I Will Lift My Eyes

Making it through...

2010-11-03T13:27:00.002-04:00

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...

2010-10-19T19:33:00.002-04:00

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!

2010-09-17T08:04:00.004-04:00

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

2010-08-29T23:11:00.003-04:00

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...

2010-07-10T22:55:00.004-04:00

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...

2010-06-15T02:38:00.004-04:00

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!

2010-06-06T19:48:00.005-04:00

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!

2010-05-22T23:17:00.002-04:00

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"

2010-05-18T23:31:00.003-04:00

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!

2010-05-18T22:47:00.004-04:00

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

2010-05-12T23:06:00.003-04:00

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!

2010-04-26T02:08:00.005-04:00

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!

2010-04-13T22:38:00.005-04:00

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!

2010-03-29T00:15:00.002-04:00

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!

2010-03-09T22:52:00.002-05:00

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...

2010-03-07T22:30:00.002-05:00

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!

2010-02-13T22:34:00.004-05:00

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

Angel Erik...

2010-02-13T22:28:00.003-05:00

It was so sad, soon after posting about Erik, he passed away. Many prayers for his family right now as they are missing him so badly. This is from his caringbridge site...

"This evening at 9:35 pm Erik went to be with the Lord. And we are so happy to know now that he is not in any pain, and he is walking, and breathing the sweet air of heaven"

Erik has been an inspiration for countless people, he lived his life to the fullest. Rest in peace Erik!

Prayers Needed!

2010-02-10T00:24:00.003-05:00

Praying hard for Erik and Sam, and so many others right now. Please if you can, visit their sites and get to know them and offer some support to the families.
Love and blessings,
Debbie

2010-01-27T22:12:00.003-05:00

Hanging out at Scottish Rite clinic together...

Not too surprising-me and Sam are very sick with whatever Connor has had...never had a sore throat like this before! Hopefully we will be better soon-Sam is planning on going to the doctor tomorrow and me on Friday. We didn't make it to the restaurant Saturday night :-( due to all this illness, hoping for this weekend maybe?? The rest of the kids are hanging in there, Connor is still coughing, but not as bad. We did get him checked for strep and it was negative-huge relief!

Infusion went well yesterday, Connor was thrilled to see Rebecca (his favorite nurse) and ALWAYS is happy to see Dr. George. He had brought a pack of bubble gum with him and wanted to give a piece to each of them-he did for Rebecca, but forgot to give Dr. George his piece-he was SO upset! I thought it was sweet of him since gum is one of his favorite treasures and he wanted to share it with his hospital friends. We got lucky and got our next few appts. scheduled, that is so helpful knowing what dates to plan around.

Ryan and Stacy are going to the Springer Opera House tomorrow for another field trip-this time to see the play "Inherit the Wind". They are so excited! Then lunch at St. Luke is always fun for them (not to mention a day away from classes, lol)

Samantha has been enjoying her American Girl doll Emily she got for Christmas, and her sweet Aunt Laurie gave her several little outfits today that she had mailed away for from a lady who handmakes them in China. Samantha was so happy! One is a nightgown and it was funny-as soon as me and Connor saw it we thought the same thing, it looked like it was made out of the same material that hospital gowns are made from, lol!!! He looked at it and said, "doctor" Too funny that he thought so too! I'll need to snap a pic of Emily in the gown to show you all what I mean.

So many kids are sick right now with pneumonia! I guess it is the time of year for it, but it is so scary for me to think of Connor getting it. Please keep our friends Heather and Jason's little boy Jude in your prayers-he is in the hospital right now with pneumonia...and so many others we know too are at home with it. Get well Jude!

Take care!
Debbie

Can it really be??

2010-01-21T22:30:00.003-05:00

Sisters...

All four kids together, never happens, lol...

Connor and Samantha

Little Sami...

Stacy and Ryan

Whoa! Where did January go? I must have missed it or something in the fog of all the sickness with Connor, lol. I cannot believe next month is February! At this rate, 2010 is gonna go quickly.
All is on the mend still with Connor, down to an icky nose and bad cough...he started his steroids tonight so I am hoping it helps get rid of the cough while it does its job on keeping his immune response low. He is STILL on a jammie wearing kick, he cried Wednesday when I made him put real clothes on to go back to school in-poor guy. I'm hoping the morning goes better tomorrow.

The pics above were taken for our family pics this year (minus me and Sam) I did the shooting and he did the wrangling of Connor) I know I have a better one of all 4 of them, but it was too hard to see when I downloaded the pics. Oh well-you get the idea.

Samantha had a good report today-her reading is two years above her grade! I knew she was reading well, but it was still nice to hear. She is excited because she can check out harder books from the school library.

Stacy has started her community service work-I think it is going to go okay-my mother has offered to help with transportation (thanks mom!) She will be working at The Gardens at Calvary (the assisted living apartments for the elderly) She needs only 20 hours, but they are only letting her work in 1 1/2 hr. shifts so it is going to take almost two months to get her hours in! Yikes...Ryan will be at The Columbus Museum, but no word yet on when it starts. I hope and pray they can handle schoolwork and the volunteering at the same time, it will be a heavy load. After freshmen year it will be easier because they will have summers to get the hours in, thank goodness, they are looking forward to that! Oh, and did I mention Stacy's first day is a hospital day for us? Agg! It will all work out though, but I sure wish the location was closer to home-the place is pretty far out from our house.

Congrats to my nephew Steven, today was the 1st day he was allowed passengers in his car while he was driving. Go Steven!!! (the law is a 6 month wait after you get your license) Him and Stacy had Chinese club after school today and guess who drove her home??? YES, Steven! We are so proud of you Steven for being such a responsible young man, and a fun cousin too for the kids to look up to.

Not too much going on this weekend, depends on the weather I guess. Saturday night is going to be a LaMargarita night with the family-the restaurant looks awesome now with the new drapes in the windows! I'll bring my camera and take pics-I am so proud of how it looks, very classy and tasteful.

Thanks for the Relay For Life donations and the well wishes for Connor as honorary chair! Means the world to us knowing how loved he is.

Love to all,
Debbie

What an honor!!!

2010-01-19T23:56:00.002-05:00

We have some very exciting news to share. Connor has been chosen as an honory chairperson for this years Relay For Life! Normally only one child is chosen to represent the entire county and this year TWO were chosen, Connor being one of them and the other being little Chloe Shiver-also diagnosed with neuroblastoma. We always enjoy relay, but this makes it even more exciting and special-we get to share Connor's story and help in the fight against cancer. This years Relay for Life will be on May 14th at Kinnett Stadium. Connor and Chloe will be leading the walk right before the luminary ceremony. I am so proud of my little guy!

Road to Recovery???

2010-01-17T17:13:00.002-05:00

I think we are on the upswing now with Connor's virus, thank goodness! He is still coughing but the ear pain is much better and he hasn't vomited in two days. He lost some weight, I'm sure it will come right back on next week since he is due to start one of the meds that keeps him parked in front of the refrigerator, lol. He also started today the pill version of his weekend drug Septra that protects his lungs from infections immune compromised people can get. We are so proud of him for doing well with his medicine. We appreciate his willingness to take his meds even more after the past week of his vomiting EVERY time we had to give him something.

The big kids are off to spend the night at Nini's house with their cousins, no school tomorrow to everyone's delight! As for me and the little ones-no big plans. still laying low with Connor on the mend.

Thanks for all the prayers for our guy the last few weeks.
Love,
Debbie

Me & my boy...

2010-01-14T22:59:00.002-05:00

Been spending all my time with Connor so this is my first update from my phone, exciting huh, lol? Technology is changing so fast I feel like I can hardly keep up, don't I sound old now?? Haha...

Spent last night at the doctors office after Connor started sceaming in pain about his left ear. This has all been building up since he first got sick with this virus weeks ago! He had croup and fever, major coughing, throwing up since Sunday and now the ear infection. He had to get two antibiotic shots since he is vomiting so bad. He is missing school this week but hopefully next week will bring improvement and he will be back to his old routine.

Samantha started back to dance today! It felt so good to take her and be out of the house, lol. She enjoyed it and seemed happy to be back.

Please keep all our little friends in your prayers, this winter seems really tough on our kids.

Playing Catch up...

2010-01-12T20:23:00.004-05:00

This is a pic that shows our Christmas Elf, she was a lot of fun!

Ryan opening a gift Christmas morning

Samantha thrilled she finally gets Zhu-Zhu pets!

Stacy opening a gift

Look what Santa brought Connor! Tools!

Christmas party in Samantha's class-she got to wear the birthday hat since her birthday is over vacation...

Connor's class party...

Connor's teacher reading a story to the class

Playing "The Name Game" at Connor's school party

Wow, a present for me!

Stacy and cousin Steven at Samantha's birthday party

Samantha and sweet Kate!

Our newest pets! Connor loves his fishies...

Samantha about to perform in her Christmas dance "Toyland" it was beautiful!

The kids with "The Sandman" at Fantasy in Lights

Wow! What can I say?? It has been a wonderful and very busy month for all of us. I hope the pictures tell a little about our holiday fun we had. Connor and Samantha both had school parties and luckily they were timed perfectly so that I was able to go to both. First Samantha came over to Connor's class and then me and Connor went to her party. Exhausting, but very special! The teachers really outdid themselves this year with all the fun activities. Samantha's teacher was especially nice and even let Connor join in with her class the day they made Gingerbread Houses (it was on a Thursday when Connor is off, but I was a helper and I KNEW he would love to make one with Samantha)

Samantha also had her birthday party early in the month, then on the REAL birthday we went to her favorite restaurant to celebrate. Aunt Laurie came to-only fitting since it was all three of our birthdays that day, lol.
We had a ton of fun this Christmas with the little elf Connor got at the hospital! Every day the kids would wake up and start looking for the silly things the elf would do at night...they found her in the tree, hanging from the chandelier, in the dollhouse eating candy, etc...it was GREAT! I even got my twin sister one for her family for Christmas-and some of the money goes to CURE for childhood cancer research, so it is for a good cause.

Connor is sick right now with a very bad cold and cough...it is scary, this is one of the few times he has been sick in a couple years. We usually joke that he is the healthiest sick kid we know, lol...the IVIg is his blessing, it keeps him SO full of healthy antibodies that he usually avoids all the yuckies going around. We had a busy month and he was exposed to a whole lot more than usual, so it could be from that, or just from everyone else having this virus-I just want it to go away! Last week at the doctor he was diagnosed with croup and that is better, now it is just a non-stop cough, but without the croupy sound to it...add in vomiting and low grade fever and you get the picture. No return of OMS symptoms so that is good news! We are watching closely and praying he can get through this without a relapse.

He has been doing awesome behavior-wise! This is a huge breakthrough for him, he has actually been able to entertain himself for a few minutes at a time this past month. I don't know if it is all the new toys or his maturing, but it has been nice to see him playing like a typical kid. He loves his Handy Manny tool bench Santa brought and is "fixing" things for us constantly, lol. Looks like we might be doing a Handy Manny birthday party come April! It is funny because he watches almost no television-so it isn't the show that has him captivated, it is just the tools.

Still going to speech twice a week...I caught myself in a pity party yesterday that I am trying to pull my way out of. This is what happened...I picked Connor up from school and he looked awful (circles under eyes, coughing) and it is such a long day for him from 8:30am-3:00pm, and then we rush to speech therapy and he looks miserable. While there-he is struggling SO hard to make these words come out right, and nothing is coming out right at all...so frustrating for him and for me. I was driving home and just kept thinking "Why?" Why does everything have to be this rough on him? He is only three years old, yet he has a schedule that is pretty tough sometimes for even an adult to keep track of. That lasted about a day and now I am back to my usual, more optimistic self...I know I am lucky he is talking at all. I thank God for that! I just have to keep reminding myself that he is getting better every day and it is progress, even if it is slow.

Ryan and Stacy just started their second semester at high school. The year is flying by! Next month they turn 15 and can get their learners permits and begin driving practice. I can see my stress level going up then, lol! Teaching TWO to drive at the same time :-)

Please keep Connor and all his OMS friends in your prayers and especially all the children fighting cancers. Too many!!!

Love to all-
Debbie

"Holiday Social 2009"

2009-12-17T23:52:00.003-05:00

My handsome nephew Steven, so grown up!

Stacy, my lovely little girl...

My babies ready for the big night!

Ryan looking handsome in his tie

Stacy looking gorgeous!

Is it okay if I shed a tear or two over these pictures?? I am the mom after all, and don't most moms get teary-eyed seeing their kids suddenly looking like they are on the verge of being grown up, lol? I sure did tonight, I am so very proud of my kiddos-getting into the school they both wanted-working extra hard to make it happen and succeeding! Good reason to celebrate!
They attended the high schools holiday social tonight and had a great time. The favors were adorable, wine glasses filled with gel candles and the name of their school and the date written in gold lettering on them-so beautiful! We look forward to 3 more years of them maturing and learning and watching them grow...
Connor was in terrible pain on the way to the festivities-so bad we dropped the kids and went directly to a drugstore to get him some much needed Motrin. Me and Stacy had to massage his legs the entire time in the car just to keep the crying at bay...this joint pain he gets is just soo hard to watch him suffer with! The Motrin did its magic, and we were off to enjoy some Christmas lights while the kids were at the social. Connor and Samantha LOVED one house in particular that goes all out with their light display, so cute seeing their reactions!
Tomorrow is a big day for the little ones-Connor's 1st class Christmas party, followed by one for Samantha's class. Can't wait for the fun!! I probably went overboard (sorry teachers, lol) with the planning for Connor's class-I couldn't help myself. I did little stocking for each of the kids with their pictures on the front and filled the to act as "goody bags", and we will have a pizza party and book exchange for the little ones.
Today Connor and I went to visit Samantha's 1st grade class and we decorated gingerbread houses, I'll post pics once we bring them home! Adorable! Connor ate as many candies as he put on his house, lol, it was funny to watch him. Then he played outside with all the "big kids" He is so tall though he is almost as big as some of the 1st graders. Strange to see him interacting with so many kids at one time-we keep him away from large groups in general, so I was glad he did okay with all the chaos going on...
Love to all,
Debbie

Our Hero!!!

2009-12-15T21:15:00.002-05:00

Clear CT Scan! We are elated and so excited to report that Connor is still NED and doesn't need another scan until the summer, woo-hoo! We saw the doctor today and he is very pleased with everything, the scan and Connor's continuing to do so well. Thanks for all the prayers and support during the scan-anxiety. It means so much to me and Sam to know how loved and cared for our little guy is. We are so blessed!

We discussed how much longer we are going to continue the steroids, looks like it will be around another year. That is good news and bad news-good because the very thought of weaning him off of the steroids scares me, the possibility of his OMS relapsing when the medications are withdrawn is frightening. He could lose words, his ability to walk, etc. I don't want to think like that but it is hard not to remember where he was and we don't want to risk all that he has gained...but, it becomes very dangerous to stay on these drugs too long, then you get a whole other set of problems from the side effects, in Connor's case, bone issues, cataracts, etc. We are going to see an opthalmologist soon just to check and make sure there isn't any eye damage beginning...

We have kept busy with lots of fun Christmas activities...and more to come! Hope everyone is enjoying the holiday season. Love to all!

Debbie

Here we go!

2009-12-07T22:17:00.002-05:00

Please keep the prayers coming for good test results on the CT scan early tomorrow morning! Our brave boy will be in the radiology department drinking the contrast over a two hour period, then get his IV which he will receive the IV contrast through, sedated and scanned...no appointment afterwards with the doctor so we aren't sure when we will get the results. Hopefully the next day (Wednesday)

He knows he is going to the doctor, but I am sure he will be upset as soon as he sees he is in the radiology department, so hard to see your baby scared! Praying that he feels comforted and as calm as possible and that he remains NED now and always.

Blessings and more...

2009-12-04T00:53:00.002-05:00

Hopefully Thanksgiving was as special for all of you as it was for us. We had a good time over at my mothers house(lots of yummy food, Mmm) and mostly just spending time together and watching the kids enjoy themselves.

Connor has been so happy lately! It has been fun to see him laughing, playing, giggling, and silly. We went to the mall last weekend and he climbed right up onto Santa's lap! Even said, "Pools" when Santa asked him what he wanted for Christmas, translation: tools :-) He still has his very hyper, active side that I struggle to keep up with, but it is such a blessing to see him like this.

The only thing that put a damper on the holiday weekend was Connor had quite a bit of pain during this round of steroids...by the 3rd day he was screaming if I even moved his legs when changing his clothes. His mouth also gave him trouble, probably a sore jaw. Through it all, he still manages to get up every day and give each day his all! He is going to speech therapy twice a week now and working SO hard there to get some words out. It is like his mouth just doesn't know how to do it right...He loves his therapists toys, especially a farm he plays with there-so that gave me a good idea for Christmas.

It is hard to shop for him because he really doesn't play like typical kids. He likes to play, but it seems like he prefers just taking in his environment and following me around, "helping" me do everything I do. Some days it feels like I still have a young baby in the house because he can't be left alone for a minute or he might hurt himself or make a huge mess. Today he was alone for only a couple of minutes while I took the trash out and he got a childproof lock off the cabinet and filled the dishwasher with an entire box of detergent! With him so much stronger and taller now, it feels like there is no "safe-place" to keep him anymore. Gates and locks don't work, and he doesn't have enough understanding or self-control to not get into things. I am hoping the older he gets the more this will ease...

