TeamNEGU Blog

Gabrielle’s Story from her website

t’s amazing how life can change so fast! I never thought that day would happen to me. My youngest daughter Gabrielle, 5 years old, has been in and out of the doctors and hospitals since December. It all started when we took our trip for Florida. But in the middle of the trip Gabby woke up in the middle of the night laying on the floor in a pool of urine, bloody nose and eyes rolling in the back of her head. She was unresponsive we called 911…by the time they came she was fine.We got to Arnold Palmer children’s hospital and basically they tell me her peeing was due to a bad dream, bloody nose was due to picking it and tested her strep throat! When we returned home from our trip she went to the pediatrician, doctor ordered blood tests and they sent her to see a neurologist. In the meantime Gabby had been complaining about walking up the stairs but she had strep throat at that time. After her strep throat was better she was still complaining and making me carry her up the stairs.On Jan 31 she went to cheer practice and at the end of practice was rolling on ground saying her tummy hurt. On the way home she started vomiting. Virus was going around we figured that’s what she had but when he got home with her her lips were blue and her eyes started rolling in the back of her head. Dom immediately met the Haverstraw ambulance, The ambulance took my daughter quickly to Nyack hospital. Vitals were fine. Nyack hospital took blood work and urine sample and then treated her for dehydration…she went home. She had become pale and lethargic Gabby was still ill and she had a neurologist appt on Feb 2. Nuerologist examined her and concluded it was febrile seizers. Doctor sent her out to get an EEG (PS Came back normal). Still with fever that was now staying at about 102.5-103 for 4 days I decided to bring her back to the pediatrician. On the same day Nyack called to check up on her and told me that her urine showed a sign of having an infection. She forwarded all the paper work to the pediatricians office. Dr. Quinn ran another urine and blood test, her white blood cells were higher now and was concerned because urine showed a rare bacteria and sent her to MRI for sonogram.After the sonogram it went all down hill. We got a phone call that our daughter had to get rushed to the hospital for testing because she has a large mass above her kidney. Nyack could not diagnosis and sent us to Westchester Medical. Sonograms, CATs, blood tests, xrays have been done. We Finally got the most devastating news of our lives! They told us our daughter may have a cancerous tumor. We finally met with the pediatric surgeon and he gave us even more bad news, It was in fact a mass the size of a grapefruit on her adrenal gland that is going up her bloodstream in to the right side of her heart and that it could be one of three tumors: Adrenal-cortex carcinoma, Nueroblastoma, or Wilms Tumor. That was the first night. we did not think it could get even worse.The second night he tells us he thinks it is Adrenal-cortex carcinoma which she would be in the 4th stage and her chance of survival is 20%. Her chances of having this is 10% of 0.2% and symptoms would include onset of early puberty and masculine features. So next is nueroblastoma but it is not known to travel outside the adrenal gland. Then he tells us Wilms which is known to travel but affects the kidney which is supposedly not on the kidney. Then he brings a new tumor in called pheochromocytoma which is also on the adrenal gland and if she has this she can not have anesthesia. They did 24hr urine specimens for 3 days in a row, took 11 viles of blood on one day and 8 viles of blood on the next .We Finally decided to move to Columbia being her condition was getting worse by the day. She needed a place not only for cancer but for the heart as well. It was really scary the first 2 days they told us she had a small window of making it and that if she didn’t go to surgery right away she would not make it at all. They were concerned of Liver failure and they were not even sure if she had already gone into failure. She went into surgery on 2/22/12 had a bypass estetic blood vessle put in and took her liver, kidney, gallbladder, appendix out . Liver was fine thank goodness and they put it back in. It was a 14 hr surgery and she passed with flying colors. She has had 6 more surgeries since. They are still not 100% sure on which cancer she has but they are aiming towards Neuroblastoma. chemo will start the end of this week.

 

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