most potent cure for the pain of grieving we are going through. Thank you all ! By the way - our team raised over $ 5,000 for CHOP Pediatric oncology between entry fees and donations. The event raised over $400,000 - Good job team! Please forward this message to those friends who joined us but are not on the Wylie's Day e-mail list and check out the attached photos. A special thanks to Patrick Looby for capturing our spirit on pixels. Please see attached file. More photos may become available as Steph masters the fine art of compressing and zipping. Carpe Diem-Seize the Day Peace & Love, John, Steph & Max …………………………………………………………………… AUGUST 25, 2005 Dear Family & Friends: It's been difficult to write, to express, to contemplate. We're going through various stages of grief that I won't put to words herein but may some future day. There is much written on this grieving process, of which we read daily, and this helps. Bottom line is not much has changed, there are lots of questions that will never be answered... The Wylie's Day Foundation is complete. We received our IRS approval in July. Here's an update on what's happening. 0. Through you generosity and that of others we have raised about $50,000 to date. Steph and I are meeting with Neuro Oncologists, Researchers and others to determine exactly the best use of these funds now and in the future. Still focussing on new biologic agents and speeding up the pipeline. 0. There have been many (hundreds) of additional donations made in Wylie's name, directly to the Neuro oncology Research Fund at Children's Hospital of Philadelphia and some directly to St Jude's Hospital for Children and to the Children's Brain Tumor Foundation. This money is already at work - focussing on the Day when no child suffers from brain tumor or the treatments that follow. We cannot thank you all enough for your generosity and help. 0. We are planning our first fund raising event for the Fall of 2005, November, we'll keep you posted. It will be in the Upper Dublin area. Looks like it's going to be a "Battle of the Bands". A committee has been formed, the location and day are set. 0. Wylie's Day web site should be up in a few weeks. NOTE THIS DATE: September 25th, 2005 - The Parkway Run for Children's Cancer Event is a fundraiser for the Oncology Department at CHOP. It's a 5 K Run/Walk that we all participated in last year. Steph and Max ran, Wylie and I walked. I think Wylie and I were one of the last to finish as he was very tired and I was just coming off a torn Achilles. Their goal this year is to raise over $325,000 with this event and we want to help. We invite all of you to join us this year. We, the Strotbeck's, are sponsoring "Wylie's Day" Team and we'd like to honor Wylie with a good showing. <My goal is + 100 people> Each Wylie's Team runner or walker will receive a special "Wylie's Day" Team shirt. Our goal is to have one of the larger teams at the event. We will have a tent to meet before and after the run/walk. It's early Sunday the 25th. The Four Seasons is a co sponsor. They provide logistics and breakfast after the race-but don't expect white linens! Location is next to the Four Seasons on Benjamin Franklin Parkway and the run/walk is a USATF Grand Prix along West River Drive. The web site for the event is http://www.parkwayrun.com/. Anyone from out of town that wishes to join us please let us know. Our home is your home and there's plenty of room. We have provided your email to the event for easy registration to Wylie's Day Team. Also you can register directly but do not forget to click the Wylie's Day when you are prompted to select a team. This will help us manage the expected number of the team and team shirts. We look forward to seeing you at the Parkway Run. Four months have passed since Wylie left us. Months have passed since we last wrote to you. Each day, each moment passes us for now with heavy hearts and lack of purpose. This will change! In general I suppose we are doing OK - coping. Most importantly we are talking, seeing friends, you all, working this through. Recently we spent two weeks out west in Steamboat Springs and Sedona, AZ. 'Twas nice to get away, spent much time hiking in canyons and mountains, were able to see the beauty and majesty and the vastness of our Earth, had hoped for some enlightenment or something...but alas...in the end Wylie was not physically here. No doubt Wylie was with us in spirit - but that's not enough. With the end of summer drawing near we hope this message finds you enjoying life and pursuing your dreams. Carpe Diem-Seize the Day. Make some memories - tomorrow is not pomised Peace, John, Steph & Max ………………………………………………………………………… MAY 18, 2005 Dear Family & Friends: It's been difficult to sit down at the keyboard to write. What does one say? If you read the book, "Tuesdays with Morey" released about ten years ago, the story ends as Morey departs this world after a long life. Final, over! If you have not read it... you should. Wylie's story does not end now... not while we are still here. A month has passed and the grieving seems to have just begun. We know that the grieving process is long, learned from the too