Note: This entry is one that has taken a while to write. It was started the week 53 since diagnosis. The weeks leading up to the one-year mark were filled with many conflicting emotions. Should one be happy to note the milestone or somber thinking about the innocence lost? And on week 52, I found myself reliving every detail of week one day and night. My dreams were haunted with a constant replay of the week. My days were interrupted with reminders of the one-year mark. The shock. The disbelief. The fear. The horror. The smells. The sounds. The sounds were some of the most frightening. The words my ears heard. The sound of an ambulance siren. Hearing Liam’s cries as he was subjected to the first of many invasive, scary procedures. During that first week it took me a few days before I figured out how important it was for me to get my bearings in order to be a blanket of security for Liam. And it was a nurse named Reece who really shook me out of my daze and confused state. But it was Liam who gave me strength and who continues to give me strength every day. It is Liam who makes me confident and resolute in my conviction. He truly is my hero and I am the luckiest mother in the world to have him and his partner Ella as my children. We’re sorry for the long delay since an update. It has been a month filled with sadness for others, treatment for Liam, travel for work and the attempt to regain our life on this new frontier.
Week 53 - Can one be Ordinary under Circumstances so Extraordinary?
Our days are filled trying to be ordinary and do the things that under, well, ordinary circumstances would just be ordinary. Taking Liam to school and talking about what he might learn that day. Listening to him exclaim as we head out the door, “Today is going to be a great day!” Watching him greet his classmates and easily assimilate into a room of precious 3 and 4 year olds who have their own special language. Overhearing conversations between Liam and Ella about likes and dislikes instead of being two atoms that bump into each other. Joyously hearing Liam make connections between letters and numbers showing he’s moving to the next phase of development. Seeing him hold a crayon the correct way and practicing coloring in a coloring book. Singing “Puff the Magic Dragon” who, in Liam’s version, lives behind the trees and not by the sea. Having Liam ask me what people are talking about when he overhears a conversation as he becomes more aware of the world around him. These are all glimpses of ordinary life but how can one go back to being ordinary after living under such extraordinary circumstances?
We take every moment of health as an amazing gift and savor it slowly and deliberately. In the morning I have to pry myself away from wanting to be a voyeur watching him being an ordinary almost 4-year-old as he goes about the routine of his day in school. I want to triumphantly watch his every move to acknowledge the heroics that went into making such ordinary moments possible. If any one of the hundreds and hundreds of people who have been a part of caring for Liam made any mistake along the way, we wouldn’t be where we are today. It takes a finely tuned medical team of so many people, many of whom we’ll never personally know but see their presence in Liam’s life via initials on scan reports, pharmacy orders double checked, and blood tests reviewed to make something as simple as saying Good Morning to his teachers a reality. I want to watch him every second. I want to drink in with him every experience of living such a gloriously ordinary life. But I don’t. He needs to be his own person because, after all, we need to make sure he’s a well-adjusted member of society so that in 10, 20, 30, 40, 50 years from now he can tackle any challenge in front of him. After all, he will be here since anything less simply isn’t an option.
And then I look around and realize that nothing is ordinary. There are thousands and thousands of Valentine’s Cards from near and far all with the same wishes of good health and love. Vials of medicine and syringes invade closets and cabinets. A thick folder of medical paperwork including information on the clinical trials Liam is a part of that is carried everywhere just in case they need to be referenced in an emergency. The serial number of the medical port buried underneath his skin that is carefully wrapped in a protective piece of plastic in my wallet. The reminders of the children who were in the same battle who were lost last month. Harrison. Eden. Carter. Three bright, vivacious, precious children who should still be here and whose deaths make me profoundly sad, incredibly angry and extremely determined.
Liam and Ella love their Valentine’s Cards. Liam makes us read every one of them and when he asks who sent them, we tell him they’re from friends of mommy and daddy. He has no idea that every child doesn’t receive thousands of cards. And you know what? Every child should. Why not? Why not tell people every chance you have how much they are loved and appreciated? The cards are little treasures that we look at over and over again. And they also bolster our determination and make me say, “see – people really do care about pediatric cancer. They do want to make a difference – they just need to know how.” It’s unfathomable that so many people responded to the call including the parents of a little boy who lost his cancer battle that were mentioned in the ESPN NASCAR story about Liam’s Valentine’s project. Their letter is one I keep in my purse and is read and reread. All of the letters are going into a scrap book for safekeeping to show Liam when he’s older. In fact every letter, card, and e-mail has been saved. One day they will help guide Liam as he makes decisions about what path in life to take. Today he says he wants to be a superhero, doctor and fireman. In our eyes he already is a superhero.
