Thursday, June 26, 2008

Choosing to live…

We’ve talked to the doctors and they’ve presented the few options that are remaining to us. After long discussions and talking to the Radiologist, David has since decided he won’t be doing the low-dose radiation. It’s a innovative new technology that I think will be instrumental in the coming years with the treatment of brain tumor patients…but unfortunately, I think the tumor is too far progressed to make this treatment viable for us. The doctor felt it was a good idea, but more for research and for future patients. There is little hope it would do much for David’s condition. David decided that he would not spend the remainder of his time, 2-hours a day at the hospital and then hours at home recouping daily from the radiation treatments, if there really was no chance it was going to kill the tumor. David has also chosen not to take the BCNU Drugs either. The Neuro-Oncologist has said the chances of this one slowing the progression of the tumor was only 10%. Which, considering that the tumor has already grown to 2.5 CM, would only prolong the nasty effects that the tumor is beginning to exhibit.

Honestly I’m relieved by his choice. After talking to some of the nurses and therapists, at this stage of the game of David’s tumor, they agreed with his decision. Saying that further treatments could get pretty ugly at this point and the chance of prolonging his life in a way that David could enjoy it was nil. It took a lot of soul searching for David…but he decided to choose life. That may sound strange, but it’s true. He’s chosen to live his life as he always has. Enjoying the moment and creating beautiful memories. And he felt that continuing treatments may have prolonged his life briefly…but he would not have been living. He would have been a slave to the treatments and their side effects. And he wants to live. Relish the moment. Create memories with Alec and I. Live his life. Because it’s not always about how long you live but what you do with the time you are here.

His speech therapist, who we’ve grown quite attached to…and she as well to us. Told us that she thought it was the brave and right thing to do. She treats a lot of GBM patients and she said that she’s seen so many patients pressured by their families and loved ones to continue treatments…and it’s so hard on the patients. But they do it for their loved ones and she said it was horrible to watch.

And that brings me to my next rant. David has had more than one person tell him that he shouldn’t be giving up and that he needs to continue to fight to live. These people are more than lucky that I wasn’t around when they were telling David this, because they would have had to have deal with me then. Because these people are the ones who haven’t really been around in the last 2 years. Haven’t seen the surgeries. Haven’t seen David or the pain he’s been in. Haven’t seen all the things that have been done to his body. Haven’t seen his daily struggles and how he took each day with strength and optimism. And that he’s an amazing warrior that has continued to battle this little bastard in his head. David has chosen to live and enjoy his life. He's not giving up and there is no battle lost here.

It really pisses me off that because they are not ready to let go of David, they want him to continue treatments to make themselves feel better. Maybe keep him in the world a bit longer because they’re not ready to say good bye. But ya know…it’s extremely selfish to tell David that you would rather he do something which may cause him pain, will make him sleep his remaining time away and possibly make him extremely sick…because you’re not ready for this. None of us are. It’s the brutal reality. I’m not ready to say good bye either, but I love David enough to let him live and enjoy every moment he has now. Cherishing each memory. Because someday that will be all that we have. And David and I don’t want to look back at this time and have wasted all those precious moments in further futile treatments, or in fear and regret.


At June 26, 2008 3:56 PM, Anonymous Laura M. said...

You guys are going down the hard road and I am proud of you! It is harder to say no more drugs. It is harder and far from giving up. I can never see David ever giving up. I don't think he even knows what that means! Shame on the people tell him he is giving up!

At June 26, 2008 11:20 PM, Anonymous Jodi said...

Skye, Working in the realm I do, I agree it is harder to stop treatment and redefine hope. Just because you stop active treatment does not mean we need to stop praying for a miracle. Cherish the time the three of you have and the three of you SHOULD be selfish with each other. Treasure each and every moment to the fullest because you deserve this time together. I will do whatever I can with the expertise I have from this aspect forward to help you as I can. I love the 3 of you and always hold you close in my thoughts and prayers!

At June 27, 2008 1:04 PM, Blogger Kyle the Dad said...

I am thinking of your family almost every moment of the day.
David IS continuing to fight and nobody has the right to make either of you feel otherwise. I cannot even put into words how brave the two of you are to make the decisions you have. You deserve the absolute support of EVERYONE around you.
David continues to inspire and amaze us (most certainly me) as he chooses to live!
Anything you need don't be afraid to give me a call.


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