Aug 27, 2013|
Cam and Aileen are the parents of Avalanna Routh, who passed away from a rare brain tumor last September. She was diagnosed at 9 months old and underwent many surgeries and treatments. Avalanna was known as “Mrs. Bieber” and got to meet Justin Bieber and attended his concert. Cam and Aileen remain dedicated to raising awareness about ATRT and funding research. Dr. Roberts studies ATRT and is working on potential treatments of this aggressive cancer.
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Roger and I don't agree on a lot I think we agree on this the worst part of this annual exercise which by the way we love to do and as we said is the most important to broadcast days of the entire year. But the worst part of this annual exercises is losing a good friend. The best part of this annual exercise is making those good friends that I consider family and Ruth. Just that and alongside doctor Charles Charles Roberts as well welcome good to see you again. You I was gonna pay my nails him but I don't think that make it through I couldn't make I've got to college -- you do. Number of those if you don't know probably many -- -- Are aware but that a candidate leader of the parents of late great all -- And doctor Roberts was her doctor as well -- just just in terms of jumping off. Point doctor HT. RT what is that in layman's terms. It's a very aggressive cancer that strikes in the brains of babies and toddlers so it hits kids but you know just as they're getting going in life. And unfortunately it's one of the cancers that we have extreme difficulty treating and curing and we're not successful very often and need to do better and how many kids get and each year. It's a rare cancer there's probably about thirty to fifty in the United States each year -- that it get this cancer and because of that slips who detract us from your critics often slips through the track. Slips of the cracks. Except for wonderful people like -- now really. Begun to back to us as we focus on this. To bring new treatments to his two kids with this disease. It's true that I mean no one even heard of this around here I didn't and we did did this for years for -- we've met Avalon are now AT&T is is. In the forefront we know what a problem and as we know how difficult it is to treat to cure and as like curia. -- money into and the good fight. Avalon and got us started and it was absolutely. We're very proud of her legacy that she has brought so much awareness to HU -- -- globally. And funds -- so you know we do a lot of fundamentally -- foundation and and we're so grateful to the Jimmy Fund that's earlier today because without them we wouldn't have been blessed with. Almost seven years with them. I tell people this all the time if you wanna know what that we know that doctor -- Roberts what he does sort kind of we know the search is what they do that the but went to understand the Jimmy Fund experienced the clinic experience. You have to here's the story about problem who got married at poll -- 5455. She married Justin Bieber of course that one knows that. -- associated it was a day as a day in the clinic and people were feeling now maybe struggling with the treatment. And Lisa and her crew earned her new cast of characters said. Let's do this let's let's hold the winning have a wedding and they didn't they know gut music they've gotten physically Clay Buchholz Tim Wakefield replica. Buckles -- got -- -- at him with them and put Justin beavers face on which one but we feel. Well on buckles what we wanna get it right and then head music cake balloons. Wedding singer. And and. Headlines now happy. Which is key absolutely. Key to getting through treatment and having these fine experiences. That. -- grosans Jimmy Fund clinic right here and because of them you met he met the -- and you met your son in law. He's that good is he still easily and not just we just did another fund raiser in July. And meet Justin Bieber fund raiser for the foundation and they raise 26000. Hits on on the road just wanted to. Meet Justin and whoever is the most got to meet Justin and we did and we while Italian -- so he's still he's still act that he really good supportive it RT. How does that work when you first got together and you've got the call from his guy and said come on now in New York don't tell anyone. Pretty much it was pretty quick and that you kept in touch he can make it bigger global it was like you who were in the was grinding and a lot of drugs I think have a lot of things people get that. I got I was gonna ask you about things you've said that you're blessed to have for seven years in your life to it if you come to terms or grass. How how. Her outreach. Has affected so many people as positively impacted people mean. I just couple of idiots like Jerry and he would talk like worldwide people are important even just mean Bieber but people who now have awareness of of what it is she had. He touched a lot of people. And that's what's really important it's you know Justin this was a moment in apps like then and they continue to support our