DIAGNOSIS-Dec. 2016

12/5/2016-The next morning, shortly after I arrived at work, both sleepy and anxious, I got a call from our Pediatrician who had read my email.  The doctor instructed me to take Teagan to the Seattle Children’s Emergency Room immediately.  I dropped everything and went home to get Teagan and my husband Jeff (who was fortunately at home, since he is often out of town since he is a pilot). 

December 2016

Walking Teagan into the ER room at the hospital, I was on the verge of tears.  And, once I began describing Teagan’s symptoms, the flood gates opened (as they would for any mother).  The ER doctors explained that they always think worse case scenarios.  They told us they would get a CT scan of Teagan’s head, which would yield results in 45 minutes.   My tears wouldn’t stop, so Jeff carried the conversation. Then, what was most scary is that only 10 minutes after the CT scan, two doctors came back to our room—which we assumed meant bad news.  And we were right.  What happened then was even scarier then I even thought possible.  They handed us her CT scan which showed a very large brain tumor covering the entire back of her head which spanned her entire brain stem.  To say we were in shock is an underestimate.

The surgeons at Seattle Children's rallied immediately and performed surgery that afternoon to relieve pressure on Teagan’s brain. We were warned that the operation had the potential to cause blindness, yet thankfully, the surgery went fine.  Teagan was a champ and came out of the surgery smiling and laughing, even with the stint they had to install to help relieve pressure from her brain. While she was still under anesthesia, she had an MRI which provided helpful information for the next surgery. 

12/6/2016-The next day, one of the nation's premier pediatric neurosurgeons, Dr. Ellenbogen, led the 9.5-hour surgery to remove the malignant tumor.  Time moved at a snail’s pace, until finally at 11:00pm Teagan was resting comfortably on a breathing machine in the intensive care unit.  The doctors prepared us for all possible outcomes (death, paralysis, blindness, etc.)—yet, we found comfort in the fact that the doctors were able to take the entire tumor out (full resection).  He explained that the tumor was cancerous (Medulloblastoma) and that Teagan would likely have had a stroke and died, within the month, had she not gotten the proper treatment.

That night was long and tiresome as the we were not sure what condition Teagan would be in upon wakening—but we were extremely thankful she was still alive. Given the open space in her brain, they needed to watch her closely over the next few days to see how the brain settles and shifts.  Teagan woke the next morning, but she was not moving the right side of her body. An MRI taken that morning showed that she had ataxia (tremors) on her right side of her body, which may or might not improve with time. 

12/8/2016- A great day!  Thank God, two days later Teagan stretched out her little arms and said, “Momma!", and my heart felt like it was rescued.  And, when she sucked her thumb, I don’t think I’d ever been happier in my entire life!  Since Teagan was also breathing on her own, they removed the breathing machine from her room.

12/11/2016- Later that week, we met with the oncologist team to learn about what the future would entail.  They told us that Teagan would need 6 months of chemotherapy starting on December 26th, the day after Christmas, with an additional 6 weeks of radiation after chemo.  The next three weeks were spent overnight staying at Children’s, watching to see if the drain, once turned down, would allow her brain to reabsorb the cerebral spinal fluid.  We quickly learned that Teagan could no longer walk on her own after surgery—yet we were told to remain hopeful that her functioning would return over time.  Unfortunately, the trauma from the surgery, and the plethora of steroids she now needed developed into Posterior Fossa Syndrome (inconsolable fits). Teagan was taking heavy pain medications to help stop or minimize these fits, as they would go on for hours with nothing anyone could do to console her.  Fortunately, turning down the drain appeared to be working so the doctors took out the stint and her brain began draining on its own.  Alas, we were finally allowed to go home!  

12/23/2016-Within two weeks Teagan began to show signs of discomfort where she was screaming, vomiting, and inconsolable.  By the time we got to see a doctor, Teagan was still breathing, but she was no longer moving her limbs or responding. They diagnosed Teagan with Hydrocephalus—a condition where there is an accumulation of cerebral spinal fluid in the brain. An emergency surgery was performed to place another drainage shunt and they also inserted her Hickman catheter during that same surgery in preparation for her Chemotherapy that would start in 3 days.  The double Hickman catheter line, which is a long thin tube inserted into her chest vein, allowed Teagan to receive her chemotherapy drugs as well as blood draws, so she did not have to be poked multiple times daily.

Tatum FettigComment