Part I: "She never lost her smile"
“Juliana was incredible. She wasn’t afraid of anything. She was very curious, always wanting to learn. She wasn't afraid of asking tough questions to anyone she met. She was always that one person who welcomed new people in, in any environment. And she was an athlete…the fastest swimmer on the swim team, an excited bike rider and inspired runner. She was so encouraging of everyone else, too. She loved animals, and had a special bond with her little dog, Fred. She loved having friends and just helping people. She was more courageous than I ever will be.
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Juliana knew she had a brain cancer called DIPG (diffuse intrinsic pontine glioma). But she did not know how severe it was and that, likely, she did not have much time with us. We knew, but I just never had the courage to tell her. Some parents do tell their children, and that’s their choice. I just did not have the guts to do that. I kept telling myself the end is not near, even when I knew it was.
One time, Juliana overheard a conversation in the hospital. She later asked Tanja, “Mom, what does long-term survival mean?” We were furious at the carelessness of this talk, with Tanja telling the clinical staff to never bring up any comments regarding Juliana’s condition in front of her again.
In the weeks following radiotherapy and with her symptoms improving, Juliana regained some of her strength. She somewhat became aware about her physical limitations and was always tuned in to what people might be saying about her. She knew that she had what she would call “her special condition.” She knew she was not herself anymore. She knew she couldn’t do the things she loved to do. Then, the time came in August of that year (2018) when she could no longer attend school or play with her friends in the school playground. She loved riding bikes, but she could barely walk.
When we’d travel for treatment, people would look at Juliana, approach us, and say how beautiful she was. And Juliana would say to us, “Should I tell them I’m special? That I have a brain tumor?” We’d say, “Juliana, you can tell them whatever you want.” Sometimes she’d disclose it to people, and you’d just see the tears running down their faces. This happened every time we had to go somewhere for treatment, with people at waiting rooms, walking by at airport lobbies, with flight attendants, and people at baggage claims.
“She died after a year-long battle, just shy of 11 years old”
Juliana was diagnosed in February of 2018, when she was nine years old. DIPG is a terminal brain tumor with no treatment options. And it’s inoperable. She died after a year-long battle. She was just shy of 11 years old. By the end of it, she had no control over her muscles. She couldn’t walk. She could barely stand. DIPG took everything away from her, little by little, but not her cognitive abilities. Even when she could no longer speak, she communicated with her face. We knew what she meant just by looking at her eyes. She never lost her smile.
Following a DIPG diagnosis, the average survival is a meager 10 months. Some will live a little longer, some a little less. We don't fully understand the reasons for the difference in survival. For some, it’s really short (just weeks), while others last two years or longer. Such differences are linked to how the tumor behaves, the inflammatory process triggered by the tumor cells dying, and how the individual immune system responds to the aggression put forth by the tumor itself. Also, today there are new drugs targeting various pathways associated with tumor cell survival, either alone or in combination therapy, and are assisting in promoting longer patient survival. The mechanism(s) by which such drugs act is being investigated, and novel pathway associations are being identified. Hopefully, this will lead to novel targeted approaches.
The question for a parent in this situation becomes: is there a clinical trial - or something on the horizon - that may provide my child with a slightly longer living opportunity? I spent nearly 30 years as a professor and scientist in infectious and vector-borne diseases. I know how to run clinical trials, as I participated in my own human studies during my years in academia. So, when Juliana was diagnosed, we looked at various clinical trials that could extend her life.
“From my experience, it was bad from the beginning.”
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We went through a very well-known clinical center, one that advertises themselves as the best in the world. But it’s just a numbers game. You have so many people coming through the door. Obviously, the rate of success is going to be greater than if you have fewer people coming to you. They tout themselves as having a 90% survival rate. But how many of those are less severe types of cancer? What about the aggressive cases? How many of those are surviving? Different forms of cancer can lead to different outcomes, with some today having a very short survival rate due to the limited options available.
From my experience, it was bad from the beginning. Some of the clinical mandates were just ridiculous. I tried to plead with them. I said, my daughter has a debilitating disease and you’re forcing us to travel. It’s 10 hours from point to point, even for blood draws that could have been done in our hometown. Standard blood draws that, for Juliana, were painful due to lack of proper training of the pediatric cancer nursing staff, and a lackluster post-operative support from hospital staff. But they wouldn’t see it from my perspective. They’d say, “Oh, it’s only a four-hour flight.” But for us, it was two and a half hours to get to the airport, three hours waiting for the flight, the flight itself, and then more driving. For a kid who could barely move at all. And every single time we did this, Juliana got worse. But again, we had no choice. The only treatment centers were at least 3,000 miles away. We were between a rock and a hard place, right? We signed the dotted line for the clinical trial and we knew what the game was. We had no other options. We were stuck there. The drug being tested in the clinical trial, at the time, was our only hope.
Above all, the clinical team lost her tumor sample, which was supposed to be used to assess the effects of the drug involved in the clinical trial (this is done in the laboratory using DNA and RNA sequencing methods, which are fairly trivial; I spent a lifetime using these approaches in my own lab!). This tumor sample (biopsy) was a requirement to be admitted into the trial, so how could they have possibly mishandled it? It was an entire year later - and only after my wife pressured them - that they claimed to have mislabeled it and put it in the wrong freezer. So, despite everything they put Juliana through, they did not even fulfill their end of the obligation.
Following the biopsy operation, Juliana got worse. But obviously the surgeon wouldn’t admit that.
And after the surgery, they provided very little support. Juliana went into a recovery room for a couple days at the hospital, and they basically left us alone. I wrote a letter to the hospital ombudsman of the hospital (someone appointed to investigate and resolve complaints) explaining what happened. I never got a reply. I sent it to four or five people in the hospital too. No response. They couldn’t have cared less.
“It was inconceivable to me”
We had no other choice but to be there. We even had to do the 10-hour travel ordeal for a simple blood sample. And on many of those trips, the nurses couldn’t even find a vein. If you work in the pediatric ward, you have to be able to get blood from a nine-year old on the first try. But they were totally incapable. One time, they damaged Juliana’s vein. They kept punching her arm. She was in deep pain. I said enough, let’s find someone else. Eventually we found someone on a different floor who could do it. But the whole thing seemed to be just plain incompetence.
