Connor's Corner

Thursday, September 25, 2008

New Look!

Decided to switch things up a little, and re-do the site. That isn't the only new look going on-Mr. Connor has a new haircut that is simply adorable! I tried to cut it, and it ended badly...luckily our friends at Pigtails and Crewcuts were able to repair my mistakes :) It is pretty short in the back, but actually really practical for him since he is outside so much playing in the gorgeous weather we have had lately.

He is doing good, still having some off and on pain in his legs, especially at night, but otherwise doing well. Been working hard on "basic understanding" and today he followed a direction. I told him to go throw something away-and he did it for me, and later for Nini too! I was so thrilled for him! We all clapped and made a big deal over it, I can't wait to tell his speech therapist when we see her again.

Next week is scan time again, and Monday will be the extra tough day for Connor. The contrast is SO awful, and he is at a tough age for forcing him to drink it if he doesn't want to. So, we will try our best, and if we have to, we will use a syringe to force it down him-anything to avoid the horrors of the NG tube like last time. It has to be given SLOWLY, over two hours, so it is hard to see him suffering that long. We are praying for an easy as possible time for him, good results, and looking forward to moving to the 6 month scan schedule! Woo-hoo!

He is doing just wonderful on the high-dose steroids, we are very pleased with how well the drugs are controlling the jerking movements. Even the ones he was experiencing with his lungs are barely present now. The mood swings and achy joints are not fun side effects, but it could be MUCH worse, so we are counting our blessings.

As always-thanks for checking on us and Connor. Please keep him in your prayers next week for clear scans and also for Ryan, Stacy, and Samantha to have a smooth week being shuffled around a bit, while we go back and forth to Atlanta. It is rough on the whole family and they love Connor so much, I think sometimes what they imagine happening to him at the hospital, is worse than the reality...but it is next to impossible to truly help them understand that although it IS rough on Connor-it is also all he has ever known. So while they might get freaked out by a simple shot-that is a piece of cake for Connor...he doesn't like it, but he DOES accept it to a degree, and although he cries over painful procedures, he also is able to bounce back quickly and go about more fun things, like checking out favorite toys at the clinic. To him-that is his playground, as well as a hospital.


Thursday, September 11, 2008

"Flashes of Hope"

We have been going to the Aflac Cancer Center for just over a year now-and I always wondered if we would happen to be there on one of the days that the group Flashes of Hope comes (every other month). They are a group of professional photographers that donate their time (and talent) by taking pictures of the kids and their families for free at the clinic. We had a nice surprise when we walked in yesterday and they were there! Connor was great, much to our surprise, and sat for a few photos... The people were wonderful, and knew all the tricks to getting smiles out of little kids. One word-Bubbles! :)

The day was long, as expected, but Connor did great. He had a low grade fever, but didn't require any extra treatment since it wasn't over 101 F. He received his IVIG and the new antibiotic he will get for the next 4 months.

Poor guy had a rough week. He took his high dose steroids Saturday, Sunday, and Monday he was in terrible pain-all over his lower back, hips, and legs. (common side effect of high dose steroids, is flu-like symptoms, bad body & muscle aches) I couldn't stand to see him like this and Dr. George called in some hydrocodone, in case it got worse. Motrin has been a lifesaver, and as of today,
(Thursday) he is STILL tugging and pulling at his little legs in awful to know he is hurting, but the steroids DO seem to be helping the OMS-so on we go with treatment.

Looks like we will be heading back to Atlanta on the 30th for the big CT scan. Keep those prayers coming for good reports! We sort of expect Connor to require the NG tube, but are hoping he might drink the contrast. (we can dream, right? lol) The next day will be routine stuff, IVIG & antibiotic. We can't wait for this scan to be over-after this one he will jump to a 6 month scan schedule! Woo-hoo, I can hardly wait!

Connor had speech today and we had good news on the age level of his development from his therapist. She thinks he is measuring at a 20 month old level-and he is 28 months-so that is only 8 months behind! :) Not in the speech area of course, there he measures at about a 15 month old level...but it IS progress, so we'll take it! Afterwords, we went to playgroup-where Connor really seemed to enjoy himself, although he stayed in my lap most of the time-he played and smiled a lot.

Sorry if any of you haven't heard much from us lately. Just keeping tight schedules with all that is going on. We appreciate all the love and prayers for our family, it helps us tremendously to not feel so alone in this.

September 13th is Childhood Cancer Awareness day. I plan on wearing my gold pin-and of course remembering all the newest angels in heaven this year. If you can, maybe find a way to celebrate the day. I can think of lots of ways-find a site like Lunch For Life, or Coins 4 Kids-if you want to donate to the cause, or give blood, or just say a special prayer for a cure. That one for sure! Love to all-


Monday, September 8, 2008

My Hero...

