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February / March 2019

Family Faces NF with the Attitudes of

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Across the country, millions of families are forced to go through the struggle, hardships, and pains that come with dealing with a chronic illness. For families suffering from genetically inheritable illnesses, however, these hardships can become even more complex. Multiple members of one family can often be forced to battle the same disease together if the parents pass the genes for the illness down to their children.

The Candleanas of Stevensville are one such family with multiple members dealing with a condition called neurofibromatosis (NF). Three of this family’s five members have NF, and they all have slightly different complications and symptoms of the disease.

Despite years of doctors’ visits, difficult treatments, and uncertainties, they say learning to overcome the hardships that come with NF has only made them stronger.

Turn the page to read on about this family of superheroes...

Brent recovers from spinal surgery at Children’s Hospital in Philadelphia.

NF

NF is not just a hereditary condition, but has a likelihood of being passed on from generation to generation.

NF has been a part of Joyce Candleana’s life for as long as she can remember. As a child, she developed the disease’s quintessential markers: dark discoloration marks on the skin, called “cafe-au-lait” marks .

While skin blemishes may sound relatively innocuous, these “cafe-aulait” marks are dark, painless and can not be removed. Their peculiar French name, which translates roughly to “ coffee with milk” refers to their light brown mocha coloring. In her teens Joyce began developing “Nodules” which are tumors on nerve endings that can become unsightly and painful requiring removal. Joyce had to have some of these removed throughout her life, but aside from this, never suffered from other serious complications from NF. NF is not just a hereditary condition, but has a likelihood of being passed on from generation to generation. Most genetic conditions are recessive, meaning both of your parents must carry the disease in some form in order to pass it down. NF, however, is a condition inherited dominantly; if a child has just one parent with NF they have a fifty percent chance of being born with the disease.

Joyce’s father, who grew up in the rural south, also suffered from the condition, though, so little was known about it at the time that it was never officially diagnosed. Like Joyce, her father also displayed the unique “cafe-au-lait” marks and nodules across his body. While these marks can be painful, Joyce only had these tumors on her skin, leading her to believe that NF was more of a cosmetic condition. Because of this, Joyce and her husband Jim decided to have kids of their own and take the potential risk of passing the condition along. Ultimately, two of the family’s three sons would be diagnosed with NF; their first and third sons (Tyler and Brent) would have it, while their middle son Dylan, would not.

brain, surgery was completely out of the question. As Brent’s dad Jim said “the best surgeon in the world couldn’t have removed that tumor.”

The brain stem is located where the top of the spine meets the bottom of the brain which means that surgery could potentially cause the exact kind of damage they were trying to stop Brent’s brain tumor from causing. Because of the impossibility of doing surgery, Brent was forced to start chemotherapy at the young age of eight years. While chemotherapy can be very effective in treating tumors and cancers, it comes with a myriad of harsh side effects. Just as it attacks tumors and cancer cells, it also attacks normal healthy parts of the body (A list of common chemotherapy side effects listed in sidebar).

To make matters worse for Brent, the tumor failed to respond to the first, milder type of chemotherapy he was prescribed. In fact, the tumor actually grew instead of shrinking over the course of a few months. Now, he faced an even stronger type of chemo, with even more severe and stronger side effects. Brent, who was eight years old at the time, had to go in for chemotherapy every Wednesday, forcing him to miss two and sometimes three days of school every single week.

Brent’s father remembers, “By the time we reached Wednesday again, he felt the best physically, and then he would get wiped out again by more chemo. It was just heartbreaking to watch that happen to my own son.” Looking back, Brent says that going through chemo at the young age of eight “sucked,” but at the time, he didn’t feel as if he had much choice. Brent’s parents say that even that early age, he would rarely complain or whine about having to go through his treatments,

NF

While Joyce’s NF caused her “cafe-au-lait” marks and nodules, NF has the potential to cause a wide variety of other conditions and complications (See sidebar). Because of the wide variety of complications that can be caused by NF, Brent and his older brother Tyler were followed by doctors from a young age to check for dangerous and malignant tumors and other potential NF complications. To date, Tyler has developed the same marks his mother has, but never anything more serious. He also has ADHD, which is actually strongly correlated with NF. In 2011, everything suddenly changed for the Candleana family when the first one of them was discovered with an internal tumor rather than just the “cafe-au-lait” marks. Their youngest, Brent, had a tumor growing on his brain stem that had the potential to affect his fine motor skills, ability to speak, and, potentially, even his ability to breathe if it were to grow large enough. As the tumor was located deep in the

Symptoms & Complications

There are two types of NF; NF1 and NF2. Joyce, Brent and Tyler all have NF1, which is the less severe and the more common version of the disease.