many parents in this PBT world, but that life will return to a new normal and everything will be beautiful again...someday. For now it's difficult to see the beauty in the blossoms or smell the sweet fragrance of the spring or find the joy in watching kids play baseball. But I expect that one day, suddenly and without warning we will find ourselves smiling, laughing even, as we remember Wylie and all he gave to us in life. When Wylie died I rationalized in my head that people do die every day. That about the same time we became aware of his relapse nearly 200,000 people were expired from a wave? That every day US soldiers and civilians, Iraqi civilians are dying in a senseless battle for what? - many children not much older than Wylie. Where is the fairness in all of this? I've learned from numerous friends the grief they spared our family from, the grief they currently endure, these past few months. Parents, siblings, good friends have moved on. Goodness knows there's enough grief to go around these days. But life is lived one human at a time and that's how we all manage. We will grieve for Wylie and we will honor Wylie. We will try to remember mostly the good visions, the smiles and memories that Wylie gave us and erase most of the details of the struggle that he endured. At least once per day I am overcome with pain that seems to collapse on me without much warning reminding me of life in the waves in the Atlantic. Out there alone on many a big day - suddenly being crushed by a wave that pushes the body down to the sea floor. As I struggle to push up to the surface I realize that the force of the wave, the currents are keeping my body down, unable to rise for air. After what seems forever as lungs begin to ache and you start to wonder if you will ever come up and survive, you relax and accept the pull of the sea. And just then you are released and the opportunity to rise to the surface and grab a new breath of life is yours. Then paddle back out into the beauty of the sea and try again. We will remain busy and purposeful. Max probably more than both of us. Max is finishing sixth grade with straight A's, his band had it first paid "gig" last weekend, he's the starting defenseman on the CCLC lacrosse team ( 5-1-2 record) and he's continues to lead our nightly 8:10 prayer for Wylie. He's growing into quite the little man. The WYLIE'S DAY FOUNDATION is mostly complete - all of the paperwork has been processed and we are waiting for final authorization from the IRS. (expected in 4-6 weeks) The Foundation has it's tax number, it's completely registered and the accounts are open. Our next steps are to set up the web site, (we own the URL WyliesDay.org), develop collateral, gather information from other local foundations regarding fund raising ideas and most importantly, meeting with the NeuroOncologists at CHOP and lab researchers we know at the drug companies to identify where funds can be best applied. We have already received many donations from many of you and we thank you for your kindness and generosity. The foundation is off to a good start. We will communicate with all contributors directly - though not here. If you do know of others we should communicate with please do not hesitate to forward the Wylie's Day Foundation information to them or their contact information to us. Some current activities in honor of Wylie include: UDJAA baseball, for whom Wylie played the last four years, is raising monies by distributing 45YGB wrist bands to all the players (about 600) on each team and wearing them throughout this season. Look for them - it's a laced baseball leather bracelet - can't miss it! This effort has already expanded out to the softball organization and into the middle schools and elementary schools. We are visiting Sandy Run Middle School, Wylie's & Max's school, tomorrow. SRMS has been incredibly supportive and helpful, Wylie's teachers, the administration, everyone has just done so much. Again we thank everyone out there for your thoughtfulness, your generosity and your support. We are still very overwhelmed by all the caring and the love that came from family, from friends and from the community. Not sure if this was mentioned in prior message but throughout Wylie's last weeks and on the day we planted the tree and released the doves here, when there were hundreds of Wylie's friends around us, a feeling of oneness, a wholeness, a true caring community, of being home was always present and is present today. From the tragedy of Wylie's passing has come a whole new positive perspective of the world around us that we will endeavor to expand upon. Please find a picture from the tree planting celebration attached. We'll also post more on http://www.wyliesday.blogspot.com/ later today. Carpe Diem - Seize the Day - everyday Peace, John & Steph …………………………………………………. APRIL 28, 2005 ? Dear Family & Friends: As we move towards our new "normal" life we are reminded how much inspiration and courage traveled both ways last year. Please read the attached obit for Wylie (cut and paste the address into your URL bar) or go to www.ROW2K.com April 28, 2005. http://row2k.com/features/features.cfm?action=read&ID=216 