Wednesday, July 30, 2008

What a difference a day makes..

The chemo has really knocked Cody for a loop. His little body is now drained of energy and he just doesn't have that awesome smile and laugh right now. This stay has been much different in that Cody has seemed to change. I'm not sure if it is all because of a certain medication or that he is maturing. His anger issues have not showed once since we have been here. On the other hand he is much more emotional. He cried for hours after Diane and Justin left yesterday. Part of that may have been from his stomach discomfort. They had to give him meds last night to help with the pain. He was finally able to go to sleep around 1:30. He is such a trooper. His hair is starting to fall out again. I may bring in the clippers to cut it off. It gets all over his pillow and in his mouth and eyes.

Today we move... The hospital is renovating sections of this floor so we will move to another section today. We are lucky in that the room we have been in is a little larger than most and it is nice for the longer stay. We are not sure what type of room we will be getting later today.

Well, it's over!!!
As I mentioned a couple of weeks ago, AOL is making it's final flight from VA to NY tomorrow. Over the years they have been so good to patients and their families while helping us get to NY for treatments. Corporate Angel is currently looking for another company to fill that void. Diane and I will now turn to Angel Wings. They fly little personal planes up there. From what I understand they are not for everyone though. The ride is much different on such a small plane. If possible Cody and I will be using them next month when we go up for his scans and bone marrow. Diane will be taking him up a week or so later to begin his 3f8 treatments. My guess is that she will try something else. She doesn't even like to fly on the big planes.

Stem cell rescue Friday...
Cody will be getting a stem cell rescue Friday. The doctors and nurses are all ready to go. They have had his stem cells frozen ever since his transplant years ago. This will help his system recover quicker and get his bone marrow back to where it should be.

The next step...
The 3f8 treatment that he will be getting is the antibody treatment that I have referred to before on my blog. It is made of mouse antibodies that are created to attack the neuroblastoma cells. There is a humanized form of these antibodies that they are developing but they are not ready yet. 3f8 has many advantages over chemo. The patients don't lose their hair, they don't get sick for days and it doesn't beat their body down like chemo. But,,,, 3f8 is very painful. So painful in fact that there are not many meds that can control the pain. Other parents from our BOP say that you feel helpless during that treatment. You want to help your child get through it but you can only be there to comfort them. On the bright side, the pain only lasts for 30 minutes or so and when it is done the kid has the rest of the day to do what they want. On the other hand, the kids must do it for 5 days and it must be done once a month. Although 3f8 has it's own set of challenges it is by far a better option than chemo. Here is a link that Dottie provided that explains 3f8 much better.

It use to bother me to ask for donations. Asking for money is just hard for me. I am proud that way I guess. But, when it comes to this I ask that you give what you can. If you know someone that usually gives to a charity please suggest that they give to BOP. You can point them to the link on my page. Help is needed!!!!!

Please keep praying for Cody and my family. My other two young ones are showing signs of stress. Justin is having stomach issues and Daniela is starting to act out in ways that are common the stress that is placed on siblings. It's a long hard road...

15 comments:

Dottie O said...

Wow- a lot is going on right now.

Keeping all you in our prayers,


Dottie

Dottie O said...

I Googled and found this site- for my better understanding, if it's been posted before I apologize for the redundancy. It's very informative and now I understand more about why the new treatment has to hurt. :(

http://www.mskcc.org/mskcc/html/3215.cfm

I can't figure out how to make it a link, but it's worth a copy and paste.


Dottie

Anonymous said...

You have got my prayers always. for you and your whole family.
karen

BIG MO said...

Mickey, I'm old and wish I could
take Cody's place. Cody as well as all these other children should not
have to go thru all this in their
young lives. Between GOD and the doctors I pray they soon make this
awful CANCER go away forever.Please
give Cody & the other two a big hug and kiss for me.You and Diane
need a big hug & kiss also.
Later,
MOM

elizabethnyc said...

Gosh, Mickey, that is a lot to take in. Prayers for you and Diane as you both steer the ship - lots of treatments for Cody, some travel involved, and Justin and Daniela to consider in all this.

I wish there was more I could to, but prayers and positive thoughts are heading your way,
Elizabeth

Anonymous said...

It hurts me to read the updates especially when things are not as positive as we'd like for them to be. I, like others, wish more could be done. Please know that we're all praying for Cody and the entire family.
Shirley

Anonymous said...

Mickey please remember we are keeping you all in our prayers. It isn't fair that Cody will have to go through that much pain. But I am sure you already knew that.

Susan and Jonathan

Anonymous said...

I only hope that your hearts can
hear all the prayers that are going up for Cody and you all. All the words have been said and I can't add anything to them. Just know that you have an army standing with you.
Love,
BigSis

Gettin Older said...

Like Liz said that is a lot to take in, and I'm not in the middle of it. I t must be overwhelming from where you are sitting. You have lots of folks out here pulling and praying for you.

BTW, dropped a small something for Cody in the mail yesterday. You should get it tomorrow...

Deck Ape said...

Thanks Kirk....

Anonymous said...

Mickie, I feel for you! You know I contiune to pray for Cody and all of the family.

Stay Strong!

God Bless
Bruce

Anonymous said...

Just wanted to let y'all know that we are still thinking of you. Praying that the stem cell rescue goes well tomorrow.

Susan and Jonathan

runnergeel said...

Deck the gang would like to send Cody some cards again...and I do not remember your address. would it be Ok to give it to me and for me to give to those we "know"?

thanks
Karen

Anonymous said...

We are thinking of your family always, and are always included in our bed time prayers. Just now as I watched the video of Cody in the ocean, Alex jumped out of bed to watch also.

Your family's power of love with Cody's strength is inspiring. God Bless all of you and thank you for keeping us the readers and extended family informed.

Sending love along with a big family hug to all of you!!!

Shirley, Alan, Alex and Amy

Dottie O said...

Good Luck with the stem cell rescue today.


Dottie