All this and no accountability. I'm not a clinician, but what I was witnessing was inconceivable to me. I said, can’t we do better? Why can’t we use telehealth for this? Certainly, we encountered people who were trying to do their best to advance the drug that had shown a lot of promise for DIPG. But there were so many missteps and a lot of miscommunications.
So that’s the type of trial my daughter went through. And I blame myself. I hope she will forgive me when I see her again.
“It leaves people hanging by a thread”
DIPG patients in particular…they don’t have time. Juliana had 53 weeks. That's it. What can you do in 53 weeks? Yet the demands they put on terminal patients regarding acceptance into clinical trials - considering the short time they may have - are unacceptable. For example, if a drug or treatment offering a better outcome suddenly becomes available, there may be a need for a washout period, in which any previous drug/treatment must be cleared before one goes into this new regimen. However, if the clinical trial isn’t working for you, you have to wait upwards of 90 days before trying something new. I can understand this for less aggressive cancers. But how can someone wait 90 days on something that’s going to kill them in six months? We don’t have 90 days. This is a life and death situation. It’s a desperate situation. It leaves people hanging by a thread. And placebo trials for rare diseases? Come on. We can do better than that.
We need to modernize clinical trials and change the paradigm with systems medicine, which is a more team-oriented, collaborative approach. We need to address outrageous drug pricing, implement tele-health, and increase funding for diseases with the most imminent threat (I share more on this in Part II of my story).
“There’s nothing worse than what we went through”
It changed my life. I walked away from my profession. I had a very successful career and a wonderful lab that I built, working with students, postdocs, and several visiting scientists. I reformulated an entire program at this university. It was well-funded. I really made it count. And I walked away. Because I just couldn't do it. I couldn't be there anymore. Now I focus on advocacy for pediatric brain tumors, clinical trials, and supporting both the DIPG Advocacy Group and the Marc Jr Foundation. The Marc Jr Foundation does great work in support of DIPG patients and their families. I am privileged to be a member of the board. I try assisting with whatever I can, particularly in terms of changing current DIPG paradigms. And there’s several medical centers I’ve spoken with who have expanded their telehealth platforms significantly, particularly the ones related to DIPG. We share ideas and brainstorm solutions together. Real change will take a long time. I won’t see it in my lifetime. But I’m committed to it.
I’m one of a handful of people in the DIPG online groups I’m in who understands medicine and biology. People will ask me questions and for advice. They’re trying to find something that will bring them hope. And I surely hope they do. But the evidence just isn’t showing it yet. So I try to position things in a way that won’t offend them. But the worst part of it all is that I have to relive my own situation every single time. Because almost every day, there’s someone dying.
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“There’s this image of a statue…it represents emptiness. This is how I feel.”
.jpg)
Grief is a rollercoaster. I’ll hear people talk about the five stages of grief. But I don’t agree with that. Because it’s not linear. Anything can happen, any time. One day you’re feeling good and the next day you don’t want to be around. And for me, most times I just don’t want to be here. I tell folks, I’m ready for my magic bus to come knocking. But yeah, people cope differently. I don't do parties anymore. I used to love drinking beer on the weekends. But never again. I totally lost interest. You need to find something to do when you’re coping. The busier you are, the more you can focus your mind on something, and the pain will give you breaks. It’s been four years and three months since Juliana passed, but the pain hasn’t given me any breaks. It still hurts. There’s this image of a statue…it represents emptiness. This is how I feel.
Getting involved is my way of coping. And cycling. I’ve always been an avid cycler, but now it really gives me breathing room and time to not think about everything. And I’ve done rides for charity, like the Colorado Courage Classic, which raises money for the local children’s hospital in Denver. I also hope to get more involved with The Morgan Adams Foundation. They are doing amazing things.
“I still sleep here often”
Every night I would come in here and read with Juliana, tell her stories. I’d often lay down with her and fall asleep. I still sleep here often.
We gave away quite a bit of her stuff. But we still need to get rid of some of her dresses and other things. Eventually if we move, we probably will. But it’s just not as easy as some people might think. Because there are stories behind everything.
This is the last pair of shoes she wore. She loved the outdoors, especially visits to Rocky Mountain National Park. And here’s the last book we read. There’s a bunch of different characters, so I’d make different voices and sounds for each. Juliana always knew what was coming when we read it. She’d look at me and just wait with anticipation. She loved it.
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Juliana loved school. And she loved just about every subject. She was really looking forward to being part of the sixth grade class. But she never made it.
Mrs. Mahindroo and Mrs. Romo, the 6th grade teachers, set up a forever desk for Juliana at school. Her picture is always there. Mrs. Mahindroo always tells the story of Juliana. And even though she only made it a month into fifth grade before her symptoms got really bad, her teacher still retired the number 9, since that was Juliana’s. Now it goes from 8 to 10. Juliana made an impact on a lot of people.
We established the Juliana Character Award at her school. It’s a fund that gives a couple hundred dollars to a fourth and fifth grade student, selected by their respective teachers, to acknowledge something they had to overcome that year. It’s been five years running now. Last year I also took a position teaching science at her school. I taught ninth grade biology. It would have been Juliana’s class. Eventually I couldn’t continue with it. But it was a nice experience. I did it on her behalf. I wanted to understand the school she loved so much.
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“I miss her every day”
Juliana knew she had this special thing called cancer, but she thought the treatment would make her better. She thought it would get rid of the tumor and give her life back, as she knew it. After she passed, my son, Felipe, shared with me that one day while they were playing in his room, Juliana asked if she was going to die. Felipe was encouraging, saying no, we’re looking for the right treatment. We’re gonna find it and you’re gonna get better.
Ultimately, options for Juliana weren’t available. But I still feel like a failure. Because of hindsight, you know? Why didn't I look at this? Why didn’t I try that? Maybe I could have looked deeper into things. And that’s the part I blame myself for.
I miss her every day. And I envy every parent who has a daughter. I just look out the window to my neighbors and I envy them. There is always a sense of “what if.” Every day there is a reason for me to not be here anymore. And I think this feeling is gonna stick with me until the day I’m no longer here.”
I hope you'll read Part II of my story, where I share more about my advocacy efforts at the federal level, why “rare” diseases aren’t actually rare but rather neglected, and the critical need to modernize clinical trials.
Here is what Juliana might have looked like today, generated through AI. Rest in peace, Juliana.