The Wylie's Day Foundation will should be complete by tomorrow. We will send a more detailed message and update this weekend. Peace, John & Steph & Max Carpe Diem - Seize the Day ……………………………………………………….. APRIL 21, 2005 Our Dear Wylie: The memorial ceremony we had for you at our home, Tuesday night, was awe inspiring. I know you ordered the sunny weather and the perfect sunset for us all. As promised we planted a tree in your honor in the back yard. It's a weeping cherry and will grow to the height of the house and will flower every year, forever at this time of year. We dedicated this tree in your honor, in front of your so many friends, classmates, teachers and families from here and afar, from now and from our past. Your tree signifies life - your life - all our lives. The roots signify our beginnings, our birth, our formation as people. The trunk is our foundation (like family) - what we've learned - whom we've touched - all we know and who we are today. The branches are our future - as we reach for the sky - continuing to grow. The release of the doves, symbolizing your freedom, was preceded with the following poem by Rebecca Spurling titled "Dawn". Dad read the poem in front of your friends and family as Mom set the doves free. The dark of the night is over Once again the sun has risen We live another day And another chance is given By those who live above the clouds To live, to learn, to love We are given freedom to fly like the doves To chose our path, to make our way To choose with whom we spend each day To give our hearts to those who keep them And cherish each moment we are with them This we are given, but we chose our path To follow the light or crawl in the dark Wylie - we all prayed for your peace and safety Monday and Tuesday night in the back yard. We will continue to do so at 8:10 every night. We read passages, about you, written by your friends and your teachers. Songs written for you were sung and enjoyed. The outpouring of hope and support from everyone is a testament to what a good boy you are. You are an inspiation to all of us. We love you very, very much! Mom and Dad www.wyliesday.blogspot.com ……………………………………………….. APRIL 16, 2005 Dear Family & Friends: Wylie made the decision to leave us today. At 4:45 PM Wylie became an angel. Steph and I had the privilege to hold him close with our hands over his heart as it slowed and eventually ceased. He went in a peaceful and dignified manner, at home, surrounded by family. Throughout this journey Wylie showed amazing strength and grace but more than anything a positive attitude and life. He remains a bright star amongst mortals. This was certainly not an easy journey and his road was full of obstacles - but throughout the last sixteen months Wylie remained happy and focused on life and the good things that come with it. He was active in sports playing on baseball team last spring and soccer this fall He stayed in school getting A's in the fall learning till the end. He remained connected to friends and played games until he could no longer. He was living life to his fullest! He is an inspiration to us all. We will notify you of arrangements to follow - tomorrow. In lieu of flowers or cards, a donation to one of the Pediatric Brain Tumor research or support groups, in Wylie's name would be a blessing. We will provide these contacts to you also tomorrow. Peace, John & Steph …………………………………………………….. APRIL 12, 2006 Dear Family & Friends: It's taken too long to write this since there's so much that needs to be written but so little can be said. Wylie has, for the past week, been "stable" per Doc Phillips. He remains in bed generally sleeping but waking from time to time to eat something cold and wet. Words are few from his mouth though his eyes speak volumes. Wylie is not giving up and he clearly does not want to leave us. Who would - it's human nature to survive - isn't it? Wylie's breathing is becoming weaker and sporadic and he's taking in less orally which may be signaling the final stage - we're not sure. Yesterday morning while lying in bed next to Wylie I watch his lips and tongue moving ever so slightly trying to make a sound which would not come. Finally one word makes it out and it's haunting me now and will forever..."Why?" ... is all he could ask of me and I could not answer. This is unbelievably painful and unfair yet there does exist within some beauty and peacefulness. Each day Wylie is with us is now a miracle! Wylie is surrounded by much love and family and friends. He is aware of all of what's going on around him he just cannot respond. We moved Wylie outside into the magnificent spring day on Thursday and Sunday. We surrounded him as the breeze blew across his face and brought a smile to his soul. As we gather around him joining hands at 8:10, the focus of the energy has changed from the energy to heal to the energy to complete his journey. We ask that your energy be focused this way as well. Baseball season has started and our sons glove and bat remain in the closet - maybe forever. The days are long..the nights are longer. I created a web site for Wylie's Day which includes some photos and all