This Is What You Learn About Parenting When Your Baby Goes To The Cancer Ward
Hard won wisdom.
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It’s 10:17 AM and the play room is now open in the Hematology & Oncology ward at Miller Children’s Hospital in Long Beach. One by one, kids file in with a parent and an IV bag on wheels behind them, heading for a shelf of books or an arts and crafts table or the TV with Nintendo Wii. The volunteers from Child’s Life offer a greeting and help them settle in if they need it.
We are home now, but we were there, in the play room, last Tuesday andWednesday, 3 times a day at least. Claire liked the toy shopping cart, the plastic kitchen set and the battery powered Volkswagen Beetle convertible the best. A thick brace covered her right hand and wrist so she wouldn’t fiddle with the IV tube but she did as much as she could anyway. She tried to pick up stuff that was way too heavy, and then laughed when it fell out of her stifled hand and crashed to the linoleum. Three times a day, for 2 hours at a time, it was easy to forget that Claire was a patient.
“They said they don’t think its leukemia.”
This is what Nikol said to me, over the phone on Monday afternoon, between sobs, as she explained that the pediatrician advised us to take Claire to the emergency room and prepare for an overnight stay. “They think it’s probably something called ITP.” Blood work hadn’t come back yet, but the pediatrician was pretty certain that doctors would want to monitor and treat Claire. I jammed my laptop into my bag and rushed out the door to meet them at the hospital.
A wave of panic set in, but it was a slow wave — like one starting out in the middle of the ocean and gradually gaining steam as it made its way for shore. The seriousness needed time to build and grow. The guilt did not. The guilt came in bolts of lightning.
I should have listened to Nikol. She raised questions about Claire’s unsightly bruising 3 days earlier, and I said she was just a kid learning to walk. She asked me to pick up medicine the next day as they got worse, and I said she probably needed more iron. She wanted to call the doctor the next day, and I said let’s give the medicine time to work. She called the doctor the next day, and we were in the ER that night.
I thought hard about how I could have gotten Claire medical attention earlier. I also began to think about how much an ER stay would cost, and whether I would have to miss any work, and what about the test car I was driving to the hospital that had to be back in 3 days, and lots of other things that immediately embarrassed me as the light of my life might be battling cancer. These were just lightning bolts, but each one made the coming wave stronger.
We were ushered into an ER room and wrapped Claire in the smallest gown they had that still hung over her tiny body like window drapes. Doctors and nurses came in to explain that they would be taking blood and we should prepare for a 3-night stay – much longer than we expected; Nikol had only packed us for one night.
I saw that trust, and that innocence, erode and dissipate and finally lift out of her body and float away, never to return.
But before any of that, they needed to take blood and insert an IV so she could be treated. Up to this point, Claire had bounded around her crib, playing with toys and fiddling with the gown and smiling enthusiastically at the nurses. Nikol and I nodded, and laid her down, and held her left arm and leg down while one nurse held her right side down and another looked for a vein.
Claire lost it. You could see the look of fear and confusion in her eyes as she screamed in protest and looked to us for some form of help or rescue. She watched the nurse prep her vein and then turned back to us with tears emerging from her eyes in helplessness. It was, by far, the most heart-wrenching thing I have ever seen in my life. I tried to say “Shhh,” and “It’s ok, you’re doing great,” and rub her head and hold back my own tears. But every few seconds she would look into my eyes, pleading, but I was helpless too, and soon I was bawling along with her.
After 5 minutes the nurses were finished and Claire bounded into Nikol’s arms. The nurses said they would be back and we would be moved to another room soon, and I said thank you and they left. Claire was now sucking her fingers, clinging to Nikol, sobbing gently as she watched the nurses walk out. She hadn’t lost her trust in us, but no nurse would get close to her again without hearing about it. I saw that trust, and that innocence, erode and dissipate and finally lift out of her body and float away, never to return, and I plopped down. The wave crashed into the shore like thunder and I pressed my shirt against my eyes and heaved with tears. Part of it had to do with her whimpering. Part of it had to do with the fact that we had 3 more nights of this. At least.
