Ellie Cogan was diagnosed with infant Glioblastoma, when she was 10 months old, in July 2020.
Brittany and Jonathan Cogan, Ellie’s parents, are sharing their daughter and family’s journey
through the disease, treatments, and challenges.
This interview is part of MyChildCancer’s mission
to extract hidden life-saving information and make it easily accessible to other parents all over the world.
Because knowledge saves lives.
Transcript of the interview:
My name is Brittany Cogan and I’m Jonathan Cogan. Our daughter’s name is Ellie Ruby Cogan, and she is two and a half years old.
What were the early symptoms?
When Ellie was 10.5 months old, we noticed she stopped moving her left arm.
Out of concern, we took her to a pediatric orthopedic surgeon in New Jersey to get an x-ray of her arm. The doctor said he noticed some shadowing on the X-ray.
And he put a cast on Ellie’s left arm and said it would take about a few weeks to heal.
After two weeks, he removed the cast, and Ellie still was not moving her left arm. At this point, Ellie became more irritable. She was crying a lot, she was very tired all the time, and she eventually just wanted to sleep all day and not wake up.
So we took Ellie to Cornell Hospital, in Manhattan, the doctors there during the height of the pandemic diagnosed it as dehydration.
They gave Ellie IV fluids and sent us home that night.
The next day, Ellie was still not feeling well; she was basically sleeping all day, and would not wake up. We took her to the same hospital, to Cornell hospital again, and we demanded that they admit her until they got to the bottom of it.
They did lots and lots of tests, and nothing was coming up. Her blood work was normal. They were speculating that it was botulism, that didn’t come up as positive tests for botulism. She still was sleeping there, not arousing, and with recommendations from a family friend and a sister-in-law who are both in the medical field, they told us that we needed to ask for an MRI.
In the states (US) in hospitals, it’s typically not usual to do an MRI over the weekend, but we weren’t taking no for an answer.
And that night, over the weekend, Saturday night, we got the MRI, they did not have to sedate Ellie for the MRI because she was already lifeless. They wrapped her up. And they started the MRI. And the resident came out to ask us for permission to continue the MRI with contrast, they notice something on the MRI.
When they continue the MRI, the neurosurgery resident on call had told us that he saw a large mass in the scan. We didn’t really process what that was. We didn’t know much about what was going on. It was the middle of the night. But they told us that we would have to sleep that night and the next morning Ellie would be operated first thing in the morning for brain surgery.
Ellie’s tumor was about eight centimeters. So it was quite large given her age. And as a result, it pretty much covered her entire right hemisphere. So the, you know, the surgery was more emergent because they needed to make sure that at this point, they were very worried. They wanted to make sure that you know there was no hemorrhaging and they had to operate as quickly as they could.
What did you do after the diagnosis?
The next morning, we met with one of the neurosurgery residents who would be doing the surgery along with her colleague, and she was very optimistic and said that she thinks she can get most of it, if not all of the tumor out. About four hours later, the surgery was finished. We met with the neurosurgery doctors and they said that they had a gross total resection they got all of the tumor out. Neurosurgeons were and still are: Dr. Caitlin Hoffman and Dr. Jeffrey Greenfield, part of Weill Cornell Brain and Spine and they also are affiliated with Memorial Sloan Kettering.
We were actually connected with the head of neuro oncology, the chief at Memorial Sloan Kettering who would travel over to Cornell across the street but come to us and you know, maybe that he would meet with us and sort of gave us an update that they’re going to work on the pathology. And they would get this pathology results, the full pathology results. Back by Wednesday.
During the surgery, they do a frozen pathology. And they generally don’t share those results because it’s preliminary at best. But it was very clear that this was what they sort of classified as a glioma in terms of the parent tumor. And then in addition to that, they noticed that it was very vascular, and that it seemed like it was high grade.
So they didn’t give us anything definitive, but they gave us enough, you know, enough information to be pretty worried about what it could possibly be. And the one thing that they told us is, don’t google this, because it’s very different for what you see from infantile type tumors relative to pediatric and adult.
