Monday, December 31, 2007
Cody had a very good day today. After I wrote last night's blog entry I hit the sack while Cody was sleeping. He woke up last night at midnight and started making grunting sounds. I know Cody well enough that he needed to go pee but was well aware that he went to bed on bad terms so he didn't use his words. I say " bad terms" but you know what I mean. I lifted him up and let him stand in his bed while I held his bed pan and he relieved himself. He started to cry as did I. I told him that I love him and I wasn't angry with him. I told him that I just didn't want him to hurt himself. We just held each other for a minute and then he said that I made popcorn and he wanted some.. :D How awesome is that? That is why kids are so resilient. They live for the moment. I knew that he was not going to sleep all night so I filled a plate of popcorn up and had it ready. I gave him the popcorn and we watched Animal Planet until 1:30 am. I told him that we needed to go to bed so we could wakeup and have a good day. I told him that we needed to eat and be happy. Oh how I love him............. He didn't question me at all. He rolled over and closed his eyes and went to sleep. We slept until about 8 this morning.
As I said before, we had a great day. He nibbled on candy and munchies all day. At 1pm I asked if we could have him unhooked from his IV for a while so we could get out of his room. He had to start a new med at 5pm that was going to go for 12 hours. So we got unhooked and I loaded him in a wagon. We headed up to the Georgetown Soccer field. I ran around the field a few times and we went down to a little man made fish pond. He loves to look at the fish. We have been doing it for years. Anyway, Diane and the kids got to the room about 6pm and we spent a couple of hours together in his room. The kids took turns laying in bed with Cody and we had a pretty good time. We said our goodbyes at 8pm and headed home.
All the way home the kids were asking life related questions. I have come to the realization that Justin and Daniela are very much aware of what is on the line here. Justin even said as we pulled up to the house that if Cody died he would cry for 2 days. I just told him that we didn't want to talk about that. They are both trying so hard to do the right thing. When Cody is angry at them for no reason they are starting to understand that it is not really Cody. This is a living hell. I have gone through years of my life where I didn't cry once. Now it seems like I'm crying daily. There are times when I think that there is something I have done in my life that has brought this on my son. I was such a rotten kid. Karma is a bitch, isn't that what they say? God, if you are listening to me right now, please take care of my son... I feel so helpless right now...
Sunday, December 30, 2007
Cody's doctor finally got back yesterday. She is from Palestine and travels back there once a year. Unfortunately for us she left just 2 days after Cody was re diagnosed. Her name is Dr. Abu-Ghosh and she is an angel. They have a great group of doctors which you can read about here. Dr. Shad is the lead doctor of the group and she is one of the best ever. We feel truly blessed to have found this group.
I'll write more this evening when I get in.
Well I'm here and hanging out with Cody. I don't know how to start this. This is one of those times where I feel like I'm hitting rock bottom. I'm not sure if Diane is feeling much better. Cody is sleeping now after a knock down, drag out, melt down. I'm becoming increasingly concerned about Cody's mental state. He has had two very bad nights of no sleep or very little sleep. I'm not talking about him being grumpy, moody or even angry. I'm talking all out rage... I'm deeply concerned that he is going to hurt himself. These are sessions that we would see after he would wake up from sedation. Now it's so bad that if you say something that he doesn't like or if he has to repeat himself he has a total meltdown. I had to physically straddle his legs and hold his arms and hands so he wouldn't hurt himself. I really want to talk to his doctor tomorrow and voice my concerns. Another sad point to this whole thing is that Justin and Daniela had to see all of this. They must be so confused by all of this. I know that I am.
Cody has lost control of everything in his life. He is forced out of school, his home and his bed. He has to stay in a hospital room hooked up to an IV 24 hours a day. He is forced to take oral meds at all hours of the day and night. On top of all of that his feels like shit. He has parents that are forcing him to do things that he doesn't want to do. He doesn't understand that they are doing this for his own good. This is one of those times when writing in this blog helps me more than I could ever say.