And as life turns to the ordinary, the stresses of the extraordinary life we’ve been living inch away from being ever present, ever top-of-mind. And then just as we’re getting in the groove of a routine, we’re plunged back into that world of bright lights, fears, tears, trepidation, the smell of alcohol and other sights, sounds and emotions associated with the hospital. After six rounds of antibodies, I thought I had the routine down. I was lulled into thinking I knew what to expect and when. But this was a round different than any other. It started with having a very frank conversation with Liam about whether he wanted to receive the painful morning injections that begin five days before treatment and continue for the five days of treatment via a small catheter that is inserted in his arm or as a shot. He chose a shot. He hates the catheter with a passion and fights it with every ounce of his little body, something that becomes more difficult as he becomes stronger. Accessing the catheter is similar to having to thread the eye of a small sewing needle as you line up the tip of the injection and insert it into the equally small opening of the catheter. It’s a wretched experience with Larry tightly restraining Liam as I clean the catheter with alcohol and then carefully insert the needle into the catheter opening to inject the medication. Liam screams and thrashes the entire time and then insists on being held by the person who administered the injection to be consoled. He never rejects me even though I’m the one who is inflicting the pain. But if he wanted to forgo the insuflon, it meant I needed to learn how to give an injection. I learned by practicing on nurse Connie’s arm. She showed me what to do, but she didn’t really need to show me. It’s something I’ve watched countless times over the past year. When it came time to inject Connie, I was sweating and queasy with anticipation. Me? Give someone an injection? I told her I couldn’t. She asked me if I wanted to practice on her or have Liam be my first injection. I opted to practice on her. And when it came time to give Liam the injection, it was much more difficult and easier than I anticipated. I hated piercing his unblemished, delicate skin that is so warm and soft. I hated being the one inflicting the pain. I wrestled with wanting to push the medicine in as quickly as possible and trying to do it slowly so that it wouldn’t burn. As soon as it was done, he wanted me to wrap his soft yellow blankie around him and buried himself into my neck while he wrestled with what I’m sure were feelings of personal invasion. And for the next nine days, I repeated the dreaded task of giving him a painful injection.
The seventh week of antibodies was tough. Liam has never needed all of the narcotics available per session. He has never had residual pain that prevented him from sleeping at night. This week he did but it took until Wednesday to figure out the right amount of pain medication to keep him comfortable. From Monday until Wednesday, he was in agony wanting to be held, carried to the bathroom to throw up, held, carried from one place to another he thought he would have more comfort. And after rejecting yucky liquid pain medication, he was finally convinced to take pain medication via pill form. It wasn’t until I explained to him that the pill was the same as “Vitamin B”, the pill he was familiar with taking to ward off a particularly nasty pneumonia people with compromised immune systems are susceptible, that he started taking two narcotics and a third “feel good” medicine at night for relief. The good news is that the pain means the antibody is still effective. The bad news is you have to watch your child suffer. Of course as a vigilant parent searching for explanations, I wanted to understand the meaning behind the extreme pain. After all, after six rounds of antibodies I considered myself familiar with the process. But why was this one so extremely different? What did it mean? Was it good? Was it bad? But there was no explanation other than it just is what it is. And again during this tough week, we were reminded about the importance of friends and family support. Meals that were brought were inhaled in the three minutes we had available between cries of pain, and special packages like the one from a family in Canada sent to our Petit Prince served an incredible boost of support. Their letter is also one that is carried in my purse along with postcards from our London friends. The week is over, Liam is back at school, and we are trying to live “normal” life. But the calendar shows we have three weeks left until the next round of scans where his body is scoured for cancer. As far as we have come, we still take life one day at a time and try to live each day as gloriously ordinary as possible.