Connor's Corner

Thursday, July 31, 2008

"Dino-Might Day!"

Connor did awesome today! He didn't have any reactions to the meds and even managed to settle down towards the end for the vital signs girl (his arch enemy)

We go back next Wednesday for the 3rd treatment...the doctor also wants to send Connor for Neuro-Psych testing-so we can get a better idea where he is at developmentally.

The steroids will probably begin next week after the 3rd treatment...Our doctor is STILL trying to get in touch with the doctor in Illinois. No return call as of yet. Doesn't surprise me after the way I was treated, but still shocking in "the doctor world" Dr. George seemed pretty stunned by it all.

So we are halfway done with this treatment (Yeah!) Two down-two to go!

I also signed Ryan and Stacy up today for "Sibling Camp". It is going to be August 22nd and out at Camp Twin Lakes (about 50 miles from here) I think it will be a good idea for them to be around other kids in their situation who are dealing with a sick brother or sister...Family Camp is in October and we are (hopefully) going to go. There are a lot of opportunities available through the Aflac Cancer Clinic-all to help not only the sick child-but the WHOLE family. How cool is that? :)

Please keep Janice Reynolds in your thoughts and prayers...she posted little Danyelle's obituary and I wanted to share it with all of you. It mentions her struggle with OMS and tells about her love for Christ-amazing at such a young age! Only 7 and further along in her faith than most adults! Heaven is certainly brighter with her there-but the pain her mother is enduring is heartbreaking. Here is the link and click on Danyelle Reynolds.

Thanks for all the prayers and well wishes for our guy.

Wednesday, July 30, 2008

I could get used to this!

It is been very "normal" around here the last few days...and I've been enjoying every minute of it! LOL You know I have been busy, when I am posting favorite old pictures for your viewing enjoyment-instead of recent ones. Here is Connor during his first summer two years ago, hard to believe he was so small and snugable-still snugable, but he sure isn't that small anymore!

Ryan and Stacy returned home from their trip to WA, and we are all settling back in together, it has been wonderful having them back! Samantha and Connor are just thrilled to have Sissy & Bubba back as well. So we are just enjoying the little bit that is left of summer before school starts on the 11th of August.

Connor had therapy today and impressed Ellen with two of his new skills-pointing and he showed her his tummy (YEAH!) We have been working sooo hard on teaching him at least one body part, so we all cheer when he shows us his cute little belly. He is also babbling Dada more consistently now and trying to repeat it after us sometimes. This is a HUGE step for him, and it was odd today to be talking with Ellen not only about the usual stuff like sign language and using two word phrases with him, etc...but about Connor actually developing some speech! It is still just baby babble at this point, but he is more interested for the first time ever, and for that we are so thankful...progress is a beautiful word.

One thing I have learned this past year, is no matter what you have going on in your life, life goes on...the good, the bad, the sad, the scary-so many needs, and so many people to pray for-I have a few tonight...for Connor as he goes Thursday for his second treatment in Atlanta, for it to go smoothly and without any complications. Please pray for good scan results for Chloe Shiver-the family expects to hear the final reports tomorrow. Also for Connor's ST Ellen and her mother(her mother has terminal cancer and is in the hospital right now) For Janice Reynolds who lost her daughter Danyelle yesterday, 7 yrs. old, who was diagnosed last year with OMS-please pray for her during this unimaginable loss...and for some clues to what happened to little Danyelle.

I'll probably see ya'll in August, tomorrow night will be spent getting Connor ready for Atlanta and the kids ready to go to Aunt Laurie's. Thanks for checking on us and love to all.


Saturday, July 26, 2008

Dreaming, Dancing, & Decadron...

Here is Connor in the midst of the Rituximab treatment last Wednesday. He was feeling the Benedryl (of which he had a lot) and decided to snooze his way through part of the fun. When all else fails-dreamland is a great way to forget where you are! :)

Connor is doing so well-he is his regular happy and mischievous little self. Only those who know him really well, can tell he is a little bit off still-just acting tired and he has small bags under his eyes.

