Papers, Papers, and even MORE papers...

Our house is a bit turned upside down at the moment, it is time for the review on what services Connor qualifies to receive through the state since our insurance will not pay for certain things he NEEDS (like speech therapy) Battling the insurance is a gut-wrenching and time consuming task we parents of ill children are all to familiar with-being put on hold a lot, sent to mailboxes that are full and no message can be left on them, oh the fun! Lots of ??? from them that involve the word "WHY"? Why does he need this $5000.00 infusion every 3 weeks? Why does he need these medications every month Why does he require all this speech therapy? Well, it happens to be because although he IS speaking now the words are unintelligible to 99.9% of people he talks to. And on and on...right now is the "gathering process" I have to get ALL of his EOB's together (explanation of benefits) from the past year, which is around 76 or so for all the different infusions and procedures...then EVERY therapy note taken this past year-which adds up quickly since he goes two times a week. Also his IEP from school, his latest evaluation testings from the speech therapist, etc... It ends up being hundreds and hundreds of papers to send off to fall into the hands of hopefully a compassionate soul out there in the world that gets to decide WHO gets the help and WHO doesn't...It hasn't really helped us that much with the medical bills for Connor-but it has been a godsend for the therapy bills! So please keep praying on this with us!!!

Rough week this week, Connor is bloated and in pain, but sleeping soundly at the moment. He even still felt up to riding his bike this evening which surprised us all! Still weaning and right now it seems the steroids are winning the battle-but we will keep trying even if is not quite at the pace we had hoped. I do have to admit I LONG for the day I will be able to take him outside our house and not worry about EVERY single germ that might come in contact with him...Raising an immune-suppressed is just so hard with so many UNKNOWNS lurking all around you. Does that person have allergies or or a contagiouis cold? And on and on, etc...you get the idea.

Planning on going to the Georgia Aquarium at the end of the week!!! So excited-havent been there since I was pregnant with Connor and Samantha was only three and the twins were only 11. I hope C does okay with his fears he has about places like this (pray) :-)

We are at the THREE year point in our journey through childhood cancer and OMS. I have learned a lot along the way-learned of so many special kids that have gone on to heaven too soon...I have learned to fight for my son and the school system to get him the help he needs. I guess you could say I have leaned a lot of good and a lot of bad...but what sticks out the most is just the LOVE. From strangers, from friends, from doctors and nurses, from little cousins who don't understand but still are quick to give hugs to Connor on a bad day...Love from a big brother ang big sisters to their little brother, whose whole world is about them! Thanks to them he has as close to "normal" a life as possible-who better than siblings to still treat you normal-they chase you and tickle you , teach you how to do things and love you no matter what.

Three years in, and still fighting everyday to add to that number!

Summer is here!

Stacy & Samantha after the dance show

Samantha & her friend Olivia with their pretty flowers

Connor on his favorite thing in the world-his new bike!

Samantha & Connor about to go for a ride

Connor proudly wearing his medal on the last day of school

Cousin Adam stole Connor's hat! Silly boy!

Last day of school pic of Connor's class


Been busy around here...Connor got a new bike with his birthday money from his grandpa and he is loving it as you can tell by the new pics. Almost every evening Sam has taken the kids out and it is so funny to watch them! He calls Connor "too fast" since he races along, lol. Samantha is improving, but seems to be taking after her older brother and sister with coordination...let's just say it isn't coming naturally-but she does have the desire to ride that they never had.

Samantha is having fun this week at vacation bible school. Especially since her best friend Kate is there with her :-) getting her out of bed hasn't been fun though! Speaking of which-Stacy &Ryan have been loving the sleeping in, I don't mind since the whole school year they were up at the crack of dawn in time to catch the bus, lol. Stacy starts her volunteer work next Monday-she will be at the assisted living apartments again. I think she missed her new friends there as much as they missed her. Haven't seen much studying for the driving permits yet, I told them I'm taking them at the end of the month and it is up to them to ready. Hard in the summer though when there are much more exciting things to be doing! Havent decided when they will take classes for the driving instruction-it is SO expensive, much less for two at the same time! Definitely want to do it AS they are learning. I admit I am twice as scared at the thought of both of them driving, guess it is hard for all parents-but especially when someone you know loses their child as a co-worker of Sam's did this past week. Only 16 years old! Please keep our friend Linda in your prayers who has suffered this terrible loss.

Happy birthday to my nephew Kevin! Today he is 15 years old...we love you Kevin, you are such a smart and lovin son, brother, cousin, nephew, grandson, and friend to all of us who know you.

Connor had a hard time last month with the steroid weaning. Not unexpected, but still scary to see him relapsing with his OMS symptoms. Thankfully an extra dose of meeds got him through and back to himself. Just not sure how to continue the wean at this point without encountering any more damage than he already has. Good news from the speech therapist on his recent evaluation! He measured closely to his age for what he understands-and for expressive language although it was around 2 years behind, he is coming along. His last infusion went good, we go back on the 23rd I think. Please keep Connor in your prayers to be able to get off his steroids and for infections to keep away.

Love,
Debbie

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,
Debbie

"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.

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!