In Oncology

Oncologist

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.

In Neurosurgery

Neurosurgeon

A neurosurgeon is a doctor who specializes in the diagnosis and surgical treatment of disorders of the central and peripheral nervous system including congenital anomalies, trauma, tumors, vascular disorders, infections of the brain or spine, stroke, or degenerative diseases of the spine. Less technically speaking, they’re the ones that “go inside” and scoop out what’s not supposed to be there.

They also have nurse practitioners that do many tasks pre-op and post-op. In Kiara’s case, all of the nurse practitioners are brilliant and beautiful women (seriously, could they be more perfect?). Kiara’s neurosurgeons themselves are unbelievably smart and capable.

Neurosurgeon vs. Neurologist
When a patient has neurological symptoms, often their initial evaluation is with a neurologist, who might obtain imaging to get to the source of the problem. If they discover a structural problem, such as a tumor, they’ll refer the patient to a neurosurgeon. Both doctors treat the same organ, but neurosurgeons operate and neurologists don’t.

Neurologists treat disorders, such as stroke, Alzheimer’s disease, headache, epilepsy, Parkinson’s disease, sleep disorders, multiple sclerosis, pain, tremors, brain, and spinal cord injuries, brain tumors, peripheral nervous disorders and amyotrophic lateral sclerosis. Neurosurgeons treat head and spine trauma and injuries, brain or neck aneurysms or clogged arteries, brain and spinal tumors, and anatomical and structural defects.

Pro Tip: Try to see a neurosurgeon. If you have a clean MRI, then they will refer you to a neurologist or other specialist that can manage your treatment. If their first available appointment isn’t for months, go to the ER and see the neurosurgery nurse practitioner on call. It’s worth it.

In Symptoms , Visual Impairment

Difficulty Seeing

Many of the other parents of cancer kids that I’ve met described one of the primary symptoms of their brain tumor as visual impairment. Kiara often said that she saw “flashing” or was “seeing stars.” We thought it was just from standing up too quickly, but it was actually her optic nerves dying.

If your young child says, “I can’t see,” and you’ve already seen an ophthalmologist to know his or her eyes are healthy, make an appointment with a neurosurgeon and get an MRI.

In Symptoms

Nausea

When Kiara started pre-K, she started throwing up more and more. It was a white, foamy vomit — not food or bile — and usually happened in the morning. We went to the pediatrician several times, and tried eliminating gluten and dairy from her diet. We spoke to teachers about lowering anxiety. This went on for 5 months before we knew something was dangerously wrong. Pro Tip: Get an MRI! We didn’t know that this was being caused by hydrocephalus. If you can’t get in with a specialist, go to the ER. Maybe Kiara wouldn’t be blind today if we went to the ER in December instead of waiting for the first-available neurologist appointment months later. I used to worry about going to the ER — that it would be too expensive or I’d be overreacting, but if I could go back in time I’d go the day she started throwing up the white, foamy vomit.

In Neurosurgery

MRI

Magnetic resonance imaging (MRI) is a noninvasive medical test that physicians use to diagnose medical conditions. MRI uses a powerful magnetic field, radio frequency pulses and a computer to produce detailed pictures of organs, soft tissues, bone and virtually all other internal body structures. Basically, it’s a big machine that sounds like an automatic Nerf gun and takes pictures of the brain.

Kiara’s scans are done every 3 months or as needed. They take two sets of scans: once without contrast and once with contrast. Neurosurgeons and oncologists use the different types of scans to look for different problems. Tumors show up with contrast. Flair shows up in the scans without contrast. The radiologist is the doctor that first looks over the scans and writes up a report. If there are any questions about the radiology report, the tumor board (consisting of neurosurgeons, oncologist, and others) will review it.

In some operating rooms they will also have an interoperable MRI (IMRI) machine that allows the neurosurgeon to scan the brain during surgery to locate and address any unresolved issues. Unfortunately the IMRI was broken on the day of Kiara’s first major resection, although the neurosurgeons say that it would not have affected the outcome.

In Oncology

Flair (on MRI)

In Visual Impairment

White Cane

The white cane is a useful tool to millions of blind people in navigating their environments with confidence and safety. It allows blind or visually impaired people to feel surfaces and obstacles in front of them, helping them safely travel where and when they want, and be self-sufficient. White canes (not called “walking sticks”) are often made from aluminum, graphite-reinforced plastic, or other fibre-reinforced plastic, and can come with a wide variety of tips depending upon user preference.  White canes can be either collapsible or straight, with both versions having pros and cons.

