Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery.
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Good Morning, Everyone! Well, here we are at the end of what has been a very busy month for National Childhood Cancer Awareness Month. For almost three years, you have been reading my BLOG Posts mentioning a 501(c)3 non-profit organization that is so helpful to parents, family members and loving friends who care deeply about someone in their life who is facing treatment for critical illness. That organization is CaringBridge. Here is how CaringBridge came into existence.
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In 1997, founder Sona Mehring’s close friend suffered a life-threatening pregnancy. To keep family and friends informed about the critical situation, Sona and friends created a website."It was one of the first blogs. ... It was one of the first social networks,"says Mehring.
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That website allowed family members to communicate information to a wide circle of people without disturbing the mother’s need for rest or placing additional demands on hospital staff. In a situation so similar to that of my best friend of 30 years, Baby Brighid was born almost three months premature weighing one pound. With her mother in critical condition, the one-pound preemie was quickly rushed to the Newborn Intensive Care Unit at Children’s Hospital in St. Paul, Minnesota.The family posted daily news about mom and Brighid on the website. An accompanying online Guestbook enabled visitors to send the family messages of love and encouragement.(This is the "Guestbook" I have passionately encouraged many of you to consider visiting with both Gunner Gillespie and Trevor Tredaway's CaringBridge sites for your comments).
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My best friend of 30 years faced this situation with the premature birth of his son at 6 months who also weighed one pound. Sadly, unlike my best friend's son, Brighid’s story does not have a happy ending. After a nine-day struggle against tremendous odds, she died in surgery. The website allowed the family to convey this saddest of news without the painful burden of several emotional phone calls. The parents also had a place to post a final message to honor Brighid and their supportive online community.
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Brighid’s passing prompted an outpouring of loving messages to the family. They immediately understood that other patients dealing with the birth of a premature baby, childhood cancer or other critical illness would benefit from the same web resources. So, a memorial fund, created in Brighid’s memory, enabled Children’s Hospital in St. Paul to dedicate a computer and Internet access for patients and families wishing to create their own online communities.
Here is what every free, personalized CaringBridge website includes:
Patient care journal to update family and friends
Guestbook for messages of love
Photo gallery
Free online support for using the service
"The jury is still out a little bit on whether social support helps you survive -- but it definitely helps you live better,"said Dr. Charles Raison, an Assistant Professor of Psychiatry and Behavioral Sciences at Emory University School of Medicine in Atlanta, Georgia, He is also CNNhealth.com's mental health expert. He noted that while some studies show a survival benefit and others don't, almost all show an improvement in quality of life.
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"When people provide each other with support and encouragement -- that can make the difference in a person's life between...surrendering to hopelessness and ...finding the gumption to keep going,"he said. Support networks can also be good for family members, who are at higher risk for depression during a crisis.
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"They help take the burden off the family," said Raison. "When you are deeply connected with a loved one who is going through something that is very difficult, it puts tremendous psychological stress on family members. So anything that helps a patient come to a more positive, hopeful place is almost certainly going to be good for the mental health of the family members that are also struggling with the illness.
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In the past 12 months alone, over 145,000 CaringBridge sites have been created, and in the last 12 months, over 30 million users and visitors have logged on. On a personal note, I was a Psychology major in college who went back and earned his degree in 1999. During the three years that I was busy going to night school after days spent at the office in broadcasting management, my Dad was coping with Parkinson's disease and I was one of his caregivers. I didn't know about CaringBridge back then, but knowing what I know today, I really and truly believe in CaringBridge because they are a means of achieving this process of positive healing.
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Currently, more than 30 million families depend on CaringBridge. As a 501(c)(3) charitable organization, they rely on generous people like you to ensure the service is available for families when they need it most. While funds are not provided directly to families, your gift helps those using the free service stay connected while they heal. If you feel moved to Honor or Memorialize anyone, here is their address:
CaringBridge Donation Processing Center P.O. Box 131447 Houston, Texas 77219-1447
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Your financial gift is tax–deductible to the full extent provided by law. Please consult your personal financial advisor regarding the deductability of your contribution. The CaringBridge Federal Tax Identification number is 42–1529394.
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Thank you for being so supportive to me during a challenging month. This one has come to a beautiful close for a very special reason: because it is for The Children. See you soon! Michael
TREVOR TREDAWAY AT THE BASEBALL PARK (UPDATED 10/3)!
Left to Right: Morgan, Melinda, Trevor and Todd Tredaway at Arlington Stadium. Wow! On Saturday, Melinda reports that their family received a surprise when President George W. Bush arranged for them to fly to Arlington, Texas to see the Rangers baseball team play! As you can see, Trevor was out on the field and meeting players. President Bush arranged for the tickets, Southwest Airlines flew the family, and Enterprise donated a car for their use. Other sponsors for the trip include Benbrook Homes, Basin Aviation, and Borets Weatherford. God Bless all of these people for recognizing Trevor.
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Message from Melinda:"Thank you all so much for your thoughts, prayers and encouraging messages while we were in Memphis. It hasn't gotten any easier, for sure. But, the messages do help get my mind in the right place, and it is a daily struggle to maintain positive".
Blessings...
Melinda
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The Photos below speak for themselves. I can think of no better BLOG for today than this one. To those of you who stop here and read about Trevor regularly, this is a wonderful way to "put a face with the name" of the little boy we all love and care about so much. This was definitely Trevor's Day! We look forward to Melinda catching us up on Trevor's Caringbridge site soon at www.caringbridge.org/visit/trevortredaway.In the meantime, scroll down!
A Motorcycle group heard about Trevor and showed up at the house with the local Police to give The Tredaway's a procession to the airport. Many of the bikers removed a pin from their vest and gave it to Trevor as a Honorary member of their group. Man, I love you guys and I'll have to meet you when we do our concert in Midland! My Deep Respect and Best Wishes to the local Police Department for showing Their Love and Concern. There's an old saying: "Our Cops are Tops" and that goes for the Midland Police!
Trevor and sister Morgan on a bike. Trevor offered the guys a swap: to sit on te tractor in his back yard. What a kiddo!
"I'd like you to meet my friend Angelo Evans. I first saw him on a street corner in New York City flirting with a beautiful woman twice his age. I had to tell his story". - Robert Duvall
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Admittedly, I "hit the ground running" with September as National Childhood Cancer Awareness Month. As I prepare to close out the month with two more entries, I hope that each of you can stop and quietly recall something pleasant or humorous from your own childhoods. Much of my own childhood was spent making people laugh, and I paid a price for that skill with being paddled in grade school and junior high--back when corporal punishment was still politically correct. Talking back, impersonating teachers and neighbors, making crank phone calls (in the days before "Caller ID"), ringing door bells and running away, throwing snowballs at passing cars in the Winter time from hidden locations. Basically pretty lame stuff compared with the news of today. But in 1983 Actor/Director Robert Duvall spotted Angelo Evans, an 8 year-old Gypsy boy on a street corner in New York City and decided to film a movie about him called "Angelo, My Love". It was a long movie. I sat through it and loved it through the eyes of a mischievous kid, I suppose. At first glance, this entire paragraph would feel inappropriate during a month that focuses on children coping with cancer. But to those who feel this way, I would add this note of caution: "Not so fast!" Every child I have encountered who has cancer also happens to retain a sense of humor. So, in that spirit: May you always be in touch with your "inner child", and may you always have a nice sense of humor available for someone going through a rough patch in their life who could use a healthy laugh for healing. That is the power of Friendship and Supportiveness. See you tomorrow! Michael
If you are just joining us, this video is a reference to my BLOG Post of Wednesday, September 23rd.
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This has been an amazing week with so many emotions to consider from the open hearts of my dear friends Brian and Janelle Jones. What they shared with all of us in "The Interview" was priceless in terms of really making us stop and quietly consider how much more positive an impact we can have in the world by simply treating each other better. Brian and Janelle have been a tremendous blessing in my life.
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My love of writing came in the 4th grade when I was Natalie Rose Jones' age. One of my brothers was drafted into the Vietnam War, and my family and I were going through Hell worrying about him and his safety on a daily basis. I was given a school assignment that wasn't so much a "Pop Quiz" as it was a "Pop Essay". We had 15 minutes to write about any subject in the world. Well, that wasn't too much of a stretch for me--my brother was in Vietnam and he was always on my mind! My essay that I wrote in class was titled "Hot Summer in Vietnam", and I received a Blue Ribbon for it (even if the ribbon was made out of paper mache--I was proud) and mailed a copy of my essay off to my brother n Vietnam. He actually received it and I have been writing ever since--plain and simple.
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I had an interesting thought yesterday afternoon. Natalie is only the second person I have ever written about in my adult life without having had the Honor of meeting her. The other person is a profile piece that will be appearing in a future issue of Airways magazine. But I am getting a little ahead of myself.
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As I was making coffee and breakfast at home yesterday, I remembered Brian and Janelle telling me about their encounter at the third (and last) B.B. King concert they attended with Natalie, and the significance of his hit single, "The Thrill is Gone". I debated with myself about whether or not I might be accentuating a feeling of sadness by posting this video performance. However, I decided that by going ahead and posting the video, it would be the exact opposite. I would be celebrating Natalie's memory and the friendship I have with her parents, Brian and Janelle! With this in mind, I can look at this video and imagine my three friends in the audience as B.B. King performed this song. So, after I thought about it more throughout Saturday afternoon, I concluded that this really was the best way to cap off the week with The Jones' as my Special Guests!
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There are 3 more days left to National Childhood Cancer Awareness Month. I promise you that I will make each day count to the best of my ability. Children with cancer deserve a fighting chance. They deserve a voice. I wish each of you a nice Sunday! Michael
DIPG: THE INTERVIEW PRESENTS BRIAN & NATALIE JONES (PART 4 OF 4).
Brian & Janelle Jones
Natalie Rose Jones -
Brian: Janelle and I went to a workshop two weeks after Natalie passed away. We had a funeral in Montana and a memorial service in Minneapolis. We went to church two weeks later and his topic was "Our Callings". We listened to his sermon and we thought it was really good and so we stayed for his workshop afterward and one of the things we did during Question and Answer time, we had tablets and pencils and one of the questions was 'What if you had 6 months to live? What would you do?' And man alive, you could hear the pencils on the paper! You could hear the scribble, scribble, scribble, and the pages turning. Erase and scribble, scribble, scribble and I'm sitting there and I'm not writing anything. And Janelle's sitting there next to me and she says' 'What did you write?' and I showed her and I said 'What did you write?' and she showed me nothing.
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Manning: Ha! Isn't that something!
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Brian: When you've lived what he said. When you've lived what his question was, there is no answer. And when you walk the life that is taught by religions to live your life in a God-Like manner like Him, is what all religions talk about...when you walk that, there is no nothing to say. When you are that close to the one you call Creator, you cannot write anything down. That's the life that we've lived since Natalie was diagnosed.
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Janelle:Well, you've heard that 'Living your life as a prayer'. We all profess to make that effort to live our life as a prayer. You know what? For that five-and-a-half months we lived that. We lived out life as a prayer. We'd get up in the morning and we'd pray and we'd pray before meals and to know you're in the presence of someone who may not be physically present with you the next day, so you take that very moment and have so much gratitude for that moment. No matter what it looks like.Because if we could take that and feel that in our bodies, we wouldn't hurt each other. We wouldn't treat each other badly. We did that for five-and-a-half-months.
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Manning: It would change the world, wouldn't it?
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Janelle: It would change the world.
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Brian: It changed our world forever, and the world of our children, and the world of our family. The people who came into that house. We had a room set up that used to be a TV Room, a dining room, it was a foyer. And people would come to that table and just pray. I mean they would just take off their shoes and sit there and pray. We had the upstairs living room, and I mean there wasn't a TV in there or anything and that became Natalie's' room. If she was in her chair that was fine, but at night, we'd bring up the mat and lay there on the floor, and Janelle and I would lay down on each side of her. She was never in a room by herself...ever!
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Manning:How loving!
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Brian: You know what? She never was to begin with. We would always read to her. So when she would go to bed, Mom and Dad would spend that 20 or 30 minutes of special time. There was no go into the room and shut the door and go to sleep. This is the way it was.
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Manning: Totally transparent and real.
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Brian: Today we can go to the grocery store and we see kids...they don't even look anything like Natalie. We see the beauty of this child who is alive. And then we see sad things in the store too. Sometimes we'd like to take that parent aside and say, 'You know what? No.You don't realize how lucky you are'. And I do think we have a message and a story to tell.
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Janelle: That attitude of alertness in A-A about having an attitude of gratitude. I never really saw her a victim. This was a process she went through. And I still get angry. I get angry at the suffering sometimes. But I'm also amazed at her ability to go through what she did with the grace that she did.