of these messages though not all are in yet. Go to www.WyliesDay.blogspot.com Carpe Diem - Seize the day Make a memory - tomorrow is not guaranteed Peace, John & Steph Jan 10, 2006 Seize The Day "Tis only in their dreams that men will truly be free, Twas always thus and always thus will be" - Keating Dear Family & Friends, That's Mr. Keating by the way, the main character from "Dead Poets Society" a movie starring Robin Williams, released probably a decade ago, that we happened to come across over the holidays. A great movie if you've never seen it. Though we always knew Seize the Day was a statement in the flick I was surprised that it was the thread so deeply woven into the theme. We want to wish everyone a belated Holiday greetings and a Happy New Year. The New Year came upon us and there was nothing we could do to stop it! The year gone by was difficult but we want all of you to know that we are thankful for the friendship, the love and the support that has enabled us all to face each new day. Our lives will never be the same - but then whose life is...?. Every day something happens to each of us that alters our direction, our perception, our spirit if only a little bit. We experience wins, we experience losses, we make choices. Hopefully the choices we make are positive. Life on this earth is certainly short. Regardless of what your beliefs are about life...and I contemplate this daily... do we move on to some other level or is this carbon matter container the full extent of our existence? Who knows, who cares - the mission is the same - make the best of today. We miss our son Wylie ooohhh soooo much! Our grief takes on different form as the weeks pass by. I suppose currently it's it mostly sadness - sadness that we cannot share in the beauty of our lives now! But Wylie lives on in our hearts and the hearts of all of you too. And we will continue to build the memory of Wylie through good deeds and helping others. I have no doubt that Wylie's name, his inspiration, his strength and courage will be remembered long after I've been put to pasture. The Wylie's Day Foundation is off to a great beginning. We've raised just over $ 100,000 through 2005, double our expectations. Again we thank all of you that have helped achieve this milestone. These funds were raised through direct donations and the efforts of many who care. A basketball tournament was held in Wylie's honor that raised funds. Young cousins sold cider and lemonade on the corner in the fall and raised over one thousands dollars. The Battle of the Bands raised twice as much as expected. We have distributed about half of the funds so far primarily to CHOP for neuro-oncology research targeted at medulloblastoma and to the PBTC (Pediatric Brain Tumor Consortium) which is a centralized research group working with the top ten PBT hospitals nationwide. These funds too were designated for medullo research looking for the DAY there is a cure. Much of the research currently is pointing at genetic markers and cell communication or I should say miscommunication. There is evidence that communicators in tumor cells can turned off - thereby forgetting to replicate and hence they will die. It is critical to get funding for PBT research because the funding does not come from the drug companies or the Feds. Why you may ask? Simple - there just are not enough kids suffering with brain tumors to warrant the allocation of resources. Yea OK - walk in my shoes!!! And lastly we purchased dozens of CD players and hundreds of CD's for the oncology unit and the day hospital at CHOP - for distribution to the kids in treatment - to make their DAY a little better. It's a start! Every day opportunities await us and we must decide whether to take the chance or play it safe. We should all be encouraged to take the risks, for nothing is gained without them. Life is a Journey and the Journey is the Reward! Peace, John, Steph & Max ……………………………………….. NOVEMBER 11, 2005 Dear Friends and Family, The first Wylie’s Day Foundation fundraiser, the Battle of the Bands was a huge success. Well above and beyond our expectations. We raised over $13,000, twice our goal, and lost track of attendance but believe we had over 500 kids and adults. The music was great and the kids had a really good time. Everyone is talking about the next one! The entire night I felt Wylie’s presence and knew it was the right thing for our party boy. Wylie did love parties you know! He would have been right up there on stage. In fact, one of the bands, Burning Ace, included two of his really good buddies. Wylie actually started playing with this band early in his battle. The first band, Lost Militia, starred Max on bass guitar and lead vocals. Three other high school bands rounded out the evening. The event never would have happened were it not for the support and kindness of local families and friends, many sponsors and the bands themselves. The whole event was digitally recorded by a professional videographer. If we can figure out how to do it we’ll post via streaming video to you. We have a few of the commemorative “Battle of the Bands” tees left in sizes Medium and Large only. They are black