Samantha has a big day ahead...We are going to a ballet school to get her registered for dance classes! This has been on her mind a longgg time now, since even before she saw The Nutcracker at Christmas time. I am biased, but I think she will make a lovely ballerina. She certainly has the grace for it, and the desire. Mostly I think it will be good for her to have an outlet away from home, and all that is going on with her baby brother, to express herself.

Still waiting to hear from Atlanta on the Decadron plans...meanwhile I am trying to think of new and ingenious ways to get a 2 year old, with no verbal skills or real understanding of what is going on, to swallow these pills. We have done this before-but he is REALLY resistant to all meds now, even Tylonel is a cause for a major freak out, and usually ends with half of it running down his we might be forced to do the IV version-but I still have to get the daily antibiotics down him and possibly Pepsid as well...And unfortunately, we need to start ASAP on this, as his movements are becoming worse every day right now...

The final day of waiting is almost over and Stacy and Ryan will be home! Sunday night is when they are due in. I know it is only a month-but it is so strange how much they grow and change in such a short time. I can't wait to give them both some gigantic welcome home hugs, and I know I will sleep better when all of us are under one roof again...

Thanks for all the messages, emails, and calls to us this week. We are so blessed to have each and every one of you in our lives-praying for Connor and for us.

Love to all,

Thursday, July 24, 2008

"First Do No Harm"....

So yesterday was nerve racking, but I was making it through pretty good...the nurses were sweet and they knew I was worried about the possibility of Connor stopping breathing (or worse) during the infusion, and they tried to ease my mind by showing me all the important life-saving equipment hidden in the walls behind pretty pictures...(I never knew it was all there) So I was holding up good until this point...

Our doctor does not know the protocol (directions) for IV Decadron (the steroid Connor needs to start taking for 6 months) and we decided to put a call in to the "experts" up in IL. (the ones we couldn't go see b/c Connor can't fly)

I called Liz, she is the specialists wife/nurse practitioner/assistant, who I have spoken to before. She has always been nice-except last time I talked to her to tell her we couldn't fly with Connor, she was pretty rude, and said if we don't come now-don't bother coming later. She said this because the spinal tap they wanted to do on Connor for their research, needs to be done BEFORE the Rituximab he had yesterday is given and repeated 6 months later...they didn't seem to care about him-just their research..My son comes first and we can't hold off treatment indefinitely, because they need to do their test.

It rubbed me the wrong way-but there are only TWO OMS specialists in the whole country (possibly world) so I sucked up my anger and decided to call her today to ask how the Decadron is given and if pills are equal to the IV version.

She was nasty to me and told me she would not share the info with me and it was up to the doctor (her husband) and that even if our doctor here calls she said it was, "Highly unlikely that Dr. Pranzatelli would give him the protocol either" She said he is not their patient and they do not give that information out. She only acted this way once she found out Connor was receiving the Rituximab at that very moment-right before this, she was friendly and giving me an easier number to reach her at. ??? Aggg!

I held it in until I hung up and then a few minutes later the shock hit me! Here is possibly the ONLY man on the planet who knows what dose would be best to give Connor-but he refuses to talk to us, because Connor had the medicine that makes him ineligible for whatever study he is doing! The poor kid can't fly and even if he could I am SO glad we didn't make this trip to see these people. Our doctor here seemed shocked! He couldn't believe that another doctor didn't want speak to him about a little baby! How cold is that?

I just broke down and cried in the bathroom at the clinic-I am trying so hard to figure out what is best for my baby-and these people won't talk to us?

I am doing better today with the whole situation-I didn't really trust them anyway (bad vibes all along) soooo-on to the next plan...not quite sure what it is yet though, lol...

So-there it is, apparently when some doctors take the Hippocratic Oath, they forget about the "First Do No Harm" part. Sad.

Tough Day, Tough Boy

It was a long day yesterday-one of the longest we have had besides surgery, but Connor was amazing for us! He had a really hard time with the infusion today...once it started running the most dangerous part is the first 30-60 minutes. He was so tired that we laid down together on the tiny cot in our tiny room...and 45 min. into it-Sam sees large spots popping up everywhere on Connor-raging hives.

