Making it through...

This past month has literally been a blur to me...we are all pretty emotionally and physically exhausted from all the Atlanta trips and overall chaos from juggling schedules, kids, and household responsibilities. Not to mention Sam trying to function for work and coming home everyday to Connor just a wreck from his meds and the chemo. Ryan and Stacy are managing well, I will say that the bus has been a blessing this year as far as getting them to and from school. I know they need a break too, makes me look forward to Thanksgiving! A few days break will make a huge difference for us all.

My foot is a little better (I sprained it really bad two weeks ago) it is TRUE what they say about sprains hurting more than breaks! Horrible pain and even now it is still bruised and swollen and cannot bend to the right at all. I never went for the bone scan since we are too busy, but I'm wondering if there might be a small break in there somewhere after all...might have to look into the physical therapy the doctor recommended but I hope to avoid it and just keep exercising it myself.

Connor has been back to school two times now. I hope he can resume a more normal scheule next week (praying) he misses his teachers and especially his friend Donte. The break has not been good for him socially, he is not wanting to go to school now at all but once he gets there he is fine. I guess a little clinginess is normal after all he's been through. The class has been sweet to remember him and they all signed a card for him and sent home a fire mans hat the day he missed seeing the firetruck.

Looks like we are in a holding pattern for now with his meds-letting him get through the after effects from today's dose of Rituxan and then watching and waiting before we go to the next step if his OMS symptoms get really bad. We are going to use a medicine called 6-MP instead of the steroids if at all possible, but the worry is it takes time for the new med to start working-so more steroids might be needed regardless. It is an oral chemotherapy that he will have to take everyday but seems to be the lesser of two evils compared to the steroid induced psychosis and pain he endures with the Decadron.

I am very sad to say that it seems like Connor still has not bounced back to his usual self after the horror of the Decadron two weeks ago. It might just be due to the chemotherapy but it is scary nonetheless to see him so changed. Very irritable and grumpy-probably from just not feeling good in general.

Speech Therapy is now cancelled for the next two weeks :-( after our dramatic exit from their last week. Connor was in severe pain and saying his tummy hurt...they have a VERY strict cancellation policy due to so many parents being no-shows, etc. That I was afraid to call and cancel and risk losing his spot. (I am not happy with how this makes it so hard on Connor when he has legitimate reasons to not be there sometimes) so he is screaming through most of the session and I am ready to fall apart from seeing him suffering, yet still struggling to do his speech work....as we are leaving he vomits continuously all over the waiting room. I just had enough- I asked his therapist to please just take him off the schedule for the next two weeks until he is over most of the side effects from the chemo.

The numbers came out today at our clinic (Aflac Cancer Center@CHOA) and 361 new cancer cases were diagnosed this year alone at just this clinic! So sad how busy the clinic stays...but I am soo grateful this is where Connor gets taken care of-wonderful doesn't even begin to describe the care he receives here.

Thanks for checking on my little guy <3
debbie

Lots going on...

Just wanted to let everyone know why we haven't been home to answer the phone or anything else lately.

Connor had to start back on chemotherapy to try and get his OMS under control. Hoping the medicine has the least side effects but helps to control his symptoms. His poor eyes are just dark circles underneath and the doctor thinks it's from all the eye movement making it hard for him to see and then he just strains himself and gets worn down. He has an appt with an eye specialist soon, just to rule out cataracts or other problems due to the steroids.

I cut his speech therapy shedule back from Monday and Friday after school to just Tuesday afternoon once a week. Arranged to get him in there and to a secluded area away from all the kids so he doesn't catch their germs (hopefully)

So I guess we are on semi-lockdown now for the winter. Disinfecting wipes, face masks for Connor certain places, and lots of hand washing....pretty much what we do already just more intense and much more secluded for at least the next 6 months-a year.

Already feeling the effects of it, having to tell the kids we can't do things they want to do. Laurie wanted me to throw a Halloween party at my house, lol, not going to do that!

Connor is having a very rough time with the steroids still-much worse than its ever been. Pain and irritability don't really even begin to describe the hell he is enduring. As if dealing with the physical symptoms from the OMS weren't hard enough on him! The plan to get him completely weaned has not come together yet, hopefully tomorrow I will hear something back from the doctor.

He gets his 2nd dose of the Rituxan on Thursday and two more doses over the next two weeks. Hes not really going to school right now-its just too much for him. Maybe soon he can start back to half days...

Thanks for all the prayers and sorry for the long absence.
Love,
Debbie

Spreading the Word!

Been an emotional month, but a very successful one, spreading the word about childhood cancer! The entire month of September is dedicated to awareness. I've watched my Facebook turn GOLD and seen so many moving videos of warriors that have lost their battle, those still fighting, and the survivors. I cried as "I watched The 46 Mommas Shave for the Brave" in Los Angeles and make their appearance on Stand Up To Cancer. Hopefully one day soon the gold for childhood cancer will be as well known as the pink for breast cancer.

We also had some recognition for Connor's condition OMS on the show "Mystery Diagnosis" on Discovery Health channel. The Jennings Family from Texas and their sweet little girl Alexa taped the episode last May. This was a huge deal for my OMS online group-this is the first national attention the disease has received. It was very emotional for those parents that have seen the episode, I am anxiously awaiting seeing the episode as well, but we no longer have Discovery Health, luckily one of our OMS parents is making copies for all of us.

