Friday, November 30, 2007

Oh my goodness!!!!

Since Cody is possibly going home tomorrow, they are giving him platelets tonight. In preparation of the infusion they give Benadryl but he has shown that he is allergic to this. It was decided to wait until he was asleep and give him the Benadryl in a very small dose. Well this turned out to be a very bad idea. He started to stir then even before his eyes opened he screamed "I hate you daddy!" He then began thrashing, kicking, throwing everything he could get his hands on and just looked like he was trying to crawl out of his skin. The nurse had to give him Versed to finally settle him down. After the real Cody came back he hugged me and cried, then told me he had to pee. I think we will try to avoid Benadryl from now on...

Besides the obvious he had a great day. He ate a little for my wife and had been pretty happy. I hope he awakens in a better mood. :D

Thursday, November 29, 2007

A couple of pictures...

This is a picture that Daniela drew for Cody.

This is yesterday before morphine. He is feeling much better now.

We love our boy...

This right before I left to come home tonight. He is feeling better and it makes us feel better..

More good news..

I write this with guarded optimism. Dr. Shad just stopped by and gave the news I've been waiting for. She said that the MIBG confirmed that there are no signs of neuroblastoma in any other parts of his body. Also she said there is very little uptake in his liver. This is doctor lingo for his liver is responding very well to the chemo and it wasn't lighting up much at all. That means that the cancer is definitely being affected by the chemo. If it was lighting up that would mean that the cancer was still very active and living.


I'll write more later....

He slept great last night....

He seemed to be very comfortable and only got up to pee once after midnight. They will be taking him down for his MIBG scan in a few minutes. He is still sleeping so I hope wakes up in good spirits. If you click on the MIBG link above it gives a great description of neuroblastoma in general. Thank all of you for the prayers and well wishes they are working!

I'll write more later.

Wednesday, November 28, 2007

No chemo tonight!!!!

Since Cody did his last chemo of this session last night he should start feeling a little better soon. He is just so uncomfortable that it's hard for him to even talk. His mouth and throat are in really bad shape. The inside of his mouth is all red and inflamed.They decided that to give him a little morphine and hope that it would take the edge off. He will be losing his hair soon and when it starts falling out I will bring the clippers in and buzz the rest off. I've decided to cute my hair off again to show him that it is OK. It's a good thing I'm married because if I really would go bald I would be in trouble. ;)

It's 7pm and he is sleeping now. I hope he will sleep well tonight.

Thank you for all the kind words and prayers. Every word helps.....

I want to run... :(

It's been 10 days since Philly and my legs are ready to go... No time in the schedule for a run now. Maybe when little man gets home.

Well I don't have anything yet today. I'm sure my wife and Cody are sleeping. Last night was the last of the chemo for this session. If all goes well (no fever, diarrhea or any other bump in the road) he should be home by Saturday. The way this works now is his system will hit rock bottom. We wait for his numbers to return. This takes about 20 days, but for Cody it may take longer. Now keep in mind, during those 20 days he will have to go in for blood tests and such. If he happens to get a fever he will be back in the hospital for at least 5 days at a time. We will administer most of his drugs at home. This means an IV pump beside his bed and getting up every time the tube gets kinked. Other meds must be administered throughout the day and night. His site dressing must also be changed once a week. This the bandage that covers the entry point of his IV tube that goes in his chest. Most of the time he is not really happy about this because it is like removing a 5"x5" piece of tape from his chest that just happens to be very sore. We do this to prevent infection.

I will post more later. I'm get my other two children ready to head out the door for school. I'm heading into work which is a nice mental break.

Oh, have I ever mentioned that I work for the best company in the world?

Tuesday, November 27, 2007

I just spoke to the doctor...

Dr. Shad was just in checking Cody. She gave us some good news. Not only is Cody's liver enzymes falling but his LDH numbers are getting higher. When these numbers get higher during chemo it indicates the tumor is breaking down. Yay! With a little kicking and screaming she was also able to feel his tummy and check his liver. It shows that the tumor is shrinking. I'm guardedly optimistic at this point. This is definitely what we want to see.

Pretty good night sleep...