Next Tuesday in Atlanta he has his scheduled CT scan to check for any possible tumors. Always a super scary time for us! No easy way to do this test either...2 BIG cups of foul- tasting contrast to drink and an IV in his hand. His port cannot be used since they need to also inject contrast intravenously and that could damage his port. Please send prayers his way for him to remain NED!!! (no evidence of disease) Love to all!

Debbie

"School's Out"

2009-11-23T21:36:00.002-05:00

It is so nice having the whole week of Thanksgiving with the kids out of school! 5 whole days, plenty of time for the kids to catch up on school projects (and sleep, lol) Today was productive, we braved the mall and left with a gorgeous dress for Stacy to wear to the holiday social the high school is having. It is sparkly and pretty and everything a 14 year old girl would dream of! Can't wait to see her and Ryan all dressed up-I'm going to be snapping pics like crazy, lol. Still need to get Ry some nicer duds, boys seem easier though to me. I can guarantee he isn't going to be as excited as Stacy was about her dress!!

Samantha is coming with us to the doctor tomorrow...I hope it is okay she is coming. They have had a "no siblings under 12 rule" since the swine flu outbreak...nevertheless, every time we go there are lots of non-patients around. It just means a lot to her to get to feel included in these trips we make so often...in all this time, she has only come twice. Ryan and Stacy opted to stay with Aunt Laurie, it IS a very long day and they will have more fun hanging out with their cousins.

Speech Therapy is going well, we even got an extra slot now for Connor so he is going twice a week now, Woo-Hoo!! Not easy to squeeze him in since the place he goes is so good with kids-it stays booked solid. We have an awesome therapist too, so we are really blessed.

Lots of fun stuff coming up...Thanksgiving, Samantha's 7th birthday party, Fantasy in Lights, the twins social, etc...busy, but a happy kind of busy! Connor is really looking forward to Thanksgiving, lol. He knows about the turkey and pie part at least and that was enough to get him smiling.

Haven't rescheduled the scan yet-hopefully tomorrow we will find out when it will be. For now we are just thankful he is doing as well as he is! Everyday learning new things and enjoying the smallest things.

Happy Thanksgiving and prayers for all the kids hurting this time of year. And the parents that are missing their children so badly.

Love,
Debbie

Do doggies have ports??

2009-11-16T23:20:00.003-05:00

Haha, snapped this one of Connor in my bathtub-getting all cleaned up from his adventures outside this afternoon...and it was an adventure, he was being particularly naughty and had thrown my telephone over the very tall 6 ft. fence into the neighbors yard and various other pranks he was keeping himself busy with. He is hard to keep up with-and can't be left alone, it is scary the things he will try and do on his own. This morning as I came out from the bedroom just a minute after him-I found him with our little doggie ON TOP of the stove!! Thank goodness he didn't try and turn the stove on and cook her.

As bad as his behavior sounds it is actually much improved from over the summer, he is still hyper and impulsive...but is happier and laughs a lot now. His vocabulary is so limited-yet since we know him so well we can piece together what he wants to tell us now quite often. As for the "dog incident" I asked him why he put her up on the stove and he said, "Beh-Bop" translated to mean "Belle Hot" Oh my!!! So apparently he knew this was a dangerous thing to put her there. Not good at all, lol.

With his language starting to develop, we have heard for the 1st time his thoughts on different subjects...I was telling him a couple weeks ago that Belle needed to go to the vet to get her shots and a check-up. He looked at me and had a concerned look on his face and said, "Beh-Por?" (Belle Port?) as he pointed to his port where he gets his medicine. I was SHOCKED, I told him that no, Belle doesn't have a port-she just gets her shots in her shoulder...never thought I'd be answering these types of questions, you know? Connor has never known any different, his whole life that he can remember is hospital trips and medicines and tests.

Tonight I was doing a little updating on some of my links and I finally made some of the changes I have been putting off...I had to change two of the warriors to angels. It was very hard for me to do, it is like it made it really real-not that it wasn't before, but just hard to see in print, next to the names of such lively little boys. Little Ryan and Braeden, I will always remember you both!!

We have a lot going on the next few weeks...IVIG is next Wednesday in Atlanta and Connor's CT is scheduled for the 1st of December. Please keep him in your prayers for a clean scan. I am hoping to change the date of the scan-it is the same day as our Camp Sunshine outing to Fantasy in Lights. Then we will be back in Atlanta around the middle of the month for another infusion...

Also to do, preparing for the holidays! There is Samantha's 7th birthday party to plan, and Ryan and Stacy have their first formal social to go to since they began high school. Lots of pics to come of these happenings!! :-)

Another Anniversary...

2009-11-08T00:38:00.003-05:00

Seems I am constantly seeing things as important milestones...one of our most important milestones has come since LAST November. It was only a year ago that Connor (at age 2 1/2) could not speak a single word. I waited so long to hear that precious voice say Mama for the first time. I cried when I heard him speak that day-I could see it in his eyes that he knew I was his Mama and that the word was connected to me. What a gift from God and many prayers answered!

Soon after more words came-some we could understand and some we could not. His articulation has continued to cause him great frustration...sometimes he will shake his head no again and again, as we ask him, "Did you say ___?" He now has about 50 words he tries to say-but most of them are only understandable to VERY close family members...But we are proud of him-he has gone from being completely silent to being able to communicate his needs and wants pretty well!

Speech therapy is going very well. Great therapist, and very useful info to try at home to keep him learning new words. I am in awe every time we go how they work with him and get him to make sounds he hasn't before.

He hasn't gotten the H1N1 vaccine...it just simply isn't available. I was conflicted on the vaccine anyway-but I am very worried about this and every other illness just waiting to attack. I try not to keep him in a bubble-he goes to school the 3 days a week after all now. But nothing makes me madder than seeing a sick child at school that does not need to be there! Please keep your kids home if they are sick-not just for kids like Connor with poor immune systems, but for all the kids. H1N1 is hitting all sorts of people, especially healthy kids. Okay-off that soundboard, lol.

Love to all and please keep all the OMS kids and NB kids in your thoughts and prayers,
Debbie

Happy Halloween!

2009-11-02T20:42:00.003-05:00

Is anybody still out there reading this? I am so sorry for the long delay in posting-no excuses except still getting used to our busy routine...Sam traveling so much has put most of the parenting on me-so it means long days (and nights sometimes for me & Connor)
I got Connor back into speech therapy, so we have added that to our weekly schedule-along with his every 3 week IVIG infusion. He is off the antibiotic infusion and on oral meds for twice a week, saves us an hour in Atlanta every time! Woo-hoo!! He is doing great too, walking well & trying to talk more and more. Wonderful to hear, he is improving so much from school, which he loves.
Halloween was fun, we had our big party at my sisters house-complete with a scavenger hunt for the older kids, and musical pumkins and mummy wrapping with toilet tissue, lol! Connor loved his cowboy costume and we even talked Daddy into dressing up as a doctor for the festivities.
Connor is still doing lots of cooking with me, lots of cakes (which he calls "C")He doesn't eat much of the treats, but really enjoys using the mixer and decorating. So sweet!
I was checking my email on Friday and I had a note from our social worker in Atlanta...she and Connor's doctor have filled out paperwork for Make-A-Wish!!! It is a long process, especially with the economy so bad off, but it looks like it will take about 6-9 months for him to get a wish.

I can't believe how excited I am about this...my sister had referred Connor a year ago or so and it depressed me All I could think was Connor can't communicate enough to tell us anything about his wants or where HE would like to go. And with that organization (Kids Wish Foundation) the child HAS to be able to tell the wish...not possible for Connor...even now he still can't express or verbalize enough to do that. But he doesn't have to for Make-A-Wish.

Connor talks ALL the time about going back to Universal Studios where they have a Curious George water park (we went for one day in July) Of course-all he says is "Shoe Wa-Wa" He pronounces George like shoe-but WE know what he means, lol.

Tomorrow is our Atlanta day...Connor is looking forward to doing his arts and crafts there that we save for his time he is hooked up to his tubies.

Thanks for all the prayers!
Debbie

Lots going on!

2009-09-30T22:00:00.002-04:00

Kids are keeping me hopping, high school especially has been a Wowser with all they have going on...dances, homework, socials, field trips, projects, reports, after school activities-you get the picture! Studying with Samantha after Connor goes to bed is killing my evenings too! Busy kids=busy Mama, lol...

Connor's behavior has been much better thank goodness. Still can't leave him alone for second-but he is calmer at least. He seems to really like school now, he is very quiet there, but the routine is doing him good. No new words though-really have hit a standstill again.

Last appointment in Atlanta went good. Connor kept busy with his special arts & crafts he likes to do while he is hooked up. And the BEST part...He didn't have to have the 2nd infusion :-) so we saved an hour! He is on oral Bactrim now Sat & Sun every week. I met with the nurse practitioner and next time we go (Oct. 13) they will run blood-work to see when we will do chemo again...depends on how his B-cells are looking. It's been about 6 months since his last chemo treatments, and I'm hoping after he gets it again we will see some new language and other positive signs like the last two times he has had this drug. (Praying)

We leave for Camp Sunshine on the 9th of October for family camp weekend! I am worried how Connor will do there, but we are hoping for the best. I know Ryan and Stacy will enjoy it (they went last year for sibling camp and LOVED the activities) It'll be some good family time and a chance to meet other families with special kiddos. I'll be sure to take pics to share here!

I need to say a special THANK YOU to my dear friend Theresa and her family for the extremely well-timed card they sent our way recently. I appreciate the love, support, and prayers more than I can say. Miss you guys!!!

Connor is still enjoying cooking a lot. He is so cute "helping" me in the kitchen. The other day I was making a macaroni salad and chopping lots of veggies to throw in-he likes to pull a chair up to the counter to watch. I told him not to touch the knife and he went and got a little yellow plastic knife and spent 30 minutes mashing up a piece of celery with it, lol! It really holds his attention to help in the kitchen. :-) So sweet!

Ryan and Stacy spent quite a few hours last weekend with their Aunt Beth helping her set up Halloween decorations. It is a fun time of year for them-my sister goes all out and we are lucky that Halloween is on a Saturday this year for my sisters BIG BASH. Stacy has her costume bought and hanging ready to wear, it is a funny one this year-she is going to be a Prom Queen with the sash and everything, but with cool gloves and accessories. Ryan is even thinking of dressing up this year and this was a shock because he hasn't for two years now. I'm glad they still want to, it sure makes it fun for all of us. Even Connor keeps signing the sign for candy whenever he hears the word Halloween, lol! He is excited about that part for sure!

I'm not sure yet what is going on at the restaurant for Halloween, but I'll post it here and on Facebook when I find out. I hope things are calmer this year and no one tries to show up in anything crazy-a couple years ago a guy had to be "removed" for not wearing ANY clothing at all...not sure what his costume was supposed to be, lol!

Love,
Debbie

"Awareness"

2009-09-16T23:48:00.004-04:00

September is the month to spread awareness for childhood cancers...September 12th specifically, but all month long as well. Most people aren't even aware there is a special month devoted to this cause-until it is you that has a child diagnosed with this disease.

When you are dealing with a RARE disorder (OMS for example) chances are you won't be getting a month OR a day for your cause, lol. I am realistic, but not giving up on spreading awareness for either condition! Much like smoking leads to lung cancer in many cases-cancer led to my sons brain injuries, making me feel moved to spread the word to everyone I can reach that more research is needed to prevent other parents from going through what us OMS moms and dads and cancer parents have. So here is how YOU can help!

*Support Childhood Cancer research (organizations such as CureSearchand The Children's Cancer Foundation)
*Donate blood
*Donate your time and money to Ronald McDonald House Charities
*Wear GOLD!!! (ribbons that support childhood cancer)
*Volunteer at children's hospitals
*Support Camp Sunshine (programs for children with cancer)

You might notice that although these examples are directed towards fighting cancer, most of them have long reaching benefits for the OMS children as well. Especially the donation of life-saving blood! When we are at clinic we see so many kids receiving blood transfusions, probably more than we see getting chemotherapy. But here is an interesting fact most people aren't aware of-I know I wasn't before Connor became ill and began getting infusions of antibodies every 3-4 weeks for the past two years...

IVIg (Intravenous Immune Globulin) is a blood product administered intravenously. The antibodies are collected from the pooled plasma of THOUSANDS of donors! So you can see how badly blood products are needed for many conditions.

We are going to Camp Sunshine for family camp weekend in October! I was happy to hear this-it should be fun for all of us (well, maybe not Connor, he is still struggling with going anywhere he isn't used to) He is really getting used to his school routine though and is doing GREAT!

More soon,
Debbie

September is here!

2009-09-03T00:38:00.003-04:00

First day at school!

Fake casts courtesy of Stacy-silly girl :-)

Connor relaxing after school wearing a hat he made that day...

Still in the "baking phase" so we are doing a lot of cooking around here.

If you notice the quality of these pics just kept going downhill. A little someone got hold of my camera (again) and messed up all the setting so the pics were awfully blurry. Sorry bout that, lol!

Busy day, like most lately, in a good way though. Connor's behaviors are back to a normal level (for him) that is tolerable...except last week when he did steroid week with nothing on board to combat the rages (won't be doing that again) Sam was traveling, so it was really a tough week, then Friday came around and he slowly started calming down over the weekend. School is going great, he goes in happily most days (more like content) except today-he was probably exhausted from hospital day yesterday in Atlanta. He still let me leave without much fuss, and began his busy day at school.

New changes have been made due to a pretty bad flu situation going on in our town. I pulled him out of his day school (the Tuesday and Thursday one with all the "normal" kids) Just too much exposure to handle realistically with his compromised immune system...I am fine with it though and feeling better about our decision. At least it leaves Tuesdays open for the hospital (we are going every 3 weeks now for his infusions) so he would have missed a lot of time...Plus he has speech therapy on Thursdays.

Tomorrow Connor begins seeing a new speech therapist. I am sure it will work out fine, but this was very upsetting for a few reasons...because of insurance reasons we are no longer allowed to see his other therapist (who he has been with 3 months now) New things are SO hard on Connor, and he was just starting to really hit his stride with the other therapist, so it is frustrating-feels like we are losing time by starting over with someone new. Please pray for the transition to go as smoothly as possible!

It is Childhood Cancer Awareness Month and also the 2 year anniversary of Connor's official diagnosis. Hard to believe it has been TWO years! I am still struggling with my anxieties over his future-but he is doing well right now. I am trying to take it one day at a time, and look at the positives-mainly being-HE IS ALIVE. Thank you Lord for this precious boy! One year ago he had NO words...now he can say Mommy and Daddy and many more. Simple words, like Hi and Bye-and some that we understand and no one else does, lol...But those few words are the most beautiful sound in the whole word. I think I have posted this before-but here is something I wanted to share this month...about what cancer took away from my baby when that tumor grew in his body and caused his OMS. His words that he is fighting so hard to learn and speak...

I Am The Child

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

"New Routine"

2009-08-20T23:08:00.003-04:00

So, What have we been up to the past couple weeks? Just trying to get ourselves used to this hussle and bussle of juggling new schools for the kids (lots of new things actually)

Everyone has adjusted so well to the changes-Ryan and Stacy are really enjoying high school-other than getting up REALLY early, lol. They leave for the bus at 6:30 am...another change-that big yellow thing called a bus, they never did that before. What a big difference between middle school and high school! They are loving the freedom and especially the amazing kids at this school-all of them are so bright and want to be there learning. We are really happy, can you tell?

Samantha too is doing good-had some nervous first few days, but it doing great overall. She has learned the joy of homework (Not!) so that is keeping Mommy busy too. Her stress level from Connor is still pretty high, but at least she has an escape from that at school and thankfully her eye twitches have gone away.

Connor has had the most to get used to-a whole new routine everyday. He has been a trouper through it and stunned us with how good he is at school. He doesn't care much for the nap time, lol, but he does cooperate and lay still for the teacher. He has been twice now to the church school as well and it is going smoothly too. He gets pretty worried, but hangs in there.

The last trip to Atlanta for his infusion was a little scary-his port has been giving his nurse a little trouble twice now...if it is working properly it is supposed to give blood back (for bloodwork if needed) and it hasn't been. It eventually began working again, and next time she is going to try a larger needle to see if that does the trick (praying it does) or it might mean testing to see if it is malfunctioning. That would be bad-a new one would require surgery to replace it. But I have enough to worry about without imagining worst case scenarios-so I'm putting this one out of my head and trusting that it will resolve itself. Some prayers won't hurt either though, lol!

Things at home are about the same (mood wise for Connor) Sleeping better though and that has been awesome! Still wakes up once or twice, but he is able to get back to sleep quickly. Yesterday we saw the doctor to discuss how he is doing with all his raging and destruction and general "flying off the handle for no reason" and we are adding the old medicine Zyprexa back...really feel we have no choice-it has simply come down to a matter of safety for him and everyone else. He is too unpredictable and has no concept of being hurt-and that is a dangerous combination...In the past few weeks he has started a small fire when he cooked Ryan's wallet in the microwave. And burned up all Ryans money, took off countless times...in Walmart I let him out of the buggy for a minute because he was climbing out (seat belt didn't fit around him) and he took off and I could not catch him since I was slipping in my flip flops-thankfully a lady caught him for me...then he opened the door of the car while Sam was driving after he got out of the car seat! We had the door next to him child safety locked, but not the one far away from him. Now we do...Sam had to catch him by his leg while he was still driving...this was terrifying as you can imagine.