We have been seeing signs of the steroid weaning process not going well and have begun researching our options. Long discussion with the doctor a couple days ago and no decisions yet...but it is sure to be a difficult process, much more difficult than we imagined. In the meantime Connor is the trouper he always is-and we are taking it day by day. The hardest part is seeing him in pain and getting him off the steroids is the best relief for that issue-but we do not want to exchange one problem for another on a different drug, that might be even more intense. We know that immunosuppression is the best hope for him as far as preserving his brain and sparing him any further damage from the OMS. And his little body can only stay on the steroids so long before we will HAVE to move to another drug-most likely chemotherapy. The doctor wants us to first use Rituxan again, which is a four week infusion and then move on to 6MP, an oral chemotherapy. Me and Sam have discussed this and will only move to this treatment plan when it is absolutely necessary. But it is becoming painfully obvious that he WILL most likely need to move to this eventually. He is just not able to be free of the drugs yet without relapsing with his OMS.

We had hopes of going to the circus this weekend...but decided not to risk it. We also wanted to try and get away for a few days-but just not sure if the kids can afford to miss even a day of school right now. Such is the life of high schoolers, lol. The dedicated ones I suppose anyway....

Please keep Connor in your prayers that his symptoms ease and specifically for pain control in the coming week as we give him an added steroid pulse dose to try and get things back under control. Also, prayers for the others in the battle! Our cancer friends especially right now needs prayers- little Chloe Shiver is back in NY having more stem cells harvested and Patrick Chance's family received devastating and heartbreaking news of widespread disease throughout his body. Truly sad to hear...but his family continues to PRESS ON and pray for guidance from the doctors, and a miracle for their son.

It has been hard to see so much sadness around us but it also reminds us how lucky we are to have Connor with us and doing as well as he is. He is our miracle! Never far from my mind is another lost child, Reid Nelson, an OMS angel now. Never forgotten! We are so happy to share that his parents are expecting a new little baby.

Love to all,
Debbie

Awareness

I cant believe it is almost September! The summer is almost over (well, officially it already is since school has been back in session for 3 weeks) Still SO hot here-wondering if fall will ever truly make it sometime before Christmas. I hope so because it seems most of our plans have been put on hold "until its cooler" lol it is just too hot to really do anything outdoors and it has been like this for a while now. So many things we want to do-go back to the beach, go to Callaway Gardens, go to the zoo...just waiting for the temps to drop at least 10 degrees first.

So its been a long time since I posted an update...Lots of reasons why-mainly being I have been very focused on the kids and enjoying them. Tired of all the electronic distractions-tonight the Emmy's came on TV and it surprised me to notice I didn't recognize MOST of the shows they were raving about! Not much on I am interested in watching.

I wanted to make sure I let everybody know that September is Childhood Cancer Awareness month...the gold ribbon in this picture represents childhood cancer and the purple handprint represents neuroblastoma. Just one month out of the year to try and bring attention to all the kids affected by cancer-way too many.

Connor is doing good. Back in school, adjusted well to his classroom-thankfully its the same one as last year so that helps a lot. Still weaning off of the steroids-this will take some time we are coming to find out...going very slowly as to not risk a relapse with his OMS. He is a trouper though and keeps surprising us with his strength and courage.

The rest of the kids (and Sam & I) are getting used to the new school hours. VERY different this year! Ryan and Stacy like the new morning times they have but they are getting home really late now in the afternoon. The little ones have a very early start but get out a little sooner now. (this sure helps with after school therapy appointment)

3 years and counting...

We have past the 3 year mark now for Connor's Getting sick with OMS...so much changed in such a short time. Thank you to everyone that has followed his progress and prayed for his cure from this horrible illness. He is doing well and getting better everyday!

We have been enjoying our summer, mostly just spending time together at home before the craziness that comes with a new school year. Especially this year-we are going to have new school hours, a little earlier for the little ones and a little later for the big ones. Should be interesting getting into a new routine! Ryan and Stacy will be sophomores in high school and Samantha will be starting 2nd grade. Connor will stay in the same STEPS class as last year, hopefully getting ready for Kindergarten next year. Not sure if he will be in a class next year of only special needs kiddos or if he will be mainstreamed with the other kids. No perfect answers, but I have seen how much he has overcome and I am learning not to underestimate his ability to amaze us with what he can do.

Trying to get a jumpstart on those school supplies while there is still glue and hand sanitizer on the shelves, lol. Samantha picked out a new backpack a few days ago and was worried she might get laughed at if she got a character bag-broke my heart a 7 year old might worry about that :-( I told her I thought the littlest pet shop one she picked out was perfect for a 2nd grader!

We are down to 6 mg. on the Decadron that Connor takes and only TWO days per month instead of three. So far he is doing well with the new dose, we are keeping an extra close eye on him for any possible signs of relapse.

We have still been going to speech therapy twice a week over the summer, it has been so frustrating for all of us...mostly Connor. He is working on his letter "K" now which he pronounces as the letter "T" in order to get the kaaa sound out, the speech therapist needs to use a Popsicle stick to hold down his tongue and then he can use the back of his throat to try and make the correct sound. A lot harder than it sounds. He gets so upset and says he doesn't know how and he can't. I need to practice with him at home on this area, because it is not coming easy for him.

Atlanta next week, going to take Samantha along to play with Connor during the long infusion. Ryan and Stacy are up in Washington state for the month so we are missing them so much. Glad we got to go to the beach with them before they left-we had a good time. I will try and post pics soon, we have some funny ones of the kids together.

Love,
Debbie

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!

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

Snow day 2010!

It never snows in Georgia! We were lucky enough to see some more of the white stuff on Friday. The kids were already out of school on Winter Break, so we got to enjoy the beauty of it and have a fun day just hanging out at home. (everybody shut down so we kinda had no choice on the stay at home part, lol) Here are some pics of the fun!





Of course, by today, most of it was gone. The weather channel is actually saying it is supposed to snow again on Monday! I'll believe it when I see it, lol.
Happy Valentine's Day to everyone!
Debbie