So of course, we immediately went back and we googled everything we could. And it was very frightening. And we, you know, by Wednesday, because that’s when Memorial Sloan Kettering does their tumor board. So they came and they met with us. And I remember from doing these Google searches, the one thing that I wanted to make sure that we did not hear in this meeting was that it was a glioblastoma. And he starts off the conversation and he says, you know, so I have what I think is fairly good news, Ellie has a grade 4 glioblastoma. And, you know, part of me heard what he said, but part of my heart just dropped to my stomach as well.
And what he explained, just like the surgeon had told us is that because it’s an infantile glioblastoma, from the research that they’ve done, they felt like they could treat this with low toxicity, chemotherapy, and that this wasn’t treatable, but this was actually curable.
And to hear that, as a parent, you know, I didn’t really care what the histology was, whatever, whether it was glioblastoma or anything else.
When you hear that from your oncologist, who’s one of you know, the chief at the one of the most reputable hospitals in the entire world, You just felt like you were in a really, really good place.
What were the protocol and treatments your child received?
Dr. Matthias Karajannis is the chief neuro-oncologist at Memorial Sloan Kettering, and he told us that the protocol for Ellie’s grade four glioblastoma was to do a chemo regimen of carboplatin and etoposide, which were less toxic chemotherapy agents.
The protocol was three days of chemo for two weeks, then one week off, and we would do four to six cycles of this regimen for up to 10 cycles depending on Ellie’s tolerance.
Our oncologist explained to us that chemo was very binary. so it either works or it doesn’t work, there was nothing in between. And Ellie to a certain extent had mixed signals in terms of how the chemo was effective. So from his point of view, and doing this research, and he showed us all the different numbers of why he chose this protocol, he decided that it would be optimal to use different types of chemotherapy that were different from what we were initially using. He sort of explained that there were four different strands, he had used two, he wants to use the two other types of chemo. But make sure that those chemos were going to be most effective for glioma, which is the umbrella type of tumor that that glioblastoma falls under, because he found that this would be most effective. And this is he also recommended different types of chemotherapies that are generally used for glioblastoma treatment for adults and pediatrics, and they were going to have to work on finding the right dosage for someone that’s Ellie’s age.
He actually prescribed lomustine and temozolomide, which are oral chemos, and they found a special pharmacy to make them liquid. We did the lomustine in liquid form, but we were very afraid to do chemo in liquid form for Ellie because we she was still so little, she was, you know, a year old at the time, and if she spit it out, she wouldn’t be getting the chemo.
So the lomustine was a one time dose for the entire cycle, and the temozolomide, the doctors were able to find a port, an IV fusion for that, for that dose for Ellie.
So she received IV chemo for the temozolomide, even though that’s not the usual protocol for that.
Can you describe how you dealt with the side effects?
She was on nausea medication called odosotrine and hydroxide, and both she tolerated well, the medication sometimes made her tired.
But she overall felt well she didn’t lose any of her hair, and Ellie had one cycle of the temozolomide and lomustine. It was three days on. It’s one week and then five weeks off, right, so, Right.
So after that scan, we continued with the protocol of the carboplatin and etoposide. And Ellie tolerated the chemo very well. She didn’t lose any hair. She was not nauseous. She took anti nausea medication preventatively. But she showed no signs of nausea. She never vomited. Her gut was fine. She wasn’t very tired. She, you know, she was getting back to herself, even though she still had the left sided weakness.
After leaving inpatient rehab, we continued outpatient rehab at Memorial Sloan Kettering, all the while she was getting the chemo. After two cycles, of the carboplatin and etoposide, Ellie had a scan, and the scan showed again, tumor resurgence.
So the chemo was not effective on Ellie’s tumor.
We found that when Ellie was crawling, she started to bang into things a little bit she was starting, she was getting a little bit more irritable. So instead of going to PT and OT, we decided that we were going to bring her up to get, you know, to sort of just get checked out by the by the regular floor of MSK, to make sure that they just did a few test results to make sure that her levels looked at right, and there was nothing that we should be concerned about. So you know, they said that there’s this term, it’s called skin-xiety. So when you have a scan that’s scheduled, you get really anxious about it, and you start looking for things. And they said it could be that but you know, what’s the difference between doing it a day later or a day earlier? Why don’t we do it on Tuesday to make sure that you guys are more comfortable, that’s really important to us. So they scheduled, they brought the MRI up one day earlier. And sure enough, they did find that Ellie had not only the tumor recurrence, which was a little bit less of a concern from, you know, an emergent standpoint, but she had a lot of fluid buildup in her brain, which causes pressure it can cause, can cause dizziness, it can cause irritability as a result of headaches. And that was something that, you know, that definitely was more of an immediate concern.
