Connor's Corner

Monday, April 27, 2009

Gearing up for Relay for Life!

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

See you there! :-)

Look Who's Three!!!

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 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!

Wednesday, April 22, 2009

Easter Fun...

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 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.


Saturday, April 18, 2009

Goodnight Sweet Braeden...

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 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.

Wednesday, April 15, 2009

Finally-some GOOD news!

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!


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

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...


Tuesday, April 14, 2009

Trying to perk up...

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!


Tuesday, April 7, 2009

New Link for Video...

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!


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.


Thursday, April 2, 2009

Brand New OMS Video 2009 "Our Hope Endures"

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...

*Our Family*


"Connor's 3rd Birthday in Pics"

Before OMS Onset....

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

"Holiday Slideshow 2008"

"A Year In Pictures-2008"

Slideshow Stacy Made!

Connor's 2nd Birthday April 2008

Halloween 2006

Connor George Khoury

Connor George Khoury