I hate to admit it, but today was one of those tough days for me. My cup of frustration runneth over and the tears that I normally keep in check, flowed uncontrollably. As we waited to be seen in the IV Room for a CBC and dressing change, I held my tired son in my arms with my head resting on top of his and tears streaming down my face. I tried to stop them but just couldn’t. And the more I tried to stop them, the more they flowed. It was one of those crying sessions where there was no noise, just tears. It’s so hard to see Liam so skinny, so tired, so listless. It makes me feel helpless. He has been nauseous since Thursday night and now is nervous to eat. We just want the nausea to pass and have him regain his appetite so that we can fatten him up. He’s just not hungry and often when he does eat, it winds up coming right back up. I suppose the tears are also related to the stress that’s beginning to mount in anticipation of the tests on June 13, 14 and 15. And while I feel really good going into the tests, I am not looking forward to putting Liam through the process. But knowing my son and how well he accepts challenges, I should be more confident of how he will handle it.
Day 10 since the beginning of the 5th round of chemo and Liam is still not neutropenic. This might avoid neutropenia this round which would be so nice. Other than being extremely tired and nauseous, he’s doing very well. Before we left for the hospital this morning, Liam asked if there were going to be stickies (what he calls a dressing change). The first time he asked, I avoided answering the question. The next time he asked, I told him yes. When it came time for his dressing change today, he didn’t cry. He was amazing. He helped me and Nurse Kate put whisk (the stuff that loosens adhesive) on his bandages and stayed calm throughout the entire process. Nurse Kate couldn’t believe how calm and helpful Liam remained. (She has changed his dressing before under different circumstances.) Other nurses poked their heads in to look at Liam in disbelief at how calm he was. He talked Nurse Kate through the whole process and kept assuring her that the bandages were coming off. We stopped in to see one of the surgical team nurse practicioners to have her look at Liam’s surgery incision and in the room was Chester, the mannequin we practiced dressing changes on Monday. When Liam saw Chester, he said “Look Mommy – It’s Chester!” And then asked Chester how he was doing.
Today was prom day at the hospital. For the past few weeks there have been racks and racks of prom dresses in the play room and a buzz of excitement as patients, moms, nurses and other hospital employees try on dress after dress in search of the perfect one. As we waited in the IV Room, taffeta being worn by every walk of hospital life swished by. The prom was held from 10 – 1:30 and included all the trappings of a prom…DJ, photographer, vidoegrapher, snacks, favors like flashing rings, and lots of sweets. We weren’t going to go, it just wasn’t a day we felt like celebrating, but Liam wanted watermelon which is served in the cafeteria which is where the prom was held. We stopped in, saw Zachary and his mom who had been looking for us, and decided to stay for a bit. Liam wanted to see the DJ, his first time seeing a DJ, and decided that there was one person he wanted to dance with…Dr. Bovine, his favorite clown. Liam reached out his hands to the man who makes Liam’s eyes twinkle, and Dr. Bovine protectively held Liam in his arms and gingerly swung him around the dance floor. There was a lot of joy and happiness in the room, along with IV pumps and wheelchairs, but we were just too tired to really enjoy the festivities.
We swung by the fire station to see “the guys,” and of course Liam asked for the saws to be started. Thankfully, “the guys” haven’t reached their saturation point of demonstrating for the umpteenth time how the wood saw and metal saw works. He also asked for some “Fireman Chocolate Milk” which was personally mixed for him. He sat on the counter drinking chocolate milk out of big boy cup while watching his heroes.
To top off his day, we stopped by a construction site on the corner where our city home is located. A 54-floor building is under construction and Liam is fascinated with the backhoes, diggers, dump trucks and other pieces of big equipment at the site. To my surprise when we arrived at the site a few of the workers standing at the entrance gave Liam a friendly greeting. They recognized him from all the times we’ve stopped to look at the site on our way to catch a cab to the hospital. Wait – isn’t this the city that people can be forgotten in a New York Minute? Liam was in awe watching one of his favorite videos come to life in front of him.
We’ll be back at the hospital on Friday for another CBC. Our fingers are crossed that we’ll avoid neutropenia.
