DHK - Heather and Robert Jucha, parents of the late Sean Jucha, gliomatosis cerebri, a rare brain cancer, East Greenbush, NY 8-16-17

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

Sean was a healthy and robust boy until the summer he turned ten; that was when Sean’s battle with gliomatosis cerebri began. Sean was diagnosed with a malignant brain tumor after being admitted into the hospital for seizures during a family vacation in Rhode Island. Unlike most solid tumors, this rare tumor grows like a spider web. The tumor’s rarity, presentation and cancerous threads made an accurate and expedient diagnosis challenging for Sean’s medical team. Dr. Peter Manley of Dana-Farber advised the Jucha family they would treat Sean very aggressively. Sean responded well to the treatment with no disease progression for almost 2 years. At just about the 2-year mark, Sean developed headaches again and his next scan showed the disease was progressing. Dr. Manley then tried "targeted therapy" for Sean's tumor. Unfortunately, this did not work and Sean's tumor continued to progress. Dr. Manley still did not give up and Sean started radiation and chemotherapy again. Sean responded to this treatment and he continued to go to school, play sports and live a normal life. Sean never let his disease get him down, nor did he ever complain. Several months later, Sean began having new symptoms of dizziness and trouble walking.  A new scan showed Sean had a new tumor in his cerebellum which was affecting all his motor skills. He started falling frequently at school. Again, Dr. Manley didn't give up on Sean – he pulled out all the stops and tried to enroll him in multiple clinical trials and was able to set him up once again with additional radiation to his cerebellum. Dr. Manley was very honest with the family and informed them this was only palliative treatment, but it was something he pursued so their family could continue to have time with their precious son. Sean passed away on August 28, 2016, 3 years after his diagnosis. Sean was a huge Red Sox fan and attended many games. He has a younger brother Ryan.


