In Special Education

School for the Blind

Most blind students attend their local public schools, and their educational needs are met by itinerant specialists who travel to them. This approach allows them to learn alongside sighted peers, while still receiving individualized instruction in the skills and tools of blindness.

State-Run Schools

There are 34 state-run schools for the blind, which includes institutions in many states such as Alabama, California, Florida, Illinois, Texas, Maryland, and others.  State schools remain critical hubs for:

    • Students with multiple disabilities, deafblindness, or complex needs.

    • Specialized training (Braille literacy, mobility, technology).

    • Professional development for educators in vision education.

State-run schools for the blind are historic, publicly funded residential institutions that not only educate students on campus but also serve as statewide resource centers. While far fewer children attend them today compared to the past, they remain essential centers of expertise in blindness education.

In addition to the academic advantages, state schools for the blind (through leagues like SCASB) ensure that blind students can compete in sports just like sighted students do in regular interscholastic leagues. For students in public schools, inclusion depends more on individualized accommodations — though national organizations and adaptive sports programs are expanding opportunities.

Private Non-Profit Schools

According to the American Printing House for the Blind (APH), in 2022 about 4,539 students (8% of legally blind students in K–12 or similar education settings) were enrolled in residential schools for the blind. While this confirms the presence of additional schools, it doesn’t specify how many exist, but reinforces their ongoing use.

While the state-run residential schools form the backbone of blind education in the U.S., there’s also a strong network of private nonprofit institutions (like Perkins, Overbrook, St. Joseph’s) and religious/charitable schools. Most of the non-state-run schools fall into two categories: private non-profits and religious/mission-based institutions. A few examples:

Perkins School for the Blind (Massachusetts)
– Founded in 1829, the first school for the blind in the U.S.
– Still operates as a private, nonprofit, international leader in blindness education.

Overbrook School for the Blind (Philadelphia, PA)
– Established in 1832; serves students from birth to age 21.

St. Joseph’s School for the Blind (Jersey City, NJ)
– Catholic-affiliated, nonprofit; offers specialized education and adult services.

Washington State’s Foundation for the Blind runs some programs outside the state system.

Some Catholic and Protestant organizations historically founded blind schools that still exist in some form (like St. Joseph’s above).

These are generally supported by charitable donations, tuition, or contracts with local education agencies.

How They Differ From State Schools

Funding: State schools are publicly funded; private ones rely on tuition, donations, grants, or contracts.

Admissions: Private schools often accept out-of-state or international students more easily.

Programs: Many private/nonprofit schools offer transition to adulthood programs, assistive tech training, or international outreach (e.g., Perkins has programs in ~100 countries).

In

Targeted Therapies

Here’s how the last 70 years of FDA approvals for pediatric brain cancers compare to just the past 16 months (2024–2025):

Historical Context: 1950s–Early 2020s

  • For decades, there were no FDA-approved drugs specifically targeting pediatric brain cancers.

  • Standard care consisted almost entirely of:

    • Surgery (when possible)

    • Radiation therapy

    • Chemotherapy (often with agents originally developed for adult cancers—temozolomide, carboplatin, vincristine, etc.).

  • These were “borrowed” treatments rather than drugs designed for children or for their specific tumor biology.

 Until recently, pediatric brain cancer drug development was extremely limited, partly because:

  • Brain tumors are rare (pediatric cancers make up only ~1% of all cancers).

  • Ethical and practical challenges in running pediatric clinical trials.

  • Historically, pediatric cancers did not attract the same R&D funding as adult cancers.

Turning Point: Mid-2010s–2020s

A few approvals touched on pediatric central nervous system tumors, but not directly on pediatric brain cancers:

  • 2010s–2020s: Drugs like selumetinib (2020) and mirdametinib (2025) were approved for NF1-related plexiform neurofibromas, which are tumors of the nervous system but not brain cancers per se.

Still—no systemic therapy for pediatric gliomas or diffuse midline glioma (DMG) until very recently.

The Breakthrough Era: 2024–2025

In just over a year, three new targeted therapies received FDA approval specifically for pediatric brain tumors:

  1. Tovorafenib (Ojemda, 2024) – relapsed/refractory low-grade glioma with BRAF alterations.

  2. Vorasidenib (Voranigo, 2024) – grade 2 IDH-mutant gliomas (adults and ≥12 pediatric).

  3. Modeyso (2025) – diffuse midline glioma (DMG), the first ever systemic therapy for this devastating childhood tumor.

Comparison in Simple Terms

  • 1950s–2023 (≈70 years):
    → 0 FDA-approved drugs specifically for pediatric brain cancers.
    → Children were treated with adult chemotherapy, surgery, and radiation.

  • 2024–2025 (≈16 months):
    → 3 FDA approvals (tovorafenib, vorasidenib, Modeyso).
    → First true wave of targeted therapies designed with pediatric brain tumor biology in mind.

In summary:
For nearly 70 years, there were no pediatric brain cancer–specific drugs on the market. But in the past year and a half, we’ve seen a historic surge with three first-ever approvals—a dramatic shift that signals the start of a new era in treatment.

In

MEK Inhibitor

A MEK inhibitor is a type of targeted cancer therapy drug that blocks the activity of MEK1 and MEK2 proteins (short for mitogen-activated protein kinase kinase).

Here’s the breakdown:

  • MEK1/2 are enzymes in the MAPK/ERK signaling pathway, which is one of the body’s main cell growth and survival pathways.

