A Caregiver to a Child with Cancer
- Singer Michael Bublé’s career suddenly halted when his son Noah, now 10, was diagnosed with liver cancer at age 3.
- Noah is now nearly 5 years in remission, and Bublé, a father of four, continues to share the important lessons he learned as a caregiver to his son.
- Assuming the role of a cancer caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer comes with a unique set of responsibilities and can be extremely challenging. The first thing to understand is that there is no shame is asking for help.
- Through interviews with expert oncologists, social workers, and patient advocates, we’ve come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
“It pulled a curtain from over my eyes,” Bublé said of the life-changing “sledgehammer” that became his new “reality.”
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“When it actually happened, I was going through, I think, a crisis,” Bublé shared. “I don’t think I had my priorities straight.”
“My family was always a love,” he continued. “I don’t think I was a terrible guy but it was blinders — career, ambition, how do I become the baddest, biggest, best? More ego, more power, more money.”
Bublé, who also shares son Elias, 7, and daughters Vida, 5, and Cielo, 16 months, with his wife Luisana Lopilato, had to take a major step back and is accepting all the life lessons that comes with a child’s cancer diagnosis.
“It is a privilege for me to exist and that pain, fear and suffering that comes with those sorts of things,” he expressed, adding, “I guess it’s part of that beautiful — this life.”
Noah’s Liver Cancer Diagnosis
At age 3, Noah was diagnosed with a rare type of liver cancer called hepatoblastoma.
According to the National Cancer Institute, hepatoblastoma is a disease in which cancerous cells form in the tissues of the liver. Though liver cancer in general is very rare in children, the Children’s Hospital of Pittsburgh shares that hepatoblastoma is the most common liver cancer in early childhood when it does occur.
It is more common in boys over girls up to the age of 5, and if it spreads, it most commonly metastasizes to the lungs.
Blood tests, ultrasounds, CT scans (X-ray images), MRIs (medical imaging), and angiograms generally confirm a liver cancer diagnosis.
Risk Factors for Hepatoblastoma
Children with certain syndromes or conditions are at higher risk of developing hepatoblastoma, according to the National Cancer Institute. The risk factors include:
- Low birthweight
- Aicardi syndrome, a rare genetic disorder marked by a lack of tissue connecting the left and right halves of the brain, seizures, lesions on the back of the eye (retina), and other brain and eye abnormalities.
- Beckwith-Wiedemann syndrome, which is an overgrowth disorder where babies are large at birth and develop low blood sugar.
- Hemihyperplasia, where one side of the body or part of one side is larger than the other.
- Familial adenomatous polyposis, which is a disorder where many polyps form on the inner walls of the colon and rectum.
- Glycogen storage disease, in which a form of glucose has problems being stored inside the body.
Symptoms of Hepatoblastoma
Children suffering from hepatoblastoma may experience:
- A lump in the abdomen that may be painful
- Swelling in the abdomen
- Unexplained weight loss
- Loss of appetite
- Nausea and vomiting
- Because children may not be able to express symptoms they may be experience, it’s critical for parents to be vigilant of physical and behavior changes in their kids.
Liver Cancer Symptoms and Screening
Cancer Caregivers: The Basics
Assuming the role of a cancer caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer comes with a unique set of responsibilities. The first thing to understand is that there is no shame is asking for help. This can be an overwhelming time for both patients and their caregivers, too.
It is particularly hard for parents like Bublé to watch a young child in pain.
Through interviews with expert oncologists, social workers, patient advocates, and more, we’ve come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
Cancer caregivers may:
- Attend doctor visits with the patient
- Help the patient take notes/ask questions
- Provide transportation to and from treatment
- Accompany the patient during treatment
- Help keep track of side effects
- Link up with a social worker/patient navigator
- Help with day-to-day activities
- Provide emotional support
When you’re a caregiver, it’s important to ensure you’re taking care of yourself, too — so learning to manage your new responsibilities in a way that doesn’t feel overwhelming is key.
The cancer center where the patient is getting treatment may be able to link them up with a social worker or patient navigator. These workers can help with many aspects of the cancer journey — from arranging transportation to doctor appointments to assisting with insurance claims.
RELATED: The Value of Using a Social Worker During Treatment
“Patient navigators can function differently at different hospitals,” Dr. Kathie-Ann Joseph, a surgical oncologist at NYU Langone Health’s Perlmutter Cancer Center, told SurvivorNet.
“We have a really wonderful program at [NYU] where we use lay navigators, meaning they’re not nurses — although you can use nurses or social workers, that pretty much help newly diagnosed cancer patients through the continuum of care.”
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