Sing Me a Song

Saturday, February 21st, 2009

Today was not a great day for Jacob. not bad but not great. He is still vomiting and has these horrible pains in his tummy that he just can't quite seem to explain what kind of pain he is feeling. The doctor's don't seem to know what it is either. On monday there is this "big" meeting with many doctors to discuss Jacob. In a way you feel great about the fact that so many doctors are getting together to try and make him better, on the other hand, you wish it wasn't so complicated and a mystery as to why he is still so sick. 

Everyone's goal right now seems to be the same. To try and stabilize him enough to be able to spend some time at home, especially before heading to Montreal. 

Yesterday Jason and I had a very big decision to make. It seems like it was only big for us, many people on the outside didn't see our dilema but i guess you just can't understand until you are faced with the decision. When all this began there was only talk about radiation therapy to the focal area, meaning just where the tumor is. A couple of weeks we are all of a sudden faced with the possibility of having to radiate his entire brain and spine. i was completely against and Jason was in the fence. We didnt' see eye to eye on this and i had no idea how we would come to a decision. The results from the MRI that showed shrinkage was great news and the spinal tap showed degenerated cells. So the question is why would I radiate his entire brain with long term effects if there was no cancer. I know people don't get, i even got responses like "well don't you want him to get better?" and, "don't you want to do whats best for him?" No one out there better EVER doubt the love I have for my son or my intentions to want him better but they are huge decisions to make. We have his life and future in our hands and its a great responsibilty as parents. 

We had a meeting with the doctor yesterday and things are much clearer now. As much as i am against it, the reality is that this is a very rare aggressive tumor and this is the only chance to attack it, we have one chance to get it, if it comes back, we are basically 'screwed'.

So Jacob starts radiation on tuesday to the entire brain and spine. Will we regret our decision? I guess only time will tell.

Jacob had a blah day today. Vomiting and tummy pains and he slept most of the day. He managed to find a bit of energy to take a shower and get his hair washed but that's it. He asked me to sing him a song i used to sing him when he was little, so i sucked back my tears cuddled in bed with him and while daddy held his hand, i sang to him...

Today I am grateful for another day with Jacob. As a grandmother who recently lost her 16 year old grand daughter to cancer said to me this week: Just hug him and kiss him and love him everyday. 

I suggest you all do that. Don't take your children for ganted because the reality is , they may not always be around.