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Brian: Oh, yeah. I mean. Looking back on her schedule. I mean, I had radiation before with my testicular cancer. I went through it, but not like that. I mean, I had that in a different region in my body. But I know the taste in my mouth, and I had some of the complications,I know. But not the way Natalie did. And all these kids die the same way. Their breathing and their heart rate get out of whack like they're running a race and their system just shuts down and they go to sleep. Some of them are more painful than others. We were blessed. She was blessed. Her doctors said, 'When we get sick, can we come over your house and have you guys take care of us?' And we said 'Sure'. And I really, truly believe that. They know the love that Natalie truly received. The sad part of it is, we talked with them that if another parent comes in and their child is diagnosed with this, you can call us and we'll call them, or talk with them and we'll introduce ourselves. And they thought: 'What a gift! What a gift!' And then it went from 'What a gift!' ...that was their heart opening up...and then society closed it back up and then they said, 'You know. Other parents aren't going to want to talk to parents that have lost a child'.
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Manning: Who decided that?
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Brian: Probably some statistician. They had their hearts wide-open because of the compassionand the love that we have. But then everything that we see, and our system callouses people, their emotions and everything. That, 'Okay I've got this great family that I can call...Brian and Janelle--Natalie's Mom and Dad and they can come down here and we would just have to say, 'Is there anything we can do to help?' Whether it's two weeks later and they take our card and just call us and say, 'Hey, you went through this'. It's just that parents don't want to talk to another parent who lost a child. This is a different group...250 children throughout the world and there is no research. We offered Natalie's' brain stem and it's just hit and miss. Sometimes there is and sometimes there's not. And everybody wants to raise money for research. No. Our doctors have already been told and people that we've worked with that 'No. We're not donating money to research. We're not doing fund raising for research. We will do fundraisers and we will do our work with our foundation for families, so the father doesn't have to go to work or the mother doesn't have to go to work, offer scholarships whether it's house payments or car payments or whatever because the truth is,' Yeah, we do know'. We do know from our experience that the life expectancy is this long. And I want that life expectancy with these parents and these parents to be without a little bit of stressed to be one-hundred-percent focused on this child. I mean, Make-A-Wish is great. They send you to wherever and they get the gifts and stuff. We want something different.
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Janelle: How about if we paid the electric bill for six months so their stress is alleviated?
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Brian: If that means going and talking to an employer and saying, 'Hey, John here. I know you know about his child and all being sick'. I mean I was blessed. I was given a lesson, because my company was an employee owned company and they just donated vacation time. So that from the time Natalie was diagnosed until after she died I never went back to work. I wasn't making the money I was making when I was working. But I knew that there would be a check there waiting every week. Then when that ran out, when their vacation time that they donated ran out, they did some other things so it was...
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Manning: ...How wonderful!
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Brian: ...Yes. And I mean, when they had a fundraiser, we would be there. They were very supportive. And it showed me because I've read on other blogs and other Caringbridgesites that there are families that aren't this way. That they've got to go back to work, they've got to work or they will lose their insurance. We would be willing to go talk with this employer. Because some thing's got to change and Natalie showed us this by giving and then by becoming a taker and we are family. Any family whose child is diagnosed withDIPG, we become bonded through the universe as a tight-knit family. And that's a fact. Just like when I came to Arizona and met the four children that I met, Gunner, Megan, Hailey and Caitlin...they all knew who I was. There was that connection. And the world would be a better place if we listened to our children because they have all the answers.
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Janelle: And to listen to our hearts.
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Brian: And listen to our hearts.
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Note from Michael Manning: This interview was planned well over one-year in advance. I cannot emphasize the tremendous amount of thought that The Jones' and I put into this visit. Their love for one another is strong and their message is one of Hope. There was a lot of deep Love and sharing here through both laughter and tears. I am exceedingly Grateful to Brian and Janelle for the Gift of their time with me. Through my BLOG feature, "The Interview," we are posted now on the worldwide web, and this visit of record is made available on the crawler so that parents of children with DIPG who are seeking more informationhave another means through which they can reach out for help as they begin "putting one foot in front of the other" to begin the difficult task of building a bridge from yesterday to the present.
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My heartfelt thanks also goes out to all of you who visited us along this 4-part interview during National Childhood Cancer Awareness Month! With Love, Michael
DIPG: THE INTERVIEW PRESENTS BRIAN & JANELLE JONES (PART 3)
Brian with daughter Natalie Rose Jones
Good Morning! How do I begin to say this? I'll just dive right in. We learn today so much more about Natalie Rose Jones and it is absolutely endearing and hopeful. I also asked a lot of Brian and Janelle. But they are brother and sister to me, and we have a trust in our friendship where I feel that I can do that, and do so with the utmost sensitivity and honor and respect. So, with this in mind, I asked The Jones' to reach out and speak directly to parents who have a newly diagnosed child with DIPG, to parents who have suffered the loss of their child to DIPG and to friends, caregivers and people in the community at large who may not know what to say. Brian was chuckling at how I would get around to transcribing this portion of our visit and joked as he pointed to my tape recorder, he said, 'That'll be your own insanity as you figure that one out!' Brian and Janelle have a beautiful sense of humor. But actually, It was a labor of love for me to transcribe this visit Brian resumes now with some reflections of Natalie Rose.
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Brian: When you get your school list of what you need for the start of the year, she would always want us to buy extra. This was after Kindergarten. And after Kindergarten, we'd always buy more pencils and more markers because she always knew there were kids that didn't have those things. There was always somebody in class. She paid attention to what was going on, and in her world around her. And that was her world! The world you live in, is the world we need to be concerned about. And if everybody did that, the world would be a better place to live in!
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Manning: I agree!
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Brian: And that was her motto: 'If we could all work together, the world would be a better place.' We were in Minnesota and it was on a grand scale. It went from extra pencils and glue to...Janelle and I whenever we'd go shopping we'd just throw in extra goodies. It was just given to the teachers. She came home from school. Fall had definitely hit Minnesota. They had a rule at the school that if you didn't have rubber boots, you didn't have gloves, you didn't have a stocking cap, you didn't have winter clothes you couldn't go outside. And they would go outside. Thy believed in getting fresh air. But a couple of Natalie's friends and a couple of people that she noticed couldn't go outside. So, she came home and she asked her Mom and me if we could go, and she was going to get an award for her spelling. And we'd always go to a movie if she didn't have to take a spelling test.
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Janelle: To do something special for her.
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Brian: She wanted to use that money to go buy clothes or something and take it to school for these kids. Janelle and I, with open hearts that we have, went to Target. They happened to have sales. And I mean, she kind of knew what size and what colors. So, we bought...it doesn't matter what we spent, but we bought boots and hats and gloves and we had two extra sets of snow pants that we had, and a jacket and Janelle took her to school that day and took them in. Natalie did not want those kids to know that it was her. She just wanted to take them into the teacher, give them to the teacher so the teacher could give them out at recess. That was all she wanted. She didn't want no anything. Janelle went in there and the teacher said 'Yeah, right. No. This class, this school gets to know about Natalie, and about her gift of Love and Sharing. And it isn't about putting her up on a pedestal, or look at what Natalie did or what Natalie's family did. But no. This was a gift from Natalie'. And it was okay. But she would always give. The new kid that moved into town, into school, Natalie was the girl who would go be friends with that person, at least on that first day or the second-day, making sure. You know. How to go through the Lunch Line...the whole thing. If somebody was picking on that child and they were crippled or had a speech impediment or something like that, Natalie would make it a point to go talk with that person and most likely, go up to that person making fun and say, 'You know, that isn't very nice'.
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Manning: Empathy!
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Brian: Empathy. She had a gift of laughter. And there's things that we've read since she passed in her journal. She knew. She knew this was her journey. She didn't know what it would look like. But you can't tell me. Janelle and I have a belief that we were extremely blessed to have been her parents.
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Manning: Sure.
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Janelle: She chose us.
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Brian: She chose us and we were very blessed. But that's who she was. She was a child that you couldn't give a run of the mill answer.
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Janelle: Because that was unacceptable. (laughter). She'd pout until you gave her an answer.
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Brian: Rosa Parks, Martin Luther King, The Kennedy's, you know. Why? She figured out just in the years going to school to History Class and things like that, 'Why do all these people that tried to change the world, why did they get killed? Why did that happen (the arrest) to Rosa Parks?' So, I explained that. And when Natalie wanted to go and sign those petitions, I think some of that came out of how Janelle and I raised her at home. Rosa Parks didn't get up that day and decide, 'I'm going to get in front of the bus that day and create this huge Civil Rights Movement.' She made the change. She did that. If she thought about everything that happened as we know it, she might not have done it!
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Janelle: After she was diagnosed (with DIPG) she and I went to the grocery store and she had gotten her leg brace and she said, 'Mom, I used to be a giver. I used to help the kids at school, or be the one that offered a the ones who needed it a little bit of extra help. Now I'm a taker. Now, I'm a taker' And oh! I had to think of something and it just came out, and I said 'You know what, Nat? Yeah, you were a taker. But think about how you felt when you gave, when you helped out others'. She said, 'Well, it made me feel very good'. I said, 'Well, you know what? You're still a giver because, think about the kids that can now help you and how they must feel when they help you'. We learned so much from each other that five-and-a-half months that she was ill. I wouldn't wish that on anybody. But I feel like there were some tremendous gifts within that five-and-half-months that were pretty amazing.
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Brian: We prayed every day for a healing in many different forms. And of course, when you're present with a sick child, so much healing took place in our family. Whether it was through kids, or Janelle's first husband Tracy Byrd or my first wife, Roxanne. And the amount of healing that was taking place in our lives, and I mean the different healing and relationships. When people ask us, 'Who was Natalie?', I mean we were blessed. We got to share her through her website and through things and when people ask us now that she's past, 'How do you guys do it? How do you live?' And it's principles Janelle and I live by.
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Manning: I constantly think about that with you!Constantly!!
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Brian: Well, I mean that's a whole other story.
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Janelle: There are days where we don't want to get out of bed. There are days where I see her picture on the wall or whatever, and burst into tears. But there are also days when I see something and laugh because like the feather story. Because she shows up in different ways now. We intellectualize everything so much. But when you heart's cracked wide open from this kind of experience, you're willing to think with your heart a lot of the time. And thinking with our heart is noticing others and noticing things like the feathers.
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Manning: You've had feathers show up at your doorstep.
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Brian:They've shown up on my leg.
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Manning: And I've had an opportunity here in Scottsdale at Camelot Therapeutic Horsemanship to experience that during a Drum Circle one night, where I had to pick a feather afterward. And the feather that I wound up picking for you all was said to have been a rare feather. But I was thinking of you all.
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Brian: Feathers became very important in this journey. Feathers started showing up. Janelle is a jogger...
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Janelle: I was out jogging even before Natalie was diagnosed, and I was out out jogging on West River Road near where we lived. I was doing my three to five mile run. Sometimes when I run, I pray or do a sort of meditation. And I stopped and was walking and happened to glance over the side of the sidewalk and there was feather laying there. I said "Oh my God, that looks like an Eagle feather'. And I was a little apprehensive about picking it up. And then I decided I was going to, and I picked it up and said 'Thank You' for the spirits that may have brought the Eagle itself. And was standing there looking at it and I took a few steps forward and I'm walking along and I picked up seen feathers in a row. It was really incredible and weird and exciting to find seven feathers like that.
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Manning: What time frame was this again? After she passed?
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Janelle: A couple of months before she was diagnosed.
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Brian: The Eagle feathers.
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Janelle: I took them home and I didn't know what to do with them. And I realize now that they were gifts for Natalie because two months later she was diagnosed with DIPG. We were sitting outside out back, Natalie's God-Mother and myself were sitting out back and we were talking about Natalie a few days after she was diagnosed and talking about radiation and what good that was going to do? And about nutrition and just a whole gamut of things. I was talking about, 'Well, I guess we'll just have to trust the process'. I happened to look down and Vicki said 'Look Janelle!' and there was this teeny tiny white feather sitting on my leg and we just laughed. Because we knew that the spirits were around us that the angels were around us and we were blessed and even in this turmoil that we were in we were blessed. From that time on, feathers have shown up at the most opportune times. Vicki is Natalie's God-Mother from Alaska. Vicki went home and she was talking to me on her cell phone and it went out. She called back and said,"I need to have this cell phone looked at because there is something wrong here'. She called me about a week later and said 'Janelle, you're not going to believe this. Guess what?' I said 'What?' She said, this guy took my phone in the back and he said 'Do you own birds or do you bird hunt?' And I said 'No, why?' He said, 'Well, the inside of the back of your phone was full of feathers and I had to clean it out and now it is functional again'. (laughter). So, we have apsychicfriend in Minnesota and we were talking about all of the things that were showing up. And she said, 'Well, Natalie was always an over-achiever'.
