Hanging in there...

2/25/09- WEDNESDAY
I had a very hectic morning and things were not going very well when I was trying to get to Cody... But, I made it around 7:30 am. Earlier, they had drawn lab, he was still low on potassium so he had one "shot" of it and 3 IV bags throughout the night. Cody still not neutropenic yet.
Around 8:00 am, the APN from the clinic was doing rounds and we expressed our many frustrations to her. She was and is a very nice woman and she was very understanding. She told us they had to order out for Cody's chemo (Daunorubicin) and the plan was to start chemo that evening and wait on the ATRA pills- they had changed their minds about the treatment plan. Cody was still feeling really good at this point and not wanting to be there... We still felt like we were there for an extra 24 hours when we shouldn't have been... Cody wanted to go down to the cafeteria to which they were hesitant to let him leave the room thinking he'd make an escape. They said we could be gone for about 45 minutes because that's the battery life on the machine. So, he was told to put on his mask, which lasted until the elevator, and we went and got some breakfast.
There were just familiar faces everywhere! We ran into one of his physical therapists that had helped him learn to walk all over again and we had a very nice visit with him. He had never realized the impact he had on Cody's life and I was glad we were able to share that with him. It took Jamie a few minutes to remember who we were, but then the name came to him and everything. He remembered Cody being very weak and him having to be right there in case Cody went to fall and he remembers how unsteady Cody was. Cody reminded him of the time that he was going to go down to the lobby and he had made it to the elevator without the cane and Jamie came running towards him with the cane telling him that he couldn't be taking off without it. As Jamie said, mainly for balance.
At 9:25 am, we were just hanging out up in the room. I convinced Cody to play hangman with me. My message to him: "I love you more than words!" His message to me: "Forever and ever baby"
At 10:00 am, his oncologists nurse called and we had a good talk. I guess the APN had told his oncologist that Cody seemed "tiffed" and so they wanted to check up on us. I told her of our horrible experience so far and she had been aware of our first horrible experience last time and hated that we were going through this again. She told me that really we weren't there for nothing, that it was important to get Cody hydrated, etc before the chemo started.
At 10:25 am, he got his allopurinol and another potassium "shot" and the nurse said they'd check it again in a couple of hours.
Cody had been refusing all food trays. At 11:00-11:30, we met a very nice man named Bob. He was a volunteer and he came to take a food preference survey. He was very kind and shared with us some of the war days and his life. He appeared to be another of our guardian angels even though he thought we may have been his that day. He gave us his card and on the back: "Be not forgetful to entertain strangers for thereby some have entertained angels unaware." Hebrews 13:2 Bob was very sorry to hear of our story from September, but told us that if God gave us a miracle once, that He can do it again. At that moment, I thought of what a good friend shared with me that had been told to him long ago- You do what you can and God will do what you can't.
At noon, vitals. BP- 137/81
At 12:40 pm, Cody had been dozed off for about 15 min and the nurse entered with a piece of paper and then she said she would just come back. Then, in a minute, she came back and said, no I can't. I have to draw from his PICC line to check his potassium again. Cody had to sign the form authorizing the chemo. He was complaining of his stomach cramping. She went to get him a hydrocodone and I was hoping he would be able to rest.
At 1:00 pm, the oncologist who had, as I said then, drew the short straw that day and had to tell us the diagnosis, was doing rounds. He said he had hoped to never see us in the hospital again. He seemed optimistic about this time, being caught so much earlier than last. He told us the chemo would start at 5:00 pm. He asked how I was. He assured me that Cody was so much stronger this time and his lab was starting out so much better to work with. I told him this time was so much harder for Cody because he doesn't remember last time, so it's like the first for him in a way. He told Cody that he was just so sick and so medicated and that he would usually step in the room to wave at Cody and then be off to the side talking to the family (us) about him living or dying. He said that Cody hung in the balance for quite a while.... (You know they never came out and said to me that Cody might/could/would die, but I knew they were saying it in every other way possible) Something that only came out of one other of the specialists mouths, this oncologist before he left said, "God clearly wasn't through with you yet or you wouldn't still be here."
At 2:30 pm, the lab guy came to stick Cody because since Cody was receiving potassium through his PICC line, it had thrown the results off possibly and they needed to double check.
5 minutes later, Cody broke out in that red splotchy stuff that no one even last time was ever able to tell me what that was, so I wanted the nurse to look at it and see what she thought. She'd never seen anything like it before. We visited with her for a bit. His WBC low and platelets down to 40,000 from 85,000 Monday. (2 days later)
At 2:45 pm, I took a picture of the rash- (the part on his arm anyway)

