The Christmas decorations in the Massey Cancer Research Building at the Medical College of Virginia in Richmond were lame. That’s what I thought. Christmas up to that point had been a game of buying the maximum amount of joy with what little money was left over from my husband’s twice weekly paycheck after living expenses. It was already hard enough to balance the love you have for your children with the grading scale of presents every year. There was no holiday bonus. There was no anniversary trips. We marked these occasions together and betted the kids would just have fond memories by the time they reached their mid 20s. After all, isn’t that when most people come to terms with having a less than stellar childhood? If nothing dramatic or off the charts happens you are free to move on with the ambition of giving a better life to children you may one day have. No one wants to be judged as a parent by Christmas gifts. The day the surgeon refers you to a group of oncologists is not the day you want to reevaluate how much happiness you are responsible for in your children’s lives. Believe me.
“This is for you, Nicholas.” An unwrapped, unopened Sony Walkman CD player. Red. Thanks. Uh, Thank you very much. Still, he manages to be polite. “Would you like some pizza? It’s pepperoni! Delicious, I must say.” I think this woman is batshit crazy. She has curly graying hair, crooked English teeth, a played up (maybe not, but my cynicism is in overdrive at this point) British accent. She is wearing a smock. Well, of course she is, it’s a damn children’s hospital. It says her name is Jackie on the shoulder, written in bottled glitter paint. She’s a little short, aging. Maybe she was taller 15 years ago. How long has she been here? And why don’t accents fade. I must have rolled my eyes one too many times. Refuse pizza from the fairy lady and she will pursue you. They must learn that in the back room somewhere. I thought, “she must be well practiced, we are an easy mark.” It’s almost Christmas. The decorations will probably come down after the break that happens in appointments. Surely, I assumed, hospital staff takes a break. Like the school, like the banks. Right? Everyone gets a break for the Christmas fun happening out there in the city. There’s hallways with no lights. The cleaning crews have extension cords running down the center of rooms. It smells of windex. Our daughter is restless. She’s an infant, an eternal infant. I had already had a heavy dose of what fairness is when she was born, seizing and writhing. Cerebral Palsy would be a daily reminder of exactly how fair life could be. This place, these people, the diagnosis is completely beyond her. For the next two and a half years, she would travel the halls of MCV, walk the floors through the night hours, sleep in my arms, oblivious to the reason we were learning exactly how unfair life could really be.
“Are you ….Mother?” Jackie so Mary Poppins’d me. Yep, that’s me. She wanted my name. For what? How many more people are going to pretend to be my best friend while we are here? How many of these nutty Jackies are there? For fuck’s sake, she’s a volunteer. I realize we probably have that deer in the headlights look, but maybe leaving us alone would be good too. (I came to recognize that deer in the head lights look over the next two and a half years. How do you smile at people whose teeny little baby has just been diagnosed with a tumor on some part of their head? What kind of universe creates that scenario? )
“May I hold your hand, dear?” Oh my god. Just hold hands and she’ll go away. Just think about the awful pizza she is trying to pawn off on you. Maybe she has a quota of pizza she has to give away and that’s why she’s the only badged person around. “Of course,” I offered my left hand. She opened my palm with her wrinkled white hands, very slowly. The room kind of fell away. I fell away from my family and she locked eyes with me. She had reached into her smock with it’s giant pockets and retrieved something. “Close your eyes, dear Mother.” I complied. Ok, she’s maybe kind. I guess this can’t be so bad. It’s certainly not creepy. Her hand pressed into the center of my palm and she closed my fingers. I didn’t feel anything in my hand. Oh, she’s good. I am not going to cry. There’s no reason. We have to finish this appointment. It’s been a long damn week with the surgeon and Nick’s biopsy was hell enough. What an insult. When people get these serendipitous series of events that culminate in glorious outcomes, we were sitting in the dark waiting room at VCU while a surgeon confirmed a Ewing’s Sarcoma that should have been ruled out many months before. “Now, in your mind, make a wish.” My eyes were glued shut. Tears falling over both of us. I wasn’t breathing, just crying. A wish. Yeah, I wish for my son to come out of this on the other side alive. She offered me a gentle hug and went away. Glitter, she had put glitter in my hand. You know, that stuff that comes home on your kids art work? That sticks to everything? That follows you around and shows up in the least convenient moment? THAT stuff. Over the next two and a half years, I would find a single speck of glitter mostly when I needed to find it. It was the only reason I was ever able to smile at a strange mother, holding her tiny baby, coming down the elevator with that deer in the headlights look. The glitter on her shoulder, on her husband’s sweater….even in July. Cancer got them. The fairy got them too.
