Connor's Corner

Friday, June 27, 2008

Good Day and Goodbye

We had a great day today! Here is a pic of "some" of the cousins at a goodbye dinner for the twins tonight at B. Merrel's. Stacy, Kevin, Ryan, Samantha, & Steven all had a great time hanging out. Tomorrow afternoon Ryan and Stacy fly to Washington State for a month long visit. We are going to miss you both SO much!

Earlier this afternoon we all headed to Nini's house for a swim (even Belle!) I had an idea, that if Connor saw the doggy in the pool-maybe he might try it. (he has been too afraid all summer to put more than just his feet in) Well-I think it worked! He actually held his arms out to me for me to carry him around in the water. It was terrific seeing him enjoy the pool finally. I always wondered if it was true about dogs naturally knowing how to swim-it is! Belle only paddled around for a little bit-but she is a pro, lol. :)

I'm off-lots to do before tomorrow. I still need to pack for me and the little ones since we are staying in Atlanta for the weekend.

God Bless,


"The Monster"

Hi all! Had to share this is by Steve Dolling-a brilliant and creative man whose love for his child shines through his written words.

The Monster

There's a monster. It lives in our house.

It moved in a long time ago. It must have been hiding in the walls
because we didn't notice him for the longest time. But it was there.
It's the funniest thing because I never really believed in monsters. I
thought they were the stuff of fairy tales. Imaginary beasts that people
made up to explain their fears. They weren't real though. Were they?

But now I know they are real. The thing about monsters is they're not
just big and scary and with sharp teeth. Bears are big and scary with> sharp teeth, but they're not monsters. The difference is that the
monster has a malevolent streak. It's not there because it wants to eat
your garbage; it's there because it means to do you harm.
Disney got it all wrong in Monsters Inc. Don't believe it. That's all
imaginary. Those kinds of cute cuddly monsters don't exist. Steven King
has it right.

The monster sometimes comes into our room at night and slithers
underneath the bed. Its hot breath comes right through the mattress. It
leaves me sweating, scared, unable to sleep. And then a chill settle's
in like the window was left open on a January night.

We've tried to kill it a dozen times. Sometimes it seems like we're
winning, but still it won't die. And even if we kill it, I have this
terrible feeling it will come back from the dead like just like in the
sequel to a bad horror movie.

It's a clever beast and follows us wherever we go. There's no escape. We
can never see it because it hides in the shadows, but it's always there
and has ways of making its presence known. We can't live a normal life.

When we got the dog, we thought maybe he would scare the monster away.
The dog is smart and brave, but somehow he doesn't see the monster. The monster, though, is keeping its distance. But somehow I think it might
be smarter than the dog and just waiting for its moment.

Try to explain a monster to your friends. They can hear what we're
saying, but they don't quite believe us. We still have all of our body
parts, and none of us has quite gone insane. They've never seen the
monster even though they've been to the house. Still they get the sense
that something isn't quite right. Some of them keep their distance. Now
we just smile and say, "Oh the monster...he's gone back inside the wall.
We're doing fine."

Sometimes our monster doesn't seem so scary. On a sunny day, when the
kids run in the park laughing and playing, we forget that it's back
there waiting for us. You have to forget for a while, or it will get
inside your mind and drive you over the edge.

There are professionals who know how to deal with monsters. Ordinary
folks never meet them other than on a social basis. We feel better when
we're with the professionals. They seem to know what they're doing. But
at night when we are home alone, there is just us... and the monster.
The chill returns.
There's a monster. It lives in our house. It lives in our boy."

Wednesday, June 25, 2008

Playgroup Last Week

Connor had a great time last week at playgroup. It was held on the playground area of Burger King. (During the summer we are going to different locations) Once he got over his shyness, he had a ball! Stacy came along and we had fun chasing after Connor and just watching him in action. The first picture is of Connor and his speech therapist (a.k.a. his best friend, lol) She is so wonderful with all the kids and really seems to understand Connor. We love you Ellen!

Tomorrow is another playgroup day-this time at the Columbus Museum. I hope Connor does as well there as he did at BK.

Yesterday during speech therapy Connor played pretty good with a few toys (rare for him still) Not a lot going on with speech yet-but Ellen had some good ideas of games to play with him to hopefully get him using some sounds.

Kevin is staying over tonight-savoring as much time as he can with the twins before they leave Saturday for Washington State. (annual trip for a month to see my ex) Me and Sam are probably going to stay the night in Atlanta this weekend, and hit the outlets a little further north. There are some about an hour from Atlanta that we love! Stride Rite, Gymboree, Hartstrings-all the goodies! (In my opinion, not Sam's-lol)

Thanks for checking on us!

