Monday, July 28, 2008

Owen is having a pretty good day today. He woke up in a great mood, and has been pretty playful when he is not tired from the meds. Even when he is sleepy, he loves to tickle people! Whatever he can do to make others smile...

Friday, July 25, 2008

Hi everyone!
Hope you all had a great Christmas in July-or at least felt that warm feeling in your heart! Ours was wonderful! Owen got a Wizard of Oz ornament that is new this year from Hallmark and loves it! It lights up and plays the little snippet where Dorothy and her pals ring the bell to see the Wizard and the little munchkin greeter says that the bell is out of order etc. He got a few puzzles, some books, and a few toys. Santa came to visit that evening and brought a few more gifts, as well! When we went to the hospital yesterday, they were celebrating Christmas in July there, so he saw Santa there, too! We spoke with Owen's oncologist and had the chance to look at his scans while Owen was getting a platelet transfusion. Things actually didn't look as bad as I had imagined, and with an increase in some of the medication Owen is receiving, he looks a million times better than he did a week ago! I am incredibly thankful that they are able to adjust meds like that and give him some more quality time! I am grateful for every day!
One of the play therapists who comes out to see Owen said that one of her clients wakes up each morning, tears open the curtains and yells happily, "I got another one, mom!" That's how I feel. Owen woke up so happy this morning-alert and playful. Even though I would have loved to sleep in a bit more, I will have the rest of my life to sleep in, and unfortunately, there will be mornings in my future when I will have to wake up without him. His face is the first thing I see when I wake up every morning-I can't imagine not being able to see him, touch him, kiss him, smell him...But for now, I have to focus on the positives-on the here and now, the good moments, his giggle, his voice saying "Wud you", either when I solicit it with an "I love you" first, or when he says it all on his own.
Owen made me a Build a Bear! We bought Patches, which is a bear that, when purchased, $1 of the sale goes to Pediatric Cancer-how could we not buy that bear for me?! It's too cute, and has Owen recorded saying "I love you" on a button in it. He made himself a turtle, and got a Batman costume for it, and cleverly named him "Bat turtle"!
Enjoy the sun, enjoy the rain-enjoy whatever is thrown your way. You may not have control over everything, but you do have control over the way you react to it!

Monday, July 21, 2008

Merry Christmas in July!!!!!!!!!!!

Sans snow, we will celebrate the Christmas holiday on July 22!! We have a tree and stockings up, and will be visited by Santa in the evening.
May everyone feel that warm Christmas feeling in your hearts tomorrow and always, and remember the everlasting gift that presence can give.
Merry Christmas! :-)

Sunday, July 20, 2008

Hello everyone,
Owen had his MRI on Thursday morning. On Thursday evening while Owen was at his fathers house, he became unresponsive and began having small, focal seizures. When we heard the results of the MRI on Friday, we weren't surprised to learn that the tumors that were present at the April scan have all grown, and in addition, there are new tumors.
Owen currently goes in and out of wakefulness. Sometimes when he is awake, he is completely unresponsive, others he is awake, but very slow to respond. There are also times that he is completely the same, happy little Owen that he has been before all of this happened. Yesterday, he had a few hours when he was playing board games and joking around with us. He has been sleeping pretty well overnight, and is being medicated for pain, so he seems to be pretty comfortable.
Owen has fought and fought this past year, and risen above the seemingly impossible. If it took merely spirit and stubbornness to survive, he surely would outlive any of us. Having him here right now to hold, to smell, to kiss, to listen to breathing is such an amazing thing I can't even find words to describe it. Any lucid moments he has are memories we will have for the rest of our lives. Given past experiences with similar diseases, the home care nurse feels that we are looking at somewhere between a week and a month left with him.
I will do my best to keep this updated as I am able to. Keep alive any happy memories you have of Owen. Regardless of how long his body is able to maintain, his spirit will continue to live on through all of us.

Sunday, July 13, 2008

Anthony came home from camp on Friday!!! He really had fun there. He enjoys Camp Good Days-really looks forward to going after his first time last year.
Yesterday, we let all 5 Painted Lady butterflies go! Anthony was surprised that they didn't all fly out right away. We are looking into getting some more caterpillars to watch the cycle again.
Owen has an MRI on Thursday...He has been sleeping alot more the past few days, but has been up already for 3 hours this morning-awake and alert. Man, am I glad to see that.
Look toward the sky today, and wave to our butterflies if you happen to see them!

Sunday, July 6, 2008

Owen and Anthony have been in Florida with their dad since Wednesday. :( I miss them both! Anthony comes home today-he will be flying alone-because he leaves for Camp Good Days for a week tomorrow morning. Owen will be home Tuesday night. I hope they are having fun, and I am glad that they get to spend this time with their dad and his family, but man, do I miss them!
I bought Bugville for the kids. They send caterpillars in a cup with food and a pop up bug tent. The caterpillars built their chrysalis's while they were gone. Anthony will get to see them today. Hopefully Owen will get to see them, although I doubt he would be too upset to come home to butterflies! Hopefully they will still be around when Anthony gets back from camp on Friday.
I am taking summer off this year to spend with the kids. It is needed for all of us I think.
Owen goes in for another MRI on July 17th. Not sure what they are expecting to find. It's not like it will be good news. Even if it does show some shrinkage, the inevitable will still occur by the end of the year, I am sure. We are so lucky to have gotten the time with him as we have-although of course it will never be enough. When we first got the news of the relapse and saw the scans, I think even the doctors didn't think Owen would still be with us and doing well right now. But here he is, smiling, laughing, and acting like nothing is wrong at all. That is how he should be acting. Owen doesn't know he shouldn't be normal, and I think that is helping him live. Someday soon, the tumors will take over his body, and he will have no choice but to succumb to the cancer. But, for now, Owen is the same, strong, amazing little guy he has always been.