What do you know about Childhood Cancer?
What do you know about what the kids diagnosed go through just to survive?
Are you aware of the various types of childhood cancers and which ones are the most common?
If you are anything like I was two years ago, you likely never thought about childhood cancer other than when you would see a bald child at the shopping centre or on the TV at an event of some kind. Unless childhood cancer affects someone in your family or in your close circle of friends, we tend to not focus on it at all.
Paige; Childhood Brain Cancer Survivor
My life changed in 2016 when I was introduced to the Childhood Cancer Awareness campaign primed by the Teen Ontario East Pageant. My eyes and heart were opened to an incredible group of young cancer champions that I met throughout my reign as Miss Teen Ontario East 2016 and now as Miss Teenage Eastern Ontario 2017. The impact that their stories and their struggles made on me has been life-changing. I remember sitting as a delegate in the 2016 Miss Teen Ontario East Pageant and listening to Paige’s story, an extraordinary young woman who battled brain cancer at the age of 8 and getting completely overwhelmed with her Courage Bead Necklace; a special representation of her cancer journey visualized in specific coloured beads that represented all of the facets of her cancer journey.
1/2 of Paige’s Courage Bead necklace
It was something I will never forget. It is an impacting visual presentation of what Paige went through over her long journey battling through her cancer diagnosis. Paige’s final message that day was “Cherish your yesterdays, Dream your tomorrows, but ALWAYS LIVE your TODAYS!” I will never forget that message.
I mentioned in my initial Charity Platform post that I want to focus on introducing my readers to some different childhood cancer diagnosis and how that specific cancer and treatment affected the life of the child.
The first childhood cancer that I would like to highlight is BRAIN CANCER.
Some brief statistics provided by The Canadian Cancer Society:
Childhood cancer accounts for less than 1% of all new cancer cases in Canada.
The 3 types of cancer that account for the majority of new cancer cases in children 0–14 years of age in Canada are:
- leukemia – 32%
- brain and central nervous system – 19%
- lymphomas – 11%
The 3 types of cancer that account for the majority of cancer death in children 0–14 years of age in Canada are:
- brain and central nervous system – 34%
- leukemia – 26%
- neuroblastoma and other peripheral nervous cell tumors – 11%
“A brain tumor is a collection, or mass, of abnormal cells in the brain. Brain tumors can be cancerous or benign (noncancerous); however, any growth inside the skull, a restricted space, can cause problems.”
“Pediatric brain tumors are the most common form of solid tumors among children under the age of 15, and represent about 20% of all childhood cancers. Childhood tumors frequently appear in different locations and behave differently than brain tumors in adults. Treatment options vary and can be strongly influenced by the age of the child. Children with tumors may also have a much better prognosis than adults with a similar condition.”
- A childhood brain or spinal cord tumor is a disease in which abnormal cells form in the tissues of the brain or spinal cord.
- The brain controls many important body functions.
- The spinal cord connects the brain with nerves in most parts of the body.
- Brain and spinal cord tumors are a common type of childhood cancer.
- The cause of most childhood brain and spinal cord tumors is unknown.
- The signs and symptoms of childhood brain and spinal cord tumors are not the same in every child.
- Tests that examine the brain and spinal cord are used to detect (find) childhood brain and spinal cord tumors.
- Most childhood brain tumors are diagnosed and removed in surgery.
- Some childhood brain and spinal cord tumors are diagnosed by imaging tests.
- Certain factors affect prognosis (chance of recovery).
Together, the brain and spinal cord make up the central nervous system (CNS).
The brain controls many important body functions.
The brain has three major parts:
- The cerebrum is the largest part of the brain. It is at the top of the head. The cerebrum controls thinking, learning, problem solving, emotions, speech, reading, writing, and voluntary movement.
- The cerebellum is in the lower back of the brain (near the middle of the back of the head). It controls movement, balance, and posture.
