Tuesday, October 21, 2008

Be careful what you wish for.....

Well we found out today that Cody is not HAMA. And we found out in a big way. I have to think of a way to record this experience so that all of you can get a little understanding of what it is like. This is an absolute HELL!

This day started off at 6:45 a.m. I had to get Cody up so he could take his contrast for the CT scan he was to get at 8 a.m. This was a battle from the start. There is a fine line that must be walked when dealing with Cody. On one hand you have a little boy who wants the littlest bit of control of anything that is going on in his life. On the other hand we must get him to take meds, eat when we think he must, not eat or drink when it interferes with the meds and pre-meds. This by itself is very hard. He gets grumpy from not enough sleep. He gets grumpy from not being able to eat. Then we have the reaction to the drugs themselves. To say that this makes him act like Jekyll and Hyde is the understatement of the year. I can't even begin to quote the things in sequence that came out of his mouth today. On the Cody scale of '0 to 10', 0 being the best. I was the zero Dad in the whole world. Then 30 seconds later I am the 1,000,000,000th. The same goes for his nurse Kasey. She did the very best she could to walk the line of keeping him happy and doing her job. Sorry to say it just couldn't work. The absolute hardest part of this is telling yourself that he cannot control the things he is saying or doing. His body is hurting more than we can imagine so we give him pain meds that make him someone he is not. He says and does hateful things that he just can't control. Kasey says that all the kids have different reactions to these meds. Some fall asleep, some get very quiet and others get angry. Here are a few things that I can remember. When he didn't want Kasey or me to talk he would say, "turn the lights off, zip your lip, and don't make a sound." Meaning, shut your mouth. Believe me, he had no problem telling either of us to "shut up." If Kasey had to go to the room next door Cody would throw a fit. He told Kasey that he didn't love her anymore and he was taking all his kisses and hugs back. He told me that he wanted to go to a new family. This is not new but he said some other things that I just can't write here. I'm not talking about vulgarity but things that no 6 year old child should even think let alone say. I know he is exhausted. He has been crying, shouting or talking nonstop since 10 a.m. His eyes, lips and face are swollen. His voice is raspy and his nose is running. Myself, I have a splitting headache and I'm tired. I entered the day hoping and worrying that he was HAMA. By the end of the day I'm hoping that he didn't hurt much and that the meds will wear off soon.
This whole process is insane. As I type he is finally telling me how much he loves me and that he is sorry for the day... It's not like he had any say in his day....

Thanks for reading...


209Mike said...

I just can't even imagine any of this. I feel ashamed that I get upset at my little ones for the "normal" kid chaos. You are very strong despite what you feel these days. God bless you guys and keep the faith. Cody is my hero.

Kelly Bergfeld said...

Hey! Its nurse Kelly, i miss you all so much. I am so sorry to hear that Cody has been having a hard time. I wish i could help in some way. Tell everyone i say Hi. Stay Strong, you are some of the strongest people i know!! I think about you guys all the time and i wear Cody's bracelet and whenever someone asks me about it, i always tell them about Cody and neuroblastoma, so there are lots of people rooting for you all!!

Jenny said...


I'm so incredibly sorry that you guys are going through this. You are so tough and brave, and I'm so excited that you are on week 2 and get to come home soon.

We think about you all the time at Georgetown,

BIG MO said...

God bless you guys.All I can do is
shake my head and wonder WHY and
pray that it does wonders for him..
I hope you both get some well
deserved rest and tomorrow won't
be as bad.Hugs & kisses to you both

elizabethnyc said...

Gosh Mickey, so sorry to hear today was such a tough day for ALL of you. I wish we could all take a bit of Cody's pain away from him and onto our own shoulders to help ease the burden. I pray pray pray for those easy days when you all can have normal family time together.

Still praying for y'all,

Dottie O said...

It's hard enough to have the awful side effects, but not to know which ones you'll have and which ones you don't leave you totally unable to prepare for it.

Hoping this week ends on a higher note and that you all have a better week coming up.

Good news on the HAMA test.


Trish said...

Mickey - Cody knows how much you love him and that is why he feels so safe in being able to express his anger and frustration at you. He needs to vent and he knows you understand. I'm so sorry that you and Cody and all the other families have to deal with this. Special prayers for you all today.

Anonymous said...

I agree with Elizabeth,if we could all take some of the burden from you we would. Just know that we are holding you all up with our prayers and will never let you down in our support and love for you all. Hang on! I pray this week does ease up for you and that you all have a safe trip home.
Love, BigSis

Gettin Older said...

So sorry for the terrible day. You and yours are tough and you will be able to get through this.

God Bless and Prayers Continue.


Anonymous said...

Mickey, I can't image how tough that must be for you all. As Elizabeth said if we could take some of the pain away we would. Your sister hit it on the nose too about Cody using you as a sounding board. Remember that he definitely trusts and loves you.

On another note, it is great to hear that he isn't HAMA.

Susan and Jonathan

Anonymous said...

Reading your post broke my heart. I can't even imagine..
Thoughts and prayers your way for sure.

Be strong Deck.

Rocket63 from the RW Masters forum.

Anonymous said...

OH Deck. Prayers for calm peace to enter your life.
I am always thinking about you and your family and praying for them.

Anonymous said...

Mickey, this tore me! What Cody has to go through and the strain it puts on the family pains me to no end. The only thing that I know to do to help is to continue to pray for you all. Search for strength through prayer...you will receive it!
God Bless,