Treatment for children with brain and spinal cord tumors is evolving. The information gleaned from second opinions or your own research may reinforce what your doctor recommended, or it might provide you with additional treatment options. Either way, the information may increase your comfort level during the treatment planning process. You might want to ask your child’s treatment team the following questions about the suggested treatment plan:
- Why do you think this treatment is the best option? What are the other choices, and why are you recommending this one?
- Have you consulted with other doctors? If so, with whom? Did you all agree on this treatment or were several choices suggested?
- Is there a standard treatment for this type of recurrence or progression? If so, what is it?
- Are any clinical trials are available?
- What are the potential benefits and possible side effects of the suggested treatment?
- How long is the proposed treatment?
- If transplant is recommended, what is the timing strategy for the transplant?
- If radiation is to be included, what type and dose are you recommending?
- What are the known or potential risks of the treatment?
- Is any neurocognitive testing done prior to treatment/transplant and what kind of follow-up is there post-treatment/transplant?
- How often will my child need to be hospitalized?
- If the treatment is investigational, is there scientific evidence that it works for brain and spinal cord tumors?
- Does insurance cover this type of treatment?
- What supportive services are available? How do we contact the people responsible for these services? (Contacts might include a hospital school coordinator, social worker, psychologist, and physical therapist.)
- What is the goal of this treatment? Remission? Comfort?
When older children and parents disagree about how to proceed, you can ask the primary nurse practitioner, social worker, or psychologist to help your family talk about the options. These discussions will help clarify each family member’s thoughts and feelings and will allow the child’s emotional and physical well-being to be part of the equation.
After you have set goals, received answers to all of your questions, obtained a second opinion if desired, and decided on a treatment plan, it is time to proceed. Your knowledge and experience may prove to be a double-edged sword. You have no illusions about the difficulties ahead because you’ve done it before, but you also will be strengthened by your ties to the cancer community, your comfort with your doctors and hospital routines, and your ability to work with the system to get what your child needs. Many parents shared how their child took the lead with relapse treatment. While the parents agonized, their child simply said, “Let’s just do it.” And they did.
Evan, who had his first surgery shortly after his ninth birthday, wrote the following essay about his journey. In addition to having a brain tumor, Evan has a diagnosis of high-functioning autism.
I was 9 when I found out I needed brain surgery. I was nervous then, but I would be scared out of my mind if I was put in that situation now. When I came out of surgery, I couldn’t walk, I couldn’t even swallow very well or talk much. My first memory after surgery, I was in intensive care. It was bright. I was sound-sensitive, and my head was throbbing. I found out the type of tumor I had, a pilocytic astrocytoma, is the least malignant, but it was in the brainstem. That meant it was still very serious.
After that surgery, I lost weight. I looked like a Holocaust survivor. I couldn’t even stand on the scale, so someone had to hold me. They did a test that I had to swallow food with some chemical thing in it, and then they found out that I had cranial nerve damage so it was hard for me to swallow.
I went to rehab to learn to walk and for physical and occupational therapy. In rehab I could wear regular clothes, and they had a school, too. They had something like periods. At certain times, I’d go to therapy, and then I’d be in school, and so on. Some things were fun, and some things were not.
Some things I enjoyed were seeing movies and playing Uno®. Things I did not enjoy were blood tests and the physical therapy, or PT. Finally after 6 weeks, I got to go home. When they sent me home, I could walk and talk, but I had to wear a helmet. That’s it for the first time around.
A year later, I started to get worse again. I had an MRI, and the tumor had grown, so it was time for another surgery. I was afraid, but I had more of an idea what to expect. After surgery, I didn’t lose as much weight, but I had crossed eyes and high blood pressure. It felt like a ’57 Chevy on my head, as I described the pain then. It was around Halloween, so I didn’t go trick-or-treating. I was also eager to get to rehab, because it made me feel so much better the last time.
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