"Tough Guy"

Yesterday was a long day (as all Atlanta clinic days are) but Connor did amazing for us once again! Even MORE amazing is that his mood has been dreadful from the early dose of steroids this week, given without his pre-meds to help even out the side-effects like rages, but he still managed to be cooperative at clinic for the Cytoxan.

His regular nurse Rebecca wasn't there-but he handled the new faces well...We needed a urine sample prior to chemo being given, and he had me and Sam cracking up in the bathroom. Eventually we succeeded in getting the little cup filled-our big boy sat on the potty and when I saw my chance, I took it and got what was needed. He looked at me like, "WHY are you doing this Mama?" :) For a little guy who JUST started sitting on the potty, we were so proud this didn't make him never want to go again, lol.

He detached himself from his nausea medicine-thank goodness it wasn't the needle in his port that got pulled out-just the connecting tube. Got that fixed up and we were on our way. He played, walked around, and ate lunch-all while the Cytoxan was being pumped into his little body. I hate that he is going thru this again, but I am happy to report his eyes are already much better-if not completely better! The steroids had already settled things down quite a bit, but they aren't holding him over long enough between doses...we still don't know how many, if any, more doses of this type of low-does chemo he may need...but we will be keeping a close eye on how his movements are doing.

His doctor does want to proceed with repeating the other chemotherapy treatment (Rituximab, the one that targets B-Cells) very soon. He said it needs to be at least a month apart from this chemo, so probably this summer sometime. So far now, we just watch and wait.

I woke up to Connor throwing up beside me at 6 am this morning, poor thing was doing so well until then. The nausea medicine does such a good job, but I sorta expected him to get sick at some point. The first two days are always the hardest on him.

Day by day his mood is improving, we hope to have a happy, healthy Connor back soon. This has been particularly hard on the other kids-seeing him doing poorly, and then watching him rage on the steroids, then the traveling and them staying off the night before so we could leave very early, and seeing Connor so sick. I am always amazed by their deep love for their baby brother-I honestly think any one of them would do anything to take away some of his suffering if they could.

Tonight I took Connor to my mothers house (Ryan and Stacy ended up staying over) and I noticed he was looking at her refrigerator and pointing and getting all excited. Then I saw what was making him so happy-a tiny magnet with the logo from his hospital in Atlanta on it! (a boy and girl holding hands in red and blue t-shirts and under it says "Childrens Healthcare of Atlanta")

It broke my heart-most kids get excited over seeing their favorite character or a McDonald's-but Connor is so used to going to the hospital, it made his day that he recognized HIS hospital...he has really grown up there and seeing him do that just made me sad for him that this is his "normal"

Please keep Connor in your prayers, especially for his upcoming CT scan on the 14th of April. Praying always for him to stay NED (no evidence of disease) and for the effects of the chemo to have the leat possible side effects, while doing what it is supposed to do-keep his immune system from attacking his innocent brain.

Love,
Debbie

More treatments in Atlanta tomorrow

Going tomorrow to Atlanta...the doctor called me today and we had a good talk about the pros and cons of each medicine. In the end we decided that the Cytoxan has the best chance of stopping this relapse quickly. We will also probably do the Rituximab when this one is finished since we had such good cognitive effects from it last summer.

Not sure yet how many treatments he will have-but please keep him in your prayers for the least possible side effects and the BEST possible results.

Gotta be there at 8am, so the kids are spending the night at Aunt Laurie's tonight. (thanks La)

It is lose-dose chemo, so he shouldn't get too sick from it. Last time he had about 2 rough days of nausea...hopefully the Zofran will be enough to keep it under control.

It has been tough around here-he is just a mess from the steroids. Uncontrollable, fitful, crying, sad, mean, tired, it goes on and on. Usually he has the Zyprexa on board before he starts the steroids, which help counteract the side-effects. This time we started them sooner and unexpectedly-now we know how much of a difference the anti-psychotics make with the steroids for him.

I'll update as soon as possible and let you know how he is doing-pray for relief of these eye symptoms specifically please...Also, Connor's OMS buddies Travon and Jymani aren't doing well either, Jymani is in the hospital and Travon's family is battling to get their insurance to pay for his medicine he needs.

Love,
Debbie

Connor is not doing good...

It looks like he may be having a relapse of his OMS symptoms.

His eyes are moving uncontrollably (the opsoclonus) This is not good-it is a sign that more damage is occurring to his little brain. I emailed the doctor last night and I am about to send him a video of Connor this morning and his eyes. Hopefully he will have some good ideas of where we should go next...

I can't stand seeing him like this-he can't watch TV (he hasn't for a while now) and my nerves are just shot from watching him like a hawk.

Edited to add:

I heard back from the nurse and she said his doctor said to start his steroids now instead of waiting til April 1st. And he is looking into what to do next. Then the nurse said he wanted to know if we wanted to move his scan up closer-so I asked is he thinking the tumor is back? And it was obvious he thought it might be a possibility...but I don't think that is what is causing this...OMS is just like this, tends to come and go and keep you on your toes.

