Connor's Corner

Saturday, May 22, 2010

Almost Done!

I can hardly believe that school is almost out! Ryan and Connor only have one more day, and Stacy and Samantha have two. (the last day is optional at Columbus High because it is cinema day-popcorn and movies) I guess sleeping late and staying home sounded better to Ryan! He is going to go with me to Connor's class lunch which should be fun. We are doing McDonald's happy meals for the last day instead of regular lunches-BIG treat for the little ones!

Tuesday is Awards Day for Samantha. Her grades have been incredible this year! Her teacher told me the other day that Samantha is the ONLY student she has ever had that has made ALL 100's for the year! Not bad, huh? She wants to recommend her for the Glory program next year when she is in 2nd grade. I sure hope we get the teacher I requested for next year, keeping my fingers crossed!

We are trying to plan a beach getaway for sometime in June since the kids leave for the month of July to Washington state. We were trying to narrow down all we want to do before they leave and it looks like just the beach and Callaway Gardens. Movies of course-Toy Story 3 and Eclipse are tops on the list, lol. Connor has never been to the movies before and I think Toy Story 3 might be our first try if he doesn't chicken out. Poor guy is scared so much by new places-not to mention if they are dark and loud. Just too much to deal with for him. Stacy has her community service to do, hope to get her schedule soon. Oh-and the biggie, going to get LEARNER'S PERMITS for Ryan and Stacy (gulp!)That is going to be so much fun for them!

Heard back from Make-A-Wish again for our every 3 month update call! Found out they are mailing out paperwork for me to fill out and send back, along with all of our birth certificates-not sure why for that one, lol. Still no word on WHEN Connor's trip will be-but we are making arrangements for basically anytime since we just don't know.

Sadly-Ryan and Stacy's father in Washington isn't willing to let them share in the trip with us if it comes in July (his usual month with them) Not sure why he would want them to miss out on a once in a lifetime experience, after all they have been through since Connor's diagnosis 3 years ago...that is something I feel very strongly about-a cancer diagnosis-or any serious diagnosis really-affects the WHOLE family. They deserve this trip as much as Connor does. He simply isn't willing to let the kids come for the 4 weeks a little earlier or a little later, depending on IF we get the trip in July. Always about him and never the kids...On the bright side-I doubt it will be in July-so it won't even be an issue, lol!

All the kids are getting very excited about where we should go. We asked Connor after we tried to explain what Make a Wish is where he wanted to go and he said Target!!! We just about fell over laughing-he doesn't understand he can pick anywhere, not just Publix and Target-the only places he really ever gets to go besides the hospital. So funny!

One of my fellow OMS moms that lives in Texas has some exciting news! The television show Mystery Diagnosis is taping an episode on her family and their experience with OMS next week. Needless to say, my OMS online support forum is THRILLED for any chance to spread awareness about this condition since it is so rare. Good Luck Becky!!!

Love to all,

Tuesday, May 18, 2010

"Dancing Ballerina"

Getting ready for Samantha's recital this coming Sunday! She had pics taken over the weekend and the dress rehearsal is this Friday...She looks like a little doll and is SO proud of her dancing she has learned and her beautiful costume. Her group will be dancing to "Edelweiss" from The Sound of Music-Oh how I love that song, I am sure to tear up the moment the music starts. I am so proud of my little girl and her motivation to get to every dance class and work her hardest. Love you Samantha!!!

Relay for Life Night!

Connor with a VERY special friend-my team captain Elizabeth! He calls her "Aunt Graham"

Beautiful balloon release after the 1st survivor's lap!

Our campsite-our theme this year was "Toon Out Cancer" with Scooby-Doo as our character, so cute!

Ryan and Steven relaxing by the fans with their iPods

Connor with his teacher Ms. Giles-thank you for supporting our boy!!!

Mama & Connor (with BIG eyes, lol)

Connor LOVES Ms. Hollis-his other teacher at school, she is an angel!

I thought he'd be able to walk this year, but needed the stroller since his legs were hurting so badly...still handsome as ever!

Steven,Caitlyn,Rio, Stacy, and Whitney cheering Connor on during the survivor lap!

This was a precious shot of Connor and Chloe-both the honorary children for this years RFL event.

Me and my two little ones!