I am pretty speechless right now over it all, and this is just the big stuff-the smaller stuff is almost worse I think because it is constant. And the screaming is the worst part , it is all day long, happy one second, raging the next...he threw a wrench at my face and gave me a big bruise...

I am going tomorrow to get a handicapped sticker for my car. (Another thing I have been avoiding) We have always just "managed" with getting Connor to and from different places...we use the stroller a lot, carry him, get shopping carts from the parking lot to put him in, etc. But he is at a size now that it is getting harder-42 pounds is a lot of boy to carry, lol! He has about a week a month, usually right before IVIG, that he doesn't want to walk as much and chooses to crawl-not exactly a convenient way to get to and from places, huh? Also-he has such a hard time in crowds that he just cannot handle the stress of working our way into the school from the faraway parking lot with SO many kids and parents hurrying in along with us...it is a set-up for disaster for him-I guess his senses get overloaded by the noise and all the people and he just becomes a nervous wreck and that sets off more crying. I hope this helps him-at least he will be able to get into the school without having a breakdown or falling down.

As for me-school has been a true blessing to my sanity. I miss Connor while he is there-I feel almost physically ill at the thought of him there struggling, but I know it is the best thing for him. I am keeping myself busy-getting ready for a HUGE consignment sale I am involved with and next week I am going to start covering the morning shift at the restaurant some while my brother-in-law is in class. WOW-I get to be around grown-ups!

Something wonderful arrived for Samantha in the mail I want to tell you about. It was a letter from a little girl named Lia who is 9 years old. I am friends with her mother Patty on my on-line support group for OMS. Patty had asked me since Samantha is having such a hard time dealing with Connor's problems, if it would help if she got a letter from her little girl, who has been through very similar hard times with her brother Tony who has OMS. I hope Patty (and Lia) don't mind me posting this...it was so sweet and touching I wanted to share...in the envelope was a picture of Lia and her horse, and some beautiful things Lia made for Sami.

Dear Samantha,
Hi, my name is Lia and I'm 9 years old. My favorite sport is horse back riding! And I have my own pony named Simba! I live in Illinois. I have 2 brothers and a dog. My 2 brothers are Tony and Sam. Sam is 5 and Tony is 7. Tony has OMS just like your brother Connor. Because he has OMS he always drives me crazy. Tony always hits and screams and talks too much. I sometimes lock myself in my room too to get away from him. But my dog Koby always makes me happy! Your brother can't help it. It will get better I promise.
Love, Lia

Needless to say-I was reduced to tears...happy ones! What a giving and beautiful thing for one child to do for another. We are so blessed. Thanks Patty and especially Lia, Samantha was thrilled beyond words and has turned the letter and gifts into a poster to hang in her room.

Love to all,
Debbie

July Pics...

2009-08-03T23:42:00.005-04:00

We had some fun while dealing with the happenings with Connor at least. We went to Orlando and enjoyed Universal Studios, Downtown Disney, and the drove over to Cocoa Beach...did some shopping at the outlets there, and took some down-time from the dreaded word stress, lol. The kids had fun most everywhere, although Connor stayed in his stroller for most of it. Here you go:

All for now, more to come!
Love,
Debbie

Here's The Plan!

2009-08-03T00:30:00.004-04:00

Me & Sam have been changing our minds left and right over what is best for Connor for this next year...I think we have finally figured it out, lol. The Pediatria place is off our list, it just didn't seem stimulating enough for him-looked like he was going to be hanging out in the baby room quite a bit with lots of babies with g-tubes...I could just see him yanking one of their tubies out or just being left on his own a bunch....

So, we are going ahead and letting him start the special needs class in the public school system. His teacher is very nice and we even found out that one of my friends kids named Amanda who has downs syndrome will be in there too! I volunteered to be the room mom, lol, so it should be a fun year. His first day is next Friday. I don't know HOW Connor will react when I leave him poor thing...PRAY!

I also got him in at Samantha's old preschool for Tuesday and Thursdays from 9 to 1pm. This will be amazing for him there since there are typical developed kids for him to be around. Only catch there is he is going to need to have an aide with him there specially for him...so we have to pay quite a bit more to get him a helper...he is only the 2nd child to do this at the school-so it is new territory for everyone.

Thanks for all the messages and calls to check on us, sorry we have been out of touch, just been trying to get a handle on life lately. The new medicine has helped tremendously with Connor's behavior. It has not been easy, but he is much better than he was before. Samantha is less stressed as well. He has been a busy boy going to speech therapy A LOT, lol, and it has been so wonderful to see how far he has come in such a short time-not so much with talking, but his understanding is improving greatly.

Ryan and Stacy are finally home thank goodness! They start high school on Thursday...I am nervous for them, and excited too, to see how it goes this year. This will be a time of lots of changes for all of us with Connor going to school for the first time ever! At two schools no less :-)

I'll try not to be so long with updates, love to all.

Debbie

--------------------

Really Rough Days...

2009-07-22T23:59:00.002-04:00

I am so sorry for the lack of updates...thank goodness I have a phone with internet now to check my mail, because my time on the regular computer has been ZERO the past few weeks. First the good news! Samantha had the MRI and it was completely normal! Big sigh of relief for me and Sam. Not sure about when/if we will do the CT scan to check for possible neuroblastoma since she is still having the eye flickering...her doctor wants to wait and see if it goes away over the next month or so-he truly feels it could be from stress, which brings me to my next bit of news...

Connor has been extremely difficult lately (as in for the last 6 months he has worsened considerably) He is not the same as he was even a few months ago...he has always had attention issues, but never really any HUGE behavioral issues-until now. I always described him as my "sweet boy" and now we are looking for that little guy again...it seems as though he might possibly have ADHD, although he is young for a concrete diagnosis right now. Most of the children with OMS have severe behavioural problems, we just always thought we escaped that part of it-oh sure-he would be irritable at times, but it was "our" normal...sure he tore the house apart, but that was normal toddler behavior too...he isn't out-growing any of it, and it is so hard to see him like this-screaming constantly all day, lashing out at his brother, sisters, and cousins, and even the dog. Running away any chance he gets, not having any concept of danger, bouncing off the walls every minute he is awake and not sleeping well either on top of it...Then comes steroid week-and it goes from bad to almost unbearable. And he is bigger, stronger, and quicker than ever before-which has seriously put him in immense danger many times now since he is able to get to things he couldn't before (knives, scissors, pills, etc) All of our childproofing has been revamped-locks everywhere, our house is a virtual fortress to keep him in and hopefully safe-hard to do in a house with this many people, even a pencil left on the counter is a potential problem if he grabs it and runs and hurts himself on it.

Samantha is keeping her door locked and staying in her room most of the day (locked so Connor can't come in and scream, hit, and destroy) It makes me so sad that she does this-she is only 6 and can't understand why her baby brother is acting this way. She even said the other day she sometimes won't come out if she needs to potty or is hungry because she doesn't want Connor to yell at her. He can go from fine to hysterical in about 2 seconds...totally unpredictable what will set him off.

In April I saw my doctor for help in dealing with it...thinking it was just ME that needed the help, since I was so stressed from it. Thanks to a great and caring doctor, I got back on my way to normal and hoped things would settle down. They have only gotten worse-he was taking a medicine to help combat the roid rage and in April he began taking it everyday while we looked for better options for him, and only recently discovered that the side effects from that medicine were not going to work for him-so we had to wean him from it. That is when things REALLY went into complete and utter chaos...nothing in his system to help with the steroids, and all we have been seeing is Connor lacking any control over his actions, emotions, and ability to function. He is supposed to start school on August 6th and now we are very concerned how he will do there...

Anyway-what I was trying to say, is that some of this eye-twitching Samantha is having could be from stress. She is a smart girl and very sensitive, this is tough on the whole family. Ryan and Stacy are at least older and can better understand some of it, and thankfully have been in Washington State the last month when he was weaned from the med that was helping a little bit...not that they don't feel it too, but they are busy with school and hang out at their grandma's and cousins houses-so that all helps. Stacy is pretty lucky-Connor doesn't direct that much anger at her, he idolizes her, lol...

I am off to bed now-Connor just woke up again...thank you for all the prayers for Samantha, please keep us in your prayers while we figure out how to help Connor.

Love,
Debbie

2009-07-03T01:18:00.002-04:00

I LOVE the pic above! Just thought I'd share a pic of two of my guys for ya'll...It is rare to get Connor sitting still for a pic, so this was a rare photo op.

Lots of news in our house, and lack of news as well...still no idea what was going on with Samantha-her urine and blood came back normal thank goodness-but we have been playing heck trying to get her scan scheduled! It seems it is easier to just go to an ER than wait for the doctors to set it up...we had it all set for here in Columbus when I got a call saying that we would need to go to Atlanta to do it and that they would call me with the appointment date-STILL nothing, even though I have called to check on things. Aagg! Good news is she is doing much better-I'll keep you all posted on what happens.

As for the news we do have, Connor FINALLY got approved for the Katie Beckett Waiver This Is HUGE for us, not only financially since it will take a lot of the burden of Connor's medical bills off our shoulders, but what it means for Connor himself is the really great part! Here are some of the ways it will help him as a secondary insurance:

*Speech therapy will be covered (we have battled our insurance company for 1 1/2 years to cover ST and they did approve 20 visits this summer...guess what? We just got a bill for those visits, they seem to have changed their minds...so here it adds up (Evaluation $ 165.00, Co-pays for bi-weekly visits $40.00 a week, session fees for bi-weekly visits $160.00 a week) See how quickly it all adds up?

*Will pay all co-pays on Connor's Medications

*He now qualifies to get services from Pediatria This is the nursing business that would have enabled us to get Connor's infusions done locally, instead of traveling to Atlanta for treatment...our insurance doesn't pay for this service and we were turned down. They also provide respite services and day care for medically fragile children.

Can you tell we are excited?

So, we have some decisions to make about the next year...how this effects school for Connor and if he will go to private preschool or Pediatria on his days he isn't at the special needs STEPS program. Right now I have some research to do, and that will help me figure out the best place for him.

I talked with Connor's doc a long time last Friday...Sam took Connor to the playroom at the clinic so I could discuss things.

We made some decisions-about ongoing treatment plans, and I got the name of a child psychiatrist we need to see to follow some of the meds Connor is taking, didn't end up helping since that doctor won't take our insurance (Agg again, lol!) On to more researching, right?

Looks like Connor will be doing the steroids for probably another two years...I sorta expected it-but I just can't quite stomach the thought yet, you know? I asked if he should have a bone density scan soon since steroids can result in bone loss-but Dr. George was honest and said we didn't really need to because no matter the outcome of a test like that-the benefits of taking the steroids outweigh the risk to his bones...

He talked very seriously about his immune-suppression putting him at risk, since he can't afford to catch any little bug-we will probably bump up his IVIG to every 3 weeks instead of 4 to help keep him healthy, especially with school starting soon and him being exposed to more germs than he ever has before. It will probably help with his walking too-since that last week before he gets IVIG he falls a lot and crawls on the floor quite a bit.

Then the hard stuff came-the future...he said he is very happy with his progress he is making right now but that we need to prepare ourselves that come age 5 or 6, he might just stop/slow down progressing. Most of the stuff we learn is happening RIGHT NOW, the critical age for development and once you hit those ages it is harder to keep advancing. He said he hopes he is wrong...I hope he is wrong too-but I don't think Connor is going to get out of this unscathed...he is sooo far behind developmentally...even the words he can say-nobody can understand-I am the official translator these days.

Just keep praying-he IS doing so much better and every day is learning new things and words. Right now we just finished steroid week and it was pretty rough on him and on Samantha, poor girl needs a break badly from her little brother after the steroids...Tomorrow Sam is off and we are going to see the new movie "Ice Age" while Sam keeps Connor-so that will be good for her (and Mommy)

Ryan and Stacy are in Washington right now and we miss them terribly! But I know they are having a good time and enjoying themselves before it is on to high school. WOW, I still can't believe they are going to be in high school, lol.

Please keep many of our little friends in your prayers...Patrick Chance, Ryan Morgan and his mom Missy, Will Lacey, Chloe Shiver, Liam Witt just to name a few...and please keep Nathan's mom Susan in mind as well, as it has been almost two years since he became an angel.

Deb

Fun in the Sun!

2009-06-22T00:18:00.003-04:00

Can you guess what we did this weekend? Yep, went swimming! Saturday was SO incredibly hot-there wasn't much else anyone in town felt like doing. Connor had a great time (as you can tell from the pics, lol) He loves anything and everything that has to do with water, so he rode in his float, played in the baby pool, and even helped water the flowers at my mothers house. He has come a long way with his fear of water and even let me hold him in the pool for the first time in TWO years :-) We even brought Belle along for the fun, and she kept sneaking drinks of water out of the baby pool, lol...

Should hear back from the pediatrician's office tomorrow about when the scan is scheduled for Samantha. It will be of her chest, abdomen, pelvis, and brain and we will be able to do it at The Medical Center, since she won't require sedation. She knows nothing about it at the moment, I plan on just telling her we are getting a picture like an X-Ray, to make sure she is doing okay from the inside out. Also, we should hear back the results of the blood and urine tests that were done last Wednesday (praying for great numbers here)I will feel much better about things if these look good. As for Samantha-she is doing well, her eyes have settled down and the double vision is happening less often.

Connor is due to start another round of his steroids at the end of the week, so we are enjoying his mood right now before the roid-rage kicks in...tomorrow after speech we are going to play miniature golf (Ryan and Stacy's favorite!)

Love,
Deb

Pics from our trip to The Coca-Cola Museum in Atlanta

2009-06-17T23:17:00.002-04:00

Something I'm not good at...Waiting

2009-06-17T23:12:00.002-04:00

Still no clue on what is going on with Samantha...went to the opthamologist Monday and he did a really thorough eye exam with SO many different tests-not just reading letters-but tests that looked into the structure of her eyes and he said everything is perfect. 20/20 vision, eyes perfectly aligned (inside and out) no infections, blocked tear ducts, etc...he sees no reason for her to be having the double vision and the rapid eye jerking and blinking.

He wrote orders for her to get her blood and urine tested. We went today and did that...In about 90% of cases of neuroblastoma, elevated levels of catecholamines or its metabolites are found in the urine or blood. Of course, Connor had this test and he was in the 10% that didn't show elevated levels, but he thought it was worth doing since her eyes are involved.

The nurse practitioner at the ped's office called today to check on her and I have a feeling they are going to order an MRI or CT scan just to rule things out. Right now we are feeling pretty positive about things, that it is just a weird occurrence with no explanation...

The eye doctor did say if it was his child he would get her scanned...brain and body, just in case...we are going to ask Connor's doctor his opinion and go with that most likely.

It has been over a week now and she is still having double vision, but not as much jerking going on. We are simply praying!

Shameless brag!

2009-06-10T04:11:00.002-04:00

Normally I would not be prone to posting self-pics here, but I decided to since I have suffered thru almost 2 1/2 YEARS in braces, lol! Here are my teeth as of a couple months ago-getting there, finally (whew!) I'll try and get a newer shot soon, before the braces come off for good-but I since I have been getting some requests for new "brace face" pics-here you go! Enjoy :-) I am really looking forward to the BIG day when I no longer have to worry about them. It will be funny for Connor-he has never known me without braces-to him it is perfectly normal to have a mouth full of metal. When I am all done-I'll do before and afters-what a difference!
Deb

Look-A-Likes?

2009-06-10T02:09:00.003-04:00

So what do you all think? Here are a couple pics of Samantha when she was 3 1/2 years old (right after Connor was born)...I can look at her face and see so much of Connor! Granted-he is on mega-doses of steroids and it has changed his looks by filling out his face a lot and giving him more facial hair than most 3 yr. olds normally have, lol, but they look quite similar to me still.
Rough day today with Connor-more of the raging even though he should be calming down from them...poor Ryan and Belle are bearing the brunt of it unfortunately-lots of anger taken out on them for some reason? With Sam on the road so much now, it is really hard to keep up with the mood swings and sleep issues all by myself...it is giving me sleep issues just from dealing with his, lol.
This is the 2 year mark now for us from when we first noticed Connor's symptoms and our lives changed forever. When will I stop counting all these "anniversaries"? June will always be remembered for how he was deteriorating before our eyes, July and August for the unknown and hospital trips, tests, and fear bigger than we could imagine...and September as the soul-splitting diagnosis was given to us-followed by more test results in October, good news that his cancer was able to be surgically removed, but being told it is at a cost to his brain and entire future with the OMS diagnosis. Certainly not how we pictured the first few years with our baby boy...still-he has been more JOY than we could ever dream possible, when he smiles-we call it his "million dollar smile" :-) And his words that are just now forming are a gift to our ears and more precious than we knew possible.
Samantha has been having some eye twitching in her right eye the past few days-which has me completely freaking out on the inside, trying to stay calm on the outside...probably nothing, but any sort of eye movements to a parent of an OMS child are reason to let panic seep in. In any case, I am going to take her to the eye doctor/pediatrician if it continues...
Good-Night and please remember all our NB friends and OMS buddies in your prayers!
Deb

Late Night Ramblings...

