The mother who posted a heartbreaking photo of her five-year-old daughter’s final moments before she passed away from cancer is opening up about the decision to share it.
Zoey Daggett, from Fairport, New York, was diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG) in July 2016 after she took a fall at a park and was limping afterwards.
She underwent immunotherapy treatment that originally shrunk the cancerous cells, but they soon returned and no other drugs were successful.
In the photo, Benjamin Daggett is seen cradling Zoey on the couch while his wife Casey sits next to them, resting her hand on Zoey’s leg.
‘I shared it because even though it’s a painful moment, it’s a beautiful moment in our eyes,’ Casey told Daily Mail Online.
‘It was a kind of peaceful moment for Ben and me. This is our reality and we wanted to show people every side of it.’
Casey Daggett, from Fairport, New York, is opening up about her decision to share a heartbreaking photo of the final moments of her five-year-old daughter, Zoey, before she passed away from cancer on July 4. Pictured: Zoey, Benjamin and Casey Daggett
Zoey (left and right) was diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG) in July 2016 after she took a fall at park and was limping afterward
The tumor, called DIPG, is a very rare and highly aggressive form of cancer typically found in children between ages five and nine.
Only between 200 and 300 children in the US are diagnosed each year.
This type of tumor is located at the base of the brain and the top of the spine, but it is unknown what causes them.
The tumors put pressure on the area of the brain called the pons, which are responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.
Over time, the tumor affects heartbeat, breathing, swallowing, eyesight and balance.
Some of the first symptoms of the tumor are problems with eye movement, facial weakness, difficulty walking, strange limb movements and problems with balance.
Most people with this type of cancer only live for nine months following the first diagnosis, and some don’t even make it long enough to receive radiation treatment.
HOW TO SPOT A DIPG TUMOR
DIPG (Diffuse Intrinsic Pontine Gliom) is a malignant brain tumor that grows quickly and is likely to spread.
DIPGs are glial tumors, meaning they arise from the brain’s glial tissue – tissue made up of cells that help support and protect the brain’s neurons
They are found in a lower part of the brain stem called the pons.
The pons is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.
DIPGs account for 10 percent of all childhood central nervous system tumors. Between 200 and 300 children in the US are diagnosed each year, usually between the ages of five and nine.
The symptoms of DIPG usually develop very rapidly prior to diagnosis, reflecting the fast growth of these tumors.
The most common symptoms include:
- Problems with balance and walking
- Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision)
- Problems with chewing and swallowing
- Nausea and vomiting
- Morning headaches or a headache that gets better after the child vomits
- Facial weakness or drooping (usually one side)
Surgery to remove the tumor isn’t always an option due to the dangers of operating on critical areas of the brain. Radiotherapy tends to be the standard form of treatment.
The prognosis for DIPGs remains very poor, although a small percentage of patients survive this disease.
Only 10 percent of children with DIPG survive for two years following their diagnosis, and less than one percent survive for five years.
Casey said that, prior to the diagnosis, there were no signs that anything was wrong with Zoey – until July 2016 when she fell down at the park and started limping.
‘She fell at a park and she was limping like she broke something that was really, really bad,’ Casey said.
‘We eventually took her to the hospital because the whole left side of her body wasn’t working.’
A scan the next day revealed that Zoey had a brain tumor and, three weeks later, the diagnosis came back as DIPG.
‘We were in the hallway outside because Zoey was receiving radiation and we just thought: “Oh, cr*p”,’ Casey said.
‘We just thought: “Okay, this changes things”. We didn’t know what to do, where to go. We were told it’s pretty much a death sentence.’
Casey and Ben researched multiple clinical trials and emailed every trial they could find.
‘We were turned down from every single one. It was a really disheartening August and September,’ Casey said.
Eventually the family learned about an immunotherapy treatment trial taking place in Cologne, Germany and, after being accepted by the professor into the program they rented out an apartment and flew there in October.
The trial, which ran from the beginning of November until mid-December, begins with drawing blood from the patient on the first day of an eight-day period.
The blood gets pathogen markers with white blood cells. In the meantime, heat is applied to the patient’s tumor to help it shrink.
Finally, at the end of the eight-day period, the blood is put back into the patient with the hopes it will help them fight the tumor.