September 6th came and went very quietly around was the one year anniversary of when we found out Connor has neuroblastoma and OMS. Sam and I couldn't help but reflect on the painful memories each time we looked at the clock and thought back to that exact moment of time a year ago and what we were doing.

All the questions and all the unknowns we had that day! More than I could even type if I wanted to, and fear like I have never felt before. Long days of testing followed, along with surgery on the 26th, and as we moved into October-the weight on our hearts lifted tremendously when we knew exactly what we were dealing with...good news that our Connor has Stage I NB, devastating news that he is one of the "lucky" ones with the extremely rare side effect of neuroblastoma called Opsoclonus Myoclonus Syndrome (OMS) Something so rare, most doctors have never even heard of it, and so rare that only a few doctors in the whole world treat it...not something you want to hear when it comes to your baby son.

We have come a long way in these 365 days since our battle began against this relentless cancer, and in our case, even more unrelenting autoimmune disease that has robbed our baby of a normal childhood and possibly a normal adulthood. We have had to face the fact that our perfect little boy, is not going to have an easy road ahead of him (we still struggle with this daily) and although he is perfect in our eyes-he is not seen that way by others. Already at his tender age of 2 yrs. 4 months we get the looks of pity, confusion, and the questions about WHY he doesn't do this, or know that, etc...this is bound to increase as he gets older and is so drastically different from his peers, in his cognitive ability, and lack of speech. This is where me and Sam draw strength from each other, and we try and boost each others spirits on days when one of us feels particularly down about Connor's health.

And if we have a VERY bad day-then all we have to do is look at our sweet Connor and he gives us all the encouragemnt we need to keep fighting for him and getting him the support he needs to improve. So we continue the assault on his tiny body with powerful drugs to fight off the attacks on his brain-and try to keep him sheltered from germs, that might cause a relapse of all his OMS symptoms.

A special package came in the mail on the one year mark of this journey...a box filled with "Hero Beads" to be strung on a string to demonstrate all our baby has been through in the last year. Each bead represents a test, a treatment, etc... and comes with a legend to show you the meaning behind each bead. I had ordered it for Connor to be a momento for when he is older-not knowing how moved I would be to see all the beads strung together with his name in the center-14 rounds of chemo, 15 IVIG infusions, 8 sedations, 2 hospital stays, nuclear medicine scans, MRI's, surgery, blood draws, finger pokes, x-rays. Fitting name-because Connor is our hero.

It hurts to think of all the "tests to come" he will have to endure to earn more beads...I never forget through all this heartache, how blessed we are that he was spared from the worst this cancer has to give-and with it I suppose we have a small amount of "surviviors guilt" that keeps me focused on the journeys of so many other children fighting NB. Our son has his own scars from his battle and a future not quite as bright as we had hoped and dreamed of-but a FUTURE none the less, something we never take for granted in the midst of all the death and sadness in the NB world.
We pray for the OMS families and NB families daily, and pray to God to watch over Connor and help him along his path...

Thanks for checking on us, and for the love & prayers-

Thursday, September 4, 2008

Quick Update

Sorry for the lack of posts-STILL no home computer. Everything is going well, Connor is doing better than he has in quite a while. (yeah!) We think the high dose steroids have made a big improvement with his myoclonus. Much less body jerking going on-still having some of his hiccups/lung jerks, but improved overall. This weekend he takes round 2-wish us luck with the mood swings, it gets ugly!

He also has been learning about time out, and it is helping a lot with some of the naughty behavior. Also, yesterday during speech, we decided to concentrate for this week on him learning the signs for open, stop, out, and go. He is picking them up pretty quickly right now and tonight at dinner when he wanted a drink-he did the sign all on his own! So cute!

Samantha started her dance lessons Tuesday night...the first class was hard for her, she was scared to death with butterflies in her stomach. But afterwords she seemed to love it! The dance school is very close to the restaurant so me and Sam ran over for a quick bite to eat unitl the class was done.

Speaking of the restaurant-it is awesome!!! The decor, the service, the food especially-all of it has come together so well. Stop by if you get a chance and have a margarita. (yum-yum) All the kids seem to love it there (even Ryan) so it is fun to have a "new" place to hang out. LaMargarita is off to a great start, I'll post some pics as soon as our computer is fixed.

Today is my mom's birthday and we are celebrating tomorrow night with Grandma Brown who is visiting from Reno. Happy Birthday Mom! We love you!

Monday, September 1, 2008

Tears and More Tears...

Today was a very sad day for the neuroblastoma world, and for a very special little boys family...Max past away last night, in his parents bed, with both of them by his side. This sweet little soul will forever be remembered by all those whose life he touched. He fought a long and brave battle...please pray for his mom, dad, brother and sister. You can read more about Max-click on the Mashed Potatoes for Breakfast link and then on Max's Cancer.

*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