So we decided we had to sort of put the tumor recurrence on the table first, sort of set that aside, and really deal with the issue of having the cranial pressure that Ellie was facing. And we had, we had the first surgery that was scheduled with something called burr holes surgery, in which they made a very small hole in her in her scalp.
In order to drain some of the fluid that was building up in her brain, they would insert something called a shunt. And they decided not to install a shunt, they didn’t feel like she necessarily needed something permanently, nor would the fluid necessarily drain because it was thick. And they used an irrigation tool essentially to drain all the heavier, thicker fluid that was in her brain and you know, reduce some of that pressure. And then thereafter they would they would then be able to work with neurosurgery, work with the oncologists in order to really come up with a plan of what they could do going forward because as our oncologist told us, we are now on unchartered territory.
So as Brittany mentioned in the beginning, we were basing the research, we were, the protocol that we were following was based on research of just five different patients that had this infantile glioblastoma. And we are now sort of past the point of, you know, sort of the medical literature that was written up about how you can sort of what protocols you can follow. So we had to sort of think about this totally new game plan of which direction we should take.
What were the main crossroads you encountered?
After Ellie’s initial surgery, she had lost feeling in her left side, she still had the left sided weakness, she was not yet moving her left arm or her left leg because of where the tumor was, and because the surgery was close, if not on the motor strip. So right from the surgery, she spent a few days in the ICU, and then she was transferred to children’s specialized hospital for rehabilitation in New Jersey, where she was inpatient there for four weeks.
However, her time there was cut short because Ellie had fallen out of the crib and onto her head, and in the trauma unit at Robert Wood Johnson hospital which is part of the rehab facility at Children’s specialized hospital, the scan showed no bleeding. But Memorial Sloan Kettering wanted to follow up with that and do an additional MRI scan just to conclude that nothing was wrong with her head after the surgery.
And in the scan, that they had done, found tumor resurgence after the initial surgery.
So the resurgence was about three weeks after the initial surgery, which meant that this tumor was growing very, very quickly, and they did not get all of it out.
The issue is that there is always going to be some sort of, you know, cells that are leftover. And what it seemed like was occurring was yes, they got the entire tumor out. But those cells were quickly, quickly multiplying, and we’re creating a new tumor. So as Brittany mentioned, you know, two, three weeks after the first resection surgery, to already have a regrowth was something of concern. But our oncologist felt like because they generally weren’t necessarily doing MRIs for all their different patients, all the different, you know, they had these five patients that they sort of, were basing this research off of, they didn’t scan those patients between the first resection and before they started chemo. So he felt like it was entirely possible that everyone may have had this recurrence, pre-chemo and it wasn’t going it wasn’t going to be this, you know, a large measure of concern for him and he wasn’t going to change his overall protocol as a result of the tumor reoccurring. You know, there are sort of two things that our oncologist guided us towards in terms of why he was so optimistic that Ellie’s original diagnosis first was Ellie’s age, you know, infantile glioblastoma should, you know, should and from the research is different from pediatric and adult glioblastoma.
She was just shy of 11 months when she was diagnosed.
The second component was that you know, the best, the best treatments for any cancer are targeted gene therapies. And he felt that there was a very, very strong chance that Ellie would be a match for one of these targeted gene therapies. And the unfortunate reality is that right along the time that we were getting that second scan back that Ellie’s tumor had recurred, and this was Yum-Kippur, I believe. We also got a call that she actually was not going to be a match for any of the possible targeted gene therapy fusions that Memorial Sloan Kettering had available for these types of, for these types of tumors. So, you know, again, at this point, we spoke about forks in the road, this was a really big one for us, because we sort of came in with a lot of optimism around feeling good about Ellie’s age, which you know, it still is true. But the things about low toxicity, chemo, this being a little bit more preventative, having a targeted gene therapy very quickly, were no longer options, you start thinking about, you know, there’s got to be some other treatments, something out there that you can, you know, you can actually point two.
