Camps for Children with Cancer and Blood Disorders

• Hole in the Wall Gang Camp – founded by Paul Newman, and located in Ashford, CT, the year-round free camp is open to children with cancer or blood disorders between the ages of 7 and 15 and their siblings.
• Camp Sunshine – Located in South Casco, ME, this free camp for families is designed to provide respite, professional counseling, and recreational opportunities to families facing the physical, emotional, and financial strain of a child with a critical illness.

Cancer Information for Families

• CareTalk: Blog for Cancer & Blood Disorders – Get insights and inspiration from Nemours’ experts in Hematology/Oncology

Our family-centered approach focuses on your whole child, not just the disease. Helping to guide you throughout your child’s diagnosis and treatment, our highly trained team includes an entire collection of Nemours health care providers and support service members:

• board-certified pediatric hematology doctors
• specially trained pediatric hematology nurses
• nurse practitioners
• physician assistants
• experts in pain and symptom management
• licensed clinical social workers
  
• Child Life specialists
  
• physical therapists
  
• occupational therapists
  
• speech therapists
  
• nutritionists
  
• pastoral care
  
• teachers

Other Nemours specialists and subspecialists who may be on your child’s care team include: 

• radiologists
  
• psychiatrists and psychologists
  
• endocrinologists, who help treat problems relating to the endocrine system or glands
• nephrologists, who treat problems with the kidneys
• neurologists and neurosurgeons, who treat problems with the brain and nervous system
• pulmonologists, who treat problems with the lungs
• gastroenterologists, who treat problems with the stomach
• ophthalmologists, who treat problems with the eyes
• infectious disease specialists
  
• orthopedic surgeons
  
• pediatric surgeons
  
• ENT specialists
  
• genetic specialists
  
• urologists
  

And, to make sure every child benefits from our multidisciplinary care, we frequently round as a team.

Blood disorders are diseases of the blood including:

• red blood cells, which carry oxygen to the body’s tissues
• white blood cells, which help your child’s body fight infections
• platelets, which work to help your child’s blood clot properly
• clotting factors, proteins found in blood that help stop bleeding after a cut or surgery

Types of Red Blood Diseases We Treat

• Iron-deficiency anemia: low iron levels that lead to decreased hemoglobin, which helps carry oxygen through the blood to all parts of the body 
• G6PD deficiency (also called RBC enzyme abnormalities): an inherited condition in which a child lacks an enzyme that protects red blood cells
• Hemolytic anemias: the abnormal breakdown of red blood cells
• Sickle cell disease: a common inherited disorder caused when the red blood cells become sticky and oddly shaped
• Thalassemia (Cooley’s anemia): a genetic condition in which one of the two proteins that help make up hemoglobin in red blood cells is lacking
• Neutropenia: caused by a decreased amount of white blood cells that may be caused by disease or chemotherapy treatment
• Anemia: due to a chronic condition such as kidney disease, cancer, or lead poisoning    

Types of White Blood Cell Diseases We Treat

• Neutropenia: a condition caused by a decrease of white blood cells, as a result of disease or chemotherapy treatment
• Leukemia: a cancer of the blood that develops in the spongy center of some bones (called the bone marrow)
• Lymphoma: a blood cancer that develops in your child’s lymph system and includes two types: Hodgkin and non-Hodgkin lymphoma
• Myelodysplastic syndrome: blood cancer affecting the bone marrow

Types of Platelets Diseases We Treat

• Thrombocytopenia: a condition caused by too few platelets and results in abnormal bleeding
• Thrombocytosis: a condition caused by too many platelets, which can lead to clots in the blood vessels
• Idiopathic thrombocytopenic purpura: caused by a low number of platelets that results in abnormal bruising and bleeding

We’re also knowledgeable about treating children with hemophilia, an inherited, uncontrolled bleeding disorder. Children diagnosed with hemophilia either lack or have a low supply of proteins in their blood called “factors;” factor VIII or factor IX. These factors help your child’s blood to clot after an injury, preventing excessive bleeding.