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Brian: Yeah, Katherine Hardwick in Minnesota is a channeler, and it was hard for her because Janelle knew her on a personal basis before Natalie was diagnosed and Janelle went out to a few things that Katherine would have and Katherine would always comfort Janelle. And then, the day that Natalie passed Katherine called Janelle on the phone and there was a big shift, a big shift coming and going to take place and 'How are you doing?' and all of this. And I really honored that. So, these were the people that were called into our life to answer the call, to pick up the phone. And then after Natalie passed, Katherine was also there to be with us and to comfort us and to offer us her support even down to, 'Well, yeah the pipes in your basement are going to leak; your house is sad too'. She channels a group once a month in Maple Grove called The Light Collective. This gal was talking about the pipes leaking in her house and the entities that she channeled told her that the people that were living in her house were sad. We realized.
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Brian: We had a leak that we were chasing around the house for months.
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Janelle: Then after we came here...
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Manning: ...To Arizona...
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Janelle: ...yeah, we sprung a leak in our apartment. And it shows up. However it gets to show up, it shows up and I'm really okay with that because we are grieving. We're still grieving and it's been 18 months. We're still devastated, we're still crushed. We get to put one foot in front of the other and we get to be open to whatever messages Natalie sends to that and we get to honor that. Because it was her time to move or go through the door to the other side. Obviously it wasn't our time. Some days it's hard. But we have to trust the process.
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Manning: I mentioned on my Blog that I had to spend some time with my Pastor in Lubbock, Texas as I was moving across the country because I had a tremendous amount of grieving and questions and confusion in that, 'Here I am alive and well and Sahara Aldridge has passed away. Why is it that she was taken and not me?' And you know, a lot of us felt this way! B.J. and I stayed up talking for five-and-a-half hours until 3 A.M. on just that subject, and we talked a lot about Sahara! It affected so many people besides me. I even had a reader comment on my Blog recently and they questioned--understandably-- how a child like Gunner Gillespie could go through so much suffering and endure so much and it's so difficult to understand. I struggled again with Gunner's passing! Everyone will have their own questions. But what can you say to a parent who is having such difficulty in dealing with a loss of a child from your experience? I don't want to put you on the spot.
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Brian: No. I think that's where we have the advantage over people that haven't lost a child is that we belong to that club of people who have lost a child. To lose child in the way that these child are going through with the brain tumor children, with the DIPG, there's a lot that is behind the scenes that unless you have walked it and lived it...you have no idea. And I don't mean that sarcastically or anything else. But there is no way that I can graphically explain everything and it's just easier to say there's no way you can understand. We have that connection with other parents. But our experience was different than say, Gunner's Momma and Dad, Janna and Gus. Every experience is different. Janelle and I were 50 when Natalie was diagnosed. So, we're older. Our children were older. There's lots of circumstances. The biggest advice that I would give another parent would be: Ackowledge it. Honor it. Accept it. Never forget, and to feel what you're feeling when you're feeling it. Don't say, 'Next month when things are better, I'll feel it'. Or 'My husband and I are going to go on vacation and that's when we're ging to be able to relax and let down'. No. Feel it when it's happening. And these little things that Janelle and I have been talking about like feathers or music, things like that...pay attention to. And the sooner the better. We watched John Edwards in Crossing Over--a national TV show where he channels people. He was talking to a family and that's what he said. He was talking in a back yard and he said usually people don't come through to him when he's doing a home visit. And this husband wouldn't leave him alone when he was there visiting his daughter and his wife. He pointed out some things so is mother would realize that he was there, and then, some things that only she would know, and some things afterward that happened. And she said 'Well, he's been here the whole time!' Another thing is to ask for help, because there's people that are willing to help, there are organizations that are willing to help. If you can talk to someone who has been there through this same experience to be that way. And another one that is tough, I don't know. Maybe people reading this might understand it. Don't have expectations about other people...how you think they should feel. because when you are dealing with a death of a child, people don't know what to say; people don't know how to feel; people don't know what to do.
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Manning: I see that on my Blog Page all the time. There may be 900 people on the counter (visitors) and I may have 4 comments. It's only been recently that I've accepted that this is not an indicator of interest or feeling or a lack thereof!
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Brian: They don't know what to say. We were over at my Dad's the other day, and Dad and Jewel. I was talking about medical stuff and as soon as there was a parallel in the conversation through either a reference that 'Yeah, we did this when Natalie was sick'. My Dad just totally shut down, looked straight ahead and then removed himself from the table and went into the living room...and of course the living room is where conversations ultimately end up. And it was just easier for him to do that than grieve the loss of a Granddaughter, and then of course on top of that, you've got history here he lost a son (Brian's brother) and the whole thing. Where Janelle and I had losses throughout our whole lives, but Natalie was our only baby together. But to be honest, there's nothing anybody could say to me that would make me feel different. The only thing is, 'Love Ya!' or 'Is there anything I can do'?. But to be the other person who says, 'I'm really sorry about Natalie dying.' I really don't know what to say back. 'Oh yeah, it really sucks'. Or 'Thank you. Thanks for your love and your concern'. But I mean there's that communication to where the power of nothing sometimes is great whether it just be: 'Thinking of you today', 'My thoughts and prayers'.
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Janelle: You know that entry I put on Caringbridge and your response back. It really isn't about saying anything. Remember the Caringbridge address where I wrote about 'I See You'? I think that's the most important thing by seeing them, not by looking away. Because we notice that anyway, we just don't talk about it. When a person turns away and says, 'Oh My God I can't..I hope they didn't see me looking at them'. Just acknowledge. To see in each others eyes.
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Manning: I don't remember what I wrote!
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Brian: You wrote a great response. And that's it. because Janelle and I will write something on the Blog and we'll get 1,000 or 1,500 hits and there will be 2 or 3 people that respond to it and that's okay.
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Manning: Yeah, that's okay. I just learned that this past week. That was something new that I learned in my life just this week.
- Please Join Us As We Wrap Up Our Visit Tomorrow!
DIPG: THE INTERVIEW PRESENTS BRIAN & JANELLE JONES (PART 2 OF 4)
Brian & Janelle with Natalie -
This is Part 2 of my 4-Part interview with my dear friends and special guests on "The Interview", Brian and Janelle Jones. Today, we will focus on exactly what DIPGis. It is crucially important that readers understand what makes this particular tumor so unique from others.But first, a word about how I first met Brian would be helpful.
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One weekend morning, Gus Gillespie invited me to their hotel suite. Gus told me the night before that there was a special guest at the hotel that he wanted me to meet for breakfast and he asked if I would stop by his suite so we could walk over and meet Brian Jones. At this point, the only thing I knew about Brian was that his career as a pitcher and outfielder in Major League Baseball had been cut short by a sports injury. That was about it. Janelle was not along with Brian on this particular trip. Natalie Rose Jones had died in February and this was barely 5 months later. So, I stopped by early in the morning to pick up Gus and to say 'Hello' to Janna, Gunner and Garlynn. Gus and I left almost immediately and walked across the hotel and resort pool area to the restaurant. I was introduced to Brian and we sat down over coffee. Gus and Brian caught up with one another and they spoke about the medical progress of other children in the Scottsdale area that they had met. I remained quiet for about 15 minutes to just listen and to try and get a sense of who Brian was and how he fit into the equation. Finally, I interrupted the two men and asked Brian politely if he wouldn't mind backing up a bit for me and reintroducing himself so that I could understand his visit. Brian was very gracious and explained that his 10 year-old daughter Natalie Rose had been diagnosed with the same tumor that Gunner was coping with, a DIPG. She lived only five-and-a-half months. I asked when she passed. He replied, "Almost five months ago, in February". I tried very hard to allow this information to soak in, and truthfully, I found it very difficult to speak. I can only imagine that Gus must have read my facial expression and he casually picked up the conversation with ease. Thank God! When Brian rose from the table to refill his coffee and go through the food line, Gus turned to me at the table and with genuine emotion he said, "Brian and his wife lost their daughter. Just 10 years-old. Can you believe this, Michael?" Well, the fact is I couldn't. This really floored me. Anyone who knows me, will tell you that I'm rarely at a loss for words in most any social situation. But as I look back on that morning, I so appreciate that Gus seemed to be the catalyst to get each of us talking and to keep us talking. I believe it was a day later that Brian asked me to stop by his suite. He wanted to know how I came to befriend The Gillespie's and this led to the story of my involvement with a small grass-roots project I had initiated back in Ohio that involved organizing a tour bus for people to attend Sahara Aldridge's fund raising concert in Missouri that rock legend Rick Springfield had organized and performed at back in December, 2006. Our 90-minute visit was very good for me to talk and get some things off my chest. It also gave me a good chance to learn about Brian and his wife Janelle. Little did I know that Brian would become a trusted friend and confidante who would help me through many late night phone calls from Scottsdale to Minneapolis. Because of Brian (and later Janelle after she relocated to Arizona) I was able to understand better what was happening with Gunner over the course of his treatment. Here was Brian answering cell phone calls from me at 1 A.M. back in Minnesota. My emotions were running high in those critical months and I am eternally grateful to Brian for stopping everything he was doing to take as much time to talk with me and lend his insight to into Gunner's medical and emotional situation from his own experience with Natalie. In my quiet time at home, I sometimes think back on those conversations and how much I grew from them. Brian was a grieving father, but he always made the time for me to call him day or night. We had many telephone conversations and to this day, I cherish those talks. As a result, I grew as a person, and I am certain that I was able to become a better friend to Gunner because of Brian's wise counsel. We pick up our visit now.
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Manning: One of my deepest regrets was never having the opportunity in this lifetime to meet your daughter, Natalie. I met you (Brian)...
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Brian: Right.
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Manning...when Gunner (Gillespie) was still here in Scottsdale receiving alternative medical treatment. That's when you and I first became friends. And at that point, I think, Natalie had passed away...
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Janelle: Yeah...
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Brian: She passed away in February and I was there in the very end of June or early part of July. And yeah, it seems like...but I mean, all children are talented and beautiful, and gifted and everything. But the research that Janelle and I have done withDIPGin going to these other children's websites and stuff...all of these children are really gifted.
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Manning: Yeah, and one of the points that I really wanted to get out on this worldwide website interview with the two of you is to spread the word about DIPG. Because the chances are very good that regular visitors to this Blogsite and others who Google "DIPG" from around the world really need to understand it. So, with that in mind, tell us. What is DIPG? It's a brain tumor.
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Janelle: Diffuse Intrinsic PontineGlioma which affects affects around 250 kids worldwide a year. And it's a devastating illness. There's nothing to describe it.
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Brian: No. The earlier...it seems that the younger children are diagnosed with it, is like if they've fallen or hit their head when they're real little. So, Mom and Dad takes them to the Pediatrician and they have to do a test. And the only way this is found is through an MRI. A CAT scan won't show it. A CAT scan can show some things, but an MRI is the only thing that proves it, and there is nothing they can do. They don't know where it comes from. And they don't really have any idea on a treatment plan. So, what they've been doing for 30-years is radiation, and a steroid, Decadron has been used and they have have other trials with some Chemo's, but there's nothing that works and life expectancy is five and a half months to eighteen months.
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Manning: And I want every reader to know this...the brain stem is in the middle of the brain...
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Brian: Right, It's like if you just follow your neck and you just go right up where the brain stem goes into the skull, it's right deep inside there. It's like a piece of conduit. It has everything that functions your whole body and all your motor skills, muscle skills...
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Janelle: Basics, basics...
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Brian: All your basics run through that piece of conduit. And it's in a place where they can't operate. They used to do biopsies to make sure it was cancerous. But they quit doing those because they all are, then they have to deal with the infection.
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Janelle: Well, they did damage.
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Manning: They did brain damage.
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Brian: They did damage, yeah. Basically, all these kids all look a lot. I mean, it's like Down Syndrome kids.
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Manning: Yeah, I'm aware of that.
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Brian: Okay. It's very similar with the DIPGchildren...not in the physical looks. But if you can look at the signs, there's one eye that will become cross-eyed and pulled real bad. Then the motor skills, you're looking at a child who's basically had a stroke. They'll lose...
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Janelle: ...They begin to lose basic function.
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Brian: It is basically like a stroke in that it begins to affect one side of the body more than the other and that's because of pressure in the brain stem. So, what they're using is Decadron which is a steroid to take that swelling away from the brain stem itself. And that's where the insanity of these drugs and of this disease that the parents will never be able to be the same.
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Manning: That is a terrible drug, from what I witnessed with Gunner. God Bless him.
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Brian: Well, yeah. And it's the same with all these kids. I mean, if there was a way you could put PMS, puberty, adolescence, drug withdrawal, drug addiction, it's horrible.
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Manning: The suffering...
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Brian: The insanity. For a little child who is sick, to be given this, and 20 minutes or a half hour after you have an incident, to have them apologize to a parent or family member for what happens...
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Janelle: Well, what happens is, their mood. They have great mood swings.
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Manning: Emotionally.