The nurses shut off the machine and paged the doctor for what meds to start giving (ended up being more Benedryl, more Hydro-cortisone, and Solumendol)...the doctor comes and looks concerned, but decides to restart it after a 30 min break and the hives cooling down and at a slower forward another hour and it is shut off again-this time for blood pressure problems...another cool down and then we finally finish. Then we stayed a while to make sure he was okay to leave. Whew!

He probably had his vitals signs taken over 25 times! At least they keep a very close eye on him. But he can't stand to be touched so it was hard to see him so upset ALL day...

Thanks for all the well wishes-we go back next Thursday to do this all over again, so keep em comin! Thanks to Holly for calling to check on us and Aunt Laurie for helping out with Samantha & Belle. This would be even more difficult without all the love and support.

Today Connor missed playgroup and just had a kind of relaxing day. Did us all good!
We are still waiting on a plan of action for the Decadron-How to administer, when, and how much...should figure it out by next week I hope-especially since Connor is starting to have more symptoms lately.

God Bless,

Tuesday, July 22, 2008


I HAD to post this pic of Connor-he was supposed to climb in the back of the car into his seat-but he decided to hop in the front instead! He had a great time changing all my settings on the radio and he kept peeking over to smile at me like he was saying, "Look at me Mama!" That is how I caught his proud grin, lol.

Samantha & Belle are off at Aunt Laurie's house and Connor is sound asleep. Ryan and Stacy are still in Washington-so I think this is the quietest the house has been in a while...We are going to leave early for the drive to Atlanta. I got an email from Dr. George today and we have a lot to discuss at our appointment tomorrow. I am not sure if I will be able to update tomorrow night, but I will as soon as things settle back down.

Thanks for all the prayers. And thanks Laurie for all the help you are giving us with everything.


Macy the Hospital Dog...

Connor made a new friend at the hospital today. We were sitting by the elevators (waiting for Daddy to come through the doors) and a teenage girl and her dad walked by with a beautiful black dog. She was visiting the pediatric floor and all the children! I don't know who was more shocked to see a dog in the hospital-me or Connor! He seemed to get a kick out of it and even pet her on the head. What a nice thing for that family to do-they had to get special training with their dog Macy to do this, and the kids all loved it.

The IVIG infusion went smoothly, just lasted late. We didn't get home until after 8pm...speech therapy is in the morning, and after that, spending time with Samantha, since her and Belle are going to spend the night with Aunt Lallie tomorrow. Just makes it so much easier since we have an early morning departure to Atlanta Wednesday morning. Thank you Laurie!

Connor was very subdued today and especially quiet. You could tell the last couple weeks have had an effect on him-very scared and worried looking. It is so frustrating not being able to explain any of this to him to help him understand WHY? Why Mama and Daddy have to hold him down and let nurses poke him with needles or shove tubes down him or put strange instruments on him...Yet he seems to forgive us each and every time and still looks to us for comfort from it all. Today he spent extra time in his stroller (even napped there) He just feel safe there we think, so if it helps him-we don't mind a bit.

We are asking God to keep a close watch over him on Wednesday as he receives the Rituximab treatment. We ask for no ill side effects or reactions from the medicine and for it to help him overcome his delays and help him breakthrough the barriers keeping him from speaking. For any brain damage that has been done to repair itself and for new damage to not occur. For continued improvement in his gait and with his body jerks, so that he can just be a little boy. And for his doctors to be guided to the right treatments for him to help him beat this. We have seen some remarkable improvements these past months-and we know God is listening and answering our His time, in His time---those words are so hard to remember sometimes, but sooo true, especially for Connor.

