It's early Tuesday morning, the third week anniversary of Liam's diagnosis, and I'm so nervous with anticipation as to what the day holds that I can't sleep. I've been up since 4:30. Liam is asleep next to me on the couch - we never made it to bed - attached to an IV and portable pump. His little body is being primed for Round 2 of chemo which starts in a few hours. We're starting this round a day earlier than anticipated. Why? He rebounded faster than anticipated from Round 1 and his blood counts are high enough for him to be able to tolerate another round of chemo.
Here was our Monday. We had an 11 a.m. appointment at the Pediatric Day Hospital at Sloan Kettering. I had been warned by a few parents that the waits at the day hospital can be long, especially on a Monday. After an 1 1/2 hour wait, we finally were summoned to the IV room. In a very business-like fashion, the nurse swooped in on Liam without any warning to access his central line. One of the things about my son that amazed me very early on is his level of comprehension. If I give him a warning and explanation about what's going to happen, he's much better than if he's surprised. Unfortunately I didn't know the game plan and didn't have a chance to warn him. Needless to say, it was a very unpleasant visit to the IV room that left me angry and in tears with the nurse and Liam completely hysterical. As I was leaving the IV room in tears pushing Liam in his stroller, several mothers who were in the Day Hospital with their children immediately surrounded me and literally held me up. It was the most amazing act of kindness and literally gave me the dose of strength I needed to regain my composure. And what did Liam want from me in order to be comforted? "Mommy - sing Twinkle Twinkle Little Star."
The Day Hospital is amazing. It's sunny, bright, open, airy and FILLED with kids with all types of cancer at varying stages. There are babies, toddlers, pre-teens, teens, and lots of parents. There are kids "riding" their IV poles as their parents push them along. There are kids running around playing basketball. There are kids who don't feel so well who are resting on couches. There are kids who are painting, playing games, doing homework, watching movies, and just being kids.
After another shorter wait, I was called to enter the bright orange door that leads to the suite of doctor offices. In the doctor's suite, there are nine teams who treat nine types of cancer. What I like about Sloan-Kettering is that each team focuses on a specific type of cancer so the team we're working with works only with Liam's type of cancer. We were greeted by Ursula, one of the nurse practioners on the team who immediately gives you a sense of competency, and another doctor who has been at Sloan-Kettering for a year as a visiting doctor from Rome. The doctor from Rome and Liam immediately hit if off, even though Liam is becoming more and more wary of strangers these days. Ursula went through a battery of questions, delivered a ton of information, and I tried to keep up while watching Liam. Here's what I took away from our conversation. He recovered faster than anticipated from round 1 of chemo so we're starting round 2 on Tuesday which is a good thing. (We don't want to give the cancer cells a chance to figure out what just him them and begin reproducing.) His LDH levels, which are an indicator of cancer, are way down from when he was first admitted when they were "sky high." He's getting the same type of chemo that he had round 1. Rounds 3 and 5 are different than rounds 1, 2 and 4 and rounds 3 and 5 are when they use a drug that causes hearing loss in 50 percent of patients.
The doctor from Rome (I'm not even going to attempt to spell his name) and Ursula are somewhat of a slap stick comedy routine. They're both staring at their computers reviwing Liam's information. Every once in a while I see full body scans of Liam's little body pop up on their computers as they're looking at him and the cancer that has found a temporary home in his body. I turn away when I see the scans - I just can't look. But they're keeping up a steady stream of conversation and basically sounding very comfortable and familiar with the situation.
After another brief stop at the IV room to get hooked up to fluids to get his body primed for round 2, Liam wanted to go see the firemen. So, off we went to the fire station. As we were walking to the station, he said to me, "Mommy, I'm really, really, really happy." And I looked at him, kissed him, and told him that I was really, really happy too.
It's 6:45 and I have to get ready to go to the hospital.
Gretchen