“Juliana was incredible. She wasn’t afraid of anything. She was very curious, always wanting to learn. She wasn't afraid of asking tough questions to anyone she met. She was always that one person who welcomed new people in, in any environment. And she was an athlete…the fastest swimmer on the swim team, an excited bike rider and inspired runner. She was so encouraging of everyone else, too. She loved animals, and had a special bond with her little dog, Fred. She loved having friends and just helping people. She was more courageous than I ever will be.
Juliana knew she had a brain cancer called DIPG (diffuse intrinsic pontine glioma). But she did not know how severe it was and that, likely, she did not have much time with us. We knew, but I just never had the courage to tell her. Some parents do tell their children, and that’s their choice. I just did not have the guts to do that. I kept telling myself the end is not near, even when I knew it was.
One time, Juliana overheard a conversation in the hospital. She later asked Tanja, “Mom, what does long-term survival mean?” We were furious at the carelessness of this talk, with Tanja telling the clinical staff to never bring up any comments regarding Juliana’s condition in front of her again.
In the weeks following radiotherapy and with her symptoms improving, Juliana regained some of her strength. She somewhat became aware about her physical limitations and was always tuned in to what people might be saying about her. She knew that she had what she would call “her special condition.” She knew she was not herself anymore. She knew she couldn’t do the things she loved to do. Then, the time came in August of that year (2018) when she could no longer attend school or play with her friends in the school playground. She loved riding bikes, but she could barely walk.
When we’d travel for treatment, people would look at Juliana, approach us, and say how beautiful she was. And Juliana would say to us, “Should I tell them I’m special? That I have a brain tumor?” We’d say, “Juliana, you can tell them whatever you want.” Sometimes she’d disclose it to people, and you’d just see the tears running down their faces. This happened every time we had to go somewhere for treatment, with people at waiting rooms, walking by at airport lobbies, with flight attendants, and people at baggage claims.
“She died after a year-long battle, just shy of 11 years old”
Juliana was diagnosed in February of 2018, when she was nine years old. DIPG is a terminal brain tumor with no treatment options. And it’s inoperable. She died after a year-long battle. She was just shy of 11 years old. By the end of it, she had no control over her muscles. She couldn’t walk. She could barely stand. DIPG took everything away from her, little by little, but not her cognitive abilities. Even when she could no longer speak, she communicated with her face. We knew what she meant just by looking at her eyes. She never lost her smile.
Following a DIPG diagnosis, the average survival is a meager 10 months. Some will live a little longer, some a little less. We don't fully understand the reasons for the difference in survival. For some, it’s really short (just weeks), while others last two years or longer. Such differences are linked to how the tumor behaves, the inflammatory process triggered by the tumor cells dying, and how the individual immune system responds to the aggression put forth by the tumor itself. Also, today there are new drugs targeting various pathways associated with tumor cell survival, either alone or in combination therapy, and are assisting in promoting longer patient survival. The mechanism(s) by which such drugs act is being investigated, and novel pathway associations are being identified. Hopefully, this will lead to novel targeted approaches.
The question for a parent in this situation becomes: is there a clinical trial - or something on the horizon - that may provide my child with a slightly longer living opportunity? I spent nearly 30 years as a professor and scientist in infectious and vector-borne diseases. I know how to run clinical trials, as I participated in my own human studies during my years in academia. So, when Juliana was diagnosed, we looked at various clinical trials that could extend her life.
“From my experience, it was bad from the beginning.”
We went through a very well-known clinical center, one that advertises themselves as the best in the world. But it’s just a numbers game. You have so many people coming through the door. Obviously, the rate of success is going to be greater than if you have fewer people coming to you. They tout themselves as having a 90% survival rate. But how many of those are less severe types of cancer? What about the aggressive cases? How many of those are surviving? Different forms of cancer can lead to different outcomes, with some today having a very short survival rate due to the limited options available.
From my experience, it was bad from the beginning. Some of the clinical mandates were just ridiculous. I tried to plead with them. I said, my daughter has a debilitating disease and you’re forcing us to travel. It’s 10 hours from point to point, even for blood draws that could have been done in our hometown. Standard blood draws that, for Juliana, were painful due to lack of proper training of the pediatric cancer nursing staff, and a lackluster post-operative support from hospital staff. But they wouldn’t see it from my perspective. They’d say, “Oh, it’s only a four-hour flight.” But for us, it was two and a half hours to get to the airport, three hours waiting for the flight, the flight itself, and then more driving. For a kid who could barely move at all. And every single time we did this, Juliana got worse. But again, we had no choice. The only treatment centers were at least 3,000 miles away. We were between a rock and a hard place, right? We signed the dotted line for the clinical trial and we knew what the game was. We had no other options. We were stuck there. The drug being tested in the clinical trial, at the time, was our only hope.
Above all, the clinical team lost her tumor sample, which was supposed to be used to assess the effects of the drug involved in the clinical trial (this is done in the laboratory using DNA and RNA sequencing methods, which are fairly trivial; I spent a lifetime using these approaches in my own lab!). This tumor sample (biopsy) was a requirement to be admitted into the trial, so how could they have possibly mishandled it? It was an entire year later - and only after my wife pressured them - that they claimed to have mislabeled it and put it in the wrong freezer. So, despite everything they put Juliana through, they did not even fulfill their end of the obligation.
Following the biopsy operation, Juliana got worse. But obviously the surgeon wouldn’t admit that.
And after the surgery, they provided very little support. Juliana went into a recovery room for a couple days at the hospital, and they basically left us alone. I wrote a letter to the hospital ombudsman of the hospital (someone appointed to investigate and resolve complaints) explaining what happened. I never got a reply. I sent it to four or five people in the hospital too. No response. They couldn’t have cared less.
“It was inconceivable to me”
We had no other choice but to be there. We even had to do the 10-hour travel ordeal for a simple blood sample. And on many of those trips, the nurses couldn’t even find a vein. If you work in the pediatric ward, you have to be able to get blood from a nine-year old on the first try. But they were totally incapable. One time, they damaged Juliana’s vein. They kept punching her arm. She was in deep pain. I said enough, let’s find someone else. Eventually we found someone on a different floor who could do it. But the whole thing seemed to be just plain incompetence.
All this and no accountability. I'm not a clinician, but what I was witnessing was inconceivable to me. I said, can’t we do better? Why can’t we use telehealth for this? Certainly, we encountered people who were trying to do their best to advance the drug that had shown a lot of promise for DIPG. But there were so many missteps and a lot of miscommunications.