All our love,

Sunday, July 20, 2008

"Copycat Connor"

Connor is learning a lot these days-and most of it is from big sister Samantha! Check out the pic above of Connor sitting at the table like a big boy. (doesn't he look mature here?) He made some real strides this weekend in playing and me and Sam couldn't be more pleased. He showed a bigger interest in toys this weekend than he ever has before. The Fisher Price car garage that he got for Christmas was played with for the FIRST time yesterday. I wanted to cry seeing him sitting there like that letting his cars roll down the track. His speech therapist is going to be SO impressed-she was just saying the other day that she can tell he is progressing, but seeing it ourselves meant the world to us.
We will be at the hospital today for Connor's regular IVIG treatment. Not until late though-they couldn't get him in until 2pm-so we will be there until 7 or 8 pm at least. Please keep Connor in your prayers for an easy time-he is going to be pretty nervous after the trauma of the NG tube a couple weeks ago...Love to all! Debbie

Puppy Love!

Here is Belle looking good in yellow. What a sweetie pie, hard to believe she is almost 5 months old! She is doing much better in the housebreaking area and is Samantha's shadow these days. I have never in my life seen such a responsible 5 year old when it comes to puppy-care. She is amazing with Belle and takes her out, feeds her, plays with her-all WITHOUT being told to. Must be love!

Friday, July 18, 2008

Imagine It!

We took the little ones to Atlanta today for some fun at the Children's Museum of Atlanta called "Imagine It!" Samantha and Connor had a great time and we were thrilled to see them in action with all the interactive toys. Connor rolled the choo-choo's again (yeah!) and had a good time playing on slides, in the kitchen area, and some tunnels...Samantha liked the painting area, the fishing hole, and the dress-up stage with a special TV she could see herself on.

After the museum-we headed over to the Centennial Olympic Park and watched the kids play on the playground there. The park is so beautiful, I can't believe I have never been there before, lol! (How long ago were the Atlanta Olympics? He-He) We plan on taking the twins there in the fall since we liked it so much.

It was a real treat to hang out in downtown instead of Scottish Rite! :) It was good for Connor too because usually after a long drive in the car he is expecting the hospital.

Not much going on this weekend-yard work and (hopefully) some house painting projects. Trying to squeeze as much in before next weeks nutty hospital schedule. No word yet from Dr. George about when the first round of steroids will be or what hospital it will be at...we are hoping our local hospital can handle it (pray)

Love, Debbie

Wednesday, July 16, 2008

New Treatment Plan...

It has been a pretty stressful couple weeks around here-me and Sam have kept ourselves busy making TONS of decisions about Connor and his care. So I have lots of info to share.

The trip to IL to see the OMS specialist is off for now. We just don't want to put him through the possibly dangerous plane trip, until we know more about whatever this lung issue is about. Luckily, I was able to talk to them on the phone and find out what the probable treatment plan for Connor would be if we did go there.

Connor will begin Rituximab (a type of chemo) on July 23rd, next Wednesday. He will go every week for 4 weeks-for a total of 4 treatments. He will continue on IVIG (although the date is not set for that yet) He is also going to begin IV Decadron (steroids) for the next 6 months. This is given in the hospital for 3 or 4 days each month. I am worried about the side effects from all these medications-but we are at the point where if we don't do something-the OMS is going to win its battle and his immune system is going to keep attacking his brain causing even more problems for him in the long run.

We have also decided to not send him to the 2 mornings a week day school, I was so excited about him starting. Just is too risky for us, especially in the fall and winter with SO many viruses going around at the school.

More later,

Saturday, July 12, 2008

Less Hair, More Puppy!

By the title I mean that I have less hair, and that almost 5 month old puppy Belle is growing fast!
Here I am with my new haircut...Samantha was funny and said now she could tell me and Aunt Laurie apart easier! :) (My identical twin)
I also wanted to show everybody a new pic of Samantha holding Belle tonight. You can really see how much she has grown, when being held up to Samantha like that! I am not sure about her weight-but I would guess about 6 pounds by now. Times a flyin! Pretty soon she will be old enough to be fixed-we hope to get it done before her first heat, or the pit bull next door might just attack, lol! I need to try and get a pic of what this huge dog does to her...lately he has been waiting for her to get near the fence and then he lifts his leg to pee! GROSS! Luckily I have snatched her up in time before she got a shower.

Shopping Fun!

