"Going Gray"

Sorry for the sporadic posting-no computer lately, and the laptap frustrates me...spent yesterday running errands and dealing with some restaurant stuff. One of my errands was taking Connor to get his hair trimmed. In the bright salon lighting I was horrified to look down at the top of Connor's head and see what is causing the "highlighed" look several people have commented on-GRAY HAIR! Not a whole lot-but more than any 2 yr. old should have. :( His hairdresser Deb looked surprised, until I told her that it was probably caused by the latest round of treatments in Atlanta. It made me feel sad though, I guess seeing an outward sign of how potent and powerful these treatments can be on such little bodies...
Speech went well yesterday, we are going to try and get Connor to use his sign language on his own-without prompting...so far no luck-but Stacy is hard at work teaching him! She is sooo good with him and loves him so much.

At the restaurant today we had a visit from a couple whose grandson has OMS and lives in Kentucky. Sam met him last year at church, when the man prayed out loud for "All children with OMS" Sam was shocked-given how rare and unknown this disease is...I spoke to him on the phone last year, but it was nice to meet him today. His grandson is 4 and just started to walk-although he still has no language. Anyway, it was nice to speak to someone familiar with OMS.

Happy Labor Day Weekend!!!

Busy Bees!

Been lively at our house this week! Ryan & Stacy had a great time at sibling camp-totally worth the 10+ hours Sam spent getting them there and back! (Yes, I said 10+!)LOL :) Ryan had the most fun practicing his archery and Stacy liked the arts and crafts. Luckily-it mostly just sprinkled and the downpour began for them on the way home Sunday.

I slipped in some doggy water and broke a toe and Samantha has a back to school bug that kept her home today. Only the 3rd week of school, but it was bound to happen. I see flu shots in the near future for our family (minus Connor-he can't have one) Now we are hoping he doesn't catch Samantha's cold-it is so hard keeping him healthy this time of year.

In the morning we have speech, and some transitional paperwork to sign, to begin the process of getting him referred into the STEPS program, for when he turns 3 next April. It is a long process we have heard. Our hope is to get him into the program at Samantha's school, it will be great if they could be at the same location! (Great for Mommy!)

The restaurant is keeping us hopping busy too these days! If you get a chance or happen to drive by-take a look at "La Margarita Mexican Restaurant" over on Sidney Simons Blvd. It is bittersweet saying good-bye to The Mediterranean Cafe-but we are excited for a brand new start. We are doing some remodeling right now and hope to be open by this weekend. When I have more info-I'll pass it on...hope to see you there soon!

Take care,
Debbie

"Running For Zoe"

The time is near for the Virginia Beach Rock 'n' Roll Half Marathon
Health & Fitness Expo: August 29 & 30, 2008
Race: August 31, 2008

This fundraiser is for our little friend, Zoe Cadence Walenius, cancer survivor and OMS warrior. Check out her site-she is a doll! Keep fighting Zoe, we are praying for you.

Off to Camp Twin Lakes!

Yesterday we took the kids on a long drive about an hour from Atlanta, to the Camp Sunshine sibling camp at Camp Twin Lakes. We had a few hassles getting there (Stacy broke her glasses and Ryan realized he forgot to bring EVERYTHING about an hour into the 3 hour drive) It wasn't all bad-at least we realized how much the kids were looking forward to the weekend, when they were faced with the possibility of not going because of all the setbacks, lol. Stacy decided she could see well enough as long as she avoided archery :) (afraid she might shoot someone) and we stopped in Newnan and re-bought all the stuff Ryan needed. He felt so bad and is going to do some odd jobs to try and earn some money to pay us back (hint, hint if any body needs an able bodied 13 yr. old to help out with stuff-Ryan is available) :)

We got there, and the kids were treated so wonderful! Specially made engraved name tags, for all the brothers and sisters attending were a nice touch. They got their cabin assignments and met their counselors-then we all went to do some exploring. It was a beautiful place, tennis courts, lake, pool with slide, archery, boating, arts and crafts for the kids to do, etc...I can't wait to hear all about it tomorrow. Only downside has been the weather-but I hope the kids had fun even if they did get a little damp.

I just think it is awesome that this organization cares about ALL the children in cancer affected families. The brothers and sisters of these kids go through so much-they deserve every bit of fun they can get. Thanks Camp Sunshine!

Cool Quote

"A mother understands....what a child does not say."

I saw this tonight on a special needs message board and it struck me right away. Sure sums up it up, huh? I can see the frustration in Connor these days, especially with the moodiness-it makes it even more difficult to deal with the lack of language. Poor guy...tonight I went to Samantha's kindergarten orientation and it scared the daylights out of me! Not for her thank goodness-but for Connor's future. So much to learn, so far to go to catch up...overwhelming to put it mildly. Trying to take it day by day, but some days are tougher than others...will he learn to talk? To count? To read? I hope and pray he will!

