June 8, 2011

Today was a bit of an emotional day! I was able to talk to two more parents with children with brain stem ganglioglioma.  The internet is truly a blessing at time. Thankful that it helped us connect with parents experiencing or have experienced what we are just starting to go through. Each one of them shared their stories and knowledge about what they have learned about the disease thus far; what treatments have worked and which have not and their struggles. The information was overwhelming, but their stories are serving as a pathway for us.  I was so touched by their willingness to help and lend a helping hand to total strangers.  By talking to these parents, seems that Kass is the oldest with this diagnosis and the fact that she's 15 years old gave them hope.  Little did they know by sharing their stories, they gave us hope.
Sadly one of the parents lost their boy in April of this year; little Matthew had complications with pneumonia which is a side effect from treatments, Matthew was 12. He had 60% of his tumor removed by a doctor in Baltimore and after he was able to walk right out of the hospital (good sign), but later on got pneumonia. His story broke my heart, I could not even imagine what these parents have experienced. Another mom her son is currently 7 years old and a neuro surgeon in St Louis was able to remove 50% of his tumor and as of today Easton's tumor is stable (meaning not growing anymore). His mom said he has returned to school and is swimming and doing karate.  What a cutie! He has experienced some debilitations though from all his treatments.  Bless his heart!
Yesterday I spoke with a parent of a 15 year old girl in Florida, which Kass was so excited about, someone her own age.  Amber has been battling since she was 12 and her tumor is stable, but treatments have really caused some neurological problems and has not been able to return to school. She is doing better now, but everyday is a struggle for her.
All in all Kassidy's symptoms are far less extensive than all these kids, but many similar to those she has experienced like hiccups, headaches, vomiting, and breathing problems. We do feel that comparing the symptoms with the other kiddos, we might have caught Kassidy's tumor early since she is not experienced weakness in her body, passing out, seizures, or even eye problems.  According to the parents though, they don't know of any kid whose tumor was completely removed or shrunk completely.  A stable tumor is what we will strive for then.
Kass today felt better today than any other day since her surgery, only a small headache in the morning.  She drove me to 7-11 for her slurpee fix, then we went to Fresh & Easy and even went with me to get her eyebrows done.  She said they were getting out of control. LOL  Oh yes and when we got home, Ryan, Kyle and I worked on the yard so Kass made dinner for us. We are thankful for the small things......