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.

Love,
Debbie

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!!!

"CANCER DOES NOT STOP FOR NIGHT TIME"

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!
Debbie

Happy Birthday Connor!

Connor had wonderful party yesterday afternoon-even if it DID rain on our outside fun we had plannned. Luckily I had planned an indoor activity for the kids as well-so they had a blast making sand bottles with a sand art kit-they turned out beautifully!
Seeing his excitement over all the decorations, cake, presents, food, goody bags, and all the family that helped celebrate with us made it so special. He KNEW for the first time ever that it was HIS birthday and that he is FOUR. I am so blessed with how far he has come these past few years...thank you to everyone who helped make his day so great, we love you all so much!

Time is flying!

The school year is wrapping up, Easter is over, along with spring break for the kiddos...I almost didn't want to post because I find myself repeating the same things-another round of steroids with extremely bad pain for Connor kept us busy, along with a quick trip to Destin during Spring Break which luckily fell in between the pain game Connor gets to play every month.

The big kids were away-so it was just Sam, me and the little ones. Had a very relaxing stay-no crowds like at Disney, lol. Connor got brave and got in the water for the first time EVER at the beach-only to have it ruined by a very mean jellyfish that got hold of his left leg. Poor baby, WHY did it have to happen to him? I wish it had stung me so badly, I don't know if he will get back in the ocean anytime soon, lol.

I don't think I have mentioned that the doctor is reducing Connor's steroids from 12mg per day x three days a month to 8mg a day for those three days...hoping to get some of this pain under control. We will find out soon-he begins another round on Thursday. Next week is Atlanta week, and also a VERY special day is coming up soon! Connor's birthday is on the 26th, he is so excited! I cannot believe my little guy will be 4 years old, I am so thankful for each day with him. He has been doing wonderful with speech therapy and it is showing, his words are coming out a little clearer and FINALLY he is repeating random words after us during conversation.

Here are some pics from our trip! Thanks for all the prayers and Relay for Life support. Look for Connor next month in HER magazine, an article about RFL will be included in the issue. If there is an online link, I'll be sure to post it.

Making faces!

Samantha & Connor in Destin,Florida

In time out for one of the few times I have ever had to resort to it...he knocked over Samantha's sand castle on purpose.

Sand castle fun!

Connor and me, aka my little monkey!

Daddy & Connor, my handsome guys!

I LOVE this shot of Connor-the sun was about to set and he just looks so happy.

My darling girl!

Did I mention Connor is into hats now, lol?

My lovely little sweeties...

Wild ride around here!

Bathtime Fun!

The Big Top Cupcake!

Random colorings by Connor...

Samantha's American Girl Doll in her jammies "aka, hospital jammies according to Connor" He is right though-they DO look like hospital gowns at Scottish Rite, lol!


Seems at the moment we are living from steroid cycle to steroid cycle...one BAD week, then a break, then it all starts all over again. Sorry I am updating so seldom-the only time I can find time to do it is when his pain for the month is over AND the computer is free-no small thing with the twins needing the computer for homework everyday! And even now Samantha has started having some computer homework too, it blows my mind.

This last round was another rough one, for Connor and Mommy. So much pain I ended up bringing in some Motrin to his school to help hold him over through the day until he can get home and take something stronger. He is such a big boy though-even when he is hurting, he is still so good at school! Praise God!

He is excited about his birthday coming up soon (April 26th) That evening we will be at one of the relay rallies for Relay for Life and he will get introduced to all the teams working so hard to make this a successful RFL 2010.

His party will be April 24th, at home of course away from all the germies everywhere else,-he is VERY excited about the theme- Handy Manny! I have to come up with a cake to meet whatever expectations he has in his mind, lol, I hope I can make him proud.

Cannot wait for Spring Break-if his health (and mine) make us able to travel okay, we will be headed to Florida! No definite plans except arrangements for the dog. We like to play it by ear just in case Connor is too sick to go.

We have lost a lot of sweet children this past month to neuroblastoma and also a darling little boy named Reid who had OMS, taken far too soon from his family...please keep these families in your prayers, rough days ahead for them, although heaven is certain to have these angels laughing and playing together!

Happy Easter to all our dear friends,
Debbie

Ahh, the relief!

