Hi all today we are having a relaxing day. Last night was a bit rough, not a lot of sleep. I realized that some of you don't know the background story that led us to this place, so here goes:
After thanksgiving break, Sarah went back to school focused on final projects and exams, she was very determined to do well. She called us several times complaining of a stomach ache and stress. There were times when she was so upset even Zen couldn't get her to calm down, we attributed those outbursts to the stress and planned on having her talk to someone over winter break. The first weekend in December, Sarah called and said her stomach really hurt, I was in Connecticut at my sisters home, so Zen told her maybe it was her appendix, and she should go to the emergency room and call me.
Imagine, at the time the worst thing we could think of was appendicitis! Sarah called me and said the hospital did all kinds of tests, including Blood work, and a cat scan of her abdomen. They couldn't find anything wrong and sent her back to school. I went to see her the next day, took her to lunch, gave her a pep talk and headed for home, she seemed no worse for the experience. One week later Sarah babysat for her cousins and had a great time, when she got back to school she felt nauseous and vomited.
She felt sick the next day, but thought she had picked up a little bug from the cousins, finals started that Tuesday, 12/13/11 and she was headachy and stressed. Being my usual helicopter
Self, I made the necessary calls, got her out of her exams, and prepared to go get her that day. True to form when the dean called to let her know she was excused until after break, my little fighter told him, "no way, I am not waiting, I do not want to study over break, I will take them now!"
So much for mom's help. Greg picked Sarah up on Friday 12/16/11 and they headed home, I was still recuperating from cataract surgery, (ha ha I am not that old) and they both prepared to work the next day. Alas, Saturday came and Sarah was again not feeling well, so instead of working she went to her first of many doctors appointments.
A tired, stressed out 19 year old goes to the doctor, says she has a headache and feels nauseous, he says flu. As the symptoms continued we paraded Sarah to a host of other doctors: orthodontist for possible TMJ, psychologist for crankiness, back to primary care, this time they said strep, and did blood work for mono and Lyme at my insistence; then onto the obgyn, maybe her hormones were out of whack. Through all these attempts to figure out what was wrong, Christmas and new year's came and went, and poor Sarah basically slept through it all!! Finally on January 3, the primary care doc called and said that Sarah had Lyme disease, a prescription was being called in to the pharmacy. Whew, finally we knew what was wrong, Sarah would soon be well! Still barely eating and vomiting, Sarah took her meds and kept on sleeping. The next afternoon, Greg noticed that Sarah's pupils were dilated, when I looked it seemed as if she was crossing her eyes, since I was going back to the eye surgeon the next day for a follow up, I called and asked if Sarah could be checked. That my friends brings us to Thursday night, 1/5/12. Thank God a hundred times over, Dr. S saved my baby's life. While examining Sarah's eyes, he noticed swelling behind her eyes and a change in her vision. Since she supposedly had Lyme disease, he called an infectious disease dr. and got us an appointment for 9am the next morning.
The ID doctor was not convinced that Sarah had Lyme, and was considering doing a spinal tap, until she checked with the eye dr. After hearing his findings, she immediately called a neurologist and set up an MRI appointment for that same day. All Sarah wanted to do was sleep, but Zen and I dragged her to "1 last appointment," famous last words! The MRI was scheduled for 2 pm, it was an open MRI, so I stayed with Sarah, we were there until 3:30 pm. At this point none of us had eaten, we were all tired and cranky so we headed to the club to pick up dinner, 3:45pm Zen' phone rang, and our lives were changed for ever! We were instructed to go directly to Overlook Hospital where the Neuro team would meet us. I think Zen and I were both in shock at that point, we went through the motions of getting her admitted, Neuro critical care, our baby was really sick. I called our dear friends, Caryn and Jim, somebody needed to bring Greg, and fast, they rose to the occasion as we knew they would. Later that night, after Sarah was hooked up to several monitors, and tests were scheduled for the following day, the reality started to sink in. I stayed at the hospital with Sarah and Zen went back and forth. Our days were filled with fear, hope, and anticipation as Sarah had test after test to determine what the mass on her brain was. After Six days filled with 2 MRI's, a cat scan, a biopsy, EEG, several neuro evaluations, and more blood work then I can count, we went home armed with steroids and anti-seizure medicine to await the pathology reports. On Monday 1/16/12 we got our answers, we headed back to Overlook Hospital, this time we were instructed to enter through the Carol Simon Cancer Center, I will never forget the look on my daughters face as we stood in front of those doors, she just stopped, looked, and said, "You never told me that I had cancer!"
That my friends is the story behind our story. We are taking our days one at a time, thankful for our daughters courage and determination, and also for the amazing staff at Overlook Hospital. The compassion, knowledge, care, and guidance we have received has been remarkable. I do not want to post any names without permission, but please know we have had nothing but the best possible experience here at Overlook, these amazing people have made this unimaginable journey easier to endure.
On a lighter note, thank you all for your continued support, prayers and well-wishes, keep them coming. Please just hold the sweets, Sarah has enormous self-control and doesn't really eat sweets, Maria, no self- control, never met a sweet I didn't like!!!!
Bye for now,
M