There are three main types of hemophilia:

• hemophilia A: the most common form, caused by a lack of blood clotting factor VIII
• hemophilia B: caused by a low supply of factor IX
• von Willebrand disease (vWF): this type of hemophilia causes prolonged bleeding  

Symptoms of hemophilia include:

• excessive bleeding
• bruising easily
• joint bleeds (causing chronic pain and immobility)
• bleeding into the muscles (causing swelling, pain, and redness)
• bleeding from injury or in the brain (brain hemorrhage)

Treatment for hemophilia depends on your child’s severity and may include:

• factor concentrates
• blood transfusions
• surgery
• limiting contact sports
• immunizations administered under the skin rather than in the muscle

• specialized blood testing in our state-of-the-art lab
• blood banking, a process in which donated blood for transfusions is stored in our lab
• transfusions, a procedure in which blood is given to your child through an intravenous line (IV)
• bone marrow transplant, a procedure that destroys unhealthy cells using chemotherapy and radiation, before new, healthy donor cells are given through a transfusion

At the duPont Hospital for Children, we want to make your experience as stress-free as possible for you and your child. That’s why part of our top-rate care includes amenities and conveniences right here at the hospital such as:

• free valet parking
• on-site pharmacy
• playground
• cafeteria and café
• gift shop
• kid-friendly play areas
• non-denominational chapel
• Child Life Activity Center (in addition to bedside activities provided by our Child Life specialists)
• Family Resource Center: Created with the help of our friends at the Ronald McDonald House to provide you with some of the comforts of home such as:
  • laundry facilities
  • showers
  • kitchenettes
  • library for reading materials and DVDs
  • business center including a copier, fax machine, computers, and printers
  • three sleep rooms, each containing a full-sized bed

We also offer the following family-centered services:

Pediatric Oncology Day Therapy: Children with blood disorders and cancer who don’t need to be admitted to the hospital can receive, on an outpatient basis (when they can come in and go back home the same day):  

• assessment
• chemotherapy administration
• pheresis (a special type of blood donation)
• blood transfusions
• minor procedures
• patient and caregiver education 
• nursing care

Loaner laptops and Internet access for kids: An organization called KINfolk helps children (both inpatients and outpatients) fight boredom, isolation, and depression associated with hospital admissions and visits – with the use of laptops, iPads, and other technology – to help chronically ill children (both inpatients and outpatients) stay mentally stimulated and in-touch with their support network.

GetWellNetwork Educational Programs: While your child is staying in the hospital, you can watch informative videos about conditions like sickle cell disease and common tests and procedures – right at your child’s bedside. Produced by Nemours’ own KidsHealth.org (the #1 most-visited website in the world for children’s health) and the GetWellNetwork Inc., these videos help you, your child, and your whole family understand what to expect from your child’s condition, tests, treatment – and beyond.

Weekly Town-hall-style Meetings: In order to improve our care, we invite parents of children receiving inpatient treatment to weekly meetings – designed to address concerns and answer questions that may come up from living in a communal or hospital-based environment. To make sure all family members are heard and supported, parents can also participate in support groups.

Family Advisory Council: Based on their own experiences, parents of children receiving treatment for a blood disorder or cancer serve on this advisory council. These parents help us make your child’s entire hospital experience less stressful – from child-friendly décor, to functionality such as mini-refrigerators in your child’s hospital room, to better access to social workers, prayer groups, and more.

Integrative Medicine: In addition to specialized treatments, we offer complementary therapies to help minimize your child’s fears about what’s to come next. We treat not just your child’s condition, but your child’s – and your family’s – feelings and spirit, too. That’s why our Integrative Medicine services work in conjunction with your child’s medical care – blending traditional and alternative (also called complimentary or holistic) medical therapies to help reduce pain and anxiety, and help kids feel better physically and emotionally.

Some of our offerings include:  

• Healing Touch (a therapeutic service offered to all children and their families that uses both touch and non-touch methods to promote relaxation and relief from clinical services and procedures)
• massage therapy
• pet therapy
• art therapy
• aromatherapy
• music therapy
• mind-body meditation
• yoga

We may know how to treat your child’s condition, but no one knows your child better than you. That’s why we want you to be an active participant in the decision-making process for your child’s treatment. We’ll explain every step in easily understandable terms, present all options (including alternative methods), and invite your input.

Whatever you’re facing, know that at Nemours we do whatever it takes to give your child the very best, most compassionate treatment possible. We treat every child as we would our own — your child, our promise.