So all this bad news, it gets me thinking. Are we doing enough stuff with Max? Are we as a family putting forth the extra effort to do lots of great stuff together while we are all here relatively healthy and able? I don't want to remember this time in our lives as a time of "great sickness" and hospital stays and blood draws and chemo treatments. I'd like to have better memories that over power those. Like lots of trips to the zoo, sea world, train museum, disney, things the kids love and that we love when see it through their eyes. Riding an elevator up and down for no other reason than it's fun.
Gonna make it all happen.
Monday, March 19, 2007
Sunday, March 18, 2007
Money is what is boils down to.
Did you know that not too long ago if your child were diagnosed with leukemia they had only a 15% chance of survival? Now, with all the money that has spilled into leukemia research 85% of the children survive. Somewhere along the course of time someone got fed up and started raising research funds for leukemia and look what happened. Good things.
The same thing can happen for NB. It just takes a lot of money.
The same thing can happen for NB. It just takes a lot of money.
Too Much Information for me to handle
On Friday we (Andy & I) had the opportunity to attend an NB conference. The little bit of knowledge that I gained there (most of the speakers had very scientific presentations) has left me very drained emotionally.
Apparently we are so far away from finding a cure for this disease (especially once your child has recurred) that as parents we can only hope that the decisions we make now for Max will prolong his life and give him quality of life in hopes that a cure may be found before his time is up.
The conference was opened by our friend and fellow NB parent Niel Hutchinson who reminded the doctors and scientists there that there is a face to this disease and it's our kids. He choked up as he spoke to them about the urgency in which we need better treatments and a cure and that we (the parents) are "taking the steps to meet them in the middle of the dance floor." I realize now how important it is for parents to be at these conferences, to remind the doctors that this is about people not just about teeny, tiny cells in a dish. And of the urgency.
I met a family there, the Birrell's from Canada - Sid, Pam, Rebecca and Ben - who lost their son and brother, James, to NB in 2001. Sid wrote email updates to everyone that he eventually published as a book. I read it on the way home from VT. It scared the crap out of me to learn how fast this disease took his son, James. It also reminded me that we have to live each day to its fullest as a family and fit in all the fun we can now. The book is called "Ya can't let cancer ruin your day" and I invite you to read it because the book isn't just about the Birrell family it's about the Mikulak family and every other family fighting this battle. It will make you cry.
The conference was closed by Sid who had put together a slide show of his family during James' battle - that slide show was us. I cried and so did every other parent there.
I'm completely frazzled now (and unable to come up with a better description of myself). I'm angry, sad, depressed, lost. There is so much more I want to say but I'm too tired.
Apparently we are so far away from finding a cure for this disease (especially once your child has recurred) that as parents we can only hope that the decisions we make now for Max will prolong his life and give him quality of life in hopes that a cure may be found before his time is up.
The conference was opened by our friend and fellow NB parent Niel Hutchinson who reminded the doctors and scientists there that there is a face to this disease and it's our kids. He choked up as he spoke to them about the urgency in which we need better treatments and a cure and that we (the parents) are "taking the steps to meet them in the middle of the dance floor." I realize now how important it is for parents to be at these conferences, to remind the doctors that this is about people not just about teeny, tiny cells in a dish. And of the urgency.
I met a family there, the Birrell's from Canada - Sid, Pam, Rebecca and Ben - who lost their son and brother, James, to NB in 2001. Sid wrote email updates to everyone that he eventually published as a book. I read it on the way home from VT. It scared the crap out of me to learn how fast this disease took his son, James. It also reminded me that we have to live each day to its fullest as a family and fit in all the fun we can now. The book is called "Ya can't let cancer ruin your day" and I invite you to read it because the book isn't just about the Birrell family it's about the Mikulak family and every other family fighting this battle. It will make you cry.
The conference was closed by Sid who had put together a slide show of his family during James' battle - that slide show was us. I cried and so did every other parent there.
I'm completely frazzled now (and unable to come up with a better description of myself). I'm angry, sad, depressed, lost. There is so much more I want to say but I'm too tired.
Max is too thin
Ok, so here we are at home, just back form Vermont where Max had a minor battle with the flu (like he can stand to lose weight or something). He hasn't eaten for about five days, nor have we been able to give him any of his medications because he either threw-up or everything went straight through him. Andy and I are at our wits end trying to figure out how to make him eat. So we just got mad at him. Told him to eat the damn chicken nuggets or spaghetti-o's OR ELSE. He's crying, gagging on the one nugget we're making him eat when he just throws up... throws up everything he had eaten and drank all evening.
Yeah, we feel like shit. Nice going you #@%! idiots.
So tomorrow I'm talking to his oncologist about getting him a feeding tube until we can find a way to make food appealing to him.
This whole thing sucks.
Yeah, we feel like shit. Nice going you #@%! idiots.
So tomorrow I'm talking to his oncologist about getting him a feeding tube until we can find a way to make food appealing to him.
This whole thing sucks.
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