- The brain stem connects the brain to the spinal cord. It is in the lowest part of the brain (just above the back of the neck). The brain stem controls breathing, heart rate and the nerves and muscles used in seeing, hearing, walking, talking, and eating.
Brain and spinal cord tumors are a common type of childhood cancer.
The cause of most childhood brain and spinal cord tumors is unknown.
The signs and symptoms of childhood brain and spinal cord tumors are not the same in every child.
Signs and symptoms may be caused by childhood brain and spinal cord tumors or by other conditions, including cancer that has spread to the brain. Brain Tumor Signs and Symptoms:
- Morning headache or headache that goes away after vomiting
- Frequent nausea and vomiting.
- Vision, hearing, and speech problems.
- Loss of balance and trouble walking.
- Unusual sleepiness or change in activity level.
- Unusual changes in personality or behavior.
In Paige’s case, she experienced severe headaches, a pounding in her left ear (which she later found out was from a build-up of fluid on the brain), frequent vomiting, and loss of balance, no energy, and confusion. She would do and say things that wouldn’t make any sense and would just sit down in the middle of a store when shopping to rest. Not normal behavior for an 8 year old.
Paige on her chemotheraphy protocol
Paige’s parents took her to the family doctor who sent her to a neurologist. The neurologist saw Paige, did some testing and then sent her immediately to the Children’s Hospital of Eastern Ontario to have a CT scan to confirm his diagnosis. Immediately after the CT scan, Paige was admitted into the Intensive Care Unit at CHEO and that day began what would be a very long journey through the world of a childhood cancer patient. The very next day Paige had a 6 hour MRI to mark her head in preparation for a 14 hour brain surgery the following day. Immediately following the surgery, the Neurosurgeon indicated to Paige’s family that the tumor was in fact malignant and they were then appointed to an oncology team to determine treatment options for Paige.
Like the tumors, the treatment options vary based on the type of tumor, the age of the patient and the grade of the tumor. In Paige’s case, she was stage 4 with a highly aggressive tumor called MEDULLABLASTOMA.
Post 2nd surgery to insert a VP shunt to relieve fluid build up
Most CNS embryonal tumors are medullablastomas. Medulloblastomas are fast-growing tumors that form in brain cells in the cerebellum. The cerebellum is at the lower back part of the brain between the cerebrum and the brain stem. The cerebellum controls movement, balance, and posture.
Children diagnosed with medullablastomas may have certain problems after surgery or radiation therapy such as changes in the ability to think, learn, and pay attention. Also, cerebellar mutism syndrome may occur after surgery. Signs of this syndrome include the following:
- Delayed ability to speak.
- Trouble swallowing and eating.
- Loss of balance, trouble walking, and worsening handwriting.
- Loss of muscle tone.
- Mood swings and changes in personality.
Post-surgery, Paige was affected with cerebellar mutism syndrome and was unable to speak, swallow, walk or move her arms. In addition to dealing with a cancer diagnosis, Paige also had to go through extensive physiotherapy, occupational therapy and speech therapy sessions to teach her brain how to do everything all over again. It was a long, slow, painful and tiring process in addition to the sickness and fatigue that comes with high grade radiation and chemotherapy treatments.
Paige undergoing extensive therapy sessions to teach her brain to do everything over again.
Treatment Option Overview
- There are different types of treatment for children with brain and spinal cord tumors.
- Children with brain or spinal cord tumors should have their treatment planned by a team of health care providers who are experts in treating childhood brain and spinal cord tumors.
- Childhood brain and spinal cord tumors may cause signs or symptoms that begin before the cancer is diagnosed and continue for months or years.
- Some cancer treatments cause side effects months or years after treatment has ended.
- Three types of standard treatment are used:
- Radiation therapy
- New types of treatment are being tested in clinical trials.
- High-dose chemotherapy with stem cell transplant
Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy:
- External radiation therapy uses a machine outside the body to send radiation toward the cancer.
- Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer.
Paige having chemotheraphy port-a-cath flushed
- Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly in the cerebrospinal fluid, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). The way the chemotherapy is given depends on the type and stage of the cancer being treated.