Saturday, December 29, 2007
Cody's fever that brought him here is still hanging on. Each time he comes in with a fever they run him through a full gamete of antibiotics until one works. Right now as long as the fever is not too high and he sleeps or is not uncomfortable they don't give Tylenol. They want the fever to fight whatever it is as much as possible. So actually with the fever Cody still sleeps pretty comfortable despite being awaken every 4 hours for vitals and getting up to pee 3 times. He also has diarrhea which got him up 2 times. He doesn't complain though. I think it all catches up with him during the daylight hours. It's 9:30 am and he is still sleeping. I have no plans on waking him before he wants to get up on his own.
Once again I would like to thank all of you loyal readers. We know that there are so many people out there pulling and praying for our little boy. It truly warms our hearts. Diane enjoys seeing the posts from you regulars especially. Kirk, Liz, Moon, G2G, Dottie, Susan, Gregory, Kati, my brother Shawn and MySol. If I have left your name out please forgive me. I know that there are many of you out there that read regularly but choose not to post and that is OK. Thanks to all the my wonderful co-workers and their families who have been helping with food and the studies of Justin and Daniela. This battle would be twice as hard without you all. Thanks to Justin's scout troop who took the time to come out before Christmas and hang lights. We love them and I don't think I would have had the time to put them up this year. Thanks to Karen, Mary Jane, Chris, Matt, Chuck, John and Gene for helping us again. You guys are the greatest. I know at times I'm not the best in-law and I don't always act like I appreciate what you do but "I DO." With my family living so far away it makes it hard for them. I know they would like to be here but the miles don't permit it. My family and I are truly blessed to have all of you in our lives..
Thursday, December 27, 2007
They had our room ready for us when we arrived. We know almost all the staff here on C53. The nurses and doctors know Cody very well. He is such a tough character that they all try very hard to get on his good side. But, even when on that "good side" you have to respect when he doesn't want to be bothered. He makes it very clear when he is not in the mood to be messed with.
To top it all off, Daniela has been complaining that her throat was hurting for that last couple days. She hasn't had a fever but we have been very careful to keep her away from Cody. Before Diane got home yesterday I called and made an appointment for her at our pediatrician. The appointment was for 8 am because I thought that it would be me taking her and I wanted to be home quickly so Diane could go to work. Now she has to take her and I haven't heard from her yet.
Well, as I said in the title, "we did enjoyed it while it lasted." We got almost 7 days at home after the last chemo which is quite remarkable. Hopefully his high temp goes away and we can get home soon. We know a trip to New York is in our future very soon. Unfortunately it's not for pleasure.
Tuesday, December 25, 2007
Yesterday it was Diane's turn to take Cody in for blood work. I thought I'd do her a favor and take him in. We thought for sure that he would need platelets or whole blood but he didn't. His platelets were 44 thousand so the Dr. told me to go home. One thing for sure, his numbers will be @ 0 by tomorrow. We should put a sign at the door for the next few days saying "no visitors please." He is neutropenic so we have to be very careful not to expose him to anything.
After this week things should be on the fast track. We are suppose to head to SKM in New York as soon as he starts to recover. A friend of the family forwarded us a link from Corporate Angel Network. They give free flights on corporate jets for cancer patients and their families. Click the link, there is a nice news report on them and what they do. Diane doesn't like to fly but I think she will warm up to this since we can fly out of Manassas.
I'm happy to report that the days have been uneventful which is just how we want it. :D
Sunday, December 23, 2007
Saturday, December 22, 2007
Today he has to go in for blood work. Diane is taking him into
I've decided to post a fact about childhood cancer on some of my posts. My hope is to raise awareness about the lack of research funding that goes to childhood cancer.
Although the 5 year survival
rate is steadily increasing, one
quarter of children will die 5
years from the time of diagnosis.
you asked “when did we know when Cody was sick.” Well it's a little long but I will try my best to keep it short. We first though he had hurt his leg at the sitter. He started not wanting to walk and wanted to be held all the time. He then developed a fever. All these symptoms started while we were on vacation at Nags Head in 04. The whole week was extremely stressful. After getting back from the beach Diane took Cody into to our family pediatrician. He sent us over to the hospital immediately for blood work. After getting the results he told us to go to a cancer specialist in
Here is a picture of the kids on Mothers Day 04. This was typical Cody.
