Shoshana (16 years old) did incredibly well psychologically while being treated for osteosarcoma. She kept up with school (tutors at home and hospital for tenth and eleventh grade). She also took the SATs and went for a college interview (bald and on crutches). She wrote a research paper using a college library (she was the brains and I was her legs) that blew them over at the interview. She also helped to create a multimedia project for patient information at the hospital.

Shoshana was back in school for her senior year. It was a big adjustment socially. Some kids didn’t remember her; some thought she was a transfer student. She was still recovering from the side effects of chemo (lower counts, weight loss, low energy). Shosh was determined to put it all behind her and made college plans. She interned in a research lab and won an award from our community called Courage to Come Back. She won a full scholarship to our local university (Distinguished Honor Scholar).

Adam was not comfortable going back to school (kindergarten) when his hair fell out. His blood counts were down most of the time and he caught every cold that came around. When people asked what happened to his hair, he would simply reply, “Cancer,” but he wouldn’t go into detail. After 5 years, he still doesn’t go into details. I think that he tries to put it behind him and go on with life. He’s done a very good job with that.

My 16-year-old son was allowed to leave each textbook in his various classrooms. This prevented him from having to carry a heavy backpack all day. They also let him out of class a few minutes early because he was slower moving from room to room.

Elizabeth was in preschool at the time of her Wilms diagnosis. The manager did a wonderful job of integrating her back into the fold. All of the other children at the school were taught what was happening to Elizabeth and what would be happening (such as hair loss). They learned that they had to be gentle with her when playing. The manager was a former home health nurse, so I was very confident that she would be able to take care of my daughter in the event of an emergency. She was already familiar with central lines and side effects from chemotherapy. She was a gem!

Robby was diagnosed in January of his kindergarten year. He returned to kindergarten the same day he got out of the hospital. His teacher was wonderful. She moved the desks around in the classroom so that if Robby got tired, she would go get his cot and put it in the center of the classroom so he could lay down and still listen. If a child had a cold, she would move him/her to the other side of the classroom. The kids washed their hands at least four times a day. The teacher’s aide would sit in the rocking chair holding Robby if he was sad.

Because my son has had such a hard third-grade year, I have really researched the fourth-grade teachers. I sat in class and observed three teachers. I sent a letter to the principal, outlining the issues, and requested a specific teacher. The principal called me and said, “You can’t just request who you want. What would happen if all the parents did that? You’ll have to give me three choices just like everybody else.” I said, “My son has medical problems, behavior problems, and learning disabilities. Can you think of a child who has a greater need for special consideration?” My husband and I then requested a meeting with him, and at the meeting he finally agreed to honor our teacher request.

I asked for a spring conference with the teacher selected for the next fall and explained what my child was going through, what his learning style was, and what type of classroom situation seemed to work best. Then, I brought my son in to meet the teacher several times, and let him explore the classroom where he would be the next year. This helped my son and the future teacher get to know to one another.

My daughter went to a psychotherapist for the years of treatment. It provided a safe haven for frank discussions of what was happening, and also provided a place to practice social skills, which were a big problem for her at school.

It can be so helpful for the school staff to have periodic meetings to address concerns, fears, progress, or to learn about upcoming procedures. I don’t think enough parents know they can request meetings (for an Individualized Education Program [IEP] or otherwise) as they feel the need, and so can school staff. When Matt started school (elementary), I requested monthly inclusion meetings for the first semester and then every other month during the second semester with his IEP team. We wrote this in his IEP so it actually happened. I learned to do this from a parent much wiser than me!