Tears of Joy.

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.

No kidding.

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.

Learning to wear glasses is not going to be easy.

Learning to wear glasses is not going to be easy.

Thank you.  All your prayers worked.  And now all I have to cry are tears of joy.

Joe Cool after eye dilation.

Joe Cool after eye dilation.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to Tears of Joy.

  1. OMG! I would have been a crying, freaking out, mess through all of that too. I’m SOOOOOOO glad it worked out this way. Hopefully he won’t fight the glasses so much once he realizes that they help him to feel better.

  2. I felt sick to my stomach reading this. I’m so glad the pediatrician finally called you to ease your fears.
    I hope the glasses help-and stay on his face!

  3. Bobbie says:

    Oh what a rollercoaster you were on. I cried along with you and am so glad he has the glasses now. All my love.

  4. Lisa says:

    What an ordeal!! I was getting anxious as I read this. I am so relieved for you guys that he *just* needs glasses. I hope the adjustment to wearing them goes smoothly”

  5. Phew! And he looks even cuter with glasses- how is that possible?! I know this must have seemed like forever, but I’m glad you got your answers relatively quickly. 🙂

  6. Flannery says:

    Oh my gosh, my heart was beating so fast as I read this! I’m so relieved that there’s no tumor. I can only imagine the fear and pain you went through. I can’t believe how dismissive the doctor’s offices were to you. Thank goodness that horror is over.

  7. Teresa says:

    Big hugs to you Karen for surviving this roller coaster of a challenge!

    I was reminded of my dad’s health issue. Twelve years ago he had cancer in his throat and had to endure severe radiation and chemo treatments. He survived has been well until recently. Now he has an irritation and or lump on the back of his tongue. It could be many things. It could be irritation from esophagitis. It could be scarring from the radiation, which he has and struggles with. It could be cancer. Of course, he believes it is cancer. Until proven otherwise we all tend to believe the worst.Human nature, I guess.

    We do hope that the glasses remedy all of your son’s recent issues knowing that the bloody noses and irritated eyes are still going to be a problem due to allergies. My son wore glasses about that age. I hope you got glasses insurance. Matthew’s were constantly getting tossed on the ground and scratched.

    Wishing you a peaceful weekend with a calm heart 🙂
    Teresa

  8. Karla (Mom2MissK) says:

    I would be SO DONE with that pediatrician about now. What an irresponsible asshat. Am I allowed to say “asshat” here? I hope so… you’re always so polite, but your pediatrician has me completely steamed. Actually, “asshat” is rather mild compared to the words that come to mind.

    I’m so glad T is all right and he *will* get used to the glasses (plus he looks absolutely adorable in them). One thing that has really worked for us is a thin elastic strap that helps LM keep her glasses on (her nose bridge is nonexistent so without the strap they are always sliding). Our ophthalmologist sells them for $3.50. Let me know if you want one — I’d be more than happy to put one in the mail.

    (hugs)

  9. blogginglily says:

    Christ, Karen…what a trip! I loved the happy ending here. Sheesh.

  10. D. S. Walker says:

    Glad it is not a tumor, but hate that so many medical professionals let you down.

  11. Cyn says:

    *hugs* I cannot believe the terrible roller coaster ride you have been on and wow….your son 😦 I shutter when I think of how people who are in the health care field to help and soothe can cause so much stress unintentionally and intentionally. It happens here too…I was looking after my terminally Dad a year ago and misinformation and run around when all you want is answers….it doesn’t feel like you are being helped or soothed at all. I am so glad that you could tell us a happy ending and I hope you guys have a nice, happy, and restful weekend.

  12. Oh MY !!!!!! I had no idea your poor little man was having all this trouble and pain. How frightening for ALL of you ! And sooooo relieved to hear it’s no tumor after all. ((((((Karen))))))
    Do keep us posted because our little Gavin complains about “my head hurts” a LOT, as well as rubbing his eyes. Jess had already determined a visit to the optometrist will be the next step, and his teachers at school concur.
    Like you, we know the challenge ahead of trying to get him to wear glasses if this becomes necessary…..
    Hope your beautiful little man gets some relief SOON.

  13. Erin says:

    Oh Karen, I am soooo glad to hear he is okay! I so understand the game of chasing the doctors. Seriously, some of them need a filter between their brain and their mouth. We’ve had a few of those. Go get yourself a big glass of wine and an even bigger bar of good chocolate. You’ve earned it. Hugs.

  14. So happy things are working out for you. Wish you all the best.

    Shakti

  15. A Quiet Week says:

    My heart goes out to you. As I read your post, I saw myself–every action you took, every thought you had was mine. I am glad all ended well for you. My affection and warmest wishes.

    Lori

  16. Lizbeth says:

    It has been far too long since I’ve been here, I’m sorry for that. I’m so glad T is alright. I swear the things our mind goes through when presented with a worst case situation, I would have been right there with you. Hugs and love to you.

  17. Holy Mary, mother of God. That was not okay. Karen, big, big hugs to you and T. (Kelly)

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