We didn’t quite escape neutropenia…but it was as minimal as possible and didn’t include a hospital stay. We’ll chalk it up as a “W” for Liam. On Friday he was neutropenic but today, after only two shots of the really expensive medicine that stimulates white blood cell production, he was out of the danger zone. He did, though, need platelets which are flowing into him as I’m typing courtesy of a donor. When we found out Liam needed platelets, I went into teacher mode and used it as an opportunity to educate my “big boy” (what Liam calls himself) about the stuff that looks like chicken soup. We had a long conversation about what platelets are, what they do, why he needed a transfusion of them, and how they would help him. In typical Liam fashion, when the nurse assigned to him came over to start the transfusion, he immediately said, “can I help?!” He wanted his own alcohol pads to clean the tube connections and talked his nurse through each step of what was happening. Listening to Liam makes me feel like I’m watching a budding sportscaster in training perfecting his color commentary style. Of course it’s never lost on me the gravity of the situation and how the things he is describing are all part of rescuing him from cancer. After he fell into a drug-induced sleep (all transfusions require a dose of medicine that make Liam fall asleep), I sat in the open area of the Day Hospital called “the beach” that comes without sand but a semi-circle collection of chairs. I was busy chipping away at the mound of e-mails in my inbox and at one point found myself struck by the fact that I could work with the sounds of screams of children of all ages and varying degress of urgency around me. I tried to count the number of screams I was hearing but it was impossible. Cancer isn’t pretty and neither, at times, is the treatment. It’s ugly, difficult, and definitely challenges even the most upbeat person to summon all strength to stay focused on your situation and not let the stress of other situations into your world. When Liam is sleeping is the only time we can let our guard down to show how we really feel. We don’t want Liam to see the exhaustion we’re feeling….and for that matter what right do we have to feel such exhaustion considering what he’s going through?
As Liam was sleeping, I looked at his little body with one long eyelash left, no eyebrows, and hair that looks a bit like a mad scientist’s and saw an amazing little boy. He’s too busy learning and loving to realize what’s happening. Over the weekend he completely surprised us by singing almost perfectly the alphabet (when did he memorize those 26 letters?!) and every word of “Three Blind Mice.” He also recited almost every number between 1 and 20, although not quite in the right order, as he was waiting for his food to warm up and kept a running commentary of how to cook macaroni and cheese. And, he had a crying fig when we wouldn’t give him a second shot of “G” on Sunday night. He was beside himself when we told him he could only get one shot.
Mondays always bring me back to the reality of our new world. It always hits me when I pass through the doors of Sloan-Kettering how I’m leaving one world and entering another. The easiest way to differentiate the two worlds is by the conversations. The snippets of conversation that everyone hears as you’re going about your life on the “outside” tend to relate to “he said/she said” discussions. The ones inside the hospital relate to saving lives. The conversations inside and outside are discussed with equal passion but not always the same amount of energy. There are times I’m walking to/from the hospital with Liam and hear a “he said/she said” conversation that makes me smile. And then there are times I get angry at the energy being wasted worrying about such trivial things. But most of the time I just drown it out and keep moving.
This is the big week. This is the really big week. This is the week that Liam’s 29-pound body is scanned from every angle and perspective possible to see how the five rounds of chemotherapy and delicate surgery have done in killing off and beating back the cancer cells. This is the week that if I could spend every minute in prayerful meditation chanting good health to Liam, I would. This is the week that we need every collective good thought, prayer, blessing, chant, mantra sent Liam’s way to work in conjunction with medicine to turn the tide. Our incredibly brave and valiant Prince is undergoing a CT scan on Wednesday, an MIBG scan on Thursday and bone marrow tests on Friday. The information collected from these three tests will give us the most definitive picture of how he is doing. He’ll either get the green light to begin 3F8 treatments the week of June 25th or he’ll need a 6th round of chemo. It’s going to be a hard week with lots of anesthesia, cajoling to convince him to drink the icky contrast fluid needed for a CT scan, explanations for Liam about what’s happening, and pain from the sites in his pelvis where a needle is inserted to collect bone marrow. It’s going to be a lot of holding and comforting, but we’re ready. We’re ready to get him to the next stage of treatment. We’re ready for the induction phase of treatment to be completed. We’re ready to write to Dartmouth, the school I think I’m seeing in my dreams when I picture Liam walking across a field to collect his diploma, and tell them to be on the lookout for Liam’s application in 2021.
