Before surgery the doctor told use the worst case scenario was Mary Scott might not talk or walk again
May 18, 2016 I took Mary Scott to the pediatrician after months of her waking up with debilitating stomach pains followed by her throwing up. They told me it was migraines and to change her diet. She had also been waking up at night complaining of stomach pain. The next morning which was a Tuesday morning she woke up screaming crying that her stomach hurt and she was doubled over in pain. I'll never forget her laying on the floor of my bedroom screaming. She then followed this with throwing up three times.
I knew something wasn't right so I took her to the ER. I figured she just had acid reflux or something of that nature. The doctor ran all the tests on her stomach and came back and said they can't find anything that is wrong with her. The ER doctor then said they're going to run one more test a CT scan on her head to rule out everything. She told me it would be fine it would come back clear and we be out in no time. Four hours later the ER doctor comes in with tears in her eyes and says i'm sorry to report your daughter has a full-fledged brain tumor. Her brain tumor was the size of a tennis ball sitting on her cerebellum blocking the fluid being able to drain down her spine. This caused major hydrocephalus which was causing the nausea vomiting and all her other side effects. Within two hours of diagnosis after my husband was able to leave his job and get to the ER we met with her oncologist who told us she would have surgery in the morning.
At this point we still didn't know what type of tumor it was and we are praying feverishly it was something that would not take her life. We then met with her neurosurgeon who told us at 7 AM she would have brain surgery. Worst case scenario oh she wouldn't be able to walk or talk again. Her brain surgeon the next morning perform brain surgery for eight hours to remove the tumor. We thought the worst was behind us when the next morning he came in and said he was so sorry he was going to have to go in for round two of brain surgery.
Again thinking the worst is behind us he came in the next morning and said I'm so sorry I was not able to get it all she has to go in for a third brain surgery. So at this point she has had three brain surgeries in three consecutive days. She was into baited and under anesthesia for 6 days. All the while we just kept praying she would live and when she woke up she would be able to talk and move her toes. We then thought the doctor had remove the whole tumor however upon her final MRI two weeks later when she was able to leave the hospital it showed that she still has a P sized tumor. The doctor had to remove a quarter of the right side of her cerebellum which thankfully did not affect her speech however she did have to relearn how to walk do all gross motor activities and fine motor is on her right side.
Straight from MUSC we had to go to Levine Children's Hospital so Mary Scott could receive inpatient rehab care where they taught her how to walk and do all fine motor with her right hand again. This also affected her right eye. She had esatropia and amblyopia which again cause severe headaches nausea and vomiting because her eye stuck in the corner in only one eye worked at a time. So all day long the brain would shut off one eye turn on the other and vice versa which would cause major nausea and headaches and vomiting.
In September she was able to undergo surgery on her eye to make her look like she did pre brain surgery and to make her eyes work simultaneously again. Everyone kept telling us that she would not make it to kindergarten in the fall. Mary Scott worked her tail off being able to regain her fine motor gross motor and cognitive abilities. She underwent and is still in extensive occupational, physical, aqua, and I therapy to get back to her normal self. She still has cognitive difficulties and balance and coordination issues. She also has an MRI every three months to see if the tumor has grown or shrunk. We pray daily that it shrinks if it grows at all she will have to have a fourth surgery chemo and or radiation.