OMF - Austin Jones, 9, Burkitt lymphoma post-transplant lymphoproliferative disease (PTLD – a post-transplant blood cancer),Northborough, with his parents Ben and Cortney and siblings Emma, 8, and Henry, 3 8-16-17

WEEI/NESN Jimmy Fund Radio-Telethon
Wednesday, August 16th

Austin was diagnosed with Burkitt lymphoma PTLD in April 2017. This is a rare, aggressive form of Burkitt lymphoma which results from the immunosuppression that is required following an organ transplant. In 2011, when Austin was 3 years old, he had a severe E.coli complication called hemolytic uremic syndrome which led to kidney failure, so he underwent a kidney transplant. Austin recovered from the successful transplant and had been doing well for a few years, but in April 2017, he began to complain of pain from urinating. The pain was so severe he collapsed at school. Austin’s parents, Ben and Cortney, rushed him to the hospital and insisted that he have scans done – the scans revealed a baseball-sized mass near his bladder and another mass in his liver. Further testing and a biopsy determined that Austin had developed Burkitt lymphoma PTLD as result of his earlier liver transplant. Austin’s family was moving from LA to Boston at the same time he was diagnosed, so they decided to pursue treatment at Dana-Farber. Austin then had 4 rounds of intense chemotherapy, including 8 lumbar punctures, and had to be hospitalized for each round. Between the beginning of May through the first week of July, he spent more than 50 days in the hospital – but Austin just completed treatment. Cortney says that their family is very grateful for the Dana-Farber treatment team’s swift, smart and strategic treatment plan for Austin. They couldn’t imagine a better place for him to be treated than Dana-Farber, which is one of the only hospitals with PTLD specialists. Austin attends Lincoln Street Elementary and enjoys Pokémon, baseball, and Minecraft. Austin recently met Brock Holt during Brock’s visit to the Jimmy Fund Clinic –they sent a selfie to Dustin Pedroia, Austin’s favorite Red Sox player! His family includes his mom Cortney, dad Ben, sister Emma, 9, and brother Henry, 3.

00:07:48

Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

This next gentleman we know mrs. Austin's he's nine years old and we spent some. Jet. That was the funniest of the group the big. Icicle. Equity group and the favorite memory and a funny looking yeah. Cost. I don't know I think honestly in Disney can look like Wally. Nearly letters get a little bit like a little bit we thought of all the time it's okay. Long it was a human beings can be taking over the show ten minutes. A better Courtney. Austin's parents and who's eight years old this year as well so I feel body. Good that's good to now now. On what will last that bin he's got Berkett lymphoma yelling what that is so out. And Austin was three and a half the addict I kidney transplant. And as a complication of medications on from the transplant. He ended up getting some Nicol PTO people's transplant for liver disease and it. Type of that is Berkett not part of them Obama. Which is. You can get other ways but that's what you got so you solving one thing and made another mess that is unbelievable. So what was the treatment woody what has he gone through so he's gone through about three months of intensive chemo. And it's been incredibly effective it was quite a group experience. We'll touch and go but he got through it either is amazing great attitude all went through it and we we couldn't be happier with the outcome to couple weeks ago found out that it. Correction that's awesome Austin what's it like for you go in order clinic. Down. It feels normal to. Eat he would you like about it. There is a lot of people like. So. It's. Are you like yeah the millionaire they're now you've pretty. Quite how it's done right this is where this is this is Lisa this is where users now. And I got like everybody is a lot of people which your favorite thing to do over the com. Well you. Know. Just when he's very. And I think yeah. Involvement. And. I know about it. Girl can like this that an old. You go. Social bedroom or. Like I was talking when you go for a kidney transplant which if that's got to be stressful. Ages excited greatly increase the effect and continue for three year old boy right now. You come out of that how to doctors how does that whole work with bars when you guys know that as a former cancer because. Of delivered. But so first off got out Austin's uncle Jacob who gave them with kidney. About seven years ago our. So. Yeah at the kidney transplant was an absolute miracle I mean and it's on its own right. The light before the kidney on dialysis was not a good life. But after it was things change you it would go to school. Haven't largely normal life he's a lot of baseball team on basketball team loves sports he loved being active. Very good school. And then one day at school he he kind of claps over pain we thought it might have been maybe kidney stones maybe it was. On the market he's still got an owner and after won the last two weeks and our foot off the answer Burton when he was going about the room so we go and we're actually living in LA at the time. Climb back and forth commuting from LA to Boston movement over here. Friday afternoon he collapses. Courtney says we need an answer Dawkins and there that can wait till Monday Tuesday they know my husband get on a plane on Monday we need to know now. And so we rushed him and got an ultrasound that sounded like a baseball sized tumor inside of his stomach. We get went to UCLA hours treated for kidney transplant. Sat down that hey. Look what what's what's going on doctors and they did a cat scanned. Our CT scans and they've identified the tumors likely cancers. They gave us two options this that we do start treatment today hear it in Los Angeles. Or are we know your yours and positioning and a couple months the Boston. Or you get on a plane tomorrow and fly to Boston poignant in it and there or whether. You choose but and I said. It's tomorrow like figuratively like in a couple days like we have some time he has arrangement if you're not on a plane tomorrow or started to davis' a very serious situation. So we got on a plane in my life and and Austin we left them on and our other child Henry. With my brother. And we flew out here earliest start figure it out in the people. The Jimmie or the Boston children's Jimmy Fund. I mean it it took care of us we knew nobody we knew nothing leaders became Aron and we came out of work rarely is the best place to be at it there. You already in the process. But moving out to Boston or did not yet decided to sort of made you decide they were. We were we were flying I was flying back and forth we knew were gonna come toward the end of may. This is ending April and we just accelerated all that. Came to the right place. And it couldn't agree more they're wonderful America and treatment and and the way they deal with the kids and I think they seemed to know that the kids are gonna command and sometimes you're gonna be a little bit anxious but they always anticipate. What's going to happen it's amazing plus. There really connect I can't say when we got there we were scared to death I mean. He thirty gallons kidneys we know that makes everything more complicated more challenging with what treatments and can't yet. And there's a nurse practitioner that came and then Courtney was worrying about. They don't look like Sweden do we go to school can plan on that below what we kind of how we look towards the future and she pulled him aside her name is Courtney he said. Austin's going to school in the fall. And it's absolute confidence that we had no column we are scared to death and as he came and rock salt and we're gonna get him better you're in the right place we know where bill. Yeah part of it too is that you. Are the trust if you just sort of like you say this to everybody who argued just trying to get my hopes up you know what you know that. The experiences there they are the best and if they see something and then you can believe that that matters a lot and they don't look back to. And they don't tell he thinks they're better traction late the they try their best because they don't acts taxi their words right in our gift also. And so I asked him early to how to create got Sony first came here. Because. The protocol he acts beyond strictly. Toxic to me. And so really keep this 5050 chance. And soul. He's the only kid that's ever had a kidney transplant here in the pirate that has been able to go through this particular protocol and make elderly through. And because of that because they're so aggressive with how they treat cancers that he has and 95% chance of having a fight here at entry outlook. Which is really great. Industry and that he's doing great and get a handle on rhetoric that. Hey out if it's great to Amman body it's great seeing him like that like they hold out for today. Thanks for coming and sharing your story it's a great story and we're so happy for you guys you two of them I bet you didn't you didn't electable non conference on talkative. Than against an early look at this. I. I think she'll have a everybody thinks I'm not guys gradualist.
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