Circus on Saturday!

Last night, after the kids were dropped off, Owen was sitting next to me on the couch, snuggling with me like he does every night. Then he starts to giggle and hug me and sing, "I'm never gonna let you go, I'm gonna hold you in my arms forever!" over and over again! This is a song I have often sung to him this past year, and I'll tell you what, hearing him sing it back to me is absolutely wonderful! Most beautiful song I have ever heard!!
We are going to the circus on Saturday, and Owen is so very excited! He is looking forward to the clowns most of all-they make him giggle!! One night before Christmas, we were leaving Children's hospital and were waiting to go out into the blustering cold when off of the elevator walked a clown. He must have been tired from going to different floors and rooms, but he stopped and did a show for Owen. That was the first time I had heard Owen laugh like that in I honestly don't know how long. There is nothing that I love to hear more than the laughter of my children!
May this day bring laughter and happiness to everyone!
Jen

To Owen's Future Spouse....

Someday, my sweet little son will make someone such a happy spouse! He was in the bathroom with me during the morning routine, and I was putting on my glycolic acid peel. He was watching me and said, "What are you doing, mom?" I answered, "Putting chemicals on my face so I look younger." Owen put his hand on my leg and said, "You don't need to look younger, mom. You're beautiful just the way you are!"
That kid! He sure is a sweet one!
The other recent story I have about his sweetness happened a few months ago, but is still a good one. Owen was laying across me in bed one morning, and I was feeling particularly emotional that day (it happens to the best of us-we cannot pretend to be happy ALL of the time!) Owen had his head turned because he was watching television, but he said, "I love you, Mom." Being in the highly emotional state I was in, I started to cry because I was so touched. (He does that alot, mind you, saying "I love you" out of the blue, but I usually don't respond by crying!) He turned and looked at me, put his hand on my face and said, "No tears, Mommy. I love you. No tears..." and hugged and kissed me.
As stated in my television interview, gum and all, how could you not wake up happy to that? We are so very lucky to have him in our lives!
Owen has been chosen to be Women and Children's Hospital Child Champion of the Year-2008. He is so incredibly inspiring, I am so happy that he was chosen. I hope that other children (and adults) are able to take a look at Owen and see his amazing spirit, ability to smile and desire to care for others and realize that they can get through whatever difficulties they are enduring. He truly represents all children, not only those suffering from cancer, but every child who is experiencing difficult times. I hope that seeing his face will help raise awareness not only for childhood cancer (which I really hope it does), but all of the wonderful things Women & Children's Hospital in Buffalo does for children and their families. Each and every person we have met throughout our journey -- doctors, nurses, aides, cleaning staff, patients, other families, volunteers --people we don’t even know who have rallied around us, helped to fundraise for medical expenses. People have come up to us to share their heartbreaking stories-offering us the knowledge that their child was watching and protecting our little Owen from heaven--every single person we have met has been truly amazing. I have yet to write his story-we are quickly approaching the one year mark. I have not yet found the courage to do so, but I will.
Take the time to reach out today. Help someone in need-whether it be something as simple as a smile, or to actually gather some food and bring it to the floors of the hospitals for the parents who are there with their child and are not able to leave their childs side to get something to eat...there are so many things you can do to truly make a difference in someone's life. What are you waiting for? Make a difference-all it takes is one person, why can't that person be you?
Love
Jen

So Fun!

Last night was sooo much fun! The kids had a great time running around and playing, and it was great to have some adult time, as well! Here is a link to information on the benefit friends and family are having to help the family with the expenses of a surgery he will be having performed in April...
http://www.akronfireco.com/JacobFlyer.pdf
Owen is off of the TPN!! That is good news for the washing machine and dryer, because MAN he would certainly have some overflow on nights he was hooked up! I swear, the laundry breeds when you have kids anyway. Hopefully Owen will continue to eat and drink well! He is with his dad tonight-all of the boys are...I really miss them :-( They will be home tomorrow afternoon though-but I really do miss them soo much when they are gone!
Hope everyone has a restful day!
Jen

Movie Night!!

