Sunday, May 23, 2010

Papa, we may lose the crop

It's a good thing we're not farmers,
dependent on the vagaries of weather,
because this Spring would have cooked our goose.

Take, as an example, our lovely climbing hydrangea,
my pride and joy.
In the above photo, it was in a state of perfect health.

That all changed overnight.

An unexpected frost hit, 
and here is the outcome.
Sad, so, so Sad.

But I think it will make it.

Lyle's kiwi vine, however,
which looked so promising just a few short weeks ago...

Well, it's seen better days.

Papa, I think we've lost the crop.
Last time I checked, though,
Albertsons sells kiwis.

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.

Tuesday, May 18, 2010

A Shocking Massage, a Sweet Girl

For the large part of every weekday, it's just me and Cholita holding down the fort.  Yesterday was my birthday and I think she felt the weight of the whole family on her tiny little shoulders to make my day special.  The girl literally wore herself out.  She sang songs, she presented me with several interestingly wrapped gifts (one of Lyle's ties, some dental floss, a candle, numerous cards....),  and she showered me with hugs and kisses.  But her big surprise, the one she's been planning for days, happened that evening.

While Lyle was busy cooking my birthday dinner, she whispered in my ear that she'd opened a spa, conveniently located in my bathroom.  Before I could respond, she sprinted upstairs so she'd be ready to greet me properly.  "And come quick!" she yelled from the landing, "or your water will get cold!"

Upon my arrival at the spa, the tiny drill sergeant had morphed into a serene, rather pompous character with a slight British accent.  "Welcome to the Sweetpea Spa," she said with a dramatic sweep of her arm.  "Follow me please."  In the bathroom tub, she'd placed a large plastic container, filled with warm water.  "Soak your feet, dear," she said.  I rolled up my jeans and did as I was told.  Then she got out a towel and gave each foot a thorough, ticklish rubbing.

From there, she moved me to the toenail painting station where each toenail and accompanying toe was painted with either green or pink paint.

"Oh no!" she yelled mid-way through, breaking with character.

"Don't worry,"  I assured her, "I think my toes look just...."

She interrupted me.  Apparently my pedicure was not the issue.  "I forgot to have you take your clothes off and put on a robe!"  She threw up her hands like all was lost.

Reassured that I really wanted to keep my clothes on anyway, she reverted back to Euro-Cho mode and offered me magazines and a drink.  She's all about the experience.

After my toe painting, I was ushered into the closet where she'd created a soothing massage center, compete with pillows and mood lighting.  I laid down on my back (lest I muss my polish), and closed my eyes.  I thought I'd get a relaxing head rub.  What happened next truly took my breath away.

With cleaver hands, she rapidly hacked my stomach, a technique I'm sure she's seen on backs, but is a little shocking to the internal organs.  Blunt Shiatsu knives, that's what she had going.  And have I mentioned that she's surprisingly strong?

"Oh, my dear, is that too hard?" she asked as I sputtered and gasped.

"Hmm, maybe a little," I managed to say, curled into the fetal position.

"Lay down, honey.  Let's try this again...."

From there she moved onto the relaxing head rub that I'd envisioned.  With the wonderful smells wafting from downstairs, and my baby girl attending to my every need, it was a truly fantastic, wonderfully breathtaking birthday.

Monday, May 17, 2010

Scenes from the Garden

How Lyle spent his Saturday....

....finishing the wisteria walkway.

No matter how many times I've said, "This is the coolest thing you've ever built,"
he manages to top it.

And so really, this time I'm sure.  This is absolutely the coolest thing he's ever built.  
These pictures are just a sneak peek.  Without the vines, it looks naked.

Over on the front porch, the Autumn Sunset climbing rose is blooming early.
Way early.
It's Rose's rose and always blooms for her birthday in June.
This year it's hitting its peak in May.

Over on the dining trellis, we have our very first blooms on the Cecile Brunner climber.

Baby doll pink is usually last on my list of color choices,
but I'll admit that these are the most adorable little flowers I've ever seen.
The wood on this trellis is also cedar, built just one year ago.
We've let it weather naturally and I love the muted gray color.  
It doesn't fight with the white colored house and lets the vines take center stage.
We'll do the same thing with the wisteria walkway.
The thought of painting that beast makes my arm tired.

Friday, May 14, 2010

Before and After

This was an obvious photography fail.

I'd been taking pictures out in the bright sunlight when
Cholita came running across the shadowed patio, 
wearing her sister's too-big dress and a pink crown,
 draped in her rag of a blankie.

It was a photo op too good to pass up.
Unfortunately, I didn't think to change my camera settings
and the result was predictably dark.

I am a complete newbie at photo editing,
so I messed around with the picture in I-Photo,
a program equal to my abilities.

I cropped, upped the exposure, downplayed shadows,
and generally just moved cursors 
until things looked interesting.

From there, I went over to Photoshop Elements,
a foreign land to me,
and used Coffeshop's Black and White action.

I like it.
Somewhat artsy, don't you think?

Saturday, May 1, 2010

Yes, I support helmets

But on our little driveway, with top speeds reaching, oh, about 5 mph, I'm not too picky.

So last night when the girls invited us out for a bike and scooter show,
I wasn't terribly concerned about safety.

There were the expected figure eights and the one-handed ride (shown above).
Nothing too worrisome.

But hey now.  What's this?  Olaf looked concerned as well.

We are not the Chinese acrobats, thank you very much.

And why, may I ask, is the baby the one pedaling the bike?

Before I could object, it was time for bows.

Notice the intact skulls.

I think we'll talk about their trick riding later.
For now, I'll let them revel in the success of a perfect performance.