Cooper City High’s Dr. Jones Fights Rare Blood Cancer

Photo Credit: CAROLINA MARTINEZ

BY KYRA BACON

Claudia Jones, a teacher at Cooper City High School, was sitting on the sofa and watching reruns of Seinfeld again. Lately, she had been feeling very exhausted, and watching TV had become routine. Just as her eyelids had begun to feel heavy, there was a loud ring of the phone. Jones reluctantly got up and wandered over to her cellphone lying on the counter. The caller ID was unmistakable. It was her doctor, the very one she had seen just a week before. He’s not supposed to call for another 2 weeks, she had thought. Something must be wrong. She took a deep breath and answered the call. “Mrs. Jones? The results of your test are back and they’re more serious than we thought. We need you to come in right away. We think you might have a rare blood cancer called amyloidosis.”

After being informed of her critical condition for the first time, Jones was in a state of disbelief. The doctors had assured her that her health condition was nothing serious. They gave her medicine to try to get her levels back down, and were certain that because of her young age and great shape, she would be back to normal in no time. They had no idea how wrong they were.

“I was in disbelief when I first found out,” Jones said. “They told me I would be fine so I kept thinking in my head it was nothing. But when they called me early for my follow-up, I knew something was up.”

It all started last year, when Jones began to feel less and less like her usual energetic self. But during Spring Break, her life really changed. While watching TV one day, she suddenly realized that her heart was beating abnormally fast and she felt faint. Jones had a heart condition before, but she had gotten it taken care of, so she assumed it was just a momentary relapse and didn’t think much of it. It wasn’t until break ended and her legs began to swell, a symptom associated with infections or other health problems, that Jones began to have doubts. When she went to the doctor, her EKG levels had shown that she had a minor heart attack and her cholesterol was over 300.

“It wasn’t until the doctors told me that I had a heart attack that I began to think more seriously of that day during Spring Break,” Jones said. “I had gotten my heart problems taken care of before, so I thought it was normal for me, but it turns out that episode was really a heart attack.”

Jones knew it was time to take charge of her health. Advised by her doctor, she went to see a nephrologist and had more tests done. The results came back with more bad news. Three thousand grams of protein were found in her urine sample at first, compared to the average person, who should have none. The last tests she took showed that her protein levels in her urine went up to 7,000g. The nephrologist did a kidney biopsy under the impression that her kidneys themselves were fine, but something was inside them that wasn’t supposed to be there. Little did he know, this would be the key to her diagnosis. The disease was confirmed after Jones came in barely a week later to do a bone marrow biopsy.

“The blood takes my protein and deposits them wherever they want, and they chose my kidneys,” Jones said. “It could have been my head, heart, lungs or liver, but by the grace of God, my kidneys got it.”

Her disease, called amyloidosis, is a rare type of blood cancer that is environmental rather than hereditary. Only 3,000 people per year are diagnosed with amyloidosis in the U.S, so, because of it’s rarity, there are only three treatment centers in the nation: one in Boston, MA; another in Slone Kettering, NY; and the last in Rochester, MN. The disease affects the protein levels in a victim’s body, disconnecting the chains that are normally shaped like a Y. These free-floating protein strands are then carried by the blood and deposited elsewhere. The normal treatment for this disease is a complicated procedure called stem cell transplant.

“Our advice for patients is to do what Ms. Jones did,” Boston University Amyloidosis Doctor David Seldin said. “When you have a rare disease, learn everything you can about it and travel to a center of excellence to get guidance about treatment options.”

Jones knew that her best option was to go to the Boston treatment center, a medical facility affiliated with Boston University. She spent three days getting various tests done there to see if she was a candidate for their treatment program. Luckily for her, they knew just how to help her. But her bad luck hadn’t ended yet. Her insurance company forbade her from going, claiming the hospital was out of network, and told her to find one nearby. After Jones sent many letters of protest and pleas, the insurance company gave in. Jones, who had reserved a spot at the University of Miami Sylvester Cancer Clinic just in case, cancelled her reservation and booked a flight to Boston.

“My insurance didn’t realize how serious and rare my condition is,” Jones said. “I was so mad when they called back my approval, and I tried all I could to fight, but it didn’t work.”

Unfortunately, bad luck took a turn once again, and the insurance company rescinded their approval just six days later. Jones wrote more letters and even called the congressman, carrying her case all the way to the top, but to no avail. Eventually, Jones realized Boston was not a possibility and cancelled her flight, room and appointment in the hopes that UM would take her back. Luck seemed to finally be on her side when UM agreed to help with her unique condition.

The treatment plan was put into action as soon as possible. On Wednesday, September 25th, Jones said goodbye to her co-workers and students and got ready for the fight of her life.

The next day, Jones was given several shots to promote stem cell growth and on Friday, a catheter was put in her neck to connect to her heart artery. The following week, she had to sit for five and a half hours each day for three days straight as they pulled blood out of her catheter and froze it, along with the stem cells inside. On October 7th, Jones will receive chemo treatment that will kill the remainder of her blood cells, which has the unfortunate side effect of also destroying her hair follicles. After this, the doctors will unfreeze her blood and transport it back into her body in the hopes that the new stem cells will not become amyloids.

“They’re basically killing me and bringing me back to life,” Jones said.

For three months, Jones will have to remain isolated in a sterile environment to prevent risk of infection. Because her immune system will be entirely wiped out as a result of the stem cell transplant, she will have to be re-immunized as well as take extreme caution in her daily life. Her diet will have to be adjusted to eliminate uncooked vegetables, grains, dairy, cheese, fruit, unprocessed nuts, stir-fried foods and many more. Before Jones will be allowed to go home and adjust to careful surveillance there, she will be in remission at the hospital for 3-8 weeks.

“They tell me about my room soon, so I’m going to decorate it with cards, letters and pictures,” Jones said. “I want it to be as close to my lifestyle as possible.”

Photo Credit: CHEYENNE PINO

Even though Jones will have to be careful with who she comes in contact with for the next few months, she is anything but alone. Her daughter set up Claudia’s Cause at giveforward.com to raise money for treatment and daily life expenses. A fundraiser at Fox and Hounds Pub, a car wash and a bingo night were held over the summer in an effort to raise money. While there isn’t a defined goal for the organization, Jones hopes to make enough money to cover the treatment and feel as comfortable as possible with the changes in her life. Anonymous donations are accepted through the website or Facebook page.

“People I went to high school with, who I haven’t seen in 20 years, are donating to me,” Jones said. “I’m just so touched, shocked and grateful for all the help everyone has given me. Everyone has been so supportive and generous.”

Overall, Jones’ diagnosis of amyloidosis has completely changed her life. Before the procedures started and she was still working, Jones felt exhausted all the time. Her job teaching reading and learning strategies as well as being the support facilitator for ESE changed to a single role in helping out with ESE whenever possible. But however tired she was and however bloated and puffy her swollen legs felt, Jones was proud of herself for persevering and going to work everyday.

“I got to a point where I’ve done all that I can,” Jones said. “I’ve fought a hard fight and now there’s nothing left I can do. It’s out of my hands and my friends and family that are supporting me are praying and whatever is going to happen will happen.”