March 2011...My 9 year old daughter Giana had been vomitting since she was in kindergarten. It wasn't anything alarming to her pediatricians since it was only abt once or twice a month. Prior, she would come down with extremely high fevers over 105 degrees but they would only last a few hours with no other symptoms. The vomitting started becoming more frequent, about two to five times a month, but only at night after she was in bed for a 1/2 to 1 hour. At her 7 year physical, it was noted that she had only gained 1 pound & grew only 1/2" in one year. She was sent for a bone study (an x-ray of her wrist) that showed she was 1-1/2 years behind in growth. We were sent to an endocrinologist who sent us for a 4 hour Growth Hormone Stiumulation Test. Her pituitary was releasing the growth hormone but not at full capacity. It was said that maybe she was just going to be small because I am tiny or that she may just be growing at a slower rate. It was also thought that Giana needed reading glasses but just for the right eye. Read on...
Still vomitting, we went to a gastroenterologist who sent her for a colonoscopy, endoscopy, & biopsies of her stomach, intestines, etc. to rule out Chrohn's Disease (my father, John, had Chohns, RIP) and Celiac's Disease. All tests came back negative. Not that I wanted a positive result, but I knew something wasn't right and was getting more upset with every negative test. I started keeping a journal of what she ate on the nights she threw up. I cleaned her room from top to bottom thinking it may be something making her sick. I thougt there might be mold somewhere in her room. She also went for a lactose intolerance test. This came back severely positive! I didn't believe it for a second. For one, she never had diarrhea. She ate lactose products & only sometimes would vomit but again ONLY at night. Someone that is LI would be immediately affected by lactose not hours later.
The vomitting continued. Giana had a routine. We would hear her vomitting & she would get out her pail & sleep on the floor as to not soil her bed. This is what she was used to & we began to believe that this is a child who has a weak stomach & throws up a lot. She began to believe that this was normal.
The vomitting at night stopped for almost 2 months. We thought that maybe she grew out of it! Wrong! She then started to vomit bile but ONLY in the early morning hours. I started keeping another journal. Then she came into our bedroom one morning grabbing her hear complaining of headache. Then another headache. Then 2 mornings in a row. That's it. I took her back to the pediatrician & they finally sent her for a CT-scan. We went the next day and I heard the news that dropped me to my knees. "Donna...it's a brain tumor." OMGosh, my grandfather, Ralph Pannone, died from a Gliobastoma back in 1988. I was numb.
We immediately were sent to Yale Children's Hospital where we met our hero, Dr. Michael DiLuna, Pediatric Neurosurgeon. It was like he had a halo around his head. On 8/26/10, Giana went thru a 7 hour surgery to remove a Craniopharyngioma, a very rare slow growing benign tumor the size of a tennis ball. It was located in "prime real estate". It picked the worst part of the brain. She was either born with it or has had it for a long time.
The tumor left Giana legally blind in her right eye & no peripheral vision in her left eye because of the pressure on her optic nerve. The doctor had to almost take apart her eye to get at the tumor. Some think the eye doctor last year should have saw the pressure when her eyes were dialated. The stem of her pituitary gland had to be removed since these tumors tend to attach to them. She has Panhypopituitarism with Diabetes Insipidus DI, Central Adrenal Insufficiency, Hypothyroidism, & Growth Hormone Deficiency. DI is the loss of DDAVP. Without this, she will output copius amounts of urine & become severyly dehydrated. WIth CAI, her body doesn't make cortisol that helps us deal with physiological stress like fevers, infections, vomitting, dehydration, burns, injuries etc. This can become life threatening for her. She is on 3 medications now & will start growth hormone injections 6 times/week next month. She will be life-dependent on these meds & must wear a medical alert bracelet at all times.
We count our blessings every day. Giana's outlook is positive & she has an even greater spirit. Giana is brave & strong & courageous. She was adopted by the Yale Bulldogs Women's Ice Hockey team as part of the Bulldog Buddies program, a new program that pairs children with brain tumors to one of Yale's athletic teams. This has been the best thing for her. She has gained 22 big sisters & the story was covered by WTNH News 8, The New Haven Register, & AOL Fanhouse.com. A short documentary was also made for the Yale Neurosciences Department (on youtube under "Giana's Story"). Giana has also been granted a wish thru M-A-W Foundation of CT.
Giana is a survivor. And, vomit-free since surgery!!! I hope that doctors will learn that a tumor can affect children differently & that a headache doesn't have to be a symptom. My daughter suffered for almost 4 years with vomitting! The tumor should have been caught sooner!
- Submitted by Donna Cardonita