How to Support Raymond A. Wood Foundation

May is Brain Tumor Awareness Month. It's also my 40th BIRTHDAY month!

It is classified as, a skull-based, Hypothalamic-Pituitary tumor
it is benign (non-cancerous), but highly recurrent and located in a very dangerous place in the brain
It is located near the Optic Nerve and invades the Pituitary Gland & Hypothalymus

It is classified as Rare Disease, affecting LESS THAN 5,000 people in the U.S.,
It affects most notably in children ages 5-14 years old.
However, it can affect anyone

Once removed, they often grow back TRUST ME, they do grow back
Children, like ours, are left with CHRONIC + LIFE-LONG conditions in parallel with LIFE-SUSTAINING + LIFE-SAVING medication as their daily norm.

Among these things, CHILDHOOD TRAUMA like this creates a wide range of MENTAL HEALTH issues

This is the "Less Invasive" approach - which we chose.
Access to the brain occurs via the child's nose
DID YOU KNOW? Sinuses do not develop until Adolescence. It's true!
Thus, sinus holes must be "created" to mimic the sinus in a childhood patient
A small area of bone is removed from the skull to allow access to the tumor
The tumor is removed through an Endoscope
Depending on the severity, our child's Pituitary Gland was also removed
A skin graft is needed (in our child's case, from the leg)
This graft is used to "close" up the area of the nasal/skull that was used for the removal
A foley bulb (balloon) and drain are placed in the nose to allow the graft to adhere and allow any post-surgical brain fluid to drain
This process of surgery can take 6-8 hours
This surgery included a Pediatric Neurosurgeon, Adult Neurosurgeon + an Nose/Throat Surgeon (a.k.a. Otolaryngologist)

There is NO TRANSPLANT to replace Pituitary Gland
Many survivors - like our child - will experience damage to their Hypothalamus
Damage to the Hypothalamus is irreversible
Childhood Survivors will spend the rest of their life under the care of Neurosurgeons, Endocrinologists & Neuroednocrinologists
There is NO CURE for the chronic, secondary conditions childhood survivors are faced

15 pills/tablets + 1 injectable each day, 7 days a week, 365 days/year!

Adrenal Glands are non-functional; no Cortisol release (no stress hormone).
There is no natural “fight or flight" response” to combat physical or emotional stress, injury or illness.
Daily CORTISOL replacement is required
Emergency cortisol injections (as needed) to FIGHT when the body is in failure (ie. even for minor things like the Flu, a broken arm, etc).
If untreated, it will cause death.

The body cannot hold on to salt & water naturally.
This causes an electrolyte imbalance
This further creates dangerous water intake (slamming a bunch of water), thus non-stop urination – creating life-threatening dehydration.
Daily meds are required to mimic the hormone VASPORESSIN to replicate the body’s natural ability to hold/release salt & water.
If untreated, it will cause death.

Slows your metabolism
Imbalance in insulin levels
Makes you feel sluggish and sad!
Daily meds are required to replicate THYROXINE & TRIIODOTHYRONINE a.k.a. T3/T4 levels.

Cranio Survior's Resting Metabolic Rate (RMR) drops to 25% once the damage is done to the hypothalamus TWENTY-FIVE PERCENT!
You gain weight – uncontrollably and without fault - REGARDLESS of activity or diet.
Risk of heart disease, joint issues, and the ability to be as active as others
Creates Hyperinsulinemia, an issue where you have an unhealthy amount of insulin in the blood (this is not diabetes mellitus)
There is NO TREATMENT for HYPOTHALIMC OBESITY, nor any “weight loss” drugs approved by the FDA for kids under 12 y/o.

There is NO childhood memory created that isn't somehow associated with this disease.
There is NO true ability to replicate the body's natural response to ANYTHING. There is only treatment to mimic it to the "best" of your ability.
NO day is ever the same.
There is no guarantee you are tumor-free forever. Ever.
There is NO end to MRIs
There is NO end to blood-draws
There is NO end to the hundreds of doctors appointments these kids will experience for the rest of their life.
There are NO missing doses - because when you do - you feel terrible, or worse.
There is NO waking up and running out the door w/o taking your medicine.
There is NO leaving the house without a medical bag on your shoulder.
There is NO watching your child fall asleep on the couch and letting them stay there till the morning - they MUST be woken up for their nighttime medication.
There is NO going to school without an Emergency Plan
There is NO end to blood-draws
There is NO joining a sports team or going to a friend's house without having to explain EVERY aspect of your child's medical history in the hopes that someone gets it and understands - and then leave them not holding anyone responsible for taking life-saving measures if something happens.