Episode 1: Glioblastoma

The first episode in this series tells the story of my grandfather's brain cancer and the dangerous experimental treatment done on him as a child. 

Transcript

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This podcast begins as many podcasts do! With a secret. 

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As a disclaimer. This story contains details about cruel and dangerous experiments done on third grade Children, a deadly cancer and the death of my grandfather, Ronald Rose Senior. This is the story of my discovery that a world renowned private medical research institution is responsible for exposing countless young Children, to harmful levels of radiation and then covering it up. One of those Children was my grandfather.

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My name's Lynne Rose, and my husband was Ronald Rose. We met, um, in Australia 30 years ago. And, um, when we were both working for the same company, Uh, we married after a fairly quick courtship, only three months on end, which seems a bit reckless. But we both decided at the time well, he was He was any fifties. I was in my early forties. Uh, what the heck? We were just gonna do it. If it worked, it worked. And if it didn't, there were remedies. So, uh, but it worked.

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This story begins in mid May of 2018 when Lynn and my grandfather were on one of their semi regular trips to Australia to visit Lynn's family

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So we had been in Australia and he always was very particular about knowing what was going to happen when it was going home there. He always wanted a schedule. But, you know, I put that down to the fact that he was an engineer on. You know, engineers have project schedules and they like to keep to, So it was pretty interest. It was pretty irritated, but that's what you like, you know? So he seemed to be a little bit more particular about that while we were here in Australia that time, Um, he left to come back to America three weeks before May. And, um e uh, he got himself home. I did have to call him shortly before I got home to let him know that I had an accident with a friend's car. And, um in order to tell him about it, I just said to him, I'm going to tell you something. I don't want a bunch of questions and he said OK, so I told him about the accident and there were no questions which, uh, seem very art. It was on because even though I had asked you not to ask questions I knew the old Ron would have asked me what he would have wanted to know. When I got back home and he came to the airport to pick me up, I expected to find him in the lobby of the airport where he always waas. He would go pack the car, come stand there and wait for me. Well, I couldn't find it. He wasn't there. And so I kind of waited around the airport, wandered around up to the back, check out now he wasn't there, wandered back. And this was it was getting late now when I called home and he wasn't there. And finally I did get a call across town. I, you know, asking Lynn Rose. You know, your husband's waiting for you outside baggage checker. Check out. So and I had been out. I've been outside looking for him, looking for him wasn't there, wasn't there, and it would finally showed up there about probably 45 minutes after I would normally have expected him. Way drove home and it seemed fine. Um, on then from then on, um, things got a little bit weird. I guess the really big thing that worried me the most was the day he was sitting in the living room and all of a suddenly got up and started looking for something. He was frantic. It was, you know, buildings office. He was outed my quilting room. He went the bedroom. He was outside. What are you looking for wrong? He said, I'm looking for that green hose. What green hose He's said that, Marinos. He said, we've just had it in here with just had it in me. It would be messing around with this. Green knows. Where is it? Well, so I was thinking, Well, I'm not really sure what we're looking for you. But I started looking for the great nose thinking it was something that you had when I wasn't there. But I had been there all that day, uh, and then finally realized, you know, well, there is the worst. Nobody knows it was something that was happening in his head. So But I did go out on the front part and I said, Well, there's a hose here. He said, That's a black holes. That's not those. So Okay, I guess it was that night I really started to get concerned about it. And I said to him, I think we need to go to the E r. And so this must have been about June. The second meant no, maybe June the first. I think we need to go to the because something's not quite right on, he said. No, the other one with the problem. I'm fine. There's nothing wrong with May. I'm fine. So, um, I think all the next day seemed like he wasn't quite quite right. We got into bed on the Saturday evening and I said, Really, I think we need to go to the e r Ron, I'm really worried about you They said, Well, he says, I still think it's your problem But he said, If you feel that way, we'll talk about it in the morning. This was something. So Sunday I got up when I was, you know, doing the housework, uh, cleaning up and all of that. And I said to him, Are we? We saw we were going to go to the ER and he said, Okay, you said, But you know, I still think it's your problem, but I'll go if it'll set your mind at rest up. Got him in the car straight away because I didn't want him having certain parts about it. Took him over there. They did it. M r I immediately and, um, get the doctor came back and stood in the hallway and quite boldly said, um, he has a huge blast on the spray. It's, uh it's a glioblastoma.

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Shortly after they found the tumor, Lynn called my mom and my mom called me. She told me what the doctors had found, and she asked me if I would go with her to North Carolina the next day. Monday, June 4th, we found Lin in the waiting room of the hospital in Asheville. She was wearing pop pubs purple L s U sweatshirt, and we fed her the cheese and crackers we'd brought all the way from Baltimore because she hadn't eaten since the night before. We waited for my grandfather to get out of surgery, where the doctors were performing a biopsy to confirm their original suspicion. Glioblastoma.

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I see. He didn't really realize the the magnitude. I don't think all the time you get he was joking in the hospital. I mean, a lot of the time we didn't know whether he was confused or whether he was, you know, they'd ask him a question and they give him completely off the ball. I'm so way were yet as we

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got there on Monday and I guess maybe on Tuesday I remember him, the nurse asking him like, So where are we? And he said, Oh, we're in Ellicott City, Maryland, and we were all sitting there looking at him. And so it wasn't clear if he was actually confused because we were there and he thought because we were there, Maybe he was also in Maryland. Um, or if he was just messing with the nurse who was trying to ask him questions, you know, which I mean is all the more evidence of the fact that he wasn't quite grasping the magnitude of what was going on, you know?

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And he never did. Actually Kelly he never did grasp it. He never did grasp about it.

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within those first few days they had been told that the tumor was inoperable. The best case scenario was to use radiation treatment to shrink the tumor just enough to reduce the swelling in his brain to give him a little bit more mental clarity. That summer of 2018 flew by as Lynn grappled with her new reality, My mom traveling back and forth between Baltimore in North Carolina to be with her father in late August of 2018. This story takes a turn. When Lynn remember something that my grandfather told her 30 years before.

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Of course, over the over the years, he had told me a little bit about this life in Baltimore. I grew up in Baltimore City, right? I the the baseball that the baseball field, they're

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here. She means the old Memorial Stadium, which was demolished in 2002.

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Yeah, on Dhe tells me that he and his brother used to sneak in that to watch the games, and he had all the baseball parts and everything that he feels like. His mother finally threw out at some point, but he said he probably had a really good collection of um, it's, um, after all of these years, going in their meeting up with the players. Um, he doesn't remember his father chasing him all the way around the stadium. One time when he had done something he shouldn't have done on. He finally came back home after that really sad and ended up in the loft in the garage. I think you spent his night in there away from the wrath of his father these years, when he was growing up, they suffered a lot from he did have here a glass. He suffered a lips from hearing loss, and he also had a lot of allergies. And so he would tell me That's, um he would spend most of these evenings in the lobby of the movie theater because that was the only place where they had central heating air conditioning, which, you know, helped him with his out with these allergies and all of that kind of thing. So, yes, I had asked him at some point, Well, you know what what treatment wants that for? You know, for this, for all of these allergies in the air, in lost all of that. And that's what he said. Well, this stuff really radium rods up my nose, and it was just like an off the cuff. Remark it that yet

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you heard that right? Radium rods, as in steel rods tipped with the chemical element discovered in 18 98 I, Marie Curie and her husband, Pierre Radium as in atomic number 88 radium, as in all isotopes, are radioactive radium. My mother first told me about this second hand after hearing about it on one of her visits to North Carolina on August 27th 2018. At 1 30 in the afternoon, my mom sent me the following Facebook message. Also one thing I forgot to tell you about Dad that I found out when we were down there. He had really bad allergies when he was a kid, and they used to send him to the movies all day in the summer because it was one of the only places with a C. While they also put radium rods of his nose as treatment radiation up his nose exclamation point. Now, at the time, I was a full time graduate student with multiple positions as a graduate researcher. So when I first heard about this, I immediately began digging, and what I found initially was a 1997 Baltimore Sun article called Old Cure. New Ills Million's receive nasal radium therapy in 19 forties fifties and sixties. I sent my mom a message. I said OMG, I am reading about this right now. Nay, So ferrin Jal radium irradiation. Apparently in the nineties, the V A tried to track down veterans. They used the treatment on for increased risk of cancer pioneered by Johns Hopkins physicians. I sent her the link and said, That is wild. Was he being treated at Hopkins? It would make sense based on where he was living as a kid. Before she could respond, I sent her another quote from the article. It says The Advisory Committee on Human Radiation Experiments, a national panel that published an extensive report in late 1995 on radiation experiments, estimated the risks of cancers to the brain, head and neck from nasal radiation treatments as 4.35 1000 62% more than normal and more than for any of the 4000 various radiation experiments I followed up and said There's also mention often experiment on 582 elementary school students in 1948 he would have been in third grade, then, right? It specifies 580 to third graders. The records of that experiment are lost. My mom wrote back. Yes, he was nine years old, so would have been 1/3 grader. I'm sending this article toe Lynn. I kept digging. I came across an entry on the website for the Alliance for Human Research Protection. The title of the entry is 1948 through 19 seventies nasal radium irradiation and her eye of Children at Johns Hopkins. I sent my Mom the following quote from the article. The President's Advisory Committee on Human Radiation Experiments, extrapolating from the known effects of radiation doses, calculated that Children who received nasal radiation based a lifetime risk of brain cancer of 4.35 cases per 1000 population, 62% higher than normal. The rate of all cancers of the head and neck caused by the treatment could be twice that high, according to the committee she wrote back. Lynn wants to sue Tune in to the next episode to find out how this story unfolds and is continuing to unfold as we speak. The theme music for this episode is the song Mama Said by Cat Clyde