Wednesday, September 14, 2011

Today has been a rough day for me as I have had to say goodbye to the happiest kid in the world and say hello the the chemo induced vomiting and grumpiness.  You can definitely tell that there is chemo flowing through Skylers body right now.  He has been really whiny today and is really sick tonight.  I know he hates that he is grumpy but he just cant help it right now because he feels awful.  I was really dreading this and was hoping it wouldn't happen but the chemo is helping keep the bad guys away so I cant be too mad at it.  Right now Im sitting with him in his bed while he holds his "barf cup" up to his face.  He is saying "Im just so mad mommy, I dont like this"  It breaks my heart.  This day is definitely an I HATE CANCER DAY.

 Sick little boy tonight.  We dont have barf buckets anymore so he uses plastic cups that way we can just throw it away when he is done instead of washing out the bucket.

He got sick of holding it so he just stuck it to his face.  Kinda funny yet sad at the same time.

I know this is Childhood Cancer Awareness Month and I will continue until the day that I die to try and raise awareness and find a cure for childhood cancer, but yesterday I learned about a 14 year old girl that is trying to raise awareness for Mitochondrial disease, a disease which her 2 year old brother is battling.  When I read this email I was touched because I know how devastating this disease can be because my friends little girl actually passed away this year from it.  I was so privileged to meet this little girl when she came up to visit Skyler when he was in ICS.  I immediately fell in love with sweet Maggie and was devastated to learn of her death.  Mito is a progressive disease and just like childhood cancer it doesnt have a cure, it also takes lives of sweet innocent little children like cancer does. It is not rare, but is rarely heard of.  I was so touched by this 14 year old girl named Delaney and what she is doing for her brother.  I can relate to the helplessness she must be feeling because I have felt it when watching Skyler suffer and know that there was nothing I could do to make him better and to take away his pain.  She has started a Face Book page to raise awareness and is trying to get people to like her page and to learn about Mito.  

If you are on FB you can visit her page here Http://

Also here is a picture of sweet Maggie who was taken from this earth and her mothers arms far too early from this disease.


Susi said...

i have never heard of that disease. what a precious little girl and her sister too. Thanks for sharing about that. Sorry Skyler is feeling yucky. I absolutely loved that quote about children with cancer.. so beautiful.

shawna said...

Thank you so much for posting this. I know it will mean so much to Delaney. We pray often for Skyler.