2009-06-09T01:24:00.003-04:00

If you happen to notice the time of this posting-it is late at night. The ONLY time I seem to have lately to jump on the computer and try and catch up on blogs, Facebook, mail, etc...tonight I blame the late hour on too much Coke Zero and enjoying the quiet in the house since all SIX kids are sleeping, lol (yes, six!) My niece and nephew are spending the night tonight and it has been so much fun having them over. Today (June 9th) is my nephew Kevin's 14th birthday! Happy Birthday Kev-you are such a good kid (can I still call you that, lol?)

Connor is doing really good. He is loving his special toys-mostly Play-doh and playing with bubbles. He plays in the sink when I have soapy water, outside with his bubble containers, and especially bubble baths! He says "bubbles" so many times a day, I lose track...Still so good to hear him babbling and making real words.

Kevin had his birthday pool party this past Saturday and all the kids had a wonderful time-Connor gave us some cause for worry when he refused to wear his bathing suit for the festivities...I guess when you think about it-you take off your clothes for a bath, why not for the swimming pool? :-) Luckily it was mostly family and we did finally get his Thomas trunks back on him...And I have some funny pics to embarrass him with when he is older, lol. He was fascinated with a bubble machine Aunt Laurie had going during the party-it was a purple octopus that is battery operated and automatically blows bubbles-it was a hoot watching Connor chasing the bubbles!

Samantha started at her new ballet school and is really enjoying all the one-on-one attention she gets (easy, since there is only 3 girls in the class including her) Ryan and Stacy are keeping busy with their cousins, reading, and going to the movies a lot.

Connor began his new speech therapy sessions with a new teacher who is very sweet and he seems to like a lot. So far he has been twice and both times did very well-considering she is still new to him. He is going twice a week this summer and as always I tell myself how good it is for him to be meeting new people and going new places in preparation for August when he will be experiencing LOTS of changes in his routine when he goes to school for the first time.

No more hospital until the end of June :) when he goes for his regular IVIG appointment...this months steroids were rough on him again, so any break from more owies is welcome. He had lots of rage this time around and the joint pain along with it...his sleep has really been going downhill (common with OMS) and this certainly didn't help. We are waiting to hear back from his doctor right now about what to do about the issues. We had our appointment in Atlanta with his neurologist-but he gave us no answers and we left being told to consult a psychiatrist on medicine issues-NOT the help we were seeking, or what our doctor sent us there for in the first place...I am trying to see the positive in it though and if he didn't feel comfortable having Connor as a patient, then I am glad he came out and told us to find a new doctor.

We went to the Coca Cola Museum in Atlanta after the appointment. Ryan and Samantha enjoyed it a lot (we were minus Stacy, she opted out this trip) Sam and I didn't enjoy it much due to Connor's reaction to the museum (he cried the entire time we were there) We felt bad later, we timed it just terrible-right after a dr. appt, right after steroids, and when he was most likely hurting...at least two of the kids had fun...these days fun seems to be hit or miss depending on how Connor is doing.

Startling news this week about Patrick Chance, he has relapsed with NB, after a year in remission...His parents are ready to fight all over again and are making plans to fight back hard! Please pray for Patrick and his family.

Also, Super Ryan and his mom Missy need your prayers as well. Both of them are having so much pain, and are in and out of the hospital constantly. May God ease their pain and give the entire family peace and hope to get through these hard days.

Love,
Deb

Home Sweet Home!

2009-05-28T22:46:00.002-04:00

Our dining room with its new floors...

Connor looking pretty bored during a recent shopping trip, lol...

Handsome fellow!

Bubbles! One of Connor's new words-he loves playing in the sink lately :)

Connor's favorite thing to do these days, play with Play-dough-which has been great for his fine motor skills.

A couple months ago I decided I wanted to change most of our carpets to laminate flooring-well, we finally made the big switch this past weekend and What a difference it has made! The whole house looks cleaner and feels more open and airy. We are loving it...didn't love the mess though-luckily that only took a couple days to box things up and rearrange things after the crew was done working. Sure made me realize I don't want to have to go through the ordeal of moving anytime soon-it was a BIG job just doing this with four kids in the house, lol.

Yesterday we were supposed to have a nice "easy" day at the clinic...didn't need to be there until 1pm (instead of getting up at 5:30am for an 8:30am appt like usual)

I thought it was strange we got a 1pm appt., since it takes 5 hours for Connor to get done ??? which would put us at 6pm to leave, if they jab him as soon as he walks in the doors (not likely, lol)

We get there and they didn't even have him on schedule due to a major mix-up...So the meds hadn't been ordered or mixed (which takes forever because you can't stir the IVIG, it has to dissolve slowly)

Stacy and Samantha had come along (Stacy for the first time ever to Atlanta) and were SO good, but bored out of their minds. At 4pm Stacy asked me how much longer and when I told her "Hours" she looked shell-shocked. Poor girl-I don't know if she will want to come back again

All I can say is thank goodness I brought the play-dough! It kept Connor busy most of the time...

I need to be sure I keep him on a very exact schedule for his IVIG...He was due to have it last week, but with all the end of the year celebrations at the kids schools-we delayed it by a week. He has been crawling SO much and it just breaks my heart when he does this-to see this big boy on the ground on his hands and knees...anyway, he usually is feeling better within a couple days and walking well too.

I am sick right now, and Connor has a yucky nose (I'm hoping he doesn't get worse) I think our beach trip this weekend might be on hold :( unless a miracle recovery happens for me in the next 24 hours, lol...I'm not worried though-we have plenty of time, I was just looking forward to seeing Connor and Sami enjoy the sand and sun...and Ryan and Stacy LOVE going to the beach, so I know they will be bummed if we delay it a bit.

Oh-some good news! I hope to get my braces off before the end of summer. I need to dig out the OLD pics of my teeth for comparison purposes, lol. WOW what a difference almost 2 1/2 years in braces makes! By the way-YES, I am looking forward to some of the forbidden foods I have missed out on...corn on the cob especially. It would be cool if they were off by the 4th of July.

Love to all!
Deb

So much to share, where do I start?

2009-05-20T00:35:00.005-04:00

Samantha & me at Relay for Life 2009

Connor enjoying the Gatorade cooler at Relay for Life

Stacy, me, Sam, Samantha & Connor on a VERY windy night at Relay!

Samantha about to get her hair styled for dance pictures, sporting her hot pink cast

At least the cast matches one of her costumes, right? LOL

I guess the only explanation for my lack of posts is feeling completely overwhelmed (is that a good excuse? lol) In the past month, my schedule went into overload with the addition of DAILY visits from various teachers/therapists and varying appointments. It is coming to an end now (the home-bound schooling part anyway) now that school is almost over...hopefully I will be able to get more computer time in now :) And come August, Connor will be a school-boy! I can't wait to see how much it helps him develop.

Sam has traveled the country the past month-Tampa, St. Louis a couple times, San Antonio...now he is home for a bit thank goodness! He missed all the fun of the various teachers, therapists-not to mention ANOTHER broken arm for poor Samantha! YES I DID JUST SAY THAT...While we were in Atlanta doing Connor's 3rd chemo treatment, she fell down Aunt Laurie's stairs and fractured her elbow :( She was put in a long-arm cast, but luckily was able to get it taken off in time for her big dance recital. This time she opted for hot pink and even had her professional dance pics taken with it (insert lots of jokes here about covering it with sequins, etc)

Connor is thriving right now and is so alert-it is such a blessing to witness his curiosity of the world around him! Constantly pointing to ask "What is this?" So I tell him what various things are hundreds of times a day-thrilled he is doing so well and that his brain is functioning well enough for him to be this curious...Most 3 year olds ask questions constantly-this is just his way of doing it with the pointing, so it is good to see (and hear) him acting like any other child his age...just quieter still-but he is trying to form some words. We contribute this most recent "burst" of learning to the treatments he has endured the past couple months-and also prayers being answered, so keep praying! It is working!!!

Let's see, his new words are:
La-La (for Aunt Laurie) he is actually calling her by name now!
Help (he pronounces it bup, but he uses it appropriately)
Flower (kinda garbled, but we know what he means)
Moon (he is good at this one, although the Nike symbol on shoes is NOT a moon Connor, lol)
Wa-Wa (for water of course)
Thank You (he signs this and it is not understandable at all, but he is trying)
Boo-Boo (for owies AND Samantha since that is her nickname...means baby in Arabic and it stuck)
Moo (for a cow sound)
Tea (his favorite drink!)

This is all since he began the Rituximab 5 weeks ago-Amazing!

Relay For Life was last Friday and our team raised over $7,000!!! My favorite part was seeing the kids have such a good time...running around, cotton candy, playing in our tent, etc...Can't wait until next year to do it again! Thanks to everyone who donated and came out on Blanchard night at the restaurant-ya'll are awesome!

I also wanted to post this video that was made of Connor and his OMS buddy Makhi by a lady on u-tube. Makhi's mom just happened to stumble across it...I think it was very nice of her to take the time to do this video, I'm for anything that helps spread awareness. Here is the link if you want to check it out-Connor appears about halfway thru the video:

http://www.youtube.com/watch?v=UeT1vx26_2g

If you get a chance-check out my friend Samm's blog (Deqlan's mom) Her fundraising project "Scrub A Dub Dub 2009" (to benefit kids battling cancer by providing them with personal hygiene items, toiletries, pajamas, etc. A lot of times these kids arrive at the hospital with only the clothes on their backs-so the need is great) It was a HUGE success thanks to her hard work and dedication. Way to go Samm! She has posted some awesome pics of all the beautiful hampers filled to the brim AND the beautiful balloons her sister Meggie created to honor warriors , survivors and angels (including Connor) Thank you Samm for inspiring so many to give back as you have!

Tomorrow is Samantha's Kindergarten graduation and Friday is Ryan and Stacy's awards program at middle school. I can't wait for summer to get here, it will be so good for everything to slow down and for us to get to enjoy things together.

Love to all!
Deb

Birthday Slideshow!!!

2009-05-13T00:15:00.003-04:00

I couldn't resist putting together a little photoshow of Connor's birthday weekend. He had a great time, at the hospital, at home, and at the park-all the places he loves (well, except the hospital, lol) We are so blessed and I just wanted to share our fun with all of you who pray for Connor every day. Love to all of you!
Deb

Sorry for being MIA...

2009-05-07T00:27:00.003-04:00

Train fun at Connor's party-or maybe a fight over a choo-choo?

Connor had on a Thomas the Train bathing suit-then decided to take it off, lol.

The Thomas Cake

Need a bigger pool!

Fun outside at the water table.

Just busy-like all of us, lol. Sam is the traveling man these days, different city every week with his promotion. So I am playing super-mom to all the kiddos, who I swear are gonna do me in, lol.

Samantha broke her arm again. She fell down the stairs at Laurie's house last Friday while we were in Atlanta getting Connor's chemotherapy (insert guilt feelings her, lol) Really bad timing-dance pics were today and she is so worried about having a cast in them...the doctor did say it could come off for the recital thank goodness, might go back on after-but at least her big night will be cast-free.

Connor has been raging terribly on the steroids, more from pain than the usual craziness he gets-so he is on an every 4 hour pain med cycle right now. Poor guy is miserable...not much else to say except it breaks my heart to see him like this. He also has begun his homebound schooling-which has been rocky getting started. It is only because his immune system is so low that he is getting these services at home, and since not many kids do this at home-it is new to everyone, us and the teachers. It is only 30 minutes twice a week with the teacher-so he isn't getting a whole lot of time with her-but it is helping him get used to new people, which is a good thing for him.

Stacy and Ryan are excited about summer coming (me too!) School lets out on May 22nd, so not much longer. I can't wait to have more time to spend doing fun things, rather than just rushing around like we are lately.

I'm going to keep this short so I can post soem pics...Love to ALL of you and thank you for all the sweet calls to check on Connor. I appreciate it, especially with Sam traveling, it helps to not feel so alone.

Deb

Gearing up for Relay for Life!

2009-04-27T03:17:00.003-04:00

Here are a couple pics of me & Connor from last years Relay for Life. (I'm 3rd from the left in the team pic and Connor is sporting his survivors T-Shirt in his pic) We were on the Blanchard Elementary team (my sister works there and they graciously allowed me to join their team) Little did I know that the following year-Samantha would be a Kindergarder at Blanchard!

The actual Relay is on May 15th, but we are having a fundraiser this coming Tuesday at the restaurant, if any of you want to stop by for some dinner and support our team. We are donating 20% of the nights profits to the Blanchard Relay For Life team, so come on out!!! Should be a fun night, Samantha has ballet class, but I will be there and would love to see all of our friends if you are able to make it. Here is the info from the flyer:

Come enjoy some good Mexican food & support a worthy cause!

When: Tuesday, April 28th
Where: La Margarita Restaurant @ the Landings
Why: To benefit the Blanchard Elementary Relay for Life Team
Or donate on-line at our team page
http://main.acsevents.org/goto/Blanchard

See you there! :-)

Look Who's Three!!!

2009-04-27T02:38:00.005-04:00

Pics to come and all the fun details! I can't believe my baby is three now. Love you so much Connor and I am so proud of you for all you have endured and overcome. You bring us more happiness than we can ever put into words...you are our JOY.

Connor was a champ again at the hospital Friday. He took a long day full of meds and needles and did better than Sam and I, lol. He played, did artwork, slept, ate, walked around, watched Caillou on his TV (his new obsession) and stayed in a good mood through TWO infusions! Meanwhile me and Sam were regretting staying up late the night before, lol.

We learned at our meeting with the school system last week that Connor will be receiving three full days of school next year, being pulled out for speech therapy twice a week and once a week for occupational therapy. He will be at Samantha's elementary school-so that will help with transportation issues, since I can take them together those days (woo-hoo!) This was all VERY good news for us and especially Connor. It will be lots of changes for him come August-but I can't wait to see how he progresses after he is there. In the meantime he will, receive some services at our house until May 22nd when school lets out for the summer, since he is doing the Rituximab right now and his immune system is so compromised from it.

More later with birthday pics!
Debbie

Easter Fun...

2009-04-22T17:23:00.003-04:00

Stacy, Samantha, Connor & Ryan's Easter baskets.

Connor and cousin Adam hunting for eggs outside.

Cousin Steven & Stacy at our Easter party.

Connor coloring his eggs! He did so many I lost count, lol.

Samantha & cousin Erin at the mall with the Easter display.

Thought I'd post some Easter pics of the kids-wish you could tell from the pics HOW much Connor enjoyed himself! He was a pro at coloring eggs and seemed to really get into the whole Easter basket thing, lol. He could tell which basket was his (Elmo) and carried it around all day enjoying his goodies.

We started going to a new church a few weeks ago and Easter Sunday was different for us in a new place, but special because it would be Connor's last time in church for a while until he builds some immunity back up. Me and Sam hope to trade weekends so the rest of the kids still get to go. We wanted to get the kids used to the new church before fall when Ryan and Stacy need to start their Confirmation classes, and next year for Samantha with First Communion. So far, they all LOVE it! Hopefully that is a good sign that this was the right thing to do...it is just so much closer to our house and the children's programs are amazing. As a plus-the kids also have friends that go there, so we are hopeful it works out for the best.

The new treatments are time consuming, lol, but so far Connor is doing great with everything. He had no reactions to the Rituximab last week and we return on Friday for dose #2...He will also be getting his IVIG that day-so it will be a long day for him (and us) The chemo drug is being given VERY slowly and we think it helped prevent any blood pressure/hives type of reactions like last time.

His birthday party is this Saturday-we hope he isn't too wiped out to have fun. We are keeping it pretty small and mostly outside to help with the germ issues. I am so excited to see how he does this year at his party-he doesn't know what a birthday is or even how old he is...but he is SO much farther ahead than he was for his 2nd birthday party. He knows what cake is for sure! It will be a Thomas the Train Cake since he loves him so much.

Stacy & Ryan have been super busy with the CRCT testing at school...very stressful for Stacy since she puts so much pressure on herself. Samantha is over the moon right now with excitement over her dance recital coming up next month-she got her three costumes last night and I have never seen her more anxious to see anything in her life! They are beautiful and fit perfectly. Her favorite is the jazz costume-which made us all laugh, because it is something that I would never let her wear except for this dance, lol...little silver hot pants with a sequined top! Add silver arm bands and a matching headband and I have to admit she looked like a doll in it. Sorta looked space-age to me, but super cute. Her dance teachers really outdid themselves-and are experts at sizing children because EVERYONES costumes fit SO perfectly. Thanks Judy & Leah!

More later with an update on our meeting tomorrow with the school district and how things go Friday at clinic. Not to mention the festivities this weekend! Thanks for checking on us.

Debbie

Goodnight Sweet Braeden...

2009-04-18T23:06:00.003-04:00

We knew it was coming, although we prayed for a miracle...but brave little fighter Braeden Burgess passed away last night. You have to sign in at Carepages to read his mom's updates, so for those of you not registered there, here is what his mother posted today. Braeden was only three years old and has been battling OMS and Stage 3 neuroblastoma...