So that’s the type of trial my daughter went through. And I blame myself. I hope she will forgive me when I see her again.
“It leaves people hanging by a thread”
DIPG patients in particular…they don’t have time. Juliana had 53 weeks. That's it. What can you do in 53 weeks? Yet the demands they put on terminal patients regarding acceptance into clinical trials - considering the short time they may have - are unacceptable. For example, if a drug or treatment offering a better outcome suddenly becomes available, there may be a need for a washout period, in which any previous drug/treatment must be cleared before one goes into this new regimen. However, if the clinical trial isn’t working for you, you have to wait upwards of 90 days before trying something new. I can understand this for less aggressive cancers. But how can someone wait 90 days on something that’s going to kill them in six months? We don’t have 90 days. This is a life and death situation. It’s a desperate situation. It leaves people hanging by a thread. And placebo trials for rare diseases? Come on. We can do better than that.
We need to modernize clinical trials and change the paradigm with systems medicine, which is a more team-oriented, collaborative approach. We need to address outrageous drug pricing, implement tele-health, and increase funding for diseases with the most imminent threat (I share more on this in Part II of my story).
“There’s nothing worse than what we went through”
It changed my life. I walked away from my profession. I had a very successful career and a wonderful lab that I built, working with students, postdocs, and several visiting scientists. I reformulated an entire program at this university. It was well-funded. I really made it count. And I walked away. Because I just couldn't do it. I couldn't be there anymore. Now I focus on advocacy for pediatric brain tumors, clinical trials, and supporting both the DIPG Advocacy Group and the Marc Jr Foundation. The Marc Jr Foundation does great work in support of DIPG patients and their families. I am privileged to be a member of the board. I try assisting with whatever I can, particularly in terms of changing current DIPG paradigms. And there’s several medical centers I’ve spoken with who have expanded their telehealth platforms significantly, particularly the ones related to DIPG. We share ideas and brainstorm solutions together. Real change will take a long time. I won’t see it in my lifetime. But I’m committed to it.
I’m one of a handful of people in the DIPG online groups I’m in who understands medicine and biology. People will ask me questions and for advice. They’re trying to find something that will bring them hope. And I surely hope they do. But the evidence just isn’t showing it yet. So I try to position things in a way that won’t offend them. But the worst part of it all is that I have to relive my own situation every single time. Because almost every day, there’s someone dying.
“There’s this image of a statue…it represents emptiness. This is how I feel.”
Grief is a rollercoaster. I’ll hear people talk about the five stages of grief. But I don’t agree with that. Because it’s not linear. Anything can happen, any time. One day you’re feeling good and the next day you don’t want to be around. And for me, most times I just don’t want to be here. I tell folks, I’m ready for my magic bus to come knocking. But yeah, people cope differently. I don't do parties anymore. I used to love drinking beer on the weekends. But never again. I totally lost interest. You need to find something to do when you’re coping. The busier you are, the more you can focus your mind on something, and the pain will give you breaks. It’s been four years and three months since Juliana passed, but the pain hasn’t given me any breaks. It still hurts. There’s this image of a statue…it represents emptiness. This is how I feel.
Getting involved is my way of coping. And cycling. I’ve always been an avid cycler, but now it really gives me breathing room and time to not think about everything. And I’ve done rides for charity, like the Colorado Courage Classic, which raises money for the local children’s hospital in Denver. I also hope to get more involved with The Morgan Adams Foundation. They are doing amazing things.
“I still sleep here often”
Every night I would come in here and read with Juliana, tell her stories. I’d often lay down with her and fall asleep. I still sleep here often.
We gave away quite a bit of her stuff. But we still need to get rid of some of her dresses and other things. Eventually if we move, we probably will. But it’s just not as easy as some people might think. Because there are stories behind everything.
This is the last pair of shoes she wore. She loved the outdoors, especially visits to Rocky Mountain National Park. And here’s the last book we read. There’s a bunch of different characters, so I’d make different voices and sounds for each. Juliana always knew what was coming when we read it. She’d look at me and just wait with anticipation. She loved it.
Juliana loved school. And she loved just about every subject. She was really looking forward to being part of the sixth grade class. But she never made it.
Mrs. Mahindroo and Mrs. Romo, the 6th grade teachers, set up a forever desk for Juliana at school. Her picture is always there. Mrs. Mahindroo always tells the story of Juliana. And even though she only made it a month into fifth grade before her symptoms got really bad, her teacher still retired the number 9, since that was Juliana’s. Now it goes from 8 to 10. Juliana made an impact on a lot of people.
We established the Juliana Character Award at her school. It’s a fund that gives a couple hundred dollars to a fourth and fifth grade student, selected by their respective teachers, to acknowledge something they had to overcome that year. It’s been five years running now. Last year I also took a position teaching science at her school. I taught ninth grade biology. It would have been Juliana’s class. Eventually I couldn’t continue with it. But it was a nice experience. I did it on her behalf. I wanted to understand the school she loved so much.
“I miss her every day”
Juliana knew she had this special thing called cancer, but she thought the treatment would make her better. She thought it would get rid of the tumor and give her life back, as she knew it. After she passed, my son, Felipe, shared with me that one day while they were playing in his room, Juliana asked if she was going to die. Felipe was encouraging, saying no, we’re looking for the right treatment. We’re gonna find it and you’re gonna get better.
Ultimately, options for Juliana weren’t available. But I still feel like a failure. Because of hindsight, you know? Why didn't I look at this? Why didn’t I try that? Maybe I could have looked deeper into things. And that’s the part I blame myself for.
I miss her every day. And I envy every parent who has a daughter. I just look out the window to my neighbors and I envy them. There is always a sense of “what if.” Every day there is a reason for me to not be here anymore. And I think this feeling is gonna stick with me until the day I’m no longer here.”
I hope you'll read Part II of my story, where I share more about my advocacy efforts at the federal level, why “rare” diseases aren’t actually rare but rather neglected, and the critical need to modernize clinical trials.
Here is what Juliana might have looked like today, generated through AI. Rest in peace, Juliana.