  • In many cancers, mutations in genes like BRAF or RAS cause this pathway to stay permanently “switched on,” leading to uncontrolled tumor cell growth.

  • MEK inhibitors stop MEK from sending those growth signals downstream, which can slow or stop cancer cell proliferation.

Examples of MEK inhibitors include:

  • Trametinib (Mekinist)

  • Cobimetinib (Cotellic)

  • Binimetinib (Mektovi)

  • Selumetinib (Koselugo)

They are often used in combination with other targeted drugs (like BRAF inhibitors) to improve effectiveness and reduce resistance.

Pro tip: The Inhibitor Buddies group on Facebook has been a tremendous resource to me in navigating different drugs, symptoms, and side effects.

In Oncology

Absolute Neutrophil Count (ANC)

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.

In Oncology

Second Opinions

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.

In Neurosurgery

Intracranial Pressure (ICP)

Intracranial pressure (ICP) is the pressure inside the skull and in the brain tissue and cerebrospinal fluid (CSF). If there is a tumor, head injury, brain bleeding, or swelling, the brain can become pressurized like a water balloon, and CSF has nowhere to go. The pressure can crush brain tissue, shift brain structures, contribute to hydrocephalus, cause brain herniation, and restrict blood supply to the brain. In Kiara’s case, elevated ICP caused optic atrophy (blindness due to damage to the optic nerves). ICP is measured in millimeters of mercury (mmHg).

In Neurosurgery

External Ventricular Drain (EVD)

An EVD is a catheter that is inserted by a neurosurgeon into the brain to release cerebrospinal spinal fluid (CSF) and lower intracranial pressure (ICP). It’s basically a tube that drains fluid from inside the brain into a bag next to the bed that can be measured. Drainage can be continuous at a set level, fixed volume per desired time (i.e., every hour), or as needed according to ICP elevations. At the prescribed height, CSF (and/or blood) will drain whenever the interventricular pressure exceeds that set by the height of the collection system. Flow ceases once the pressure equalizes between the CSF compartments in the brain and collection system.

The EVD must be positioned so that that the pressure transducer is in line with the patient’s ear. (Technically, it must point to the Foramen of Monro, which falls at the level of the external auditory meatus of the ear in the supine position and at the mid sagittal line (between the eyebrows) in the lateral position.)  Most nurses “eyeball” it, but some will get a carpenter’s level or laser level to ensure that it’s place accurately. Whenever the patient sits up or lays down, the EVD must be adjusted also, which is a slight — but necessary — hassle.

In Neurosurgery

Hydrocephalus

Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. It typically causes increased pressure inside the skull. Some people may have headaches, double vision, poor balance, urinary incontinence, personality changes, or mental impairment. Other symptoms may include vomiting, sleepiness, seizures, and downward pointing of the eyes.

Hydrocephalus is typically treated by the surgical placement of a shunt system. Before getting a v/p shunt, Kiara had an alternate procedure called a Endoscopic Third Ventriculostomy (ETV) to try to combat the hydrocephalus. It worked well and doctors were fairly confident that there was no increased ICP in her brain, but because of increased vision loss, we opted for a v/p shunt to make sure.

Here is a great video that explains how it works:

In Physical Medicine

Torticollis

Torticollis, also known as a crick in the neck, wry neck, or loxia is a dystonic condition defined by an abnormal, asymmetrical head or neck position. The child has a limited range of motion in the head and neck. The head tilts to one side while the chin tilts to the other. Usually there is a tightening of muscles and the patient is unable to have full range of motion.

When she was 7 months old, Kiara gave us our first scare. She developed a fever and was unable to lift her head off her shoulder. We took her to the pediatrician, who rushed us to the ER fearing it was meningitis.  Fortunately, tests results came back negative and a CT-scan showed no blockage in her neck. With pain meds, she regain full range of motion. Doctors reassured us that “tumors don’t go away with Advil.” After two days in the hospital, we were discharged with a diagnosis of torticollis. Looking back I believe her brain tumor was there in its early stages, and this was our first missed sign.

In Lifehacks

Binder

When Kiara was diagnosed, other cancer moms told me to start a binder for her documents. It was about a year later when she began chemo treatments and she was a new school with a number of specialists that I finally put a binder together.

In Kiara’s binder I have sections for:

  • General Medical. This is where I put info from her pediatrician and dentist, as well as a medical history, immunizations, and labs/scans log.
  • Neurosurgery. This section has the contact info of her neurosurgeons, information about her v/p shunt, and other handouts.
  • Oncology. This is where I keep the contact info of her oncologist, her chemo roadmap, a log of her blood counts (ANCs) at each chemo treatment, and other notes about how her chemo treatments are going.
  • Vision. This section contains contact info for her ophthalmologist and optometrist, and handouts/reports from them.
  • Therapy. This section includes contact info and handouts for PT and OT specialists.
  • Education. This section has contact info for her principal, assistant principal, SpEd teacher, O&M, TVI, etc. It contains ARD and IEP info and other school-related documents.
  • Disability. This section has the contact info for her state HHS case worker and any other government-related disability documents.
  • Other. This is a catch-all section that has documents, such as FMLA papers, donations and gifts, etc.

I wanted her binder to be bright and colorful, and I found this great Medical Printables set on Etsy that makes it adorable. Fortunately the seller also gave me editable files so I was able to make some additional forms that I needed, such as Chemo Counts and School Conversations.