Gianna Erdmann

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Gianna was diagnosed in October, 2020, with epilepsy.  We just happened to catch some odd behavior during dinner where she took spinach off her plate and put it under the table.  We were trying to interact with her and she was looking at us but not seeing us.  She “came back” after 30 seconds or so and couldn’t tell us what she was doing.  The next day we had a similar incident where she was non-responsive.  I knew at  that point she was having seizures - but didn’t understand much more.  She underwent neurological testing, including an EEG.  During the EEG she had several seizures.  She was diagnosed with “Focal Seizures” that were originating in her left temporal lobe of her brain.   The next step was an MRI of her brain.  The MRI came back as negative, but also that much of her brain could not be viewed because of her braces.  We of course said, let’s then remove the braces and retest.  There was reassurance from our neurologist that it was not necessary.  We are now processing this decision.  

We were put on medications, but we believed they were giving Gianna headaches.  We’d switch medications and the headaches would subside and then persist.  We blamed the medicine, even though our Dr. would tell us that the medicines usually did not cause headaches.  Her seizures also persisted.  I was determined to figure out how to “FIX” this....We met with a  very good nutritionist and made some diet changes.  Seizures and headaches became part of our lives.  Explaining to people about Gianna’s disease, that she might “blank out” and what that meant.  Jeff and I worried about “would she be able to swim safely”. “Drive a car” or other things we take for granted when we don’t have to worry about having a focal seizure.  We got a second opinion from Boston Children’s Seizure Center.  We were instructed to get Gianna’s braces off to get a full MRI - a tumor had to be ruled out.  That second opinion came March 8.

Last Friday, March 12, Gianna was at the park when major head pain set in.  It was so excruciating that we drove her to the ER.  En route I called her Neuro - and we talked though the situation.  We were literally parked outside of the ER....and we did not go in.  We instead took the advice to grab some excedrin...sounded like a migraine, and migraines are not related to her medicine or seizures....get Gianna in a dark room and her pain and headache would subside.  After three sleepless days and nights of poor Gianna vomiting and being in excruciating pain,  - (including a trip to the pharmacy for migraine prescriptions that didn’t work....) We got in on Monday night to see her pediatrician and she was treated with toradol for the pain and a ton of liquids given by IV.  She seemed to bounce back.  By the next morning, the pain was back with a vengeance.  After consulting the pediatrician on call., we headed to the ER.   We walked into the ER on Tuesday afternoon.  

They got Gianna’s pain under control and she was taken for another MRI with contrast to get more clarity because of her braces..  The results were devastating.  We were called outside of Gianna’s room to an empty room down the hall.  They found a cancer spot - in her left temporal lobe - the same area in her brain where her seizures originate..  We were being admitted and we would meet with the neurosurgeon.  Unimaginable.  

The past few days have been a whirlwind.   We met with the neuro-surgeon who told us that the mass was bleeding, and that was the cause of the pain.  He advised emergency surgery.  He would be operating on her brain to remove the tumor.  We looked at the MRI images.  The “spot” was an understatement.  It was the size of an egg.   Our surgeon has been AMAZING.  He talked through all the risks - the size of the tumor, that it looked vascular (not good), and that it was very close to the area in the brain that controls speech function.   Terrifying.  The surgery would last all day, and we’d start the next day at 6am.  We walked back in the room to sit down to talk to Gianna - to explain to her that she had a tumor and that is what was causing her headaches, and we were going to take it out so she would feel better. 

Wednesday, March 17th, was her surgery day.  The leprechauns left G some fun gifts she got to open before heading into her operation.  We didn’t see her again until that early evening.  It was a very, very long day.  The surgery went well, Gianna is so strong and she is a fighter!  We won’t know how successful the surgery was until her next MRI on Thursday, 18th,  We are grateful for her Orthodontist who came to remove Gianna’s braces so we could finally get a good look without artifact from all the metal in her mouth.