So, to make a long story short, he developed fever, and his joints of his legs and ankles were hurting him very bad. The way neuroblastoma works is that it gets into the bone marrow. It is a very aggressive cancer and grows quickly. Once in the marrow it creates pressure in the bones which is why his joints hurt. Here is a quick definition of the cancer from BOP.
What is neuroblastoma? It is a childhood cancer of the sympathetic
nervous system, affecting approximately 650 children in
tumor in infants. Most children are diagnosed by 2.5 years
of age. Up to sixty percent of them have high risk disease that has metastasized (spread to other parts of the body) by the time they are
diagnosed. Survival is dependent on age and disease stage: children diagnosed before the age of 18 months have a high survival rate, but high
risk children diagnosed before age 5 have about a 30 percent chance of growing up. For children over age 5, teens, and adults, the prognosis is
Friday, December 21, 2007
deaths of children in the United States and kills more
children per year than cystic fibrosis, muscular
dystrophy, asthma and AIDS combined.
Each child in the U.S. diagnosed with
cancer receives approximately one-sixth
of the federal research support allocated
to each patient afflicted with AIDS. Yet in
2004, 48 new cases of pediatric AIDS
were diagnosed vs. more than 12,000
pediatric cancer cases.
Each school day, 46
children are diagnosed with
The National Cancer Institute's (NCI) federal
budget was $4.6 billion. Of that, breast cancer
received 12%, prostate cancer received 7%,
and all 12 major groups of pediatric cancers
combined received less than 3% .
Thursday, December 20, 2007
Cross your fingers and knock on wood, we will be home through the holidays....
Just feels good to be home.
Mom playing a video game.
You can't hide from the flash.... :D
Wednesday, December 19, 2007
He was in great spirits last night. I hope this is a sign of things to come. If we can keep him from being in too much pain it should go a little easier on him. He is still sleeping and I'm not going to wake him. He deserves all the sleep he wants. Last night at 9 he ate a bowl of Oreo ice cream then at 10 he had a cheese hot dog and again at 11:30 he had another bowl of ice cream. At this point we let him eat anything and everything he wants.
While peeing every hour last night we played games. We played Gameboy Battleship, regular Battleship, Life "The Pirates Edition", Funny Bunny and Webkinz. I've just recently learned of Webkinz. They are little Beany Baby like stuffed animals that have a secret code on their tag. You use this code to register your pet online. There are all sorts of games that you can play and do to earn funny money. You use this funny money to purchase things online for your virtual pet. All the kids have them and they can send little letters and gifts to one another. Justin, Daniela and Cody really seem to like it.
Well I hope he feels as good today as he did yesterday... I'll write more later...
Thanks for reading...
Tuesday, December 18, 2007
I've said it before and I'll say it again, "I'm very lucky to work for such a great company." Not just the company but many of my very close friends that I work with. They have been so supportive during this go around and when it happened the first time. The girls have been great. Lori, Kelly, Lisa, Linda and Susan have been coming over to my house in the afternoon and helping Justin and Daniela with school homework. Others have made dinner and volunteered to do Christmas shopping for my wife and me. My sister-in-law, father-in-law and mother-in-law have got the kids off the bus, made dinner, cleaned the house, washed the clothes and did all the leaves in the yard. Trust me, that is a lot of leaves... :D Thanks to all of you..... I know that my family would love to help but they live all over the U.S. It makes it very hard... I love all of you and wish you lived closer..
