Saving Meghan(21)

After he completed his morning rounds, Zach was ready to call Becky Gerard. Along with the lab results for Baby Sperling, Zach had in his possession the results from Meghan Gerard’s blood work and genetic testing.

The results were inconclusive.

He did not feel compelled to explain to Dr. Sayre or any of the interns the complexities of proving a case of mitochondrial disease. It was notoriously difficult, which was why the hospital CEO, Knox Singer, was beginning to tire of the number of mito cases Zach had been diagnosing of late. Every new case meant more expensive tests and treatments and new battles with insurance companies for the patient and the hospital.

“Are you sure about this case?… Are you sure about that one?… Are you sure?… Are you sure?” That had become Knox Singer’s ongoing refrain. But Zach was sure about Meghan Gerard, just as he was about all the cases he had diagnosed over the years, because he knew the symptoms better than anyone. He had lived with those symptoms, and he had watched Will die with them.

Despite the whispers of confirmation bias that were chorusing into shouts, Zach did not particularly care what the administration thought of his penchant for diagnosing new cases of the disease.

He knew mito when he saw it.

Zach retreated to his small windowless office on the pediatrics floor, where his desk lay hidden underneath mountains of journals and research papers devoted to understanding and curing mitochondrial disease. He paused to ask himself: Am I really doing this again?

Zach pushed his doubts aside and made the call.





CHAPTER 10





BECKY


Becky was in the kitchen, waiting for her world to turn upside down. She hid her real tears among those she cried while dicing onions for the special dinner she was cooking Meghan, who had a new diet to go along with her new disease. Two weeks had passed since Dr. Zachary Fisher had diagnosed Meghan with a mitochondrial disorder, and in that short time, Becky had become something of an expert on the condition. With the help of a dietician at White, Becky had devised a menu for Meghan, one that would hopefully get her body to change food into energy.

Becky now kept a detailed log of everything Meghan ate, with all portions carefully weighed and measured. The number of calories taken in, too many or too few, could be a problem. Meghan’s protein intake increased dramatically, and a complex carbohydrate was included with every meal. Meghan went from rarely eating to having four to six small meals every day, including the homemade chicken soup that had been her staple for the past few years.

In addition to the dietary changes, Meghan had begun taking what Dr. Fisher referred to as a mito cocktail. The mito cocktail was a combination of fifteen different vitamins and supplements that a compounding pharmacist combined into a bitter-tasting liquid and then flavored with mint to improve palatability.

“We’ll be able to assess her after a few months to determine if her symptoms are lessening to some degree,” Dr. Fisher had said. “That’ll tell us as much as any biopsy could, if not more.”

Becky had reason to be hopeful. Many forms of the disease were shown to be responsive to the high-dose vitamin and supplement therapy. Even better, because of Dr. Fisher’s renown with treating mitochondrial disease, Meghan had been placed on a waiting list to receive an experimental medication called Elamvia, which Becky understood to be a peptide agent that helped stabilize the mitochondria, essentially allowing the cells to recharge. The drug showed promise in late-stage clinical trials. For now, as Dr. Fisher emphasized, the goal of Meghan’s treatment was to slow the disease progression because there was no known cure.

No. Known. Cure.

Becky retrieved the mito cocktail from the fridge and poured the correct dosage into a glass. The cost of the drink Dr. Fisher had prescribed came in at around $2,500 a month, close to what they paid for their mortgage. Thankfully they had only a small co-pay to worry about. Money was getting tighter, due to a slowdown in the building market. Becky would give up her gym membership in a heartbeat if she had to, even though those two hours she spent working out—on the days Meghan actually made it to school—were her only respite. The rest of her time was spent providing care, doing research, and worrying.

Dr. Fisher had warned that insurance companies were aggressive in pushing back on mito payouts, especially with inconclusive labs like Meghan’s. It could mean that Meghan would have to be subjected to far more invasive procedures should their insurance company start to balk at the bill.

Becky blamed herself for Meghan’s meltdown in Dr. Fisher’s exam room. If she had known the size of the needle, if she had had any inkling whatsoever, she could have given him fair warning. It was a minor miracle Dr. Fisher had convinced Meghan to let him take a cotton swab to the inside of her mouth to acquire the genetic sample. For the blood work, Becky had to employ guided meditation techniques she had learned online to help Meghan deal with the pinprick sensation needed to get samples.

Since the diagnosis, Becky had watched Meghan like a hawk, observing her every movement, down to the twitch of an eyelash, because she feared her daughter’s symptoms would worsen any day. Her research had confirmed Dr. Fisher’s dire warning that neurodegenerative diseases were notoriously unpredictable—that a decline could take days, months, or years—hence her vigilance. For Meghan, for the whole family, living with mito meant living every minute waiting for that other shoe to drop.