Just heard back again...He is thinking about starting Connor on Imuran, low-dose Cytoxan, and/or repeating the Rituximab he had last August are the three things he is looking into. All 3 of these are chemotherapy drugs. Looks like we are back in the fight bigtime.

Please say a prayer for the doctor to guide us in the right direction. And for poor Connor to get some relief quickly from the eyes movements-it is obviously bothering him as he keeps rubbing his eyes after the jerks occur.

He was doing so well-he has had a yucky nose so maybe that is what triggered the symptoms to go from bad to worse so quickly. His doctor is taking this very seriously and we have confidence in him finding the right mix of meds to get us over this setback.

Love to all-
Debbie

Our clinic trip last week

We had an VERY different trip to the hospital last week. Usually it is a high stress thing to go to clinic because even after all this time-Connor freaks out SO bad over vital signs and getting his port accessed. Actually-usually once the port stuff is over he does a bit better-but not much...

So we get there and Connor is pretty calm for a change...we get called back to the infusion area and it helps that his favorite vital signs nurse is there. Then-he cooperates! He held out his arm for the blood pressure, wore the thing on his finger for his oxygen level (BIGGEST step here-he HATES that with a passion) and (drum roll please?) got on the big boy scale AND stood next to the growth chart to get his height measured. Woo-Hoo!

He did great ALL day and barely cried for having his port accessed. I guess he is either maturing or getting used to it all. Which is good since we are in for the long-haul here.

Been busy with Relay for Life this week. Thanks to everybody who has donated on Connor's behalf. We can't wait to go again this year (May 15, 2009) Last year he was still so little-this year he looks like such a big boy.

More later...
Love,
Deb

"Welcome To Holland"

I thought this was very inspiring and right on target about how it feels to have a developmentally delayed child...

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Snow in Columbus, Georgia!

I wanted to post these funny pics (funny because we never get snow here in our part of the country) Almost never anyway-last time it snowed a significant amount was about 8 years ago. So this was Samantha and Connor's first time playing in the snow...Me and Samantha made this pitiful little snowman :-) But had a great time in the process! Connor is still in the middle of his "footie-pajama obsession" and decided to enjoy the snow from the inside of his little wagon since he had no shoes on, lol. He stayed out a long time though-Daddy wheeled him around the neighborhood and he stared in awe at all the pretty white snow.

I admit I have had a rough week this week...my schedule actually slowed down a bit for a change, but it seemed to only give me more time to dwell on worrying...never a good thing! Add to that what I will refer to as "The Nail Polish Incident"

(in case you are wondering what this is, come over to my house and look at our carpet) I guess I am a true optimist at heart-because my first thought was "It could have been worse"...

Connor is okay-he didn't drink it thank goodness, or pour it on the dog, what's a little carpet in the long-run? That is the good thing about facing childhood cancer and a rare condition like OMS-you don't get as upset about the small stuff anymore. Things aren't as important-people are. So if you come to my house and there is permanent marker on the walls, nail polish on the floor, and pictures hanging on the wall with no glass on them anymore, lol, you know why. Connor is in a scary stage right now-big enough to get into everything and curious enough to try! We cannot take our eyes off him for a minute-it is like a perpetual state of toddler-hood around here and THAT scares me more than the messes.

He is a soon to be preschooler and it is becoming more and more obvious how behind he is compared to other kids his age. We ARE seeing improvements though-he is understanding SO much more than even a month ago. Thank goodness!!! He has been able to follow short directions like throwing something away-or getting a diaper from his room. Little things, but they mean SO much to us.

We are about to be getting ready for Relay For Life 2009! Last year was a new experience for me, this year I feel better prepared as to what is involved. I'll try and post our pictures from last year again soon-Connor was so cute in his little "Survivors T-Shirt" and he looked so much younger than he does now-he still had his baby curls :)

Love to All-
Deb

New happenings...

Last week I checked out a place I just heard about that does pediatric care for medically fragile children RIGHT here in town! It just opened a year and half ago, but they have centers all over the place, it is called Pediatria.

If it works out it would mean getting local or possibly even home infusions for Connor, instead of all the traveling we are doing right now to Atlanta. It is so hard, packing the kids up, juggling all the kids around the night before, and leaving at the crack of dawn (usually 5 am) and coming home late, picking everybody up, unpacking, it is just so hard.

And get this-they even babysit at the center! It is staffed by nurses and they take care of all the kids...it is like a daycare/hospital center. So I would have an option for a place to leave him if I need a break and not have to worry about them not being able to deal with him.

It was amazing! Bright, cheery, clean, open, nice nurses...big playground, indoor playground as well...

They have 11 kids there now and they are ALL on Medicaid or have that grant we are trying to get (Katie Beckett) so they were unsure about Connor since he has regular insurance. (doesn't that stink that they PREFER Medicaid to people that don't qualify? Agg! another story, lol)

The RN called me and said the my health insurance is okay with unlimited home infusions. I am so excited. She said once we (hopefully) get Katie Beckett that they will be able to provide more for us like the respite care.

