After riding a months-long emotional rollercoaster of countless medical tests, doctor’s appointments and then a devastating diagnosis, the Brown family has finally learned the real reason why their youngest member, 10-year-old Jada, has been so sick - and it’s a good news/bad news situation.

It turns out Jada’s original diagnosis, of a type of blood cancer called Polycythemia Vera, was incorrect. That’s the good news. That kind of cancer would have shortened her life considerably.

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The bad news is that Jada does have a very serious illness. It’s not cancer, and it’s manageable, but there’s no cure.

And it will change her life forever.

At the end of May, specialists at the Mayo Clinic in Rochester told the Browns that Jada has a rare genetic bleeding disorder called von Willebrand Disease, or VWD. Its symptoms are very similar to those of the cancer she was first diagnosed with, which explains that early misdiagnosis, but VWD is treated differently and has a much better prognosis.

Mike and Carla Brown, Jada’s parents, said in an interview at their Detroit Lakes home last week that the family felt a conflicting mix of joy and sadness when they found out what was really going on with Jada.

“At first, when we thought she had Polycythemia Vera, it was so traumatizing… that was very scary, because at most she’d have 24 years with that,” Carla said. “It was such a big relief when we found out she did not have that.”

“When we all found out about the von Willebrand,” she continued, “they (Jada’s five older siblings) all said, ‘We can handle this, Mom. It’s not curable, but it’s treatable’ … So we’re happy it’s not the cancer, but also sad because her whole life is changed. She can’t be a normal child.”

As a person with VWD, Jada will always have to be very careful to avoid getting bruises, scrapes and cuts. She can’t play kickball or other contact sports with her classmates, or be a part of regular gym class activities, and she can never be an active member of gymnastics or dance, which she would love to do.

VWD causes a person to bleed longer than normal, as the blood doesn’t clot like it should. This means Jada will never be able to take aspirin or other blood-thinning meds, and there are certain foods and drinks she has to avoid, too, such as green tea. She needs to wear a medical alert bracelet, and must always have a special nasal spray close by in case something happens that causes her to bleed, either externally or internally - the spray is the only thing that will stop the bleeding within a reasonable amount of time.

In addition, Jada has to get a lot of rest; her doctors say 12 hours of sleep a night is best. She gets tired easily, and when the weather is too hot or too cold, she can spend only a couple of hours outside. If she ever needs any surgeries in her lifetime, or any dental work done, she’ll have to go to Mayo or another specialized surgical center for it, because she’ll need a specific treatment beforehand to ensure her blood will clot properly.

A disease like this would be difficult for anyone to have to deal with, but for a young child it’s especially hard. For Jada, it’s been frightening and frustrating.

“It’s not fair,” Jada said with tears in her eyes. It’s hard for her to talk about, but she does say she wants to be able to play like other kids, and she feels worried a lot of the time. Normal kid stuff like scraped knees and nosebleeds are serious business for her now, and that scares her.

Still, on the day of the interview, Jada was feeling good, and she looked happy and healthy. She and the rest of the family are trying to look on the bright side. There are plenty of things Jada enjoys that can still do. She likes to read, for example, and she dances along to YouTube videos at home. She also loves to hang out with her best friend from across the street, and to make slime. She has a whole big box full of slime that she’s made, in every color and sometimes even with sparkles. She plans to sell some of it the next time her parents have a rummage sale.

She’s been feeling better lately, on the whole. There continue to be some days when dark circles will set in around her eyes, and she gets tired, but she’s having more good days again now, when the color returns to her face and she laughs and plays just like any 10-year-old kid.

For now, Carla said, the family is continuing to monitor Jada’s condition to make sure it doesn’t worsen. As long as things stay the same or are improving, Jada will have blood work done every three months in Detroit Lakes, and will visit the Mayo Clinic once a year to check in. If things get worse, she’ll have to go in more often.

Either way, Carla said, “it’s going to be a lot of doctoring. It’s a long road ahead.”

And they’ve already got a long road behind them.

The long road to a diagnosis

It’s likely, but not certain, that Jada was born with VWD. No one knew it until recently, of course, but looking back on it now, her parents said there were signs of the blood disorder all along. She’d get a small cut on her finger and it would take 45 minutes for the bleeding to stop, only for it to start up again the next day; she’d barely bump her leg on a table and a bruise would immediately appear, and quickly spread.