After his melt down yesterday afternoon Cody was very tired. He slept for most of the evening and then watched the Steelers with me. :D We went to sleep around midnight and he slept pretty good most of the night. He woke up on his own and told me that he had to pee about 5 times. He is such a trooper. His mouth is now getting sore so I don't know how long he will be wanting to eat. About 4am he got up to pee and I noticed he seemed very warm. The nurse checked him and he had a 101 temperature. With a little coaxing he took his Tylenol and is now closer to normal. He has one more chemo tonight for this cycle. Hopefully nothing happens and he can go home on Thursday of Friday. If he is permitted to go home I know it won't last long. Time really flies between treatments.

His liver enzymes continued to drop yesterday which is a good sign. It shows that the chemo is working in the tumor. We pray this continues...

Thank all of you for your continued prayers and concern. Diane and I feel like we have someone going through this with us. Many of you have written comments which I read everyday. Don't stop! Even if I don't reply please know that they mean the world to me..

God Bless...

I will write more later today...

Monday, November 26, 2007

What a difference a day makes....

I arrived at the hospital around 4:00pm. When I got off the elevator and headed toward his room I could hear him screaming long before I opened the door. Diane looked so tired which is just as I expected. Cody was up all night going pee every hour. He seemed to be a different person. The doctors couldn't touch him, we couldn't talk to him and it seemed like he was in such pain. Oh how I wish I could make him feel better. I'm his father, I'm suppose to protect him. I feel so helpless. I just don't want him to hurt anymore. I want someone to tell me that they can guarantee that he will get better if he goes through this. They can't do that. What am I to do?

The doctor ordered Versed for him and it took about 20 minutes for it to start working. He was screaming, kicking me, throwing everything off his bed. He started pulling his IV lines and that is when I had to restrain him from hurting himself. I kept telling him that I loved him and I didn't want him to hurt. I asked him if there was something hurting him and if I could help. I finally heard him say that he had to pee. After I lowered the bed he slid down and pulled his underwear down. I held the jug for him and he peed almost as much as an adult would. After he finished he didn't cry anymore. He crawled into bed and was my Cody again. This reminds me very much of the way he use to act when he would come out of anesthesia. I asked him if he was hungry and he said he wanted the candy cane that his sister brought him yesterday. I told him he could have it if he wanted but we had cheese tacos if he wanted them. He said yes and ate 2 whole tacos in about 15 minutes. I haven't seen him eat like that in a week. I hope he keeps it down. I'm now worried he ate too much too quickly.

He is now sleeping and it wouldn't surprise me if he slept all night.

We love you Cody... God Bless You!!!

Sunday, November 25, 2007

He is so special....

Even when going through chemo my little man can make you laugh...

They love their brother..

Cody scaring the other patients with his underwear and mechanical spider.. :D

Chemo started...

What a night last night was!!! This pour little guy did such a great job. He and I were up until midnight playing monopoly, chutes and ladders, big fish little fish and Hi Ho Cheerio... He was in great spirits, eating candy and drinking soda. I know what you all are thinking, but you have to understand that when your child hasn't eaten much for days and he finally wants to eat something you just let him eat.

They finally got the urine numbers where they wanted them. He went down for a CT scan of his head that didn't turn out very well from Thursday. We started the chemo at 12am. This is suppose to be the easiest on his body. They will get progressively stronger as they go on. He will have 4 treatments this week and then he should be able to go home for a while. His treatment last night was a drug called Topotecan. He will get this same drug all 4 days along with others. Last night will this was being administered he had to get up every hour to pee. He was such a trooper. He really didn't complain at all except when he didn't have to go. Cody will probably sleep most of the day which is understandable. Tonight will be the same, were he will have to pee every hour. The purpose of this is they don't want that drug staying in his body any longer than it is suppose to. Oh how we want to see this affect the tumor. It has to!
Thank you all for the kind words about my Aunt June. There is no doubt that she is heaven with my Uncle Clyde looking down on Cody...

Saturday, November 24, 2007

When it rains it pours....

I came home last evening with Justin and Daniela. It was nice to spend time with them. They are trying really hard to understand all of this. I drank two beers and watched a little animal planet. We went to bed around 10pm and I let the kids sleep with me. They really enjoy that. Around 12am I awaken by Justin throwing up. All he kept saying is "I'm sorry Dad, I'm sorry..." After getting everything into the washer I fixed the couch for him and gave him a bucket. He had a long night. Daniela slept through it all. He is not feeling well this morning. I've told him that he will not be going to the hospital with me today. He understands why.

I just got a call from my mother back in PA. She said that my dear Aunt June passed away last night. She was such a sweet and caring person. I'm so sorry that I won't be able to make the trip up for her funeral.

