It’s 12:57 a.m. Day four of a week of antibody treatment, day 10 of 10 stressful days in a row. OK. I’ll admit…sometimes this is tough. There, I said it. OK…I’ll add to it…sometimes it’s really tough. The stress of trying to act normal in front of your child in a completely abnormal world; the stress of waiting for test results; the stress of keeping up with work; the stress of not letting anything fall through the cracks from grocery shopping to bill paying; the stress of watching your child writhe in pain during antibody treatment even though you know that treatment is helping him; the stress of having to hold him down to get a painful injection while he’s screaming at you and fighting with every ounce of energy to not hold him down (DON’T HOLD MY ARMS!!! DON’T HOLD MY LEGS!!!! STOPPPPPPP!!!!! NOOOOOOO!!!!!); the stress of hearing about other children who are not doing well; the stress of not feeling like you’re doing enough, fast enough to help find a cure; the stress of having to tell the cab driver almost every day to pull over RIGHT NOW so that I can let my son throw up with his head hanging out the door while cars are angrily honking behind you; the stress of figuring out when the best time is to give him a flu shot during a week of lots of shots; the stress of not being there for my daughter whose 2nd birthday is this weekend and no party has been planned; the stress of sitting with Liam through a follow-up hearing test to see if chemo caused any damage and finding out he has mild to moderate high frequency hearing loss; the stress of wondering why a person you don’t really know that well but who you know is aware of your situation literally turns her back on you every time she sees you making you wonder what you did to cause such a reaction; the stress of hearing and seeing other people’s pain who are dealing with cancer but not letting Liam see that stress; the stress of hearing Liam ask why someone wasn’t being very nice to us and realizing he’s beginning to understand people’s actions; the stress of dealing with departments outside of pediatrics that don’t have the same empathy as pediatrics; the stress of trying to let things just roll down your back and not let them get to you; the stress of hearing my son continue to be in pain at 1 a.m. but refusing to take pain medicine because he thinks it’s going to taste yucky; the stress of stress; the stress of the unknown…it can get to you.
Liam stories from the week.
On Monday he insisted on going to the new and improved gift store. As he said, “let’s go there and find some stuff I really like and get it!” OK, Liam, considering what you’re dealing with this week…that’s a fairly simple request to honor. What did he pick? Two balloons…one for him and one for Ella. He picked a Pooh Bear balloon for him and a Tigger balloon for Ella. He couldn’t wait to get home to give her the Tigger balloon. He fell asleep almost every night this week with a hand holding onto his Pooh balloon.
Today he decided that when he has show and tell, he wants Ella to be his show and tell because Ella makes him laugh.
He deals with the pain of antibodies slightly different these days…the room has to be dark, quiet with no TV on and with as little sound from voices as possible…except when he asks me to sing Twinkle Twinkle Little Star.
He has fallen in love with the book, “Curious George Goes to the Hospital.” He wanted it read to him over and over and over again this past weekend and every day this week. The first time it was read to him, he stopped me after the page about the operating room was read and said, “Mommy – I’ve been to that room…I’ve been there with Dr. LaQuaglia (or as Liam says, La-quak-luh).” I quizzed him a bit but he said, “Mommy – I was in that room…without you or Daddy…and the room was white with bright lights and a table.” OK. Does he really remember? If you’re an OR nurse, tell me if the OR room Liam was in was white and if he was awake when he was carried into the room.
Super soft, yellow blankie was returned. The cab driver brought him back to the TLC office. It was filthy with ground in dirt from passenger’s wet and city-street dirty shoes stepping on it….but after Larry thoroughly drenched blankie in a new bio-friendly cleaner and washed it…it looked like new. Liam is very happy.
Ella greets Liam every night very excited but very cautiously. She tries to do anything she can to make him more comfortable. Last night he called out to me while I was standing in the kitchen inhaling food that a friend brought to rub his feet. Ella ran to him and immediately started to rub his feet and cooed to him to feel better.
