Behind the curtain’s mystic fold, The glowing future lies unrolled.
— Bret Harte
IT’S HARD TO BELIEVE that when the first astronaut walked on the moon, the technology available to diagnose and treat children with brain and spinal cord tumors was primitive, at best. Many children were placed on medication for seizure disorders without ever knowing that the cause of the seizures was a tumor. When diagnosed, most children died from their tumor.
Treatments have come a long way in the past 4 decades. New techniques and technologies are now available to successfully diagnose, treat, and cure many children with brain and spinal cord tumors. Diagnostic tools, especially the MRI, allow for earlier diagnosis and treatment. The MRI helps neurosurgeons plan delicate surgeries and is also used to give them a three-dimensional picture of the tumor during surgery. MRI is also used to plan radiation treatments and allows the newer radiation therapy machines to deliver more focused doses of radiation, thus sparing nearby healthy brain cells. Chemotherapy has been shown to penetrate the blood/brain barrier, and many drugs have been found to be effective in destroying brain and spinal cord tumor cells.
The enrollment and participation in national clinical trials has fueled great success in understanding and treating these tumors. Many children with fast-growing tumors have enrolled in clinical trials over the last few decades, which has enabled researchers to learn about the many different subgroups of tumors and how each should be treated. Research has also shown that:
- Children diagnosed with the same type of tumor have incredibly variable responses to treatment. Therefore, some children with grim prognoses are cured, while others with a tumor considered to be very treatable are not.
- Children with tumors that are totally removed with surgery have a much better prognosis than those whose tumors cannot be totally removed.
- Slow-growing tumors may be observed and remain dormant for months or years without any treatment.
- Some slow-growing tumors shrink over time.
- New surgical instruments and improved intraoperative monitoring provide valuable information to pediatric neurosurgeons during operations.
- Chemotherapy, whether used alone or in conjunction with radiation therapy, is effective in treating some brain and spinal cord tumors.
- Radiation therapy, which used to be the gold standard, is now not used for some tumors until other treatment methods have been tried.
When you have an aggressive malignant tumor growing in your child’s brain, the choice to wait for newer, superior treatments to come along may not be an option. In the case of our daughter Morgan, who was first diagnosed with a malignant medulloblastoma a few days before her second birthday, the decision to wait on having her undergo radiation therapy was a hard and complicated one. After a successful resection of her tumor, Morgan went on to receive six rounds of intense chemotherapy followed by a stem cell transplant. Afterward, her doctors requested that we follow her therapy with radiation treatments. Because of her age, not yet 3, we opted to not expose her to the powerful tool of radiation, which may have increased her chance of long-term survival but at the same time may have left her cognitive abilities severely handicapped. Our decision was not a hasty one. We also had well-respected doctors telling us not to do any other therapy, including radiation, because Morgan’s chemo treatment was the most powerful of its day and some kids were actually achieving long-term survival without radiation.
Morgan stayed cancer free for 2 years. It was at Morgan’s 2-year MRI scan that a small tumor was found—she had relapsed at the original tumor site. Now we had no choice but to treat Morgan with radiation therapy. What we immediately realized was that by waiting, we bought Morgan some time. Now almost 5, Morgan’s cognitive development would fare better after radiation than if she were 3. What we didn’t know was that technology in radiotherapy had improved greatly with the introduction of a sophisticated treatment called proton beam radiation. Different from the traditional method, proton beam causes less damage to the good brain cells and delivers a more direct hit to the tumor bed. The result, many doctors believe, is less damage to the good brain tissue (sparing cognitive impairment) and similar results for long-term survival as traditional radiation treatments.
Morgan received proton beam radiation for 6 weeks to her head and spine. Today she is 18 years old, a senior in high school, and is currently looking at colleges. Does she have learning disabilities? Yes. Are they stopping her from pursuing her dreams? No. She has continued to stay mainstream throughout her high school academic career with some support. She has been able to join the cross country team and run all 4 years of high school. She has a fun group of friends who she goes to movies with and hangs out with. She drives, has a job, and stresses about the clothes she is going to wear. She is a typical teenager who just happens to have had a brain tumor.
There is good reason to believe that the technological advances on the horizon will result in a more positive outlook for children and teens diagnosed in the future. These advances, combined with continued enrollment of children with brain and spinal cord tumors in national clinical trials, will expedite the identification of effective treatments.
The increased number of long-term survivors has raised awareness of late effects of the disease and treatments. The expansion of rehabilitative medicine has allowed for physical, occupational, and speech therapy to be available at home, at school, and in the community. Special education and the mandate for individualized educational programs provide appropriate education for children who have cognitive problems from the tumor or its treatment. Such programs have expanded to include career and college counseling.
As researchers, doctors, and nurses forge ahead in the fight to improve diagnosing and treating children with brain and spinal cord tumors, they share the same dreams of the patients and their families.
During the 30 years that I have spent as a nurse and a nurse practitioner, I have worked only with children with cancer. Twenty five of those years were spent working with children who have brain and spinal cord tumors. I have witnessed countless families coping with the diagnosis and treatment of their children. In the early days, there were no MRI scans, no venous catheters, and most children who had brain tumors died. As clinicians, we would sigh to ourselves with each new diagnosis thinking in the back of our minds, “How many months or years will this child live?”
Technological advances and laboratory research have completely changed the pessimism associated with brain and spinal cord tumors. We now know that many tumors can be cured or controlled with surgery. Chemotherapy and radiation can cure or control those that grow back or can’t be removed with surgery. We have learned that to do nothing but watching often buys us time for a newer treatment that may come along. Aggressive research continues with the support of many groups organized by families of children with brain and spinal cord tumors to find a cure for each and every type of tumor.
In the bigger picture, it isn’t the diseases or the treatments that I remember, it is the children:
- Kristen who had four surgeries and 2 years of chemotherapy for her medulloblastoma, which was diagnosed when she was 9 months of age. She is now 25, a college graduate.
Ryan had a brainstem and spinal cord tumor diagnosed at age 2 and underwent several surgeries and radiation. He couldn’t move a muscle, was dependent on a respirator, and had a feeding tube because he could not swallow. I cried 4 years later when I got a holiday card with a picture of Ryan riding a bicycle. He is now 26.
- Brian, diagnosed at 15, underwent surgery, chemotherapy, and radiation. Ten years later, I went to his wedding. Three years ago, I got a birth announcement. He is the proud father of a daughter.
- Charlie was operated on at ages 4 and 8 for a brain stem tumor. He invited me to his bar mitzvah at 13, graduated from college, and emailed me recently that he is working in finance and applying to law school.
- Colette was diagnosed with a frontal lobe, low-grade astrocytoma after a seizure in 8th grade. It was surgically removed, and eventually she was taken off seizure medications and the seizures did not return. She wrote an excellent college essay based on her story and she is now a junior in college.
There is reason to hope.
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