“Juliana was incredible. She wasn’t afraid of anything. She was very curious, always wanting to learn. She wasn't afraid of asking tough questions to anyone she met. She was always that one person who welcomed new people in, in any environment. And she was an athlete…the fastest swimmer on the swim team, an excited bike rider and inspired runner. She was so encouraging of everyone else, too. She loved animals, and had a special bond with her little dog, Fred. She loved having friends and just helping people. She was more courageous than I ever will be.
Juliana knew she had a brain cancer called DIPG (diffuse intrinsic pontine glioma). But she did not know how severe it was and that, likely, she did not have much time with us. We knew, but I just never had the courage to tell her. Some parents do tell their children, and that’s their choice. I just did not have the guts to do that. I kept telling myself the end is not near, even when I knew it was.
One time, Juliana overheard a conversation in the hospital. She later asked Tanja, “Mom, what does long-term survival mean?” We were furious at the carelessness of this talk, with Tanja telling the clinical staff to never bring up any comments regarding Juliana’s condition in front of her again.
In the weeks following radiotherapy and with her symptoms improving, Juliana regained some of her strength. She somewhat became aware about her physical limitations and was always tuned in to what people might be saying about her. She knew that she had what she would call “her special condition.” She knew she was not herself anymore. She knew she couldn’t do the things she loved to do. Then, the time came in August of that year (2018) when she could no longer attend school or play with her friends in the school playground. She loved riding bikes, but she could barely walk.
When we’d travel for treatment, people would look at Juliana, approach us, and say how beautiful she was. And Juliana would say to us, “Should I tell them I’m special? That I have a brain tumor?” We’d say, “Juliana, you can tell them whatever you want.” Sometimes she’d disclose it to people, and you’d just see the tears running down their faces. This happened every time we had to go somewhere for treatment, with people at waiting rooms, walking by at airport lobbies, with flight attendants, and people at baggage claims.
“She died after a year-long battle, just shy of 11 years old”
Juliana was diagnosed in February of 2018, when she was nine years old. DIPG is a terminal brain tumor with no treatment options. And it’s inoperable. She died after a year-long battle. She was just shy of 11 years old. By the end of it, she had no control over her muscles. She couldn’t walk. She could barely stand. DIPG took everything away from her, little by little, but not her cognitive abilities. Even when she could no longer speak, she communicated with her face. We knew what she meant just by looking at her eyes. She never lost her smile.
Following a DIPG diagnosis, the average survival is a meager 10 months. Some will live a little longer, some a little less. We don't fully understand the reasons for the difference in survival. For some, it’s really short (just weeks), while others last two years or longer. Such differences are linked to how the tumor behaves, the inflammatory process triggered by the tumor cells dying, and how the individual immune system responds to the aggression put forth by the tumor itself. Also, today there are new drugs targeting various pathways associated with tumor cell survival, either alone or in combination therapy, and are assisting in promoting longer patient survival. The mechanism(s) by which such drugs act is being investigated, and novel pathway associations are being identified. Hopefully, this will lead to novel targeted approaches.
The question for a parent in this situation becomes: is there a clinical trial - or something on the horizon - that may provide my child with a slightly longer living opportunity? I spent nearly 30 years as a professor and scientist in infectious and vector-borne diseases. I know how to run clinical trials, as I participated in my own human studies during my years in academia. So, when Juliana was diagnosed, we looked at various clinical trials that could extend her life.
“From my experience, it was bad from the beginning.”
We went through a very well-known clinical center, one that advertises themselves as the best in the world. But it’s just a numbers game. You have so many people coming through the door. Obviously, the rate of success is going to be greater than if you have fewer people coming to you. They tout themselves as having a 90% survival rate. But how many of those are less severe types of cancer? What about the aggressive cases? How many of those are surviving? Different forms of cancer can lead to different outcomes, with some today having a very short survival rate due to the limited options available.
From my experience, it was bad from the beginning. Some of the clinical mandates were just ridiculous. I tried to plead with them. I said, my daughter has a debilitating disease and you’re forcing us to travel. It’s 10 hours from point to point, even for blood draws that could have been done in our hometown. Standard blood draws that, for Juliana, were painful due to lack of proper training of the pediatric cancer nursing staff, and a lackluster post-operative support from hospital staff. But they wouldn’t see it from my perspective. They’d say, “Oh, it’s only a four-hour flight.” But for us, it was two and a half hours to get to the airport, three hours waiting for the flight, the flight itself, and then more driving. For a kid who could barely move at all. And every single time we did this, Juliana got worse. But again, we had no choice. The only treatment centers were at least 3,000 miles away. We were between a rock and a hard place, right? We signed the dotted line for the clinical trial and we knew what the game was. We had no other options. We were stuck there. The drug being tested in the clinical trial, at the time, was our only hope.
Above all, the clinical team lost her tumor sample, which was supposed to be used to assess the effects of the drug involved in the clinical trial (this is done in the laboratory using DNA and RNA sequencing methods, which are fairly trivial; I spent a lifetime using these approaches in my own lab!). This tumor sample (biopsy) was a requirement to be admitted into the trial, so how could they have possibly mishandled it? It was an entire year later - and only after my wife pressured them - that they claimed to have mislabeled it and put it in the wrong freezer. So, despite everything they put Juliana through, they did not even fulfill their end of the obligation.
Following the biopsy operation, Juliana got worse. But obviously the surgeon wouldn’t admit that.
And after the surgery, they provided very little support. Juliana went into a recovery room for a couple days at the hospital, and they basically left us alone. I wrote a letter to the hospital ombudsman of the hospital (someone appointed to investigate and resolve complaints) explaining what happened. I never got a reply. I sent it to four or five people in the hospital too. No response. They couldn’t have cared less.
“It was inconceivable to me”
We had no other choice but to be there. We even had to do the 10-hour travel ordeal for a simple blood sample. And on many of those trips, the nurses couldn’t even find a vein. If you work in the pediatric ward, you have to be able to get blood from a nine-year old on the first try. But they were totally incapable. One time, they damaged Juliana’s vein. They kept punching her arm. She was in deep pain. I said enough, let’s find someone else. Eventually we found someone on a different floor who could do it. But the whole thing seemed to be just plain incompetence.
All this and no accountability. I'm not a clinician, but what I was witnessing was inconceivable to me. I said, can’t we do better? Why can’t we use telehealth for this? Certainly, we encountered people who were trying to do their best to advance the drug that had shown a lot of promise for DIPG. But there were so many missteps and a lot of miscommunications.
