Treatment for a brain or spinal cord tumor can span just a few weeks (for slow-growing tumors completely removed with surgery) to months or years. Regardless of the type of tumor, all children eventually reach a point in the treatment process when they move to an observation mode with no immediate plan for surgery, radiation, or chemotherapy. This period of observation may include treatments such as physical, occupational, or speech therapy, medical treatment of seizures or hormonal imbalances, and follow-up scans. It may last for months or go on indefinitely. It is during this inactive period that the family tries to return to normal life.
Parents should anticipate that, after many months or years spent watching their child go through the rigors of active treatment, they may have lost the feeling of a normal life. They may experience relapse scares and may frequently need to call the doctor to describe the symptoms and be reassured.
Sam received focal radiation to the tumor bed following surgery as a toddler for an ependymoma. When the radiation treatments were over, it was weird. Suddenly, Sam was no longer under treatment and we didn’t have any reason to go to the hospital. No reason to see any doctors or nurses. I had thought that I would be thrilled, and I mostly was, but I was also scared to be on our own. I was filled with thoughts of “what if.” What if he gets a fever? What if he has a headache? What if he vomits? I really missed the security of seeing a nurse every day.
Sam had his first follow-up MRI and lumbar puncture (LP) a week and a half after finishing radiation. They looked good—no signs of cancer! He was done with treatment and cancer-free! All we had to do now was go back to living normally, if that were ever possible, and come back in 2 months for his next MRI and spinal tap.
One of the ongoing issues that I still have as a parent is judging what to do in a medical situation. For a long time, I called our pediatrician for every fever or cough. Thankfully, Sam hasn’t had many stomach viruses with vomiting. It’s hard to go back to being normal about their health. On the one hand, I don’t want to panic and make too big a deal out of anything; but on the other hand, what if it’s a sign of something serious? I don’t want to under-react either.
Today Sam is cancer-free and a healthy, normal 5-year-old kindergarten student. Sam having cancer is the hardest thing our family has had to deal with. I think the best way to describe it is it’s like being on a roller coaster of good news/bad news. The highs and lows were more dramatic in the beginning. Even today, each MRI/LP follow-up puts us back on the ride.
With diagnosis came the awareness that life can be cruel and unpredictable. Many parents feel safe during treatment and feel that therapy is keeping the tumor from growing. The end of treatment leaves many parents and children feeling exposed and vulnerable. When treatment ends, parents must find a way to live with uncertainty—to find a balance between hope and reasonable worry.
I had a lot of anticipatory worry—it started about 6 months before ending treatment. By the last day of treatment I had been worrying for months, so it was just a relief to quit.
We were thrilled when treatment ended. I knew many people who felt that celebrating would jinx them; they just didn’t feel safe. Well, I felt that we had won a big battle—getting through treatment—and we were going to celebrate that. If, heaven forbid, in the future we had another battle to fight, we’d deal with it. But on the last day of treatment, we were delighted.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites