At first, Melissa Lowell thought her son Nate was just tired.
“This time last year [he started getting sick],” Melissa said. “It started off, he just had a cough. It was the end of the school year and he seemed fatigued. It was nothing out of the ordinary. I just figured it was because school was over. He was leaving a teacher he loved. He gets emotional with change, as any kid does.”
But the cough didn’t go away. Nate, then 10, was complaining that he couldn’t breathe, couldn’t swallow. After a couple of weeks, Melissa and her husband Jimmy took him to an urgent care facility near their home in Herkimer County. He was diagnosed with asthma and given prednisone and an inhaler, which helped at first, but soon proved ineffective. A visit to Nate’s pediatrician July 3, 2012, suggested pneumonia.
“I asked if they were going to do an X-ray to confirm it, but they said, ‘No, we know what it is, and we’ll just treat it,’” Melissa said. “That was a Tuesday. They said if he wasn’t better by Friday to call them.”
But Nate continued to get worse. The Lowells took him to the emergency room at Faxton St. Luke’s Hospital in Utica, where doctors — still without an X-ray — confirmed the diagnosis of pneumonia.
“There is no pediatric emergency room at St. Luke’s, so they put him on the pediatric floor. The first doctor we saw said, ‘Yeah, it’s pneumonia, he just needs to stay here while it runs its course,’” Melissa said. “That doctor left and a different woman saw him and said, ‘He’s been having the same treatment for a week. There’s no way it should still look like this. I’ve got an ambulance that’s going to bring you to the PICU at Upstate. He needs to be seen by a specialist.’”
It was on that ambulance trip to Upstate Golisano Children’s Hospital in Syracuse that pediatric nurse Sharon Luke made a troubling discovery.
“When we got to Upstate, she went to the oncology floor and said, ‘I think I’ve got one for you,’’ Melissa said. “And they told us they thought he had lymphoma.”
A frightening diagnosis
Nate’s story, sadly, is not rare. According to the American Cancer Society, about 11,630 children under the age of 15 in the United States will be diagnosed with cancer this year. Cancer is the second leading cause of death in children younger than 15 years old (after accidents). About 1,310 children are expected to die from cancer in 2013.
The most common kinds of pediatric cancer are leukemia, brain and other nervous system tumors, neuroblastoma, Wilms tumors, lymphoma, retinoblastoma and bone cancers. Nate Lowell was diagnosed with a rare and aggressive form of non-Hodgkins lymphoma, Stage III anaplastic large-cell lymphoma (ALCL). The cancer caused tumors to grow on his lungs, tumors so huge they were bruising him from the inside out and crushing his airway.
“The oncologist told us that he would have died within three days,” Melissa said. “[The tumor] would have crushed his windpipe within three days. But all he had was the cough, nothing else. We would have stayed at St. Luke’s if that other doctor hadn’t come in. I just want to hug and kiss her, and I don’t even remember her name.”
Fortunately, at Upstate Golisano Children’s Hospital, the Lowells found themselves in the very capable hands of Dr. Irene Cherrick, one of the nation’s top pediatric oncologists. Cherrick said the diagnosis process varies from patient to patient depending on what type of cancer the child has, but there are some commonalities regardless of diagnosis.
“When we get a phone call from a pediatrician who’s concerned about a malignancy, one of us will handle it. There’s an attending physician on 24/7,” Cherrick said. “We talk to the referring doctor and hear a little bit about the story and their concerns. Most often, the majority of the time, the child is admitted immediately to the hospital and we’ll start the workup. Some can do the workup as an outpatient. If you can do it in an environment that’s better for the child and the family, you do.”
The workup involves a full physical. Depending on the type of cancer suspected, it may also involve a blood smear, bone marrow test or needle biopsy, in which a needle is inserted into a suspected tumor and cells are drawn out and biopsied.
Usually, Cherrick said a firm diagnosis can be made fairly quickly.
“Generally, if it’s leukemia, if they come in in the morning, we’ll know by that afternoon and we’ll start therapy immediately,” she said. “For solid tumors, it takes a little longer, but generally we know within 24 hours, 72 hours at the most. Then we’ll start therapy when we feel it’s most appropriate. If they’ve just had a big surgery, we let them heal for a while before we start the other therapy.”
Obviously, the diagnosis alone is traumatic enough. In Nate’s case, to help him breathe, a tube was inserted in his trachea, and he was in a medically-induced coma for six days. He doesn’t remember those first weeks in the hospital, but his parents do.
“My husband was a mess. I didn’t have a choice but to pull it together,” Melissa said. “Just a few days before, Jimmy was telling Nate, ‘Tough guys don’t cry.’ This was when we thought he had pneumonia. So he’s telling Nate to be tough and not cry, ‘you’ll be okay.’ All of a sudden the doctor said he had to go to Upstate, and we hear someone crying. Nate and I are looking around, and it’s Jimmy. So he just kept crying, and I took charge. I was kind of glad he did, because otherwise, I don’t know what I would have done.”
Someone in their corner
Fortunately, the Lowells didn’t have to face the diagnosis alone. Golisano provides an entire team of specialists to assist families through the process.
“We’ll set them up with a Child Life Specialist, who will work with the child and explain on a developmental level what it involves and what we’re investigating,” Cherrick said. “They’re trained developmentally, and they get involved immediately, sometimes as soon as an IV is inserted. They’re involved for support through the procedures and all the scary stuff.”
Since most pediatric cancer patients are admitted to the hospital upon diagnosis, they’ll see Child Life Specialist Regina Lozito or another inpatient specialist. Lozito will work with the child and his or her family throughout treatment until the patient is discharged for outpatient treatment, they’ll go to an outpatient specialist like Brittany Metcalf.
“They come in and they have bone marrow tests, blood draws, scans. I explain the role, what I’m here for,” Metcalf said. “The doctor will bring me in at that point to assist in talking to the patient and comforting families.”
Metcalf said her main job is to help the child through the diagnosis and ensure that they have as stable an environment as possible.
“I’m trying to make sure the child understands what’s happening, and at the same time, promote normalcy. That’s comforting to them,” she said. “My job is making sure that when they are here, they have that connection to home. We offer family-centered care. Everybody that they need is here. We help them understand the best they can through whatever tools will work best, whether it’s dolls, books, medical play therapy, whatever it is they need. We break it down for them developmentally.”
All Child Life Specialists at Golisano are required to have at least a bachelor’s degree in Child Life. They must complete an internship and pass a certification exam, and when their certifications are up for renewal, they take part in professional development.
“Children are going through a very traumatic experience. We make it the best experience we can and try to lower the trauma and the frightening components,” Metcalf said. “It’s important that they have someone in their corner. It can be scary, especially for a kid who’s never been to a hospital before. They don’t understand the language. They hear that they’re getting a CAT scan, and children think, ‘Well, a cat is a pet. How can a pet help me?’ So we explain, ‘This is what it looks like. This is what it sounds like,’ walk them through the senses of it. We make sure they’re educated and understand what they’re here for.”
In addition, the Child Life Specialists help the child’s parents and siblings through the trying time.
“It’s extremely emotional. They need support, too,” Metcalf said. “I’m mostly worried about the patient, but I’m worried about the mother and father and siblings, too. If they need the family therapist or some kind of special care, I can get them that. If I can’t help, I know who can. They’re not forgotten.”
One of the most important things Metcalf does, she said, is help families understand that they can be involved in their child’s treatment.
“It’s okay to tell the doctor to stop [certain tests] because their kid needs a break. It’s okay to ask, ‘Can I stay while my kid has treatment?’” she said. “It’s important to advocate for their child, because they know the child best. They need to understand that they can be involved in all aspects of everything that happens here.”
With siblings, Metcalf and her colleagues watch for signs of trouble like acting out or regression. They use a website called Supersibs as well as medical play and art and music therapy to help them understand what’s happening to their brother or sister and to help them cope.
“We do play with a purpose. There’s so much you can learn from playing,” Metcalf said. “We use it to figure out what kids are understanding and how they’re coping. Maybe they’re saying they’re fine, but their drawings show something different than what they’re saying. It’s important to have someone there that focuses on the siblings and the patient, make sure they’re coping well and that they understand what’s going on. A cancer diagnosis is traumatic enough without not being able to understand what’s going on and all the stuff that’s beyond their control.”
The Lowells worked with Sue, whom Melissa credits, along with Dr. Cherrick, with getting their family through Nate’s illness.
“Sue was the Child Life Specialist we worked with. She was fantastic to us,” Melissa said. . She made sure a minister came and talked to us. She explained everything, and Dr. Cherrick, too. They were very thorough. The hardest part was when he woke up and we had to tell him what was going on, but she explained everything. Jimmy and I lived with [Nate] at the hospital. We stayed in his room with him. They took very good care of us, too.”
Family-centered care
In addition to the Child Life Specialist, families also have access to a social worker who helps them address the financial aspects of treatment.
“Karen Leshko was our social worker, and before we even had an official diagnosis — we just knew it was some form of cancer — she was researching our insurance to let us know what was available,” Melissa Lowell said. “She set us up with an education consultant, and she made sure they did a PowerPoint presentation [to his school] the first day of school. They explained it all to the kids to make sure they wouldn’t be scared to be around him and so that they were informed. They explained that he would lose his hair and he might not be in school as much as he’d like to be.”
The consultant, who works directly with the child’s school to tailor an education plan to meet the child’s needs, worked with Nate’s school, West Canada Valley Elementary, to keep him in top academic form. He tested in the 95th percentile at the end of this school year, and he only missed 29 days of school in 2012-13, something his mother credits to Cherrick.
“She said, ‘Be normal. Go to school. He needs to be a kid. Don’t make him a cancer patient,’” Melissa said. “She was very matter-of-fact with us. I had my big binder of research, and I was thinking about taking a year off. But she yelled at me and told me to go back to work. She kept us normal.”
That’s the goal of the specialists at Golisano — to ensure that kids and families are still able to live their lives amidst a cancer diagnosis.
“This whole team supports not only the child, but their entire family through this life-altering event. I think we do a good job covering all the bases,” Cherrick said. “We’re working with children, so it’s vital that we have all of these supports. Especially at a time when budgets are tight and so much is being cut, we know how important it is to offer these services at no charge to the insurance company or the family.”
And though it’s a challenge, the specialists love being able to do what they do.
“It’s very rewarding,” Metcalf said. “With this population, a lot of people ask, ‘How can you do that?’ And it is a tough population. It is sad. I don’t think that it’s not. But the reward that I get out of it is much larger than the sadness part day to day. I’m being adopted into these families, and I consider them my family. I get to know them very well. I’m watching them throughout their journey and supporting them. They teach me more than I ever learned in school. It’s unbelievable how resilient they are. It’s truly magical.”
This story is part of a four-part series on families facing a pediatric cancer diagnosis. Future installments will address new technology and treatment (within the last decade) and promising avenues of research; what happens when a child goes into remission; and community resources for families and patients. If you would like to contribute to this series, please contact Sarah Hall at [email protected].