Sam and I had some shopping to do today-but managed to find some fun stuff for Sami and Connor along the way. So you are thinking, "What is so great about this that you felt the need to take pics?" :) Well, the answer is-this is the FIRST time that Connor actually played with the train table (rolled the little choo-choo along the track) Usually he stands there and checks it out, but doesn't really touch it much-never knowing quite HOW to play with it. Then, at another store, he sat down at the Lego table and didn't build tall buildings-but he had fun sorting the blocks in and out of the part they sit in.(Clap, clap) Way to go Connor! Big sister Samantha cheered him on and showed him what to do at each stop.

Friday, July 11, 2008


This is Belle and Connor enjoying the slide together! Just kidding-only Connor went down the slide, but Belle did seem pretty interested.

Thursday, July 10, 2008

Watchful Waiting...

Today I spoke to the oncologist about Connor and the issue with his lungs...He eased my mind quite a bit-he was honest and said although we do not know the significance of these blebs, most likely they will not have an impact on Connor. He looked back to the very first scans Connor had last summer and thinks they are visible then as well. They are more easily seen now, and there are about 10 of them measuring 1cm in diameter each. He wants to keep an eye on them and basically do the "watchful waiting" thing...I trust him completely and I know he would not do anything to put Connor in jeopardy. He even thinks flying will be alright-although I am wrestling with the "what-ifs", this trip is very important to Connor's well-being, so while we are still debating what me and Sam will decide to do-we have gotten the go-ahead from the doctor for the trip.

As for prayers-keep em coming! They seem to be working. :)



Wednesday, July 9, 2008

Waiting Game...

Long, hard day for Connor...2 NG tubes,2 IV's, and lots of us feeling helpless as the nurses did their procedures on him.

Met with Dr. George after, and learned that there are some questionable spots around the outside of Connor's lungs-he said they do not appear to be cancer, but more like air pockets or "blebs" (whatever that means) He is going to be contacting a lung doctor for further input on what these are, but also added that he hadn't noticed before, but they were present in scans as far back as January...same shape, location, and size...What could these spots mean? As far as we know right now, the most common thing it could be is something called lung blebs, which is a condition that makes you a ticking time bomb for a collapsed lung (pnemothorax) Also-our trip to IL is now on hold, as Connor cannot fly now. These air pockets might burst at the high altitude causing his lungs to collapse mid-flight...not a chance we are willing to take, so the trip is off indefinitely for now.

I am waiting to hear back (something I am not good at!) to see what the next step is.
New specialist? More testing? We just do not know anything at this point-which is frustrating.

We are thankful for all the prayers for Connor, praise God for no tumor growth! We are not blind to the fact that even with this alarming news-we have so much to be thankful for...he remains NED! We will get through this new challenge. Please keep Connor in your prayers, we are very afraid, but hopeful there will be a simple explanation for all this...

God Bless,

Monday, July 7, 2008

Getting Ready

Here is a pic of Connor "talking"! We were at the ice cream shop and he is making the sign for more. I know he isn't speaking yet-but I am pretty darn proud of him for picking up a few of these signs. He doesn't know exactly when to use them correctly yet-but he is trying so hard to communicate. Sometimes we will just be driving down the road and he will be doing various signs to himself...I guess he is talking to himself? Who knows for sure, only him and God...

I am packing Samantha (and Belle, lol) up for an overnight trip to Aunt Laurie's house. We leave early around 6 am for our 8:30am appt. in Atlanta and it is just easier to not deal with Sami that early for drop-offs. Laurie said she would puppy-sit as well. That was nice b/c Belle is a handful!

Connor will have a rough time. He needs the NG tube down his nose into his stomach and he has to have an IV placed (they can't use his port because the IV contrast is bad for it) So it will be a battle-for us and the nurses...then after two hours of putting the oral contrast down the NG tube, he will be sedated and the CT scan will be done at 11:30am, that part only takes about 10 minutes.

At 2 pm we have our appt. with his oncologist and will hopefully get good news that he is still NED (no evidence of disease)

Prayers welcome for no cancer anywhere.

