For Diane Paradise, an anonymous stranger’s decision to bank cord blood has provided nothing less than a new lease on life.
The problems began as a lump in her underarm. Even after an early diagnosis called it a “fatty tumor” and a needle biopsy came back negative, Diane wasn’t convinced. Five months later, when she visited a surgeon, a second lump had formed, and it was clear things were more serious than previously thought.
Just 24 years old at the time, Diane was diagnosed with a rare form of Hodgkin’s disease on Dec. 28, 1994. Specifically, Diane had nodular lymphocyte predominant Hodgkin disease.
Six weeks of radiation and six months of chemotherapy didn’t kill her hair; it only thinned a bit. Unfortunately, she couldn’t avoid some of the treatment’s more painful side effects. As it does to so many, the chemotherapy induced nausea and vomiting. Another of the drugs gave her spells of bone aches and body pain that lasted a few days at a time. Although the radiation was mostly fine, toward the end a huge blister developed and burst in her underarm, leaving her with third-degree burns.
As much as she could, Diane wanted to avoid letting cancer treatments slow her down. She worked a full-time job and a part-time job, and also took night classes while undergoing treatment.
“I think a lot of that was fear,” Diane said. “I was afraid that if I slowed down, I wasn’t going to start back up.”
The treatments, and her commitment not to slow down, seemed to have worked. She went into remission, and would stay there for six years.
Even before the recurrence, 2001 was a difficult year. Diane had a very stressful job, and her mother passed away. By the time she went in for her yearly checkup, she had started to experience symptoms-including fatigue and night sweats-so she wasn’t surprised to hear the cancer was back.
But the diagnosis this time came with some unexpected bad news; there was no cure.
“It was the same type I had before, but this time he was telling me it was incurable,” Diane said. “It was a shock.”
It was now decision time. One doctor recommended a ten-month chemotherapy treatment and a bone marrow transplant. Hodgkin’s disease has no known cause, but it does have correlated factors, including exposure to manmade or environmental toxins. Chemo had worked, but it also introduced her body to high levels of toxic substances, and Diane wasn’t sure she wanted to go down that path again.
“I thought ‘Hodgkin’s is caused by toxins and it’s incurable,'” Diane said. “I’m just making it go dormant, how many times can my body handle chemotherapy?”
Diane opted instead to visit a clinic in Arizona to attempt an alternative medicinal route. The cancer went away for three years, until 2005, but Diane knew she was never in a true “remission” state.
[tweet_box design=”default”]The cord blood transplant that saved Dianes life was an outpatient procedure. #cordbloodawareness[/tweet_box]
“I can’t say I was in remission… it went dormant,” Diane said. “It just went back to sleep and wasn’t as active. It never truly went away.”
For several years, she used a combination of immunotherapy and integrative therapies incorporating vitamins, supplements, herbs, and a special diet. This was all done with the hope of it working. One of her friends even told her to make her own supplements. But she decided to make the most of the therapies that had been given to her instead. During this time, Diane met her husband, but about three months after the two were married, she suffered another recurrence.
Over the next several years, she would try a multitude of treatments, and suffer through another remission-recurrence cycle. When the cancer spread to her bone marrow, she was in a wheelchair to combat the extreme pain and avoid the difficulty of walking. She was on steroids from November 2010 through March 2011. After a recurrence in 2012, doctors said she was unlikely to survive a transplant, but she looked into it anyway.
It was then she discovered a clinical trial at Johns Hopkins University for which she fit the bill. Her options were a half-match bone marrow transplant or a matched umbilical cord blood transplant.
The cord blood transplant that saved her life was an outpatient procedure.
Diane got a “double umbilical cord blood stem cell transplant,” where the stem cells from two different donors duked it out for supremacy inside her body.
“It was basically a survival of the fittest,” Diane said. “Whichever one grafted was the right one for me.”
The infusion itself took just 20 minutes, prior to which Diane and her husband prayed with the chaplain. She felt great the day of, but quickly felt the effects of chemo and radiation treatments she’d taken in the week before the transplant to cleanse her body. She hit a low the week after the procedure when she developed an infection and dealt with “nonstop diarrhea.”
Her brother, husband, sisters and friends took shifts caring for her. Three times during the process she landed in the hospital for dehydration. There were days where her numbers looked good and others where they didn’t, and the constant oscillating between hope and disappointment took a toll on Diane and her loved ones.
“I was seeing all these patients who had gotten cord blood who were getting better and better and I was getting worse and worse, and I couldn’t figure out why,” she said.
But she was getting better. On Dec 30, 2013, Diane was informed the stem cells had grafted 100 percent. Unlike previous treatments she’d gone through to put the cancer in a remission-like state, Diane was essentially cancer-free, barring a relapse. But she was not entirely out of the woods yet.
Another setback hit when she found out she had fungal pneumonia the day she was packed to head home from the Baltimore area. She eventually did return home Feb. 14, 2014, but still made numerous visits to her local doctor and to Johns Hopkins. Fungal pneumonia in her condition carried an 85 percent mortality rate, and it wasn’t until months later, in April, that Diane was fully clear.
These days, Diane has new allergies and is more prone to infections, but describes her health as “fabulous.” She left the hospital weighing just 76 pounds, but has returned to a normal weight. She enjoys reading, cooking, dancing, and being in nature. She says she loves trying new things, and her next big adventure is a foray into river kayaking.
Now she works on a project called 365 Days of Health, through which she hopes to show people the various pathways and means to live more integrated healthy lifestyles.
“My goal is to really inspire people to look at their health not as a one-way street,” Diane said. “To trust their intuition and understand there are a lot of things available to us that will help nurture our body.”
She encourages those dealing with their own health battles to ask questions and do their own research. She recommends patients form a good team around themselves, for both their own benefit and the benefit of family members and friends who also feel the weight of the illness or condition.
Naturally, Diane has become a vocal advocate for more widespread banking of cord blood. She says many expectant mothers are unaware public cord blood banking is an option, and some are scared off thinking more costly private banking is the only option. She also wishes doctors would publicize and more actively pursue cord blood banking arrangements. She encourages all expectant parents to visit Be The Match to learn more about cord blood.
July is Cord Blood Awareness Month, but that’s not the only reason it holds a special place in Diane’s heart.
Diane does not know the little girl whose umbilical cord blood saved her life; she knows only the cord bank and the date it was collected. That doesn’t stop her from being grateful. Diane posted a video to her Facebook page on July 21 wishing her anonymous donor a happy birthday.
Diane is well aware of the new life cord blood gave her, and laments how often this resource is allowed to go to waste.
“Letting it go to the trash is just not an option when you can save lives with it,” she said. “It gave me life. Bottom line, we were at the last chance for me.”
It wasn’t easy, but Diane has emerged with a renewed vigor for life and is thankful for the opportunity to move ahead with the things that are important to her.
“Was it a difficult road?” Diane said. “Absolutely. But it’s one I’m really grateful I took.”
