About Jordan’s illnesses
HLH and Ewing sarcoma
Jordan was diagnosed with HLH, a rare blood disease, at 11, and with Ewing sarcoma, a bone cancer, at 17.
Hemophagocytic lymphohistiocytosis
What is HLH?
A rare disorder in which histiocytes and lymphocytes (types of white blood cell) build up in organs including the skin, spleen and liver, and destroy other blood cells. HLH may be inherited, or caused by certain conditions or diseases, including infections, immunodeficiency (when the body cannot fight infections) and cancer.
HLH can be hard to diagnose because its first symptoms can look like other problems, such as common infections. Signs and symptoms may include:
- Persistent fevers
- Rash
- Enlarged liver, spleen or lymph nodes
- Anaemia, low platelets and low white blood cells
- Jaundice and hepatitis
- Liver failure
- Breathing problems, such as coughing or respiratory distress
- Seizures
- Changes in mental function
How is HLH treated?
Treatment is very important because HLH is life-threatening. The treatments suppress the immune system: usually steroids, chemotherapy (etoposide) and antibody therapies that target T cells (anti-thymocyte globulin, ATG, and alemtuzumab). Patients may also have other medicines that suppress the immune system, and medicines to prevent or treat infections.
Many patients also need their immune system replaced with a blood or bone marrow stem cell transplant to be cured of HLH, as Jordan did with his sister Bethany’s bone marrow. Your doctor can tell you if this applies to you or your child.
A rare cancer of the bone and soft tissue
What is Ewing sarcoma?
Ewing sarcoma is a rare cancer that can form in bone and soft tissue. It belongs to a group of tumours known as the Ewing sarcoma family of tumours, which includes:
- Ewing sarcoma, a form of primary bone cancer
- Extraosseous Ewing sarcoma, a tumour that starts in soft tissue rather than bone
- Askin tumour, Ewing sarcoma that starts in the chest wall
- Primitive neuroectodermal tumour, Ewing sarcoma whose cells look like nerve cells under the microscope
Around 85% of Ewing sarcomas start in the bones, but they can also start in soft tissue. It is the second most common primary bone cancer in young people, after osteosarcoma. It can start anywhere in the body, but is most often found in the pelvis, the chest or the bones of the legs.
How Ewing sarcoma spreads, and how it is treated
Ewing sarcoma can spread quickly to other parts of the body, and can sometimes come back after treatment, so patients need treatment to the whole body as well as the original tumour. Tumour cells can break away and travel in the blood or lymphatic system to form new, secondary tumours, and can also spread through the bone as the tumour grows.
The most common places for secondary tumours are:
- the lungs
- other bones
- the bone marrow
Very rarely it spreads to the lymph nodes, liver or brain.
Treatment is usually a combination of chemotherapy, surgery and radiotherapy, and it is the same wherever in the body the Ewing sarcoma starts.
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