An Anniversary, a Hope, and a Video

It's been nearly two years since our youngest daughter had her last shot of PEG Interferon.  Two years since we happily bid farewell to the sharps container and the alcohol wipes.  Two years since we left behind the marathon naps and achy tummy and bloody noses.  And two years since we learned that our daughter no longer tested positive for Hepatitis B.

Which brings me to the hope part of this anniversary.   When our daughter began PEG, it was not approved for pediatric use with Hep B.   Another type of interferon, Intron-A, had been used for many years with children, but not PEG, the extended release version of interferon that took the number of shots down from three times a week to only once a week.  Although the convenience was a factor, the biggest reason we pushed for PEG was that our daughter's doctor felt that it might have a slight edge over Intron-A in achieving success.  If we were going to spend a year doing shots, a year getting weekly blood tests; if we were going to inject our little girl with something that would make her feel sick, we wanted the very best stuff we could get our hands on.  As it turned out, getting that PEG delivered to our door wasn't so easy.   Because it wasn't FDA approved for Hep B, our insurance company said they wouldn't pay for it.  Our doctor wasn't surprised and wrote a long letter explaining why our daughter's situation was unique and why she felt PEG was her best bet.  The insurance company wouldn't budge.  I looked into purchasing the PEG out-of-pocket.  It would be $1,000.00 per shot, once a week, for a year.  In addition, there would be the fees for the regular lab work, and unbeknownst to us at the time, another $700 per shot medication she would need sometimes up to 3 times a week to counteract some of the detrimental effects of the PEG.  Out-of-pocket wasn't going to work.  So I gathered all the information I could.  In the dark den, illuminated by the glow of the computer screen, I spent many late nights taking notes on adult Hep B usage of PEG or on the safety of PEG used in pediatric cancer patients.  I sent all the information to the insurance company and filed an appeal.

With the appeal process, the insurance company sends the patient's information, and anything else the family wants to include, to another specialist in that field, one of their own choosing, and the decision is in the hands of the doctor.  Within a week, I heard that our insurance company's decision had been overruled and that a refrigerated package of PEG would be arriving on our doorstep whenever we wanted it.  I happily paid the monthly $35 copay.

And now, in small part due to my daughter's success, doctors at major hospitals on the East and West coasts are recruiting children with Hep B for a research trial of PEG interferon.  They plan to combine it with an oral antiviral, hoping that the lowered viral load will give the PEG the edge that it needs to wipe out the virus. I don't envy those parents or children the year of treatment.  It's not fun.  But I do hope and pray that when they pick  up lab results at the end of that year, in the column where it says: Hep B Surface Antigen, next to it will be the blessed word NEGATIVE.

In honor of this anniversary, I wanted to re-post my little girl's video.  She was 4 years old when she told her story.  She sounds so babyish compared to her current 6 year-old self, but at the same time, I'm impressed with her maturity and strength.  Always have been.

Back to School--Here and in China

My littlest one, my almost five year-old Cholita, is ecstatic about a certain date circled in red on our calendar.  It's not her birthday, it's not Christmas, it's the day she'll head back to school.  She adores all things scholastic--sharpened pencils, little chairs, worksheets, story time, sharing time, recess, and don't even get me started on the book orders.....


In China, her school experience would likely have been very different.  In fact, she probably wouldn't have qualified for an education at all.  This was not due to her orphan status (although that certainly wouldn't have helped), but solely based on the results of a blood test.  Last year in a petition, thousands of Chinese citizens appealed to their government on behalf of their children.  I could hardly read some of their entries:

From Yunnan: I have endured enough to be a Hepatitis B patient, but my child is too young to understand why he can not go to kindergarten like other children. Every time he looks at me with inquiry, my heart breaks. When will it come that my child can get an equal opportunity?

From Hubei: It is not our fault being infected by the virus and we do not desire too much sympathy and help. All we need is the right to be treated equally and the fair competition. We are impeded in schooling and refused by employers in so long a time. The determination of standing on our own legs therefore becomes faint in reality. In many times I almost cannot help yelling out the voice in my heart: how could we survive in such a society?

From Guangxi: I was just admitted by Jilin University in 2008 while I was diagnosed Hepatitis B in the entrance physical examination and was thus forced to quit schooling. What I have been working so hard for, turns to be meaningless. The sunshine in my life dims. I have no idea what I should do in future. I can not help wondering: when will this situation be changed?

From Guangdong: In current China. it is almost of no use for HBV positive youth to work hard. No matter how diligent, excellent, and noble they are. The tag of POSITIVE is attached to them forever.

Last year at this time, I celebrated a headline from a Beijing Newspaper, "China's Kindergartens to Take Normally Functioning Hepatitis B Children".  It seemed such a momentous step in the right direction.  Unfortunately, the reality is that the stigma is still strong and the hope of equal rights in Chinese education is still far from realized for these children.   Instead of an outright denial, a parent is now required to produce "medical recovery documents" to show that their child is no longer infectious.  Most children with Hepatitis B will never clear their virus.  They may get to a point where their viral load is undetectable, but it's doubtful that will happen during childhood.  So even with seemingly hopeful legislation, they can still be denied a basic education.

This is something I simply cannot fathom.  I cannot read those pleas from parents in China and not think that that would have been my daughter--a young girl with an amazing mind, frustrated and angry that the world is passing her by.  What a tragedy.