So that’s the type of trial my daughter went through. And I blame myself. I hope she will forgive me when I see her again.
“It leaves people hanging by a thread”
DIPG patients in particular…they don’t have time. Juliana had 53 weeks. That's it. What can you do in 53 weeks? Yet the demands they put on terminal patients regarding acceptance into clinical trials - considering the short time they may have - are unacceptable. For example, if a drug or treatment offering a better outcome suddenly becomes available, there may be a need for a washout period, in which any previous drug/treatment must be cleared before one goes into this new regimen. However, if the clinical trial isn’t working for you, you have to wait upwards of 90 days before trying something new. I can understand this for less aggressive cancers. But how can someone wait 90 days on something that’s going to kill them in six months? We don’t have 90 days. This is a life and death situation. It’s a desperate situation. It leaves people hanging by a thread. And placebo trials for rare diseases? Come on. We can do better than that.
We need to modernize clinical trials and change the paradigm with systems medicine, which is a more team-oriented, collaborative approach. We need to address outrageous drug pricing, implement tele-health, and increase funding for diseases with the most imminent threat (I share more on this in Part II of my story).
“There’s nothing worse than what we went through”
It changed my life. I walked away from my profession. I had a very successful career and a wonderful lab that I built, working with students, postdocs, and several visiting scientists. I reformulated an entire program at this university. It was well-funded. I really made it count. And I walked away. Because I just couldn't do it. I couldn't be there anymore. Now I focus on advocacy for pediatric brain tumors, clinical trials, and supporting both the DIPG Advocacy Group and the Marc Jr Foundation. The Marc Jr Foundation does great work in support of DIPG patients and their families. I am privileged to be a member of the board. I try assisting with whatever I can, particularly in terms of changing current DIPG paradigms. And there’s several medical centers I’ve spoken with who have expanded their telehealth platforms significantly, particularly the ones related to DIPG. We share ideas and brainstorm solutions together. Real change will take a long time. I won’t see it in my lifetime. But I’m committed to it.
I’m one of a handful of people in the DIPG online groups I’m in who understands medicine and biology. People will ask me questions and for advice. They’re trying to find something that will bring them hope. And I surely hope they do. But the evidence just isn’t showing it yet. So I try to position things in a way that won’t offend them. But the worst part of it all is that I have to relive my own situation every single time. Because almost every day, there’s someone dying.
“There’s this image of a statue…it represents emptiness. This is how I feel.”
Grief is a rollercoaster. I’ll hear people talk about the five stages of grief. But I don’t agree with that. Because it’s not linear. Anything can happen, any time. One day you’re feeling good and the next day you don’t want to be around. And for me, most times I just don’t want to be here. I tell folks, I’m ready for my magic bus to come knocking. But yeah, people cope differently. I don't do parties anymore. I used to love drinking beer on the weekends. But never again. I totally lost interest. You need to find something to do when you’re coping. The busier you are, the more you can focus your mind on something, and the pain will give you breaks. It’s been four years and three months since Juliana passed, but the pain hasn’t given me any breaks. It still hurts. There’s this image of a statue…it represents emptiness. This is how I feel.
Getting involved is my way of coping. And cycling. I’ve always been an avid cycler, but now it really gives me breathing room and time to not think about everything. And I’ve done rides for charity, like the Colorado Courage Classic, which raises money for the local children’s hospital in Denver. I also hope to get more involved with The Morgan Adams Foundation. They are doing amazing things.
“I still sleep here often”
Every night I would come in here and read with Juliana, tell her stories. I’d often lay down with her and fall asleep. I still sleep here often.
We gave away quite a bit of her stuff. But we still need to get rid of some of her dresses and other things. Eventually if we move, we probably will. But it’s just not as easy as some people might think. Because there are stories behind everything.
This is the last pair of shoes she wore. She loved the outdoors, especially visits to Rocky Mountain National Park. And here’s the last book we read. There’s a bunch of different characters, so I’d make different voices and sounds for each. Juliana always knew what was coming when we read it. She’d look at me and just wait with anticipation. She loved it.
Juliana loved school. And she loved just about every subject. She was really looking forward to being part of the sixth grade class. But she never made it.
Mrs. Mahindroo and Mrs. Romo, the 6th grade teachers, set up a forever desk for Juliana at school. Her picture is always there. Mrs. Mahindroo always tells the story of Juliana. And even though she only made it a month into fifth grade before her symptoms got really bad, her teacher still retired the number 9, since that was Juliana’s. Now it goes from 8 to 10. Juliana made an impact on a lot of people.
We established the Juliana Character Award at her school. It’s a fund that gives a couple hundred dollars to a fourth and fifth grade student, selected by their respective teachers, to acknowledge something they had to overcome that year. It’s been five years running now. Last year I also took a position teaching science at her school. I taught ninth grade biology. It would have been Juliana’s class. Eventually I couldn’t continue with it. But it was a nice experience. I did it on her behalf. I wanted to understand the school she loved so much.
“I miss her every day”
Juliana knew she had this special thing called cancer, but she thought the treatment would make her better. She thought it would get rid of the tumor and give her life back, as she knew it. After she passed, my son, Felipe, shared with me that one day while they were playing in his room, Juliana asked if she was going to die. Felipe was encouraging, saying no, we’re looking for the right treatment. We’re gonna find it and you’re gonna get better.
Ultimately, options for Juliana weren’t available. But I still feel like a failure. Because of hindsight, you know? Why didn't I look at this? Why didn’t I try that? Maybe I could have looked deeper into things. And that’s the part I blame myself for.
I miss her every day. And I envy every parent who has a daughter. I just look out the window to my neighbors and I envy them. There is always a sense of “what if.” Every day there is a reason for me to not be here anymore. And I think this feeling is gonna stick with me until the day I’m no longer here.”
I hope you'll read Part II of my story, where I share more about my advocacy efforts at the federal level, why “rare” diseases aren’t actually rare but rather neglected, and the critical need to modernize clinical trials.
Here is what Juliana might have looked like today, generated through AI. Rest in peace, Juliana.
“Juliana was incredible. She wasn’t afraid of anything. She was very curious, always wanting to learn. She wasn't afraid of asking tough questions to anyone she met. She was always that one person who welcomed new people in, in any environment. And she was an athlete…the fastest swimmer on the swim team, an excited bike rider and inspired runner. She was so encouraging of everyone else, too. She loved animals, and had a special bond with her little dog, Fred. She loved having friends and just helping people. She was more courageous than I ever will be.