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

And joining us here at at our set is Heather and Robert you hop it's not spelled that way trust me it's renounced it largest trust me on this. Heather and and Robert you hop are from out east ring bush New York. And you're the parents of Shawn you Hough who unfortunately left us a little almost a year ago at this point. Let's talk about Sean for a moment then am what it was that that he fought so valiantly. So Sean. Was diagnosed at age of ten with a very rare form offering cancer Coakley in the show's history. What that is is it's a very rare form of cancer that in the trees through out the brain it's not a solid math. So it's very difficult to treat. He was diagnosed at Dana Farber. Comic actor Peter manly hand. When he was diagnosed days pulled us Dexter Manley told us that there was. Not only no cure for this particular type of humor. But there was no grip no real effective treatments for either. Which is of course very devastating to hear as as parents that you really have no options. He told us despite that they humid treat him very aggressively which which he dead and on Sean. In two or three years. Very aggressive treatments and he went to keep heat chemotherapy. Three rounds of radiation. And he had a very good quality of life up until the last couple months when he left us. I'm what's so bill it will this tumor was so horrific so at their very and it robbed them of his ability to walk it robbed him of his abilities stark. It robbed it of its ability to swallow and he he was basically just on a vegetable for the very end of his life and it was. Extremely. If it changed us forever. To watch her arson go through that and to have to live through that. Which is why we made it our mission to raise awareness to this or that humor as well as the Jimmy Fund and the great work that day doctors getting far perhaps done. And did for us I credit doctor Meehan me immensely for giving us a lot of extra time with our son which is really all we could have asked for. On so we've been very vigilant in the last. This year and in raising funds and we've raised over a 100000 dollars and it says dean of our friend Jimmy Fund so. That's right are here today and we really appreciate you having us. Here's. While I gotta say at first thought older thank you both Heather and Robert for being here. For being here today. After I after everything that you've been through. And in is clear that. You guys both agree that Harry your work is not done you have a mission. Just maybe that the mission that you thought great you know five years ago ten years ago but you have a mission so thank you very much. And that's what. You get. A sense from you. From both of you your family vacation in Rhode Island is that when you found out yet so I mean what was that like you here on this vacation and in what what what. Kicked you out that something wasn't quite right and just just walk us through that. So will we are on a family vacation and in Rhode Island visiting family and Sean was fine up until that point in normal healthy robust exploit. He would go on to that that night and he woke up having a grand Mal seizure enough was the first indication that something was wrong. So who we rushed him to Hasbro children's hospitals. They have a hard time getting him is seizure under control and I immediately transferred to Boston Children's Hospital. Which is where Lehman. The terrific team here. Hitting a farmer atlas. You're your life can change a second and that was a second for us and our lives changed forever now that Clinton. Sean as the younger brother Ryan and I can't even imagine what he is gone through house seat that. He's been. Pretty good lately you know it's a definite change he talks to his brother all the time. He. Brings up what she wanted what do he tries to be like his brother. Brian a lot of second graders will be writing you know when you have to rate things will write about rainbows then and different things on our. Ryan will write about Sean and about brain tumors and he will drop pictures of a shot at an IV pole or you know. So is so it's definitely changed it's changed a solace of Stanley. EU can never truly understand the impact. That I'm having having a sick child can have on a family because it it it changes things forever. And that's and that's why we're here today and why are raising money because we knew we want to make people understand. There's no there's no funding for pediatric cancer and in it it in general there's even last. For the type of tumor that Sean had an and that's why it's so important. That that people understand that and help us raise money through private funds so it's a fun this type every search so that. Other families don't have to do it go through what we've. 100000 dollars or run the galleries that kind of event. We. That turns it. Oh. Place. Well there's friends from school that is. From other school districts in. There's proximate to its. He gave the basketball. Swimming and got all those things play. I. I know I had. Yeah. There's been we've had Hughes we we are very fortunately. Of community support and they really rally behind us and really helped support. And raise money had a lot. Community support and various different events at a five K in the golf tournament coming up on August 7. An east in this area. We packed comedy night we've had. Mentioned. We've outsourced. So. It's an injury and there it is it I know. I know Roberts cut days he shirt on with the heat Red Sox logo which is nice but that's kind of the connection between the EUR family. And the Red Sox and and they hosted you guys and show on. And Sean got an opportunity to spend a little bit of time with David Ortiz defeated if he loved it he said the dugout with them. He spoke to buy to the things. He spoke. Sorry but hey take it I'm but he'd vote to liberty as it was this one is number one players. That we have a picture over your shoulder. It took us about two and a half years if that for a science and they got it out address that a lesson that defense and ask yes or start July 3. Colin. Birch. Where is over so that he would he CN. Facility and Sean that was his last scheme that he's that if it. He births baseball bat again to have. Side by deeper teeth. And at that and being. Brit players baseball players slot and the rookies will look in his vehicle softer on. Cut out it's a sense bespoke back in the picture. You know. That was that was really his last outing as a lefty came here. Less than if you left the house. What. What did what did Sean say about meeting David Ortiz in his left pilot like it was the best what what stood out to. If he just he was he's better Red Sox fan since he is the agent story. And so he he he knows he knew every player but David Ortiz was always his favorite and then he he just loved him and it was just the highlight of those flights even to the in his presence and and enjoy his company in the back post on so it was there it was that your on their threats accident. Really helped us get through this you know shots and a lot of time. And friends TV watching their attacks throughout its ominous. If they they've been very. And in what we talked with doctors and nurses earlier over the over the two days and they say when they don't just treat the disease to treat. The entire the entire person in the entire families aren't thinking about. Your son and how we have rights and draws about his brother. What have professional said in terms of it is yet okayed it and that this act that is that healing him it would what do they say about that whole process. So if so they say that that's it that's his way of expressing himself and keeping his memory alive and trying to understand you know he's at a very Della cage where. You know he's only seven he doesn't fully understand what happened but the way he expresses himself in when he writes. When he draws pictures when he talks will be driving chemistry and healthy cancer symbol and he will and it Paulette immediately that the cancer some associate commercials on TV he's very in tune to. Two to all of that and and he says he's going to be a doctor and changed her teacher brings him effects. Well the bullet went through it well. Well both the school's response because that's got to be some that haven't yet but close and it's school and then you lose the kid it's just unbelievably sad woes that reform. Oh they they've been extremely supportive as well tendency. And they have a bench they have put have been sent in his honor. Dean now has books donated. I'll in his honor at the library there sports books. It's stuff. That are there in his honor his elementary school planet history. You know they've been extremely supportive and behind a 100%. Which has been nice. Robert I'm going to be honest with you. If if this were my son I would be tempted to climb in bed and pull the color covers up over my head and I don't think I could put one foot in front of the other. And you guys went out and proceeded to try to figure out a way to do good. That's pretty strong yes. We're in Risley we spoke about it that you were strong passed away from what I've spoke saying we gotta do something to find some type a cure. Possible that child or family has to go through what we went through. We thought of the 800000 or five years and sticks to start talk about well it's a long time since it's so freshen community. Let's. Creek looked closer and Stew over one year. From his passing through recent 1000 we did in ten months through its think their communities fantastic. And you know I can't speak more about. Can't we that you can either you know hide under the covers and back it up for you can you know over. You can get up and you can continue to go on for the front of the other and continue to edited. Two raise money and then do something good out of a very bad situation which is the trees that that we made and we'll continue to do so. The with a bridge too we had it there's no funding for. This that's so rare that with less book that ultimately he says there's 39 cases in United States that this type of thing to. So there is no federal funding there's a state funding for us all there is pregnant and present donations. And we're look to reach out to confer return fund so people to certain donations were other causes loss. You know. Especially the children out there with their completeness that. They're really just don't care. You guys are remarkable people. I'm I'm so happy we get a chance to meet its anxiety guys you're state of the game right we are yes that's the ivy you won't want to waste a shy guy. That Red Sox shirt go out thank you guys very much Robert and Heather you lie it was it was an honor to meet both the.