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Janelle: Yeah. And they get angry and frustrated and they don't know why. It's the drug and they have no control over it. And Natalie used to get real upset. It was a huge fit or anything. She would just spit or whatever and say whatever. And then a half an hour later, she'd apologize and say. "I'm sorry. It's the drug, isn't it?"
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Manning: She knew.
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Brian and Janelle: She knew, she knew.
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Janelle: Our hearts were being broken open during that time, because there wasn't anything we could do to alleviate it.
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Brian: Nothing, nothing!
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Janelle: Except to be there and hold her hand and be with her through those mid-streams of emotion.
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Brian: And the food swings, and I mean they're hungry and that's where I made the analogy that all these different things that people can associate with. If you can throw that into someone who is sick, and as a parent. I mean, we lived in a suburb of Minneapolis. And Natalie first had the radiation, and was on the Decadron, and when it was at the peak of this insanity and they want something, as a parent you want to get them something that might quench that thirst. And if you can't find that in Minneapolis, you're not going to find that. Minneapolis got awfully small, when you're in search of something. And that's the insanity of it. Ninety-nine percent of the time when I went up to the store five minutes away, that whole insanity where Natalie was in when I left was either calmed down or she'd apologize to Janelle. But to this drug. It's a double-edge sword. It saves their life. It prolongs their life. And it's also deteriorating their muscles...all in the same...and she gained...
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Janelle: We didn't weigh her, but she gained at least 30 pounds.
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Manning: My God, that's a lot for a child!
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Janelle: She weighed 85 or 90 pounds when she was diagnosed.
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Brian: First, she lost weight because she was sick. First, we noticed that the eye was turned in. So we went to the eye doctor.
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Janelle: She just needs glasses, and then she started to stumble a little bit and I was just so out of the loop. And I thought she just got clumsy. You know because of the pre-pubescence. I was a clumsy kid as a child so I just drew that assumption which was so totally off base. But it makes it sad. But I don't blame myself.
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Manning: No, of course not. You were trying to get a handle on what was happening.
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Brian: Yeah, so she got taller and skinnier with all of these changes. But this drug, your body just expands and you get the Moon-face.
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Janelle: Natalie's Oncologist said that she's going to get "the Buddha look". Well, you're not really consciously aware of what that means. And a month into it we started seeing changes. Her cheeks got puffy and her tunny started to get a little bigger. And looking at all of the different kids of the Caringbridge websites, as people have uploaded pictures of the kids as they were progressing, they all had the similar look and it's crushing.
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Manning: There is a steroid that you two and I have discussed earlier that is safer, easier?
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Janelle: There's nothing else available to alleviate the swelling.
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Manning: But what about the drug that you applied for under the clause of "Compassionate Use"?
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Brian: It's called Xerecept (pronounced as "Zera-cept").
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Janelle: We had done an investigation, up until 3 O'Clock in the morning looking online for something that make a difference in how Natalie was being treated, because the treatment for DIPG has not changed in 30 years.
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Manning: Nothing's changed.
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Brian: No. They tell you that except basically, there are clinical studies in Chicago for Chemo and for different things and the results are the same. Really, they are just prolonging, and the complications from some of the other kids that we've followed on this Merry-Go-Round of trial study and trial study and trial study, um...it's just hard to watch.
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Manning: This is terrible! What can be done?
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Brian: To get Xerecept. And we find out about this by doing research as all parents are doing and this was two years ago. The group that has just started on Yahoo Groups, it is the parents who are doing the alternative treatment research. Because when you are told that, I mean here it is 2009. Natalie was diagnosed in 2007--that there's nothing they can do, that there's clinical trials...
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Janelle:... that are available here and there. But you have to fit their criteria.
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Brian: And beyond that, not much you can do except provide comfort and send your child home.
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Manning: And Janelle made a great observation in explaining DIPG to me earlier this evening...it's like there is a one foot by one foot piece of grass and...
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Janelle: ...you take a handful of sand and you throw it into that area and that sand is the tumor. And that is the tumor. How do you remove that?
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Manning: That's what they mean by the word "Diffuse".
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Janelle: Right.
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Manning: That's why you can't operate on it, you can't do Chemo, you can't...
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Janelle: ...and in such a delicate area.
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Brian: You're right in the brain stem where your ability to breathe comes from there. Your basic functions comes from there. That's where all of your basic functions of the body comes right through that piece of conduit that's in our body. Xerecept has about 6 side affects. It was tried on adults. We found about it. We talked to our doctors at Children's Hospital and they did some research and we wrote a letter, and the guy we needed to contact was out of the country, and so it took a little while longer than it should have. Janelle wrote a "Compassionate Use" letter asking them for this drug for Natalie.
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Janelle: And freeing them from any liability, freeing the company from any liability.
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Manning: This is the drug company?
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Brian: Keltic Pharmaceutical. So, we were granted approval! Natalie's doctors were excited because, it;s hard for thenm too...the medical staff and the medical people to give the families this diagnosis. Because they know that as great as Science is, there's nothing to offer. We met with them a week before Natalie passed away, signed all the papers.
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Janelle: It was suppossed to be there the week that Natalie passed away. The day that Natalie passed, was the day they were deciding on the dosages and that kind of thing for her. The day she passed. So, you know, the irony of that.
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Manning: It's heartbreaking. I'm just so...I...
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Janelle: It is! It's devastating, because her quality of life had she been given it six weeks prior--because we had asked for it two months prior.
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Brian: What's really frustrating is that you're given a diagnosis and usually you're given it by Neurologists, Oncologists, experts! And they tell you that there is really nothing that can be done. They tell you about life expectancies and you realize how serious it is...
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Janelle: You hear 'Mayo Clinic'. The head of Neuro-Oncology there read Natalie's report and he told us individually, because it was just Janelle and I and Natalie at the hospital that night. They told Janelle first, because I stayed in the room with Natalie and then Janelle came back with great composure. And then it was my turn to walk down to the hallway and talk with the doctor. It was a whirlwind of events. It wasn't until a week before Janelle and I sat down and said, 'Okay. What was it the doctor really told you. This is what he told me'. I mean, we had an idea. But between doctor appointments and being fitted for a foot brace and a face shield for the radiation and to be put through everything this poor little girl was put through in a 48-hour period of time--not to mention having family flown in from Alaska, from all over.
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Manning: All over.
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Brian: For your world to change that drastically. She was diagnosed on the 25th of August, and I turned 50 on the first of September. And on that day, all of our kids were home. They planned a surprise birthday party for me. They got us out of the house for lunch to The Olive Garden. And so that was the first time we had been alone, the first time we had been out of Natalie's reach. But we also knew that Natalie was excited to be there. She loved parties. She loved to celebrate. She loved to make others have fun. And she was about Love, about Life about all of these things and I mean in abundant ways! I mean, if you had a little bit of glitter, she figured out how to disperse it and make it a lot of glitter. And it didn't matter if she was dancing with the Grandma at the party to the Kitty Cat. She was about Life and Giving. You asked me to say a little about Natalie. You're going to have fun typing this next!
DIPG: THE INTERVIEW PRESENTS: BRIAN & JANELLE JONES (PART 1 of 4)
Brian & Janelle Jones
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Good Morning, everyone. My Special Guests on this edition of "The Interview" are Brian and Janelle Jones. I first met Brian when the late Gunner Gillespie was living here in Scottsdale, Arizona last summer to receive alternative medical treatments for the same type of cancerous brain tumor that also claimed the life of Natalie Rose Jones, Brian and Janelle's daughter. At the time I met Brian, Gunner's parents Gus and Janna were domicile less than two miles up the boulevard from my residence. Gus and Janna are very dedicated high school teachers whose son received his diagnosis not long after we lost 13 year-old Sahara Aldridge in Cape Girardeau, Missouri. As I have mentioned in previous posts, it was Shannon and Amy Aldridge--Sahara's wonderful parents and my dear friends who first made me aware of Gunner in Benton, Kentucky after he received his diagnosis with DIPG. Janna was staying here with their daughter Garlynn, then-5 years-old and Gunner, who was then 7 years-old. They were here in Arizona to receive alternative medical treatment for Gunner after traditional medical treatments were limited. It was no coincidence that The Gillespie's and I would become close friends after I myself relocated to Scottsdale in early December, 2007. Like Sahara and Gunner, I answered a calling on my heart to befriend Trevor Tredaway, age 4, and his parents Todd and Melinda with their 2-year old daughter Morgan. As odd as it may sound, I wasn't fully conscious of this fact until I became friends with Brian and Janelle Jones who helped me understand much more about what I was experiencing with my outreach to Gunner. I am forever in their debt with Gratitude and Love.
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Natalie Rose Jones died only five months earlier when Brian arrived to Scottsdale to explore what he could do to assist a number of children who were here with DIPG and other brain cancers. His visit to the hotel resort where Gunner and his family were staying was to lend supportiveness through love, friendship and training both he and Janelle undertook with Acuscope and Myopulse therapy that helped improve the quality of Natalie's life following her diagnosis. Both Natalie and Gunner eventually died from DIPG, a cancerous brain tumor that is so rare, only approximately 250 children in the world develop it annually! Some 14 months ago, I decided in my own heart that I had to bring awareness to the name of this tumor and many of you will be reading about this today for the first time in your lives.
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The term: DIPG stands for "Diffuse Intrinsic PontineGlioma". In plain language this is a tumor of the brain stem. It is an insidious disease and it can tear families apart. In this four-part visit, you are going to meet a remarkable young couple who have given me so many gifts. Most recently, they gave me their gift of time to sit down with me on a warm, summer evening on Saturday, September 5, 2009 outside a cafe where we had just finished dinner in Tempe, Arizona.
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For far too long now, DIPGhas been a form of cancer nobody knew about. Others dislike even talking about it. It is, to be certain, a very hard topic. But I feel convinced that it must be discussed out in the open. That's where Brian and Janelle come in. Over these many months, I have sat and listened to their remarkable journey across a bridge--from the life they once had with their beautiful daughter--to the life they now live after her passing. While their hearts have been broken, The Jones' have embraced Natalie's life as a Blessing and a Gift for the 10 years she lived on this earth. For the Jones' (and for this author) life is about choices we make. We can choose to live our lives out of Fear, or we can make the deliberate decision to live it out of Love. Brian and Janelle have taught me--whether they realize it or not--that it is a choice to create relationships with those around us from the standpoint of Love and keeping an open heart. For Brian and Janelle, Natalie remains with them daily in their mind, heart and soul. And as you read their story---in their words---you will discover that they are committed to sharing what they have learned from their ongoing journey withDIPGwith other parents to lend them love and supportiveness at a time when this diagnosis often leaves them feeling isolated and desperate. This is gradually changing and Brian and Janelle are helping to lead this effort positively.
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This interview was one of the most intense emotional experiences I have had in over 15 years of interviewing actors, actresses and CEO's in offices and homes across the country. I found it more than ironic that Brian, Janelle and I met not in an impressive corporate office building, or a lavish home, but outside a casual restaurant after dinner. We met one day after what would have been Gunner Gillespie's 9th birthday and so this is a fitting interview, and one I feel Gunner himself would approve of! I am certainly aware that in this moment, parents of a child who have just received a DIPGdiagnosis will be using "Google" to learn about "DIPG". They will inevitably discover the visit you are about to read today over a total of 4 installments.
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The time has come to open up and begin a worldwide dialogue about children with cancer generally, and DIPG more specifically. Unlike other interviews, I had only about four of five questions for Brian and Janelle compared with the 15 or 20 I usually have as a magazine journalist on assignment conducting a business article interview. May this visit over the next 4 days touch your heart in a very positive way.
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Manning: Tell us about Natalie.
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Janelle: When Natalie passed we dressed her at the funeral home. Anyway, we went in and the funeral director came in wearing jeans and said 'I'll take you back and I want you to know that I leave the radio on in the back there for them'. You could feel his heart in that, in saying 'I don't want to leave it quiet back there for them'. He said you can change the station if you want to, or you can turn it off--however you're comfortable. So Vicki (Natalie's God Mother) and Brian and I walked back, and of course we were standing in front of Nat's body, getting all emotional and feeling sad and talking to her and starting to cry.
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Brian: At this time, they're doing the farm report (over the radio).
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Janelle: Yeah. So there was talk...
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Manning:...out of the radio.
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Janelle: It was like background noise as we're sitting there talking to Natalie and the first song that comes on was B.B. King, "The Thrill Is Gone". And the reason why that is significant is that we had taken Natalie to three B.B. King concerts by the time she passed, when she was ten. She had seen B.B. King in concert three times, and the last time we had taken her we were right down in front. He was sitting in his chair on stage and there was a guy who was handing out necklaces and guitar picks. B.B. King was pointing at Natalie, and the guy started to hand something to somebody else and B.B. King started shaking his head, and the guy in the audience finally pointed to Natalie and B.B. King nodded his head 'Yes'. He handed her the necklace and she was just thrilled about it. So, that song, "The Thrill Is Gone" had double meanings to us. To us, it felt like her gift she was showing us was that she was with us. She was our thrill! She was our thrill.