- Anticancer drugs given by mouth or vein to treat brain and spinal cord tumors cannot cross the blood-brain barrier and enter the fluid that surrounds the brain and spinal cord. Instead, an anticancer drug is injected into the fluid-filled space to kill cancer cells there. This is called intrathecal chemotherapy.
Paige’s cancer treatment plan (called a protocol) consisted of 30 doses of high grade EXTERNAL radiation to the brain and the spine and a 56 week aggressive chemotherapy plan with 3 different types of chemotherapy drugs. Paige had a port-a-cath ( a small device surgically implanted under the skin to feed the chemotherapy drugs through) inserted into her chest so she could get her chemotherapy drugs injected directly to the vein. The chemotherapy drugs that Paige received caused significant side effects but were required in order to kill the cancer cells. Bone pain, dry mouth, excessive nausea, hair loss and hearing loss were just a few of the side effects that plagued Paige during and after treatment.
“The radiation freaked me out because I couldn’t talk when I started so I didn’t know what was happening to me and I was put in a plastic mold that went from my head to my butt and I couldn’t move. The only thing that got me through them was when my Mom would read Junie B Jones books to me over the intercom while I had the treatment. It was funny because it actually got to be that the technicians were waiting for the end of the story every day when I would go. I think they enjoyed the stories too!” Paige said.
“The chemotherapy made me very sick and I lost all my hair right after I started treatment. It gave a whole new meaning to “BAD HAIR DAY!” I also had to be kept away from friends because the chemotherapy affected my immune system so I couldn’t go to school but I was lucky to have a great home school teacher.”
Always masked to go in public
Children with brain tumors should have their treatment planned by a team of health care providers who are experts in treating childhood brain tumors.
Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with cancer. The pediatric oncologist works with other health care providers who are experts in treating children with brain tumors and who specialize in certain areas of medicine. These may include the following specialists:
- Radiation oncologist.
- Rehabilitation Specialist.
- Social worker.
- Nurse specialist.
- Fertility specialist
In Paige’s case she had all of the above including speech, physio and occupational therapists who worked under the direction of the Rehabilitation specialist. She told me it was her list of “ologists.”
I love her sense of humour!
Paige conquered her treatments with the same spirit and determination that she portrays in her life after cancer. Paige is now 12 years post treatment and is now dealing with late side effects of the tumor and subsequent treatments that she endured.
Some cancer treatments cause side effects months or years after treatment has ended.
These are called late effects. Late effects of cancer treatment may include the following:
- Physical problems.
- Changes in mood, feelings, thinking, learning, or memory.
- Fertility challenges
- Secondary cancers (new types of cancer).
Paige having her testing for Central Apnea
Paige still has issues with her motor skills (she uses a walker or wheelchair), she still has some learning challenges, has paralysis in her left diaphragm, hearing loss in one ear, is quite short in height due to radiation to her growth gland and suffers from severe central apnea which has compromised her breathing significantly, but none of these challenges SLOW HER DOWN!
As soon as Paige could speak her first words, just 8 weeks after her original brain surgery, she was lobbying friends and family to start what would be an incredible fund raising charge for childhood cancer that she still champions today. Paige is a strong advocate and motivational speaker for Childhood Cancer Awareness and has received various awards of recognition for her efforts including: National Youth Philanthropy Award, the Governor General Award for Youth Volunteering, United Way Community Builders Award, CAYFO Courage Award and was recognized as one of four Canadian Heroes of Hope by the Cancer Society in 2011. Paige is truly an inspiration to everyone she meets and her sense of humor despite all she has gone through in her life is infectious.
Paige receiving the Ontario Medal of Honour for YOUTH VOLUNTEERS
I am very proud to call this remarkable BRAIN TUMOR survivor my friend!
“Cherish your Yesterdays, Dream your Tomorrows but LIVE your TODAYS!”
Miss Teenage Eastern Ontario 2017