And this is why I think this project is so important that hopefully parents can hear from other parents, because I think the parents are the ones that really have the most knowledge just going through it. And you know, many people that I’ve spoken to, that are in similar position to us have made the same exact phone calls, and it saves a lot of time and aggravation.
We started calling every single hospital in the US to try to figure out whether there was, you know, any notion of you know, have you ever seen something like this before?
and the one hospital that we touch base with that, said, yes, we’ve done a lot of this. And, you know, we think that we have the right treatment for you, was St. Jude.
When we were speaking with Dr. Amar Gajjar. From St. Jude, he had mentioned that they have a protocol that they follow for it seems like most brain tumors, not just specifically glioblastoma is, and that it was quite effective. And we brought this information back to our oncologist and our oncologist was always so thoughtful with his approach and so open to different ideas and really had said, I will connect with anyone that you want to connect with. And I will follow if you are more comfortable with the protocol from St. Jude, you really shouldn’t have to pick up your life and go to Memphis, you have other children, you know, that you’re thinking about. I will do that for you in Memorial Sloan Kettering. And we want to make sure that Ellie, you know, so many kids get sick from the chemotherapy and you know, that kills them quicker than cancer and we wanted to make sure that we were giving Ellie the best shot not only from you know, from the standpoint of you know what we were doing from an oncology standpoint but also making sure that we weren’t putting toxins in her body that were going to harm her long term. So we decided to go with the MSK protocol, which unfortunately also wasn’t effective.
But again, as I sort of think back about the decisions we made, I really don’t think I would have changed any of the decisions we did make. Because from my understanding, again, thinking that chemotherapy is more binary in nature, we sort of, we tried every single chemotherapy type. And our oncologist had essentially guided us that, you know, chemotherapy isn’t going to be the answer here. And you, unfortunately, are going to have to, you know, we’re going to have to try something else.
We had to turn towards proton radiation. When we spoke with the radio oncologist at Memorial Sloan Kettering, whose name is Dr. Suzanne Walden, she had told us that she’s seen lots of success with children with brain tumors, and that she’s also radiated with proton radiation for children under three years old, and that they’ve been okay. And it was nice to have another outlet of treatment for Ellie because we had almost lost hope.
So in Ellie’s case, she was the perfect candidate for something like proton radiation given her age. And given that she, you know, she’s also radiating her brain that you wanted to make sure that you were radiating just the area that you want it to radiate. And that you hopefully we’re not harming any of the surrounding tissue.
Ellie had her third tumor resection, and we were told that Ellie can start the proton radiation when she recovered from the resection surgery, and she left the ICU. She also had a shunt placement surgery to drain the fluid properly in her brain. And after that surgery, she did not recover. She had an infection, and they couldn’t find out the source of the infection. She had fevers she was sleeping most of the time, and she spent a lot of time in the ICU at Memorial Sloan Kettering. Finally, they decided to give her heavy IV antibiotics. And with a 14-day protocol, she was feeling better. And she was able to start the proton radiation at the New York Proton Center, which was a brand new center in Harlem, New York.
How is your child doing today?
After the radiation, we had a follow-up scan, and the scan indicated no evidence of disease. So we were told that that can be the first scan and that, you know, we would need to see the next scan because sometimes these are just immediate results. But it was still very, very promising news.
The scan after that scan also concluded that there was no evidence of disease. And Ellie is now 2.5 years old, and all of our scans have shown that there is no evidence of disease.
So till today, Ellie still has left-sided weakness. She’s not yet walking, and she’s not able to use her left arm and her left hand to its full capacity. And this is all again due to the original tumor, which is how we found out there was something wrong when she wasn’t moving her left arm, and also because of all the surgeries that she’s had that were close to the motor strip,
Ellie has physical and occupational therapy every day to help with spasticity which is tightness of the muscles and to help her gain feeling and gain the nerve endings back in her left side.
She does that both at Memorial Sloan Kettering and locally near our home in New Jersey.
