Wednesday, January 26, 2011

Good-night, sweet Prince

I loved Liam before I ever met him.

In April 2007, after Toby was diagnosed with stage IV neuroblastoma, after we saw the scans of his body filled with metastatic cancer, and after our doctor told us that Toby might die from the baseball-sized tumor in his abdomen, a parent from Toby's preschool sent me a clipping from Cookie magazine. "Maybe you've seen this," she wrote. "This boy has cancer too."

I had not seen the article, but started carrying it in my bag, searching everywhere for Liam and his parents. I desperately needed to connect with another family experiencing the same terror and pain. Eleven days after Toby's diagnosis I posted a comment to Liam's blog, and received a meltingly lovely voicemail from Liam's father Larry the next day. Our paths finally crossed a few weeks later.

Toby already had tubes implanted in his chest and had been through two devastating cycles of chemotherapy. His hair was gone, his mouth was lined with oozing sores, and his days were spent in a blur of treatment. This particular morning he had to have blood drawn via a "fingerstick," a routine but painful procedure that involves pinning down the child, lancing a finger and squeezing out enough blood to perform a battery of tests. Toby began screaming immediately and was inconsolable for an hour. After everything he had already been through I didn't expect such a strong reaction.

A beautiful woman with startling blue eyes touched my shoulder, looked at Toby and said, "Don't ever let them tell you that he needs a fingerstick when they can access his port instead. It won't hurt him as much." This was my introduction to Gretchen. I followed her advice for 3 years.

Liam, our beacon and guide, the beautiful boy whose nickname was "Mr. Inquisitive" died on Monday.

On their first "playdate" in the hospital pediatric wing, as both were attached to blinking, beeping IV poles, Liam and Toby fingerpainted. Toby was tentative, unsure whether he liked the sensation of the paint on his fingertips. Liam stuck all five fingers into the paint pots, scooping out the oily pigment and brandishing it against the paper, swooping again and again into an orgy of beautiful color and energy. He chattered the whole time, laughed, described his masterpiece, tore into life with joyful abandon. And then he raced off to the next thing: to investigate the pneumatic blood tube delivery system or visit with his buddy, the custodian who mopped the floors, or a long conversation with the cafeteria workers.

I wanted to live like Liam. Each time he had surgery, he was up and walking within absurdly short periods of time -- a day, 12 hours, immediately. He loved science and magnatiles, he played with his little sister Ella with a sweetness that I've never seen before or since. He took comfort in his paci and clan of stuffed lovies. He was a child who always wanted to "go faster, daddy." He deserved to become a doctor, an astronaut, an adult.

Today is my birthday. Today I have lived 40 years longer than Liam.

Imagine if Liam was your child. Imagine administering agonizing treatment that makes your child whimper with pain. Imagine your child with no hair, hearing loss, sterility. Imagine your child not having the energy to play. And imagine this scenario replaying itself day after day for almost 4 years. The thing is, Liam's story is not singular. Every day (every day!) 46 children are diagnosed with cancer. Every day we face the fact that there is less than a 5% survival rate for relapsed neuroblastoma. And every day we are reminded that there is a "near absence" of research into pediatric cancer drugs. The reality: most children will be dead long before government funding is secured for pediatric cancer. Please don't turn away.

Give 3 friends a box of cookies from www.cookiesforkidscancer.org/ and count it as your charitable contribution for the month. Or have a bake sale at your office and find out if your employer has a matching program. If you are in the NYC area, please walk with us in Central Park on May 7 to help raise funds for research and treatment. Or find out more about neuroblastoma and donate at www.bandofparents.org

Please remember Liam and all the children who fight.

Thank you.

Love,
mooki

9 comments:

Jan said...

Thanks for this wonderful post about Liam. Many of us who will now not meet him within the bounds of this world are so sad that such a child of light, a prism of all the good energy of the universe, is no longer with us.

Anonymous said...

It's been a long time since I wept over a posting here, but after I saw this terrible news on facebook, I knew to check this blog. I had also met Gretchen briefly during a baking session when the cookiesforkidscancer project had started, and I was humbled by her initiative and charisma. So sorry.

Anonymous said...

I didn't mean to be so anonymous in my post above--Nancy W. here.

Donna Ludwinski said...

Exquisitely beautiful tribute Mooki; you have framed this sad, terrible tragedy. These kids do deserve to grow up. My heart breaks with all who cheered for this sweet Prince Liam.

Road Accident Solicitor said...

Great article

Lynn Bernstein said...

Mooki,
How's Toby doing?

Anonymous said...

Just want you to know I think you have a remarkable writing style...it is riveting, real and raw. You should write...I mean write a LOT about every and anything. God bless your family.

Just Me said...

Always thinking of and praying for all of you. If you have a moment, please share a quick update.

Anonymous said...

prayers rising for all the kids who fight cancer- I send hope & love