In 2012, Jada had a tooth pulled and the dentist struggled to stop the bleeding. After that, the Browns took Jada to a doctor to have some tests done. Those tests revealed irregularities in Jada’s blood, but the family was told not to worry, that it wasn’t anything bad and Jada would probably grow out of it.

But about three years ago, Jada started getting sick. She’d often feel tired, weak and sometimes dizzy. She’d run a fever six to eight times a month. She got frequent headaches, had those dark circles under her eyes and her skin looked pale.

At first, doctors thought Jada had the flu, or “some kind of bug,” Carla said, and after awhile, as the symptoms kept coming back, they suspected she had a weak immune system that made her more prone to illness.

It wasn’t until March of this year that they realized something more serious was going on. Jada tested positive for the flu, pneumonia and bronchitis that month, and Carla said Jada’s provider, Tammi Fuchs, a nurse practitioner at Essentia Health-St. Mary’s, told her she was really concerned.

“She said, ‘There’s definitely something wrong,’” Carla recalled. “And she was so good about pushing for more tests and appointments. I’m so glad Tammi caught this… she went full-bore with everything.”

Through those efforts, they found evidence of the blood cancer Polycythemia Vera, and Jada’s case was referred to St. Jude Children’s Hospital for further review. St. Jude’s confirmed the diagnosis as best they could without seeing Jada, and recommended that she visit a specialist closer to home. The family had Jada’s files sent to Mayo Clinic.

“By this point, she was pretty sick,” Carla said.

Over the course of three separate multi-day trips to Mayo, Jada underwent scores of tests to determine the cause of her symptoms. Between March and May, she had numerous blood tests, a CT scan, X-rays, an echogram, EKG, bone scan and others. Ultimately, the specialists at Mayo found the real cause of Jada’s illness, and broke the good and bad news to the family that it wasn’t cancer, it was VWD.

The toll it’s taking at home

Jada was going to so many frequent medical appointments, and was so sick so often, that she went down to half days at school. Carla decided to take a leave of absence from her job at Essentia Health’s Oak Crossing assisted living facility to take care of her. To keep the bills paid, Mike started putting in extra hours at his job at Mark’s Fleet Supply in Perham. But with all the additional medical expenses, it’s been a struggle.

The ordeal has tested the family not only financially, but emotionally, as well.

“There were many nights when I was crying,” Carla said. “Mike doesn’t like to show emotion, but I’d find him crying… The kids would say things like, ‘Why Jada? It should be me.’ First thinking it was cancer, then finding out it was von Willebrand Disease - it’s been a lot to handle.”

Fortunately, the family hasn’t had to go through it alone. Their friends, employers, Jada’s school, the local community and even total strangers have reached out to help.

Carla said Roosevelt Elementary has been “very understanding” of the family’s situation, and even held a pie sale to raise funds for them. The event raised more than $800.

“That was very generous of them to do that,” Carla said. “That helped us to go down there (to Mayo Clinic) the first time.”

Carla’s close friend, Leslie Flanders, has been a big source of support for the family, too, starting a GoFundMe site to help raise funds for the Browns’ medical expenses.

Another woman that the Browns didn’t even know before, Sherrie Wulf of Perham, heard about Jada’s condition and started a Facebook fundraiser for her, called Jada’s Journey Fundraiser, where she sells specialty bags with a portion of the proceeds going to the Browns.

“We don’t even know that woman, but she’s so sweet,” Carla said.

Carla hopes that by spreading the word about VWD, more people will become aware of the disease, and more parents will notice the signs of it in their children, at earlier ages.

“Maybe getting the story out now can help another family if they’re dealing with this, with their child bruising and bleeding and they don’t understand why,” she said. “If your kids are showing symptoms of something being wrong, get it checked out. It does not hurt to have tests run.”

Want to help out?

Make a donation on the family’s GoFundMe page (search for Jada Brown at gofundme.com), or visit the Jada’s Journey Fundraiser Facebook page.

 

*The print version of this story that appeared in the Wednesday, June 19 Detroit Lakes Tribune mistakenly named Carla Brown as Cindy Brown. The Tribune regrets the error.