September is Childhood Cancer Awareness Month!
September is Childhood Cancer Awareness Month!
I have a few different goals when writing this blog post: to teach you about childhood cancers and symptoms, help you understand cancer treatments and side effects, introduce you to a sweet friend here at Sidekick, and inspire you to take action.
Every 3 minutes, a parent is told their child has cancer.
15,780 children aged 0-19 are diagnosed with cancer each year.
20% of children diagnosed with cancer don't survive.
4% of cancer research funding goes specifically to childhood cancer.
1 in 20 children die because of the treatment, rather than the cancer itself.
There are 12 main types of childhood cancers, each with their own set of signs and symptoms.
- Brain Cancer
- Signs and Symptoms: seizures, vomiting, repeated movements, vision changes, personality changes, walking and balance issues, weakness, headaches, and back pain
- DIPG (brain stem cancer)
- Signs and Symptoms: difficulty with balance, difficulty walking, difficulty moving eyes, swallowing issues, morning headaches, one sided facial weakness, and double vision or blurred vision
- Rhabdoid Tumors (cerebellum tumor)
- Signs and Symptoms: morning headaches, nausea and vomiting, changes in activity levels, feeling sleepy, loss of balance and coordination, and increased head size
- Spinal Cord Tumors
- Signs and Symptoms: back pain, arm and leg pain, trouble urinating, change in bowel habits, difficulty walking, and delays in reaching developmental milestones
- Leukemia (blood cancer)
- Signs and Symptoms: pain in back, legs and joints, sleepiness, headaches, trouble walking, easy bruising, frequent nosebleeds, bleeding gums, loss of appetite, and fever
- Osteosarcoma (bone cancer)
- Signs and Symptoms: bone pain, pain or swelling around joints, bone fractures, anemia, fatigue, weight loss, and difficulty with moving
- Hepatoblastoma (liver cancer)
- Signs and Symptoms: fever, abdominal pain, diarrhea, appetite loss, itchiness, irritability, and mass or lump in the upper abdominal region
- Lymphoma (lymph node cancer)
- Signs and Symptoms: swollen lymph nodes, swelling of the face and abdomen, night sweats, fever, weight loss, and difficulty breathing and swallowing
- Neuroblastoma (nerve cancer)
- Signs and Symptoms: enlarged belly, swelling of the legs, chest, face, and neck, bluish bumps on the skin, issues with urination or bowel movements, and drooping eyelids
- Retinoblastoma (eye cancer)
- Signs and Symptoms: whitish color behind the pupil, difficulty moving eyes, staying cross eyed, and persistent irritation of the eyes
- Rhabdomyosarcomas (soft tissue cancer)
- Signs and Symptoms: painless lump on the arm, leg, or groin, drooping eyelids, protruding eyeballs, vision changes, hoarseness, and abdominal pain
- Wilms Tumor (kidney cancer)
- Signs and Symptoms: abnormal urine color or blood in urine, constipation, nausea and vomiting, high blood pressure, night sweats, fevers, and loss of appetite
Treatments for cancer can include a mixture of surgery, chemotherapy, radiation therapy, immunotherapy, and stem cell transplant.
- Most cancer treatment regimens were made for adults with cancer. These regimens are then modified to use with children. This is part of what makes treating cancer more dangerous with children.
- Possible short term side effects of treatment: low blood cell counts, nausea, diarrhea, hair loss, surgical scars, and limb loss from surgical removal
- Possible lifetime side effects of treatment: delayed growth, learning disabilities, problems with memory and attention, poor hand eye coordination, behavior issues, loss of sensation to the hands and feet, poor balance, vision loss, hearing loss, dizziness, weakened bones and muscles, changes in walking, heart damage, constant cough, shortness of breath, small or missing teeth, hormone disruptions for growth and sexual developmental, and fertility issues.
Therapies can be instrumental in regaining independence, improving quality of life, and fostering hope during and after treatment. Specifically:
- Physical Therapy:
- Can target coordination, balance, walking with assistive devices and leg prosthetics, improving pain, cardiovascular training, muscle strengthening, achieving gross motor milestones, improving range of motion of feet and assessing need for foot orthotics, scar and wound management
- Occupational Therapy:
- Can target sensory play with hands and feet, memory games, attention to task, regulating behavioral issues, hand eye coordination, use of an arm prosthetic, hand strength, and completing daily activities independently
- Speech Therapy:
- Can target attention to tasks, word pronunciation after oral surgeries, coping with hearing loss, vocal imitation, gross motor imitation for signing, and gesturing toward preferred items
- Feeding Therapy:
- Can target reintroducing textures and tastes that may have changed due to chemo and nausea, self-feeding skills with solids and purees, and improving chewing and swallowing patterns
Josie was born with a genetic condition called Li-Fraumeni Syndrome (LFS). This means that she has a 90% risk of developing cancer, and that she likely will have multiple cancer diagnoses in her lifetime. Then, at 5 months old, her parents were told that their sweet baby girl had cancer: specifically, adrenocortical carcinoma. This is an extremely rare and aggressive cancer. The tumor had grown to the size of a softball and needed to be surgically removed. Shortly after surgery, Josie had a port placed in her chest to begin her chemotherapy treatments. A port is an easier way to access the blood vessel to give chemotherapy, fluids, and medication, as well as take blood needed for labs. Josie's chemo regimen started in March of 2021; treatment included 6 rounds of chemo lasting 18 weeks. After each treatment, Josie's neutrophil count would hit zero: this means that she had absolutely no way to fight off an infection. She would get very sick, vomiting and screaming, and wouldn't want to move. When she would feel better between rounds of chemo, Josie started physical and occupational therapy. On June 22nd, Josie was done with chemotherapy, and on August 3rd, Josie's end of treatment scans showed no evidence of disease!
