Thursday, February 7, 2013


Driving home from work today I was crabby and bitching to Krackle about how weird my day was and how  it was my first bad day at the new job. We had someone not show up for work which in turn lead to a different person being fired. I stopped on the way home and got a salad and some wine to forget everything.

Then, as reality is known to do, I got slapped in the face. My friend sent me a text message giving me news I hoped I would never have to hear.

In June 2012, her 8 year old daughter was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. It is a rare brain tumor that only affects about 100 kids in both North and South America per year. It is in the Pons region of the brain, which is located in the brain stem, and affects important functions such as breathing and heart beat. Due to the importance of this region of the brain, the tumor is inoperable. 

Her daughter immediately started chemotherapy and radiation. My friend, who is a pediatric nurse, knew the statistics and kept them to herself, silently suffering so as to give her family hope. Privately she prepared herself for the inevitable. 

The tumor has been stable since her diagnosis, a very good sign. Her neurological symptoms considered to be unstable, but overall, she was doing better than expected.

Today they got MRI results back that showed a 25% growth in the tumor. Their family decided to put her in hospice care rather than continue the steroids, radiation, and chemo that were just making her sick and miserable. Nobody knows if she will have days or weeks or months, it all depends on how fast the tumor grows. They have a very long journey ahead of them as they watch their little girl decline.

I am simply asking that you send every positive emotion you can their way. If you pray, pray. If you mediate, meditate. I am not sure what exactly to hope for...a painless, fast end or more time with their precious little girl. 

I would never wish this upon my worst enemy. This little girl has humbled me through her bravery and strength. She insists on going to school and doing all her school work despite not feeling well. She is not ashamed of her hair falling out, only wearing a head band to cover it when going somewhere that is new. She insists on buying her little sister a present every time she gets something because she wants to be fair and she loves her little sister. 

Make a Wish sent them on a Disney Cruise in November and they have taken every second they have free to spend together as a family. Their bravery and love has both warmed my heart and broken it over the past year. 

Hug your loved ones. I know that I will.

1 comment:

monique said...

What a brave little girl she is. Hopefully she can help her family and friends get thru this. It sounds like she can. This is a tragedy for sure.