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November 11, 2004 – July 27, 2014

Diagnosed: September 12, 2013

Written by Tara Braendel Durian, Mom of an amazing angel

Jax Stone 2 Jax was born on 11/11/04.  He was a fun loving wonderful boy.  He was very outgoing and loved talking to everyone and anyone.  Everyone that met him loved him.  He had a great love for video games that he played on his DS, Ipad, and WII.  All Mario games and Plants Vs Zombies were a few of his favorites. 

Jax had just started his 3rd grade year at Tracy School in Erie, Pa.  He all of a sudden was not so outgoing, he was having nightmares and bad thoughts, his balance was off, and his speech was slurred.  There was nothing to prepare us for what was to come!  We took him to the local hospital.  They did a CAT scan but found nothing and referred us to our family doctor the next day.  We were sent back for a MRI on 9/12/13. We waited and then the Dr called to tell us they found a tumor on the base of Jax’s brain stem.  I was scared, but still had no idea how bad things were going to get.  We were sent to Children’s Hospital of Pittsburgh that evening. 

They sent in doctor after doctor as we explained his symptoms repeatedly not knowing they already knew what was wrong with him.  I stayed hopeful even when she sat us down and said that Jax had brain cancer.  I thought to myself “Ok, no big deal.”  Well it was a big deal, but I figured he would have surgery, be treated, and get better.  Then there was the moment she said there was nothing they could do but prolong his life with treatment.  “We just found out he had brain cancer, and now I am being told there is nothing that can be done?  How is this possible?!? I honestly felt like I was on another planet.  I was so in shock and in disbelief!  She was telling me on average my son had 9 months to live??  I still can’t believe it to this day!  It was one of many horrific days through this journey. 

Jax Stone3

Jax was so strong, courageous, selfless, and loving.  He just wanted everyone else to be ok!  I could not be more proud of my son and how he handled this horrible disease!  He is and forever will be my hero!!  Jax endured 6 weeks of radiation, he did a trial chemo pill, he was on a strict diet (Budwig) that I believe helped a bit, he endured 3 more weeks of radiation, and as the doctors said and I could never bring myself to believe he passed away on 7/27/14.  We made a lot of wonderful memories during those months, but those months were not easy.  They were not easy on Jax and they were not easy on us! As we sat watching him lose all of his functions it was so heartbreaking!  He starting losing the use of his right arm and leg right away which eventually led to a wheelchair, he had double vision and would have to wear an eye patch at times, he suffered from headaches, he lost the function of the left side of his face in February, and the last few months he could not walk at all or even sit up.  It was so sad. 

We did everything we could do to make him comfortable!  Like I said before he hardly complained at all which is unbelievable with what he was facing!  We did not tell him what his future held, but I think he knew.  I miss him so much!  The day they told me my son was going to die was unexplainable!  It is without a doubt a parent’s worst nightmare!  I thought to myself that my life will be forever ruined!  My son will not be here!  Like I said I couldn’t let myself believe it during treatment.  Never give up and keep fighting!  Unfortunately not all kids have a chance at this point, but I am really hoping that someday they will because living without 1 of your children is so wrong, so unfair, it really is not how life should be lived!  But at this point I don’t have a choice or say in the matter.  I know Jax wants us to do our best to be happy and strong just like he did when he was here.  It’s not easy!  Everyday is a challenge, but we get through somehow…

Jax left behind an older sister Jordan 15 and a baby brother Colton that is now 3.  I do my best to be ok for them.  They deserve that and I won’t let Jax down!  He was the best!  He has taught me the meaning of giving and feeling good about it.  I enjoy helping others more now because of him!  Thank you Jax for making me a better person!  I love you buddy! Xoxoxo!

Learn More about Jax on Facebook.

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

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