Wednesday, April 2, 2008

Gutt wrenching feeling...

People have asked me time and time again, "how do you and Diane do it?" My usual answer is, "we just do." Every once and a while I ask myself the same question. Today was one of those days. Just when we feel like we are moving in the right direction, we get kicked in the teeth again. We had a pretty good day yesterday. The news overall was pretty good. The ultrasound came back good and the blood numbers changed but the doctor was not alarmed because she said that the antibiotics can cause such changes. Last night we administered the last batch of meds. We set the alarm for 1am to get up and unhook the meds. When I get up to turn the light on Diane mentions to me that Cody has a new bump on his collar bone. Being half asleep I told Diane that it wasn't the time to tell me this and I totally forgot about it today. Then she called me at work. She said that they wanted to take Cody in to get a CT scan today but they couldn't fit him in until tomorrow. I just felt like I was kicked in the stomach. Cody just can't get a break. Every time he gets through one thing something else comes up. The good thing is that the lump feels hard like it is calcium or bone deposit. We just won't know for sure until they get a look at it. So, this means we have to go in for 8am and wait until they can fit us in.
Then, next week he has to get MIBG, MRI and bone scan. Then they want him up in New York next Friday for a bone marrow test. We will stay the weekend and start the antibody infusions the next week. Just when we think we will have a few weeks of family time it all starts again. That is one of the hardest things about of all of this. This all just seems like an evil, cruel joke that was never funny or fair. I just keep asking myself "why?"

Here are few pictures for last weekend.


Anonymous said...

OOOOH !! That cone sure looks good !! Hope he was able to eat most of it !!
Sorry you have another worry with the bone bump. You persevere because there is no greater love than a parent's for a child. And you and Diane do it all with grace and even humor.
Cody is such a fighter ! I love the pirate pix !! Positive thoughts and prayers continue for all of you! G2G

BIG MO said...

That certainly is a mean looking
PIRATE you have there!!!!!! I'm so
sorry to hear about the lump. I'll be waiting to hear the report on
that. Is he eating any better?
Please give everyone a Hug &Kiss for.We all feel so helpless. I guess we must leave it up to GOD
and the DR'S.
God Bless You all,

Gregory said...

Hey Deck,

Been awhile since I last checked in (sorry about that) but nice to see some pics there and Cody being home. Wait and see what the bump on the collarbone is before worrying too much. Offering more prayers from Korea! Take care...

Gregory (Pudov)

Dottie O said...

Praying that the new bump is nothing to be alarmed about. Cody puts on a good "mean face" doesn't he?

Ice cream = fun. And that looked like a lot of ice cream!


Anonymous said...

Cody will keep fighting...Just look at that pirate face. He looks ready to take the world on. Take a deep breath... We are all praying for ya'll. Just remember that when you feel punched in the gut.

Susan and Jonathan

The 311 Boys Mom said...

I love the Spiderman/Pirate combo!!!

My Parkers 2 favorite things.

and to add ice cream...... holy macral!

Good luck with the scans.......

remember, Diane's built different than you.....she prepares for the worst & needs immediate action to make sure she's wrong........

Gettin Older said...

Mickey, Continued thoughts, hopes and prayers. I just finished telling another person in my office about your fighter while explaining about my band.

I think I need some ice cream.


Anonymous said...

What great pics!!! AND he has an icecream :-)

Hang in there Mick! You are just being a Dad - you're allowed to get down in the dumps once in a while, ya know? But just take a look at your gorgeous boy, your wife, and those other beautiful children and you will see that you have a lot to be thankful for! :-)

I'm praying for you all!!

Anonymous said...

Hope this rainy day here in DC will bring good news regarding Cody. Positive thoughts directed his way!!

Hugs to Cody, Pat (ACCA-NCC)