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A Mother's Worst Fear

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By KRIS DIVIOVANNI

The Tampa Tribune

Published: May 11, 2008

I'll never forget the day my 33-year-old daughter Michelle was diagnosed with multiple sclerosis.

We were actually happy to get the news. It was the end of an exhausting saga that had begun weeks earlier, with her urgent call from Dallas. She had just gotten the results of a routine MRI. She was hoping to find the cause of the tingling in her legs that had begun after a recent fall.

"Mom, they found lesions on my brain and spinal cord. I have an appointment with an oncologist in the morning."

I felt my heart stop. "I'll be on the next plane," I reassured her, and I was. Although I had flown the 1,000 miles between our homes many times, never had the journey seemed so long. All the way I kept thinking about cancer - cancer that had spread. It was a death sentence, and she was much too young to die.

After I arrived that night, the real journey began. We saw the oncologist, who scheduled another MRI, a CT scan, mammogram, chest X-ray, and way too many blood tests. Then we saw the radiologist. Then the oncologist again, who gave us a ray of hope. Preliminary results - NOT CANCER. Ecstatic doesn't begin to cover our reaction. But our happiness was short lived. If not cancer, then what was going on?

The possibilities, we were told, ranged from a vitamin B-12 deficiency to rare conditions with names we couldn't pronounce. More tests needed to be done. A spinal tap produced a seven-day migraine so severe she couldn't lift her head off the pillow. Then a brain scan was ordered, along with more blood work. I carried giant folders of reports and films from one specialist's office to the other. The oncologist finally pronounced the spots on her spine "hemangiomas," benign blood-filled tumors. We waited anxiously for word on the other smaller spots on the brain and the spinal cord. After two more miserable weeks in limbo, we were summoned to the neurologist's office. The official diagnosis: multiple sclerosis.

We didn't know whether to laugh or cry. The feared death sentence had been commuted to life in prison - confinement to a chronic, progressively debilitating illness. I looked at my beautiful, vibrant daughter and smiled. She wasn't going to die - at least not yet.

There are some benefits to being in a big metropolitan area with large teaching hospitals. We found a nationally recognized MS specialist to take her on. From then on, we began our education, learning about recently developed drugs, and new ones on the horizon. She started on Copaxone, the most promising at the time. The daily intramuscular injections she learned to give herself were so painful, she first had to hold ice on the area to numb it. Afterwards, the injection sites were tender for days and she had to follow a specific routine; right thigh, left thigh, right arm, left arm, right hip, left hip, stomach, then start over again.

Thankfully the Copaxone eventually gave way to a new drug, still in clinical trial. She agreed to participate in the study, not knowing if she was getting the "real stuff, or a placebo. The new drug was a piece of cake - a simple once-a month IV infusion. But months later, the trial was suspended when the manufacturer pulled the drug to investigate two deaths. An agonizing year later, the drug trial resumed, only now they suspected liver damage was a side effect, and her liver tests showed she could not tolerate the drug.

She decided against going back to the painful Copaxone injections, and spent a year with no MS meds. That's not to say she did not take many pills each day. There are a myriad of other drugs that don't fight MS itself, but help the patient cope with the "symptoms" - pain, numbness, fatigue, spasticity, vision, bowel, bladder, or cognitive problems. Finally, last year, the manufacturer of the new MS drug re-evaluated the potential for liver damage, and my daughter was able to start treatment again.

Today, several years after her diagnosis, she remains only mildly symptomatic. As many with chronic illnesses know, there are good days and bad. Her job, which required many hours on her feet, is so far the most significant casualty of her illness. Although they would have gladly made accommodations for her - a scooter, more desk work - she decided that her MS was an opportunity to make a major life change. She boldly gave up her well-paying career in pharmacy to pursue her dream of working with animals.

She started her own pet-sitting business, and it has now grown to the point where she is thinking about hiring an assistant. Her symptoms still bother her, especially the overwhelming fatigue common to most MS sufferers. But she tells me, "Mom, no matter how tired I am, once I walk in that door and a pet jumps up, happy to see me, I just forget about everything else." Her customers love her so much that they've banded together to nominate her for Pet Sitter of the Year at the Pet Sitters of America Convention in the fall. I hope she wins. But even if she doesn't get the formal title, in my heart, she already has it, and will every year to come.

Kris DiGiovanni teaches in Pasco County, her second career after 15 years in information technology.

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