Next hurdle-making sure the pharmacy we use to mix the meds is ok with our insurance-don't want to get stuck with that bill!

Other than waiting to hear from STEPS and doing speech therapy as usual-not much going on since we got back from Disney. It has been a quiet week for a change-Connor had a rough night last night (the first night off the Zyprexa is always a rough one) and kept us up most of the night. Me and Sam were zombies today.

Connor is pretty bloated right now from the steroids this month-and was extremely hungry this time as well poor thing. At his cousins birthday party last Saturday, he ran and got himself a fork and dug into the cake before we even got to sing Happy Birthday (sorry Erin and Adam)

Thanks for checking on us and keeping Connor in your prayers.

Debbie

Another little one...

Cody lost his battle during the night. Please lend some support to his family...glad he is free of pain, but oh how his family will miss him. Just click on his name for his site.

The Test

So we had the STEPS evaluation this morning. Much nicer atmosphere than the other neuropsych testing he had in January.

It was set up like a big playroom (playhouse, teeter-totter, trikes, developmental toys, etc...) And the people there were awesome (speech therapist, occupational therapist, psychologist, and a case worker)

Me and Sam did paperwork and answered questions at one table. Connor sat at another table and played with the 3 ladies. He liked that! Only problem was his attention span was so short even some of the stuff he can do-he wouldn't if he didn't feel like it. It took 2 hours for them to get the testing done.

It was depressing answering all the questions-as usual. So much he can't do and so many behaviors that show he is very delayed. But he did do better than in January-so I am glad he is improving. Now the waiting begins...We don't have the date yet of the meeting to discuss the results-but I will post when I know more. Thanks for all the prayers and well wishes-this stuff is so stressful on me and especially Connor.

We started his Decadron tonight-hopefully this will be a smooth cycle without too much pain. He was funny today-he insisted on wearing his Mickey shirt from Disney Wolrd AGAIN today, lol. 3rd time since Saturday! :)

Deb

All the latest

Thanks for all the well wishes for our trip to Florida. It was amazing and so great to spend time as a family together. The twins had a fun Disney birthday last Saturday (I cannot believe they are 14!) Samantha was thrilled, amazed, and so happy to be there-made it all so special seeing her smiling face.

Connor was a bit overwhelmed. We forced him onto Winnie the Pooh and It's a Small World and then I couldn't do it anymore and we didn't make him-he was just too scared. OMG @the screaming! He did LOVE Mickey's Toontown and Ariel's Grotto thank goodness. He played in the water and walked through Minnie's house and loved the little play area there. We were also able to get him a special sticker for his stroller to be used as a wheelchair and he was able to "drive" right up to all the attractions and places the strollers aren't usually allowed. That helped a ton! Even though he didn't ride anything-he had a good time. He got soaked in Ariel's play area and a bit later we were in a shop and he reached out to grab a pair of Mickey Crocs, lol. He wanted his wet shoes off :) So I got him the little shoes and a firetruck he HAD to have and that truck kept him entertained the rest of the day.

We go in the morning for more evaluations on Connor.

It is his eval to see what services he will qualify for in the public school system. At age 3 they are eligible for speech, occupational, and physical therapy in school. But it is tricky who gets what and how often and for what hours.

We have been told since he is more severe he will get 3 full days (Monday, Wednesday, and Friday) with speech and occupational therapy once a week-but nothing is definate until another big meeting to discuss the results of THIS meeting in about a month and half-right before his birthday on April 26th. Whew! They are keeping me hopping!

There are going to be so many people there tomorrow I am afraid it is going to freak him out. And he is supposed to sit with THEM at one table while me and Sam are at another table farther away. They will be using six different tests to score him on-and them averaging them together. This is good because he might not do good on one method of testing-on something he actually knows how to do, you know?

So I have stayed busy with the trip, still dealing with our insurance company over speech therapy for Connor, Samantha got her cast off (yeah!), trying to get all our paperwork together for the medical grant, the house, the dog (who got sick at the vets while we were gone) speech therapy and playgroup, ballet lessons, and various other tasks, lol. Too much! But I like being busy so things are good.

Round 8 of Decadron is starting-I am hoping it is a smooth week-even with the steroid rages and aches he gets. He is handling it better though on the Zyprexa and the Motrin and Vicadin always help out.

We miss all of you-our real life friends and our internet buddies. You will never know how much ALL of you mean to us.

Braedon is hanging on Praise the Lord, Deqlan had clean scans (Go Deqlan!), Makhi is in Springfield and we hope to hear good news by this weekend, Travon has been experiencing more OMS symptoms lately and needs prayers as well...you can read about all our little friends if you go to the "Check it out" section. All these soldiers need our prayers for good health!

As some of you know-our restaurant caught fire this afternoon. All is okay-thanks to the firemen who responded. Thanks for the calls and we hope to have it all running smoothly quickly.

Love,
Debbie