In just 224 days, Deb Fuller went from being a normal mom of two, to a mom who had lost one of her children to pediatric brain cancer. It’s normal for us to think the really bad things in life won’t happen to us. That’s how we’re able get up each morning and face whatever the day may bring. But sometimes the really bad things do happen and they’re worse than we could ever imagine. How does someone still find hope when cancer takes it away?
On January, 23, 1998, Hope came to the Fuller family from South Korea at just 7 months old. It was on this day that Deb, her husband Jay, and their son, J.D. welcomed Hope into their lives and became a family of four. They refer to this as “Gotcha Day,” and would continue to celebrate it each year moving forward.
As she grew up, the Fullers watched as Hope’s talents and passions grew with her. She loved, swimming, running, and makingmusic. A big fan of Taylor Swift, Hope got involved in many musicals, one of which inspired her favorite role as Mulan. The last role she was able to play was in the Summer Children’s Theatre’s production of “Beauty and the Beast,” which was in July 2009. That summer, the Fuller family’s lives were changed forever.
Deb remembers, “Her most amazing quality though, was her huge heart and concern for others. She held several lemonade stands to help the homeless, the local food pantry, and even her family members if they needed help. Ironically enough, she also was generous enough to cut off her beautiful, black hair to donate it to girls under the age of 18 who had lost their hair from cancer treatments.”
In the summer of 2009, Deb started to notice that Hope was having issues with balance and drooling. Deb decided to take her to the doctor when Hope said, “Umm, Mom, my face has been numb since school got out.” Deb didn’t really think anything was really wrong with her, but decided that since they didn’t know her entire birth history, it would be wise to get it checked out.
“The first doctor we saw was on July 27th, 2009,” Deb recalls. “He said that he was 100% sure she had Bell’s Palsy and that an MRI wasn’t necessary, but that he’d humor me and order one. He was super condescending.”
If you’ve ever been in for an MRI, you’ve probably noticed that techs don’t tell you much after you’ve had a scan. It’s not their job to interpret results, and the doctor who ordered the scan is customarily the one to give bad or good news. Deb experienced something completely different. “The man who did Hope’s scan was scared and visibly shaken at what he had seen. He even walked us all the way out to our car.”
That’s when the doctor asked Deb and Jay if they would be willing to take Hope to the Mayo Clinic, which they agreed to. “No one mentioned DIPG there. They just said that there was a mass in Hope’s brain and that they would be in touch with us in a day or so. That’s it. That’s when I decided to call a friend from church whose son had a brain tumor and had been treated at Children’s Memorial Hospital in Chicago.” Deb’s friend was able to make a few calls and got Hope in to see the neurosurgeon the next day.
When the Fuller’s arrived at Children’s Memorial Hospital of Chicago they met with a neuro-oncologist. Deb remembers, “All the while, Hope didn’t even seem to notice where she was or what was happening. She was complaining that she was hungry and that she wanted to go home and was texting with her friends.”
Then, Dr. Goldman (or as Deb calls him, Dr. Stew) came into their room with his nurse, Monica. Monica introduced herself and asked if Hope would go take a look around the place, get weighed, and have a snack. “I started to shake and my heart sank. I knew that it was just a tactic to get Hope out so they could talk to us. Hope looked so adorable and normal as she hopped off the table to go with Monica.”
Dr. Stew said the words that no parent should ever have to hear. “He said it was the most difficult conversation he ever had to have with parents, and that Hope’s diagnosis was the worst one possible. He named the tumor, but I don’t know that I heard it.” It’s a name that’s become all too familiar for the Fuller family: Diffuse Intrinsic Pontine Glioma. It’s a tumor that grows on the brain stem, which makes it completely impossible to operate on. There is no cure.
“Dr. Stew was so kind, gentle, and honest. He said there were no known survivors, and in all likelihood, Hope would die in the spring of 2010, approximately 9 months later. He then started to outline treatment options and it was like when the teacher talking to Charlie Brown in ‘The Great Pumpkin.’ ‘Wah wah wah.’” Deb says that she was in total shock and denial. There was no hope.
Understandably, Deb and Jay had many questions, but Deb specifically recalls her son JD’s reaction: “JD could not listen to anything. Within minutes he wanted to know how long she had. It became his constant worry. It was like he needed a date. He asked this question constantly of us throughout the next 224 days. He became Hope’s protector. He truly put his life on hold and spent the vast majority of his free time with her. There isn’t anything he didn’t do for her. From helping her dress, to feeding her, to driving her places, to watching ‘gross girl TV’. He loved her with his whole heart and soul.”
At first, Deb and Jay made the decision not to tell Hope she was dying. “She was told just enough to help her see the importance of treatment without scaring her.” This was a controversial choice, and it’s true that not every parent would do things this way, but decisions like this are very personal and should be respected. “Hope knew it was a brain tumor, but in her eyes she’d be better once treatment finished in about 6 months, so that’s how we [approached] it. We didn’t tell her she would die until later, when things got really bad.”
Deb recalls very little the days right after Hope’s diagnosis. “We had family pictures taken very quickly because the doctors told us that the steroids would start to cause the changes physically sooner rather than later. We also had to cut her hair because it was so long and thick that they couldn’t fit the radiation mask over all of it and get a tight enough fit. I also remember that I cried almost nonstop when Hope wasn’t around. I begged God to take me. I prayed for a miracle. I hoped for the best, but I expected the worst.”