My mom and her husband drove down and brought us dinner and snacks, then went to the apartment and brought back socks and a sweatshirt because they keep hospitals freezing cold. We settled into our room on the third floor of what we wouldn’t discover was the Jonathan Jaques Children’s Cancer Center until morning. Nikol and I traded shifts between being solid rock, and withering puddles of water vapor — almost nothingness, barely there, like being swept out to sea. They kept Claire awake until 10:30 PM with checkups and then she finally fell asleep.
Every night, nurses would come into the darkened room while we slept and check on Claire. Sometimes, it would be without incident. Mostly, it would be a fiasco. Claire refused to be touched or approached by any nurse. Tape a heart monitor to her toe? Nope. Put a thermometer in her armpit? Nuh-uh. Stethoscope on her back? Negative. And you had better bring backup to hook Benadryl or the IVIG treatment to her arm. We slept periodically, curled up together on the chair with a pull-out footrest, or me on the chair and Nikol in the crib with Claire. It was actually a generously sized room, with a private bathroom and tons of space — probably because many patients that need a room, need it for a long time.
The next morning, Nikol’s mom drove down to be with us. It allowed Nikol and I to run back home and shower, and change, and pack appropriately. Claire took a two and-a-half hour nap and still slept when we returned to the room. Nikol and Gabriela went downstairs to hit the cafeteria, and Claire soon woke up and saw me and smiled. I grabbed her and we played, and we cuddled and watched Doc McStuffins, and I sang her songs and tickled her neck rolls. A nurse came in to change the sheets.
“Are you… new?”
“Um, no. I’m Claire’s dad.
“Oh, so you must have shaved or something.”
“No, we went home real quick to shower and I think I just don’t look like a bum anymore.”
“Oh… no. You didn’t look like a … like a… a bum.”
That day was a good day. By then, we’d learned that Claire had ITP, not leukemia, and that although her blood platelet count had fallen to a dangerous 11 the previous day, it went back up to 17 by the time we got to the ER (a healthy adult has at least a 150 count, and there is risk of brain damage under 10). They wouldn’t need to test her bone marrow, either. So we had reason to be optimistic that the treatment would get Claire back on her feet quickly. We made use of the play room and Claire made quick friends with some of the other patients and their families. Nikol’s dad came down to join us, and my mom and her husband came back again to lend a hand. I was feeling pretty good about making the best of the situation, and going home on Thursday.
As I headed out to pick up dinner for the growing crowd in our room, I stepped into the elevator with a tall, dark-haired man. I had seen he and his wife in the halls and the play room, playing with his daughter who looked about 6 or 7. She had thinning hair but was very pretty, though she didn’t smile much. He pressed the Lobby button and nodded at me, which was the closest I’d seen to a smile from him all day. “That’s your daughter?” I asked. He must have thought I said, “How’s your daughter?”
“Oh, you know,” he said. “Good days and bad days.” This didn’t look like a good one, and he quickly knocked me off my perch. He told me his daughter suffered from acute myeloid leukemia, that she and her mother had moved to the United States from India just 2 months ago, and that it was painful to leave them every night and sleep at home before work. He told me all about it as we walked out of the elevator, through the Miller Children’s lobby and out into the parking lot. There, he stopped and faced me. I didn’t know what to say, whether words of encouragement would even help. “Well, she’s a very sweet girl,” I said. “And this is a great hospital.”
He agreed that it was, and then said goodbye and turned and hurried off to his car. He didn’t ask me about our stay and I found myself extremely grateful that he hadn’t. Claire was going through something scary; that family was, and still is, living a full-blown nightmare. I thought that I should have at least asked his name, then changed my mind. This wasn’t a social setting, really, and how much would it sting to connect with someone whose daughter would leave the cancer ward long before yours? What wisdom had I gained in less than 24 hours that could have helped steer him through a living hell?