Remembering an Angel...

There are many, many children who have touched our life since we first heard the word neuroblastoma-a whole community of different families with their own stories to tell. Today I wanted to share one of them with you, a little boy named Lucas Tran. Here is an entry from his mothers Caring Bridge page, through which SO many got to know this special boy who loved vacuum cleaners more than anything! His uncle lived with him and created a wonderful tribute to him through the pictures he took. If you can-take a few minutes and remember Lucas.
Debbie


SUNDAY, JULY 13, 2008 10:12 PM, PDT
My only sibling, Tommy (we call him Thong at home), who was a mechanical engineer turned professional photographer, created a story of Lucas' life from the beautiful photos he took (minus the last picture which was taken by Chinh). Tommy lived with us for about a year before Kira arrived and frequently visited afterward. He was here shortly after Lucas was born, shortly after diagnosis, during surgery in NY, spent most of the summer in NY with us last year, and cut his trip in Africa short when I told him Lucas was dying. Lucas was very fond of Tommy and gave him an endearing nickname that he made up--Dodi (dough-dee). In addition to hiding from Tommy and being chased by him, Lucas loved playing with Tommy's tripod, camera with an enormous lens and detached flash, pda phone, and stickering his suitcase. Thanks for the tribute Thong and, more importantly, for being such a big part of Lucas' life (and ours). Click here to view the photos and captions. You may need to maximize your window to see the captions. Warning: some of the photos are from the time of his death.

http://www.tommyimages.com/Projects/Lucas_Tran/slides/001-NN_0076-Neuroblastoma.html

"How To Entertain a Toddler"

Me & Sam have been having to get creative on all these trips back and forth to Atlanta with Connor. He is good in the car, but gets pretty antsy after sitting for a couple hours...this pic is from our last trip-he got a kick out of me putting sunglasses on his Barney toy, lol. He does look silly, doesn't he? :)

No results back on the blood cultures-but Connor's fever was down and other than not eating much, he was doing good. Still moody, but walking was slightly improved (yah!) He even walked all the way from the car to the school to pick up Samantha today.

Speech therapy was this morning-no real strides in that area, but we did get some useful advice on dealing with his moodiness and on practicing sharing. Trying to teach sharing to a two year old on steroids is not easy!

We set up a "practice" sharing session tonight with Connor, Samantha, and Stacy-they all sat down to color with markers. Connor was leaping over the table to attack his sisters to give you an idea how that went, lol! It did cool off later on, and I thanked my helpers for their part in the practicing...Stacy suggested earplugs next time. Good idea!

It is very bittersweet to see school starting and Connor not able to go this year...hopefully next year will be his turn. In the meantime-I am working with him every day to try and teach him things he needs to learn. I see him improving-just so slowly it is frustrating. Please keep praying for him to learn some words and understand more-these prayers are badly needed!

God Bless,
Debbie

No Break for the Weary...

I think I jinxed things for Connor by saying how great it was that he was going to get a break from the hospital for 4 whole weeks. He spiked a fever over the weekend and since he has a compromised immune system from the chemo & steroids, along with a port...off to the hospital we went to make sure it isn't a line infection.

I called Atlanta and they said to take him straight in and he spent the morning getting blood cultures, antibiotics, and a chest x-ray done. We are wiped out! If the blood cultures come back positive-he goes back for an inpatient stay for more antibiotics. (but we would have to do this in Atlanta)

I think he just has a virus since his immune system is so down right now-but if there is an infection in his port, better safe than sorry...

Samantha had her first really good day at school today! :) That was especially good news after the difficult morning with Connor.I am so proud of her-she is being so brave!

That is about it, hoping the hurricane stays far, far, away from our neck of the woods since Ryan and Stacy are going to Camp Sunshine this weekend for sibling camp. They are starting to get excited about going since we got their supplies all organized. I got them rain ponchos in case of rain and they keep making fun of them, lol. I bet they won't be laughing if it starts pouring rain while they are there!

We are still seeing side effects from the steroids-Connor has had a temper like we have never seen before! He has been very possessive for the first time ever as well, especially with his markers. I am hoping the temper will fade as the month goes on until the next round.

Love and blessings,
Debbie

Last Round is Over!

Here is a pic of Connor & Daddy relaxing together at clinic. Everything went pretty smoothly in Atlanta last Thursday. Only problem that came up is that it turns out Connor is allergic to the antibiotic he is supposed to take for the next 6 months, while his immune system is so suppressed ...he broke out in a rash all over and was itching like crazy. The PA saw him and suggested IV antibiotics that are given once a month, that have the same effect and ward off a certain kind of dangerous pneumonia. That is perfect for him, because they can put it through his port once a month during IVIG anyway! With the added bonus of us not having to torture him at home getting him to take his medicine-but it will add about an hour to his IVIG infusion.