At 3:25 pm, Cody finally got hungry, so I went and got us some food. While I was gone, his potassium results came back good. They had put up another bag.
At 4:00 pm, we both were having some anxiety about the chemo starting in an hour... Prayed for no kinds of reactions like before...
4:25 pm
Dear Heavenly Father,
I come to You in prayer asking for You to watch over Cody and for You to guide and direct the doctors and nurses taking care of him. You are the Great Physician and we are relying on You most of all for Cody's health- as this is all in Your hands. You are in control. I have great comfort and peace knowing that You are with us and that with You, all things are possible. I pray for the medical staff to stay on top of this situation and for Cody to tolerate the treatments well- physically, emotionally and mentally. God, we need You and thank You for loving us so much and thank You for Cody's miracle. Give us the strength we need to get through this.
In Jesus' Name. Amen.
At 4:35 pm, vitals. BP- 138/86 Temp: 99
Just waiting to start the chemo... watching the clock...
At 4:40 pm, The nurse gave Cody Ativan and Zofran.
At 4:50 pm, Hooked him up to the heart monitor. Warned us that his urine would turn red after the chemo, not to be alarmed by it.
Then, at 5:00 pm, Cody had asked me to go and push the door shut and when I walked over there, in the hall, there was one of our guardian angels. She was headed to the restroom and I told Cody she was there and he told me to wait on her... I said, watch, I bet she's coming here anyway. Sure enough, she was. She did the chemo study because of us. She said, I became chemo certified because of the 2 of you! She told Cody how good he looked and that he had all of his hair back and that I looked really good. Cody and her joked back and forth quite a bit. She told Cody that down in CCU they learned that when they gave him any kind of pain meds, that he would get really hyper and talk- talk- talk- talk- talk then crash. Cody asked about a couple of the others who had taken care of him in CCU, if they were still there and they are. Melody, one of our guardian angels, someone we will never forget and apparently she'll never forget us. She gave us hugs before she left the room.
Chemo started at 5:45 pm. and IV fluids.
At 6:10 pm, Cody said, it's really warm in here! Some little red dots popped up on his arm, so we had the nurse check him out, but everything was ok. Temp- 99.1
Chemo done at 6:45 pm.
At 7:10 pm, he had more lab drawn. Cody almost refused because all of his veins are shot. The guy finally found 1 he thought he could use and he was able to get what he needed. Last time, the whole point of the PICC line was to be able to draw from it, but he said they weren't allowed to this time? (Probably due to throwing potassium results off) He said Cody could deny the lab, but they wouldn't be able to give him more potassium if he did. Well, what do you do if you don't have any veins left to use?
At 7:30 pm, he had a few moments of confusion.
At 8:00 pm, we met the night nurse and she said that she would come back for an assessment.
At 8:40 pm, Cody said that his legs felt cold, he was chilling and his body was aching all over and he was very emotional!
At 8:50 pm, the CNA went to go figure something out.
At 9:10 pm, the nurse came in and checked him out. Jotted down his symptoms. Temp- 98.8 Oxygen- 90% BP- 161/95
At 9:45 pm, Cody told me to hurry and get the trash can. He vomited, very, very badly. The day before after the nurse and aide realized we were even there, we were told by the aide he would go get the "welcome basket" (or whatever they refer to is as)- Tub, lotion, kleenex, etc. I didn't even have a washcloth in the room to wash Cody's face off and I had hit the nurse button as soon as he got sick and the aide came because the nurse was on the phone with the oncologist trying to figure out about Cody and she brought in a stack of washcloths and said, here are you some more washcloths and I said, no, we never even had any washcloths until now. Then, she came back with our "welcome basket". I was so upset. It took me a little bit to calm down because I thought I was going to be telling somebody about it, but decided to tell the oncologists nurse the next day. My main focus had to remain on Cody. And, when they said red urine, they meant, completely red! But, Cody lost it and begged me to just take him home... he just wanted to go home... And, after the way we had been treated and felt... I was thinking about doing just that...
At 10:15 pm, the nurse gave Cody phenegran and hydrocodone. His potassium was good- 3.8. She also brought in extra blankets and pillows. She told him if he needed it, in about an hour she could give him a xanax.
At 11:20 pm, BP 142/93. Cody started raising his head up, saying something off the wall, and then laying his head back down, the raising it up, saying something, laying back down.... I watched him do this for a long time. They said it was just the medication. It's not like that makes it easier to watch....
2/26/09- THURSDAY
4:50 am- BP- 133/88 (maybe, I was soooo tired) Temp- 98.5
6:30 am- Cody took his nexium and levothroxine.
7:00 am- BP- 136/85
8:00 am- Lab... barely found a usable vein.
8:15 am- APN from clinic doing rounds. Immediately knew something was wrong. We started telling her of all that had happened so far and she went to go figure something out for us. Cody was still ready to walk out of that place and he asked her to please just get him out of there. When she means business, she means business!