Monkey Joe's Playgroup

Connor's speech therapy playgroup was at Monkey Joe's last Thursday and Samantha came along for the fun! All the inflatables were a little intimidating for Connor-but he managed to have a good time anyway following Samantha around. I'm not too crazy about the play gun idea, but the kids seemed to have the right idea (scary, lol)

We enjoyed the 4th of July at home with a BBQ. Me and two of my sisters thoroughly enjoyed watching all the cousins at play! Baby Adam is just learning to walk and it is a riot watching him figure it out :) He looks a little like Frankenstein with his cute baby walk.

Connor copied Adam (15 months) by pretending to "Go Nite-Nite" which thrilled me and Sam. Every time he is around Adam he learns something new-so our prayers are that he doesn't need any more chemotherapy, and will be able to go to preschool next month for a couple mornings a week. He will learn SO much more there from the other kids than I can possibly teach him at home. It is looking like it is 50/50 on the med situation, so I am trying not to get my hopes up for school for Connor...we will find out after our visit in Illinois with the OMS specialist.

We are off Tuesday to Atlanta-please pray for continued blessings that Connor is NED.

Love to all-

Friday, July 4, 2008

Uh...It's "The Day"

July 2007

July 2008

Full circle, 365 Days...In other words, the day we have been dreading in our minds...the anniversary of the day we first noticed something wrong with Connor. BBQ at Nini's house that ended up starting us on this roller coaster we haven't been able to get off of...

I will never forget the first moment I saw Connor's eyes begin jerking-I knew something wasn't right. I didn't know how bad it was, or what it was-but my baby boy was changing right before my eyes.

July 4th will always have bad memories for me and Sam...but it has something else too that I am trying to focus on this year on this "anniversary".


We were given these signs that something was wrong with our son...signs that helped us find his cancer early...We have been blessed with wonderful doctors, compassionate nurses, and a supportive family. We thank God for all He has guided us through this year. Here are some pictures of Connor-one taken last year on the 4th of July and one from a few days ago. Our little guy has come so far! Through CT scans, MIBG and Bone scans, EEG's, over 10 IVIG infusions, 6 rounds of chemotherapy, speech therapy, countless blood tests, and through almost all of it with a smile on his face-now that is a true hero! Mama, Daddy, Sissy, Bubba, & Samantha love you more than you can imagine!

Tuesday, July 1, 2008

Packing List

How do you keep a two year old entertained ALL day at the hospital? You bring the right supplies! It is one thing if they are sick and don't feel good to be in the hospital-but much harder when they are just there for treatment-it is a boring place to be after all. So here is Connor's list of must haves:

1. Yellow Blankie (he is not a blanket boy, but it helps to have a "piece of home" along when you get scared)

2. Purple Umbrella Stroller (A must! He loves to walk around the hospital pushing it. Sure it would look more manly if it was his lawn mower-but those things don't exactly fold up for easy travel, lol)

3. Ba-Ba (Yes-he still has his bottle and no I don't know when it is going bye-bye...Soon is the new answer)

4. Stroller (this is his "safe place" where he goes to calm down after having his port accessed, or any other traumatic procedure)

5. Barney DVD (He isn't really into TV at all, but will watch some Barney at the hospital...I guess it beats watching Mama look worried?)

6. Mama & Daddy (I should have put this one at the top of the list!)

We will be at The Medical Center for Connor's IVIG infusion most of the day. Samantha is all packed and ready to join the fun, lol. Please keep Connor in your prayers, that it goes as smoothly as possible-I know he will be on edge after the hard time he had a few weeks ago when the meds infiltrated under his skin. We plan on doing lots of checking to make sure he is A-O-K through the whole procedure. Also, he will be having his 5th CT scan next Tuesday to check for new tumor growth (praying he remains NED!!!)

Quiet here without Ryan and Stacy...Samantha and I are trying to stay busy to pass the time until they come home. Today we took Belle for a walk and went swimming at Nini's...Connor opted out this time! He just put his feet in like usual. Oh well-at least he gets his feet wet, right?

*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