What wisdom had I gained in less than 24 hours that could have helped steer him through a living hell?
I remembered that earlier that day we plopped Claire into a tricycle and paraded her around the halls. She loves wind in her face, that little speed demon. It raised her spirits and ours. Nikol told me when we got back to the room, though, that she overhead a little boy in his room telling his mom he wished he could ride one around. Now, completely deflated in our idling SUV, I wondered how many other kids had watched Claire and wished they had her luck. No tubes. No wheeled stand to drag around. No hair loss. No pain. Just an IV and a little wrist brace. I texted Aaron on the way to pick up dinner: “It’s just hard to share space with kids that aren’t going home,” but then immediately felt guilt for thinking it. Hard for me? Poor me.
“We’re so lucky.”
That night, Claire had a giant fang of a tooth coming in, which kept her awake and screaming straight through the Benadryl, and filling the time between screaming through nurse checkups and thrashing around so much it interrupted the stream of medicine flowing through her IV. They took more blood to monitor her platelet count. She finally fell asleep around … I don’t remember now, maybe 3:30 AM or so. Nikol slept in the crib again.
We woke up around 7:00 AM or so, out of habit, and cleaned the room while Claire caught up on sleep. The hematologist would see us in a couple of hours with news of her progress. Suddenly, a nurse poked her head in and asked if she could talk to us. We would have to wait to speak with the hematologist to be sure, but Claire’s platelet count had been reviewed. They wanted to see the number rise over 40. After two nights of treatment, it was at 93. It was sustaining itself. “I knew you’d want to know,” she said. We were going home the next morning.
Nikol and I collapsed in each other’s arms. I can’t express the toll that this had taken on Nikol. She slept sporadically, crammed inside the crib with an oftentimes-screaming baby, waking whenever Claire wanted to nurse, and being the main person holding her when nurses needed to check or stick her. In a total of 60 hours at the hospital, Nikol left Claire for maybe 90 minutes. Her constant presence was clearly keeping Claire calm, and soothed, and relatively sane. Any good mother would rise to the occasion with something like this, and Nikol met that challenge in a way that inspired me, and made me fall deeper in love with the strongest, most incredible woman I’ve ever known.
We stayed clamped onto each other and wiped away the other’s tears and whispered how happy we were. The whole ordeal had been an emotional trip that stretched and warped and melted time itself, and even the great news that we were going home was a shock to the system. We were tired and mentally prepping for 10:30 AM. We weren’t ready for great news at 7:30. We would take it, though.
That day we had a lot of visitors. Nikol’s parents came again to keep more smiles on Claire’s face, and I reclined on the chair and closed my eyes. When I opened them again, Ellis and Gabriela had left, our good friend Teresa had come and gone, and another good friend Lora had arrived. Play time. When she left, another good friend Sara and her adorable daughter Savannah came to visit. Play time. Aaron, Kristen and their tiny Dr. Hailey sent Claire a bear and a beautiful balloon that she insisted on bringing everywhere. My dad came to visit and he and Claire spent two hours giggling at each other. Before long, though, it was just the 3 of us again, bundling up in the frigid hospital room with Spongebob and some leftover teriyaki chicken.
“We go home tomorrow,” I said.
“Crazy,” Nikol said. Escape was just hours away.
Not close enough, though. Just before bedtime, Claire finally got the better of her wrist brace and unlatched the velcro, fiddling with her now-exposed IV tube. I grabbed her and Nikol fitted the brace back on, but when we told the nurse about it, she said they would need to reinsert the IV. Basically, start from scratch.
They weren’t ready to insert a new IV yet, so we put Claire to bed. In just a couple of days in the hospital she had already grown accustomed to later bedtimes and to constant contact with us, so she screamed and wailed as we turned off the lights and stood outside her door, waiting to hear prolonged silence. It took about 15 minutes, but her tired eyes finally relented. When we walked back in the room, Claire lay face down in the crib, knees tucked in, butt high up in the air, clutching her balloon in her right arm. She had pulled it through the bars, and now the string rose from her like a sunflower and the balloon itself hovered above the hospital crib like a halo, keeping watch over our sleeping, recovering daughter. It felt like a miracle. It is probably the most beautiful thing I have ever seen.
