Jake was more focused today although still unable to talk. He is on anti-convulsant Dilantin to prevent further seizures. He can blink his eyes to indicate his answers so although we know he is still to weak and recovering from the seizures he can communicate. I asked him if he was having headaches and he said yes so we started him on a small amount of morphine to be given when he feels pain. I am hopeful that this will not have to be done continuously because it causes him to go back to sleep and I am not certain that all have said what they would like to say to Jake. Also, I am unclear as to whether Jake wants to continue his fight. He had indicated just before the seizures that he still wanted to fight and I asked him if it was for me or him and he said both. My feelings are mixed, given the seriousness of the disease and Jakes tenacity to survive. The unfortunate reality is that the pain medication will more than likely keep him sedated which will prevent him from eating and directly affect his ability to fight this out however I have to put pain management ahead of everything. Therefore we will hope that the headaches are not continuous so we do not have to keep him sedated and can give him and his friends and family the opportunity to say anything that needs to be said by either Jake or themselves...... I just paused for a moment to check on him during the writing of this blog and I am shocked by the change of having him on the morphine. The indication by the nurse is that he is beginning his transition. I am dissapointed and saddened that it looks like I was unable to stay ahead of the curve of this monsterous disease. If I knew then what I know now, I would have modified my treatment plans but I have no regrets because I always do my honest best and I did do a good job. Unfortunately technology takes time and we are running out of it. I am happy to know that Jake continues to make changes in everyones lives he has touched and will continue to make changes for the better with his attitude and Cytotron. I will be interested to see where we are in 5 years in the battle and proud to know that we took a brave successful stand against it.
At this point, I welcome anyone to leave comments or anything they would like me to tell Jake and I will read it to him.
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5 comments:
Dear Jake and Dan:
We are Pam and Bill Balancio, friends of Bob and Shawn Perkins. I think we met you at their house this past summer--maybe the 4th of July. Any way, we have been keeping up to date on you through this blog and want to thank you for all of the information. I kind of feel like I took a trip to India also.(I play in trivia tournaments on the web each day and one of my toughest opponents is a guy in India. He is incredibly smart and fast as well.)
Maybe you crossed paths with him at some time!
I have told many people about your journey and what a formidable duo you are!!
We want both of you to know that you are in our thoughts and prayers every day. I wish there was something we could do for you. I don't know what it would be but would like to contribute to Jake's well being. We are in contact with the Perkins regularly so please feel free to call on us for anything through them.
God bless both of you on these next steps of your journey. May it be a long and prosperous one.
Peace and Love in 2009.
Pam Balancio
760.438.0630 home
760.519.8966 Pam/cell
760.419.0630 Bill/cell
Dan and Jake,
You don't know me but my prayers have been and continue to be with the both of you. You both continue with such strength, tenacity, and motivation. Jake - you truly are changing technology and people's lives. You are an amazing person and soul. Dan - you're right, you are doing a great job. My prayers and heart are with you.
Kathie Hynes
(Whitney's mom)
Dan,
You are an amazing father! You should never have any regrets because you have fought way beyond what many of us can imagine. Everyone is amazed by your strength and dedication to Jake. I love you.
To Jake:
You are such a beautiful soul, my friend-- I've seen your sincerity and kindness since you were a little guy. You've always been open minded and sensitive to peoples difference which has always inspired me. Keep fighting buddy and know that so many people love you and have you in their prayers everyday. Make sure my Mom and Marsh give you a big hug from me and Whitney. We love you so much!!!
Love,
Kaili & Whitney
Dear Jake -
I am so amazed by your strength and bravery - whenever I'm facing something challenging in my life, I think of you and the battle you are fighting. You are so inspiring and have done so much so far in your battle against this horrific disease. So many people are going to be helped by your strength. My family and I are thinking of you always...Dan and Marci you are awesome, what more can I say?
Hugs and Love,
Betsy
Dan,
You have been an inspiration of selflessness and dedication the whole journey. You have weathered several of the most several life changing events outside of caring for Jake.
When I was young my mother lost a close friend to cancer. A wall decoration from her friend to her shortly before she passed says it all. "The best things in life aren't things"
The courage you and Jake have exhibited should give us all pause to consider what we choose to spend our time and energy on.
Our thoughts continue to be with you and Jake. One day at a time.
GOrth
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