I haven't been able to get in touch with Diane this morning. I guess she and Cody are trying to catch up on their sleep. He ate some yogurt yesterday before I left. I worry about his eating. I know that he will be getting nutrition through his IV soon but that is not enough. He really needs to eat more. When the more potent chemo is started he won't want to eat at all.

Friday, November 23, 2007

I am home for my shift with the other two...

One of the very hard parts of all this is not to forget about Cody's siblings. It is so very easy to forget about them in the hustle and daily trauma that hospital life brings. We are trying very hard to keep them well informed. Diane brought them to the hospital today. They arrived about the time Cody got out of surgery. He was so happy to see them and they him. They worry so much about Cody. I may try to take them to a movie tomorrow.. :D

Well here is the latest. It has been confirmed that the cancer is back in his liver. That is really no surprise at this point. The preliminary results of the bone marrow test is negative. Diane signed papers this evening for permission to start chemo in the morning. The chemo will run off and on until the 27th. Then he will stay at least 24 more hours. After that, he will come home and we will watch his blood counts. After a couple of chemo treatments we hope there is an effect on the cancer. If so we will be making trips between New York and Georgetown. This is the beginning of a very long journey that I am more than willing to make. I just hope it is easier on Cody this time.

While praying for Cody please mention my wife also. She has a very hard time with this and she needs the strength.
I also want to mention my Aunt June. She is in failing health and may not make it much longer. She has always loved me even when I wasn't so lovable.. :D

Bless you all...

Well we are here....

We checked into Georgetown yesterday afternoon. A day early because of the bad night he had the night before. He's not eating and drinking very little. I think his liver is putting pressure on his stomach and it doesn't feel good when he eats. He did sleep pretty good last night. I have forgotten how hard it is to sleep in this hospital.. :(

He has a very busy morning planned today. At 8am he is having a liver biopsy then they are going to do his bone marrow test. Hopefully from there they are going to put his PIC line in. This is the tube that goes into his chest and is used to administer all the chemo and meds. It sounds bad but it really makes things easier on him in the long run. He would need to have needles sticking him every time without it. They are also planning to do his nuclear bone scan today also. This will show how far the cancer has progressed. That is, if it is cancer. Please continue to pray for Cody...

I'll write more later..


I'm now waiting in his room. He is having the Central Line put in his chest. It's been a long day for him. He has been such a trooper. Despite the fact that he hasn't eaten much of anything for a couple of days he has done pretty well.
This morning he had his liver biopsy, bone marrow taken and also a Nuclear Bone scan done. He did so great. We already received news that the bone scan test is negative. That is a good thing.. While typing this I just received a call from the doctor putting in his Central Line. He said everything went well and he was able to use the same scared area that his line was in before. That is another bit of good news. Right now we will take anything we can get. :D I really don't feel very good about the liver biopsy coming back negative. He doctor, Dr. Shad has already spoken to the folks at Sloan-Kettering. The have a plan and will start treatment tomorrow. This is good because the more time that goes bye the more the cancer has a chance to spread.

Thanks to all our friends and family for you support and prayers. They mean the world to us...

Thursday, November 22, 2007

How could I have known?

When I got out of bed this morning I had so much on my mind, most of it work related. Deadlines, commitments and obligations all things that I have really been thriving on to tell you the truth. Now that all seems so trivial.

Cody has been feeling a little out of sorts lately with what we thought was a stomach virus. It turns out that it is much, much worse than that. We rushed him to Georgetown today because his pediatrician discovered Cody's liver was very large. Knowing Cody's past he didn't want to speculate on what my be going on. He called Cody's oncology doctor and she said bring him right in. After examining him, his doctor sent us down for CT scans. When she got the results our lives changed forever, again.

We won't know for sure until Friday but it appears that Cody's cancer has returned. We don't really know how or why but it appears that some bad cells remained hidden when Cody had his stem cell transplant. He is scheduled to have a biopsy done on Friday morning. We will know exactly what his is dealing with then. He is already in allot of pain. My wife and I wonder if he is going to be able to make it until they can start treatment. This tumor appears to be growing very quickly and the doctor says it is situated right near a major artery. I will write more later...

As I was writing this morning Cody and Mom came out and sat on the couch. Cody is very uncomfortable and even more so when laying down. Just moments after taking a drink of water he lost everything that he had in his stomach. I don't know if we will make it through the day. He didn't eat well yesterday and if he can't keep things down then they will be putting him on an IV.