"Braeden was called home this morning at 2:27 am. He woke briefly and mom and dad were both with him, holding him. I believe he knew we were there and understood what we were telling him. He is now healed. Not the way we all had wanted, but in God’s perfect way, in His perfect plan. There is no more pain or sorrow for Braeden, and he had many friends awaiting him in heaven. While in the hospital, an arena race car driver visited the oncology floor. Because Braeden was in ICU, he couldn’t go to see her but his child life buddy Rhys had her autograph a checkered flag for him. She wrote, “finish strong.” He couldn’t have finished stronger"

Loved by so many...now missed by so many. Please pray for his family and leave a note if you stop by his Carepage. His link is on the right-hand side of Connor's blog.

Finally-some GOOD news!

2009-04-15T01:30:00.003-04:00

Connor had his CT scan today in Atlanta and it was clear-Thank the Lord, he continues to be NED (no evidence of disease) It is always a day full of anxiety, leading up to and the day of, worrying-always remembering his positive N-MYC gene found in his tumor (meaning the tumor is more aggressive) Sure keeps us on our toes and reminds us how quickly things could change...So little is known about kids with Stage 1 NB who are positive for this gene, that we always feel a huge relief when we get the all clear. Thank you for all the prayers for Connor!

He did great with the contrast at first-it is just such a large amount of REALLY gross liquid for anyone, let alone a 2 yr. old, to consume. We played a game of feeding it to his pals Mickey, Elmo, and of course Mama and Dada, lol-it worked for a bit...until the nurses came in with the SECOND cup for him to begin drinking and all kinds of scary looking equipment that he just knew was meant for him. Poor sweet boy-he was doing so well until then...after that, he was hell bent on getting out of there and NOTHING was going to console him until he got his wish (MUCH later)

For some reason the radiologist decided it would be okay to use his port instead of an IV for the contrast, which needed to be injected just prior to the scan. This put us in an odd predicament...We certainly did not WANT him to have to have an IV, but in the past we have been told the contrast could cause problems with his port and we do not want that to happen under any circumstances...that could mean surgery to replace the one he has if his starts to act up. It took a lot of reassurance for us to say, "Go ahead and use the port" They say now that he is older it is alright to do-pray they are right about that! LOL So good news, no IV today...he was accessed and we took him to the scan room where they had to use an insane amount of anesthesia to knock him out-he is a fighter right up to the last second-half sedated and STILL twisting and turning and moaning, "Baaah..." for his beloved bottle he hadn't been able to have at all, since he needed to be NPO all day for the scan...We hovered over him, soothing him until he was out, and then watched as the scan was performed. As hard as it is to see him crying and upset-it seems even harder to see him like this :(

Once the scan was done we had a quick lunch and headed to the Aflac Cancer Center, where we assumed he would be beginning his Rituximab treatment today. As we waited-it was getting later and later, too late to start ANY infusion, much less the Rituximab, which last time required some stopping and starting, and slowing down the infusion rate based on his reaction to the drugs (hives, BP issues, etc) We hoped to at least get his IVIG in-but no time for that either...he ended up getting his monthly antibiotic infusion-so it wasn't a complete waste of time being there-or waste of already being accessed for the day, lol.

The next four Fridays (starting this week) we will be in Atlanta doing the Rituximab treatments. His IVIG is pending (we got approved by our insurance for 6 hours a month of home infusion services) and hope to get it done at home for the first time next week. This will be a huge blessing! No shuffling kids around for the day, or night before, or traveling back in forth for this infusion. The doctor still wants to see Connor every 4 weeks, but it is much more do-able to go for just an office visit.

So that is the latest...A huge thank you to Aunt Laurie for keeping Ryan, Stacy, and Samantha and taking such good care of them while we were gone-even taking Sami to ballet class, lol. And to Aunt Kristi for helping with Samantha getting back and forth to school AND cooking dinner for the kiddos too :-) And to Nini for picking Ry and Stacy up from school. We couldn't do it without you guys and love you sooo much!

Deb

Please watch! Video of Rowan & his battle against OMS...

2009-04-15T01:27:00.002-04:00

My friend Liz has a beautiful new video of Rowan's struggle against OMS!

His mom Liz just uploaded Rowan's video to YouTube. Feel free to forward it to anyone you wish. She made this video to promote OMS Awareness. She said if it helps ONE child receive the correct diagnosis, then Rowan's suffering won't be in vain! It is SO worth watching...

http://www.youtube.com/watch?v=yH448sfBtN4

--------------------

Trying to perk up...

2009-04-14T00:17:00.003-04:00

The BLOG and myself! Hope you like the new spring look of things, lol. I noticed I wasn't updating and thought maybe it is because it looks so depressing over here. So this is my attempt to brighten things up!

Here is a recent pic of Connor looking like the big boy he is quickly becoming. He doesn't usually sit in Samantha's booster seat, but his baby cousin was along for the ride and he had the regular car seat. What a treat Connor thought it was to ride in her seat! He was enjoying a forbidden pack of gum as well-so it was definitely a "break the rules" kinda day.

CT scan in the morning...oh wait-it IS morning, I am up late and wanted to update before I went to bed. Please pray for all to go well for Connor. It is a tough day for him-hopefully good news at the end. He cant eat, has to get an IV and we have to shove contrast down him slowly for TWO hours with a medicine dropper before he gets sedated.

If he doesnt cooperate-he gets an NG-tube put down his nose. If the nurse misses, he gets the NG-tube AGAIN. I hope he can get it down by mouth.

Then off to his doctors-hopefully get the results and then need to decide on what treatment he is getting tomorrow.

He is on the schedule for Rituximab-a chemotherapy that targets only B-cells which are believed to be one of the cells that cause his immune system to go crazy on his brain. It is a scary infusion...please pray for his safety and for him to not be scared. He has to have his port accessed for this one, so it is a day of pokes for him...he might end up just doing IVIG tomorrow-not quite sure yet.

Ryan, Stacy, and Samantha are off at Aunt Laurie's house for the night...they have all been busy as well! Ryan was super busy with the school play for a couple weeks (he was on the tech crew as the "Spotlight Man" AND he started working Wednesday nights at the restaurant. I am so proud of him! Samantha got her ears pierced a few day ago and is just so excited about them she can't stand it, lol...and Stacy poor thing, is a nervous wreck over the CRCT testing-she takes after me for sure with her worrying. I know she will do well though, for her sake I hope the testing goes FAST.

More later-better get to bed!

Deb

New Link for Video...

2009-04-07T01:37:00.002-04:00

Here is a new link (ETA more children) for the 2009 video made by Tara Woodman...totally worth taking the time to watch. Thank you Tara for all the hard work you put into this project!

FACES OF CHILDREN ACROSS THE WORLD FIGHTING OMS AND NEUROBLASTOMA. PLEASE WATCH THIS VIDEO AND PASS IT ALONG.

http://www.youtube.com/watch?v=9WNdquhWdkA

Lots going on here-gotta go take care of Mr. Connor though, he is awake again...PLEASE keep him in your prayers as he is still not himself and is having so many difficulties right now. Call is in to the doctor for the next steps to take.

Love,
Deb

Brand New OMS Video 2009 "Our Hope Endures"

2009-04-02T02:23:00.004-04:00

My friend Tara has been hard at work on a new video of our kids and their struggles with Opsoclonus-Myoclonus Syndrome. It turned out beautifully!

Here is the link if you want to check it out. The song on it is so moving. It is called "Our Hope Endures" very fitting for what all of our families are going through. I hope ya'll take a lookie...

http://www.youtube.com/watch?v=RKRzblX5pwA

"Tough Guy"

2009-03-28T22:45:00.002-04:00

Yesterday was a long day (as all Atlanta clinic days are) but Connor did amazing for us once again! Even MORE amazing is that his mood has been dreadful from the early dose of steroids this week, given without his pre-meds to help even out the side-effects like rages, but he still managed to be cooperative at clinic for the Cytoxan.

His regular nurse Rebecca wasn't there-but he handled the new faces well...We needed a urine sample prior to chemo being given, and he had me and Sam cracking up in the bathroom. Eventually we succeeded in getting the little cup filled-our big boy sat on the potty and when I saw my chance, I took it and got what was needed. He looked at me like, "WHY are you doing this Mama?" :) For a little guy who JUST started sitting on the potty, we were so proud this didn't make him never want to go again, lol.

He detached himself from his nausea medicine-thank goodness it wasn't the needle in his port that got pulled out-just the connecting tube. Got that fixed up and we were on our way. He played, walked around, and ate lunch-all while the Cytoxan was being pumped into his little body. I hate that he is going thru this again, but I am happy to report his eyes are already much better-if not completely better! The steroids had already settled things down quite a bit, but they aren't holding him over long enough between doses...we still don't know how many, if any, more doses of this type of low-does chemo he may need...but we will be keeping a close eye on how his movements are doing.

His doctor does want to proceed with repeating the other chemotherapy treatment (Rituximab, the one that targets B-Cells) very soon. He said it needs to be at least a month apart from this chemo, so probably this summer sometime. So far now, we just watch and wait.

I woke up to Connor throwing up beside me at 6 am this morning, poor thing was doing so well until then. The nausea medicine does such a good job, but I sorta expected him to get sick at some point. The first two days are always the hardest on him.

Day by day his mood is improving, we hope to have a happy, healthy Connor back soon. This has been particularly hard on the other kids-seeing him doing poorly, and then watching him rage on the steroids, then the traveling and them staying off the night before so we could leave very early, and seeing Connor so sick. I am always amazed by their deep love for their baby brother-I honestly think any one of them would do anything to take away some of his suffering if they could.

Tonight I took Connor to my mothers house (Ryan and Stacy ended up staying over) and I noticed he was looking at her refrigerator and pointing and getting all excited. Then I saw what was making him so happy-a tiny magnet with the logo from his hospital in Atlanta on it! (a boy and girl holding hands in red and blue t-shirts and under it says "Childrens Healthcare of Atlanta")

It broke my heart-most kids get excited over seeing their favorite character or a McDonald's-but Connor is so used to going to the hospital, it made his day that he recognized HIS hospital...he has really grown up there and seeing him do that just made me sad for him that this is his "normal"

Please keep Connor in your prayers, especially for his upcoming CT scan on the 14th of April. Praying always for him to stay NED (no evidence of disease) and for the effects of the chemo to have the leat possible side effects, while doing what it is supposed to do-keep his immune system from attacking his innocent brain.

Love,
Debbie

More treatments in Atlanta tomorrow

2009-03-26T21:00:00.002-04:00

Going tomorrow to Atlanta...the doctor called me today and we had a good talk about the pros and cons of each medicine. In the end we decided that the Cytoxan has the best chance of stopping this relapse quickly. We will also probably do the Rituximab when this one is finished since we had such good cognitive effects from it last summer.

Not sure yet how many treatments he will have-but please keep him in your prayers for the least possible side effects and the BEST possible results.

Gotta be there at 8am, so the kids are spending the night at Aunt Laurie's tonight. (thanks La)

It is lose-dose chemo, so he shouldn't get too sick from it. Last time he had about 2 rough days of nausea...hopefully the Zofran will be enough to keep it under control.

It has been tough around here-he is just a mess from the steroids. Uncontrollable, fitful, crying, sad, mean, tired, it goes on and on. Usually he has the Zyprexa on board before he starts the steroids, which help counteract the side-effects. This time we started them sooner and unexpectedly-now we know how much of a difference the anti-psychotics make with the steroids for him.

I'll update as soon as possible and let you know how he is doing-pray for relief of these eye symptoms specifically please...Also, Connor's OMS buddies Travon and Jymani aren't doing well either, Jymani is in the hospital and Travon's family is battling to get their insurance to pay for his medicine he needs.

Love,
Debbie

Connor is not doing good...

2009-03-25T00:51:00.002-04:00

It looks like he may be having a relapse of his OMS symptoms.

His eyes are moving uncontrollably (the opsoclonus) This is not good-it is a sign that more damage is occurring to his little brain. I emailed the doctor last night and I am about to send him a video of Connor this morning and his eyes. Hopefully he will have some good ideas of where we should go next...

I can't stand seeing him like this-he can't watch TV (he hasn't for a while now) and my nerves are just shot from watching him like a hawk.

Edited to add:

I heard back from the nurse and she said his doctor said to start his steroids now instead of waiting til April 1st. And he is looking into what to do next. Then the nurse said he wanted to know if we wanted to move his scan up closer-so I asked is he thinking the tumor is back? And it was obvious he thought it might be a possibility...but I don't think that is what is causing this...OMS is just like this, tends to come and go and keep you on your toes.

Just heard back again...He is thinking about starting Connor on Imuran, low-dose Cytoxan, and/or repeating the Rituximab he had last August are the three things he is looking into. All 3 of these are chemotherapy drugs. Looks like we are back in the fight bigtime.

Please say a prayer for the doctor to guide us in the right direction. And for poor Connor to get some relief quickly from the eyes movements-it is obviously bothering him as he keeps rubbing his eyes after the jerks occur.

He was doing so well-he has had a yucky nose so maybe that is what triggered the symptoms to go from bad to worse so quickly. His doctor is taking this very seriously and we have confidence in him finding the right mix of meds to get us over this setback.

Love to all-
Debbie

Our clinic trip last week

2009-03-23T00:37:00.002-04:00

We had an VERY different trip to the hospital last week. Usually it is a high stress thing to go to clinic because even after all this time-Connor freaks out SO bad over vital signs and getting his port accessed. Actually-usually once the port stuff is over he does a bit better-but not much...

So we get there and Connor is pretty calm for a change...we get called back to the infusion area and it helps that his favorite vital signs nurse is there. Then-he cooperates! He held out his arm for the blood pressure, wore the thing on his finger for his oxygen level (BIGGEST step here-he HATES that with a passion) and (drum roll please?) got on the big boy scale AND stood next to the growth chart to get his height measured. Woo-Hoo!

He did great ALL day and barely cried for having his port accessed. I guess he is either maturing or getting used to it all. Which is good since we are in for the long-haul here.

Been busy with Relay for Life this week. Thanks to everybody who has donated on Connor's behalf. We can't wait to go again this year (May 15, 2009) Last year he was still so little-this year he looks like such a big boy.

More later...
Love,
Deb

"Welcome To Holland"

2009-03-22T02:37:00.001-04:00

I thought this was very inspiring and right on target about how it feels to have a developmentally delayed child...

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Snow in Columbus, Georgia!

2009-03-13T23:52:00.002-04:00

I wanted to post these funny pics (funny because we never get snow here in our part of the country) Almost never anyway-last time it snowed a significant amount was about 8 years ago. So this was Samantha and Connor's first time playing in the snow...Me and Samantha made this pitiful little snowman :-) But had a great time in the process! Connor is still in the middle of his "footie-pajama obsession" and decided to enjoy the snow from the inside of his little wagon since he had no shoes on, lol. He stayed out a long time though-Daddy wheeled him around the neighborhood and he stared in awe at all the pretty white snow.

I admit I have had a rough week this week...my schedule actually slowed down a bit for a change, but it seemed to only give me more time to dwell on worrying...never a good thing! Add to that what I will refer to as "The Nail Polish Incident"

(in case you are wondering what this is, come over to my house and look at our carpet) I guess I am a true optimist at heart-because my first thought was "It could have been worse"...

Connor is okay-he didn't drink it thank goodness, or pour it on the dog, what's a little carpet in the long-run? That is the good thing about facing childhood cancer and a rare condition like OMS-you don't get as upset about the small stuff anymore. Things aren't as important-people are. So if you come to my house and there is permanent marker on the walls, nail polish on the floor, and pictures hanging on the wall with no glass on them anymore, lol, you know why. Connor is in a scary stage right now-big enough to get into everything and curious enough to try! We cannot take our eyes off him for a minute-it is like a perpetual state of toddler-hood around here and THAT scares me more than the messes.

He is a soon to be preschooler and it is becoming more and more obvious how behind he is compared to other kids his age. We ARE seeing improvements though-he is understanding SO much more than even a month ago. Thank goodness!!! He has been able to follow short directions like throwing something away-or getting a diaper from his room. Little things, but they mean SO much to us.

We are about to be getting ready for Relay For Life 2009! Last year was a new experience for me, this year I feel better prepared as to what is involved. I'll try and post our pictures from last year again soon-Connor was so cute in his little "Survivors T-Shirt" and he looked so much younger than he does now-he still had his baby curls :)

Love to All-
Deb

New happenings...

2009-03-11T02:54:00.002-04:00

Last week I checked out a place I just heard about that does pediatric care for medically fragile children RIGHT here in town! It just opened a year and half ago, but they have centers all over the place, it is called Pediatria.

If it works out it would mean getting local or possibly even home infusions for Connor, instead of all the traveling we are doing right now to Atlanta. It is so hard, packing the kids up, juggling all the kids around the night before, and leaving at the crack of dawn (usually 5 am) and coming home late, picking everybody up, unpacking, it is just so hard.

And get this-they even babysit at the center! It is staffed by nurses and they take care of all the kids...it is like a daycare/hospital center. So I would have an option for a place to leave him if I need a break and not have to worry about them not being able to deal with him.

It was amazing! Bright, cheery, clean, open, nice nurses...big playground, indoor playground as well...

They have 11 kids there now and they are ALL on Medicaid or have that grant we are trying to get (Katie Beckett) so they were unsure about Connor since he has regular insurance. (doesn't that stink that they PREFER Medicaid to people that don't qualify? Agg! another story, lol)

The RN called me and said the my health insurance is okay with unlimited home infusions. I am so excited. She said once we (hopefully) get Katie Beckett that they will be able to provide more for us like the respite care.

