Bone cancer is one of the most common types of childhood cancer, accounting for about 5% of all childhood cancers. Bone cancers can form in any bone in the body, though they are more common in some bones than others. They are part of the subtype of cancers called sarcomas. (Did you know? July is Sarcoma Awareness Month.)

There are two main types of bone cancer that affect children: osteosarcoma and Ewing’s sarcoma. Osteosarcoma is the most common bone cancer in children. It usually occurs in the long bones of the leg near the knee or in the upper arm. Ewing’s sarcoma is usually found in the thigh, pelvis, upper arm or rib. 

Both osteosarcoma and Ewing’s sarcoma are usually diagnosed in the second decade of life, around the time the child is going through their adolescent growth spurt. They are very rare in children under 5. Both are slightly more common in boys than girls.

Symptoms of Bone Cancer in Children

The most common symptom of bone cancer is bone pain. Other symptoms can include:

• A lump on the bone
• Stiffness, swelling, or tenderness around a bone or joint
• Limping (for tumors in the leg)
• Broken bones
• Fatigue, fevers, weight loss or anemia (low red blood cells)

Because many of the symptoms of bone cancer are common in healthy adolescents and young adults, they are often mistaken for sports injuries or growing pains, which occur far more often than cancer in this age group. As a result, the child may not receive a bone cancer diagnosis for weeks or months after their symptoms start.

Diagnosing Bone Cancer in Children

If a doctor suspects bone cancer, they will order imaging tests such as an X-ray or MRI to look at the bone and soft tissue surrounding it. If they see a tumor on the imaging tests, they will order a biopsy, where a surgeon will remove some cells from the tumor to be examined under a microscope. A pathologist can then determine the type of cancer or whether the tumor is benign (non-cancerous).

Once a diagnosis of bone cancer is made, the doctor will order more imaging tests, such as bone scans and CT scans, to see if the cancer has spread to the lungs or other parts of the body. This will help the doctor determine how advanced the cancer is and the best course of treatment. These scans will typically be repeated during treatment to track how well the treatment is working.

Treatment for Bone Cancer in Children

Treatment for bone cancer depends on the type of cancer, the child’s age, where the tumor is located and how advanced the cancer is.

Treatment usually involves surgery to remove as much of the tumor as possible. Chemotherapy and sometimes radiation can be used to shrink the tumor before surgery, and to kill any cancer cells left behind after surgery.

There are two main types of surgery for bone tumors: limb salvage surgery and amputation. In limb salvage surgery, a surgeon will cut out the bone and any muscle or surrounding tissue containing the tumor. They will then replace the bone with a bone graft (a piece of bone from another part of your body or from a donor) or a metal prosthesis.

Sometimes, when the bone cancer has invaded nerves, arteries, tendons or important muscles surrounding the bone, it’s not possible to remove all of the tumor and still have a working limb. In these cases, amputation is recommended. Amputation involves removing the tumor and some or all of the arm or leg.

Once the tumor is removed, the patient may have reconstructive surgery to rebuild the limb and help them retain function in their arm or leg. For example, when a bone tumor occurs near the knee, the surgeon may amputate the knee, the lower part of the thigh, and the upper part of the lower leg. They can then turn around the bottom of the leg and reattach it to the thigh bone, with the backward-facing ankle serving as a replacement knee joint. This reconstructive surgery is called a rotationplasty. The patient can then be fitted for a prosthesis to replace the lower part of their leg and foot, enabling them to eventually walk and even run again.

Rehabilitation After Bone Cancer Surgery

Bone cancer surgery can be life-altering, and for some patients, the recovery is a long and difficult process. It also may take the patient time to adjust to how they look and feel with the changes to their body.

Rehabilitation is key to helping the child get back to day-to-day living. After bone cancer surgery, the child will need physical therapy to help them rebuild their strength and flexibility in the affected area. If the cancer was in their leg, they may need to relearn how to walk. They may also need occupational therapy to help them learn how to do daily activities, like showering and getting in and out of bed, with their prosthesis or other devices such as braces, splints or walking aids.

