Our Journey

I will forever remember the date of Wednesday March 6, 2013 as the devastating day that turned my life upside down.

It started about 18 months ago when I realized that my daughter was way more clumsy than she ought to be.  She would literally fall over thin air.  She also starting having night terrors every single night.  And during the day she would just lie on the ground moaning.  I finally called my pediatrician and told him something was off.  He sent us to a sleep specialist to get a sleep study.  She was then diagnosed with sleep apnea.  I was satisfied with the answer and went about my life.

A month later around Halloween 2012 she became extremely terrified of heights and refused to do the stairs.  Her clumsiness increased as well.  She ended up falling down our deck stairs all the way to the cement because she couldn't do the stairs.  I again became suspicious that something was off.  But I again blew off the feeling.

Thanksgiving quickly approached and I thought I started to notice her left eye crossing in.  It wouldn't cross all the time and it was not a drastic cross so I thought my mind was playing tricks on me.  I ignored it and went on with my life.

Come New Years Eve her left eye was crossing dramatically.  I also noticed that her right eye was crossing now too.  I procrastinated calling my pediatrician because we had no insurance.  My husband was laid off in November so our insurance was void.

By February we were able to get on medicaid for the children.  I was finally able to call me pediatrician and made an appointment.  At our appointment he decided that we needed an appointment with the opthamologist for her eyes and he wanted to do a base MRI scan of her brain.  He even said he didn't think it was a brain tumor but maybe there was something that would tell us why she was so clumsy and was now having problems with her eyes.

We went to the opthamologist the last week of February and found out that she has completely dropped sight from her left eye and that she needed glasses.  The following week is the most devastating week of my life.

The morning on March 6, 2013 we came to Primary Children's for Brylee's MRI.  It was only supposed to be a 30 minute MRI.  After an hour passed a doctor came a got me and my husband from the waiting room and said he needed to talk to us.  He took us into a conference room where they had a picture of her MRI on the wall with a big projector.  Dr. Carol Bruggers was sitting at the table.  Cory and I sat down and she said that they had devastating news for us.  She then informed us that Brylee had an infiltrating brain stem glioma, a brain tumor also known as a DIPG.  She said that since it is so interwoven into her brain stem it is inoperable.  I started bawling and don't remember anything else that was said.  It is one of the most devastating feelings I've ever had in my life.  I finally calmed down enough to ask Dr. Bruggers how much time was daughter had or if it was fixable.  She wouldn't tell me a time frame but kept emphasizing that a few of her patients with this particular tumor are still alive.  I once again asked how long my sweet little 2 year old had.  Dr. Bruggers then said that the pattern for this brain tumor is once it is diagnosed and the patient starts radiation and chemotherapy the tumor shrinks and goes into remission for about 6-9 months.  Once the tumor starts growing the second time it doesn't respond to treatment and the patient passes away within a few months.  So from diagnosis to death is about 1 year.  I started crying all over again.  The doctors left to go finish Brylee's MRI.  They took another hour and a half to scan her entire body to make sure there wasn't anymore cancer anywhere.

After the MRI it was a whirlwind of doctors and getting us admitted into Primary Children's hospital.  They didn't even let us go home.  When she woke up from the MRI they had her put on a feeding tube because the tumor has caused her swallow reflex to go away.  She also needed to be put on oxygen because she was having a hard time breathing.  Thursday morning she officially failed her swallow test.  Thursday night they did surgery on her to place a port in her chest, a permanent IV, that accesses a vein in her neck.  She was still on oxygen all day on Thursday.  Thursday they also took xrays of her chest because she was having weird breathing sounds.  Friday morning they took more xrays of her chest and we had our first radiation treatment.  She again was on oxygen all day Friday.  She started to reflux on her feeding tube so they had to advance it into her small intestine.  They did this by strapping her to a board and taking several series of xrays of her stomach while they were threading the cord into her.  Saturday she had her 2nd radiation treatment.  The hospital did a viral test and found out all her breathing issues were due to the fact that she has RSV.  She was still on oxygen but had a pretty lazy day.  Sunday we did another round of radiation and were able to get off the oxygen.  Monday brought more radiation and had to start oxygen again.  She was actually awake most of Monday playing with play dough.  Monday night brought on a bought of roid rage due to a steroid they have her on.  My arms are very bloody and scratched because every time I got near her she freaked out.  Tuesday, today, she had more radiation and more oxygen.

This has been a trial and a blessing so far.  I have learned about so many people that love my daughter and my family.  We are so blessed to have so many amazing people in our lives.  Thank you for all the prayers and love.  We need a miracle!