The following symptoms appear in people with NF1: •Several (usually 6 or more) café au lait spots •Multiple freckles in the armpit or groin area •Tiny growths in the iris (colored area) of the eye called Lisch nodules and usually do not affect eyesight.

•Neurofibromas that occur on or under the skin, sometimes even deep within the body.

These are benign (harmless) tumors; however, in rare cases, they can become malignant or cancerous.

•Bone deformities, including a twisted spine (scoliosis) or bowed legs •Tumors along the optic nerve, which may cause eyesight problems •Nerve-related pain People with NF2 often also display the following symptoms: •Loss of hearing •Weakness of the face muscles •Dizziness •Poor balance •Uncoordinated walking •Cataracts (cloudy areas on the lens of the eye) that develop at an unusually early age •Pain from the enlarging tumors •Numbness and tingling of the fingers or toes

and even managed to stay polite to the hospital staff. Brent says he was able to keep his composure because it is “just how [he] was raised.”

Over the course of the next year, Brent lost his hair, appetite, and weight, something Brent’s family says was extremely hard to watch.

However, the tumor eventually began to shrink and stopped posing an immediate threat to Brent’s health, 15 whole months after Brent started the initial chemotherapy regimen. While the successful treatment of Brent’s brain tumor was a relief to the Candleana family, it did suggest that Brent’s version of the condition manifested itself differently than the rest of the family’s, and opened up the possibility that Brent would develop more tumors in the future.

The day Brent ended his first round of chemo, December 19, 2012, his mother Joyce would be diagnosed with breast cancer. While other forms of cancer are generally not caused by NF, Joyce says that her doctors suggested her NF increased her chances of developing the already common type of cancer.

Across the country, hundreds and thousands of families struggle with chronic illnesses. For the Candleana family, this struggle was multiplied as two of them had to fight against a chronic condition at the same time. And in this case at the same time, Joyce and her family also had to face the fear of her breast cancer. The Candleana family had little idea what the future would hold during this time, and called it “remarkably hard.” However, they knew they had no choice but to keep it together and fight.

After Joyce got diagnosed with breast cancer, Brent’s doctors discovered his second brain tumor. The Candleana family and the doctors treating them sprang into action. After finding out about the second tumor, they went back to Children’s National Hospital in DC, where Brent had his first chemotherapy treatment. Brent’s doctor this time would be the head of the Childhood Brain Tumor Foundation. Brent was now being treated by the man who actually wrote the national protocol for treating childhood cancer. The family says they didn’t actively seek out one of the best childhood cancer doctors in the country, and consider themselves very lucky that they were able to get him.

At Children’s National, Brent also started a new experimental type of chemo, one that only 25 or 30 children in the entire country were even allowed access at the time, called Selumetinib. This new type of experimental chemo is taken in pill form and can be taken from home, unlike the standard chemotherapy regimen that Brent was on before that required him to go into a doctor’s office weekly for infusions. This new experimental chemo even came with so few side effects that Brent was able to go to school the same day of taking chemotherapy. It did require extremely defined specifications for when it could be taken, and how long before and after Brent would be able to eat.

In 2015, Brent developed Scoliosis, or curvature of the spine, causing him back pain and affecting his ability to grow. The decision was made to surgically correct the Scoliosis to avoid any further complications. After surgery and a six-day hospital stay, Brent grew an astounding 2 inches and now has two titanium rods and 28 screws in his back.

NF Chemotherapy Can be Used to

Brent at age 5.