Yesterday gives you all a glimpse into our lives. Diane and I try so hard to stay strong but it's hard to do everyday. One reason this is so hard besides the obvious is that none of this is written in stone. Things change everyday and we can't bank on anything. We don't even know that this will work. We can only hope and pray that it does.. Sometimes we just need to cry, shout, scream or just plain shut down. I go to sleep at night with 100s of things on my mind. I'm lucky to make it to 5am without waking up. If I wake up it's usually all over. My mind starts wondering and I can't go back to sleep. Lately I've woken hoping that this has all been a dream. I know, that's sounds so cliche but it's true. I wake up and look next to me hoping that Diane and Cody are in the room but no such luck.
Cody is in pretty good spirits this evening. It's 6:30 pm and he is napping. They will be starting the chemo @ 8pm and he will have to go pee every hour. They don't want this to sit in his bladder too long or it will damage it. They check for blood in his urine during this period. Diane said that he was awake until 2am this morning. It may be another one of those nights.
Monday, December 17, 2007
We did go to see the Festival of Lights last night. It has become a yearly tradition for use. They deck a local park out with lights and you pay $20 to drive through it. We really do like it.
I'm starting to feel angry now. I'm starting to question why a God would do this to any child. I watched Cody playing the past few days and I can't help but think that this will be the best his is going to feel in a long time. The cumulative effect of each chemo is very hard to watch on any person let alone a child. He is just starting to eat again. He's just starting to be himself without getting angry at the drop of a hat. My hope is that someday no one will ever have to watch while their child is being poisoned just to try and save their life. The whole concept seems so archaic. As much as I try not to, I can't help but think how terrible it would feel to not have Cody in my life. How can I put him through this? How can I not do what the doctors say is the only way to save his life. I look at him and I just feel like running away with him and taking him from all of this pain and suffering. I looked at his group soccer picture yesterday for the first time. I'm an idiot for not seeing that he was getting sick again. It is in his eyes. The look of pain... I hate all of this....
Saturday, December 15, 2007
Now the not so good news. We were hoping that he would have a break until after Christmas before starting his next round of chemo. The doctor told us that if his numbers are still getting better Monday they will admit him and get ready to start the next round. Not what we wanted to hear. The doctor also said that she would work with us. Meaning, his chemo is finished before Christmas we can take him home. Unfortunately we know all too well how this works. He will not be in any kind of shape to enjoy Christmas for weeks after his treatment. And when the first fever hits he will be back in the hospital. This is the train of thought that is being used. If his body is feeling better and recovered from the chemo so is the cancer. So, they want to jump on it while it's down. This is going to be a very stressful Christmas. There are times when I wonder if I can keep it all together through this...
Friday, December 14, 2007
This great photo was taken by the Washington Post. I would like to thank them for letting me use this photo. It was taken at the Georgetown Lombardi Cancer Center. The Virginia local and state police put on a toy drive and they deliver the toys to kids at many of the area hospitals.
He had a very peaceful night last night. I'm sure he enjoyed not being poked every 3 hours.. :D
I'll write more later.
Thursday, December 13, 2007
I forgot to mention that we did very good on our security audit. That is one less thing to worry about.. :D
I'll be posting more pictures when we get home... He looks so handsome without hair... :D
Wednesday, December 12, 2007
Cody is suppose to get platelets and his GCSF before we go home so hopefully he can get it done early. If he gets that done we won't have to come back until Monday...
Tuesday, December 11, 2007
Yesterday his ANC was 8 and today it is 40. The way it looks now is that he should be able to go home on friday.
He seems to be doing pretty good again today. You can tell when he is feeling good.
His neutophils were up to 8 yesterday. They have 0 since his chemo. They have to get up to 100 before he will be aloud to leave. I'm lobbying hard so he won't have to start his next session until after Xmas. The doctor says that should be OK.
He continues to look and act better everyday. One of the hardest things about this whole process is having to bring him in for the next session. When you see him recover from this very hard chemo you almost don't want him to go back through it again. I know it's for the best but sometimes that is still hard to put him through it. I'll post his neutrophil numbers as soon as I get them..
