Danielle Hughes's Medical Fund
Some of you already know the challenges that Danielle has had to endure. Others know something bad happened because they've seen heart felt messages on social media, but they don't know the whole story. Below is the most complete description of her fight that we’ve ever put together. Ultimately, we’re hoping that you’ll empathize with us and donate a few dollars to help tackle her medical bills.
Danielle had her first brain surgery in 1999 when she was just eleven years old. The pathology of the removed tumor indicated clear cell ependymoma, a grade I tumor as classified by the World Health Organization (WHO). Fortunately, this is the lowest grade classification for an ependymoma tumor.
She had an MRI at least once every twelve months for the following five years. After the fifth year scan came back clear, Danielle was given a clean bill of health and told the problem was behind her.
This was followed by about fifteen great years. She married this incredibly handsome guy named Bob, and gave birth to an incredibly beautiful baby girl named Alida. Everything was great (especially this guy Bob).
Her story took a dramatic turn on December 18, 2015 when she started having seizures at work. We remember her complaining about minor numbness for a few weeks before the seizures started, but we didn't think that much of it. That night in the emergency room we learned about the first recurrence.
On December 28 we visited Dr. Michael Sisti at New York Presbyterian Columbia University Medical Center. His initial reaction was that the tumor had to be removed surgically, but that we had a few months to get other opinions. We wanted to consult the surgeon who removed the first tumor, Dr. Peter Carmel, but we never got the chance. On December 30, Danielle had a seizure while on anti-seizure medication.
Dr. Sisti moved mountains and got her into the hospital that day. Her second brain surgery was on December 31. It was a success! The tumor was fully resected, and Danielle was on the road to recovery. At least that’s what we thought.
A week later the pathology report came back. This time, the report indicated anaplastic ependymoma (grade III). This is the highest grade ependymoma tumor. Surgical resection alone wasn’t enough this time. The plan moving forward was to have radiation therapy five days a week for six weeks.
Her first post radiation scan was in April 2016. Her neuro oncologist told us the scan was clear, and put us on a six year plan: scans every three months for the first three years and every six months for the following three years. Danielle was on the road to recovery. At least that’s what we thought.
Evidence of a third recurrence was observed in the very first follow up scan in July. We would end up tracking the growth of the tumor every month until December 2016 when she started having seizures again. We should mention that we tried to ‘restart’ our lives after the second surgery, and relocated our whole family out-of-state. You could imagine the insurance fiasco that ensued when we tried to use the same doctors back in New York.
We met Dr. Neil Malhotra at the Hospital of the University of Pennsylvania in January 2017. We knew after one consultation that this was our guy. Her third tumor was resected on February 16, but this time there were complications. Because the radiation made the blood vessels in Danielle’s brain friable, she suffered a stroke during the surgery. She lost control and sensation on the left side of her body. Also, it’s worth mentioning that the cancer cells remained anaplastic ependymoma, but they did not get more aggressive. This is a good thing for her overall prognosis.
After a few days in the hospital, Danielle was sent to an inpatient rehab center for three weeks. She was making incredible progress! She could only move one third of her left thumb immediately after the third surgery, and was walking with little assistance near the end of the three weeks. Danielle was on the road to recovery. At least that’s what we thought.
She was rushed to the hospital the day before she was supposed to come home. One of the ventricles in her brain became trapped and filled with fluid, a condition called hydrocephalus. The fluid filled ventricle coupled with brain swelling that persisted from her third brain surgery caused a midline shift of her brain.
An external ventricle drain (EVD) was installed during her fourth brain surgery on March 17, 2017. The plan was to install the drain, remove some of the blocked fluid, and then remove the drain once the ventricle began to drain naturally. Danielle was on the road to recovery. At least that’s what we thought.
A CT scan performed the day the drain was scheduled to come out revealed the ventricle was swelling again. Danielle needed a fifth surgery. This time, a permanent drain called a VP shunt needed to be installed. Basically, it’s a tube and pump assembly that drains fluid from the ventricle to her stomach. The fifth surgery was performed successfully on March 24. Danielle is on the road to recovery.
So what's next? Danielle is living with Alida at her parent's house while she goes to outpatient rehab for the stroke. She continues to make incredible progress despite the setbacks. She also has monthly visits with neurosurgeons, neurologists, and neuro oncologists indefinitely. Our hope is that she’ll have a full recovery from the stroke, and that the anaplastic ependymoma cells don't form another nodule, or tumor.
We're launching this campaign to raise funds to pay for the medical bills that have racked up over the past year and half. Please consider donating some extra money to help us reduce this burden.
The Hughes Family
First, I'd like to thank you all again. It's hard to imagine how we would have coped with the financial stress of her medical bills without all of your generous donations (did I mention that you shouldn't donate any more money? Because you shouldn't. This is just an update. NO MORE MONEY!).
I made a little video documenting Danielle's battle with brain cancer and wanted to share. It should be attached to this update...Hopefully it works!
Thank you all again for everything!
Danielle is doing really well all things considered. She’s walking around with little assistance from others, and her physical therapists see no end in sight to her recovery. Aside from her vision, which hasn’t improved since the stroke, everything is trending in the right direction. We have a lot to be thankful for.
If there was a physical list of things for us to thank God for, all of you would be at the top. It’s impossible to explain exactly what it’s like to go from terrified and depressed one day, to overwhelmingly happy the next. We jumped from one end of the emotional spectrum to the other. Danielle and I never expected this kind of response on the GoFundMe campaign. We are totally humbled and sincerely grateful for all your generosity.
As of April 22, 305 people raised over $25,000 in just eighteen days. That’s UNBELIEVABLE! Thirty-five of those people (11%) donated anonymously, and an even greater percentage of people who donated have never met us. I hope this update finds you, anonymous angels, and I pray that you feel even a fraction of the warmth and blessing that we’ve experienced. Thank you.
For those of you who do know us personally, what were you thinking?! All joking aside, thanks for looking past ALL of our flaws and helping us out. Danielle and I will do everything in our power to try and make it up to you. This experience has changed our entire perspective on life, family, friends and many other important things. Thank you for being you. Thank you for your presence in our lives. Thank you for your impact on us and all those around you. You’re incredible people. We’re extremely lucky to know each and every one of you.
So, what’s next? Danielle has her first post-op MRI on May 2, and then appointments with her neuro-oncologist and neurosurgeon later that day. We’re praying for no cancer and a possible path to recovery of her vision.
We’re not stopping here. We’re going to live the rest of our lives thinking about this experience and drawing from it whenever possible! More updates to come as more information becomes available. Thank you again from the bottom of our hearts. Thank you!
The Hughes Family