At 8:30 am, one of the directors of the hospital came to hear our complaints. She was very nice and we appreciated her listening to us. I told her that we are not the kind of people to cause any problems at all or make a big deal, but that things had not got off on the right foot at all the first day and that Cody was ready to go home and that it wasn't anything personal against any particular person, but it had all just been so ridiculous and some of it, in my opinion, very unprofessional! They did decide on moving Cody to a larger room and try to be more accommodating if he was going to be staying a few more days...
At 8:45 am, tada! Cody's oncologist walked through the door. We were surprised to see him, as he made a special trip, just for Cody. Cody's platelets were at 30,000... not nearly as bad as I thought they might be after another day had passed by, so we continued to ask if there was ANY way we could just go home and do the treatments at the clinic. (the other oncologist and APN got our hopes up... she was really looking into getting us out of there....) We were (barely) convinced to stay. The risks right now are 1. bleeding 2. the leukemia infiltrating into the organs like happened last time Something was mentioned though about the treatment plan changing, because some of it may not be necessary right now. I don't know it that means the ATRA could wait a while longer or what? We had a lot on our minds, but the oncologist and Cody love to joke and they both were laughing and easing the tension in the room and causing me to laugh, too. The oncologist, thank God, put in orders to draw from the PICC line and stop the potassium and just check it once a day and if it's low, Cody can probably just take it in pill form. So, after some issues getting resolved and at least being heard, we decided to hang in there...
At 9:20 am, we went down to the cafeteria. Cody actually was hungry, which I was glad to hear and he did eat breakfast (and held it down, too)
At 10:10 am, we were back in his room. He was very tired. It was amazing how he completely changed in such a short amount of time after the chemo the night before. Like an hour to an hour and a half later, besides him feeling horrible, he looked it and this had been all so hard because it was definitely bringing back memories... The nurse Cody got today was very nice and very good at what she does. She brought a print out to us of Cody's lab results and info on his meds.
At 10:20 am, allopurinol.
At 11:15 am, Vitamin K, antifungal and lab from PICC.
At 11:25, more phenegran and hydrocodone.
At 11:40 am, All settled into the new room and mucho better : )
At 12:10 pm, Vitals BP- 148/90
I had to leave to go home and take care of our little ones. Cody was ok whenever I left. Very tired. I was praying for him to get some rest and try to pass the time that way, until my dad could get there to spend the night with him. I told him I would call him and that I did. I woke him up twice and felt bad for that. But, it was so good to hear his voice and to get to tell him that I love him! I'll be going there tomorrow morning and being there all day, spending the night... and then being there Saturday. The oncologist said he will be back by tomorrow morning and Saturday morning and I said, then you'll be discharging him, right? I can't get anyone to commit anything to us... I won't hold them to it... It'd just be nice to have some kind of idea. Before going into the hospital, the hopes were 4-5 days. Ever since we've been in the hospital, no more time frame has been said from anyone. I am praying that Cody can come home this weekend or for sure Monday. I know there is no way to know at this point yet...
My dad said that chemo got done tonight about 6:30 pm. I last talked to my dad at 10:00 pm and Cody had never gotten sick and was doing ok. He was just really tired and sleeping. I pray for tonight to go well and I can't wait to be with him again in the morning.
Whenever I got home, I gave Zane a big hug and kiss from me, then a big hug and kiss from daddy. He was like, daddy! And pointed towards the door. I said, yes, daddy went bye bye for a while, but he'll be coming back home soon. Then, I picked up Kadee and gave her a big hug and kiss from me and then from daddy, too and she just smiled so big! Later tonight I was looking at the pictures I took from yesterday and as Aaron talks about Chaneille thinking that Cole lives in the computer or is in the computer... Zane got so excited to see Cody and pointed Daddy! Daddy! I said, yes, that's daddy. Hi daddy! And, Zane smiled and waved at the picture. I let him look at it for a while and he would look at me, then back at daddy! I thought he was done and went to look at something else and he didn't like that too well, so I went back to the picture of daddy and we "talked" to him some more. It was actually one of the sweetest things, yet made tears run down my face because I know that Zane is older now than last time and I don't know what/if he remembers last time, but this time is just totally different. Gosh, he's so smart! Little Kadee bug played and laughed and played and laughed and how could my spirits not be good in the presence of our children! As much as I am missing Cody... I know my dad is there... I know above all, that God is and that we are going to be ok.


I came up with the following earlier today: 2/26/09 10:35 am

It took everything in us
To come back to this place.
We don't even have to say it
It reads across the face.

The very core of our beings,
Tested and tired.
Facing all of this...
Yet, we are admired.

For trusting in the Lord,
For our faith and hope.
Feeling God's constant presence,
Helping us to cope.

He is the Great Physician.
He gave us a miracle before.
To Him be the glory,
For whatever is in store.

To Cody, my love
Hang in there, be strong.
Hopefully in just a few days,
You'll be back where you belong.

At home, with us
Your family.
For, I know there's no place
You'd rather be.

You will be soon! We love you!

Thank you for keeping up with our lives and for raising us up to the Lord in prayer.