My Baby Tells Her Story

It's been less than six months since my daughter finished her year-long treatment with interferon.  The needles, the sharps container, the smell of the alcohol wipes, that whole experience has quickly become a distant memory.  At age four, it's doubtful that my daughter will remember anything about it into adulthood.  That's wonderful, but at the same time, I want her to remember.  I want her to know beyond a shadow of a doubt that she's always been a fighter.  She's always had courage beyond her years.

I didn't want to rely just on my telling of the story.  I hoped to preserve something that would capture her, the girl she is right now with the scratchy little voice who could talk about such big things.

We stand in awe of her amazing result, but just as amazing, just as awe-inspiring, is her tenacious spirit.  We feel so blessed to call her our daughter.

Parties, Cell Phones, and Mercenaries: A Hep B Primer

Have you read many medical journals? Have you perused through any articles in the Journal of Gastroenterology? Let me tell you, I'm not completely convinced they're written in English. So when my big kids started asking questions about their sister's hepatitis, I had to get creative. If you happen to be a pediatric gastroenterologist/hepatologist, just look away.

There's a party going on in Cholita's liver. It's been going on most likely since she was born. These party-goers (Hepatitis B virus) are not the type your parents would want at their house. One look at them, and you know they're trouble.

The dad sitting on the porch (immune system) is unfortunately clueless. This is a newbie dad (a baby's immune system) and he just hasn't had enough life experience to know a bad actor when he sees one.....Seem like nice young men..... A more experienced dad (adult's immune system) would have seen these guys coming from a mile away and gotten rid of them before they could even step foot through the picket fence (acute infection= less than 6 months).

But this dad is naive and the thugs soon have a rip roaring party going on in the liver house. The partiers are having such a great time, they keep texting their friends (replication) and pretty soon the house is bursting at the seams (high viral load). So the party goes on and things start to get a bit messy (inflammation). Dad continues to think all is hunky dory (immune tolerant phase). This can go on for years.

Eventually, Dad wises up and when he does, he's not pleased with what he sees. He grabs his water gun and starts shooting. Unfortunately, these thugs have jumped onto the backs of his sweet little babies--the liver cells. So, he's shooting at the thugs, but when he hits a thug, he also hits a liver cell. Virus thugs and liver cell babies are falling in large numbers (high ALT). Thankfully this dad has LOTS of liver cell babies and when one of them goes down, another one grows and takes its place. He keeps shooting and the party seems to be clearing out (viral load going down). Unfortunately, the thugs don't really want to leave. They love the liver house and keep texting their friends. It's an all out battle (immune clearance stage). Can the immune system dad shoot faster than the virus thugs can text? Sometimes he can, but most often he can't.

The immune system dad is working hard, killing off thugs in large numbers, but sometimes he needs to rest. Sometimes he needs to refill his water gun. When that happens, the thugs go into texting overdrive. Dad comes back with his full water gun and sees that the party is even bigger than before. And so the battle goes on. With thugs and liver cells dropping like flies, you can imagine that the carnage gets a bit messy and the liver house is starting to show some wear and tear (fibrosis). Poor dad isn't making progress and the neighbors are complaining, so we need to send in reinforcements. We have two options: mercenaries (interferon) or cell phone smashers (antivirals).

The mercenaries are well-muscled killing machines. They make dad's water gun look seriously wimpy. Now, we like having Rambo on our side, but frankly, he makes us a little nervous too. He's shooting away at the virus thugs and mowing them down in great numbers, but he's also a little unstable and sometimes he shoots at completely innocent party-goers, just hanging out at the punch bowl (platelets, neutrophils, red blood cells, etc.). Anyway, what we hope the mercenaries can do is put an end to this party all together (stop replication, HBeAg-). The very BEST thing that could happen would be if the mercenaries, with the help of dad and his water pistol, could wipe the thugs out so thoroughly that a permanent guard is placed on the porch (surface antibodies) and the party can never start again.

If mercenaries aren't your cup of tea, there's also the option of the cell phone smashers. They're trying to stop all of this texting-your-friends nonsense (replication). The only problem with this, is that the thugs are determined to keep the party going. Maybe you can smash most of the cell phones, but now a few have showed up with steel-plated cell phones and our antiviral cell-phone smashers can't seem to stop them (mutations). Pretty soon, everyone has the steel-plated cell phones and we need to try a different breed of antiviral cell phone smasher. It might work, it might not. There are only so many cell phone smashers and the virus keeps making stronger cell phones that are harder and harder to smash.

So Cholita's party was out of control. She had so many thugs crammed into her liver, we couldn't even count them anymore. Somewhere over 5 billion. Daddy immune system shot millions of them down, hundreds of millions as a matter of fact, but when he took a break to reload his water gun, a billion snuck back in. The doctor took a little sample of Cholita's liver house (biopsy) and it confirmed that the party was making a mess (fibrosis). We knew Rambo could be dangerous, and yes, he made us nervous, but Daddy immune system needed help. If he was willing to keep shooting with his water pistol, we'd send in the machine guns.

At the start, the machine guns seemed to be winning. But as time went on, the partiers just turned up the music and texted faster than ever. At the very end, somehow, miraculously, not a single thug could be found. It was time for the mercenaries to clear out too, and so once again, we're left with only Dad on the porch with his water pistol.

In two months we'll check to see if the thugs are still gone and if a permanent guard has been installed at Cholita's garden gate. For now at least, the party's over. We're hoping forever.