You should notify the principal as soon as possible about your child’s diagnosis. It is a good idea to do this in writing (either by email or letter), in part because it is a less emotional way to convey the news, but also because it helps ensure you pass along all the relevant information, including:
• The diagnosis and a brief description in non-technical language of what it means.
• A very brief outline of what is expected to happen next and the impact it will have on your child’s ability to attend school.
• A brief description of the educational resources available at the hospital or any other educational information you received from the hospital social worker or school liaison.
• How your child’s teacher or classmates can reach your child in the hospital.
You can also express your hope that you, the school, and the hospital will work together to ensure that your child’s education sustains as few interruptions as possible. You can ask the principal to share your letter with the teacher (or teachers) or you can send them separate emails or notes.
When notifying students at the school, the wishes of your child (especially if a teenager) about contacting the school and friends should be respected. If you and your child want to ask the teachers and students to stay in touch, inform them that he may sometimes feel too tired to answer right away. Personal visits may not be feasible or welcome, at least at first, but cards, letters, pictures, classroom videos, or other updates will make your child feel less isolated and will remind her that there are people who care for her outside of her family and the hospital staff. In some schools it may be possible to attend school virtually—when it is feasible and the technology is available. More information is available in Chapter 22, School.
As Joseph was getting cleaned up after biopsy surgery, we met the oncologist who had explained that our sweet, green-eyed 4-year-old had orbital rhabdomyosarcoma, and he gave us information about the tests that would need to be done in the days ahead. The next morning, Joseph and I woke up in the hospital room together for the very first time. We had been up a lot in the night getting him comfortable. With the early morning sun up, Joseph and I had some quiet time. I sat down on his bed next to him and told him in fairly simple words that the doctors had found out he had a sickness called cancer behind his eye. We would have to stay at the hospital for a few more days because cancer can travel around in your body and make you sick in other places, and we had to do different kinds of tests to make sure it hadn’t gone anywhere else inside him. I promised that I would be right with him for everything—we would do it all together. I meant it fiercely, with every bone in my body. I would do everything I could to make sure he wasn’t hurt or afraid and that he would get better. At that moment, my husband was home with our 7-year-old, telling him his little brother had cancer. Later I found out that Nate went to school that morning and cried with his teacher. I wish we had all been together to talk about it, but we did the best we could at the time.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups