Friday, January 16, 2009

Some info......

Well as you have noticed I have been slacking when it comes to posting. There have been a few things going on since I posted the last time. Cody had to spend the night on Wednesday because they did a live biopsy. He fared pretty well through the process. They wanted to keep him overnight to monitor his blood pressure and just in case he had any bleeding. The liver is a very vascular organ. I wanted to get the results of that test before I posted again. So I took him in this morning for his 4th radiation session. We also went in and had blood drawn to look at his liver numbers. His bilirubin has been very high and he has not been able to start chemo until they have determined what it is that is causing it. His skin and eyes have a yellow tint to them. The problem is the liver is what processes the chemo and if it isn't working he will develop high toxin levels in his body from the chemo. So the results of the biopsy are such that they don't see any infection or other byproducts of a very serious condition that could have been causing this problem. All the liver experts got together with one of Cody's doctors. They have come to the conclusion that this problem was drug induced. Meaning, there was something Cody has been taking that has put his liver in this condition. We all think it was the Beta Glucan that he had to drink before his 3f8 treatments. That being said Dr. Gonzales has found a chemo drug that Cody has had before and he tolerated it pretty well. This drug is activated in the liver but processed out of the body through the kidneys. This is ideal. He will start chemo treatment next Wednesday. He will get the first infusion at the clinic and then he will be able to get the rest at home. After 3 weeks he will have a new set of scans and we will determine how the beast is responding to the treatment.

Now lets look at the bigger picture here. Between all the scans, liver biopsy and bone marrow biopsy this is what we know. Cody has no trace of neuroblastoma in his liver or any other organ in his body. They have found traces in both legs and in his pelvic bone. This is a very critical stage. He must begin chemo to stop the advance of the beast. Everyday that goes by this disease is multiplying and growing.

The future does not look good for our boy. I know the track record of this disease and I've seen others at this point in their treatment. I have not given up hope but hope is now dwindling. We are running out of options for treatment. There is no silver bullet or cure in sight. We are now at a point when we ask ourselves and the doctors "when do we just let Cody enjoy the time he has and let him be a little boy." I want him to have time without being pocked and subjecting him to all the medicine and procedures. I want him to physically be able to enjoy life without struggling.

This is a very hard time. Please excuse me if I don't post everyday.

I thank you all very much for checking in and praying for Cody. Please continue...

25 comments:

BIG MO said...

Again I just don't know what to say
It breaks my heart to read your comment today. All I can say is,
we will keep on praying and hope there is a way this will all turn around and our BIG GUY will get well and be forever rid of the beast. God Bless All of You.
LOVE, MOM

elizabethnyc said...

Mickey, I don't know what to say either. I've just GOT to believe that there's hope and and that there treatments that will help your Cody.

I'm keeping all of you in my prayers every day, and wish there was something more concrete I could do to help.

Hugs to all,
Elizabeth

The Murrant-Johnson's said...

Mic,

As Mom said, I'm not sure what to say right now. It was hard enough reading your post.
we will keep praying for you guys, and stay strong. I know it is hard to believe,but we got to keep hoping that something to get rid of this BEAST.

Love You,
Your Little Bro,

Alan

Anonymous said...

We'll keep all of you in our prayers, and pray that a new treatment becomes available in the next couple of weeks. Let's pray that Cody can be touched by the "Great Physician" and rid of this.
May the doctors be blessed with some healing wisdom.

Pray BIG and Keep the Faith!

MDCN

Anonymous said...

I do believe in miracles. I will be praying for one for Cody. I also believe in positive thoughts and I will be thinking them. Your family surrounds Cody with love. I believe that it is the most important ingredient in wellness.
Thinking of you daily. G2G

Mir said...

Cody is in my thoughts daily. This post just brought tears to my eyes. Don't ever lose hope!!

Anonymous said...

MIckey like everyone else we are in it for the long hard fight and we will not give up hope! Cody has been through so much that I can't believe that that little guy of yours has any quit in him. I remember a few years back when we thought we were going to lose that little man of yours and he kept on fighting and I just know he will now with our support. We are praying for you, Cody and your family!!!!!

Dan
ACCA

Cameron said...

You do not know me but I found your blog by accident and have been following for some time now. I continue to keep all of your family and Cody in my thoughts and prayers daily. I am so sorry for everything that sweet little boy has to endure, as well as, his parents and all who love him. I wish there was something I could do. Because I can't, I will hold on to hope and keep praying hard to God.

Trish said...

Sending love, support and prayers your way.

runnergeel said...

I will not loose hope. I will pray.
God bless you and your family
Karen

jeriberinanabana said...

Prayers are being said for Cody and for your family.

Gettin Older said...

We will continue to pray for help, for hope, for love, for life.

Anonymous said...

Mickey, it's so heartbreaking to read that you & Diane are even having to consider these options. No parent should have to be in the situation that you are in. We will continue to pray for Cody and your family. We will pray for a miracle.

BTW, does Cody take any medications to help calm him down like Respirdol? That medication is being used in lots of children and has been shown to have affects on the liver.

Teresa (tcoplen)

Anonymous said...

Mickey hang in there my friend. Cody is a fighter and so are you! The band that I ware around my wrist says "Faith, Courage, Strength, and Hope" I pray for all of these thing for Cody and your family.
God Bless,
Bruce

Anonymous said...

Mickey, we continue to have very high hopes that Cody will fight his way through this current battle - much like he has done in others in the past. He's still fighting and he hasn't given up hope - so don't you give up either Dad!!

Remember, "Nothing is worth more than this day!" - spend the time making lots of wonderful memories for both of you.

Tons of Hugs for Cody!!

Pat (ACCA-NCC)

TiredMamaRunning said...

Mickey, I hate to sound like a broken record but we're all praying in this house for those in your house every single day, and holding out hope for Cody. You and your wife are amazing parents in the way you handle this every single day, and do your best for your children.

Kati said...

Mickey, my heart aches for you and the family. My prayer is that each of you are given special moments with Cody to treasure each day.

Dottie O said...

Sending mental strength and some peace.



Dottie

Samantha said...

I have no adequate words...

Keep hugging and loving each other, celebrate the moment. I do believe in miracles.

Prayers, hugs, strength.

Sam

tww1980 said...

Praying for Cody.....and I will do my best to pray for him daily.

Monica Cassier said...

I am breathless with sorrow and disbelief. I will hit my knees tonight - truly hit my knees - and pray for Cody.

If I can do ANYTHING for your family, please let me know.

monica

Anonymous said...

Mickey,
I am keeping the faith and will continue to pray each day to the Lord for his blessing of Cody to beat this. Like others here, please know we do have the entire family in our thoughts and are pulling for the best.

Bill

Cameron said...

Hi Deck,
Thanks for stopping by our blog too. That was very sweet of you to leave a comment. You are an automatic friend too since you are a die-hard Steelers fan. I am sure you are getting ready for the game tonight. It should be a nailbitter. To answer some of your questions, we are originally from New Castle, PA but moved to VA in 1998...taught in Fredericksburg for two years, and then Arlington for 8 years while living in Herndon, VA and in 2007 we crossed over the Loudoun line to Martinsburg, WV so we could buy a home. I am sure you are aware of the prices for homes in VA. Cameron does have some medical problems and recently spent a month in the hospital in Pittsburgh. He goes to John Hopkins as well for treatment. We are still trying to get to the bottom of some of his problems. So, unfortunately, it was not well visits. But, nothing compares to what you are going through. Please know we say a prayer for all of you and Cody each night. I hope you are feeling all the love and prayers being sent your way. Enjoy the game with your family. ((((((HUGS)))))

Mary

Cap'n Ron said...

Mickey,
I am so sorry to hear that you are having to deal with such mental grief. I can not pretend to understand the pain that this monster has caused you and your family. What I can say is that my heart does hurt for all of you and that I will keep sending as much positive energy and love that I can muster your way. Take care of yourself and give everyone at home an extra hug tonight.

Hang in there buddy,,,,

Ron

Anonymous said...

Mickey, I am not sure what to say, expect that what hope you have hold on to. I know it isn't easy. We'll keep praying and hoping.

Susan and Jonathan