with silver printing. The front is pictured in the attachment. The back includes the bands and the sponsors. If you want one let us know we’ll mail it to you. Suggested donation for the tee is $ 15. A few photos from the event. Peace, Steph, John & Max CARPE DIEM ……………………………………………………………. OCTOBER 30, 2005 Dear Friends and Family: Hard for us to believe, but 6 months has passed since we lost our dear Wylie. The shock for most has passed and you go on with your daily lives. We continue to adjust to a life we never thought possible. As Max puts it, life without Wylie is harder now than it ever was. As the numbness fades, our new reality evolves - to where we are not yet certain. The reality that 300 children a year lose their lives, to various disease, just at Children's Hospital of Philadelphia is painful! I attended a memorial service yesterday for parents who had lost children this past year and that auditorium was packed. It was one of the saddest events I have ever been a part of. I did not want to with that group, but it was my group. Beautiful songs were sung including Eric Clapton’s “Tears of Heaven” and meaningful poems and short stories recited as the children’s names were read and their photo appeared on a large screen. Many babies-lots of babies-some only a few weeks young. It was as if they came into this world, took a look around and said, its just not my time now. Sad, but I have to say, it was the older kids, the ones who had time to hope and dream and plan. Kids like our Wylie, who lost their lives that really brought me to tears. That evening, Max and I spent some time with a family who had lost their daughter to PBT four years ago. We helped them to fill treat bags which they take to the oncology department every couple of months. We talked about doing the same in Wylie’s honor. We now prepare for our first Wylie’s Day fundraiser, the Battle of the Bands taking place November 7th. Our goal for the Battle of the Bands is to raise $ 10,000 for Pediatric brain Tumor research and bring some more awareness to our community. Max has formed a new band, Lost Militia who will perform along with four High School Bands. We are selling very cool t-shirts for $15 each - Black with silver printing to commemorate this event. The foundation logo is on the front and the band names and sponsors on the back. Let us know if you'd like one. Send $3 extra for shipping. Also, for sale, the CHOP 2006 Calendar. No artwork by our favorite artist this year, but all proceeds do benefit the Oncology department of Children's Hospital and it is a beautiful calendar. These are $13 which includes shipping. Two weeks ago, Jordon, a good friend of Wylies' and ours hosted his second annual basketball tournament ( for old guys ) which raised a lot of money for both Katrina victims and for the Wylie's Day Foundation. Both John and Max played along with many others on a beautiful sunny day. No one was hurt and fun was had by all. This weekend we noticed many of the Upper Dublin soccer teams wearing a patch on their jackets in honor of Wylie. Today Max's team, the U-13 travel team, surprised us with a presentation and a check for the foundation after their game. The compassion and humanity coming from our friends and neighbors day after day helps greatly in our journey through this grief. We wish you all peace and love today and everyday! John, Steph and Max Carpe Diem ……………………………………………………… SEPTEMBER 29, 2005 Dear Family & Friends: One year ago while Steph and Max ran the 5 K, Wylie and I walked the one mile to benefit CHOP at the Parkway Run / Walk. It was a beautiful early fall day. Wylie and I were slow on the course - oh so very slow and alone that day. At the back of the pack slowed by the impact of chemo round number four we plodded on watching most people coming back as we were still moving towards the museum. We talked little but enjoyed the fact that we were there, together for a good cause. Life was good. Yesterday Wylie arrived at the run /walk in strength. In great numbers and with speed, Wylie was carried through the course more noticable and more present than any child on this day. Wylie's life, his brightness, his wit and his smile were all there to help us pursue something good - to care for one another. We ran & walked for Wylie - but we walked more for the kids that need help now and in the future. We walked for ourselves too. There were over 200 of us yesterday wearing Wylie's name - quite humbling and such an honor for the Strotbeck family. In life and in death Wylie has been such an inspiration. None of us understand what lies behind the wall of death. We may believe in the spirit or we may believe in the constant nature of energy. In any case most all of us believe that a missed loved one lives on in our hearts. Wylie lives-strong in our hearts and he will forever reside within us. The support and caring shown by so many of you, our friends and family is by far the most potent cure for the pain of grieving we are going through. Thank you all ! By the way - our team raised over $ 5,000 for CHOP Pediatric oncology between entry fees and donations. The event raised over $400,000 - Good job