So Alex finally was able to pee about 3p today. It was after 3 attempts and a failed catheterising. There seems to be a problem with his foreskin which gave us hope for a little bit but that was soon smashed and broken into many pieces. Steve and I decided yesterday that we wanted to talk to Dr. Foreman about his policy of providing information on an as needed basis. We expressed our irksomeness at Alex's lack of progress and this latest "surprising" development that the staff says they have known about for a while. Well, then why weren't we told about this bladder issue earlier?
His response to our concerns was that he would have to give us a list of possibilities that are most likely not to occur and in his experience it is better to do things this way because usually bladders heal themselves after radiation, etc.
So here is the spiel that really sets the stage for the future. Dr. Foreman says that 70% of post radiation, brainstem tumor children show improved quality of life at this point. That means 30% don't. Alex is definitely in that 30%. Regardless of the quality of life issue, 80% of patients with this type of tumor (remember, Alex's is not typical) will regress between 9 and 11 months post radiation (that's early spring 2008 for Alex). Once symptoms return they return with a vengenance and usually within six weeks the child is deceased. So the remaining 20%, (we did not go further than this point) I assume get to that 2-3 year milestone and if they survive that then prognosis is good.
Since Alex's tumor is not typical and Dr. Foreman is not God, no one knows what will happen, but those are the stats. Dr. Foreman thinks Alex's quality of life is as good as it will ever get at this point (or very near to it). He talked to us about what would improve Alex's happiness at this point. We talked about things like an electric wheelchair and going to school as long as it is enjoyable for Alex.
I am still at the hospital. I went home earlier to shower and returned for our meeting. Steve has taken a dinner break with a friend and will return shortly with Mac Grill for Alexander. At that time, ZG and I will head home and start our evening routine. Hopefully some girlfriends are expected to meet me at the house. I plan on drinking some wine and hopefully (or not) feeling this. I am in shock I think. I just want this to stop and to hear some good news.
This is so bad. How do you stay positive at this point? How do you prepare? What do you prepare for? AUGHHHH!! MAKE IT STOP, PLEASE! THIS IS NOT FAIR, DAMN IT!!!!!!!
GB, G.
Subscribe to:
Post Comments (Atom)
Posts
8 comments:
Argh!!!!
Damn it is right!
Please let me know when I can come visit.
Thinking about and praying for you all!
Heather
Frak.
You're absolutely right that this isn't fair. Melinda and I both felt and blogged those exact same words after conversations with Foreman. From other parents that we've spoken with, there aren't many doctors that are as open and forthcoming as he is. It really sucks in some ways, but it also allows you to really to focus.
As far as your last question goes - how do you prepare for the possibility of the death of your child? I had a really hard time with that until my brother set me straight. You just do what you've always done for Alex. You prepared to be parents before he was born; you've changed hundreds of diapers; spent countless hours caring for him; and you've fought his cancer with every ounce of strength. Everything that you've done has been to keep him safe and feeling loved. None of that changes. Not now and not ever.
Please take advantage of the people supporting you. Drop as many things as possible and focus on each other, on Alex and on Zoe.
We love you guys and will continue to pray for Alex, and each of you. We are so sorry this is happening and wish there was something we could do.
Susan Aldridge
No parent should have to think about the things you are forced to think about--it really isn't fair. Dean Steadman gave some terrific advice; I really like what he had to say about continuing to do all the things that you've always done for your child. As always, positive healing thoughts are being sent your way, although I wish there was something more we could all do to make this go away.
~Annie
You are in my thoughts my dear Kasnoffs. Thank you for sharing your journey with strangers like myself, and I wish there was something more that I could do than that.
Hugs from a stranger
Shantell
I am crying with you! It just isn't fair...we love you all. Let us know what we can do.
love, Jo-Nell
Gwen, Steve, Alex, and Zoe,
Just like everyone else commenting here, I am crying with you and sending positive, healing thoughts to you all.
We all care so much and wish like hell we could take away this pain.
-Merri Ann
My heart aches for all of you. It isn't fair - you are right about that! I was just looking at the P Terra pic from 2 years ago (Ms Mary) and enjoying Alex's smiling, beaming face. I still remember his smile as an infant, lighting up the room! He's a treasure! I wish I could support you more from afar, but know that you are in my thoughts all the time, and I'm hoping for miracles. Hugs, Karlyn
Post a Comment