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Manning:This happens a lot, every time we talk. Music comes on and it's interesting.
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Brian: Just like today, sitting here and doing this (interview) and that song comes on (a Paul Simon Song) which is about a father and daughter.
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Manning: What song is that playing in the background?
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Brian:Father and Daughter. Yeah, I mean it happens all the time. It's getting in the car and Janelle and I will be leaving the apartment. A lot of times we don't talk to each other.
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Janelle: A song will come on the radio and we'll just look at each other and know that through that song, Natalie is speaking to us--whatever song that might be.
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Brian:It's just a reminder of being present. It isn't always about her or about her journey. It's about who we are. Music has been a big part of our life. We love to dance, we love to sing. Natalie would love to sing and dance. She was going to be a super-star. Natalie was hugely afraid of thunder and lightning. I mean, you live in the Mid-West. She didn't like the thunder and lightning. The last summer before she was diagnosed, and people say "Oh, the vacation of a lifetime", and that's what it truly ended up being. Natalie and I went out to Oregon and then we drove home and her and I just had a great time together. Then Natalie and Janelle went out to Montana. And in both, you deal with thunder and lightning. We went to celebrate her birthday and Dustin's birthday, my oldest son's birthday. The thunder and lightning was terrible. We were talking about her becoming a movie star and that someday she would have a limo and Mom and Dad could ride around with her because she was going to live with us until she was thirty. Of course by then, we would be 80 (laughter). So, she had it all figured out. In her mind she shifted from fear to ---and this was a week and a half before she was diagnosed---she no longer became afraid of lightning or thunder. That became the paparazzi taking pictures of her. And that's how she conquered the fear and in seeing the beauty. All little girls have fantasies and imaginary things. We drove through probably one of the worst lightning and thunder storms that I had been in. There's an alley between Hinckley, Minnesota and Minneapolis that really gets hit with thunder and lightning and rain. If I had known we were going to hit that, I would have never driven through it. It was ugly. But we had a blast. But like I said, this was a week or ten days before she was diagnosed.
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Manning: I only have a couple of questions. But tell us about Natalie. This is a worldwide blog and people need to know who she is.
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Brian: Natalie was born August 12, 1997 to parents who were old enough and probably should have known better. Janelle is a diabetic, and I am a testicular cancer survivor. Natalie was born about a week before I turned 40 years old. Janelle and I prayed for a balance in our lives because...
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Janelle: ...We were in the middle of starting a new business. I had just moved to Oregon, some fourteen-hundred miles away from where I'd lived, combining a family, starting a new business and it started getting the best of us. I got pissed one day and started telling Brian, 'We've got to do something. We're not married to each other, we're married to this damned cafe. And if we don't do something, start making some changes right away, this is headed for disaster". We talked about it and we decided to pray for a balance in our lives. There was a certain period of time. We decided to pray for maybe fourteen days. Each day, we'll pray for this balance. Probably about a month later I started feeling a little odd. We went into town and I bought a pregnancy test and I found out that I was pregnant at 38 years-old. And being a type 1 diabetic and Brian having survived testicular cancer, was pretty miraculous that we would even conceive.
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Brian: The doctor did say it would be a shot in the dark.
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Manning: What a joker!
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Janelle: Yeah. (laughing). But it was pretty amazing. People say you better be careful of what you pray for. I'm not careful.
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Brian:Looking back on that, on praying for balance and for it to be like this--for Natalie to be born, we were a combined family. We had each been married before. Combining a family, there's always bitterness, or step-father, step-mother issues. When Natalie was born, there was a lot of healing that came to our family and to the children. There was this sense that Mom and Dad, you know, Brian and Janelle. This was cool! And now there's a baby sister and now there's a lot of love. All of the kids, except for my daughter, Heather, were in the room when Natalie was born. So that was pretty good birth control too, as in "Wow, we don't want to cause this!" So Natalie came into our world and blessed us with her presence. For ten years, we had her beautiful presence with us and there was a lot of healing. She was so proud of her heritage of being Native American, even though she looked pink. She was excited for the summer sun to come out because she tanned right away. People didn't believe her but she was half Native American.
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Manning: Janelle is Native American.
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Brian: Yeah. She loved her family back home in Montana--the Northern Cheyenne Tribe. That's what she loved. She loved the Pow-Wows and going back for the Sundance. She talked about it and she studied it and learned and asked questions. She did this from Kindergarten on with anything we were involved with, she would share at school during Show and Tell. She was six. That puts her in the First Grade. We went to a workshop with a guy who turned out to be a real good friend of ours--PeemArcos (pronounced "Pwem"), who was from the Shore Tribe in Ecuador and was doing a workshop in Minnesota and Natalie went. She went every where with us. If she couldn't be there, then we decided we probably didn't need to be there. We really looked at everything that we did. Peem and Natalie hit it off right away. Peem noticed that she was scared of fire., and felt that kids really shouldn't be afraid of fire. So, he worked with her for three days as a Shaman and then we did the workshop and he invited Natalie to be his helper. And we look back, but even then we knew it was something special. But now we really realize how special.
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Manning: For those who may not know what...
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Brian: ...A Shaman is a lot like a Medicine Man. He has different teaching and techniques to help the human body to heal or the mind, body and spirit healing process.
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Manning: So, she was very in tune with that.
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Brian:Natalie was very in tune with that. She would talk to her Mom about certain things. Her memory was excellent. Her grammar, her spelling. She was very intelligent. Her reading, she was very worldly. Very concerned about global issues. I used to watch her cry watching TV about Polar Bears in Alaska. She couldn't understand how great this country's supposed to be and they can't figure out that the ice shelf is falling into the ocean and that nobody cares. She was very troubled by that. Humanitarian issues? It was sad. It's hard as a parent. And I thing that a part of that is that Janelle and I are older. So, everything isn't politically correct. She would ask us tough questions. 'How can people allow this to happen?" "Why are there people on the streets of Minneapolis without any food? Do they not have a house? Do they not have a family who loves them? Can they not go to a church? I thought people were supposed to be able to go to a church if they needed help?"These social-economic questions. You're talking to a six, seven, eight, nine ...I mean. Since she was able to talk, she was asking questions. But we went to this workshop. Then Monday is Show and Tell at her school. There's things that Peem did with us and one of them was that you snort tobacco. It's a liquid tobacco that goes in and cleans out your sinuses, and I mean you go cry. If you haven't cried in years, it opens up things. It's a grounding kind of a medicine thing. And she tried it. Then they blow fire. That's kind of how they clean the spirits around your body and they cleanse you. With Janelle, the Native American Tribes, they smudge.
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Manning: I'm sorry. What is smudge?
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Brian: With sage, sweet grass and there's smoke all around you.
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Manning: Okay.
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Brian:So Natalie goes to Show and Tell and she took up the whole hour. And when she got home she said. "Well, I went up first and the kid's were so interested and the teacher said 'Just keep going, keep going". Janelle and I looked at each other and we thought, somebody would be coming to the house to pay us a visit, probably Child Protective Services (laughter). Later in the week was Parent Teacher Conferences and we went. Her teacher said, 'Well, Natalie is an exceptional student, Here is some of her art work and everything is good' and she closes the book and says. 'But what I really want to talk about is what you guys did last weekend'. She was real interested in that and so we explained it to her. She was just amazed at the detail and how Natalie could explain this. So, in a small town in Minnesota, Natalie is explaining to her First Grade class the teaching s of a Shaman from Ecuador and the response was that people began talking about alternative ways of healing and doing things. Then when Natalie was in the Fourth Grade, she did a movie slide show on Ecuador. She did it once in front of the class and they filmed it and they had her do it again later with nobody in the room where it was quiet. She had a love of Ecuador. She had a love of humanity. Her favorite person? She loved Rosa Parks.
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Janelle: We watched a program on TV about the civil rights movement and she was so astonished at what went on, that those things could have actually happened...
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Manning: ...in our country.
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Janelle: ...when they were using the fire hoses, it was crushing to her to see that.
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Manning: And the attack dogs...
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Janelle...Yeah.
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Brian: When she realized that it happened to her heritage--to the Native American community, it really bothered her. And when she found out it wasn't being taught in schools it really bothered her and she questioned that. More than once she took up a petition to Jill, the principal at the school and said, "Why can't we do this? I know of a movie that can be shown".
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Janelle: We were watching Al Gore's "An Inconvenient Truth". She wasn't very interested right at first, but finally came downstairs and was sitting and watching it with us. The next thing we know, she comes home from school and said, "Guess what I did? I went to see Jill and first I asked Cassy if we could show the film and we can't. We can't show it to the kids at school because it's PG-13. So I went to Jill and Jill said, you have to take a petition around"...and this is at the very end of her Fourth Grade year. She took a petition around to get "An Inconvenient Truth" shown in her elementary school. She was quite a little activist.
Good Morning! I rose this morning not knowing what to post. But I knew one thing. We still have a lot to cover this month. Brian and Janelle Jones just submitted photos to me last night for their upcoming appearance on "The Interview" (I'm editing the final draft), we have Hope for Trevor Tredaway, and we have the spirit to give it all we've got "One Day at a Time". So, I searched for this video and found it. The Rolling Stones have always been fun to me. So, turn up your speakers (but try not to spill your morning coffee over this). If this doesn't get you going today, well...I'll be back with more straight ahead so...
Good Morning: I began this BLOG in December, 2005 and have come to love and enjoy the many, many friendships I have made here. Each of you has championed me in all of my business and career endeavors I have shared, and even suffered through my kooky sense of humor on occasion. I hope you know how much I value everyone who stops here for a visit! Now a word about Trevor...
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Truth be told, I have been blogging so much about 4 year-old Trevor Tredaway that when September rolled around, National Childhood Cancer Awareness Month frankly caught me by surprise. But it was fortuitous. Trevor needs us and we need him. While I work on his fundraising concert in Midland, Texas today, I wanted to give you an honest update on his latest MRI taken at St. Jude Children's Hospital in Memphis. While Trevor was in Memphis, his Mother Melinda visited a Chili's restaurant. Word spread quickly that Trevor was a cancer patient at St. Jude and within minutes, the staff picked him up and carried him back to the kitchen for a tour. He ate a piece of bacon and as I understand it, he even helped uncork a wine bottle for patrons at a table. The look on his face in the photo I posted above is one of Joy. And for those of you around the country and world who haven't met him as I have, this is one sweet little child who will tickle your heart. He's a very determined little boy who survived a brain resectionng last November 10th and this was a miracle because it resulted in removal of 95% of an infiltrating astrocytoma (a cancerous brain tumor). However, last week, the MRI scan revealed that the portion that was left behind by the surgery has begun to grow into the basil ganglia and the empty space left over from his operation. At this point in time, Todd and Melinda are focused on this upcoming Wednesday when a panel of doctors will meet to discuss treatment options with Trevor's Chemotherapy. His surgeon feels that it is far too risky to operate a third time with the chances that it could leave Trevor with paralysis. Nevertheless, there will be more information to come in the days ahead and we all remain hopeful. Please keep this special little boy who has touched me so much and who I have spent time with in your thoughts and prayers. Last November, it seemed there was no answer. And then a door opened up. We are praying that another door of positive opportunity opens up for Trevor once again. He is currently showing no symptoms. To know him is to love him. I felt you should each have an update on his condition because I believe in being honest and sharing information about this special little boy. Thanks for hanging in here with me during a month filled with information aimed at helping to raise awareness about Childhood cancer and what we can do to help take a step towards the day when children like Trevor can lead cancer-free lives. We remain committed to helping him. Michael
Kids have always figured prominently in my life. Back when I was in broadcast management, I directed that public service air time be devoted to Women & Children's Health issues. Kids ...of all ages... never fail to inspire and amaze me. They are wise and resilient and have so much to teach us. It seems as if there isn't a week that passes by where some kid crosses my path and makes me laugh about something I had forgotten or maybe never even considered. This is a special month. I sincerely hope that I bring Honor to the children who need us most right now, and if in some small way, someone happens upon this Blog Post, may they know that September belongs to the children who are depending on us to help them with everything we've got.
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September is National Childhood Cancer Awareness Month!
As you can see, I'm in good company on weekends. This beautiful Arabian horse is my buddy. He is Chestnut Brown and has the best personality. If only everyone could be around horses on the weekend! There is an unmistakable spiritual connection between horses and people. I am convinced of this fact and Sundays are a high point of my week. I hope your weekend is a great one too! I am still quite a bit behind in visiting your websites, due to the down time of my computer when it was in the repair shop last week. Gradually, I will be making progress to get caught up with each of you. How are your weekends spent?
