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 Pontine Glioma". 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, DIPG has 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 with DIPG with 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 DIPG diagnosis 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--Peem Arcos (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.

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Coming Up Next: DIPG Defined...