Next hurdle-making sure the pharmacy we use to mix the meds is ok with our insurance-don't want to get stuck with that bill!

Other than waiting to hear from STEPS and doing speech therapy as usual-not much going on since we got back from Disney. It has been a quiet week for a change-Connor had a rough night last night (the first night off the Zyprexa is always a rough one) and kept us up most of the night. Me and Sam were zombies today.

Connor is pretty bloated right now from the steroids this month-and was extremely hungry this time as well poor thing. At his cousins birthday party last Saturday, he ran and got himself a fork and dug into the cake before we even got to sing Happy Birthday (sorry Erin and Adam)

Thanks for checking on us and keeping Connor in your prayers.

Debbie

Another little one...

2009-03-06T17:33:00.002-05:00

Cody lost his battle during the night. Please lend some support to his family...glad he is free of pain, but oh how his family will miss him. Just click on his name for his site.

The Test

2009-03-04T20:58:00.003-05:00

So we had the STEPS evaluation this morning. Much nicer atmosphere than the other neuropsych testing he had in January.

It was set up like a big playroom (playhouse, teeter-totter, trikes, developmental toys, etc...) And the people there were awesome (speech therapist, occupational therapist, psychologist, and a case worker)

Me and Sam did paperwork and answered questions at one table. Connor sat at another table and played with the 3 ladies. He liked that! Only problem was his attention span was so short even some of the stuff he can do-he wouldn't if he didn't feel like it. It took 2 hours for them to get the testing done.

It was depressing answering all the questions-as usual. So much he can't do and so many behaviors that show he is very delayed. But he did do better than in January-so I am glad he is improving. Now the waiting begins...We don't have the date yet of the meeting to discuss the results-but I will post when I know more. Thanks for all the prayers and well wishes-this stuff is so stressful on me and especially Connor.

We started his Decadron tonight-hopefully this will be a smooth cycle without too much pain. He was funny today-he insisted on wearing his Mickey shirt from Disney Wolrd AGAIN today, lol. 3rd time since Saturday! :)

Deb

All the latest

2009-03-03T22:34:00.004-05:00

Thanks for all the well wishes for our trip to Florida. It was amazing and so great to spend time as a family together. The twins had a fun Disney birthday last Saturday (I cannot believe they are 14!) Samantha was thrilled, amazed, and so happy to be there-made it all so special seeing her smiling face.

Connor was a bit overwhelmed. We forced him onto Winnie the Pooh and It's a Small World and then I couldn't do it anymore and we didn't make him-he was just too scared. OMG @the screaming! He did LOVE Mickey's Toontown and Ariel's Grotto thank goodness. He played in the water and walked through Minnie's house and loved the little play area there. We were also able to get him a special sticker for his stroller to be used as a wheelchair and he was able to "drive" right up to all the attractions and places the strollers aren't usually allowed. That helped a ton! Even though he didn't ride anything-he had a good time. He got soaked in Ariel's play area and a bit later we were in a shop and he reached out to grab a pair of Mickey Crocs, lol. He wanted his wet shoes off :) So I got him the little shoes and a firetruck he HAD to have and that truck kept him entertained the rest of the day.

We go in the morning for more evaluations on Connor.

It is his eval to see what services he will qualify for in the public school system. At age 3 they are eligible for speech, occupational, and physical therapy in school. But it is tricky who gets what and how often and for what hours.

We have been told since he is more severe he will get 3 full days (Monday, Wednesday, and Friday) with speech and occupational therapy once a week-but nothing is definate until another big meeting to discuss the results of THIS meeting in about a month and half-right before his birthday on April 26th. Whew! They are keeping me hopping!

There are going to be so many people there tomorrow I am afraid it is going to freak him out. And he is supposed to sit with THEM at one table while me and Sam are at another table farther away. They will be using six different tests to score him on-and them averaging them together. This is good because he might not do good on one method of testing-on something he actually knows how to do, you know?

So I have stayed busy with the trip, still dealing with our insurance company over speech therapy for Connor, Samantha got her cast off (yeah!), trying to get all our paperwork together for the medical grant, the house, the dog (who got sick at the vets while we were gone) speech therapy and playgroup, ballet lessons, and various other tasks, lol. Too much! But I like being busy so things are good.

Round 8 of Decadron is starting-I am hoping it is a smooth week-even with the steroid rages and aches he gets. He is handling it better though on the Zyprexa and the Motrin and Vicadin always help out.

We miss all of you-our real life friends and our internet buddies. You will never know how much ALL of you mean to us.

Braedon is hanging on Praise the Lord, Deqlan had clean scans (Go Deqlan!), Makhi is in Springfield and we hope to hear good news by this weekend, Travon has been experiencing more OMS symptoms lately and needs prayers as well...you can read about all our little friends if you go to the "Check it out" section. All these soldiers need our prayers for good health!

As some of you know-our restaurant caught fire this afternoon. All is okay-thanks to the firemen who responded. Thanks for the calls and we hope to have it all running smoothly quickly.

Love,
Debbie

Playing Catch-up

2009-02-19T20:09:00.002-05:00

Home sweet home! Can you tell I am glad the Atlanta trip is over with? For a bit anyway...long day, but Connor stayed sweet through most of it.

Lots to discuss with the doctor-Connor had his exam, started the infusions, we met with our social worker about our paperwork for the Katie Beckett waiver, and got the last bit of paperwork that the school system wants. (that Connor doesn't can't finish his vaccinations for medical reasons)

Whew! Feels good to be marking things off my list.

Connor was zonked on Benadryl for quite a while. Poor guy was tired from being woken up so early.

Not much news from the dr. He might move the IVIG to every 3 weeks instead of every 4 depending on this next month and how his walking goes...he also thinks we might be repeating the Rituximab chemotherapy in May maybe-not sure when exactly yet. He ordered some extra blood work that we are waiting to get the results back from still...

Got things set up for next months CT scan-it has been SIX months since the last one, hard to believe. Please keep Connor in your prayers for a clear scan with no new tumors. It is always so difficult for Connor on these scan days...so maybe some extra prayers for him to do well with the prep beforehand and the sedation as well. He HATES drinking the contrast-we have to force-feed it to him slowly for two hours with him screaming and fighting with all his might. :( These poor kids and what they endure-it is so hard to watch.

We are going to have quite a string of trips coming up (about every two weeks) to Atlanta-but even though the driving is a pain-I am thankful that we at least have the doctors close by. Better than flying every month, huh?

Next week I have to take Connor for his STEPS evaluation. This determines the number of days he will attend school and also the amount of services he will receive while there. We are keeping our fingers crossed that he will qualify for at least 3 days per week-preferably at Samantha's school. (pray) It will take a while to hear back though-probably 60 days or so.

Deb

Busy, Busy, Busy...

2009-02-16T20:07:00.003-05:00

WOW-one small word to try and sum up all the craziness we have had lately. The good kind of crazy though-just super busy. Errands and appointments every day have made computer time very limited (okay, non-exisitent, LOL) This week is a bit slower...a trip to Atlanta for Connor's infusions is set for Wednesday-but nothing out of the ordinary.

Our little friend Travon had a story published in his local newspaper about him and his struggle with OMS. I was thrilled to see awareness spreading by the article! Check it out HERE if you want and see Travon and hear his families story.

Connor has had some progress with speech the past couple weeks. He is now saying a few more words (although very garbled) The newest was today in the car Samantha was telling knock-knock jokes, and Connor began knocking his hand and saying "Na-Na" He was trying SO hard to get the whole word out, but that is all that would come. We all cheered for him and I called Sam right away to share the good news with him. He also has been saying Ut-oh very well a lot and began adding the "dee" to the end of Daddy (instead of just Da) Wow is another new one, although that one comes out as "Owww" :) He is making progress though, thank goodness for that and we are so grateful for the prayers that have made this possible.

Samantha is doing great with her cast-not letting it slow her down much at all! Look closely at the picture below and you can see her pink and purple striped cast. This is a pic of Samantha and Kate (her best friend for half her life) on Valentine's Day. Next week she is the star student of the week and I have a feeling she is going to be toting her cast collection to school to show her friends...how sad is that to have a collection of casts at 6 years old? LOL Hopefully this is the last.

I'll try and do better on the updating...I actually have quite a few pics I want to share from the past few weeks.

Love to all!
Deb

Looking back...

2009-02-09T02:47:00.002-05:00

I was looking back at some Pre-OMS pics tonight and came across these pics of Connor a few months before he got sick. He was so bright eyed and healthy, we sure didn't know what we were in for...

We had a good weekend, getting ready for a busy week. Lots of errands, appointments, and tons of driving (story of my life!) therapy, ballet, open house for high school, playgroup, and all the usual happenings-whew-it is going to fly bu I bet!

Good news for Ryan and Stacy-they got into Columbus High School! This was their #1 choice and they worked their butts off to get in-we are so proud of both of them. They are so excited and I know they are proud of themselves too...

Also some good school news for Connor-he is definitely going to be going to regular preschool at least 2 days a week. :) The other days he will be in STEPS at Blanchard most likely. But we are psyched about him getting a chance to be around regular kids and learning from them.

We are going to Disney World in a couple weeks for the twins birthday. We were sort of avoiding making a trip there-afraid of being disappointed by Connor's reaction. He is afraid of most rides, and might have trouble walking, etc...but we are going to take the plunge, for the rest of the kids sake, and I think Connor will have fun looking at everything, even if he does sit in his stroller for most of it. hopefully he will be doing well enough to be up and walking (pray)

Love,
Debbie

Where do I begin???

2009-02-05T21:03:00.002-05:00

A lot can happen in less than a week I learned. Samantha broke her wrist on Sunday trying to climb over a baby gate :( (it was almost exactly three years ago that she was in a long arm cast after a fall running around with her cousins) This time she has a pink with purple stripes SHORT cast (much easier!) and is feeling a lot better after a tough start to her week. Still in some pain-but going to school like a trouper and not complaining at all! Poor girl-she is so tough, and I am so proud of her.

Connor finished Round 7 of Decadron well. He did good on the Zyprexa with his mood swings-still had problems, but much better-and his pain was controlled fairly good with meds as well. He is still walking (yeah!) and is now back to his pleasent non-steroid-self...I am keeping close track of when he might begin having trouble walking to see if it relates in any way to his IVIG infusions. This will determine if he needs a higher dose or an infusion more often instead of monthly.

And some good news...

We were leaving playgroup today and I told him to say bye (expecting him to wave) and he said "Bye" It was a little garbled, but it was obvious what he was saying.

My jaw dropped I was thinking, did he just say bye? I am STILL in shock. After all these years-he said it finally. Thank you God!!!

His appointment in Atlanta yesterday at the eye doctor is over with-now we have ALL the paperwork we need to turn into the school system to get him evaluated for the STEPS program. His eyes were in great shape the doc said...

Doesn't sound like the school we were interested in for Connor is going to work out-long waiting list and it is primarily beneficial for the kids with autism as I was afraid it would be. I was disappointed, but I have a new plan of action, lol. We are going to see what the school system offers him and then put him in regular preschool the rest of the time. (I hope) I don't know if we will need to provide an aide for him there or not...I'll let ya'll know what we find out.

Deb

Wedding Fun

2009-01-31T20:22:00.004-05:00

Here are some pics from my BIL and new SIL's wedding last weekend. Sorry I don't have one of them together (coming soon I hope) but my camera decided to misbehave that day (Agg!) Samantha did an awesome job as flower girl and the ceremony and reception were so beautiful. Stacy & Ryan were wonderful as well, not always easy at a very long reception, etc...they hung in there and had fun too.
This was about the last time Connor put clothes on this week-he has decided footie pajamas are the in thing right now and is refusing to get dressed at all. :( We haven't been forcing him since it is steroid week and we know he is hurting from all the joint pain he gets-heck, I'd probably wanna wear footie jammies too if I felt as bad as him, lol. So if you saw us this week and thought it odd the way he was dressed, that is why. Hopefully tomorrow he will feel like getting dressed...
Right now we are just enjoying the weekend and preparing for a busy week ahead. Another trip to Atlanta (I know, ANOTHER!) for Connor's eye exam-yet another requirement for his entrance into the STEPS program here in town. We are in the process of tryingto find the best possible school to send Connor to after he turns three. It is difficult because there just are not many options around here for special eduacation-either the public school system or a couple other possibilities. One of which already rejected Connor because he does not have autism-their specialty. I am going Tuesday to tour a "potential" school for him-but as of right now, nothing is known or decided.

Keep praying,
Deb

What a Champ!

2009-01-29T01:07:00.003-05:00

Connor has had a really tough week so far...just extra cranky, with a destructive quality along for the ride as well. Not sure why-who knows, maybe he is just bored since we have been home a lot this week. (Samantha missed Monday & Tuesday from school with a cold) He has been great though about taking his pills, and also eating well, walking, and doing quite a bit of sign language. WTG Connor!!!
Thursday is a busy day again-speech therapy, playgroup, some errands, and lots of driving. The pic above was taken at the clinic last week-he was hamming it up for the camera, can you tell? :)

Love,
Debbie

Some Birthdays Comin' Up

2009-01-28T01:17:00.003-05:00

Look who is turning the big ONE next month. Oh-how the puppy days have flown by! Belle is still a handful-but a sweet one (most of the time anyway)

Also, Ryan and Stacy are going to be 14 on Feb. 28th! So hard to believe they are getting so grown up. When did that happen?

Connor had a good day today. I didn't-but it happens, you know? I think I am to a point that I feel like putting a sign on Connor so people will quit asking me what is wrong with him...it has gotten really hard to go out without incidents arising every time. I don't mind explaining his condition at all-in fact, watch out, I might talk your ear off, lol.

It is the thoughtless remarks that are bothering me. He is a beautiful child, and we love him for who he is right this very moment-and that will never change. I see confusion, fear, and pity in people's eyes when I wish they could just see what I see...Connor. As he is, imperfect in some eyes, but still as much of a blessing as any other child-maybe more.

Maybe this is a good reminder to folks to try and see the child-not the disability. Look in their eyes, smile, just don't stand there and ask me when is he going to talk or what is WRONG with him in a way that implies that he is "damaged goods" or bad in some way.

We appreciate all the love, prayers, concern, cards, calls, and most of all friendship through all this. I hope this doesn't offend anyone-most everyone has been wonderful to us. I never knew such kindness before-from the men at our church who pray for Connor everyday, to the strangers who hold doors open for me as I struggle to tote an almost 40 pound toddler who can't walk off and on. I just want him accepted for all he IS-not looked at for all that he isn't. (Yet)

I might have some exciting news to share soon about something I am looking into for Connor. I'll share more when I know more-don't want to jinx it (hee-hee)

Love to all and thanks for checking on us,
Deb

He's walking!

2009-01-27T01:09:00.003-05:00

After his treatment last Wednesday in Atlanta-Connor started walking again on a much more regular basis. I am keeping a careful log of his treatments and walking vs. crawling-so we can get a better idea of how he is doing. It seems the IVIG is REALLY helping him more than we knew since he had his infusion and within hours started walking and now five days later-still no crawling! :) What does this mean? Well, possibly longer or more often treatments? We have no idea, but it sure is nice to see him on his feet. Even at his usual crawling place (playgroup, Nini's house, etc) he has been doing awesome. Also, walking in parking lots again and the yard thank goodness.

Not sure how long this will last...he started back on the Zyprexa today and Wednesday is the next Decadron cycle. Please keep him in your prayers for an easy time with it-it is so rough on him to be taking these steroids.

We have been busy celebrating my BIL's marriage to my new SIL Magdalena! The wedding was beautiful and we had a blast. (Pics to come!) My camera decided to go batty on me and take fuzzy pictures, but I have a few good ones to share. Samantha was a doll as the flower girl and enjoyed every minute of it-well, except the hair pins maybe, lol.

Stacy & Ryan are still waiting to hear if they got into Columbus High or not (pray) The next round of tests for them will be the 21st of Feb at Hardaway. Maybe we will hear good news before then and they won't need to go? :) Hope so! We are also planning a trip to Seaworld around that time, so it would be nice if it was a celebration vacation, right?

Sorry for the lack of updates, just too busy with little guy to get on the computer much...also, with paperwork for STEPS, Katie Beckett, the insurance, appts.,etc...it goes on and on.

I checked out Braeden's page earlier and he is still hanging in like a trooper. Stop by his page if you can and leave his parents a note, they are suffering so terribly right now. So many prayers for this precious boy, may God hear them and ease all of their pain.

Love,
Debbie

Our OMS friend needs prayers....

2009-01-18T03:40:00.005-05:00

Hi to all who come here to read and check on Connor. We love you and want to keep you posted on another little boy's struggle that is getting harder and harder for him. His name is Braeden and he is 3 years old and he has OMS like Connor and so many of Connor's online friends-but his neuroblastoma is stage III , high risk and not much is left to do, but send our prayers for peace for Braeden, and strenghth for his family. Here is the latest blog entry on Braeden's condition.

