Wednesday, April 04, 2007

What a difference a year makes

I wrote this for Silicon Valley Moms blog

A year ago today I was not writing for the Silicon Valley Moms blog. Instead I was blogging on my personal blog about my son's upcoming radiation therapy. Three rounds of massive amounts of steroids, chemo and Interferon had not been enough. His GI system was failing. He wasn't growing. It was time to move to the next step.

Right about now we were sitting in the doctor's office dreading and hoping. At his previous appointment, his doctor urged us to try and postpone radiation therapy by two to three weeks. His tumor wasn't small enough yet, but it might be.

In my dreams, my son would avoid being irradiated. But even postponing seemed impossible. My son had been measured and fitted for a custom cast that would hold him in the exact position for the precise shooting of radiation rays. If we pushed it back too far, they would have to make another cast.

When we got home, we got voice mail that his radiation had just gotten pushed back by three weeks, because of scheduling issues. The maximum time before a new body cast.

A year ago today, radiation therapy was still up in the air. I cried after his GI appointment, because he was still vomiting every single day and food was just sitting in his stomach undigested. This was something I allowed myself to cry about, because radiation therapy was just too big.

Two days before the new radiation therapy deadline, his doctor said his tumor was small enough and radiation therapy was canceled.

In June, my son almost died from sepsis. An everyday germ had gotten through the IV line to his heart and infected his blood stream. He had bouts of septic shock. He experienced it once at home before I took him to the doctors. He turned blue and stopped breathing. I was incredibly lucky that I was able to tickle him and get him breathing again. At the hospital the monitors beeped like crazy. Loud blaring of "code blue" on the speaker. Doctors and nurses would rush in filling the room. Lots of equipment and bustle. I watched and prayed. He'd come back again, all pink and smiling. But it was clear the cure was killing him. As the bacteria died it dumped tons of toxins into his bloodstream.

Then in walked an unlikely hero -- a young intern on her first couple of days on the job. She stared at us like a deer caught in the headlights. Her eyes got even bigger as she saw his enormous file as large as telephone book. I watched her face sink. She said "I can't talk now." in a very flustered voice. I could smell her fear. Yet she saved his life by suggesting an alternative new antibiotic to the attending doctor. I will never forget her and I doubt she'll forget my son. A few months later, I saw her walking along with some fellow interns. She asked about my son and sounded like a professional doctor kind caring and confident. I felt as proud of her as if I had taught her.

If this all seems unreal to you, it is unreal to me now. We have passed through that stage. At least several months have gone by without hospitalization. Sure my son has plenty of medical issues, but they are more chronic and a lot less scary. He still receives 500 calories a night through a tube in his stomach, but he's growing and walking and talking. Save for his left arm that twists at weird angles and can't do a whole lot, and a tube in his abdomen, he looks like an extra small two-year old.

So why am I telling you this story? Well three reasons. One is to show the incredible resiliency of children. I can't think of a worse crime than deliberately poisoning your child. Okay, it was in the name of saving his life, but the drugs caused most of his medical problems. But I've found repeating "Children are resilient. Children are resilient." often helps me then and now when I feel like a terrible mom.

Another reason is to show that I've found on this journey that people help you in the most unexpected ways.

And finally I'm writing about it here. A year ago, I just couldn't have. Blogging about the medical drama of my son in a public forum didn't feel safe. This is a special place. I started out slowly in August with Where Everybody Knows Your Name about why I liked being a "frequent flyer" at Lucile Packard Children's Hospital. I continued with Top Ten Signs of Your Kids Live in Silicon Valley, continued with Blogging The Tumor about my personal challenges of parenting a child with many medical needs, and stories about my son and my typical daughter. I also wrote a few political blogs including the politics of health care

I sometimes received nudging emails from Jill, so I have definitely not been the most regular contributor. My posts tend to wax and wane with my son. His progress has been like that of a startup with its imminent failures and shaky triumphs. I suppose I should have been prepared for this as I met my husband while his startup was in code blue.

But again, Jill and blogging a counterpoint to her dislike of Sanjaya has forced me to post again. Well okay, I don't like Sanjaya that much. But things are going better. Still I don't want to jinx things too much and to those who don't know me, it might sound weird to be all proud that my son is finally on the very bottom of the height charts. But I am. It's taken a lot of hard work to get there.

This week is also my five year anniversary of blogging on Livejournal. I remember a fellow blogger at one of our Silicon Valley blogger get-togethers telling me quite earnestly that Livejournal was a blogger ghetto. Well maybe I'm a ghetto kid, but I've found a sense of community there and here.

I've met some amazing folks through blogging and reconnected with others. Thank you for reading and writing. You've helped more than I can explain.

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