I signed the consent forms yesterday for the Accutane, so Owen will most likely begin that before the end of next week. His oncologist said that the current protocol is to keep him on it for 6 months (2 weeks on, 2 weeks off), but that if he tolerates it well, she will keep him on it longer. It can only help...
Tonight we are going over to a new friend's house! We are so excited! Diagonally across the street from us, an adorable little boy, Jacob, who has cerebral palsy lives with his awesome parents and cute younger sister. I stopped over to introduce ourselves the other day and ended up staying for two hours! (Those of you who know me well know very well how that could happen!! It's not like I don't LOVE to talk!) His parents invited all of us back tonight for movies, popcorn, and milkshakes!! I am so happy that there is someone close by who has a child who is Owen's age who he will be able to play with! They both wear AFO's, too!!
Last Friday, we took Anthony and Owen to go see The Spiderwick Chronicles at the Imax theater. It was really pretty well done, and very exciting-definately kept the interest of all of us throughout! Looks like Friday is becoming designated movie night!
Hope everyone enjoys their evening and remains unburied from the big snowstorm we are supposed to have!
Jen

April Anxieties

AHH! Ok, Owen's next scan is April 15, a year to the day when he was admitted to the hospital and our lives changed forever. I am losing sleep thinking about the very real possibility that it could show regrowth. I have to accept each and every day as a gift-I realize that we could have lost him last year on several occasions, and I should be thankful for the time I have with him. But my god, what human being would not be concerned about what the future holds for him? If one of his scans comes back with regrowth, Owen will be hospitalized for about a month and endure heavy duty chemo and would need a bone marrow transplant. We were told that if the cancer comes back, that the likelihood of it being cured is very minimal. Think of it like the superbugs that are created by doctors excessively prescribing antibiotics-it is kind of like that. The cancer cells have already seen the chemo drugs, so are more resistant to them-they are prepared to fight back, where the chemo took them by suprise the first time. How does a parent deal with that? How could a parent ever go on after losing a child? My god, I hope I never have to find out...

Standing and WALKING!

Check this out! Owen is not only standing, but with the support of his AFO's and new shoes, if someone is holding his hands Owen is able to WALK for the very first time since surgery last April 19!! It is completely amazing and unbelievable to see! I never expected to see this, especially so soon-I thought it would take months before he would even be close! I am so proud and excited! What an awesome thing!

See Owen on TV!

Here are the links to the news story and video on Owen and the very generous Coach Sil Dan! (Please remind me that if I am ever going to be interviewed on camera again to remove the gum from my mouth!! How embarrassing!)

http://www.wgrz.com/news/news_article.aspx?storyid=54986

http://www.wgrz.com/video/vplayer.aspx?sid=54986&aid=39725

Accutane

Dr. Fitzpatrick said we will begin talking about starting Owen on the Accutane therapy soon! For anyone who is unaware (as I was!) Accutane, a prescription drug which is used to treat severe acne, is now experimentally being used in some cancer treatments. It has been shown to cause the cancer cells to mature (thus die) at an accelerated rate, and does not attack healthy cells as chemotherapy does. He will need to wear sunscreen and protective clothing while he is on the Accutane therapy whenever he is outside, even just walking from the house to the car...It will make his skin extremely dry and itchy. What choice do we have but to do this, though? Yes, it will make him uncomfortable, but nothing like he was while he was on chemo, and if this prevents the cancer from coming back it will all be worth it.
His next MRI is in April-the one year anniversary of the diagnosis. I am nervous as hell-who wouldn't be? Every single time he goes in (every 3 months right for a year, then every 6 months after that) I hold my breath until we get the clear. Torture...I wonder if I will ever be able to relax at all...
Anyhow-hope everyone has a great day and someone to love and hug!
Jen