According to Casey, the trial was immensely successful.
‘The tumor was shrinking and Zoey was back to running fully with no side effects,’ Casey said.
‘She loved visiting the Christmas markets in Germany. We lived across the street from the Lindt chocolate factory so she loved going to visit there,’ she said.
The Daggetts returned home before Christmas and returned to Germany over the next three months – for a three-day period at a time – to receive treatment.
Then, in April 2017, they noticed that Zoey was limping again. An MRI showed that her tumor was growing back again.
‘The doctors told us the tumor was not responding to immunotherapy anymore,’ Casey said.
‘We knew there was a drug we could try, which we started in April but it didn’t work at all and Zoey had terrible side effects, including being really nauseous.’
DIPG is a very rare and highly aggressive form of cancer with tumors in the brain. Over time, the tumor affects heartbeat, breathing, swallowing, eyesight and balance. After initially being rejected from several trials, Zoey was accepted into one in Cologne, Germany. Pictured, left and right: Zoey with her mother, Casey
The trial involves drawing blood from a patient, giving it pathogen markers with white blood cells and then putting it back into the patient. Casey said that during the trial, Zoey (pictured) was back to her normal self
In June, Zoey ended up in the hospital with a high fever and that is when things started to go downhill, according to Casey.
‘At the end of June, she stopped walking, stopped talking, stopped eating,’ Casey said.
‘So we did some radiation, which helped bring her back. And then she stopped being able to go to the bathroom in December 2017.’
At that point, a scan revealed that Zoey’s tumor had spread to a different part of her brain.
In March 2018, the Daggetts tried another drug, but it didn’t work.
‘We had seen that it was effective with other kids but it wasn’t very effective with Zoey’s tumor,’ Casey said.
‘We think it’s like kicking a bear. The more you do it, it gets angrier and angrier, and this tumor was pissed off and just not going to respond.’
Then, in April 2017, they noticed that Zoey (left and right) was limping again. An MRI showed that her tumor was growing back again. Doctors told her parents the tumor wasn’t responding to the immunotherapy anymore
The Daggetts tried a drug in April 2017 but Casey said it just made Zoey nauseous, and another drug in March 2018 wasn’t effective either. Pictured, left to right: Zoey and Casey
In the last week of Zoey’s life, the symptoms started rapidly progressing. She stopped being able to use a straw, then she couldn’t talk, followed by not being able to walk.
Casey said that Zoey slept almost straight through from Monday evening until she passed away on Wednesday, July 4.
‘I woke up that morning and I just started bawling my eyes out and I told Ben that I could tell this is just going to be the last day,’ she said.
The Daggetts spent the day watching movies – first was Mulan, then Ghostbusters, then Harry Potter and the Prisoner of Azkaban – and singing Disney songs.
‘She always used to tell me to stop singing so I was doing it and hoping she was laughing inside,’ Casey said.
It was at that moment that one of the family’s in-home nurses, Susan, asked Casey if she wanted a photo.
‘I had seen a handful of families sharing moments and originally I didn’t think I was going to share it,’ Casey said.
‘But I thought: “I want a photo like that taken”. I want those moments captured so I can remember them forever even when my brain is gone.
‘We were lucky enough to keep Zoey off of steroids, so she was her same size and she was just herself when she passed.’
The family said they spent Zoey’s final day watching all of her favorite movies and singing Disney songs, hoping she was laughing inside
Casey said she hoped that by sharing the photo, which she called ‘the quiet before the storm’, it could give others hope. Pictured, left to right: Casey, Zoey and Benjamin
The Daggetts have shared updates on their daughter’s journey on a Facebook page titled Zoey’s Fight and posted the photo to the page the day later with the dates of her wake and funeral.
‘Zoey is going to be shared with the world. Her love and light have been abundant and we will continue to pay it forward and share love and light with the world,’ they wrote in a caption accompanying the photo.
Casey said she hoped that by sharing the photo, which she called ‘the quiet before the storm’, it could give others hope.
‘Our path and our mission is to spread love and to spread it forward,’ Casey said.
‘Zoey would share food, share her toys, share chewing gum. She was full with love always even when she felt like utter poop. Still her happy, loving, giggling self.
‘And we just want to be able to help others because that’s what our kid would have done.’