Tuesday, June 24, 2008

OMS Kids Across America

I love You Tube! If you are ever bored it is a sure way to find entertainment of all kinds. I was just browsing around and came across this wonderful video and it happens to include Connor! Be patient, his picture is near the end, but it is worthwhile to see all these strong and brave children afflicted with OMS. I consider so many of them Connor's "friends" since we are on an online group together, sharing info and questions we all have about this extremely rare disease. Thanks Melodie for the beautiful job you did putting this together!

Sunday, June 22, 2008

Good Feelings...

For the first time in over a week I am sitting at my computer desk in a cool house. That is such a good feeling, that most of us probably take for granted most of the time (including me) until it is gone! There are other things I do that with also-such as an ice cold diet soda (tastes better after not having one for a while, lol) Just silly stuff you don't think about all the time, you know?

I know before Connor's diagnosis I thought about sick kids from time to time-but I had never really known any children with chronic illnesses-so that kept it far from my thoughts. Now my world revolves around so many appointments it is mind boggling-medications, doctor visits, scans, therapy appointments, investigating new therapies that might be "The One", it is nuts! Add three other kids into that equation and it equals a fine balance and a lot of patience-for me, Sam, and all the children.

Our flights are scheduled for our trip, and everything seems to be working itself out. Thanks Aunt Kristi, Nini, and Aunt Lallie for all the help with Samantha and Belle, and of course Ryan and Stacy as well. We couldn't do this without our wonderful family helping us so much!

I heard back from our oncologist and he is prepared to start Connor on a new therapy as soon as we all figure out the best approach. We plan to use the information we get from the specialist in IL, and determine the next step. It will most likely be him going back on steroids, or trying a drug called Rituxan, or both. All the possibilities are not without risk, and therefore we are not going into this lightly. If he does steroids, it will probably be done at the hospital this time intravenously, instead of orally at home. Some kids do better with pulse doses-higher amounts for a few days vs. every day of lower dose steroids. The Rituxan is given by infusion weekly through his port, also at the hospital, as some reactions can occur and close medical supervision is needed. These are only a couple of the possibilities and nothing is for sure yet. All of it is depending on how Connor is doing-and that seems to change every day! Good and bad, never know...

Please keep upcoming appointments and Connor close in your prayers-We pray for a beautiful scan with no new tumors, along with OMS symptoms to continue to improve each day.

God Bless,

Friday, June 20, 2008

Sweet Babies...


Ahhh, this picture takes me right back to the moment I took it. Samantha was just about to go to bed, and our routine was to lay Connor on her bed while we got everything ready and picked out a story. He looked so small on her big bed, and she decided to lay down by him and they were just staring into each others eyes...pure magic and so much love shared!

Sharing old pics because of computer trouble, lol.

Busy days for us, lots of appointments-not just for Connor, but getting all the kiddos in to the dentist and the twins to the eye doctor. Trying to squeeze some fun in between all the boring stuff. We all played LIFE yesterday and it was funny-Belle swiped my game piece and ate my husband! The kids thought that was just hysterical!

Connor had speech and playgroup yesterday. He has been very quiet lately, not even doing much babbling. Playgroup was at Burger King and he had fun running around with Stacy there and sliding down the slide.

Just enjoying our time together before the craziness of next month. I am overwhelmed by the amount of paperwork I need to prepare and gather for the doctor in Illinois. Records, test results, full history, recent blood work needs to be faxed two weeks goes on and on. I also need to adjust the schedule for his IVIG treatments. Connor cannot receive IVIG in the 4 weeks prior to our trip, so I am going to try and get him in around the 30th of June for his last one for a while.

We haven't got our tickets yet, but our stay in Illinois seems to be arranged. We are (hopefully) going to be at the Ronald McDonald House and it is supposed to be close to the hospital. The appt. is set for 8:45am and the spinal tap at 11am. We should be there until 4 or 5 pm and able to leave the next day. Thanks to a very dear friend, we will even have transportation while we are there-without the hassle of renting a car. So things are falling into place...Just need lots of prayers for safe travels, and for God to work through these doctors in helping our son.

Love to all,

Tuesday, June 17, 2008

Look What Stacy Made!

This just melted my heart...not just because of all the sweet pictures of Connor here-but the fact that Stacy made this as a tribute to her baby brother, who she loves so much. Connor is one lucky boy! It is like he has two mama's around here between me and Stacy, lol. I love you Stacy!

Monday, June 16, 2008

Killin time in the heat...


