Wednesday, May 19, 2010

World Hepatitis Awareness Day

What a difference a year makes.  Last year, on Hepatitis Awareness Day, I wrote here about my youngest daughter's struggle with the Hepatitis B virus.

This year, she's in a different place.  A blessedly different place.

The Hepatitis B Foundation, a group of truly amazing people, have asked me to share Cholita's story for their newsletter.   As I wrote this, I thought of the incredible journey Cholita has taken in her short 4 years on this planet.  And while I'm overjoyed that her disease status has changed, I can't help but feel sadness that her story is so unique.  I will never forget the wonderful people I've met through my daughter's disease, and will continue to pray for the researchers who are working so hard to find a cure to this tenacious virus.

A giant syringe, born of cardboard tubes and late-night ingenuity, hung from the ceiling in the basement of my husband’s dental office.  It swung and twirled as our four year-old daughter hit it with a baseball bat.  Needles had become as much a part of her life as playing at the park or peanut butter sandwiches.  For the past year, she’d had a blood draw every Wednesday, a PEG interferon shot every Friday and numerous shots of a drug called Neupogen to counteract some of PEG’s neutrophil-zapping side effects.   She’d just had her very last injection and smashing apart a candy-filled syringe, with friends and family cheering her on, seemed appropriate.
Our little girl was born in China, a four and half pound baby found at the front gate of the Guiping Orphanage.  The nannies described her as “active and restless” and said that when she was hungry she “screamed loudly and kicked at her crib”.  Although the word “feisty” wasn’t specifically used in her paperwork, I think a mandarin equivalent was tossed around by the nannies in reference to this new little resident.  Her feistiness helped her to gain weight in a crowded orphanage and to accept and whole-heartedly embrace her new life in America.
Before we met her in China, we spent many late nights reading about hepatitis.  We knew my husband’s father had had hepatitis, many years before when he was a young surgeon with the Public Health Service.  He was stuck with a needle and later became very ill.  The doctors didn’t even call it Hepatitis B at the time, but by the misleading moniker of “non-infectious hepatitis”.  As most adults are prone to do, my father-in-law quickly cleared the infection.  From our reading, however, we knew that the chance of that happening for this baby girl in China was very slim.
We met her on a steamy day in a third floor conference room in Nanning’s Lottery Hotel.   Yes, she was skinny, and yes, she needed a bath, but she was otherwise very healthy and strong.  I almost wondered if her initial tests were wrong.  Blood work at home in the United States confirmed that there was no mistake.  Her Hepatitis B viral load was over 1 billion and her liver enzymes elevated.  She was too young to start treatment, so we watched and waited.  Her biopsy at age 2 showed liver damage and we discussed our treatment choices.  Since there are only 2 options for young children, Lamivudine and Intron-A, it was a short conversation.  I knew people who’d had success with both, but I didn’t want to use either one of them; I wanted to try PEG interferon.  I had great confidence in our doctor.  I knew she was one of the top pediatric GI’s in the nation and one of the most experienced in treating children with Hep B.  The only question I had for her was, “Do you think you can use PEG safely?”  She said yes, and we started the long process of getting the insurance company to pay for a drug not currently FDA-approved for use in pediatrics.
By the time our daughter was three, after an initial rejection from our insurance company and then a successful appeal, we were ready to start.  Four hours after our daughter’s first PEG injection, she abruptly doubled over and yelled, “My body hurts!”  She was feverish and miserable.  I doubted our decision and wondered if we could finish a full year.  Mercifully, as the doctor had told us would most likely happen, her side effects quickly went away.  Despite being more tired than usual and more prone to nose-bleeds, she was just our active, happy little girl.     
As I watched her hit the pinata during her End of PEG Party, I thought how glad I was that we didn’t have the results back yet.  The last time we’d checked her Hepatitis B viral load, it was still well into the millions and the doctor didn’t seem optimistic; but we  agreed that despite her lack-luster response, we’d see it through to the end.  I’d accepted that the treatment wasn’t working, but felt strongly that her courage through the year was worth celebrating, with or without positive results.  
A few days later, I went to the hospital to pick up her lab sheet. The fax machine hummed and the secretary handed me the paper.  I’d planned to wait until I was alone in my car to read it, but I only got a few steps away from the nurse’s desk.  Next to HBV DNA Viral Load, instead of a number so high I always had to count the zeros, there was no number at all.  Undetectable.   I gasped and I think maybe I sat down in the hallway, literally floored.  The whole thing’s a blur.  I do know that I’ve never been more pleasantly stunned in my life.  When we saw our GI doctor, she danced.
Three months later, we tested our daughter’s surface antigen.  Negative.  More celebration.  And then we tested for surface antibodies.  I got the results just before Mother’s Day.  The lab report said, “consistent with immunity,” a truly wonderful phrase and the best Mother’s Day gift I’ve ever received.  
Last year I wrote a letter for my daughter that was published here in the B Informed Newsletter.  I had written the article on Hepatitis Awareness Day, when my daughter was in week 14 of her treatment.   I said that for her, everyday is Hepatitis Awareness Day.  Now, considering her new status, maybe I was wrong.  As she grows older, I doubt that she’ll remember her biopsy, or her liver ultrasounds, or her PEG interferon shots. She’ll still be monitored, but for the most part, if she speaks of hepatitis at all, it will be in the past tense.  So my prayer for Hepatitis Awareness Day 2010 is that someday her case will not be unique; that for everyone, Hepatitis B will cease to loom large in their lives and when we speak of it, it will be in the past tense.


~T~ said...

Beautiful description of her miracle. Congratulations!

Jen Bay said...

So well written and heartfelt. It's a great article, and a fabulous blessing and miracle.

Julie said...

You are an amazing writer!! Of course, you have amazing material!! What a miracle.

Lisa said...

E! I am just now catching up on the's been a crazy move for us....still not in Jersey yet...but I wanted to say how absolutely lovely this was and how proud I am to be your friend, you amazing writer, you, and also how touched I was by the piece. You KNOW why this pricks my heart and makes my throat close up in that, "I'm not going to cry...I'm not going to cry..." way. So beautifully written and on target for expressing the sentiments of this (and I would expect, EVERY) parent's feelings regarding Hep B. So hopeful! I love it. Much love to you, my friend!

PS Does this mean I can name-drop when we go to CHOP this fall? I'm totally name-dropping, dude. :)