Prognosis for Children with Bone Cancer

Overall, about 60% of children with bone cancer survive. The survival rate is higher if the tumor hasn’t spread beyond the original site at the time of diagnosis, and lower if it has. There are many other factors that affect an individual child’s prognosis, including:

• The child’s age at diagnosis
• The type of tumor
• The size and location of the tumor
• Whether the whole tumor can be removed surgically
• How well the tumor responds to radiation and chemotherapy
• Whether the cancer has spread to the lungs or other parts of the body

Sometimes the cancer will come back after treatment. When that happens, the chances of survival are usually poor. But it’s important to remember that every child is unique, and your child’s doctor will be able to give you the best understanding of his or her individual outlook.

July is Sarcoma Awareness Month, and at the American Childhood Cancer Organization, we know how devastating a pediatric sarcoma diagnosis is. That’s why we’re dedicated to shaping policy, funding research, and providing support to children with cancer, survivors and their families — all made possible by your donations. Please give today.

At the ACCO, we believe in the power of research, the importance of advocacy and the value of programs that help children and families affected by childhood cancer. When you give to the ACCO, you’re supporting all three. Please donate today.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

We hope everyone is staying safe and strong during these uncertain times. Above is a selection of gifts, sure to put a smile on Dad’s face. Father’s Day is June 20, 2021.

*Below you will find links to each product. Order soon to get in time for  Father’s Day!

1. “Cup of Hope” – Scotty P’s Big Mug Coffee – ACCO partnered with Scott Patterson, Gilmore Girl’s Luke Danes, to brew a special “Cup of Hope.” 
2. “Cup of Hope” – Coordinating Mug – If dad is a coffee lover, she will LOVE this coordinating mug. 
3. What About Kids Travel Mug – Help raise awareness with this “What About Kids” travel mug, Dad will love sipping her favorite drink from it while posing the question. 
4. “No One is Stronger” Tote Bag – Dads need to carry stuff too! Grab this bag in three colors. 
5. GO GOLD® Car Magnet – Dad can show support for ACCO and our nation’s littlest cancer warriors with this car magnet. 
6. ACCO Logo Ultra Soft Blanket – Wrap Dad up in this cozy navy blue blanket.  
7. ACCO Shirts– Our collection of shirts are sure to make Dad happy. Purchase a custom shirt through September 30 for the Childhood Cancer Awareness Shirt campaign, or right from our ACCO Bonfire store. *multiple styles and colors available.
8. “Every Child Leaves a Mark” Mug – This limited edition mug is perfect for Mom. 
9. ACCO Parent/Child Lapel Pin – Mom will love this ribbon pin featuring a parent embracing their child. 
10. ACCO Wings Ribbon Lapel Pin – We’ve created a Gold Ribbon Wing Lapel Pin in memory of the children who are gone too soon. 

Pediatric cancer treatment has come a long way in the last century. Back in the 1950s, a childhood cancer diagnosis was almost always fatal. But today, thanks to decades of childhood cancer research, 4 out of 5 of children diagnosed with cancer will survive. That’s great news, but as any childhood cancer survivor can tell you, that cure comes at a cost.

Today’s pediatric cancer treatments, although often effective at killing cancer, are very harsh on small, growing bodies, with side effects ranging from brain damage and hearing damage to extreme sickness or even death. Then there are the late effects — among them heart disease, infertility and even secondary cancers — that can surface years down the line. Two-thirds of survivors have a chronic health problem as a result of their treatment, and 1 in 4 will face a severe or life-threatening late effect. There’s still a long way to go until every child is cured — and until a cure doesn’t come at such a price.

So what’s the key to improving pediatric cancer treatment? More pediatric cancer research. Here’s why.

Cancer treatment isn’t “one size fits all.”

Pediatric cancer isn’t just one type of cancer. There are hundreds of types and subtypes of childhood cancer, and no two can be treated exactly the same. In fact, even the same type of cancer can behave differently in different children. There is no blanket approach to cancer treatment, and there probably won’t be a silver bullet that can cure every cancer. It’s not as simple as taking a drug that works for leukemia and giving it to children with brain tumors — each type of cancer needs its own specialized research.

There’s a lot we still don’t know about childhood cancer.