Josie was cleared from her cancer diagnosis, and the therapies she received doubled. We added feeding and speech therapy on top of getting physical and occupational therapy. Since Josie is better able to fight off potential infection, she gets to venture to the clinic once a week to have therapy. While each child has different side effects of their cancer diagnoses and cancer treatment, we want to highlight what Josie has been working so hard on!
- Physical therapy: We have targeted scar management to decrease pain and encourage healing, trunk rotation to assist with rolling, tolerating time spend on her tummy, sitting unassisted, moving from sitting to playing on the floor and vice versa, crawling on hands and knees, pulling up to stand, and overall muscle strengthening for improved stability and mobility. Soon, we start work on cruising and walking!
- Occupational therapy: We have targetedfine and gross motor coordination, playing and engaging with her environment, using hands symmetrically, placing toys into containers, touching various textures, tolerating a therapressure brushing technique to improve body awareness and sensory processing, clapping hands, and reaching to various items in sitting without falling over.
- Feeding therapy: We have targeted reintroducing textures and tastes that may have changed due to chemo and nausea, self-feeding skills with solids and purees (as Josie was primarily breast feeding throughout treatment), lateralization of her tongue to help manage solid food items and move tongue throughout treatment, and increasing how much solid food she will eat.
- Speech therapy: Josie has hearing loss from treatment and will be getting hearing aids soon; however, she currently can't hear certain speech sounds. Therefore, we are targeting imitating sounds, using hands to sign and gesture toward something she wants, and helping turn her babbling into real words.
Josie works hard during therapy, and she has incredible parents who help her work on skills at home too. We are so grateful to have been trusted with Josie's care, and we love watching her reach milestone after milestone!
Like Josie, many kids have cancer related side effects and could benefit from therapy services. If you have any questions about therapy treatment after cancer diagnosis or would like to have your child evaluated, please call our office for an appointment.
To learn more about Josie, visit Josie's Butterflies on Facebook.
To learn more or make a donation for childhood cancer research, visit
- St. Jude's: https://www.stjude.org/
- American Childhood Cancer Organization: https://www.acco.org/
-Cheyenne Allen, PT, DPT
Childhood cancer Awareness Month. ACCO. (2020, May 22). Retrieved September 22, 2021, from https://www.acco.org/childhood-cancer-awareness-month/.
Childhood cancers. National Cancer Institute. (n.d.). Retrieved September 22, 2021, from https://www.cancer.gov/types/childhood-cancers.
Late effects of childhood cancer treatment. American Cancer Society. (n.d.). Retrieved September 22, 2021, from https://www.cancer.org/treatment/children-and-cancer/when-your-child-has-cancer/late-effects-of-cancer-treatment.html#:~:text=Chemotherapy%20damage%20to%20quickly%20dividing,may%20happen%20many%20years%20later.
Josie's Butterflies,Facebook. (n.d.). Retrieved September 22, 2021, from https://www.facebook.com/josiesbutterflies/?ref=page_internal.
A special note from Josie's family:
On Sidekick: Our weekly visits to Sidekick Therapy Partners is the highlight of our week. Josie gets excited when she sees Cheyenne, Kelli, and Laura because she knows how much fun they will have playing together. She doesn't realize that they are actually working hard and teaching her new skills! After nearly 6 months of undergoing surgeries and chemotherapy treatment, Josie was struggling with gross and fine motor skills and feeding. The therapies Josie has received at Sidekick have helped her to overcome many of the challenges and delays that cancer treatment imposed and she is now making incredible progress and having fun while she does it! We are thankful to have the therapists from Sidekick on our team.
On Research Funding: Josie's cancer was so rare that there is no proven treatment. We had to rely on experimental treatments that were designed for adults, and they were extremely hard on Josie's not even one-year-old body. She will have lifelong side effects from the treatment including permanent hearing loss and possible organ damage. Better treatments will come from more pediatric cancer research. More research will come with more funding. Our hope is that one day, children diagnosed with adrenocortical carcinoma will have a safe and effective treatment option that was not available to Josie.