So now-we watch and wait, and of course pray-that all these treatments work some kind of magic on Connor's development.

Our restaurant was robbed this morning, very early. Someone threw a brick through the glass door and took what they wanted. Some people are unbelievable! What a way to start the weekend, huh? The police and insurance have been contacted and hopefully the robber(s) will be caught. Doubt it-but I can hope.

Samantha's first week of Kindergarten is over. It was rough on her, but she made it. She starts getting upset about 1pm every day (when she used to get out of school) so I hope once she gets used to things, it will be easier for her.
Ryan and Stacy's week went okay-about the same as last year so far. They ALL seem to be enjoying the weekend. Thanks for checking on us!

Love,
Debbie

Cutie Connor!

Someone has been hanging around the doggy too much! :) I took this picture tonight while trying to brush Connor's teeth. First he decided the toothbrush would be fun to carry in his mouth like a dog bone...then, he was crawling around like a puppy...and last, but not least-decided to go nite-nite like the puppy! And THAT is when I got this pic in the dog bed, awww. I love you Connor!

Long infusion(s) day today...I'll update later on how it goes. Please keep all the kiddos in your thoughts today, especially Samantha. She is trying so very hard to adjust to Kindergarten-made especially hard by a clinic day during her first week. Love you baby girl!

Stacy and Ryan are doing good in school, so far-a few hiccups, but nothing unmanageable. Can't wait for the weekend when we are all together again with no hospital worries for a bit! Love you both so, so much!

Thanks Aunt Laurie and Aunt Kristi for helping out this week! Ya'll are the best.

"The Couch Crew"

Can you believe it? I got a picture of the kids all together! Doesn't happen often,lol...It was back to school this week for Ryan, Stacy, and Samantha-everyone is having a rough time getting used to the newness of it all. I hope by the weeks end, they will all feel more settled in.

Tomorrow night is another sleepover for the kids at Aunt Lallie's, we go very early Thursday morning for the last infusion of Rituximab and another infusion of IVIG. Long day it will be! Then-A WHOLE MONTH BREAK! Yippee! I'll hardly know what to do-Just kidding, I'll find lots!

I heard from our nurse here at the local hospital yesterday and it was bad news. They have "officially" shut down the oncology unit for good this time (where we do IVIG most of the time) She is the last nurse to leave, and we will miss her. The timing isn't too bad for us though because Connor will now be getting IVIG every 4 weeks instead of every 3-so we had already planned on doing them in Atlanta since they will coincide with doctors appointments anyway. But it is sad that a town as big as ours won't be able to care for kids with these problems anymore.

No speech going on since Connor has been too busy with all his Atlanta appointments...next week we will get back on track with it I hope.

We are getting very concerned about a strange symptom Connor is having. It has been going on for about two months now and it is so scary listening to it when it happens.
Out of the blue-he will make this gasping for breath sound. Almost like half a hiccup sound. Happens randomly during the day-but all day long...probably at least 20 times a day I would guess. We just noticed a couple weeks ago that during these gasps he is usually having a body jerk of some kind (like his whole body will shudder or a part of his body will jerk) It happens so quickly-and most people either think he is playing or being silly, but he is not. We told the doctor about it last week and he listened to him breath and says his breathing sounds fine-but if this is OMS hitting his lungs, it is scary to us-even if his breathing sounds normal in between...another thing to investigate...

The Decadron finished with a bang! It was rough on Connor (and us) but he did great. Now he starts on his antibiotics that he will take every until he is off the steroids.

All for now!
Debbie

Ut-oh! It's Mr. Crankypants...

Got off to a great start today-we really didn't notice any change in personality (he had his first does around 11:30 am) It became noticeable around dinnertime-he suddenly was crying, irritable, and just plain miserable. Poor Sam lost his temper with him, it was hard not too, but he felt bad after, for hollering at him... I got Connor in the tub and he went to bed good, thank goodness! So far he is still asleep :) Now we are praying for patience to get us through these few days of "Cranky-Connor" I plan on doing Tylenol tomorrow to help with the flu-like achy symptoms steroids can cause-maybe that will help.

I also need to get hold of the pharmacy...I didn't notice until we went to give him his morning pill that it said on the bottle for him to take THREE A DAYinstead of the two it was supposed to be. We figured out why though-it is 4mg tablets instead of 6mg! I wish the pharmacist had at least told me. Getting two down him is a lot harder than one at a time! Agg!

All for now-love and blessings!
Debbie

True Story: I'm a Chicken!

Well-I didn't do it...I didn't give Connor his pills today. Part of it was because I didn't have the strong tasting yogurt in the house that I hide it in and part of it was that I decided I wanted backup around in case he went crazy (can you tell I am expecting the worst, lol?) So, tomorrow morning is the new start day-with Daddy home and the Trix yogurt waiting in the fridge.
It is only for 3 days-so it won't be like the last time-thank goodness for that!