Juliana knew she had a brain cancer called DIPG (diffuse intrinsic pontine glioma). But she did not know how severe it was and that, likely, she did not have much time with us. We knew, but I just never had the courage to tell her. Some parents do tell their children, and that’s their choice. I just did not have the guts to do that. I kept telling myself the end is not near, even when I knew it was.
One time, Juliana overheard a conversation in the hospital. She later asked Tanja, “Mom, what does long-term survival mean?” We were furious at the carelessness of this talk, with Tanja telling the clinical staff to never bring up any comments regarding Juliana’s condition in front of her again.
In the weeks following radiotherapy and with her symptoms improving, Juliana regained some of her strength. She somewhat became aware about her physical limitations and was always tuned in to what people might be saying about her. She knew that she had what she would call “her special condition.” She knew she was not herself anymore. She knew she couldn’t do the things she loved to do. Then, the time came in August of that year (2018) when she could no longer attend school or play with her friends in the school playground. She loved riding bikes, but she could barely walk.
When we’d travel for treatment, people would look at Juliana, approach us, and say how beautiful she was. And Juliana would say to us, “Should I tell them I’m special? That I have a brain tumor?” We’d say, “Juliana, you can tell them whatever you want.” Sometimes she’d disclose it to people, and you’d just see the tears running down their faces. This happened every time we had to go somewhere for treatment, with people at waiting rooms, walking by at airport lobbies, with flight attendants, and people at baggage claims.
“She died after a year-long battle, just shy of 11 years old”
Juliana was diagnosed in February of 2018, when she was nine years old. DIPG is a terminal brain tumor with no treatment options. And it’s inoperable. She died after a year-long battle. She was just shy of 11 years old. By the end of it, she had no control over her muscles. She couldn’t walk. She could barely stand. DIPG took everything away from her, little by little, but not her cognitive abilities. Even when she could no longer speak, she communicated with her face. We knew what she meant just by looking at her eyes. She never lost her smile.
Following a DIPG diagnosis, the average survival is a meager 10 months. Some will live a little longer, some a little less. We don't fully understand the reasons for the difference in survival. For some, it’s really short (just weeks), while others last two years or longer. Such differences are linked to how the tumor behaves, the inflammatory process triggered by the tumor cells dying, and how the individual immune system responds to the aggression put forth by the tumor itself. Also, today there are new drugs targeting various pathways associated with tumor cell survival, either alone or in combination therapy, and are assisting in promoting longer patient survival. The mechanism(s) by which such drugs act is being investigated, and novel pathway associations are being identified. Hopefully, this will lead to novel targeted approaches.
The question for a parent in this situation becomes: is there a clinical trial - or something on the horizon - that may provide my child with a slightly longer living opportunity? I spent nearly 30 years as a professor and scientist in infectious and vector-borne diseases. I know how to run clinical trials, as I participated in my own human studies during my years in academia. So, when Juliana was diagnosed, we looked at various clinical trials that could extend her life.
“From my experience, it was bad from the beginning.”
We went through a very well-known clinical center, one that advertises themselves as the best in the world. But it’s just a numbers game. You have so many people coming through the door. Obviously, the rate of success is going to be greater than if you have fewer people coming to you. They tout themselves as having a 90% survival rate. But how many of those are less severe types of cancer? What about the aggressive cases? How many of those are surviving? Different forms of cancer can lead to different outcomes, with some today having a very short survival rate due to the limited options available.
From my experience, it was bad from the beginning. Some of the clinical mandates were just ridiculous. I tried to plead with them. I said, my daughter has a debilitating disease and you’re forcing us to travel. It’s 10 hours from point to point, even for blood draws that could have been done in our hometown. Standard blood draws that, for Juliana, were painful due to lack of proper training of the pediatric cancer nursing staff, and a lackluster post-operative support from hospital staff. But they wouldn’t see it from my perspective. They’d say, “Oh, it’s only a four-hour flight.” But for us, it was two and a half hours to get to the airport, three hours waiting for the flight, the flight itself, and then more driving. For a kid who could barely move at all. And every single time we did this, Juliana got worse. But again, we had no choice. The only treatment centers were at least 3,000 miles away. We were between a rock and a hard place, right? We signed the dotted line for the clinical trial and we knew what the game was. We had no other options. We were stuck there. The drug being tested in the clinical trial, at the time, was our only hope.
Above all, the clinical team lost her tumor sample, which was supposed to be used to assess the effects of the drug involved in the clinical trial (this is done in the laboratory using DNA and RNA sequencing methods, which are fairly trivial; I spent a lifetime using these approaches in my own lab!). This tumor sample (biopsy) was a requirement to be admitted into the trial, so how could they have possibly mishandled it? It was an entire year later - and only after my wife pressured them - that they claimed to have mislabeled it and put it in the wrong freezer. So, despite everything they put Juliana through, they did not even fulfill their end of the obligation.
Following the biopsy operation, Juliana got worse. But obviously the surgeon wouldn’t admit that.
And after the surgery, they provided very little support. Juliana went into a recovery room for a couple days at the hospital, and they basically left us alone. I wrote a letter to the hospital ombudsman of the hospital (someone appointed to investigate and resolve complaints) explaining what happened. I never got a reply. I sent it to four or five people in the hospital too. No response. They couldn’t have cared less.
“It was inconceivable to me”
We had no other choice but to be there. We even had to do the 10-hour travel ordeal for a simple blood sample. And on many of those trips, the nurses couldn’t even find a vein. If you work in the pediatric ward, you have to be able to get blood from a nine-year old on the first try. But they were totally incapable. One time, they damaged Juliana’s vein. They kept punching her arm. She was in deep pain. I said enough, let’s find someone else. Eventually we found someone on a different floor who could do it. But the whole thing seemed to be just plain incompetence.
All this and no accountability. I'm not a clinician, but what I was witnessing was inconceivable to me. I said, can’t we do better? Why can’t we use telehealth for this? Certainly, we encountered people who were trying to do their best to advance the drug that had shown a lot of promise for DIPG. But there were so many missteps and a lot of miscommunications.
So that’s the type of trial my daughter went through. And I blame myself. I hope she will forgive me when I see her again.
