DIPG: THE INTERVIEW PRESENTS BRIAN & JANELLE JONES (PART 2 OF 4)

Brian & Janelle with Natalie
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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 DIPG is. 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 with DIPG in 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 Pontine Glioma 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 DIPG children...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!

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Coming Up Next: More About Natalie!