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

Deja has been diagnosed with a terminal condition called Brain Stem Glioma. 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 her head.  We took Deja to have x-rays done, which did not show any fractures.  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 thought she had a form of whiplash from her fall, and said her headaches would get better over time.  Within the next month, we noticed 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. Some times 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.  Finally, grandma suggested we take her back to the Neurologist.  We saw Dr. Hadden again in mid September (Sept. 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 pretty fast.  She had her MRI on Sept. 25th, and the doctor called me with he results on the morning of Sept. 27th.  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 28th that she had a Brain Stem Glioma, which was described to us as a type of terminal cancer.  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 is very close to zero.  They think without treatment, she may have months.  Radiation therapy can help slow the tumor temporarily, long enough to give her an extra 4-6 months.  We were also invited to participate in several different research groups that involve Chemotherapy drugs, but all these studies are in phase 1, all have great side effects, and none have any proven record of extending her life.  The studies all left us with a guarantee she would be sicker.  The radiation alone might cause some hair loss around the area of the tumor, and may cause her original symptoms to get worse through the first week of treatment, but by the end of her radiation she will 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 will begin on October 11th.  It's about a 120 mile drive roundtrip to radiation every day, which will be tough financing.  She is handling everything very well.  She is a very big girl.  She hates her medicine though.  She requests a McDonald's Happy Meal everyday after her doctor's appointment.  It's getting a bit expensive!  :)


We are trying to plan many things in the near future to show Deja everything we can.  She talks about Sea World again, and wants to meet Mickey Mouse and the Princesses.  We want to take her to Indiana to meet her family too.  Mommy is having a hard time because I want her to see and do everything.  I'm trying to plan something every weekend, even if it's just a movie or a walk in the park.  Funds are low, but we are managing.  I'm not leaving her side, not for one day!  Most of all, she loves being with mommy, so that's what she will get!

The biggest memory I can 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 Phx Childrens.  Her original MRI was reviewed by 2 radiologists at Banner Desert Hospital, and then was reviewed by her original Nurologist, Dr. Hadden. He then referred us to Dr. Kaplan at Phx Children's which heads up the brain tumor team. His team, which consists of a Nurologist, 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 Brain Stem Glioma.

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 peds 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 recieved a phone call from his office. He now wanted the actual films. I dropped them off for him to review the next morning.  The 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 recieved a phone call from Dr. Johnson late Friday evening around 6:30pm.  Both he and the neurosurgeon agreed that the diagnosis from Phx Childrens was correct.  He appoligized, 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.