Not Connor-ME! We haven't had air conditioning for 4 days now! So, to kill some time, I played around a little with some pictures, lol...Here is Connor last June at the beach. Check out the little surfer guy behind him-I thought that turned out cool!

No telling when the air will be working. Lightening struck our unit last Thursday night and smoke came flying out of it and set off all our fire alarms about 1 am. (It went out with a bang!) No fire thank goodness, but even a new unit hasn't fixed the air problem...hopefully soon because we are all pretty on edge from the heat. The high today was 94 F, and it feels cooler outside than in.

I'm having trouble with scheduling Connor's CT scan with Atlanta. It will probably be next Wednesday though...I'll keep everyone posted. Please have good thoughts and prayers for him that day-it is going to be a long, rough day. He is getting an NG tube inserted, in order for the contrast to be put directly into that, instead of him having to drink it. It has to be done very slowly over two hours and then his port will be accessed for the sedation. And of course-NPO, nothing to eat or drink.

Also, we are heading to Springfield, Illinois on July 27th to meet with an OMS specialist there. Connor will have a spinal tap done to determine the level of his B & C cells (results help decide the best treatment for him) We also haven't worked out those details yet.

No lasting inflammation from the IVIG troubles last week, thank goodness. His port appears fine and hopefully is in good working order. The next treatment will be on July 2nd.

God Bless,


Sunday, June 15, 2008

Happy Father's Day!

Here it is! "Our D-A-D-D-Y Project" Ready to be put in a five section frame, as soon as I locate one, lol. Happy Father's Day Sam-you never fail to amaze me with the love you give to us every day. I love you!

Friday, June 13, 2008

Another angel...

Little Marissa Monroe has earned her angel wings...she is the daughter of one of the dad's on The Loneliest Road Campaign. Please pray for her family as they grieve their baby girl.

Thursday, June 12, 2008

Good Luck Adam!

Adam is off early in the morning to get tubes put in his ears. You'll do great! We love you SO much and can't wait until you are feeling better and can play with Connor (I'll even make sure Connor doesn't pull your hair! LOL)

As for Mr. Connor-he is feeling lots better today. Doesn't want anyone to touch his tender port side, but much better than yesterday. The swelling is down by about half-so he still has some inflammation in there that the doctor wants gone by Monday, or they will have to do a test on him (putting dye thru him to see if the port has any leaks)

If he did have a leak-he would need an operation to get a new port-a-cath implanted-so we are very much hoping the shrinking continues.

We wait and watch and call them on Monday if he is still swollen. It looks like it is going to all get absorbed and be okay though. Thanks for all the prayers and reassurances!

We had to quit giving Connor the herbal treatment, it looked like it was making the OMS worse instead of better. (Oops) It enhances the immune system, so if his problem lies in the B-Cell area (like if he has too many) then enhancing his system to make more, is not going to help him. We are not sure if that is where his problems lie, but hope to find out soon.

Almost Friday! We are trying to plan a nice family weekend with the kids. Maybe head to Atlanta for the day Saturday? I'll let you all know what we decide to do. Be nice to go there for fun and not just doctor visits.

God Bless!


Wednesday, June 11, 2008


The day ended badly at the hospital. Connor is just miserable, in pain, crying and inconsolable. I have had it, so Sam came home early and is giving me a break.

When it was time to de-access his port, Connor had just woken up, and the nurse always draws back first to see if she gets blood (that means it is working well and in place) No blood! That means the needle slipped out of place sometime during the day!

So I got his shirt off him and he was blown up on his side like a balloon. The medicine all went under his skin instead of in his body-so he was in bad pain from it. The nurse went to call the pharmacy, and they called the company that makes the stuff, to find out if it is dangerous (like if it was chemo, that would eat away at everything)

I called Atlanta-and the nurse checked and said he will be fine, that it will get absorbed slowly over the next day or two. I have to take him to the doctor tomorrow to get his port looked at, and make sure he is okay and I plan on giving him lots of Benedryl and Tylonel.

Thank God it was not the chemo! Hopefully by tomorrow he will be fine and the swelling will be gone.

I included some pics from the better part of the day! (Connor napping, Daddy & Connor, Adam & Connor, and one upset boy ready to go home)

IVIG Treatment Day

Lucky me! Snagged a computer at the hospital today-kinda helps when the boredom sets in, lol. Connor is napping and has been great today. He was fearful and crying while his port was accessed, but calmed down much quicker afterwords than usual. Then after everything was hooked up-off he went!

We brought his umbrella stroller and "invisible baby" and he pushed it around for a good bit. Roaming the halls passed some time, and then Aunt Laurie, Erin and Adam came to visit! Connor is always happy to see Adam especially...Daddy came by for lunch and was able to get Connor to sleep. Hope to be out of here soon! Thanks for checking on us.


