Blogging Through A Tough Battle

Diaries give parents a chance to vent — and hope

By Marc Tracy

Published August 25, 2006, issue of August 25, 2006.
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Three young girls with juvenile Tay-Sachs — Dakota Bihn, Alexis Markowich, and Jashaia Small — are currently receiving umbilical-cord-blood therapy at Duke University Medical Center. The girls are under the care of Dr. Joanne Kurtzberg, who, as the Forward reported last year, has already performed cord-blood therapy on children with Krabbé disease.

Thanks to the not-for-profit organization CaringBridge, the girls’ day-to-day progress can be monitored on personalized Web diaries maintained by the patients’ families. The journals are by turns fascinating, inspiring and heartbreaking.

In the introduction to their daughter’s journal, Alexis’s parents, Craig and Nichole, write in voices that alternate between their daughter’s and their own: “This could give me a real chance at life, a miracle! We will not give up on our girl.”

Alexis’s journal begins in November 2005, prior to the transplant itself. From there, the reader can follow an arduous, poignant journey with endless swings between optimism and pessimism, a perpetually moving seesaw.

“Grow cell grow!” the journal demanded a few days after a donor’s cord-blood cells had been infused into Alexis’s bloodstream. This rallying cry was followed, two weeks later, with “Day +12 We have cell growth WBC .1.” Alexis’s white blood-cell count continued to grow, and on February 3 came this triumphant entry: “Greater than 98% donor cells!”

But as Alexis moved out of the hospital and into a nearby apartment with her family, things got a bit more frustrating. “What a day… nine hours at clinic. Ahhhhhh!”

“It’s really hard to tell if the disease has progressed,” Nichole Markowich told the Forward, “because [Alexis] is always really, really sleepy.” Alexis celebrated her fifth birthday in March — “+69,” as it says in the journal, as though the only measurement that really counts is how many days it has been since the transplant.

Cord-blood therapy entails a regimen of chemotherapy followed by a transplant of umbilical-cord blood from a donor who is a close match. The transplanted cells take roughly a month to “grow in” to the blood and another three to six months to reach the brain, where it is hoped that they can help provide the hexosaminidase A enzyme that Tay-Sachs patients lack.

“I would say umbilical-cord blood’s the best we have,” said Kurtzberg, who explained that this blood’s cells are immature enough to be accepted into the blood but mature enough to produce myelin, which normally would be created by the missing enzyme.

The goals for treatment depend on when the disease is caught and how severe symptoms are when treatment commences. “In children who have a lot of symptoms,” Kurtzberg said, “I think the best you can hope for is you stabilize the disease. In children who are early, you can see improvement.” Generally, juvenile Tay-Sachs is considered fatal, with most of its sufferers dying by the time they are 15.

Unlike the disease’s infantile and late-onset forms, juvenile Tay-Sachs afflicts Ashkenazic Jews in proportions similar to other ethnicities. However, the results here could affect the treatment of late-onset Tay-Sachs, according to Kim Crawford, director of member services for the National Tay-Sachs & Allied Diseases Association.

The Duke girls’ families have come to know one another well and have become close. Nowhere was this more evident, or affecting, than in Nichole Markowich’s words in the CaringBridge journal of Zoe Bachman, a girl who had been receiving cord-blood therapy for Niemann-Pick disease at Duke. Zoe died June 9. “Zoe,” Markowich wrote that day, “you are not only a Princess, but an Angel who is a precious addition to the heavens above.”

Meanwhile, by pure chance, the Bihn family lives roughly 20 minutes away from the Markowich family in Ohio. “So we’ll still see Dakota,” Nichole said happily.

The Markowiches were “getting ready to go home” when the Forward spoke to Nichole in July. An entry from around that time read, “Today we met with Dr. K. to get the official OK to leave,” and concluded, “We need four more days of good health!!!”

Then came the next journal entry, three days later: “We do not get to come home … YES you read clearly we do not get to come home :( .”

But the family presses on. It’s not all bad news: “Another good confirmation is Brianna” — Alexis’s older sister — “does not carry the Tay-Sachs gene,” Markowich wrote earlier in July. “One less thing on my stress list!”

As for Alexis, the Markowiches preserve a balance between praying for that still elusive miracle, a true cure, and enjoying their daughter as she is now.

“Living with the fact that your child will pass on before you is a hard thing to deal with every day,” the Markowiches explained in Alexis’s journal. “You learn not to dwell on it, as some days are easier than others. Each day with your child is something you long for and do not take for granted.”

You can visit Alexis’s Web site at www.caringbridge.org/visit/alexismarkowich. To access the other girls’ journals, substitute any of their names for Alexis’s at the end of this URL.






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