team! Please forward this message to those friends who joined us but are not on the Wylie's Day e-mail list and check out the attached photos. A special thanks to Patrick Looby for capturing our spirit on pixels. Please see attached file. More photos may become available as Steph masters the fine art of compressing and zipping. Carpe Diem-Seize the Day Peace & Love, John, Steph & Max …………………………………………………………………… AUGUST 25, 2005 Dear Family & Friends: It's been difficult to write, to express, to contemplate. We're going through various stages of grief that I won't put to words herein but may some future day. There is much written on this grieving process, of which we read daily, and this helps. Bottom line is not much has changed, there are lots of questions that will never be answered... The Wylie's Day Foundation is complete. We received our IRS approval in July. Here's an update on what's happening. 0. Through you generosity and that of others we have raised about $50,000 to date. Steph and I are meeting with Neuro Oncologists, Researchers and others to determine exactly the best use of these funds now and in the future. Still focussing on new biologic agents and speeding up the pipeline. 0. There have been many (hundreds) of additional donations made in Wylie's name, directly to the Neuro oncology Research Fund at Children's Hospital of Philadelphia and some directly to St Jude's Hospital for Children and to the Children's Brain Tumor Foundation. This money is already at work - focussing on the Day when no child suffers from brain tumor or the treatments that follow. We cannot thank you all enough for your generosity and help. 0. We are planning our first fund raising event for the Fall of 2005, November, we'll keep you posted. It will be in the Upper Dublin area. Looks like it's going to be a "Battle of the Bands". A committee has been formed, the location and day are set. 0. Wylie's Day web site should be up in a few weeks. NOTE THIS DATE: September 25th, 2005 - The Parkway Run for Children's Cancer Event is a fundraiser for the Oncology Department at CHOP. It's a 5 K Run/Walk that we all participated in last year. Steph and Max ran, Wylie and I walked. I think Wylie and I were one of the last to finish as he was very tired and I was just coming off a torn Achilles. Their goal this year is to raise over $325,000 with this event and we want to help. We invite all of you to join us this year. We, the Strotbeck's, are sponsoring "Wylie's Day" Team and we'd like to honor Wylie with a good showing. <My goal is + 100 people> Each Wylie's Team runner or walker will receive a special "Wylie's Day" Team shirt. Our goal is to have one of the larger teams at the event. We will have a tent to meet before and after the run/walk. It's early Sunday the 25th. The Four Seasons is a co sponsor. They provide logistics and breakfast after the race-but don't expect white linens! Location is next to the Four Seasons on Benjamin Franklin Parkway and the run/walk is a USATF Grand Prix along West River Drive. The web site for the event is http://www.parkwayrun.com/. Anyone from out of town that wishes to join us please let us know. Our home is your home and there's plenty of room. We have provided your email to the event for easy registration to Wylie's Day Team. Also you can register directly but do not forget to click the Wylie's Day when you are prompted to select a team. This will help us manage the expected number of the team and team shirts. We look forward to seeing you at the Parkway Run. Four months have passed since Wylie left us. Months have passed since we last wrote to you. Each day, each moment passes us for now with heavy hearts and lack of purpose. This will change! In general I suppose we are doing OK - coping. Most importantly we are talking, seeing friends, you all, working this through. Recently we spent two weeks out west in Steamboat Springs and Sedona, AZ. 'Twas nice to get away, spent much time hiking in canyons and mountains, were able to see the beauty and majesty and the vastness of our Earth, had hoped for some enlightenment or something...but alas...in the end Wylie was not physically here. No doubt Wylie was with us in spirit - but that's not enough. With the end of summer drawing near we hope this message finds you enjoying life and pursuing your dreams. Carpe Diem-Seize the Day. Make some memories - tomorrow is not pomised Peace, John, Steph & Max ………………………………………………………………………… MAY 18, 2005 Dear Family & Friends: It's been difficult to sit down at the keyboard to write. What does one say? If you read the book, "Tuesdays with Morey" released about ten years ago, the story ends as Morey departs this world after a long life. Final, over! If you have not read it... you should. Wylie's story does not end now... not while we are still here. A month has passed and the grieving seems to have just begun. We know that the grieving process is long, learned from the too many parents in this PBT world, but that life will return to a new normal and everything will be beautiful again...someday. For now it's difficult to see the beauty in the blossoms or smell the sweet fragrance of the spring