Sunday, April 5, 2009

Good evening. I am finally getting on the 'puter to update.

First off; Vicki, I totally understood what you meant, and you are absolutely correct! Having our surgeon looking into the future is wonderful. When David was diagnosed, our surgeon didn't give him much chance of survival. So to be planning for a future event; even just a few years; is very encouraging to us. Let me tell you; after all David has been through, we will take any positive news we can get; and run with it!!

And I am so sorry I have to put the security up sometimes. I can't tell you how tired I am of being criticized. I feel like if you don't like what I write here, DON'T READ IT!! But don't read it and then criticize me. I have been criticized for just about everything; including the fact that I put the bank account up for donations to help us pay for expenses (which are through the roof, by the way). But I know that most of the criticism comes from people who don't 'get it' and won't even try. They don't care enough to really know us. Although, I have been criticized by people who know us, too. Oh well. Like I said before, the people you think are going to be there for you are the ones who 'can't be bothered' with your problems. Please don't misunderstand; or think I misunderstand; I know how it is. I hear 'through the grapevine' how much my family and I are condemned for the things we do; and for the ways we support David. But I don't care anymore. I try to build bridges to 'repair' relationships, then the other side tears them down. Ok, that is fine. I am done. I have enough on my plate to be concerned with what others think of me and my family. Please continue to pray for us. This is such 'hell on earth' and we need people to support us, not criticize us. To those of you who are there for us, you have no idea how much we appreciate it. Thank you, all of you. Our osteo family knows what I am talking about~~~some of them are going through the same struggles. It is interesting to me that some of the CB sites I read could have been written by me! *sigh* Some people just love to 'kick you when you are down' and don't see a problem with that. Such is life.

I had a conversation with another member of our osteo family today, and she voiced a question that haunts all of us parents of a child with cancer. When do we decide enough is enough? The bottom line to me is I want to know I have done all I can do to save David's life. I want to have no regrets. I have enough already (sadly, one of my biggest regrets is in telling some people about David~~~I really wish I hadn't). I want to know, beyond a shadow of a doubt, that we did all we could. If, God forbid, he should die, I don't want any "what if's" to cloud my memories of him. Of course, we are praying that we are never in that position; but we know it is a very real possibility. Please continue to pray that we are never in the position to have to think the unthinkable. I must explain something. I do NOT dwell on that possibility. I, as I told my friend, just don't want to be 'blindsided' by the unthinkable happening; again! We live each day to the fullest, but it is always in the back of my mind. A year ago we lived from chemo to chemo; now we live from scan to scan. Things could change at any time, and we know that. We do NOT live in fear of the cancer; but we know the possibility of it coming back is always there.

David had a good day today. We went to church this morning. Then Jeremy and Lucy came over, and Jeremy brought over a game to play with David. It was great that my boys spent the afternoon playing a video game together. Something 'normal' in David's life.

Tomorrow is PT again for David. Of course, he is NOT looking forward to that. He has had 4 days off, and he doesn't want to go back; crazy kid. He knows he needs to go; and he knows it helps him; but he still doesn't want to go. But, again, the trooper that he is, he goes and he works hard. I can't say enough how proud of him I am, and how proud I am to be his mom!!! If you get tired of hearing that, too bad! Hee-hee.

Thank you for visiting David. Thank you for all the encouragement and jokes! Keep coming back. Thank you for all your prayers and your love. God bless you all. We love you.

Kristi and the Koury Klan

Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.