"Hello friends and family, I know you all have been anxious for an update and I am sorry for the delay, it's hard to write it this time. I am sorry to have to tell you all that Thursday's CT showed no real change in the tumor, and Braeden's blood pressure has gotten worse. It breaks my heart to say that at this point there is nothing more we can do than work to keep him comfortable and keep him feeling well and happy for whatever time we have left. He had the nerve block done yesterday, and will have the ablation done Monday (to kill the nerves permenantly). This will hopefully keep him pain free without the epidural. We are working to get back down to the 7th floor and hope that will be early next week. Yesterday the big kids were up and Braeden was happy, talking, and playing with them. It was great to see.

I want to share with you a verse that has been special to me these past months. Hebrews 10:23 says, "Let us hold fast the confession of our hope without wavering, for He who promised is faithful." God never promised us this would be an easy journey, only that we would never walk a step of it alone. He as been with us all the way, and through you all we have seen Him daily. You have been his hands and feet and we are blessed by you. He also promised healing through His Son, either here on earth or in heaven with Him. Braeden will be whole, he WILL be healed, and he will be happy.

I will post more about visiting in the days to come. We appreciate your patience and understanding. Also, please continue your prayers. Pray for the hearts of all who love Braeden, that God would heal them, and pray for continued strength for us. God bless you all."

God Bless You Braeden...What a fighter you are and so brave too! So many people are praying for you because you are so special-not just to your wonderful family, but to all of us whose lives you have touched with your sweet smile and courage you have shown in all you have endured. We love You Braeden!

Debbie

Please pray for Braeden...

2009-01-09T21:15:00.006-05:00

I have continued to add to my list of links on the right side of this page of all the kids I can find fighting OMS (opsoclonus myoclonus syndrome) Some of them have also had to battle neuroblastoma and its own set of difficulties. Recently I heard about a little boy named Braeden Burgess, who is battling OMS along with Stage III high-risk NB. His family could really use some extra prayers right now, as Braedon is not doing very well. Here is the link to his page so you can meet this gorgeous little boy.

www.carepages.com/carepages/BraedenBurgess

Today was a busy day for us-just running errands and getting ready for the weekend to start. We have so much to do over the next two days! Tree has to come down before Connor officially kills it, lol (it is an artificial tree, but it has taken some severe abuse) :) Along with cleaning out the garage and hanging some shelves in the playroom-not much else planned.

Ryan and Stacy are beginning their own battle-getting into high school! It sure feels like a fight anyway, with all the applications and testing coming up. So this weekend is for filling out paperwork and next weekend the BIG TEST! They both have their hopes set on getting into one particular school and it is going to be devastating if only one of them gets in. So please, if you can spare the prayers-maybe one for them that they BOTH make it in? It is SO competitive, and hard on such young kids if they get rejected.

Love,
Debbie

Providence Canyon Trip...

2009-01-08T21:25:00.004-05:00

On New Year's Day we went out to Providence Canyon. It was freezing cold, but me, Sam, Connor , & Samantha still had a great time. We went last year and I guess now it has become our New Year's tradition. It is such a cool place with beautiful scenery. Connor spent most of the time there in the stroller-but he did sneak out of it for about a total of 5 minutes! :) Here are a few pics of our day.

Thank you to everyone that has called and sent sweet and supportive messagages to us after our rough time the other day. Poor Connor had enough of the questions I guess, because ever since Tuesday, when I ask him where a body part is-he shakes his head and refuses to answer! LOL I guess they got on his nerves a bit? Haha, made me laugh anyway and I needed that.

Love to all,
Debbie

TEST DAY

2009-01-07T01:11:00.002-05:00

We got there this morning and Connor was being an angel. Sitting in his stroller (his "safe" spot) and they finally called us back. We go to a VERY small room.

STOP HERE! Just so you know...I was picturing a big playroom and the doctor playing with him and getting to know him, and through this play he/she would see what a smart, funny, and kind-hearted kid Connor is then Connor would be scored according to how well he understood/performed tasks. Not a great score-but not an awful score either.

NOT HOW IT WORKS is what I found out. This is the real world. Doesn't matter if you are sweet and nice-it just matters if you understand the stupid test.

The doctor is incredible. Probably the nicest man working with kids I have ever met-funny, patient, gentle. Connor loved him! As we entered the impossibly tiny room, I got my first twinge of panic. What are we doing in here? How can they possibly expect Connor to DO anything in here but to try and escape? (Picture large bathroom with a desk and few chairs)

The plan we are told is that Connor will sit on one side of the desk and the doctor will ask him different questions. He doesn't have to speak for these questions-he can point, touch, show, gesture towards, etc. It only takes the doctor a couple minutes before he gets a puzzled look on his face and he says, "This isn't going to work."

You see, Connor doesn't really know how to answer anything, he might smile at you or do something funny-but those were not the kind of "answers" the doctor was looking for. He isn't able to look at pictures and show you where anything is, or books, or even things in a room. Then the doctor tried to ask Connor his body parts...That was hit/miss as well. Okay-mostly miss. He did get nose right, but Connor can't help it-he just gets them all mixed up. He seems to know that parts of your face are called SOMETHING-he just has trouble remembering what it is for each.

I was given a long form (10 pages front and back) to fill out while the doctor continued to try and get Connor to respond to anything really. He was mostly just killing time because he had already called for reinforcement from another doctor to come administer an easier version of this developmental testing (the infant to toddler version instead of the preschool one) Connor succeeded in stacking some small blocks During this time I was asked about his speech therapy history and other questions about what he can and cannot do. Eventually the other doctor arrived.

Another nice doctor-SCORE! At least Connor is liking both these guys he is supposed to impress, right?

Here is where it got depressing for us. Right away the doctor was confused why Connor wasn't used to sitting at a desk for therapy type play. He was told Connor had been in speech therapy for over a year. Yes, I told him that he has been-but that it is not a desk setting. It is at home and the therapist follows his lead on what to play with and she gives me instructions for what to work on with him until the next visit. That is how the program works in our city. It sounded lame even to my own ears. I don't fault the program Connor is in-his therapist loves him and fights for him to get more time with her...but most kids are seen every two weeks and for 30 minutes. Just long enough to give directions to mom on what to work at home-so in a sense-it is more like training the mom than teaching the child. Connor is one of the lucky ones seen every week-but even this hasn't been enough to truly help him reach a more functional level for his age. It is impossible under these brief sessions to accomplish very much.

So now that the doctor realizes Connor is new to this way of doing things and not the experienced pro they thought he was, lol, he decides to let Connor get comfortable and start over with a new approach. This time Connor is sitting on Sam's lap and the doctor is able to get through a few of the tasks he needs to rate Connor on how well he is able to do it. He is going to show Connor how to do something, and then see how long it takes (if ever) for Connor to do it on his own-then he scores him. Here are some of the tasks Connor had to do-there is no way I can remember them all-but some of them surprised me that he could do and some of them surprised me that he couldn't...

-Stacking blocks
-Stacking cups
-Draw a line with a crayon on paper
-Open a book and flip the pages
-Unscrew a toy bolt from a screw
-Put penny's in a piggy bank (two directions)
-He laid out some simple objects on the table for Connor. He had matching ones on his side. He would hold one up (a key for example) and tell Connor to show him his key. Then he moved on to the other objects to see if Connor could do them.
-Body parts again (several different ways) When Connor didn't answer where his hair is-the doctor pulled out a brush to see if Connor at least knew WHAT to do with the brush. Body parts on a stuffed animal...
-Show me ______ . (Connor was supposed to point/gesture towards object)
-Two cups. Put a block in one and a spoon in the other. Then he would give Connor either a block or a spoon and see if he would put it in the right cup with the same object.
-Shoestring and 3 large beads with big holes. He showed him how to lace it and Connor had to follow.
-Ball and a cup. Connor had to toss the ball into the cup after the doctor showed him.
-Steps...if he could go up and down steps.

Connor was able (eventually) to do all these tasks-except stacking the cups and those darn body parts.

Anyway-you get the idea...there was no time limit and the doctor repeatedly showed Connor how to do something if he couldn't. When all was said and done, Connor measured 2 years behind. TWO YEARS! The final report will say more and his understanding is that of a 22 month old-but his speech is so very far behind.

The doctor seemed saddened and appalled at the lack of services Connor is receiving with this severe a delay. He also pointed out that it should be looked upon as a rehabilitation, instead of a delay, since he had so many of these milestones before he got sick. He said he would qualify for occupational therapy as well-but since he so desperately needs the speech therapy more, that we should concentrate on getting him as much ST as possible. He even recommended 5 days of ST per week. Funny that our insurance won't even pay for ONE session!@##

So that is where we stand-EXACTLY where I knew we were-it just felt different and sad hearing it again. I was so proud of Connor for all he WAS able to do today, six months ago he wouldn't have been able to do any of it. So I will keep counting these small blessings and just enjoying EVERY minute with him. How could we not? He is our joy.

So proud of our guy...

2009-01-06T20:32:00.003-05:00

Connor had his neuro-psych developmental testing done in Atlanta this morning. Good day for him (no pokes!) Very nice change from the usual routine. :) I don't want to go into to much detail until the final reports are in on this mornings events (should be about 30 days until we get everything back) but it was about as we expected, maybe a little worse. Just so hard to hear, and type, things you don't want to be going on with your baby...Our guy is very behind as we already knew, but as you can imagine-we are still having trouble with the "accepting area" of all this. Hearing (and seeing) with our own eyes, as he struggled to do simple tasks, was heartbreaking to watch. All we can do is continue to love him, pray for him with all our might, and enjoy him. Oh-and a bit more...

Tomorrow begins our battle with our insurance company over getting coverage for Connor to begin new therapies locally. Also, today was step one in our fight to try and get Connor covered under something called The Katie Beckett Waiver. This waiver enables severely disabled children and adults to be cared for at home and be eligible for Medicaid based on the individual’s income and assets alone. Without the waiver, the income of legally liable relatives is counted when the individual is cared for at home. In other words-if you make too much money to qualify for Medicaid-you might qualify for this...but it is VERY tough to get approved, and some families are turned down several times before being approved. But if we do get this waiver-ALL of Connor's bills not covered by our insurance would be covered. This would be a huge blessing for Connor, he would be able to have as much therapy as he needs-and as recommended for him by his expert team of doctors, instead of by an insurance company who doesn't want to pay for any therapy at all...

Thanks for checking on us. Please keep praying for Connor to do well-that means more to us than anything.
Debbie

Sorry no new posts...

2009-01-05T05:38:00.002-05:00

I caught a bad cold and haven't been able to be on the computer much...but check out the slideshow above of our December fun if you get a chance. It has music-so you might want to exit blogger after you open smilebox. More later! Hope everyone had a wonderful new year.
Debbie

Almost 2009!

2008-12-29T01:02:00.003-05:00

Can you believe Christmas came and went so quickly? The little ones had a ball with all the new loot in the house, especially Samantha with her Leapster Learning System and Connor with all his new choo-choo trains. Last night me and Sam got his train table all put together-I'll try and get pics up really soon of Connor playing, he LOVES his new toy so much! Samantha also had her REAL birthday and is thrilled to have her own camera. I am not quite sure what she is planning on taking pictures of, lol, but I'll post those too when she does. :)

Connor is doing pretty good. He has a bad diaper rash right now from a tummy bug he had a couple days ago, and he still is avoiding walking certain places...He started his pre-meds before his steroid dose this month and we are hoping he does well with them again.

It is looking like we are going to stick with the current meds for a 3-6 months longer than planned (I can't remember if I posted about this already) So this will NOT be the last cycle of steroids. I am happy with this decision, especially since he is doing so well on this plan.

I hope everyone had a Merry Christmas. Please keep our friend David in your prayers, his mother past away early Christmas morning...We are thinking of you David and sending you our love.

Love,
Debbie

Merry Christmas

2008-12-25T00:39:00.003-05:00

Yep-Sharing old pics again, but this time I have a better reason than just not having new ones to share ready yet, lol. The Christmas Story always reminds me of when I was pregnant. Here I was with Samantha in December 2005, the Christmas before Connor was born, and we had just found out we were going to have a baby boy! I guess I get nostalgic at Christmastime about being pregnant, since I was pregnant with ALL the kids during one Christmas or another. Also, thinking of Mary, heavily pregnant on a donkey with no place to go-my heart just hurts thinking, "If they only knew what gift she carries?" So that is the reason for my old pic tonight...

Tonight we had Christmas Eve dinner at my mothers house and exchanged family gifts. It was so much fun, although quieter than usual without Ryan and Stacy home. (Miss you guys!) Connor loved his cash register and other gifts! Samantha loved all her presents and just hanging out with her family. I was able to enjoy a glass of wine-this is the first Christmas in a longgg time I haven't been pregnant or nursing for about 6 years! :) Don't bother doing the math-yes, they both nursed quite a while, haha.

Connor is doing good, still avoiding parking lots, not walking as much as normal-but more than last week thank goodness. Thanks for all the prayers! Hospital was smooth yesterday-infusion went well, and we don't go back to Atlanta until the 6th of January.

We are working on a new "plan of action" with Dr. George and it looks like we are going to stay with the Decadron for a while-but not past a year. We are about to hit 6 months, so that means we are at the half-way point if we do a year of this steroid. After a year, the risks start to go WAY up for osteoporosis and other bad side effects to set in...anyway-this gives us time to figure out the best plan for Connor after steroids.

Connor got to see Santa at the hospital which made his day! Santa gave him a cute little truck to take home. It is amazing to see the people at Scottish Rite who go out of their way to make a difference in these kids lives. "Santa" was from the fire department with helpers from the police department as well. They had TONS of gifts loaded up for all the kiddos stuck at the hospital at this time of year. It was just heartwarming to see SO many people making a difference by trying to make someone else a little happier.

Merry Christmas to all our family and friends! Thank you so much for all the support you have given us. You guys are the special people in our life that make a difference every day-not just at Christmas, by loving and praying for our Connor and all of us to make it through each day and each new challenge. Love to all of you and many blessings for 2009!

Love,
Debbie

"One-of-Those" updates...

2008-12-21T02:16:00.004-05:00

Wanted to let everyone know that Connor needs some extra prayers right now. He has had some set-backs creep back up on us...slowly (just slow enough for me to try and hope it wasn't really happening)

For the last month he hasn't wanted to walk in parking lots. Then, he stopped walking in our front yard. Which was a HUGE thing, since his favorite activity is playing outside. Now he doesn't want to play in the backyard either. We think he is having some shakiness in his legs and just a general unsureness about his balance, making him scared to walk outside.

Tonight he wanted to go for a walk very badly with his doggy Belle, but instead of just coming with us-he headed to his little wagon we keep in the garage and just sat there and waited for me to come and pull him...Anyone who knows him in person knows this is completely NOT like him. :(

So, Samantha walked Belle and I pulled Connor along in the wagon to see the Christmas lights. He had fun seeing the decorations, but made no move to get out and play.

There have been other little things too. Lots of stroller time-yesterday at Samantha's school Christmas party I knew I better bring the stroller-not just for his sake, but for mine. He is getting pretty heavy to be carrying long distances-like all the way from the car, to her classroom, and stopping to check in at the office, while holding lots of bags. He was quite content to ride along, but I was happy he did get out and stand near Samantha during the party.

We also went to The Landings to see the Clydesdale Horses that came to town-and Connor stayed in the stroller the WHOLE time. Again, not like him...in between all of this, he is spending lots of time crawling at home.

Hopefully, Tuesday's IVIG and the next steroid treatment will get him back on his feet again full-time.

Ryan and Stacy made it safely to the wintry northwest a few minutes ago. Thanks for all the prayers for their traveling safety-it seems it is much needed with all this crazy weather! :)

Please keep all the little children with OMS in your thoughts and prayers this holiday season. So many are suffering, and there are just so few clear answers on how to help these kids.

Love,
Debbie

"Who were we kidding?"

2008-12-16T00:50:00.002-05:00

Tonight I was browsing through some pics from this time last year (note above pics) I guess feeling thankful of how far our boy has come in these past 12 months-when I noticed something for the first time.

Connor was missing quite a bit of hair and we didn't even know it! :) How is that for blissful ignorance? I knew I had an incredibly hard time fixing his hair each day, but for some reason, I remember excusing it to his curls-that they must be curling up and leaving bare spots...so I would slick it down with his baby brush again and again, lol. "Oh no-it couldn't be the chemo making me see his scalp!" It is funny now-but I guess we were so glad he still had hair at all, that the thinning just went by unnoticed until now.

He had a good day today-his mouth problems seem much improved lately, so thank you to all for prayers sent on his behalf-they are working! :-) His appetite has improved and he is feeling well. He is VERY excited about all the Christmas decorations around town, his favorite part of the day is driving in the car, so he can see all the lights and trees.

Much Love,
Debbie

"Fun in the Tub"

2008-12-15T01:26:00.002-05:00

I snapped these of Connor a few days ago when he was having a great time just splashing around in the tub. It was a real surprise to actually catch a genuine smile on his face! :-)
The weekend is over too soon again-it flew by...so busy getting ready for Christmas. Today Sam put up some decorations outside (to impress Connor I think) I'll try and get a picture tomorrow night, it looks real cute.
He was good at church today, a little scared of the singing since he hadn't been in a while. I don't really like him around that many people at once in such a packed space...Luckily no one was coughing or sneezing on him.
Not much going on this week-just ballet for Samantha, speech therapy for Connor and Ryan and Stacy leave Saturday for Washington State-so they are scrambling to do everything they want to do here before they go into the coming week. Next week is vacation week for Sam-not sure if we are doing much yet-I know we have clinic on Tuesday the 23rd (fun vacation day, huh Sam, lol?)
More soon and God Bless,
Debbie

"Holiday Playgroup Fun"

2008-12-11T23:01:00.002-05:00

Connor had the BEST time today at playgroup.