We plan on having a relaxing weekend together as a family. The last few weeks have been busy with appointments, house painting going on, and just lots of chaos. So we plan on doing some last minute school shopping, going swimming, and church on Sunday.

Speaking of church-I have a funny story to tell on the subject. A lot of people that know Connor, and what a handful he can be, are surprised he can make it through a church service! :) It is kinda funny! We don' have a nursery, so yes-he is with us in the pew for the entire time. My only guess is it must be God watching over us and being really happy we are there, and He helps keep Connor calm enough to last through most of the service. LOL

I hope he can keep going with us while his immune system is so suppressed for the next six months...sometimes it makes me really mad that other people come around to places like church and school when they are sneezing and coughing like crazy-even if I didn't have a child I was trying to keep away from all the wicked germs out there-it annoys me. I wish Connor would leave a mask on his face for certain situations-but anyone who knows him also knows that is not going to happen anytime soon! :)

Take care,
Debbie

"Oh no! I'm back here AGAIN?"

Got off to a good start this morning-even had some silliness in the car on the way to Atlanta...Connor has discovered (against our liking) that chewing gum can be VERY entertaining. So many things to do with it, such as-chew it, taste it, stretch it, stick it in my hair, etc...He made this discovery while digging through Stacy's purse-and now a beast has been unleashed! :) No pack of gum escapes his watchful eyes-he must have a piece if he even sees a gum wrapper, lol, so as I was collecting trash in the car during the ride-he spotted it...me, desperate to keep him quiet-gave in. I wish I had taken pics of the silliness that came next, he was laughing and cracking up at my horror over his fun with the gum. This story does not have a happy ending-after 10 minutes of pure joy, he swallowed it of course, and was very sad.

Infusion went smoothly, thank you for the prayers for Connor today. He even was happy entering the building-until I took him to the bathroom to change his diaper and he spotted a child on a gurney coming out of sedation. He let out a blood curdling scream-and was inconsolable for a bit. He was looking at me like, "Oh no! I'm back here AGAIN?" Seeing the gurney really bothered him-I guess he knew he was next?

It was wild in the clinic today-the USA network was there filming a documentary for TV. They brought so much equipment in that the whole play area was blocked off...so we hung out in our room for most of the day.

Connor will start the Decadron this Friday. Dr. George was kind enough to have a plan in place for if Connor goes completely nuts while he is taking it ("Roid Rage") He is also starting back on his 3 X per week antibiotic to ward off any problems while his immune system is so low. I hope Connor doesn't have major problems with thrush in his mouth like last time he was on steroids for a long time...please keep the prayers coming for his health to remain well and for him to handle the steroids as best as he can. I am pretty anxious about the possibility of a virus knocking him down-especially with fall and winter approaching. All we can do is wash our hands a lot and try and keep him from getting infected from others.

On a positive note-Connor now knows how to sign about 8 words! Yippee! He is going to be scheduled for some tests to rate where he is at right now developmentally and again in 6 months. The doctor wants some kind of documentation of his progress on this new course of treatment. Not sure of the date for this yet...

Thanks for checking on us! And a great big thank you to Nini for helping out with the kiddos.

Love,
Debbie

"On The Road Again"

Busy days! Sorry for the lack of updates...more computer problems (Agg!) I am on the dreaded laptop right now, lol, I am so bad at this keyboard so please forgive any mistakes. :)

Round #3 is tomorrow morning in Atlanta...feels good to be almost 3/4 done with this treatment. Connor is having some difficulties with his walking. We plan to start the steroids this weekend, which will hopefully get him up on his feet again. I have been hesitent to type it all out-to make it more "real" but he is really struggling right now and prayers are needed for him to start moving in the right direction,instead of backsliding like this...two steps forward-three steps back is sort of the feeling these days.

Nini has the rest of the kiddos for the night (Thanks Mom!) I know they are in good hands and having a great time, so that eases my mind. We registered for school today and they start Monday. So exciting! Kindergarten for Samantha and 8th grade for Ryan and Stacy. Next year the twins will be in high school-I feel old! LOL

Thanks for all the loving messages and calls-it helps us so much.
God bless,
Debbie

My Little Helper...

Connor is doing a good job here of helping to feed Belle. I love watching the two of them interacting together-so cute!
The house is still in painting chaos-but an end is in sight. Almost done! Only the garage is left...
All the kids are doing well-just enjoying the last bit of summer before school starts. No big plans this weekend-just want to enjoy being home.
Sad news...Heaven gained a beautiful angel today. Katie Krize amazed us all with her strength to fight and live life to the fullest. Her smile could light up a room! Please keep her devoted and loving family in your prayers.
www.caringbridge.org/visit/katiekrize