foundation. Am but I think it really is about creating awareness of its purity and letting. And famine globally known that there is some sort of treatment out there and we -- very. Think and we feel very blessed that we are living in Boston and we were able to. Go to dinner I haven't the Jimmy Fund and because we got six more years because of that and that that. That's amazing that's the main -- and Avalon legacy you know without -- being famous and Latin and it really is about the awareness that you created and the funds that. She and -- and charity I worked together and we continue to generate in Avalon -- name. Are are you one of those people say things happen for a reason and as bad as this was as painful it was a loving parents that there was there is something good to come out of this. -- Honest answer now and we would we want -- Avalon or if we miss out on every minute of every day and but we are going through our grief and ever even think we went through treatment -- and very. Great -- for having Avalon and now lives and I know she's directing us. And to continue to create awareness and continue to find a cure to other pants down to south. Doctor Roberts tell us why it is so expensive. Why it costs so much because what we're talking about today is a direct correlation between money raised research done cures -- life saved. It's expensive because it's it's actually quite a bit harder than rocket science he's much more. Complex than than rocket science it's actually pretty straight for a little bit of physics to send somebody to the moon. But actually understanding cancer cells which are -- cells in our bodies but only very slightly different they've got one simple change. It's very difficult to come up with a drug that will go after and just hit those cells. Number with the TRT now and actually from support. From your training camp. We've been able to figure out what is actually wrong in these cells and are now in development got a first. Sort of front line clinical trial it's just opened I am and we're working to go after more definitive there. -- an -- and I said earlier on good for at least one or two sophomore questions per hour and so this might you want the 7 o'clock hour. Is -- competition. Among the researchers in terms of what you project is you're working on vs what doctor prompting Mike you working on is -- is they're sort of like this intramural competition within the research. Laps at the Dana Farber. I wouldn't say it was in the labs there is both collaboration and competition in a good way. I mean it's what what drives. Advancements is people trying to go forward in some as we find something we share -- it with others and then we drive forward. And having people like doctor Compton and others around you is just fantastic because they bring new ideas to us new perspectives. And it really is what is the magic of Dana Farber. Is to bring together so many outstanding researchers on the one -- so we can hope is that there's -- support personnel were machinery is that robots as it is it computers were to just hiring the best people. The best people are expensive and it's a big portion of the cost but the newest technologies of being able to look deep into -- cancer cell and understand exactly what's going on quite expensive as well. And so those two things really come together. And drive cost that. In the end when he sees it the the usual survival for AT RT is about seven months and to have. Around for six years and you know some things went right but not enough those of the of the things that drive us forward and we want to do better. I was gonna say you the diagnosis. Was she was one correct. Campbell was level on the -- nine months nine months almost one I want to thank you. Around. We've -- forever but. I think this past. Average me hear it right. -- With -- for almost almost threw some birthday and that was why. I mean. Guys like. Charlie yes you got a great fantastic team and it and Dana -- and Jimmy Fund and now offered doctors who are investors still still touches on her doctors. I was Avalon she's a strong and you know got us through it. And then you know I think it's a whole visit to Tunisia. That approach is that term use a lot restroom Charlayne. Themselves Susan. Everybody and she was diagnosed she didn't know what was going on that you know not while now nine months because -- did -- we were very you know she was -- -- very up front whether about them you know about going to the hospital and treatments and cancer you know what actually was able understands the concepts. To it and relive and understand strategy search but -- did she know a lot of what was happening. Speaking of Charlie I mean I said this -- we talked a lot of doctors researches and I don't think any of them is quite is connected to his patient I mean a lot of my -- Charlie is stand them up in front of how many people. Couple thousand at the funeral in the world and eulogy -- doctors do that for patients they lose. Apparently. I don't know I'm guessing not many. The teacher and law and medical school. It was to me it was an