The topic today was "Holiday Fun" and there were gingerbread houses and cookies to decorate, stickers to play with, a rice & bean box to dig in with holiday toys buried in it, a choo-choo train, and best of all-Santa came! He sat in a corner the ENTIRE hour and waited for the kids to warm up to him and come over. One of the therapists was waiting with her camera and whenever one of the kids got close-she snapped their pic with Santa! So hopefully I'll be getting a "face-shot" of Connor from her in my e-mail, since all I got was the back of Connor's head with Santa. :)

Connor was so cute with Santa-he was signing "please candy" over and over again to get more candy canes! Every time Santa gave him one-Connor went and gave it away to someone else. (Awww ) He probably did this 25 times, lol! Anyway-it was sweet to see him being so charming and cute and friendly. Daddy was pretty impressed with the house Connor made when we showed him afterwords.

Physically, he is doing well right now. He came through steroid week like a champ, thanks to the new med we decided to add to decrease the side effects of "roid-rage"
He has been having to take the Vicadin this week, just to cut down on the pain he experiences, but tonight he went to bed without any! (Yeah Connor) So now we should be good for a bit until round 6 next month.

On a sad note-our local hospital has made the decision to close the doors on the PICU unit forever. :( I cannot believe this is happening in a town as large as ours! All the more seriously ill children will go to Atlanta from now on. This doesn't really effect us, since all of Connor's treatments are already in Atlanta... But it DOES effect my sister who is an RN in the pediatric intensive care unit and has been for a long time. She still has a job, but a changing one now I suppose. I just think our city can do a lot better than this.

Love to all and thanks for checking on us,
Debbie

Birthday Fun

2008-12-10T22:48:00.003-05:00

We had a great time this past weekend celebrating Samantha's 6th birthday. She won't officially be 6 until the 27th (a day she shares with me and her Aunt Laurie) but we always have her party early since it is so close to Christmas. The theme was a "Nutcracker Ballet". Thanks to all who helped us make it so special for her!
Here is her cake...

Samantha posing!

Me doing Samantha's "ballerina" make-up

Happy Birthday Samantha! We love you SO much!

Flashes of Hope

2008-12-06T02:39:00.001-05:00

Here is one of the pics taken a few months ago by Flashes of Hope when they came to visit The Aflac Cancer Center in Atlanta, where we go for Connor's treatments. What an amazing organization! The people were wonderful and so patient and friendly. We were given an entire session of photos-all for free. Thank you FOH!

Another tough day at home (for both the little ones) Connor spent most of the day in my bed watching Thomas the Train. Then he napped for quite some time-he did eat a good dinner tonight, which was wonderful to see. Samantha was still home with her tummy bug and throwing up-she missed a field trip today and was more upset about that than the vomiting! Poor baby :) She took a shower late this afternoon and it perked her up a bit and the party plans go on...

Tomorrow at 2pm our house is going to be transformed into a Nutcracker Ballet! I can't wait to post pics-the cake turned out so cute. Hard to believe Samantha is turning 6!!! Such a big girl lately too, wanting to get her ears pierced is her latest obsession, lol. I don't know about that yet.

Love to all,
Debbie

"Choo-Choo Day"

2008-12-04T23:28:00.004-05:00

Today was supposed to be a really fun day for Connor-it was train day at playgroup and right now trains are his favorite thing to play with...he is still feeling puny and just not well. Could be the meds, could be some touches of the virus he had last week still upsetting his system-but whatever it is-we are ready for it to go away! We made it to playgroup and it started good, but after a while Connor very clearly expressed his desire to leave. He kept pointing to the door and saying, "Baaa" as in "BYE" and was signing "all done". :-) Pretty clear don't you think? His therapist was so pleased he was communicating-she said I probably should listen to him and go ahead and call it quits and leave-so we did. Here are some pics of him from this morning-you can really tell in the 2nd pic how rough the last few weeks have been on him. He just looks very tired and his face, which should be pretty puffy from the steroids, is looking almost thin (for him)

Samantha has caught the throwing up bug and was home from school today. We hope she is better in time for her party Saturday.

We missed Fantasy in Lights today because of all this-so we hope to go next week sometime. We can't wait to see Connor's reaction to all the pretty Christmas lights! Ryan, Stacy, and Samantha love it too-no matter how many times we see it, it is still magical.

I'm VERY excited about all the links on the right-hand side of the blog I have been collecting! When Connor was first diagnosed, there were hardly any stories out in "cyberspace" about other kids going through the same thing as he is, fighting OMS. Not surprising-since only 1 in 10 million people are diagnosed with this condition each year. If you have time-check out Connor's friends from all over the world, battling each day to beat OMS. Thanks to all who emailed me their kids sites to share. :)

Thanks for checking on us. Please keep praying for a cure to be found for Connor and the rest of the children like him.

Love,
Debbie

Took Connor in...

2008-12-02T00:04:00.002-05:00

Woke up AGAIN today to find Connor in a bed full of vomit. I felt SO bad, we checked on him a bunch last night, so it must have happened sometime after 1 am. Still pulling on his ears, so I took him to the doctor-mostly to rule out anything more serious going on.

No ear infection or strep-probably just a virus causing the throwing up (which I figured) but the mouth pain and not eating I was really hoping he would say is strep, so it would go away with treatment.

He said the ears could be hurting if his jawline is hurting from the steroids. Maybe, just don't know for sure...

Hopefully tomorrow he will feel a little better and eat a little too. I was thinking of getting some of those Carnation Instant Breakfast shake things to see if he could get some nutrition in that way-all he ate today was a few bites of oatmeal. That was it for the WHOLE day. He will drink milk, but even his favorite foods aren't tempting him. This has been going on for a month almost (the not eating) Please pray that it is all just him feeling yucky and nothing else. He sure could use a break right now.

Samantha was home sick today as well. Just coughing mostly, but bed enough to keep her home. We are planning on going to Fantasy in Lights Thursday at Callaway Gardens-so I hope everyone is perkier by then.

Stacy is frantically busy with Science Fair, we are all ready for that to be over. Her tri-board turned out awesome!!! Ryan got lucky on this one and didn't have to do a project...so he has been busy reading mostly.

Love to all-
Debbie

Check Out New Pics!

2008-12-01T00:32:00.001-05:00

I added a new slideshow to the area right above this post...just various pics from 2008. Hard to believe it almost 2009!

Connor seems to be over the tummy bug he has had-still not eating much and acting like his mouth is giving him problems still. Tonight he took the first dose of the new medicine he will take before each steroid cycle to try and combat the intense mood problems he experiences
(and us, lol) We should know by the weekend if it is going to help or not. Usually after he takes the steroids, he will spend hours just screaming and crying, frustrated easily, one minute okay-the next minute freakijng out over nothing really...He wants something, we give it to him, the next minute he is throwing it and screaming for something else! Racing around, never stopping, happy and sad, laughing then crying, no voice left from crying so terribly, hitting, won't let me dress him, feed him, put him in the carseat, go to stores, nothing makes him happy for long-changing his diaper is like World War 3! The only downtime during steroid time is when he is sleeping, which thank goodness, he is sleeping pretty okay at the moment-still comes to our room a lot to sleep with us-but we don't care as long as he goes to sleep, you know?

We saw The Nutcracker Ballet last night (me, Stacy, and Samantha) It was beautiful and helped to get us all in the Christmas spirit a little more...Samantha started coming down with a cold though, and spent today trying to recover in time for school tomorrow. Hopefully she will be back to herself in a couple days. She has a big weekend coming up (her 6th birthday party) that we are all excited about. My little baby girl is going to be 6! I don't know where the time has gone?

Happy December Everybody, thanks for peeking in on us!
Deb

Ut-oh!

2008-11-29T00:15:00.002-05:00

We awoke this morning to Connor not feeling good at all. I am not sure what is wrong, it could be a virus, or something else? Poor baby threw up badly this morning and again tonight at Nini's house. The rest of the day he seemed alright, a little quieter than usual, and still refusing to eat much at all. In fact, he didn't eat any dinner tonight before he got sick again...this evening he began pulling on his ears, so I am worried about ending up at the after-hours clinic tomorrow to see a doctor. I hope fever stays away-or some IV antibiotics might be needed (which means a trip to Atlanta since our local hospital does not want to treat him anymore)

I forgot to mention that his hearing test came back normal! He now has most of the paperwork in order to start school next year in the STEPS program for delayed children, if he is able.

Ut, oh-he is awake and wants me to lay down with him.

Better run-
Debbie

Happy Thanksgiving!

2008-11-28T00:30:00.003-05:00

Seems like a wonderful time of year to take a minute and remember all the things in life that we are thankful for! My list is quite long-we are blessed and fortunate in so many ways. Please indulge me while I reflect on the MANY gifts in my life.

Of course tops on my list is my beautiful family, especially my husband Sam who is everything in a husband and father I could ever ask and more. Always upbeat, funny, smart beyond words, handsome, thoughtful, kind, devoted, giving, supportive, (am I boring ya'll yet, lol?) and above all a wonderful leader for our family and a faithful follower of our Lord.

Great kids-you guys are awesome and surprise me each and every day by how much you have grown and changed and matured. I am the luckiest mother in the world to have four blessings named Ryan, Stacy, Samantha, and Connor.

Now I better just start listing or this could get REALLY long (he-he)

*My family, especially my twin sister Laurie-my best friend in the whole world!
*Sam's family-Sido and Tata and all the uncles
*The town we live in...I LOVE Columbus!
*Connor's doctor's and nurses who have taken such good care of him...Dr. George, Erika, Rebecca, Dr. Berenson, Dr. Mansfield, Dr. Rauschbaum, Ellen-the best speech teacher in the world, we love you...Resa and Debbie-we miss you guys! And all the other countless nurses and doctors who have touched our lives this past year and a half.
*CaringBridge, Blogger, Carepages, etc...WOW-what a world that has opened thru these pages. Meeting all these families via the internet is life-changing and just an incredible way to reach out in such a fast-paced world.
*Samantha's school-I am SO grateful for the warm welcome she has received and the great education she is lucky enough to be getting from her sweet teachers. Thank you!
* A wonderful church that has stood by us and kept Connor in prayers continuously.
*All the support from friends and even strangers-we are so lucky to not only have Connor prayed for, but our other three children-this has been tough for them as well. (This means all of you too!) :-)
*Hospitals close enough to drive to (Scottish Rite) An amazing facility filled with the absolute best doctors and nurses I have ever met in my life.
*Playgroup-this is Connor's only chance to be around other kids and I am so thankful to Ellen & Shannon for making it possible for Connor to attend.

We enjoyed today tremendously-watched the parade this morning, Connor's favorite float was the safari one in the Philadelphia parade on a different channel than the Macy's one. He saw a giant bird on there that he just loved! Then we realized the city looked nothing like NY and that we were missing the "Big" parade and quickly change the channel. I didn't know there was more than one parade! LOL

Dinner was yummy-Mom really outdid herself this year. All the kids had their certain favorites-Stacy liked the mashed potatoes best, Ryan liked the deviled eggs and ceaser salad, Samantha liked the deviled eggs and rolls, and Connor just nibbled on a little bit of everything. But NOT the Thanksgiving cupcakes I made-I think he thought it was too pretty to eat-he just kept staring at it in awe and rearranging the toppings...I tried to get a piece off for him, but he grabbed the bit of cupcake and put in BACK on the cupcake-like to make it pretty again. Awww, so sweet!

I am tired and off to bed, but I wanted to say how thankful we are for all the prayers for our family and the support as well. Love to all!

Debbie

Oh-BTW, I saw this blinkie and thought it was adorable. It is for kids that use sign language.
Connor has the Baby Signing Time videos and that is what "signing time" means, lol.

Please keep Connor in your thoughts...

2008-11-26T11:50:00.002-05:00

This weekend is another high-dose steroid weekend followed by the 2 weeks of pain and steroid psychosis which means hours upon hours of crying and hurting.

We have hope for this cycle though-Dr. George is putting him on a new medicine to combat the "craziness" he gets while on the steroids. Most leukemia patients who take HALF the amount of steroids Connor does, can't deal with the side effects so we feel we have no choice but to try and help him get through this any way we can.

He is making so much progress right now mentally that we can't afford for him to be physically unable to learn for half of the month. KWIM?

Can you tell we didn't want to add yet another med to his little body? But I feel this is a good move to at least try for this cycle to se if he tolerates it better. It sure can't get much worse!

He starts it a couple days before the steroids, so we give it to him Thanksgiving night for the first time. Pray that it helps him please. The poor baby is just really suffering right now and could use a break. Love to all and thanks for checking on all of us.

Have a Happy and Blessed Thanksgiving,
Debbie

Puppy Post Continued...

2008-11-24T23:06:00.003-05:00

Seems one bath isn't enough when it comes to getting large quantities of olive oil out of doggie hair! Today was the first day of Sam's vacation and we went to Target to buy some Dawn Dishwashing liquid to see if that might "cut the grease" so to speak, lol. It did thank goodness, and Belle is back to normal. No sooner was this saga over with and Sam was pouring some old leftover Sprite out in the backyard and Belle was lapping it up. Good grief! He has got to stop this or his time off fro m work is going to drive me batty. :)

We did some Christmas shopping for the kids today and Connor enjoyed looking at decorations again at all the stores. His favorite? A giant pink flamingo wearing a Santa hat! Silly boy-he was so cute signing bird while he was staring at it in awe. The thing was tacky, but I suppose very beautiful and colorful to him.

We had a meeting at Samantha's school and afterwords we got incredibly lucky and were able to watch her class practice for the Thanksgiving play tomorrow! Yeah!!! We are still upset that we won't be there for the real thing-but this was so wonderful to get to see Samantha singing and saying her famous, "Mercy me!" line. (adorable) Aunt Kristi is still planning to make us a DVD of the live performance tomorrow while we are in Atlanta for Connor's treatment (Thanks Kris, I love u) and we will be able to all sit down and watch it together at home later this week.

Ryan and Stacy are looking forward to vacation...I think we all need some downtime right now.
Stacy will be busy finishing up her project for Science Fair, but other than that-just family stuff going on the next few days...

Thanks for the well wishes, prayers, and love. I hope I haven't hurt anyone's feelings if I haven't been as good as I should be with calls, emails, etc...I am not too proud to admit I am overwelmed right now with all that is going on mentally, physically, and emotionally-not just with Connor-but with trying to keep everything normal and fun for the rest of the family. I am struggling every day to keep my head above water with all the appts. and driving, and kids and their schedules, the house, Sam, and the businesses, etc. Please know I haven't forgotten anyone, and I am trying to get back in the swing of things after a much needed break. Love to ALL.
God Bless,
Debbie

Tree's, Nutcracker's, & a Marinated Doggy?

2008-11-23T22:48:00.003-05:00

The weekend is just about over and Connor is doing good! What a relief after another bumpy week. The mouth issues got bad enough to call the doctor...without looking in his mouth-just by what I described to them and the kind of pain I was describing-the doctor does NOT think these are mouth sores we are dealing with. He thinks the spots I saw in Connor's mouth might be from where he possibly bit his cheek or maybe a little thrush going on which we know he has been struggling with...He thinks it is jaw pain. It makes sense-the way he is holding his fingers under his tongue, and won't eat anything but soft foods and drinks...poor baby.

So not only does he have the intense pain to deal with for the two weeks out of the month following the 3 days of high dose steroids he takes each month-now his jaw is killing him all month? He said yes, pain in and around the jawline is common. He said to give him the Vicadin to help with the pain since the Motrin isn't helping. Thankfully today he is doing much better, so maybe it is easing up a bit. I just hate all these side effects-but without the steroids-he will be back to having a full relapse and probably lose his speech, his walking, all that he has learned the last few months...

We set the Christmas tree up today! Connor is VERY interested in any and all decorations this year, so we figured a jumpstart on decorating might be a good idea. The house looks festive and ready for lots of fun-good thing because we have a couple parties coming up soon.

Samantha is having "A Nutcracker Ballet" party for her birthday this year. She is really into her ballet, can you tell? :-) I am not quite sure what we are doing at this party yet-but I have a feeling dancing is involved.

Oh, here is a funny story that happened tonight.

Sam grilled tonight for dinner, with lots of help from Samantha and Belle, when suddenly Samantha and the dog came in the house and Belle was all wet.
None of us could figure out how the dog got wet when it wasn't raining outside...as I was setting the table, Belle was running around all soggy-and the floor was getting slippery.
Then, Sam comes in and confesses what happened. He threw all the marinade the meat was in out in the grass after he put the meat on the grill!
So Belle had been outside just rolling around in his "mystery marinade" for who knows how long?
GROSS! She must have been in heaven with all those raw meat smells and the oils and spices, lol...Off to the bathtub for her! She smelled bad, and for those of you that have ever seen Sam marinate meat-you know what I mean by "mystery" :-} Probably a whole can of diet soda thrown in with the oil!

We'll be in Atlanta Tuesday, so please keep Connor and all the children in your prayers for a smooth day for all.
Thanks and love to all!
Debbie