Just for the sake of venting I'd like to tell you a little about how our day went yesterday.
After our arrival at Georgetown and the doctor examined his belly she said that his liver felt large but smooth. That meaning she thought that it was just swollen from infection possibly. I continued to hold on to the chance that there was something else that could be wrong with him. Diane and I are wired much differently. She has been worrying about this happening since the last chemo treatment. I on the other hand believed that if I didn't let myself think the worse, it wouldn't happen. When the doctor returned from reading Cody's CT scans she called us into her office. When she told us what they had discovered it was like someone had punched me in the stomach. It was like the worst nightmare imaginable. How could this happen again? He had the most aggressive treatment and a stem cell transplant the last time he went through this. His treatment was so hard on him the last time we nearly lost him because of bleeding in his lungs as a result of one of the chemo drugs. No child should ever have to go through this. To go through it once is not fair, but to go through it a second time is unspeakable. How do I explain this to him? I'm suppose to protect him from bad things. How do I explain it my other children? They will automatically think it was something they did, a fight or argument with Cody over something silly.
After the doctor told me I cried. Diane cried again and again. When the doctor started talking about the plan of attack it became oh so real. The biopsy tomorrow will help determine if it is the same cancer that he had before. The rapid growth of this thing says it is the same. They will do a nuclear bone scan after that to determine if it has spread. Oh God I pray it hasn't. They will also install a broviac (spelling) in his chest again. This is used to administer drugs so they don't have to keep sticking him with a needle. When I bathed him last night I couldn't help but cry when I saw the little scars from his last broviac and where they removed his tumors. Although he seems very healthy on the outside, he has never gained a tremendous amount of weight. Maybe they will start chemo this weekend. The fact that he is becoming more and more uncomfortable I kinda hope they will but I think it will be on Monday. The doctor also mentioned they will be need go up to Sloane-Kettering in New York. They are on the cutting edge of cancer treatment and it was their protocol that Cody followed the last time.

One possible plan is that they may use Monoclonal Antibodies. This a treatment that Cody was selected for before but we decided that he was too weak from his previous treatment and couldn't handle that. Now it may be the only option. They have had good results so far but nothing is guaranteed.

We just want to get through today. We want to have one more day of semi normal life before he has to go through this hell again. More later.....

Tuesday, November 20, 2007

My not so big day.....

Well I’m not sure how I want to start this. The day of the race I wasn’t quite sure if I was going to write any post race report at all. My mind just wasn’t working that way at the time. Looking at it now I think I really set myself up for this. I got caught up in the whole BQ thing. At this point I don’t know when I’m going to sign up for my next marathon. It’s just that I’ve been training for the better part of 2007 for one marathon or another. I think that one of the biggest things that I was looking forward to is not training for speed. I just want to enjoy running again. I’m sure you have all been there.

The day before…

I left my home around 6am on Saturday morning and I made great time getting to Philly. I arrived a little before 10am and found the hotel with no problems. In fact the hotel clerk let me check in very early which was awesome. I headed back out to my car to get my things and as I walk towards my car I heard someone say, “Mickey?” I turned around and took a guess that this pretty little lady that I had just passed was G2G. In fact, it was, and after the hugs and greetings we talked for about 2 minutes then a man and 2 young girls walked up and said “this must be Deck.” It turned out to be Hunt and his daughters. How funny is that? I’m in Philly for all of 20 minutes and I meet 2 different people that know me… :D

So G2G and I decide to head to the Expo to pick-up my packet and she wanted to pick up a shirt that passed on Friday. We were lucky to get into the Expo center when it first opened, so we got right in. After spending an hour picking up my packet and buying my lime green runners shorts we headed out. On the way out we happen to see Karen, her husband David, Ray, and Sugar. After a few hugs and hand shakes we were off. We got back to the hotel and I decided to try on my shorts and make sure they matched my shirt.. :D I know, I know, most runners don’t care if their outfit matches but I do.. :D G2G and I agreed to meet for lunch a little later in the day.

