How did you find out that Ilaria was sick?
She ended up for about two weeks complaining of back pain. At the time, she was almost 3 years old--and 3-year-olds don't complain about back pain, unless they've fallen or hurt themselves. So we went to the pediatrician, who decided to check her kidneys, and they were fine, and they said to watch her. ... So we watched her, and she'd come crying: "Mommy, Mommy, my back hurts." ... And we went back to the pediatrician; we knew something was wrong. They took a chest X-ray, and that was when the earth opened up for us.
What kind of cancer was it?
It's called germ cell/yolk sack. ... We got the X-ray, and it showed a fist-sized mass in her chest. It had collapsed her left lung, and was sitting on her pulmonary artery, and had displaced her trachea an inch to the right.
What was her prognosis? What treatment were you looking at?
We went in to get a CT scan, to see what we had. At first, they thought valley fever, because it was a more of a mucosal mass. ... A biopsy revealed she had germ cell cancer. We started chemotherapy right away--the doctor started chemo even before we got the biopsy back.
What was her chemotherapy like?
We went in for five days at a time, and then had two weeks off. We would both go and stay with her for five days. ... She was at (University Medical Center); they have the most fantastic staff there, really good--I can't say that enough. She had four rounds of chemo; June was when she had her last round of chemo.
And today?
(Laughs.) She's great. She's wonderful. Her alpha-fetoprotein levels--it's a tumor marker--at her highest, it presented at 18,000 (nanograms/milliliter), and peaked at 31,000. Today, it's at 2.7.
What kind of lasting effects will the cancer and treatment have on Ilaria?
She's suffered hearing loss (from the chemotherapy) already. We have the possibility that some of the chemo she was treated with may cause her an array of problems (including leukemia). All the radiation she had (from various tests)--those things themselves can cause cancer. But you do what you have to do at the moment to save her life.
She certainly has a lot of energy and seems happy now.
She literally danced and sang her way through the chemo. It started at 5:30 (p.m., and after giving her the anti-nausea medication), she'd sleep through the night. ... She was known as the nudist of 3 East, because she rarely had her clothes on. Then when she woke up, we'd literally dance to the Wiggles. She really didn't dim that much; she had her days when she didn't feel well, but it was harder on us, in some ways, I think, than it was on her.
What made you decide to do this walk?
We needed to find a positive outlet; we really didn't want to sit and wallow. ... After the story about Benny Petz (in the Arizona Daily Star; the 5-year-old died in June from neuroblastoma only weeks after setting up a lemonade stand in Reid Park to raise money for pediatric cancer research), we wanted to show that cancer isn't always a terminal sentence. People do survive and go on to play groups and reading groups and dancing around wearing dinosaur tails.
Are you surprised at the level of support you've received?
Yes. This Tucson Originals thing started as an e-mail to Doug Levy. I happen to be on his Feast e-mail list, and I remember tasting his lemonade at the Tucson Botanical Gardens. I asked him where around town I could start looking for lemonade. So, he says, "We'd normally need six months' notice or so, but we can scrounge up 10 gallons of lemonade." He then took it and ... sent it to the Tucson Originals, and I guess Janos Wilder said, "Mine's better than Doug's," and pretty much threw the challenge out to the rest of the Tucson Originals.