Just 12 Years Old
It’s hard to imagine all this happening to a 12 year-old. Deb recalls how much of a trooper Hope was. She received treatments every other day, and went to a clinic on some off days, in addition to oral chemo at home daily. The treatments started to impact Hope’s education which annoyed Deb at first. “I was really mad the first time we met the radiation oncologist and Northwestern Medicine because she basically told Hope that since she had DIPG, school was a waste of time and she should only do what she wanted, when she wanted.”
Despite her initial annoyance, the nurse’s words eventually proved true, “I’d say around Labor Day, we were like F-it, who needs school anyway?!” Instead of going back to school after treatments, Deb, Jay, JD, Hope, along with friends and family would try to do something fun if she was feeling okay. “We did Millennium Park, Willis Tower, Navy Pier, a couple of museums. We took the water taxi on nice days and shopped. We went to see at least 3 musicals. We did anything we could think of to make a memory and, as she said, make lemonade out of lemons.”
The Fuller family mantra became, “Fake it until you make it.” Deb says, “I was always afraid that if I accepted that Hope was dying, like the doctors said, then maybe God wouldn’t give me a miracle, but, the reality was that God hadn’t intervened or provided miracles to any other kids with DIPG. There were none. Not one long term survivor.”
Enduring the Unexpected
“There were a lot of horrible things that I never thought I would ever have to experience during this time. Watching my beautiful daughter gain over 100 pounds and lose her ability to walk and do all the things she had done was excruciating. Watching the pain in JD’s eyes and seeing the fear he felt was just devastating. It’s hard to think about a worse thing happening. Everything that happened could qualify as the worst thing to happen to us.”
On February 2nd, 2010, Hope’s tumor started to bleed. Since they could not operate on the tumor, there was not much more they could do after the bleed. This then lead Deb and Jay to sign the third and most restrictive version of the Do Not Resuscitate waiver (DNR). “We made that decision, signed the DNR, knowing from that day on, we were just waiting for her body to quit.”
Hope spent the last few weeks with her eyes closed and not communicating much. Then, on March 7th, 2010, Hope ‘woke up’ and was able to communicate. “She was so afraid to die. She had me get JD, her best friend Grace, and her dad in the middle of the night. We were there for hours just laughing, and crying, and telling her it was okay. Telling her that if she was tired, that she could go. Telling her that we would be okay and that we would miss her. That it would suck, but that we loved her so much, that if she was tired and she was ready, then so were we. She just sobbed. We sobbed. Then, it was over.”
“Burying a child puts all of life’s events out of order. Not only do I grieve her loss, but I grieve the loss of all her potential. I will never see her graduate, go to prom, date, get married, have children, become a nurse or doctor or the next (albeit Asian) Taylor Swift. I am not the same person and many find me hard to be around. Our battle did not end when Hope died, it may have just begun. My son has no siblings to share his life with, no one to run to when I, or his father, start to lose it.”
In the community where the Fuller’s live, there’s a 5k every summer called the “Run for Hope” to raise money for a pediatric cancer foundation called The Cure Starts Now. There have been several events for the pediatric cancer foundation, St. Baldrick’s, where individuals shave their heads to stand in solidarity with the children who have lost their hair to cancer treatments. Deb shaved her head in September of 2011 at the St. Baldrick’s Momma’s Shave for the Brave. Jay and JD both shaved their heads at respective St. Baldrick’s events as well, along with several of their friends and family members, and Hope’s friends. The community has raised thousands of dollars for various pediatric cancer foundations.
“Hope was so loved. We gave her the best care and treatment and she died in peace, not in pain. We try every day to keep her memory alive, but everything we do now in the area of childhood cancer research, is for someone else’s child.”
Insights from a Mom Who Lost Her Kid to Pediatric Cancer
There are several things that Deb wants the world to know about being a cancer mom:
Things can change in a second. “The night before Hope was diagnosed, I wasn’t a cancer mom either.”
Adult cancers and childhood cancers are not the same. “Kids don’t get cancers caused by lifestyle choices like many adults. Very little is known about the cause of childhood cancers. I want people to know that cancer is the leading cause of death from disease among children and adolescents in the U.S.”
An adult who dies from cancer loses, on average, 17 years of potential life.
A child who dies from cancer loses, on average, 71 years of potential life.
If your child has cancer, put hope in the passenger seat. “If you ever have to hear that your child has cancer, which I pray to God that you won’t, my advice is to put hope in the passenger seat, and reality in the driver’s seat as you navigate your way through the grief process. It never ends, it just changes directions, becomes more palatable and more difficult over and over again.
Childhood cancer research needs more help. “I want people to understand that these children are desperate for help. We are an embarrassment to our children’s legacy if we accept that 4% of all the federally funded research is enough for all the childhood cancers.”
Helping to fund childhood cancer research is painful and frustrating. “The vast majority of funding comes from the grassroots efforts of parents who fight and fight to make a difference, and in many cases, it is too late for their own kids. Hope died from DIPG. It is completely unacceptable that there have not been new treatments developed in over 50 years for this tumor.”
Childhood cancer is not rare, and it is critical that we help the generations that could one day help care for us in the future. Thank you to Deb, Jay, and JD Fuller for sharing your story. Thank you, Hope, whose story could one day help another family facing an impossible diagnosis.
In loving memory of Hope Alizah Kimlee Fuller.
June 26th, 1997- March 10th, 2010.
Always Have Hope.
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