Later that day G2G and I had lunch and took in a little of the park around the Art Museum for pictures. I headed back to relax and she wanted to take the downtown tour. We decided to have diner at an Italian restaurant which I made reservations for. :D It wasn’t until Ray and Sugar arrived that we found out I made the reservations for a different restaurant. They ended up finding room for us so all was not lost. It was nice to have a chance meet RunWest, HuntRunner and his family, Rooster and his family and of coarse Ray and Sugar.. It was a very nice time. I just wish we didn’t have a race the next day because I would’ve loved to drink a few beers.. After dinner we broke things up pretty quick and headed back the hotel. I didn’t last much past 9pm before I passed out.

Race day!!!

I really can’t say too much more than I already have about my race. I positioned myself close to the 3:30 pace group and really did feel like this was my kinda race day. It was cool but not real cold. It was over cast but not raining. What more do you want? Just as the race kicked off it started to rain a little but not too bad. For the first couple of miles the pace group had a real hard time keeping a 8:15 pace. Once again this was a race that despite the “No Ipod Rule” many people were wearing them and they seem to be in their own little world. Most of them were drifting from side to side and not paying much attention to others around them. After jockeying around to just keep up with the pace group things started to open up a little. I felt really good up to the half way point. I just feel that if I would’ve ran closer to 8:00 than 7:45 it would’ve made a world of difference. I passed too many water stops because I was worried about falling too far behind the pace group. Big mistake!!!!! This is just another case of me knowing what is right but doing something wrong. Once I made it to mile 18 I knew I was going to have problems. Mile 20 turned out to be the magic mile. As soon as I hit the turn around at Mile 20 it was a major struggle from there to the end of the race. My legs started to cramp worse than I have ever experienced. I had to stop, stretch and walk many times. I did see Rooster somewhere around mile 21. He was heading in the other direction and called my name. I could hardly focus enough to reply back to him. It was getting bad.. I worked too hard for this to happen. I was very upset for letting myself fall into this trap. From Mile 22 to the end it was just plain ugly. I couldn’t even look people in the eye who were cheering along the route. I was ashamed! Can any of you relate to this? Even if I couldn’t have made 3:30 I think 3:35 to 3:40 was a real possibility. It was just stupid running on my part. This is the last time I run with a pace group! Well I get to Mile 25 and make my mind up that nobody from here on out is going to see me walk. I forced myself shuffle the rest of the way to the finish line. As I approached the finish line I could hear Sugar cheering for me and I couldn’t even muster enough energy to look around and smile. I’ve had much better races in my day but I hope I don’t have any that are worse than this… Thanks for reading and sorry for such a long report. I feel better already…. :D

Saturday, November 17, 2007

Well, this is it!!!!

I'm packed and heading out the door. With all my work stuff going on I really haven't had a chance to fall into a taper madness so far. I have been losing sleep this past week but I don't think it's race related. :( I just have so much stuff going on at work and the kids keep us very busy also. I found out that I'm heading to Australia in January for work. :D I heard worse news!!! ;D So, I'll be posting what is hopefully a good race report next week and I hope to have plenty of great pictures of all my RW friends... Check back to find out how this old man did in Philly... :D


Saturday, November 10, 2007

7 days and a wakeup!!!!

It's all down hill from here. I have an 8 scheduled for tomorrow and then all low mileage for the rest of the week. I've been so busy with family and work that taper madness hasn't set in yet. I'm sure I'll be getting a case of the nerves this week.
It's been nice not having to get up and run in the dark. With daylight savings and the lower mileage runs I've been starting at 6 a.m. instead of 5. I like this cooler weather also. It makes breathing so much easier.
I'm looking forward to going to Philly not only to run but to meet all my friends from RW. We are going to have quite a group. Unfortunately I won't be able to spend much time there after the race. I've been traveling a lot for my work and I don't have the heart to stay away the wife and kids anymore than I have to.

Philly Baby!!!!!

Tuesday, November 6, 2007

Back from Jacksonville..

Well I got back from Jacksonville today. Cody has a fever so I will be staying home at least until noon when Diane's father comes over to relieve me. I had a fabulous time meeting BigMan while I was down there. We went to Hooters to watch the first half of the Steelers game. Mike is a very nice guy and he just reinforces my belief that runners are some of the best people you can meet.

Here are a couple of pictures of Big Man and me.

Thursday, November 1, 2007

Last big one...

Well I got my 16 miler in this morning. The temperature was perfect. Nice and cool but not too cold. My legs feel pretty good and I have no real aches or pains. I'll be doing a couple of 10 milers while I'm on the road. It's just over two weeks to go now... I can't wait... :D