Thank you all for your kind words of support last week.
All the weekend, I stewed in the news. Why in the world would she tell me the story of a boy with a craniopharyngioma if it did not apply in some manner to the symptoms my child was manifesting?
On the same day I got the diagnosis, I called the specialist’s office. The phone answerer said they had no referral. I’d have to wait for it to be processed. She had a stack of them on her desk. I should call back next week. In my mind: he has a tumor and you want me to call back? If I argue, will I look nuts? Will she dub me a hard case? Will she simply tell me to get lost and find another doctor? I’m too much trouble? So, I shut my mouth and tell myself I will call back later.
Friday comes. I don’t call in the morning. I wait. Should I call? Will they think I’m crazy? Causing trouble? I can wait. It’s just Friday. I’ll wait it out over the weekend. Over the weekend, he says his eyes hurt. He cries himself to sleep all weekend saying his head and eyes hurt. Nose bleeds in his sleep. My fear mounts.
By Monday morning, I’m good and upset. Why did I let Friday go by without pushing some doctor for answers. My son is hiding his head in my chest as I take him to the school playground for the morning drop off at school.
I call the referring doctor. Her office says they have not sorted through the last week’s referrals. (Really?!) I should call back later. Look, I tell them, my pediatrician said “craniopharyngioma” and I’m freaking out. The phone answerer says that I should have my pediatrician call the specialist and tell her it is an urgent referral.
I call my pediatrician’s office. My pediatrician works only on Tuesday and Thursday. They will give the message to the doctor on duty. Maybe she’ll get to it, or my pediatrician will do it on Tuesday. They will leave her a message. I hear nothing.
How about if I call the neurologist? Yes, our neurologist has an old MRI. He can read the MRI and tell me if he sees any signs of a tumor! I leave a message. There is a nice nurse and a not-so-nice nurse. Guess who calls me back? Yes. The not-so-nice nurse. I tell her about the craniopharyngioma and how I want the doctor to read the MRI and tell me there is no tumor on it.
She says, “We didn’t refer you to Dr. S because of a tumor….” I told her I got it from my pediatrician. She cut me off and said, “Well, if you got the diagnosis from her, you’ll have to call her office.”
Are you kidding me at this point? I wanted to tell her that I’m not an idiot. I know that my pediatrician is making a referral because she is not an expert in the area. My neurologist is an expert. I want him to read it. Is it really that hard? She says she will give him the message. Guess what? Neither he nor anyone from his office ever called me back.
Meanwhile, my pediatrician did not call back on Monday, either. My son cries himself to sleep Monday night as well. Another bloody nose. Now, his behavior is spiking. He is melting down after baths, when I comb his hair, in the last hour before bed.
Tuesday morning rolls around. By this time, let me give you a little scenario of what kind of crazy is running through my head at this point.
My son has cried himself to sleep complaining of head pain every night since a week ago. He’s hit himself in the eyes. He cannot read more than three words in a sentence without looking away and then it takes 30-90 seconds to get him to read more. The teacher says he’s bending over his book, practically to the floor in class. The tutor pulled him out of the classroom to take his spelling test because he was rubbing his eyes. He’s coincidentally had a bloody nose all week and soaked his pillowcase with blood for five days in a row, waking with dried blood on his nose. He’s asking me to read in his place. He’s shoving his head with deep pressure in my chest, stomach, arms and side. He’s constantly rubbing his eyes.
At this point, I’ve come to imagine him going through surgery to have a tumor removed from his brain. I’ve imagined the worst. I’ve planned how I will commit suicide if something happens to him. I cry at stop lights. I feel like I’m in a living nightmare. No one is responding. No one is addressing the issue.
I call the specialist’s office at 2 p.m. on Tuesday afternoon. The phone answerer says she cannot find our referral. Again, I tell her about the tumor. She places me on hold. After about 3 minutes, she comes back and has found the referral. She says she will set my son for the first available appointment.
September 12 at 1:30.
I burst into tears. Again, she says to get the pediatrician to call the doctor and they will move my son up on the appointment list. I call the pediatrician’s office. The woman who answers does not speak English. She misspells my name. I shout the correct spelling through tears. She puts me on hold. A man picks up. He says, “I know how you feel,” I cut him off and clearly state: “No, I do not think you do.” He says they can get my son in to another specialist or the doctor will call this one. Someone will call me back. “When?” I ask. This afternoon or tomorrow.
Another day with no response.
The following morning, I’m getting my morning coffee. At this point, I’m exhausted. I’ve forgotten things like my son’s water bottle and syringe for his medicine at home 30 miles away and have to drive an extra 60 to get it to him at school. The phone rings.
It’s my pediatrician. My pediatrician says she’s sorry. She says she should have never told me a story she found interesting but had nothing to do with my son.
Now, believe it or not, I welcomed this call. I prayed for this call. I prayed that she would call and tell me she did not think he had a tumor. I prayed for the worst thing that happens to be that my pediatrician made a mistake in telling me a story that does not relate to my son.
She prescribes allergy eye drops and tells me to take him to see an optometrist. My optometrist is a long time family friend. I should have gone to him from the beginning. We saw him on Thursday. He’s gentle, friendly, and kind. He dilated my son’s eyes. My son has a healthy optic nerve with no damage – no impingement. He makes phone calls to the specialist and the pediatrician. He soothes my nerves. My son needs glasses because he is far-sighted. He could still have an issue but it’s the neurologist who will make that call when we see him in July.
Thank you. All your prayers worked. And now all I have to cry are tears of joy.