“It leaves people hanging by a thread”
DIPG patients in particular…they don’t have time. Juliana had 53 weeks. That's it. What can you do in 53 weeks? Yet the demands they put on terminal patients regarding acceptance into clinical trials - considering the short time they may have - are unacceptable. For example, if a drug or treatment offering a better outcome suddenly becomes available, there may be a need for a washout period, in which any previous drug/treatment must be cleared before one goes into this new regimen. However, if the clinical trial isn’t working for you, you have to wait upwards of 90 days before trying something new. I can understand this for less aggressive cancers. But how can someone wait 90 days on something that’s going to kill them in six months? We don’t have 90 days. This is a life and death situation. It’s a desperate situation. It leaves people hanging by a thread. And placebo trials for rare diseases? Come on. We can do better than that.
We need to modernize clinical trials and change the paradigm with systems medicine, which is a more team-oriented, collaborative approach. We need to address outrageous drug pricing, implement tele-health, and increase funding for diseases with the most imminent threat (I share more on this in Part II of my story).
“There’s nothing worse than what we went through”
It changed my life. I walked away from my profession. I had a very successful career and a wonderful lab that I built, working with students, postdocs, and several visiting scientists. I reformulated an entire program at this university. It was well-funded. I really made it count. And I walked away. Because I just couldn't do it. I couldn't be there anymore. Now I focus on advocacy for pediatric brain tumors, clinical trials, and supporting both the DIPG Advocacy Group and the Marc Jr Foundation. The Marc Jr Foundation does great work in support of DIPG patients and their families. I am privileged to be a member of the board. I try assisting with whatever I can, particularly in terms of changing current DIPG paradigms. And there’s several medical centers I’ve spoken with who have expanded their telehealth platforms significantly, particularly the ones related to DIPG. We share ideas and brainstorm solutions together. Real change will take a long time. I won’t see it in my lifetime. But I’m committed to it.
I’m one of a handful of people in the DIPG online groups I’m in who understands medicine and biology. People will ask me questions and for advice. They’re trying to find something that will bring them hope. And I surely hope they do. But the evidence just isn’t showing it yet. So I try to position things in a way that won’t offend them. But the worst part of it all is that I have to relive my own situation every single time. Because almost every day, there’s someone dying.
“There’s this image of a statue…it represents emptiness. This is how I feel.”
Grief is a rollercoaster. I’ll hear people talk about the five stages of grief. But I don’t agree with that. Because it’s not linear. Anything can happen, any time. One day you’re feeling good and the next day you don’t want to be around. And for me, most times I just don’t want to be here. I tell folks, I’m ready for my magic bus to come knocking. But yeah, people cope differently. I don't do parties anymore. I used to love drinking beer on the weekends. But never again. I totally lost interest. You need to find something to do when you’re coping. The busier you are, the more you can focus your mind on something, and the pain will give you breaks. It’s been four years and three months since Juliana passed, but the pain hasn’t given me any breaks. It still hurts. There’s this image of a statue…it represents emptiness. This is how I feel.
Getting involved is my way of coping. And cycling. I’ve always been an avid cycler, but now it really gives me breathing room and time to not think about everything. And I’ve done rides for charity, like the Colorado Courage Classic, which raises money for the local children’s hospital in Denver. I also hope to get more involved with The Morgan Adams Foundation. They are doing amazing things.
“I still sleep here often”
Every night I would come in here and read with Juliana, tell her stories. I’d often lay down with her and fall asleep. I still sleep here often.
We gave away quite a bit of her stuff. But we still need to get rid of some of her dresses and other things. Eventually if we move, we probably will. But it’s just not as easy as some people might think. Because there are stories behind everything.
This is the last pair of shoes she wore. She loved the outdoors, especially visits to Rocky Mountain National Park. And here’s the last book we read. There’s a bunch of different characters, so I’d make different voices and sounds for each. Juliana always knew what was coming when we read it. She’d look at me and just wait with anticipation. She loved it.
Juliana loved school. And she loved just about every subject. She was really looking forward to being part of the sixth grade class. But she never made it.
Mrs. Mahindroo and Mrs. Romo, the 6th grade teachers, set up a forever desk for Juliana at school. Her picture is always there. Mrs. Mahindroo always tells the story of Juliana. And even though she only made it a month into fifth grade before her symptoms got really bad, her teacher still retired the number 9, since that was Juliana’s. Now it goes from 8 to 10. Juliana made an impact on a lot of people.
We established the Juliana Character Award at her school. It’s a fund that gives a couple hundred dollars to a fourth and fifth grade student, selected by their respective teachers, to acknowledge something they had to overcome that year. It’s been five years running now. Last year I also took a position teaching science at her school. I taught ninth grade biology. It would have been Juliana’s class. Eventually I couldn’t continue with it. But it was a nice experience. I did it on her behalf. I wanted to understand the school she loved so much.
“I miss her every day”
Juliana knew she had this special thing called cancer, but she thought the treatment would make her better. She thought it would get rid of the tumor and give her life back, as she knew it. After she passed, my son, Felipe, shared with me that one day while they were playing in his room, Juliana asked if she was going to die. Felipe was encouraging, saying no, we’re looking for the right treatment. We’re gonna find it and you’re gonna get better.
Ultimately, options for Juliana weren’t available. But I still feel like a failure. Because of hindsight, you know? Why didn't I look at this? Why didn’t I try that? Maybe I could have looked deeper into things. And that’s the part I blame myself for.
I miss her every day. And I envy every parent who has a daughter. I just look out the window to my neighbors and I envy them. There is always a sense of “what if.” Every day there is a reason for me to not be here anymore. And I think this feeling is gonna stick with me until the day I’m no longer here.”
I hope you'll read Part II of my story, where I share more about my advocacy efforts at the federal level, why “rare” diseases aren’t actually rare but rather neglected, and the critical need to modernize clinical trials.
Here is what Juliana might have looked like today, generated through AI. Rest in peace, Juliana.
Confronting a terminal diagnosis for your child likely is the most difficult challenge anyone will ever face. In the case of DIPG, for which there is no effective treatment and radiotherapy provides transient improvement of symptoms, clinical trials are the best option. Search for the availability and the eligibility requirements for trials specific to the disease. Ask the medical team. Also, know you are not alone in this fight. Many families have been down this road and are always willing to share their experiences. There are no right or wrong choices. Critically important, learn about palliative home care and what may be available via Medicaid.
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