incredible privilege I mean. I Avalon have brought light to two. Her parents she brought incredible. Light to the Jimmy Fund and to her -- -- to me it's. It was a privilege. You did a great job not as good as these two I told you when he got here when you stepped up. On the altar passage in -- and -- Melissa there's no way. But they did together and they had one might just like now yeah. And I said no way you either you make it through two minutes and you did and it was an amazing. Performance and an amazing tribute and don't forget would you say he says. Is that -- I do it all over again. ITunes. Of whatever the outcome I would choose my Avalon now over and over again and and you could be the most among the most. Renowned Jimmy -- patient. Operational. Around most inspirational is definitely boast that famous if you really wanted initially inspiration now and I think. You know as much as we shared what was going on with her. And we really did enjoy every moment with them and we packed as many trips and he did as many fun things as we possibly. Could do and I'm really glad we did that that gives there was never a dull moment now now it was I was KS and -- -- Dallas. We laughed everything go to me and I am I'm very grateful for that I'm very thankful that. Have Linehan. Didn't. She didn't miss out on anything and you know she is the typical crazy six Euro. Dan -- with you know. One of her her chemotherapy -- her prize she wanted she got a lot of prizes. Very reward oriented like me but no I see a lot of prizes of one of the list please can have a FaceBook page at 550 she wanted to think that. And that is directing a lot of fun -- joy and she inspired us and to keep going and she continues to inspire us. What was her happier days the wedding at the Jimmy Fund clinic or meeting -- in New York I assume the latter. I don't I don't know maybe the wedding really. You love she loved the wedding and I think meeting Justin rise. And she loves New York a lot of -- I thought Jesus loved everything about New York -- -- -- -- being in new York and and then meeting just endless and it's all very excited. What game that you beat him that was to Candy Land can double the west yeah she took great pride in saying that -- be -- and yeah and I think he's never really Aniston's celebrity so it was someone who wanted to play in with her eyes I think that's that's the start that friendship with Justin -- you didn't just walk in and things. She walked in and start boss him around and yes sat down play -- game just likes to play game you a lot of it would. Understand celebrity -- she was the biggest celebrity. In an old mill city of Boston that that for awhile there it's there account and you know we loved her and I should have painted my nails as the first day she showed up even though is that among the pitcher nails. And we didn't live on the air and tomorrow you should immediately and will she manage your own. These -- up in the film and an -- I didn't actually went in there and had she did it again. Couple years after that but. I don't know I don't wanna give anyone nightmares and have to look at my nails when mail -- -- have more good at this important ones the crystal didn't. We'd like to give you the opportunity as we have other parents to to have our listeners and our viewers hear from parents who have gone through this nightmare who have dealt with this. To put the call out for money in research money and donations here today if we can do it until we're blue in the face. But he coming from somebody like you when your family it means a lot more so you would say one. I would say I would never thought that I would find myself in this situation that we found themselves and I would. Never have thought that I had had a beautiful nine month old little girl who was perfect and evaluate suddenly. Being diagnosed with a fatal cancer fatal brain cancer. And if there had been resurgent funding six years ago when we started we would be a very different place now. So that that not -- you bet that not be your family member let's get. Ahead of this now before it is your family there is diagnosed. And and we can make such a difference. -- check as Charlie said technology is expensive the best people are expensive but we can make -- and that so and donate it's. What you need to do and and it gives. People like us. Hope that other children won't suffer and it has more than all the donations in the past years to give us six beautiful -- with our daughter and -- that we're. Completely blessed in completely thankful and it's because you've donated so donate again and -- don't later use them to get on it at least to say get. I'd like about it and and -- -- on it like environment -- don't -- -- one beautifully that Cam -- Charlie good to see. Thanks for coming to Youngstown that 8777381234. I couldn't say it any more concisely could say it any more passionately -- -- -- -- 74000. 423. Dollars a long way to go. Both in terms of donations and in terms of hours -- watching and listening to the WEEI nest and Jimmy Fund radio telethon. Live from Fenway Park.