Deja's Story

Thank you for visiting Deja's Website and reading about her story. We welcome any comments or thoughts. As you can see, she was a very special girl.  We will do our best to keep the site updated. Thank you!

Deja was diagnosed with a terminal condition called Diffuse Intrinsic Pontine Glioma (DIPG) in September of 2006. Below is the story of her diagnosis.

Deja's story started in the beginning of June, 2006. Deja was playing on the couch and fell and hit the back of her head on a coffee table.  While there was no real complaints from Deja at the time, she gradually complained of pain at the base of her head over the next few days. By day 3 after the fall, we took Deja to be seen just in case. The doctor ordered x-rays, which did not show any fractures, and suggested a mild "whip lash" from the fall.  As the months continued, she started complaining of headaches, so grandma (the nurse) suggested we see a Neurologist.  We visited Dr. Hadden in mid-August. He agreed that she probably had a form of whiplash from her fall, and said her headaches would get better over time.  Within the next month, we noticed other strange symptoms.  It started with a limp in her left leg when she walked. She began dragging her left foot when she ran, then soon started to hold her left hand up strangely. This was followed by weird eye movement. Sometimes they would cross, and other times she would have to tilt her head to the right to see out of her left eye. Grandma even noticed that only one eye would blink. Her last symptom was her speech. It started to slur and she was harder to understand.  Grandma suggested we take her back to the Neurologist.  We saw Dr. Hadden again on September  21st. He could not believe his eyes. His words were, "this is not the same child I saw a month ago".  He watched her play for a long time that day. He told grandma and I that he thought she may have some type of tumor in her brain or spine. He sent us for an MRI.   Everything after that happened so fast.  She had her MRI on the morning of Sept. 26th, and the doctor called me with the results on the morning of Sept. 28th. I was in the car and had to pull over to talk. Sure enough, the preliminary results showed a tumor around the brain stem.  We were sent to Phoenix Children's Hospital for admission that same evening.  Deja was seen by many different doctors in the following days, and we were told on Sept 29th that she had a Brain Stem Glioma, which was described to us as a type of terminal cancer.  This was not a tumor "around" the brain stem, but rather spider-webbed "through" the brain stem. This has nothing to do with her fall in June, except for the fact that it helped us find it.  This is not inherited or genetic.  The doctors explained that the survival rate of this tumor was zero percent.  Without treatment, Deja only had 4-6 months.  Radiation therapy can help slow the tumor temporarily, long enough to give her an extra 4-6 months (8-12 months total), and maybe even a few months symptom free.  We were also invited to participate in several different research groups that involved Chemotherapy drugs, but all these studies were in phase 1 research, all have nasty side effects, and none had any proven record of extending her life.  Each study only guarenteed she would be sicker and would spend all her remaining time in the hospital, which is not how we wanted her to live out the rest of her days. Radiation, on the other hand, would only cause some hair loss around the area of the tumor, and some fatigue, but by the end of her radiation she would be at her best.  This is the route we decided on, Radiation, which will be 6 weeks long, 5 days a week, and will require her to be put to sleep each session because of her age to keep her still.  

She was released from Phoenix Children's on Friday, October 6th.  She had her radiation simulation on October 9th and did very well.  Her radiation started on October 11th.  Our drive to and from radiation was 110 miles round trip. Grandpa took time off work to drive Deja and I everyday. She handled it so well and was a very big girl.  She hated her medicine though, but still took it without a fight.  She requested a McDonald's Happy Meal everyday after she woke up from radiation. Grandpa never said no, but I imagine it got a bit expensive!  :)


We planned as many things over the next few months to show Deja everything we could.  She talked about Sea World again, and wanted to meet Mickey Mouse and the Princesses.  We wanted to take her to Indiana to meet her family too.  Mommy had a hard time because I wanted her to see and do everything.  I almost had something planned every weekend, even if it was just a movie or a walk in the park.  This is hard to do when you are a single mom.  I never left her side, not for one day!  Most of all, she loved being with mommy, so that's what she got!

The biggest memory I could leave her with is LOVE!

Here are some links that explain her diagnosis.

www.stjude.org/disease-summaries/0,2557,449_2160_5033,00.html

www.childrenshospital.org/az/Site762/mainpageS762P0.html

2nd Opinion

Many of you have asked us whether we have considered a second opinion. First, we want to say that we have always been very confident with our medical team at Phoenix Childrens.  Her original MRI was reviewed by 2 radiologists at Banner Desert Hospital, and then was reviewed by her original Neurologist, Dr. Hadden. He then referred us to Dr. Kaplan at Phoenix Children's which heads up the brain tumor team. His team, which consists of a Neurologist, an Oncologist, a Neuro-Oncologist, as well as a Radio-Oncologist, all reviewed Deja's MRI and PET scan.  Together, as a team, they diagnosed Deja with a DIPG.

As a mom, I really felt that it was my duty to get a second opinion, for Deja's sake, no matter how confident I was in the doctors. I made a phone call to Barrow Neurological.  I was offered a doctor's appointment with a Dr. Johnson (a pediatric neurologist) IN FEBURARY!  I explained to them the situation, and I was concerned she may not have that much time.  They asked me to fax in a copy of the MRI report which they would have the doctor review. Shortly after my fax, I received a phone call from his office. He now wanted the actual films. I dropped them off for him to review the next morning.  They called me later that day and explained they were having a neurosurgeon review the films as well, and they would be back with me soon. I received a phone call from Dr. Johnson late Friday evening around 6:30pm.  Both he, his team, and the neurosurgeon agreed that the diagnosis from Phoenix Children’s was correct.  He apologized, and explained the size of the tumor, and the reasons while surgery is not an option for these patients.

We thank the doctors at Barrow Neurological for their kindness.