We went through it all that night. They re-inserted the IV, bringing Claire back to wailing, frightful waterworks. Then she slept, and woke up again, screaming, when they hooked the Benadryl up. Then she slept, and woke up again, screaming, when they started the flow of IVIG treatment. Nikol slept on the lounge chair and I pulled two desk chairs together and tried to ball up in them. It was 2:00 AM. That night’s nurse had the squeakiest shoes, like twisting a dog’s rubber toy, and she came into the room every twenty minutes. Sometimes more, if Claire moved a muscle and the IVIG flow automatically shut itself off.
She checked Claire’s temperature with the armpit thermometer, but couldn’t get a valid reading so she would stick the metal tip between her arm seven or eight times in a couple of minutes. I asked if it was really necessary to tempt fate with a tired, frustrated baby. She said it was. Around 3:30 AM, during the fifth or sixth attempt of that round, Claire opened her eyes and looked at me. I looked back. Neither of us moved, until I slowly shook my head and silently begged her to ignore the nurse and go to sleep. Claire looked at her mother across the room, fast asleep in the dark, and closed her eyes too.
As parents, you have to be willing to trust in yourselves and your kids when things get tough.
Nikol got a couple of hours of sleep, and I got less than 2, but we made it to Thursday morning. The nurse came in and removed Claire’s IV. The hematologist scheduled a check-up in 2 weeks and signed us out. I went to grab the car while Nikol carried Claire and finished packing. At 10:35 AM, we strapped her into her car seat and left hospital grounds, profoundly grateful for her health and our freedom, and the gentle care and quick treatment from the entire Long Beach Memorial and Miller Children’s staff. The… I don’t know… relief, I guess is the best word, was unspeakable. “Did that really happen?” I asked. Nikol just shook her head.
We accidentally left the balloon behind. We left the name tag that Nikol had colored and taped to the door. We left the “Who Am I?” questionnaire that listed Claire’s age, favorite TV show and best friend and other things. Lots of other kids had this posted to their doors, too. On one, a 15-year-old boy had written “When I get scared, I … (Cancer fears me!)” I hadn’t seen a 15-year old boy around. I wondered if I just missed him during our stay. I wondered if he was unable to leave his room. I wondered if people would see the nurses take Claire’s posters off the door. I wondered what other kids would say if they asked where Claire was and heard that she got to go home. Some of them are far too young to understand why she would get to go home and they don’t. Or, even worse, maybe they’re not.
Claire is doing great. Two days after leaving the hospital, she was walking around the Long Beach State campus and Rancho Los Alamitos to take her birthday pictures. The day after that she wandered around the OC Fair, petting farm animals and getting drenched in water fountains that gushed up from the ground around her. The day after that she was back in daycare.
Did that really happen? Did Claire’s immune system really just put her through a physical and emotional ringer? Did she really just tackle it head-on with a smile and emerge not only ok, but better?
She did, and hopefully we’re never forced to watch her go through it again. As parents, you have to be willing to trust in yourselves and your kids when things get tough. Kids get sick sometimes, they get hurt and they need help and they go to the hospital sometimes. I once got a metal pipe stuck in my forehead. My sister had several long hospital stays during her early battles with asthma. Many others go through much worse. It’s awful, but you go through it and you do what you can and hope for the best.
What we have in Claire is the best. What she went through demanded everything of Nikol and I, and forced me into deeper thinking self-evaluation than I’ve ever delved before. She expanded our emotional and mental horizons and made us stronger as a family and a team. She is a treasure, and I have to be worthy of her from now on.
We’re so lucky.
Ryan ZumMallen is a sportswriter and automotive journalist living in Long Beach, CA with his wife and daughter. You can find him on Twitter at @Zoomy575M and read more of his fatherhood and parenting blogs, here:
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