As a reminder, we still have Brian and Janelle Jones coming up on "The Interview" . I am currently at work transcribing their visit with me from September 5th as promised. Also, we are assembling photos. Your patience is appreciated. Thanks so much for stopping by! Michael
Yours Truly with Rich Mackney at his Birthday Party! -
Note from Michael:If any of you live in Arizona and plan on attending this event, please introduce yourself to me. I'll be at the event described below.
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While I am transcribing the visit I had with Brian and Janelle Jones for my Blog feature, "The Interview", I wanted to mention a future Guest as well. Rich Mackney is a dear friend of mine. We met 14 months ago during Athletic Physical Rehabilitation while I was undergoing rehab on my right shoulder following a fall I sustained at home last year.
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Rich was diagnosed with Lou Gehrig's Disease (ALS). There is no effective treatment for this disease but a few weeks ago, Rich went to the Nepsis Clinic and lab for a stem cell transplant. This lab is on the cutting edge of Restorative and Regenerative Medicine. The lab used a novel, patent pending technique that makes it possible to vastly increase cell replication rates. These new stem cells will hopefully restore motor neuron function. This technology is so revolutionary that the patent attorney who filed the patent application, John Connors, JD called it "the most incredibly inventive cell replication method he had ever seen". No patent for accelerating cell replication anywhere in the world comes close, according to Mr. Connors, who has more than 30 years experience in the field.
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Together we can Help Rich offset the cost of his recent stem cell transplant & Win the Fight against ALS.
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WHAT: Live music (from The Pongaboys), Drinks (no host bar) & Appetizers. Bring your friends, everyone is welcome!
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WHEN: Friday, October 2nd from 6:30 PM to 10:30 PM.
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WHERE: Sunridge Canyon Clubhouse, 13100 North Sunridge Drive, Fountain Hills, Arizona.
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COST: $45 in advance per person/$50 at the door.
For more information, please ONLY contact Daniel B. Eastburn, Ph.D. at (623) 581-1163.
Can't attend but want to contribute? Send donations to: "Rich Mackney ALS Warrior Fund" at any Bank of America, to Business Account No. 4570 0733 4458. Throughout his life, Rich was an avid cyclist and athlete. I want to see him back on the road again with his bike. Rich is a generous person who always encourages people who are pursuing their dreams. Now, I want to encourage Rich. Thank you for your consideration. Michael
Dr. Sanjay Gupta, M.D. is a talented and caring Neurosurgeon in Atlanta, Georgia. He practices medicine at both Emory University Medical Center and Grady Memorial Hospital in addition to his duties as a medical correspondent for CNN Headline News. Dr. Gupta has been out of the country on assignment, but will return soon. At that time, I feel confident that he will review materials I have provided to him and his staff. These materials include contact information for Trevor's family, a summary of his medical condition with an infiltrating astrocytoma, his Caringbridge website, photos and much more.
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This is a very compelling opportunity during National Childhood Cancer Awareness Month if Dr. Gupta and his CNN producer and staff are willing to give Trevor's story exposure as a way to intensify childhood cancer awareness. Melinda and Trevor will be available to visit with Sanjay and the nation can meet this adorable little boy who is the focus of our efforts to reach out and help him. While we are all anxiously awaiting word from Dr. Gupta and his staff, we are also very humbled by the time and consideration they have provided to us and I am in a dialogue with his staff at CNN.
Kidd Kraddick is another talented guy in my profession. In fact, we worked in the same market (Dallas/Ft. Worth) for years. Interestingly, we never competed against each other in radio for two reasons. First, I was a news anchor and secondly, even if I were a morning radio personality, there is no competing with Kidd. He is tops in the ratings when it comes to his show Kidd Kraddick in the Morning. Kidd was brought into consideration by our volunteers who listen to his syndicated show and they have submitted proposals to "Kidd's Kidd's"--a non-profit organization founded by Kidd himself to address needy children in our communities. Like Dr, Gupta, Kidd has received an expedited Fed Ex shipment containing the same materials I have shared with Dr. Gupta in the hope that Kidd will consider a phone interview with Melinda. Melinda is a 6th grade teacher with a Masters degree in Elementary Education. She is a lovely gal and can speak as Trevor's mother about where Trevor has been and what the goals are for his treatment team in Midland , Texas and St. Jude Children's Hospital in Memphis. Trevor will receive an MRI on September 16th to gauge progress on two small tumors in the brain and two more on his spinal cord. Trevor lives in a market where Kidd's broadcasts are heard.
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To be fair, I should point out that like Dr. Gupta, Kidd receives many similar requests as mine and I am only asking for his time and consideration to interview Melinda, myself (if needed) and perhaps to post a photo of Trevor on his website with information for listeners to help. Neither Kidd nor Dr. Gupta are obligated. But we hope their hearts are touched as yours have been in responding to any news I post about this remarkable little boy. How often I have thought to myself, "What if this was my son?" If you are a parent, I don't need to ask you how you might feel in Todd and Melinda's shoes. We can only imagine. And from that standpoint, we can also choose to help.
Michael Manning's Update: On behalf of "Team Trevor": Sue, Jennifer, Lisa, Brandie, Kelli and myself I really deliberated with what to write this morning. I believe in being totally honest and transparent because the longer I am on this planet one thing has become clear to me. Whenever we have an opportunity to live our lives out of Love and not Fear, we are blessed with a Divine Gift whenever we have a chance to speak with another person and connect with them on a substance level. There isn't a week that goes by where I'm not sharing Trevor Tredaway's story during National Childhood Cancer Awareness Month with a kind stranger who becomes my new friend. We exchange business cards, and invariably they are invited to visit this website and Blog. So, this morning the sun has risen, and I have another day of life to share with each of you reading this post about what is taking place with "A Concert for Trevor". Let's get to the facts.
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LAST WEEK: Our venue in Lubbock (this was an initial concert fundraiser) informed me that they had a problem with a concert that involved fund raising and public relations. In all of my years in business, I have never heard such feedback. The term fundraiser was used liberally for over two-months with this organization and they understood we were seeking to help a 4 year-old coping with brain cancer. Since we are a small group of volunteers open to attracting more volunteers, I realized long ago that we needed a public relations firm or professional who would help me implement our Media Plan at least 4 to 6 weeks in advance of our event to allow Melinda Tredaway, Trevor's mother and I to be available for any radio or television airtime that was provided to us that would lead to what is called in event management, "a mutually beneficial transaction". This was lost on the Lubbock venue and after a conversation last Tuesday with one of the key principals, it became apparent to me that the person I was dealing with was not properly focusing on my extensive communication more than two minutes at a time. There was simply no way I was going to allow a sloppy, haphazard event to be staged in Trevor's honor without the component of raising funds for his extensive medical costs in addition to raising public awareness of his plight. With this in mind, I submitted a letter withdrawing our plans for a Lubbock concert and decided Trevor deserved nothing less than the best. So, we are squarely focused on one solid concert that will take place in Trevor's home town of Midland, Texas. We have a Media Plan, the backing of the Midland Telegram Reporter newspaper, The American Cancer Society, Mid-Memorial Hospital and need only a venue and a band. Fed Ex Office & Print Centers will handle production of posters to be placed in retail establishments in the Midland area. Next...
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MIDLAND VENUE:We are in need of a venue. Our potential venue should ideally have stage, a sound system (with a sound technician), and lighting. A representative from The Midland Federal Credit Union will be available to accept the door cover that will be the fund raising component to help defray costs of Trevor's medical treatments not covered by his insurance. We will also require an artist or band willing waive their performance fee. I will open the show with a short acoustic set. The venue will retain all food and beverage sales and we will determine a date and a time for the concert. This will be a straightforward celebration of Trevor's life that will allow us to help the family properly. The last thing any parent needs is to worry about is finances at a time when their energies and love need to be focused entirely on helping their child to emerge from medical treatments to live a cancer-free life, and we volunteers are committed to this goal. Anyone with any contacts that would help us achieve our goals is encouraged to email me at: michaelmanninginfo@GMail.com.
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MEDIA OPPORTUNITIES: As I have previously stated, I am the organizer of this event. I began work on "A Concert for Trevor" back in November, 2008. Trevor's story is one that is at once inspiring and filled with Hope. I am available for radio guest interviews and even Blog interviews about this concert initiative. Our Media Plan in Midland will be to contact four television stations and a News/Talk radio station along with The Midland Reporter-Telegram (already following this project). We are open to improving our reach and welcome helpful suggestions and contact names toward these ends.
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SUMMARY: Organizing and execution of this concert will result in three things: 1.) We will increase awareness about children with cancer in America. 2.) Through our efforts, the media can be a positive agent of change by helping to bring awareness to Trevor Tredaway's unique story of the heart. 3.) The concert will be a night of music that will be fun and unforgettable. Nailing down a venue, an artist and a date and time will occur in that order. This has been a tremendous effort and I want to close out this update with a word about what is possible with the love and friendship of people who care like Jennifer, Lisa, Brandie, Sue and Kelly. Their involvement is the definition of "Love in action". I can tell you that we are not easily discouraged. We are a focused, positive and energetic group that will not rest until we organize the components of this concert and provide The Tredaway Family with the Love and Supportiveness they need as Trevor continues to make his way through Chemotherapy and testing. Please keep us in your best thoughts and prayers. This project is so much bigger than any of us individually. It is a blessing. I can say on behalf of the team that it allows us to step outside of ourselves and any trivial concerns taking place in our own lives to reach out and help this adorable little boy. We need Trevor in this world more than ever. He has an infectious sense of humor and he is simply a Joy, believe me. The bottom line is that we will get this event organized, scheduled and executed. We welcome input and help from any of you who care to become a member of our team and of course, I'll keep you posted as we move forward. Thanks for your time and interest. Here is Trevor Tredaway's Website where you can read about his story, see his photos and learn from Melinda what plans are ahead this week: www.caringbridge.or/visit/trevortredaway. Love and Peace to All,
Top: Melinda with Trevor During His Recent Chemo Treatment
Below: Trevor, age 4 with his sister, Morgan, age 2!
Hello All! I guess there's never a good time for a computer hard drive to crash as mine did. But it doesn't discourage me either. I had just started to transcribe my first taping session for our feature "The Interview" with my friends (and Special Guests) Brian and Janelle Jones. My computer screen froze and the evening ended before it started, really. Backing up a bit, last Saturday night, we were in Tempe, Arizona outside of a cafe where I had taken us to dinner. We found a nice outdoor table with chairs to settle in after dinner. Brian and Janelle are a Joy and you will love meeting them here on these pages. We have pored over photos they have of themselves, and of course of Natalie. Your hearts will be warmed by these friends who are so close to me.
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While my computer is being repaired, let's have a word from Melinda Tredaway, Trevor's Mom and just a short update on the concert I am working on with a wonderful group of women who have stepped forward to volunteer their help. First, an update from Melinda:
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"Trevor's counts remain stable after a cough and cold for the past week and being around other kids. What a blessing that is. He did not even flinch when nurse "Piggy" put the needle in his port. That's great, but it also sucks that he is so used to needles and blood work and chemo. Todd was at chemo with us today, and I was able to hold the needle. Trevor did still tell me that I didn't know how to do it. He was quite the little turd today.
MRI is a week away. Trevor and I leave on Tuesday and return on Thursday. Morgan is staying with Cody and Kelli (thanks guys!) It is really starting to drive me crazy, but I guess they always do. His pain is well under control, so I can only think, hope and pray that it is because his body is finally stopping the tumor growth.It is still Childhood Cancer Awareness Month and apparently Ovarian Cancer Awareness Month. I saw a segment on the Today Show about ovarian cancer, and I'm already hearing about Breast Cancer Awareness Month, which is great. I just think the kids need a little more exposure than what they are getting. Todd and I have talked and think that it will take some famous person's child getting cancer before the awareness really starts up. Remember to eat at Chili's on September 28th to support St. Jude. Thaaaaaank Yoooooooou!
I know that there are many worse cancers than what Trevor has, so crazy as it is, I guess I'm so thankful for the type of tumor he has....even though it is acting more aggressive in him. We are 10 months without a seizure and almost 2 years past diagnosis. That is a lot to be thankful for!!
Blessings to you and yours, Melinda
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Planning and assembling the components for "A Concert for Trevor" began in November, 2008. We are on the cusp of confirming some significant media initiatives underway and I will continue to keep all of you informed as events warrant. Thanks for your visits during this down time with my computer repairs. The one thing I know about all of you is that there is a tremendous amount of Love and Caring out there for Trevor, and that is what matters right now. Talk with you soon!
Happy Labor Day to all of you! This video struck me as a very nice balance for today. It is the newest song I have learned to play on my Takamine Acoustic, so I thought, "I haven't featured this in a while--a Sing A Long". But since CosmicCrayoladid sing along on Guy Clark's "L.A. Freeway" from her laptop when she last visited my site, I've decided to do something she would have liked. So, in the spirit of her friend and mine, Golfwidow (of "Golfwidow's Ministry of Silly Walks" Blog fame), I am dedicating this post to CosmicCrayola whom we lost recently. This is for you Karen...