She also has therapists come to the house. And she also does hippotherapy which is therapy on a horse with occupational physical therapists to help with core balance. And she does aquatic therapy in the pool because that’s also another way of helping with the spasticity.
Something else that we’ve started with is Botox injection treatments, which help loosen the muscles in certain areas to also help with the spasticity, and all of this therapy and all of these treatments are working, it’s just taking time, and now Ellie is on her own benchmark and she’s achieving her goals every single day and she’ll be walking when she’s ready. She does speech therapy in Memorial Sloan Kettering and at home and she’s also going to start ABA behavioral therapy, we’re not sure if this is as a result of the proton radiation, or from all her surgeries, or if she’s not been exposed to normal school settings because of her cancer, because of all the surgeries because of all the stays at the hospital or because of the pandemic. But the therapy is helping, and we’re hoping that with some school rolling in September, that she would feel more aggravated.
I mean, I’ll just add that, you know, puts things into perspective, for sure.
So, if I told you that I have a 2.5-year-old daughter, who, you know, has a handicap who isn’t walking in certain delays, it’d be pretty devastating for me to say, but when I tell you that I have a daughter who has beaten cancer, and who, by virtue of that fact, is having trouble walking, I think we both say that with, with a big smile on our faces.
We are so thankful to all the many doctors and therapists that work with Ellie, every single day because we wouldn’t be here without that, and Ellie’s just made so much progress over the course of the over the course of the last year, and that’s all due to that. And certainly you as well
We wanted to share with other parents, how it’s very important to be proactive, and to advocate for your child, if we didn’t advocate for that initial MRI on a Saturday night, we don’t know where we would be right now.
You know your child better than any of the doctors, you gave birth to your child, you brought up your child’s, you know their symptoms, you know what they’re like on a regular day. And even though you’re not a medical professional, you can tell the doctor exactly what you think, and what tests should be done. And they should be listening to you too, especially when your child can’t advocate for themselves, because they’re so little.
It’s important for everybody in the family to have therapy to talk about it to be as transparent as possible so that you can talk about your feelings.
We have two other boys, and we were fortunate enough to be put in touch with the making headway Foundation, which gives support to families battling, bring pediatric brain cancer and spinal tumors. And even in the height of the pandemic, we were able to set up therapy with a play therapist. It’s important to give time to everybody in the family and appoints it was really challenging during the pandemic to be split up when only one of us can sleep in the hospital with Ellie, but there was a plan in place for the other half of us to be with their other children. And it kind of forced us to be with them and to give them the time and to talk about what was going on with Ellie, and to celebrate those happy moments and the birthdays and the birthday parties and things like that.
Make sure that we were approaching the situation head-on, so that they really understood the gravity of the situation, we’ll be doing it in a way that was appropriate for their age group. So, we came up with, you know, different stories and different artifacts to sort of explaining what a tumor is and what cancer is. Because we wanted them to hear it from us, and nd we knew that if they didn’t hear from us, they hear from you know, one of their friends in school or something else. So you know, the transparency, even with the young children, was important, and I think the therapy was crucial. And we let go of some of those reins and some of the control to allow the things that were a little bit less important for someone else to really help deal with those things,
It’s not a sprint, and you have to live day to day and as much research you want to do, and as much as you, as the parent want to treat and help and care for your child, you have to trust the doctors and hope that they have a plan and a protocol in place, and sometimes that plan might not go according to plan, but there are always alternatives. And you just ask about the alternatives and be there for your child and let the doctors take the lead.
So if I told you that I have a two-and-a-half-year-old daughter who you know has this handicap who isn’t walking, you know how certain delays would be pretty devastating for me to say.
But when I tell you that I have a daughter who has beaten cancer and who by virtue of that fact is having trouble walking, I think we both say that with a big smile on our faces.
Jonathan and I started the Ellie Ruby Foundation in Ellie’s honor, to help support other families with pediatric cancer. Our foundation is there to help with financial support, emotional support, with the research of pediatric cancer, and to also give recognition to doctors and nurses for all they do for pediatric cancer, so, if there are families who do need help, they can find us online at ellierubyfoundation.org and we can be a support system for them.