•Fatigue, Hair loss, Infection, Anemia •Nausea and vomiting, weight changes •Appetite and mood changes •Constipation and/or Diarrhea •Easy bruising and bleeding •Mouth, tongue, and throat sores •Nerve and muscle problems such as numbness, tingling, and pain •Skin and nail changes •Urine/bladder changes; kidney problems •Chemo brain affecting concentration/ focus •Changes in libido and sexual function

By the time 2016 came around, all of Brent’s tumors were deemed non-threatening, and he was finally able to go off the chemotherapy regimen. Brent now only had to go to the doctors once every three months, in stark contrast to the weekly doctors’ visits required during the height of Brent’s battle. In 2016, Joyce’s breast cancer also went into remission after 28 rounds of radiation therapy and a partial mastectomy. Less than two years ago, two members of the family were being treated for dangerous cancers and tumors inside their bodies. Now, for the first time in a while, the Candleana family’s health seemed to be leveling out. While they have little idea of what their futures may hold, they are happy to finally have some peace.

While the average person knows very little about the disease, and many have never even heard of it, for the Candleana family NF is a part of their everyday life. Joyce and her family think it is important to raise awareness about the disease and to advocate for proper social

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NF Community Support

In 2011, Chesapeake Bay Beach Club held an event called “Brent’s Bash” to help raise financial support for the Candleana family and to raise awareness about NF in general. Joyce says she was absolutely touched to see so many people in the community come out in support of Brent and her family.

treatment of those with the condition. Despite being rarely talked about in mainstream media and popular culture, NF is actually somewhat common. One in 3,500 Americans has the condition despite how rarely it is talked about. This makes NF more common than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay-Sachs combined. Yet, all these rare diseases attract significantly more public attention than the more common NF. Perhaps NF has received so little attention in comparison to the other more talked about rare diseases because of how differently the disease can manifest itself. For people like Joyce, NF is primarily a cosmetic condition, while for people like Brent, it has resulted in malignant tumors across the body. Joyce and Brent even have the same type of NF (NF 1) that manifests itself so differently, while NF 2 can come with a host of other symptoms. One person with NF might have an entirely different set of symptoms than another, making awareness for the condition more difficult.

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Brent got his learners this January and will turn 16 on February 3rd.

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Brent and his dad Jim.

Joyce is a heavy supporter of awareness for the disease partially because of the poor social treatment she has received over the years due to her small “cafe-au-lait” marks. She recounted social horror stories of strangers asking what happened to her skin, completely unprompted and leaving her feeling understandably uncomfortable. Once a grocery store clerk asked her what “happened to your face,” leaving her feeling singled out when she was just trying to buy groceries for her family.

Joyce doesn’t want her sons Brent or Tyler to ever feel that way and is glad that they seem to have handled growing up with NF’s cafe-au-lait marks better than she did. She also hopes that this article itself will educate people in the community about NF, and that it may lead to more respectful treatment locally. She says, “If just one parent sees this article and says ‘Hey look at this… this is what that kid from school you know has’ then we’ve just educated someone and I think that is really important.”

As of July of this year, one of Brent’s brain tumors reactivated, and he was forced to start chemotherapy again. Thankfully, Brent is still able to receive the experimental chemo treatment that comes with minimal side effects. His tumors responded to chemotherapy before, and the family hopes this one will too. With this type of chemo, he isn’t forced to miss too many days of school. Because of his NF, Brent has never really able to play sports like most kids. He has had to pursue other types of hobbies and loves to cook, now cooking most of the family’s meals. He says that he has a close knit group of friends that has helped make things a little bit easier

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Brent’s dad adds that while watching his family deal with NF may have been hard and frustrating at times, it has also been inspirational.

“If it’s true that ‘that which doesn’t kill you makes you stronger,’ then we’re a family of superheroes . There really is nobody I know stronger than us.” He says that his young son Brent is actually his hero, “You have to be the strongest person in the world to go through everything Brent has gone through…so yeah, he really is my hero.”

While Brent may be battling against a brain tumor right now, his doctors have said that they believe as Brent gets older, he might eventually outgrow this stage and stop developing tumors internally. Having dealt with Brent’s tumors for so long, the Candleana family remains skeptical and is unsure of what the future will hold. Regardless of what happens, the Candleanas exemplify superhero strength and will be strong enough to make it through whatever the future holds.

Pictured top: Brent and his brother Dylan, age 20.

NF

Pictured Bottom: Brent and his brother Tyler, age 23.

How You Can Help

At Children’s National Hospital, not only did Brent receive some of the best childhood cancer care in the country, but this new, experimental treatment cost the Candleana family nothing. Children’s National is a non-profit organization, and you want help by making a donation childrensnational.org.