I learned , perhaps, more than some med students learn in those 2 years. I came to recognize the pitfalls of treating childhood cancers from several points of view. I made new friends….that was the rule. We are all on a sinking ship, might as well be friendly. I watched marriages wreck into the rocky shores. I watched my own son beg to stop….he just wanted to stop. I saw police activity in the ER when shootings occurred in the parking lot. I learned how to get from building to building down hallways without having to step out into the filthy streets. I came to love the food trucks, hate insurance and damn anyone who would stand in my way where my sanity was concerned. I witnessed horrible policy directives, first hand. I wasn’t allowed to stay overnight in the hospital with my son. “That’s the rule.” Despite the unused 3 rooms with brass plaques on the doors that read, “Donated by McDonalds.” Yes, the same McDonalds that was so conveniently located in the lobby of the largest Childrens Cancer Treatment Facilities in that part of the state. The same facility that offered Donut Tuesdays!!! for breakfast on Tuesdays. I never could make them understand the absurdity of that. I did get them to agree to take canned soda off the galley menu for Pediatrics. I wish I were kidding. I wish I was remembering it wrong. I wish I hadn’t grown weary of attending funerals. Joshua’s was the last funeral. He was four. He looooovvvveeeed to see Addie. Right up to the very end of his pallative care, he was happy to see Addie. Joshua knew nothing of the unfairness, having Down’s Syndrome offered him the ticket out without the fear. Leukemia took Joshua and his was the last funeral we would attend. We started being able to tell who was next. Like that awful cat that comes and cuddles up to the next recipient of the boat outta here in the nursing home. I was not someone you wanted to be friends with. Reality was smacking me upside the head and I was not interested in the fairy way to deal with it. Nick assumed the responsibility of monitoring nurses and doctor’s hand washing and sterile procedure habits. His life was on the line and no one was allowed to dork with it. I got to tackle his nutrition. No easy feat when he was vomiting 25 of 30 days in a month. The 2 week rotation in hospital was the most difficult. I had to pack his food in. Social workers regularly gave me a talking to. They were not amused at me squeezing essential fatty acids into his mouth. But, they also couldn’t understand how he was avoiding the need for transfusions either. Most of the time, he held his own, despite the 179 stapled incision to remove his right illium. Despite his dad’s job loss after 8 months. Seems we had breeched the 1 million dollar mark. The company was threatened with letting the employee go or the whole group would go. Look in the dictionary. Look up the word unfair. My picture is there. I am standing at the pharmacy counter in the middle of night, having been discharged from the hospital in the pouring rain. The Pharmacy Tech is asking for $4,625.00 for the rescue injections the physicians have prescribed. They cost $462.00 a dose and they are required for the 10 days following chemo. Chemo ended that afternoon and CVS wants that ridiculous amount of money, in cash. PT mentions, they also take Visa and MC. Yes, but those got run up driving the hour to and from the hospital. There are no free medicines in cancer treatment, in case you were wondering.
Did those few paragraphs just run together like I think they did? That’s exactly how it happened. One minute, you are watching your kid on the soccer field, trying to negotiate what was for dinner and the next you are threatening a CVS employee for drugs you know you can’t pay for.
December 2001, we stopped and paid close attention to what was going on around us. The quiet of the hospital is not something you can explain to people. The absence of those you expected to help you is deafening. The dinners dropped at home by friends becomes a saving grace. The fostering of our new dog by friends, remarkable. The falling away of our church, perhaps inevitable. I stopped believing in God then. It took a little while, but I came to see that if God could, he would light a fire under someone in that parish of 5,000 people. What happened instead, was that we became invisible. Our families didn’t visit. 3 Cards came. A woman from a friend’s church in town felt the need to buy us Christmas presents. She also felt the need to bring her kids over and run amok in our already fragile house. I swear you couldn’t make this shit up. We spent every dime we had. Borrowed against our house and ultimately would lose that house to the falling economy in a short sale. Life became , to us….what it was NOT. It was not presents, or gas money, cell phones, medicines, insurance. It was warm food dropped off in the snow by Glenda and Mimi. It was the constant worry that one of our other 4 kids would need something as big as cancer and what would be left to give? It was knowing our dog was safe at Cathy’s. (even if she was driving them batty.) It was my Addie’s cognitive deficit, she would never really know what a mess this was. Life was worry, real worry about the balance between living cells and dying cells. It was about understanding the danger in a gram negative soil borne bacteria. Life was watching my son breathe but once in an entire minute. Life was the understanding things just aren’t fair. Life was the late night phone calls to Joanne. It was the lack of thought that we wouldn’t all pull out of this. Somehow.
Remember, I had wished it so. And Jackie promised. There, if there was a God, there she stood, dressed in a blue smock, full of glitter.
Towards the end of our 2 and a half years, we had grown accustomed to the hallways and the staff. We had all set our lines in the sand and learned to respect each other. I spoke to the incoming class of residents that Spring of 2004. This was something I was surprised to be asked to to and as ill prepared as I was. I didn’t know what to do with my hands while I spoke. I didn’t know where to look, the auditorium was dark, I could only make out silhouettes of lab coats. I told them how important it was for them to appreciate the role family plays in a child’s experience. I told them how honored I was to meet each of them in our room, no doubt we had seen every one of them at some point. I told them I hoped they would remember that the most important feeling of having cancer is to feel worthy of making out the other side, alive. I wonder if my words still ring in anyone’s head as they go on morning rounds. One physician stands out among the pack. She was a mother of 3. She understood the mama bear syndrome, perfectly. She began her undergrad studies at the age of 48. We met on rounds one day. She knew what it was all about.
Towards the end of our time there, we attended Jackie’s retirement ceremony. It was held in the HEMOC Clinic. She wasn’t sad to leave and we were happy to send her off for some time of relaxing. How did she look these newly bruised families in the eye and offer that kind of hope? How did she do that for 35 years? What the hell was in that glitter?