Blood tests are done at every chemo appointment to monitor a patient’s response to treatment. White blood cells fight infection and can be compromised when a patient is receiving chemo. The most important infection-fighting white blood cell is the neutrophil, so doctors look at the absolute neutrophil count (ANC). The ANC is found by multiplying the white blood cell count by the percent of neutrophils in the blood. For instance, if the WBC count is 8,000 and 50% of the WBCs are neutrophils, the ANC is 4,000 (8,000 × 0.50 = 4,000). A healthy person has an ANC between 2,500 and 6,000. When the ANC drops below 1,000 it is called neutropenia. The oncologist will watch the ANC closely because the risk of infection is much higher when the ANC is below 500. Monitoring blood counts allows the medical team to make changes before problems get serious. Keeping track of results lets the oncologist take action early to help prevent many cancer-related problems and cancer treatment side effects. I also keep a log in Kiara’s binder.
The world of pediatric neuro-oncology is very small and most doctors know each other from conferences. Do not be afraid to ask for a second opinion — you’re not betraying anyone and they appreciate the professional collaboration. There is also close work between neurosurgeons and oncologists, so it’s ok to loop in other doctors from other hospitals. Find your oncology nurse navigator. This is a nurse in your clinic with oncology-specific clinical knowledge that can offer individualized assistance to patients, families, and caregivers to help overcome healthcare system barriers. He or she will gather your child’s records and scans, send them to the other doctor/hospital for you.
Some hospitals submit tumor samples and thereby participate in clinical research; however, some hospitals have sophisticated labs and research grants to conduct research studies on site. Most doctors prefer to go with standard peer-reviewed, traditional treatments. The Dana–Farber Cancer Institute at Boston Children’s has research studies for ground-breaking discoveries. St Jude’s Children’s Research Hospital also offers clinical trials, if your child qualifies for the study.
When I first met Kiara’s oncologist, I was panicked and confused. Kiara was being rushed into emergency surgery to place an EVD to keep her brain from further herniating. We had just learned there was a tumor, but nurses, assistants, and practitioners didn’t want us to be “alarmed” or “worried” about the tumor — wait to worry, they said, until after the resection when the pathology report comes back. Yeah, right. Fortunately those days seem to race and crawl all at the same time, and Kiara’s oncologist was patient, reassuring, and informative.
An oncologist is a doctor who treats cancer. Usually, an oncologist manages a person’s care and treatment once he or she is diagnosed with cancer. The field of oncology has three major areas: medical (chemo), surgical, and radiation. Pediatric neuro-oncology is a very small and specialized field, so most of these oncologists know each other and are happy to collaborate for the best treatment possible.
If you start seeing an oncologist, you’re probably at the point where you’ll be going to a cancer center. With the oncologist comes a Nurse Practitioner, Nurses, Social Worker, Child Life Specialists, Nurse Navigator, and others that you’ll work with going forward.
Grading helps us understand how aggressive a tumor is and if the tumor has spread, and if so, how far. There are four grades of brain tumors, and the higher the grade the more malignant the tumor. Generally speaking, the lower the tumor grade, the better the chance of recovery. Tumor grading helps the doctor, patient, and caregivers/family members to better understand the patient’s condition. It also helps the doctor plan treatment and predict outcome.
Below are description of the various tumor grades, based on the World Health Organization (WHO) grading system:
- Grade I: These are the least malignant tumors and are usually associated with long-term survival. They grow slowly and have an almost normal appearance when viewed through a microscope. Surgery alone may be an effective treatment for this grade tumor.
- Grade II: These tumors are slow-growing and look slightly abnormal under a microscope. Some can spread into nearby normal tissue and recur, sometimes as a higher grade tumor.
- Grade III: These tumors are, by definition, malignant although there is not always a big difference between grade II and grade III tumors. The cells of a grade III tumor are actively reproducing abnormal cells, which grow into nearby normal brain tissue. These tumors tend to recur, often as a grade IV.
- Grade IV: These are the most malignant tumors. They reproduce rapidly, can have a bizarre appearance when viewed under the microscope, and easily grow into nearby normal brain tissue. These tumors form new blood vessels so they can maintain their rapid growth. They also have areas of dead cells in their centers. The glioblastoma multiforme is the most common example of a grade IV tumor.
Ok, I’m just going to say it: The WHO’s description is misleading and has created a ho-hum attitude about Grade I brain tumors that is frustrating and offensive. Kiara’s tumor is a Grade I pilocytic astrocytoma and it is not a friendly little tumor that you scoop out and it goes away. It has wreaked havoc on her body — permanently compromised her balance and taken her vision. Plus, it is against (grabbing into) her brain stem, so this is inoperable and life-threatening. She has endured 68 weeks of chemotherapy treatments and will have to face the consequences of what that may have done to her body. The paradigm about Grade I battles needs to be changed.
Pathology is a branch of medical science primarily concerning the cause, origin, and nature of disease. It involves the examination of tissues, organs, bodily fluids, and autopsies in order to study and diagnose disease. In Kiara’s case, they sent her brain tumor to the pathology lab, where they run tests to determine the type of tumor and the grade. Biochemists or chemical pathologists examine different substances found in the tumor that can help understand its origin and behavior, so that doctors know how to treat it. Pathologists may also study the molecular and genetic profiles of a tumor to determine different tumor subtypes. Neuro-oncologists may use the genetic studies to inhibit the growth or recurrence of a tumor. In Kiara’s case, I’m interested in learning more about BRAF status in pilocytic astrocytomas, which understanding is way above my pay grade right now, but keeping it in my back pocket for future discussions with her oncologist.
A surgeon implants a port in the chest just under the skin. It is a small disc (kind of like a little pin cushion) made of plastic or metal about the size of a quarter that has a soft thin tube called a catheter connecting the port to a large vein near the heart. Chemotherapy and other IV medications are given through a special needle that fits into the port. Blood can also be drawn through the port to test ANCs and other panels. Kiara’s port is accessed every Thursday during her oncology appointment. After her chemo roadmap is finished, she will go to the clinic 1-2x per month to have her port flushed. After a couple MRIs over the course of 3 or so months and if her scans are stable then her port can be surgically removed.