Kiara’s white cane is collapsible, which makes it convenient to stow when we’re at a restaurant or ball game. She has a ball tip on the end so that she can sweep it on the ground without it catching on sidewalk cracks or other obstacles.

To learn more about walking with a white cane, check out this video. (Her entire YouTube channel is great!):

Every year on October 15, the President of the United States recognizes White Cane Day by the Blind Americans Equality Day Proclamation to acknowledge the abilities of people who are blind and to promote equal opportunities as any other American. The mission of White Cane Day is to educate the world about blindness and how the blind and visually impaired can live and work independently while giving back to their communities, to celebrate the abilities and successes achieved by blind people in a sighted world, and to honor the many contributions being made by the blind and visually impaired. There are usually community celebrations around this date, although it varies by city.

In Special Education

ARD

An Admission, Review, and Dismissal (ARD) is a meeting at school, where the child’s team and parents review goals and develop an IEP for the student. The ARD is run according to a formal outline by a designated ARD facilitator (it is all dictated by law), but during each discussion there can be informal times to share and collaborate, too. Kiara’s ARD meetings include her ARD Facilitator, principal, assistant principal, classroom teacher, TVI, Special Education teacher, O&M teacher, occupational therapist, physical therapist, school counselor, and possibly others. It is wonderful to have an opportunity to see everyone at once to discuss my child’s progress, needs, and abilities. (I’ve often wondered why the school nurse doesn’t join us and if there is a policy keeping her from attending, but she’s never been very interested in Kiara’s medical journey so I haven’t reached out with an invitation.) We’ve been very lucky that all of Kiara’s team members are genuinely interested in her success, so we’ve never had to “fight” in an ARD; however, there are several professionals that will accompany you to an ARD meeting to make sure your child’s needs are being met. If you need this kind of assistance, contact your HHS case worker or an advocacy group.

In Special Education

IEP

An Individualized Education Program (IEP) is a document that lists a child’s educational goals. It is developed for each public school child who needs special education; in private school it is called an Individual Services Plan (ISP) and it is far less comprehensive than an IEP (in Kiara’s case it was insulting and pointless). The IEP is created through a group effort whereby each team member fills out forms for their particular specialty and then they are combined into one document that is reviewed at the ARD. It is reviewed periodically (there are legal requirements), and can be adjusted if the child’s needs change. For example, as Kiara’s vision atrophied her plan changed from some print/some Braille to exclusively Braille. The IEP is basically a contract or SOP between the school and your child.

In Visual Impairment

Braille

Braille is a tactile writing system (raised dots that can be read with the fingers) used by people who are blind or visually impaired. The history of braille goes all the way back to the early 1800s, when Charles Barbier developed a system known as “night writing” so Napoleon’s army soldiers could communicate safely at night without lamps revealing their locations. Barbier’s letters had raised 12-dot cells, but the human fingertip could not feel all the dots with one touch. Louis Braille, who was blinded by a childhood accident, was only 11 years old when he modified Barbier’s “night writing” code to a 6-dot cell so that blind people could read faster and more efficiently. He spent the next decades refining the system that was named after him and gradually accepted throughout the world.

By using the braille alphabet, people who are blind can review and study the written word. They can also become aware of different written conventions such as spelling, punctuation, paragraphing, and footnotes, as well as math calculations and formulas. Most of all, braille gives blind individuals access to a wide range of reading materials including recreational and educational reading, financial statements, and restaurant menus. Equally important are contracts, regulations, insurance policies, directories, and cookbooks that are all part of daily life. Through braille, people who are blind can also pursue hobbies and cultural enrichment with materials such as music scores, hymnals, playing cards, and board games. Kiara has braille UNO cards so the whole family can play together.

Why is there braille on drive-up ATMs and random signs? I used to laugh, too, until I recognized Kiara’s vulnerability as a blind female. Not only do I worry about her physical safety, but emotional, too. How would you feel if you weren’t sure if you were walking into the men’s room or the women’s room? Wouldn’t you appreciate a sign to confirm you were in the right place and save yourself from humiliation (or touching too many nasty surfaces)? Imagine having an Uber driver take you to an ATM machine – would you give him your PIN number and ask him to get cash for you? Heck no! With braille Kiara has financial security by having the independence to use an ATM on her own.