“Your child has cancer” – Dealing with Childhood Cancer, Types, Treatments, and Support

pediatric ALL

“When her daughter Tia was eight weeks old, Nithya noticed her stomach was bloated. Everyone told her not to worry, it was probably just a reaction to formula – but a couple of weeks later, Tia started vomiting. An ultrasound showed a 10 cm-long mass squashing Tia’s bowel and stomach – which is what had been causing the vomiting.

“I knew she was sick, but I never in my wildest nightmares ever thought it could be cancer. This couldn’t be happening to my beautiful baby girl.”

Tia’s first biopsy revealed she had stage4 neuroblastoma with secondary cancer in her bone marrow. Neuroblastoma is the most common ‘solid tumor’ of early childhood and is generally diagnosed when the disease is advanced. Tia began her chemotherapy treatment and responded well. But because the cancer she had was so aggressive, the journey would take years of hospital visits, scans and tests. After five months of starting treatment, Tia’s tumour had shrunk and her bone marrow was clear. After 14 months, Tia was declared in remission. She doesn’t remember the chemotherapy, but she remembers all the scans and ultrasounds that happened afterwards. Now seven, Tia loves swimming, dancing and Doraemon. She wants to be a doctor when she grows up.”

Even as you are reading this, a parent somewhere in the world hears the four words that turn their world topsy-turvy… ‘Your child has cancer’.

Worldwide, 300,000 children are diagnosed with cancer each year. Of course, every cancer diagnosis is difficult, but being told that your child has cancer can be particularly devastating. Parents are torn between hospital, home and work, not to mention the financial strain. Brothers and sisters feel left out and left behind. The child with cancer misses out on school, spending time with friends. Treatment takes over the life of the family.

But all is not as bleak as it appears, medical research has progressed a lot and pediatric cancers are treatable to a large extent. More than 80% of children with cancer now survive 5 years or more. Overall, this is a huge increase since the mid-1970s, when the 5-year survival rate was about 58%.

Common Childhood Cancers

Childhood cancer (also known as pediatric cancer) is defined as cancer in a child. An arbitrarily adopted standard of the ages used are 0–14 years. However, the definition of childhood cancer sometimes is extended to include young adults between 15–19 years old too.

The types of cancers that develop in children are often different from the types that develop in adults.

Childhood cancers are often the result of DNA changes in cells that take place very early in life, sometimes even before birth. Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors. The commonly occurring pediatric cancers are:

  1. ALL (Acute lymphoblastic leukemia) – The most common childhood cancer. Leukemia begins in bone marrow and spreads to the blood, and can then spread to the organs. Three out of four childhood leukemia cases are ALL. A new treatment for ALL has received FDA approval. This is the first treatment based on gene transfer and works by extracting a patient’s T cells, re-engineering it with some surface proteins, and then injecting the redesigned T-cells back into the body to allow them to proliferate, hunt and kill cancer cells. For now, this therapy, named Kymriah by Novartis, is approved to treat children and young adults up to age 25 with a recurrent form of the the blood cancer called acute lymphoblastic leukemia (ALL).
  2. Brain Tumours – There are many types of brain tumors and the treatment and outlook for each is different. Most brain tumors in children start in the lower parts of the brain, such as the cerebellum or brain stem.
  3. Neuroblastoma – Arises from immature nerve cells in infants and young children. Primarily found in children younger than 5, this disease often begins in the adrenal glands.
  4. Wilm’s Tumour – Starts in the kidneys and is the most common type of pediatric kidney cancer. Wilms’ tumour is now curable in more than 9 in 10 cases.
  5. Lymphoma – Starts in certain cells of the immune system called lymphocytes. These cancers affect lymph nodes and other lymph tissues, like the tonsils or thymus. They can also affect the bone marrow and other organs, and can cause different symptoms depending on where the cancer is growing.

Treating Pediatric Cancer

pediatric cancer CAR-T

As Aryan approached his first birthday, he was just like any other child, bubbly, increasingly mobile and seemingly healthy. But one night, after his bath, his mother Ruby, noticed his tummy felt firm. The previous day, she had been tickling another baby’s tummy and noted that hers’ was all squidgy. She didn’t think much of it at the time, but that night, alarm bells started to ring. Ruby took Aryan to the pediatrician the very next day. A series of ultrasounds, x-rays later, she was informed that Aryan had a large mass in his tummy. They were referred to the pediatric oncology department. “Walking onto the ward the following morning and seeing children undergoing treatment and fighting for their lives was a massive shock. We felt like complete frauds with our bouncing baby who had no signs of illness apart from a well fed tummy!”

X-rays and ultrasounds were repeated. Ruby and her husband this time got a confirmed diagnosis – 3rd stage Wilm’s tumour, the tumour was coming from Aryan’s kidney and was spreading into his abdomen, pushing all other organs aside. A port- a tube to give chemotherapy was inserted. The plan was to give him six weeks of chemotherapy to shrink the tumour before surgery that would remove both tumour and kidney. In two months Aryan’s tumour shrunk from the size of a football to that of an orange and was removed along with the kidney through a keyhole surgery. Aryan continued his chemotherapy for another seven months and is in remission.

Treatment for childhood cancer is based mainly on the type and stage (extent) of the cancer. The main types of treatment used for childhood cancer are chemotherapy, surgery, radiation therapy. Some types of childhood cancers might be treated with high-dose chemotherapy followed by a stem cell transplant. Newer types of treatment, such as targeted therapy drugs and immunotherapy, have also shown promise in treating some childhood cancers. Often more than one type of treatment is used.

With some exceptions, childhood cancers tend to respond better to certain treatments such as chemotherapy. Children’s bodies also tend to handle chemotherapy better than adults’ bodies do. On the other hand, children (especially very young children) are more likely to be affected by radiation therapy if it is needed as part of treatment.

Precision medicine is the new approach in cancer which is conquering new realms in pediatric cancer treatment. The goal of precision medicine is to treat patients with drugs that target specific genetic mutations in their tumours, regardless of where the tumours are found. This approach reduces side effects and improves success of treatments.

Dealing with Pediatric Cancer

It’s hard for parents to hear that their child has a tumor. It’s even harder for them to try to explain it to their child.

It’s a struggle Joby faced when his daughter Anna was diagnosed with a brain tumor when she was two-and-a-half and again when she was four-years-old.

“Having that conversation with your kid trying to tell your kid, ‘You’re going to have brain surgery’ is kind of your worst nightmare,” says Joby, “How do you comfort your child when your life is kind of turned upside-down?”

Most parents are at a loss when they have to explain to their child that they might have to go through a surgery / chemotherapy for treatment.

Joby with help from the nurses treating Anna, used a story book titled ‘Joey’s Wish’ that follows a little boy through his brain tumour, diagnosis and treatment to start a conversation with Anna about her diagnosis and treatment.

No matter what age a child is, a cancer diagnosis will have a big effect on them. However, most children will feel a mix of being anxious, afraid, angry, or upset at some stage during their illness. Children can show surprising natural resilience during a serious illness, however experts recognize that understanding a child’s specific needs, maintaining normal routines, and providing boundaries, comfort and love are all very important to help support this resilience.

Childhood cancers can occur suddenly, without early symptoms, BUT HAVE A HIGH RATE OF CURE.  It is important that the child be treated by a team of specialists who know the differences between adult and childhood cancers, as well as the unique needs of children and teens with cancer and their families. This team may include pediatric oncologists, surgeons, radiation oncologists, pediatric oncology nurses, physician assistants, and nurse practitioners.

This article was first published in The Week magazine dated March 26, 2017 under the title, Crab in the Crib. 

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