Childhood cancer is complicated, and childhood cancer research is complicated. For each of the many different types of childhood cancer, researchers need to understand what drives the cancers in order to figure out what therapies might target those drivers. Then they have to test those therapies first in the lab, and then in real children, whose bodies often behave quite differently than cells in a petri dish. This “bench to bedside” process, as it’s called, can take years — sometimes decades — of hard work, trial after trial, before researchers land on a new therapy that’s both safe and effective for children.

Children are not small adults.

The bulk of cancer research funding in the U.S. comes from the federal government, but the amount allotted for childhood cancers is paltry compared to the share for adult cancers. Talented would-be childhood cancer researchers turn away from the field in favor of more lucrative research prospects, and those who remain are left scrambling to find funding for their projects. But children’s developing bodies are different than adults’ bodies, and the cancers that affect them are different, too. It’s not enough to do more research for adult cancers — children need more research specifically for the cancers that affect them.

Not all children with cancer can be cured — yet.

Despite all the progress we’ve made, cancer kills more children in the U.S. than any other disease — in fact, more than many other top diseases combined. While some types of childhood cancer have cure rates above 90%, there are some, like DIPG, which no child has ever survived. And sometimes, even once the cancer goes away, it can come back — and it’s almost always harder to cure the second or third time around. Every child deserves to grow up and live a life of their own design, but we have a long way to go until that’s a reality for all children with cancer.

At the ACCO, we believe in the power of research, the importance of advocacy and the value of programs that help children and families affected by childhood cancer. When you give to the ACCO, you’re supporting all three. Please donate today.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Meet Declan, a 5 year old Ganglioglioma warrior.

When Declan was 3 years old, he was diagnosed with Ganglioglioma. Declan started having sudden onset seizures and was rushed to the emergency room by his mother, Stephanie. “As a nurse, I knew immediately that something neurological was going on.” 

“While in the recovery room three doctors approached us. We stood for the information and they asked if they could take us to a separate room. My heart dropped so far into my gut. As we walked out of the recovery room I looked at Jeremy [my husband] and said “This is not good.” I’ve never in my life wished I had been so wrong about being so right. The doctors shut the door and the first thing they said was “I’m sorry. We did see a large tumor on his MRI.” I looked at Jeremy and we made eye contact and then everything is a blur. I heard the word tumor multiple times, biopsy a few times, and I honestly can’t tell you much more that went on in that room. What I do know is that was the moment the universe strapped me into a rollercoaster of negative and optimistic, over and over again.” 

Declan has received 18 months of chemotherapy and several surgeries to help remove the section of his tumor that is causing the seizures. Epilepsy has been the biggest obstacle for Declan and his family. He “gets an aura and will call out “SEIZURE.” Teagan [his brother] comes running yelling ‘Declan is having a seizure!’ Declan thinks it’s funny at times to call out seizure when he knows he isn’t having a seizure.” 

“Declan’s diagnosis has changed my life, and in many ways it has helped me become a better mom, wife, and nurse. In the middle of caring for my son, and in the middle of a pandemic, as a nurse, I changed careers. I now work as an oncology RN at Brigham and Women’s Hospital on the DFCI inpatient unit. I absolutely love going to work each day, and take care of these patients who have the unfortunate burden of cancer. I can relate in ways that others can’t and I form bonds with my patients through sharing our stories of our own journey.” 

Declan continues to have daily seizures and just recently had a right temporal parietal craniotomy in hopes of removing the part of the tumor. “We have a long road ahead of us. It is with a heavy heart that we let people know that Declan’s surgery was not successful in eliminating his seizures. We are now faced with a new path of trying to get seizures under control.” Doctors have given the family three options in hopes of getting his seizures under control. Declan’s doctors say that unfortunately his seizures will never go away.

He “has a unique awareness of his medical status and is very open about his diagnosis. He tells people that he is special because he has a brain tumor and seizures. He tells his story with pride.” The family as a whole has decided to turn Declan’s diagnosis into a positive by helping to raise money for childhood cancer. Stephanie competed in the Pan Mass Challenge with Team Kermit and last year, the team raised more than $500,000 for pediatric brain and spinal cord tumors. 

Follow Declan’s story here: Deck’s Clan

Learn more about Brain Tumors here: https://www.acco.org/brain-tumor-awareness-month/

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.