Hilary's Mom

November 14, 2005

 I have written things down for over a year now. I think that finally, trying to remember things has gone out the window! When our family's routine was interrupted last November, we had no idea what was about to take place; and we certainly had no idea that what we knew as normal would not be visiting us again.

As a Mom, I always knew that whatever needs my children would have, I would jump to take of, including cleaning them up and ministering to their minor boo-boos (my husband and I have bought thousands of band-aids in our years of parenting). What we didn’t know, or ever expect, was that our youngest child would come up with a brain tumor, and an extremely rare endocrine disorder.

As healthcare professionals, my husband and I are not too quick to keep our daughters at home at the first whimper of an ailment. So, it should come as no surprise that last summer when Hilary told me she couldn’t see as well out of her left eye as out of her right, Iresponded with “You just got new glasses 3 months ago; you’re fine.” As the summer progressed, she mentioned yet again, that she was seeing ‘spots’ out of the left eye. So, I begrudgingly made her appointment and took her to the opthalmologist, who in turn saw nothing abnormal with her eyes and thought maybe Hilary was having floaters and told us if it continued or was too bothersome, to come back. Well, we left on our cruise at the end of July, came back, bought school clothes, and the girls started their fall semester—Meagan a Sophomore, Hilary a 7th-grader. About the 3rd week of October Hilary got a kidney infection and was treated by her Pediatrician (who has seen her since she was 6 months old) with antibiotics. In the interim, Hilary had been telling me that she felt her legs were weak and wanted me to write an excuse for her to sit out in PE class. You got it, I said, “No Hilary, I am not writing a note to excuse you from exercising; you’ll feel better once you get moving around.” Hmm… On another occasion, she came to me as I was getting ready for work, and told me her hands and fingers were tingling and feeling a little numb. Hmm… Again, I am a healthcare worker married to another healthcare worker, and so told her that she probably just slept on them and they were “waking up.” Hmm…(How many red flags does a person need?)

As I picked her up from school the Friday before Halloween, she remarked that she had had a bad headache all day and was feeling sick to her stomach, and was dizzy. In the back of my mind I thought: Migraine...this child is getting a migraine. I picked up Meagan from High School, ran by the video store, and blehhhhh…that’s when Hilary lost her cookies.

She was in bed the rest of the day. By Saturday morning, she was much better and had no symptoms. Sunday morning, though, she started having the same symptoms as she had on Friday. By the evening, she felt much better, made a costume for Halloween, and went out with her friends. Monday morning, I woke her for school, and she was feeling dizzy and nauseated; and her words still ring in my head: “Mom, I am seeing a blanket of black out of my left eye.” I called the pediatrician’s office; they squeezed her into an afternoon appointment. After 2 hours of the doctor’s perplexity and concern and a mention here and there of a tumor — (what? Did he say tumor? No, surely not) — and whether he should send her to the opthalmologist or to a neurologist, he decided to let us take her home and wait until he heard from the pediatric neurologist. By Tuesday afternoon, I had heard nothing. Tired of waiting and being so inconceivably dependant on one person to call me back, I called the opthalmologist’s office at 4 pm. I was not prepared for the response that I received from the eye doctors’ assistant: “You need to bring her in right now.” I literally was dumbfounded, and told them their office would be closed by the time I left work, picked up Hilary from school and got back to the medical center where she could be seen (all words for DENIAL). I assured them I would bring her in first thing on Wednesday morning, November 2nd, 2004.

I took her in to the eye doctor, where they tested her field of vision, and found she could only see peripherally in the left eye—she was actually blind in her central field of vision in her left eye! The doctor immediately sent us to the hospital to have an emergent MRI of Hilary’s brain. Unbeknownst to us, were the whirlwind of events that lay ahead.

As I met my husband in the Radiology Department, as our co-workers and friends of 14 years in the same hospital came to sit with us, Hilary was taken back in a room to be scanned. As the whir and the ping of the heavy equipment sounded all around us, I sat with her, holding her hand, praying that God would let everything be all right.

We have an amazingly supportive group of family, church friends, and co-workers (our other family); that we’ve known existed, but never knew how much we would need them in the weeks and months to come. I can't tell you how much and how many people Hilary's life has touched--she truly is an amazing child; and her sister Meagan, who is a wonderful gift of life and joy to others, is her biggest protector!

(This is only the first 2 days of finding out about the first tumor! I'll be catching everyone up on the remaining 12 months after I've had a little sleep! God bless you all, and thank you for caring and being so compassionate. I love to read all the entries in the guest book. It truly does make us all feel loved and treasured. -- Philippians 1:3)

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