At diagnosis, if your family is not initially referred to a specific children’s hospital, or if there is more than one excellent children’s hospital in your area, you may be able to choose where you would like your child to be treated. Parents can obtain a free referral to an accredited center from the National Cancer Institute (800) 422-6237 or from the:

Children’s Oncology Group (COG)

(626) 447-0064

https://childrensoncologygroup.org/index.php/locations

We decided to have treatment at our local children’s hospital (member of COG) instead of going far away to a big city hospital. My daughter was 4 when she was diagnosed with AML, her sister was 2 ½, and her brother was 9 months. I was nursing my son, so we moved the whole family into the hospital. The nurses were great—they moved a second bed into the room for us to use in addition to the pull-out couch. It was a mixed pediatrics floor, not just oncology, so we were put in a laminar air flow room to reduce the risk of infection. We had special hallway slippers to use when we left the room, and we washed our hands every time we had been out of the room. I stayed in the room with all three kids, and my husband came after work and slept with us there at night. I wanted to make it as normal as possible, so I brought in wheeled shelves with books and toys and a little wood table and chairs. The child life specialists brought in a play mat, and we covered the walls with the girls’ drawings and pictures. We were in the hospital almost continuously from November to June, and we celebrated a third birthday and a first birthday there.

In recent years, the way health care has been planned and delivered to children has changed. It is now based on the concept of family-centered care. The core concepts of family-centered care are respect, dignity, information sharing, participation, and collaboration, which foster healthy relationships among healthcare providers, parents, and children. At most children’s hospitals, a family-centered team is assigned to each family with a newly diagnosed child. This team—composed of physicians, physician assistants, nurses, child life specialists, psychologists, social workers, physical and occupational therapists, and others—strives to ensure that the emotional, social, and developmental needs of every family member are addressed, in addition to the medical care of the child. Members of your child’s team will be there to answer questions and provide emotional support while recognizing that you are the expert about your child.

The day my 3-month-old daughter was diagnosed, we met the team—oncologist, nurse, nurse practitioner, child life specialist, and social worker. They are the ones who take care of us during our frequent hospitalizations; they provide consistency and much, much more. The nurses just get it. They understand why sometimes I burst into tears when they say, “How are you doing?” They have been our family in the darkest of hours. They are the only thing I am going to miss when this is all over.