or find the joy in watching kids play baseball. But I expect that one day, suddenly and without warning we will find ourselves smiling, laughing even, as we remember Wylie and all he gave to us in life. When Wylie died I rationalized in my head that people do die every day. That about the same time we became aware of his relapse nearly 200,000 people were expired from a wave? That every day US soldiers and civilians, Iraqi civilians are dying in a senseless battle for what? - many children not much older than Wylie. Where is the fairness in all of this? I've learned from numerous friends the grief they spared our family from, the grief they currently endure, these past few months. Parents, siblings, good friends have moved on. Goodness knows there's enough grief to go around these days. But life is lived one human at a time and that's how we all manage. We will grieve for Wylie and we will honor Wylie. We will try to remember mostly the good visions, the smiles and memories that Wylie gave us and erase most of the details of the struggle that he endured. At least once per day I am overcome with pain that seems to collapse on me without much warning reminding me of life in the waves in the Atlantic. Out there alone on many a big day - suddenly being crushed by a wave that pushes the body down to the sea floor. As I struggle to push up to the surface I realize that the force of the wave, the currents are keeping my body down, unable to rise for air. After what seems forever as lungs begin to ache and you start to wonder if you will ever come up and survive, you relax and accept the pull of the sea. And just then you are released and the opportunity to rise to the surface and grab a new breath of life is yours. Then paddle back out into the beauty of the sea and try again. We will remain busy and purposeful. Max probably more than both of us. Max is finishing sixth grade with straight A's, his band had it first paid "gig" last weekend, he's the starting defenseman on the CCLC lacrosse team ( 5-1-2 record) and he's continues to lead our nightly 8:10 prayer for Wylie. He's growing into quite the little man. The WYLIE'S DAY FOUNDATION is mostly complete - all of the paperwork has been processed and we are waiting for final authorization from the IRS. (expected in 4-6 weeks) The Foundation has it's tax number, it's completely registered and the accounts are open. Our next steps are to set up the web site, (we own the URL WyliesDay.org), develop collateral, gather information from other local foundations regarding fund raising ideas and most importantly, meeting with the NeuroOncologists at CHOP and lab researchers we know at the drug companies to identify where funds can be best applied. We have already received many donations from many of you and we thank you for your kindness and generosity. The foundation is off to a good start. We will communicate with all contributors directly - though not here. If you do know of others we should communicate with please do not hesitate to forward the Wylie's Day Foundation information to them or their contact information to us. Some current activities in honor of Wylie include: UDJAA baseball, for whom Wylie played the last four years, is raising monies by distributing 45YGB wrist bands to all the players (about 600) on each team and wearing them throughout this season. Look for them - it's a laced baseball leather bracelet - can't miss it! This effort has already expanded out to the softball organization and into the middle schools and elementary schools. We are visiting Sandy Run Middle School, Wylie's & Max's school, tomorrow. SRMS has been incredibly supportive and helpful, Wylie's teachers, the administration, everyone has just done so much. Again we thank everyone out there for your thoughtfulness, your generosity and your support. We are still very overwhelmed by all the caring and the love that came from family, from friends and from the community. Not sure if this was mentioned in prior message but throughout Wylie's last weeks and on the day we planted the tree and released the doves here, when there were hundreds of Wylie's friends around us, a feeling of oneness, a wholeness, a true caring community, of being home was always present and is present today. From the tragedy of Wylie's passing has come a whole new positive perspective of the world around us that we will endeavor to expand upon. Please find a picture from the tree planting celebration attached. We'll also post more on http://www.wyliesday.blogspot.com/ later today. Carpe Diem - Seize the Day - everyday Peace, John & Steph …………………………………………………. APRIL 28, 2005 ? Dear Family & Friends: As we move towards our new "normal" life we are reminded how much inspiration and courage traveled both ways last year. Please read the attached obit for Wylie (cut and paste the address into your URL bar) or go to www.ROW2K.com April 28, 2005. http://row2k.com/features/features.cfm?action=read&ID=216 The Wylie's Day Foundation will should be complete by tomorrow. We will send a more detailed message and update this weekend. Peace, John & Steph & Max Carpe Diem - Seize the Day ……………………………………………………….. APRIL 