Boats to Build (Guy & Susanna Clark, Verlon Thompson)
It's time for a change I'm tired of that same ol same The same ol words the same ol lines The same ol tricks and the same ol rhymes
Days precious days Roll in and out like waves I got boards to bend I got planks to nail I got charts to make I got seas to sail
Chorus
I'm gonna build me a boat With these two hands It’ll be a fair curve From a noble plan Let the chips fall where they will Cause I've got boats to build
Sails are just like wings The wind can make em sing Songs of life songs of hope Songs to keep your dreams afloat
Chorus
Shores distant shores There’s where I'm headed for Got the stars to guide my way Sail into the light of day
Chorus -
If you have been along on this journey with me, you know that we are awaiting confirmation of both Media and Concert details from some very fine people who have the ability to raise public awareness of September as National Childhood Cancer AwarenessMonthgenerally, and our commitment to organize and produce "A Concert for Trevor Tredaway" more specifically. The lyrics of this song, "Boats to Build" by Guy Clark says it all. This is a month to be focused on the children who need us. We have a wonderful opportunity to respond in ways that are truly unlimited.
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Saturday night, I had the privilege of sitting down to dinner with Brian and Janelle Jones. Afterward, I tape recorded their story about their late daughter Natalie Rose. As I previously announced, Brian and Janelle will be my Special Guests on my BLOG Page feature, "The Interview" in the days ahead. We have had this planned for over one-year and in so doing, we endeavor to turn the spotlights on a form of brain cancer that you may not be familiar with called DIPG. This term is worth a "Google" Search. It stands for Diffuse Intrinsic Pontine Glioma (the cancer Natalie Rose and Gunner Gillespie endured) and during this month, we will also look at two other cancer forms that have involved Glioblastoma (Sahara Alridge) and Infiltrating Astrocytoma (Trevor Treadway). All in the spirit of raising awareness and promoting Positive change. That is the BEST form of any change---POSITIVE--and yes, there is a way to do that. Hang in here. We will do it!
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I will also gradually make my way to each of your blog sites to get caught up, which is always a pleasure!
Gunner's Dad Gus is a Beloved Teacher & Basketball Coach
Gunner was born September 4, 2000 He passed away October 23, 2008 He was 8 Years Old
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Birthdays are for celebrating life. It is a fact that when I hold The Annual Steve McQueen Film Festival on this Blog Page, it is deliberately undertaken during the week in March that Steve was born. Like Steve, Gunner Gillespie is also a Hero of mine with a capital "H".
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How did I come to know Gunner? Well, there's a story about that only God could have written. I had recently returned from Sahara Aldridge's Memorial Service in Cape Girardeau, Missouri to where I was living in Florence, Kentucky. I consider it a tremendous blessing in my life to have met Sahara and her parents, Shannon and Amy. Sahara inspired me to reach out and try do something that was a whole lot bigger and certainly more important than I was. That "something" was to organize a tour bus trip from Cincinnati to Cape Girardeau for anyone wishing to attend "A Concert for Sahara"--a fund raising concert I had first heard about on CNN Headline News. It was eventually assembled and performed by rock legend Rick Springfield. The performance was held at The Show Me Center Arena on December 8, 2006. I was able to make a number of media appearances in an effort to mobilize support for Sahara after delving deep into her own story and making the choice to become involved from the city I was living near, at the time.
Just two weeks after Sahara passed away from complications of a cancerous brain tumor on November 5, 2007, Shannon and Amy became the first people to mail a check to a bank account created for the medical needs of a special little boy who lived in Benton, Kentucky named Gunner Gillespie. When Sahara's website was active, The Aldridge's mentioned hearing of Gunner's diagnosis of DIPG (Diffuse Intrinsic Pontine Glioma) which is cancer of the brain stem. They asked for prayers, and mentioned how their hearts went out to this little boy and his sister Garlynn and parents Gus and Janna. So, at the suggestion of Shannon and Amy, I decided to visit Gunner's Caringbridge website. As January, 2007 began, my Pastor of 23 years, B.J. Chenault and his wife Evelyn sent me a short e-mail that basically read: "We are so concerned about this little boy. Please pray for him". That boy turned out to be Trevor Tredaway.
Like so many others at the time, I was stricken with tremendous grief after Sahara passed away. I really did not expect her to die. I can't explain why. I took my cues from Rick Springfield and I guess whatever doubts I may have had were canceled out by seeing Rick's tremendous Determination. Also, as so many of us did, I followed Sahara's situation on a daily basis...we all did. All 3,000 of us who traveled to The Cape for Rick's show. A group of us staying at the hotel a day before the concert, bonded together and became life-long friends. I was not physically well back then, and my worsening health combined with the grief I was feeling left me exasperated with B.J.'s prayer request. So, I set it aside for a few days and tried to learn, in the interim, what I could about this boy in Benton with the most interesting first name of "Gunner". Who in the world could have possibly known but God Himself that Gunner's family (and later Trevor's) would contact me after I relocated across six states in December, 2007 to Scottsdale, Arizona?
A number of doctors who had consulted with Gus and Janna had offered limited options to treat DIPG--a virulent brain stem cancer that affects approximately 200 children in the world annually (you will be hearing more about DIPG soon from my Special Guests Brian and Janelle Jones on my Blog feature, "The Interview"). With a tremendous amount of Love, Faith, and Hope The Gillespie's contacted me in the spring season of 2008 and asked me if I would consider scouting out a hotel for them near an alternative cancer treatment clinic where they had decided to bring Gunner to for treatment in Scottsdale. I asked them for more specifics, then visited a number of hotels in-person to see what I could find. When the family arrived, I was delighted and I drove over to their hotel and took them out for a Mexican dinner. I have loved this family ever since! At the restaurant I was a quick study too.
I learned a lot from watching Gunner interact with his then five year-old sister, Garlynn. They were fun kiddos and we had a blast. After one travels so far, it is comforting to make a new friend and to be able to just take your time and talk about everything. We were all in high spirits that night and I remember Gunner's fascination with aquariums of fish in the bar area. The way he studied their movement, how they swam, their markings and color, was to witness a brilliant little boy who possessed such a deep and sincere curiosity about life. But fish and reptiles were only the beginning!
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As with Sahara's love of basketball, cats, shopping and cheesecake, Gunner's interests were many. But it was trains that both ignited and captivated his imagination--especially steam engines. Our visits to McCormick-Stillman Park where the Presidential Train of President's Hoover, Roosevelt, Truman and Eisenhower is on static display made for some very memorable afternoons as The Gillespie's settled in for a very long summer of treatments and activities. Gunner was so curious about others. I recall Gunner as a boy who was genuinely interested in what people did for a living and how they went about their daily routine. He would study many wonderful things: how a model was assembled from all angles-- with quiet curiosity that struck me as genius really. My heart told me he was a gifted child in many ways, and I am still convinced of this fact. With people, he was the epitome of Kindness to everyone. I also noticed that he had a heart for other children facing difficulties and he would ask many questions of his mother, Janna about a person or a place that caused him to feel concerned. He was a sensitive and very sincere little boy. After all, the world is such a big place when you are only 7 years old, and you see the potential and wonder and excitement of so many things! Gunner was a genuine people-person. He was gentle, but he had the most incredible sense of humor and boy, could he find funny things to do and laugh about with his little sister. I can still hear his giggle and on one glorious afternoon when his grandparents came to Arizona, I became the Official photographer at the train park on the Merry-Go-Round.
In later months, during a visit to the world's largest toy train model layout at McCormick-Stillman Park, the elderly volunteer men who ran the trains broke with years of tradition. As Janna, Gunner and I were leaving the display building, one of the volunteers tapped on the window and waved us back inside. Carefully, they opened a door and recognizing just what a student Gunner was of trains, they led him inside the display that was otherwise off-limits to the public. I think Janna and I easily shot over 100 photos with our cameras from the small and tight bleacher viewing area situated above the layout display involving multiple trains operating simultaneously. Gunner listened to explanations, and he nodded several times as the men made a point about a train car he had inquired about. Judging from his smile, he was ecstatic! As the other parents and children around us learned about Gunner's medical situation with brain cancer, they appeared to me to focus on Gunner in the most loving way. We don't see enough of that kind of compassion within adults, and yet this little boy from Kentucky was reaching their hearts and inspiring them with awe. This happened many times.
Gus shared with me how a casual conversation with a man seated near them during a family outing to an Arizona Diamondback baseball game led to the man gifting The Gillespie's a much needed vacation escape to Disneyland in California aboard Southwest Airlines. I can remember picking the family up at Phoenix Sky Harbor Airport on their return trip and everyone looked incredibly happy and excited as they shared their adventures with me in my SUV. Later, back at the hotel we sat on the floor and looked at many pictures.
A British Airways flight crew (Flight 2) decided to befriend Gunner and throughout the season, model airplanes and post cards from the Pilot and First Officer arrived to The Gillespie's hotel room with regularity. Families with children around the country and the world who followed Gunner's journey shipped so many toys to their hotel, I had to laugh at how many boxes we shipped back to Kentucky (at least 50 or 60). Gunner and Garlynn swam and explored areas of Scottsdale, Carefree, and Sedona during their long stay. But Gunner's favorite place was the Big Red Rock in Carefree, Arizona that was on the way to his favorite Mexican restaurant. Last summer, after Brian and Janelle Jones relocated to Tempe, Arizona after suffering the loss of their 10 year-old daughter, Natalie Rose, who also had DIPG, I was delighted to be reunited with both families as we shared so many memories over dinner at Gunner's favorite restaurant.
It is said that during difficult times, it is the tender mercies of strangers that rise to the surface of life with unconditional love. As Gunner's physical condition deteriorated, Janna and I spent some very long nights at Phoenix Children's Hospital's Intensive Care Unit with Gunner. The building had so much reinforced steel and concrete that I would excuse myself from the Emergency Room to step outside and telephone progress reports to Gus in Kentucky and then, alternately, to Brian Jones (who took so many of my calls well past 12 Midnight while he and Janelle were still living in Minneapolis). Eventually, Gunner was admitted to a hospital room and I made a food run for us.
On August 9, 2008 a very special family staying in the same hotel while their home was being built, reached out to Gunner with the gift of a Lizard and a corporate jet trip home to Kentucky for the last time. This new friend was an extraordinary executive with a darling wife who had been a television news anchor here in Phoenix, and they have three lovely daughters. We loaded our two SUV's and headed to the Scottsdale Airport--Janna and Garlynn in one SUV, while Gus rode with me in mine. Gus and I had many sobering conversations man-to-man about Gunner and the family and how he and Janna were balancing so much with the school season about to resume. Gus and Janna are very dedicated high school teachers. On the tarmac, we loaded the plane and took photos of each other minutes before The Gillespie's boarded for their final trip home. It was a very warm day, but not humid for August. We all hugged our goodbyes. Arrangements were made for me to be driven onto an airport cross way in a special motorized cart with a driver. As the private jet carrying my dear friends passed, I could see Gus seated in the right cockpit seat smiling and waving with a baseball cap and wearing dark sunglasses. Janna and Garlynn took aisle seats so Gunner could wave "Goodbye" to me through the plane's window. I can still close my eyes and see his little hand waving excitedly as the plane passed just twenty feet from where we sat. My chest started to hurt and the driver asked me if I was okay. I assured him it was nothing, but of course I was facing the fact that my friends were leaving after months of very expensive and taxing medical treatments. While I hated seeing friends whom I had grown to love dearly leave Scottsdale, I also knew it was the right decision for Gunner. So many thoughts were running through my mind. So many memories. I kept looking back to the beginning of the year as the plane lined up on the runway to a "Hold" position. The plane began it's forward roll and I tried to focus on the routine taking place inside the cockpit as the pilot advanced the throttles for a swift takeoff and left bank high above the Arizona desert that was home for The Gillespie's (and me) for months. I stared at the aircraft until I couldn't see it anymore. Safely out of sight back on the ground, I broke down and cried. My driver , God Bless him, had recognized Gunner from two news stories that ran on Channel 12 TV News here locally. He was getting choked up and all I could remember was how grateful I was hat he kept the cart parked on the runway for some ten minutes after the plane departed so I could collect myself emotionally. I was a complete mess. It was not a good day.