Last Friday we had our 3rd Relay for Life and it was so amazing! Connor did great with his "duties" mostly just being there and leading the survivor and luminary walk with little Chloe-his co-chair for the event. He was on Day 2 of his steroid dose and we expected it might be hard for him with all the walking-so he did end up having to use the stroller for the walks. It was such a moving night!

Who's heart couldn't have been moved hearing the song "Imagine" and then watching Chloe and Connor carry the torch around the track, while the bagpipe player was behind us playing "Amazing Grace"...These two represent so much to so many- Mostly Hope! So little to have gone through so much already...yet still smiling and ready to take on the world.

Thank you so much to my team captain, Elizabeth Graham, for nominating Connor and being keeping us so informed and involved in all the activities. Our tent at Kinnett Stadium was so cute! Connor and all the kids love it-even Ryan who is a HUGE Scooby-Doo fan! Samantha had her face painted, jumped in the jumpee, and enjoyed cotton candy while Stacy had a ball walking ALL her laps with her friends. Connor did have some cotton candy-but seemed to be most excited just to be there. It was like he knew it was something BIG-something that meant something, although he cannot comprehend exactly what yet. He thought it was all a big party for him, and in a way it was-for us anyway. We are beyond blessed that he is doing so well and pray every day for his OMS to stay far, far, away!

Thank you to all who donated to me on behalf of Connor. Wish I had pics to share of the two little ones carrying the torch during the luminary ceremony-but it was too dark, lol. But will ALWAYS be special to me, and I believe all who were there to see these tiny children representing HOPE so very well.


Wednesday, May 12, 2010

Just wanted to let everyone know about RFL this coming Friday night!

Relay for Life is 2 days away! Come to Kinnett Stadium this Friday and support our Connor and sweet Chloe Shiver-they are leading the survivor walk as honorary children for the event...Look for us in the Scooby-Doo RFL shirts and my team is on the hill next to the restrooms, lol. Hope to see lots of friends!

This is from the RFL of Cobb County and it is a very good explanation of what RFL is about and what it symbolizes...worth reading!!!


RELAY FOR LIFE starts at dusk and ends at the next day’s morning. The night and darkness of the day and night parallel the physical effects, emotion, and mental state of a cancer patient while undergoing treatment.

The RELAY begins when the sun is setting. This symbolizes the time that the person has been diagnosed as having cancer. The day is getting darker and this represents the cancer patient’s state of mind as they feel that their life is coming to an end.

As the evening goes on it gets colder and darker, just as the emotions of the cancer patient do. Around 1 a.m. to 2 a.m. represents the time when the cancer patient starts treatment. They become exhausted, some sick, not wanting to go on, possibly wanting to give up. As a participant, you have been walking and feel much the same way. You are tired, want to sleep, maybe even want to go home, but you cannot stop or give up.

Around 4 a.m. to 5 a.m. symbolizes the coming of the end of treatment for the cancer patient. Once again they are tired, but they know they will make it.

The sun rising represents the end of treatment for the cancer patient. They see the light at the end of the tunnel and know that life will go on. The morning light brings on a new day full of life and excitement for new beginnings for the cancer patient. As a participant, you will feel the brightness of the morning and know that the end of the RELAY is close at hand.

When you leave the RELAY, think of the cancer patient leaving their last treatment. Just as you are exhausted and weak, so is that person after treatment.

REMEMBER: There is no finish line until we find a cure!

We had clinic today and it went smoothly. We are going to lower Connor's steroid dose once again-now to 6mg a day for 3 days per month (these are called pulse doses) This is HALF the amount he was taking-so I am hopeful he will remain OMS symptom-free and not have too much pain this round. PRAY!

He is doing great-talking a lot! Amazing everyone with his thinking skills as well. I still serve as "translator" most of the time.

Today his doctor had lots of bumps and bruises covering his hands and arms...when he told Connor he fell off a bike-Connor was FULL of questions for him, lol. Was he outside? Was he on a hill? It was wonderful to see him thinking it through and understanding how ordinary things work!

Love to all!

*Our Family*


"Connor's 3rd Birthday in Pics"

Before OMS Onset....

Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...

"Holiday Slideshow 2008"

"A Year In Pictures-2008"

Slideshow Stacy Made!

Connor's 2nd Birthday April 2008

Halloween 2006

Connor George Khoury

Connor George Khoury