21, 2005 Our Dear Wylie: The memorial ceremony we had for you at our home, Tuesday night, was awe inspiring. I know you ordered the sunny weather and the perfect sunset for us all. As promised we planted a tree in your honor in the back yard. It's a weeping cherry and will grow to the height of the house and will flower every year, forever at this time of year. We dedicated this tree in your honor, in front of your so many friends, classmates, teachers and families from here and afar, from now and from our past. Your tree signifies life - your life - all our lives. The roots signify our beginnings, our birth, our formation as people. The trunk is our foundation (like family) - what we've learned - whom we've touched - all we know and who we are today. The branches are our future - as we reach for the sky - continuing to grow. The release of the doves, symbolizing your freedom, was preceded with the following poem by Rebecca Spurling titled "Dawn". Dad read the poem in front of your friends and family as Mom set the doves free. The dark of the night is over Once again the sun has risen We live another day And another chance is given By those who live above the clouds To live, to learn, to love We are given freedom to fly like the doves To chose our path, to make our way To choose with whom we spend each day To give our hearts to those who keep them And cherish each moment we are with them This we are given, but we chose our path To follow the light or crawl in the dark Wylie - we all prayed for your peace and safety Monday and Tuesday night in the back yard. We will continue to do so at 8:10 every night. We read passages, about you, written by your friends and your teachers. Songs written for you were sung and enjoyed. The outpouring of hope and support from everyone is a testament to what a good boy you are. You are an inspiation to all of us. We love you very, very much! Mom and Dad www.wyliesday.blogspot.com ……………………………………………….. APRIL 16, 2005 Dear Family & Friends: Wylie made the decision to leave us today. At 4:45 PM Wylie became an angel. Steph and I had the privilege to hold him close with our hands over his heart as it slowed and eventually ceased. He went in a peaceful and dignified manner, at home, surrounded by family. Throughout this journey Wylie showed amazing strength and grace but more than anything a positive attitude and life. He remains a bright star amongst mortals. This was certainly not an easy journey and his road was full of obstacles - but throughout the last sixteen months Wylie remained happy and focused on life and the good things that come with it. He was active in sports playing on baseball team last spring and soccer this fall He stayed in school getting A's in the fall learning till the end. He remained connected to friends and played games until he could no longer. He was living life to his fullest! He is an inspiration to us all. We will notify you of arrangements to follow - tomorrow. In lieu of flowers or cards, a donation to one of the Pediatric Brain Tumor research or support groups, in Wylie's name would be a blessing. We will provide these contacts to you also tomorrow. Peace, John & Steph …………………………………………………….. APRIL 12, 2006 Dear Family & Friends: It's taken too long to write this since there's so much that needs to be written but so little can be said. Wylie has, for the past week, been "stable" per Doc Phillips. He remains in bed generally sleeping but waking from time to time to eat something cold and wet. Words are few from his mouth though his eyes speak volumes. Wylie is not giving up and he clearly does not want to leave us. Who would - it's human nature to survive - isn't it? Wylie's breathing is becoming weaker and sporadic and he's taking in less orally which may be signaling the final stage - we're not sure. Yesterday morning while lying in bed next to Wylie I watch his lips and tongue moving ever so slightly trying to make a sound which would not come. Finally one word makes it out and it's haunting me now and will forever..."Why?" ... is all he could ask of me and I could not answer. This is unbelievably painful and unfair yet there does exist within some beauty and peacefulness. Each day Wylie is with us is now a miracle! Wylie is surrounded by much love and family and friends. He is aware of all of what's going on around him he just cannot respond. We moved Wylie outside into the magnificent spring day on Thursday and Sunday. We surrounded him as the breeze blew across his face and brought a smile to his soul. As we gather around him joining hands at 8:10, the focus of the energy has changed from the energy to heal to the energy to complete his journey. We ask that your energy be focused this way as well. Baseball season has started and our sons glove and bat remain in the closet - maybe forever. The days are long..the nights are longer. I created a web site for Wylie's Day which includes some photos and all of these messages though not all are in yet. Go to www.WyliesDay.blogspot.com Carpe Diem - Seize the day Make a memory - tomorrow is not guaranteed Peace, John & Steph




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