Every morning, I wake up and open the blinds of my top floor apartment and gaze out my bedroom windows eagerly to see the mountains. From there, it's a walk to my living room to open the blinds and again, I see the glorious mountains. I dress in my bicycle pants for my workout, throw on an ASU T-shirt and make my way to the kitchen to start the coffee pot and begin lining up my bottles of vitamins and supplements to start out the day. In the narrow passageway from my dining room to my kitchen sits a long wood and glass table with three framed children's photos on top: Sahara Aldridge, Gunner Gillespie and Trevor Tredaway. In front of Gunner's photo, there is a diecast scale model of a 32' Ford Hot Rod I gave him as a gift. After Gunner passed away, Janna called me months later and asked if she could return the model diecast car to me so I could have something to remember Gunner with. I was so moved by her call. Janna told me that in Kentucky, Gunner often went to sleep at night with that model car on his chest.
How I came to be blessed in these circumstances? I often say, if you had some large Push Pins and some colored Yarn, you could create my own journey from Cincinnati, Ohio to Cape Girardeau, Missouri. Then a piece of yarn would run from Benton, Kentucky to Scottsdale, Arizona and yet others from Midland, Texas to Scottsdale and Minneapolis, Minnesota to Scottsdale. Four sets of parents whose lives inextricably intersected with mine. My Pastor carries a laminated card in his wallet that reads: "Today, God has you right where He wants you. There is no Fate, Chance or Luck that Governs You". When I was driving a large Penske moving truck with my SUV on a flatbed trailer across the country, I stayed at B.J. and Evelyn's home for a couple of days in Texas. He and I stayed up well past 3 AM in his study discussing Sahara Aldridge. I had yet to meet Gunner or Trevor in-person and I needed B.J.'s wise counsel on heavy spiritual matters of the heart. We talked for at least five hours. I needed that. I often think about our talk when I lay down to sleep some nights. It gives me comfort, and I am now better suited to answer a call of the heart when it involves a friend. I have peace of mind.
What I celebrated quietly yesterday was the birthday of a dear, sweet little boy whom I loved and who loved me back unconditionally. We were true buds. In fact, I sat on the floor and helped him eat his soup and take his meds while his parents attended to packing for the plane trip on that last day in Scottsdale. I'll end this special BLOG Post with a humorous story that Gunner would appreciate.
Gus and I were sitting on the couch in the hotel room watching "America's Funniest Videos", while Janna was in the bedroom packing. On the television, film footage of a boy Gunner's age was shown at a wedding reception. As the Bride stood and bent over to look at the huge wedding cake, the boy suddenly appeared in the camera frame, grabbed her by the back of the head and pulled her face down into the cake! You just had to be there! Now, I feel that I know Gus pretty well. But I've never seen him so mortified as he said afterward, "Oh, Man!...I guess she wasn't too happy about that. Did you see that, Michael!" Gunner had been pacing back and forth from Janna's bedroom to the living room so he could watch re-runs of the videotaped incident. The more they re-ran that film footage on the television screen, the harder Gunner giggled. Gus tried to bring some order to the situation by stating "Now Gunner, that's not funny"--which only made Gunner and I laugh harder! Soon, we were both just giggling totally out of control. I don't know what was funnier--the video or Gunner's increasingly energetic giggling. I remember relishing that moment and feeling so happy at seeing Gunner laughing so hard! And I guess that is the memory I will always have, among many, about this young man who made such a special place in my heart forever. For eight years, he was in this world and over a period of months, he added such a wonderful dimension to my own life. I was really Blessed!
Feel free to visit Gus and Janna at Gunner's Caringbridge website at: http://www.caringbridge.org/visit/gunnergillespie.
Good Morning. I wanted to give you a break from our work on the fund raiser. And as hard as it may be for you to believe, I really wasn't "Googling" for Danica Patrick when I stumbled upon this short film (although, her husband is my age and met her in a nearby facility where I work out). No, seriously. I was thinking about my fellow Bloggers, Martini (of DMC & Me fame) and DJ DAVY B who have been such stalwart Blog buds. I also thought of Seraphine (of Encore Seraphinefame) and PM Prescott, Sage (of Musings fame), Seamus (of Damp Dog fame) Jean LucPicard "across the pond" and Diane (of Sunday Breakfast fame), new Bloggers like Protege and so many of you who lurk but are loyal! One thing led to another and I ended up here.
Just listening to the people in this film led me to realize that we often don't teach kids that failure is possible, but that it is never final. A lot of my best projects failed. I failed to rescue people from themselves (it's futile, forget that one)! I failed to pass endless auditions for television commercials. In 2004, I pestered (persuaded) three United States Senators, a Secretary of Transportation, a Chairman of the board, all of the individual board members of an airline in Chapter 11 (that was about to disappear), the president and CEO, and a Bankruptcy Judge until they flew me to Washington for a bare knuckled meeting. Once there, I presented my Alternative Plan of Chapter 11 Reorganization. The CEO listened to my bold presentation (and believe me, I was bold --I had nothing to lose). After I finished, he drew in a breath, asked to review my flip chart quietly and admitted that I was "ninety-nine point nine percent on the mark" , but said (with regret) that their largest creditor would quash my plan because it left them out (let's just say that I am a Boeing and not an Airbus man). I flew back to Ohio exhausted and slept for an entire day and half.
A television network in New York and I negotiated from October 16th through November 2nd, 2006. I was to become their newest Field Correspondent. We ended up walking away from the table, and the outcome made little sense--- then or now! Today, it's been over five years later and we still stay in touch. Go figure! My next project saw me assemble a cable television show as a creator (writer and producer) only to have the concept completely stolen by a famous producer I was consulting with. My attorney tells me I can't mention her name or that of the wildly popular cable television series, but I am allowed to tell you unequivocally that it was mine. What I can't explain is why I'm not bitter about that theft. I'm just glad I'm not a professional actuary because then I'd know how much serious money I lost. I'd rather remain ignorant--even if it took over three years out of my life. And I am being completely honest!
In all of that failure, I was living and doing and building and mending and pushing the levers, twisting the keys and pulling my share of the load. A lot of it is neat just to look back and consider how far along I did make it with certain projects! Many of my friends were standing on the sidelines amazed. One friend's e-mail in Florida read: "How the hell did you manage that!" Wow, life is never boring.
I relocated to Arizona, lost 64 pounds, and dove into new directions. On balance, I've had a hell of a lot of successes and celebration parties., and I know there will be more of them. The walls of my home are decorated with framed mementos. But not without failures. That is what makes the successes so sweet. Larry King believes that "living well, is the best revenge." I'll have to admit. That is an interesting concept. The people in this film, faced down a lot of failure. As you watch, I would be curious to hear from you what examples of failure and successes come to mind in your own lives.
Trevor Tredaway is 4 Years Old and He is Winning! Let Him Inspire You to Become Involved. -
Good Morning: Trevor Tredaway has successfully completed Chemo treatment #26 after beginning this regimen 6 months ago. He is such a happy, spirited little boy who manages to balance meeting new friends, playing and focusing on getting well. Melinda has a new post about Trevor over on his Caringbridge site: http://www.caringbridge.org/visit/trevortredaway. Melinda was generous in sharing some Facts about Childhood cancer. If you love children, if you are a parent or hope to become one at some point in the future, take a few moments to read this:-
The Facts and Faces of Childhood Cancer
Cancer remains the number one disease that claims the lives of our children. Each year cancer kills more children under the age of 20 than asthma, diabetes, cystic fibrosis and AIDS combined.
Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer. That’s the equivalent of two average size classrooms diagnosed each school day.
Today, nearly 80 percent of children diagnosed with cancer become long-term survivors and the majority of them are considered cured. In the early 1950s, less than 10 percent of childhood cancer patients could be cured.
Leukemia's, tumors of the brain and nervous system, the lymphatic system, kidneys, bones and muscles are the most common childhood cancers.
In the U.S., cancer remains responsible for more deaths from one year through adolescence than any other disease; more deaths than asthma, diabetes, cystic fibrosis and AIDS combined.
Combined, the cancers of children, adolescents and young adults to age 20 are the sixth most common cancer in the U.S.
Breakthroughs in pediatric oncology will undoubtedly continue to progress the diagnosis and treatment of adult cancers. Many of the principles in therapy used today in treating adults were first developed and tested for children.
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We will not take this sitting down. This BLOG Page encourages activism that is positive and kind to make significant progress for children like little Trevor. I invite you to take a look back at previous posts on Trevor and to join our growing Team of Volunteers mobilized to make "A Concert for Trevor" a reality. I can tell you from "behind the scenes", we are gradually making measure able progress--my favorite kind!
Yesterday was my day off and I spent a large portion of it with follow-up calls to FedEx letters I shipped over the past week to some very important people who are in a unique position to help us with "A Concert for Trevor". The results are encouraging and in the days ahead, I look forward to sharing that information with you!
For almost 20 years, I have been a broadcast journalist. Before I entered the world of Radio and Television, I served on a non-profit board for Lupus Awareness. I was initially approached to fill in for "just a few weeks" after a Chairwoman of Public Relations resigned during a very stormy board meeting. At the time, I was dating a young woman who owned her own fashion accessories design business. She also was a Lupus patient, and I witnessed what the disease was doing to her life. While we stopped dating and chose to remain friends, I remained on the board and wound up taking (or dragging, in some cases) a medical doctor who was a specialist in rheumatology on over 40 radio and television public affairs programs. After we completed taping each segment, I was encouraged by our host or producer to pursue a career in the industry with my bass baritone voice and so-called gift of gab. While that was a tremendous compliment, I was busy paying attention to something else I noticed: the sheer power of the the spoken word on radio, and the visual image playing out on television screens reaching hundreds of thousands of people, usually on a Sunday morning. This was in Dallas, Texas--a market with almost 4 million people (when I last lived there in 2003) combining the populations of Dallas and Fort Worth (considered by Nielsen and Arbitron rating companies as one market--"Dallas/Ft. Worth", a Number 5 market among the 212 surveyed). I tried to Imagine how many people were brushing their teeth with our program playing over the radio in a nearby room, how many were having their breakfast and coffee dressed in their pajamas, or otherwise enjoying a lazy morning reading the newspaper while our broadcast ran in the background or on the television set as they glanced up from the Sunday Comics every now and then? I was new to the business and had marketing and promotion experience, but absolutely no way of measuring just how many people were really listening to our appearances. When the donations started rolling into our local non-profit chapter, I started to get a clearer picture!
Today, Blogging has suffered a slight fall off to more fun and social media alternatives such as Facebook or My Space. But as a guy who likes to hang in for the long-term, I know that Blogger has already taken away market share from newspapers. I have a friend of mine who travels weekly to newspapers across the country as a consultant, and she can tell you how many cities still have dual newspapers (less than a handful)--or worse, how many newspapers are shutting down--a fact that bothers me. At CNN and other news networks, many news anchors have their own BLOG Pages and (trust me) this electronic medium will ultimately rebound and see a resurgence. There have been other changes too. This time around, I have business metrics (hard numbers) to back up my observation. Let's look at just the past 90 Days on this site for example.
In June, 19,448 people visited my Blog site (I hope they were also encouraged to take more than a casual look at my full website this Blog is a component of).
In July, 17,628 people stopped by (with vacations in full swing).
In August, with vacations continuing on East Coast beaches from the Carolina's to St. Thomas, 18,183 people managed to visit me. This brings me to a question:
Have you ever been to a sports stadium that was half-full? Well, these numbers will fill up almost half of any large sports stadium in the United States, so these are serious numbers for a guy who isn't currently on an ABC, CBS or NBC affiliate station at the moment. With my Website, the worldwide web--once called "the information super-highway"--is a powerful tool to communicate with others 24 hours a day/7 days a week. In fact, on my NEWS Page, I often post a "tongue-in-cheek" byline that states: "Visit my Full Website 24/7 at: www.michaelmanning.tv".
On a more serious note, September is National Childhood Cancer Awareness Month! After signing a petition here at: Cure Childhood Cancer - Raise Awareness & Funding - The Petition Site, I decided that sure, I'll post some casual Blogs about a variety of cool subjects that cross my mind. But among them will be information about brain tumors children are diagnosed with such as Glioblastomas, DIPG (Diffuse Intrinsic Pontine Glioma) and Infiltrating Astrocytomas. Why? Because children are our future and we have a responsibility to do every single thing we possibly can to "raise awareness and funding" that will lead to improved treatments and ultimately a cure for these diseases. I might as well tell you now: I have two surprise Guests who will be stopping by on "The Interview" as well. In this regard, I must tell you as I sign off. I tend to think a bit "outside the box" on many projects. This is one of them. As such, I don't view September as a sad month; I view September as a month to Celebrate the lives of brave children who deserve a voice, and a fighting chance to live a cancer-free life. To the best of my ability, I will strive to deliver that in the blog posts ahead. Thanks for stopping by and I hope your week is a good one! Michael
Basically, I'm a Public Relations Consultant with a background in Broadcast News. I've worked as a Reporter and Anchor with PBS, ABC, CBS & NBC affiliates and in Cable Television. I'm active in Radio & Television Commercials, Guest Speaking engagements and I enjoy writing, music and sports.
