Hilary's Dad
November 7, 2005
Children of healthcare workers get cut no slack. The old "My stomach hurts--I don't think I should go to school today" ploy usually doesn't fly around our house. I’m an Emergency Room R.N. with 18 years experience, and Connie is a Respiratory Therapist / Nurse Educator. So, when Hilary started telling us things like "I'm really dizzy" one day or "I can't seem to get my fingers to stop feeling numb" another day, we would roll our eyes and re-enforce the fact that YES, she WAS going to have to go to P.E. that day. It was only when those complaints were coupled with the other things that started happening: a constant headache; nausea / vomiting; progressive blindness in the left eye; that it occurred to us that something might be terribly wrong.
After a lengthy visit with Hilary’s pediatrician, another lengthy visit with her ophthalmologist, and an “emergent” MRI, I got that call that no parent ever wants to get. Connie called me on my cell phone at work. She told me that the doctors had just informed her that our precious 12 year old baby daughter had a large brain tumor (pituitary, actually) that was PROBABLY benign and could only be removed by surgery. Wow…your world just kind of stops spinning. After we concluded our conversation and said our “byes”, I couldn’t think clearly enough what button to push to end the call on my cell phone, let alone to finish my shift in the E.R. I remember driving home in a daze. Most of that afternoon was spent holding Connie’s hands in mine, talking some, but mostly just staring off at some invisible spot in space, trying to understand what we’d been told. Of course, as a dad (and a nurse) I felt like I should have somehow CAUGHT this earlier. Why didn’t I see this coming? Only after talking with Hilary’s pediatrician, who has followed her since she was 6 months old, and talking many late nights with good friends and family did I realize that no one could have seen something like this coming. I believe…no, I know, now, that it was the Great Deceiver or one of his demons of despair that was whispering in my ear those feelings of guilt and regret. They still whisper, but mostly I ignore them these days.
At 1st, we were referred to a pediatric neurosurgeon who told us some good news--- that Hilary’s tumor would be able to be removed through her nose via one of the sinuses. Less pain than conventional surgery and faster recovery time sounded good to Hilary and us. The bad news was that this doctor hadn’t done that approach since the 70’s. Oh!? He referred us to an adult neurosurgeon, Dr. Chris Bogaev (Dr. B.), who we were told was among the top five neurosurgeons in the country. This is when we REALIZED God was taking an active part in this child’s care. He had been all along, of course, but it’s nice when He lets us see it from time to time. First, Dr. B’s office is ¼ mile from the hospital where we work. Second, his eye doctor is Hilary’s eye doctor. Hmph! Third, Dr. B is a man of God. He has shared with us since then that he and his wife, who is a cardiologist, prayed for Hilary on her surgical days and her hospital recovery days. Well, we got to Dr. B’s office waiting room that 1st day and took a seat. I hope none of you reading this ever have to sit in a neurosurgeon’s waiting room with your child or someone you love. Some of the other patients couldn’t move one side of their face. Others had to use apparatus (es?) to walk or talk. Still others had blank expressions on their face like nothing registered, or if it did they couldn’t respond. Anyway, after making it to the back of the office, we met with Dr. B for the 1st time. We were more at ease with him than we had been since this whole thing had started. He oozes competence, yet is humble to a fault. He agreed that, yes, this type of tumor can be removed through the nose. We were referred to a pediatric endocrinologist, since the pituitary gland secretes so many hormones. Blood work was done, an EKG was obtained, as well as a chest x-ray, and we waited a couple of days for a surgery time slot. We got that time slot, everything was lined up, and then, as things often do, everything changed. Dr B called us back in and said that after reviewing the MRI, Hilary’ tumor was too large to get out through the nose. He told us he would feel like he could do a much better job of removing more of the tumor if he went in through the skull (craniotomy). This involved making an incision from one ear to the other like where a headband would go. Dr B would only have to shave a ½ in. wide strip of hair all the way across. The scalp would then be pulled forward and the frontal segment of the skull bone would be removed along with the top 3 bones of each of the orbits (eye bone). At this point all I could think of was that my world was tilting on me. After a few breaths my ears started working again and I heard Dr B explain that he had published an article in a medical journal explaining this very procedure, and that, oh, by the way, he was the one that came up with this approach. He even had before and after pictures of previous patients as well as pictures of the procedure in the copies of the article he kept in the office. We agreed to proceed per his recommendation.
On the morning of Hilary’s surgery, God showed his presence once again. Over 100 people showed up to give Hilary hugs, pray with her before hand, and to sit with Connie, big sister Meagan, and me. There were family members, neighbors, church friends, co-workers, even my elementary school best friend’s wife came! We really overwhelmed the surgical waiting room where each patient was to have only two visitors. Oh, well. The surgery lasted a little over six hours with phone updates every 1&1/2 hours. Food just doesn’t feel right in your stomach in times like this.
The next time we saw Hilary she was in a Neuro ICU bed with a dressing across her head. Her eyes were bruised and so puffy they were almost closed shut. The end scenes of Rocky flashed in my head. She had a subclavian central line (a large diameter IV in the vein under the clavicle) and an arterial line in her radial artery in her wrist. All these lines were connected to a monitor suspended from the wall. It was very overwhelming and I had worked in the ICU’s in Abilene and Houston. It had crossed my mind as she was rolling into the surgical suite, that we might not get our Hilary back from this surgery, even if she physically made it through , you know what I mean? However, she knew when we walked into the room and all of her cranial nerves seemed intact! No facial droop! She could once again see out of her left eye! Her vision was back to normal! I imagine God smiled when he saw our tears of joy.
(more to follow)
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