Monday, June 9, 2008

Happy Birthday Kevin!

What a weekend! My nephew Kevin had his pool party Saturday in the 100 degree heat. It was HOT! Connor kept cool in the pool with Daddy for most of it, only up to his feet though-he isn't too sure about this water stuff...we went swimming again today and Connor was having nothing to do with actually getting IN the pool. Samantha on the other hand, is finally getting around a bit in the water, thanks to many flotation devices and a LOT of courage, lol. Ryan and Stacy spent the night with Aunt Kristi on Saturday and had a blast with their cousins Steven and birthday boy Kevin...they went swimming as well-not much else to do in this kind of heat.

Wednesday is hospital day for Connor...probably just me and him, since Sam is busy at work this week. Praying for an easy time for him, and and for good results from the IVIG treatment. He needs a good boost right now to get him improving-maybe this will help. I plan to email Dr. G this week and let him know Connor's progress, so we can begin a plan of action. I am overwhelmed at the prospect of figuring out new treatments-so hopefully with a lot of prayer, he won't need any!

Chloe Shiver is in Atlanta at Egleston with a fever, so please remember her in your prayers as well. What a brave girl she is!

Me and Kristi went to the Firewalk last night and my friend Jenny walked in Connor's honor over the hot coals. Thank you Jenny for all your love and support you have shown us this past year-you are awesome!

Now some fun news! I am in the process of applying to be a Make-A-Wish volunteer! This is an amazing organization and one that does an incredible job of giving kids with life-threatening illnesses, a chance to forget all the day to day stresses, and enjoy being a kid again. I will let you all know how it goes!

Love to all!

Saturday, June 7, 2008

Big Boy Bed

Look who is sleeping his new big boy bed! We have been amazed how well the transition has gone (no fussing, no getting up) Just one little boy, in a giant bed, sleeping peacefully. He is still getting over his allergic reaction to the mosquito bites he got on Memorial Day (see red spot on face) We are about to go to cousin Kevin's pool party and hope those buggers leave him alone this time!

Don't forget the Firewalk tonight downtown at The Tap. I also forgot to tell you guys, that in the previous post, you can click on a short video telling more about the Firewalk.


Friday, June 6, 2008

Firewalk on Saturday Night

I almost forgot to mention that Scott Goodknight is having a Firewalk downtown on Saturday night at 8:30pm. There was a great article about the event the other day...should be really fun. We were at the Firewalk For Chloe back in March, and it was amazing. Hope to see you there!

Connor had a rough day today...pretty spaced out and having a lot of issues with head and eye shakes. For the first time today I considered traveling to either Illinois or California to have him evaluated by an OMS specialist. There are only two in the United States, and I don't know if we would get any more answers than we have now-but maybe it would be worth it? Who knows what to do at this point?

Vacation Bible School is coming to an end and I am SO proud of the kids! Ryan and Stacy were great volunteers and Samantha had a blast. Next week...Music Camp! Just for Samantha though-the big kids want to relax and enjoy some summer down-time.

Please keep all the OMS children and the brave NB warriors in your prayers...especially little Marissa who needs those prayers desperately right now.

God Bless,

Wednesday, June 4, 2008

Going Green!

We are wayyy behind on a bunch of home improvement projects, mostly due to all the craziness of this past year and Sam's overloaded schedule. So, I am thrilled that we are finally able to tackle some of the larger projects around the house. Right now we are focusing on re-painting the entire house with a semi-gloss (and kid friendly) paint. Flat paint can be beautiful, but not with fingerprint smudges all over it :) First up-the kitchen, before it was an eggshell color...and now a very "unique" green, lol. It is growing on us-the first night we were ready to change it ASAP to yellow. But now, I am enjoying my new green-scene!

New Day...New Blog!

Well, I finally decided to venture away from the CaringBridge page I have used since last year. I am so grateful for the site-it has been such a blessing to have a place I can share info, vent, tell good news (and bad) but I have been feeling like I need to move on and start a new site, not just for Connor-but for the whole family. After all, his diagnosis affected the entire family-it just seems fitting to have a place for our family news.

The title of the blog was an easy choice. I have relied on music to help me emotionally heal from this journey through childhood cancer. One song in particular moved me and helped keep me from going completely crazy! It is by a man (lol, boy to me really, since me and my twin sister went to school with him) named Bebo Norman...the words and the music are so beautiful and healing as well. It is called, "I Will Lift My Eyes" and Bebo's voice does it justice.

Thanks for following me here...hope to see you back soon!

*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