Connor's grandfather gave him a tube of some "muscle & joint pain relief cream"-you know, the stinky stuff that smells like Ben-Gay, lol. Connor is obsessed with it now! He is carrying it everywhere he goes and it seems to be helping him out some. I just thought it was funny for some reason-I guess since it is being used by a 3 yr. old might have something to do with it?

CLinic went smoothly today. I didn't know wether to be happy or sad that Connor did SO awesome for getting his port accessed...i was happy for him that he laid down and didn't make a fuss, but then another part of me was thinking this is so sad-he has finally truly accepted that this is what he has to do. What a brave little fighter he is, so tough and strong through all the pokes and sticks and the medical tape he hates so much. He even despises putting the numbing cream on before had, it is all cold and icky feeling- but he takes that too! Connor is amazing!

Good report from the doctor, no immediate plans to get off the steroids-fine by me, I am scared beyond wrords of him having no protection for his growing brain. I do believe it will be within the next 6 months that we wean him off...or possibly decrease based on Connor's pain level with them.

Got our check in call with the Make-A-Wish organization! Everything seems on track for Connor to get his wish in the named time frame of 6-12 months. Still not quite sure what he will pick-as he gets older his intersts are changing often...right now he is totally into Handy Manny and is obsessed with "fixing" things all around the house.

Monday we have a little photo shoot set up for Relay For Life, along with little Chloe Shiver, since they are the two chosen honorary children for the event. I'm a little worried about the weather since it is going to be outside, and also worried becasue Connor is having a problem with wind right now touching his head. ?? Strange, I know, lol. So he might end up in a cute hat for the pic, we will see I guess!

Little Layla Grace passed away earlier today...my heart sank when I heard the news, but thank goodness there is no more pain for this sweet two year old baby girl. She suffered from neuroblastoma and her family could use as many prayers as you can send!
www.twitter.com/laylagrace

Thanks for checking on us, with love-
Deb

Been a hard month...

Wow, where do I begin since my last post? The steroid pulses are getting harder and harder on Connor's little body. He had a terrible time this last round with pain-it is so difficult to watch him suffer for days on end...it ends up being a weeek out of every month that he is in severe pain. It starts slowly and builds to a level that is just heartbreaking for me as a mom to see. His legs, his feet, his arms, his jaw-just non-stop pain that begins to taper off when the pulse dose is over.

I kept meaning to make a point to carry pain killer in his Thomas the Train bookbag that we take everywhere...and somehow kept leaving the house without them. Two times the pain was so bad he couldn't even make it till we got home and I eneded up making stops at drugstores to get him dosed up -He managed to not miss any speech appoitments-but had to cut one short,even his therapists could see he was not himself and was in pain...then-as quick as it comes, it is less and less, then gone and we say a big Whew! until the next cycle. The next med cycle is for March 18th, so I am hoping we can get some fun time in and enjoy life for a bit. Oh and I now have the Thomas bag stocked with meds, lol, don't want to keep making emergency stops for pain relief!

Tuesday will be a clinic day-probably get the bloodwork results back on if he is due for more chemotherapy or not...also need to discuss trying to wean off the steroids fairly soon-since it has been two years now on them. After that long, the body starts having many issues from the long term steroid use and especially problems with weakened bones...might need a special scan soon to check how his bones are handling it.

Ryan started his volunteer work last week at the Columbus Museum and Stacy is continuing with her work at the assisted living house. She plays a lot of dominoes and calls BINGO numbers, but surprisingly really seems to be enjoying it! I can't beleive there are only 10 weeks of school left! They also had their birthday and are now officially 15! I cannot believe I have teenagers that old already, the tie has flown!

Samantha went with Daddy to her school's father-daughter dance and had a great time...what a special night for little girls! The molther-son dance was this weekend, which Connor had NO interest in going to-he is still 3 after all and didn't really understand what it was about. He is doing well in school and has come so far since the beginning of the year. I know his busy schedule wears him out though, I think the summer will be good for him to get some down time.

Want to say a big Happy Birthday to my niece and nephew, Erin and Adam, who have birthdays this week! The party was yesterday and I was so much fun! Love you both so very much!

Lots of OMS and Neuroblastoma kids need prayers right now...please remember ALL these little ones fighting so hard!

Love,
Debbie