Monday, December 10, 2007
Man, I'll be glad when Cody gets to come home. It is just so hard to get anything done at home or work. I have a big government audit this week. I will have to pay bills this week. And, I've got to get a few groceries in the fridge for the kids. We have a wonderful group of people that have been helping us out. Friends from my work come over and help Justin with his school work. He needs all the help he can get. Diane's family comes by and gets the kids off the bus and stays with them until we get home. To top it off it's not like there isn't anything else going on this time of year. ;D There is not enough time in the day, and that is the truth.
Cody had another very good day yesterday. He continues to feel better and eat better. We are still waiting for his blood numbers to start coming up. He will not be aloud home until then. I'm hoping that he won't have to start his next round of chemo until after Xmass. It all depends on how soon his body comes back from the first round.
I thank all of you for the great cards and well wishes that you have sent to Cody. I promise to drop you all a note when I get a chance. We take the cards and stuff into him so he can open them but then bring them back home so we don't have a ton of stuff to carry out when he leaves. He loves the hand written cards from the other kids. They are the best!!!
Saturday, December 8, 2007
We came back to the room and then played Battleship and then his Carnival game. He also ate pretty well for me. I brought him in a cheeseburger and fries. He ate most of the burger and a few fries. We then played some catch with a ball in his bed. The last few nights he's been taking a nap between 4 to 6 and then staying up until 12 a.m. Today he just fell asleep around 9:45.
He received both blood and platelets today. I think that gave him some added energy. We hope his blood numbers start coming back on their own soon.
I got up early this morning and took Justin and Daniela to Fantasy Flight. It is a party that is put on by United Airlines at Dulles Airport. They give young children with all kind of health issues a party at the North Pole. We start out getting on a 747. They ask the children to keep their windows closed because the route to the North Pole is Top Secret. :D Then the plane taxis down the runway and docks at a terminal that is near the end of the airport. This terminal is decked out like the North Pole. We've attended this for 4 years. Unfortunately Cody has only gone once. He has been sick the other times. They give gifts to the children and have a great spread of food. The kids love it. Kudos to United and their employee's who donate their time and money. I know that the fuel used to taxi down the runway probably isn't cheap.
Diane is going to relieve me a little early tomorrow. I want to go to a friend's house to watch my Steelers hopefully destroy the Patriots. :D
Friday, December 7, 2007
The kids playing a new game. Justin and Daniela were so happy to be with Cody. Cody seems to have trouble with all of this. It's hard to tell what he thinks.
His hair was falling out in clumps so it was time to cut it off.
He's painting his ginger bread house.
I had to sneak a kiss. He's always playing hard to get. He gets that from his mother.
Thursday, December 6, 2007
I will post some good pictures tomorrow evening when I get home. I'll post again tomorrow.
Wednesday, December 5, 2007
Cody is having a great morning. He's had no morphine since last evening and he is the old Cody. He's happy and has been eating since he got up this morning. They have changed his antibiotics because they think the pain is coming from inflammation of his lower digestive track caused by the chemo. I pray things keep going like this and keep getting better from here..
Tuesday, December 4, 2007
I was laying in bed with him this evening and I noticed that his hair is really falling out now. I think I'll be bringing the trimmers in on Thursday so I can cut his hair and mine. :D
Monday, December 3, 2007
Sunday, December 2, 2007
Thanks again to all of you who have been praying for Cody... This battle is very far from over for him. In fact, it's just the very beginning but it's a great start... God Bless You All!!!!!
Saturday, December 1, 2007
Last night was my company's Christmas party. I had been really looking forward to going but it seems so unimportant now.
The nurse was just in taking his blood labs this morning. She said that he will be getting whole blood this morning. So, I guess we are going to find out how the Claratin works huh?
I'll write more later...
Friday, November 30, 2007
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
I'll write more later....
I'll write more later.
Wednesday, November 28, 2007
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.....
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
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..
I will write more later today...
Monday, November 26, 2007
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
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
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
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...
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
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
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.
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
Saturday, November 10, 2007
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.
Tuesday, November 6, 2007
Here are a couple of pictures of Big Man and me.
Thursday, November 1, 2007
Wednesday, October 31, 2007
My mileage for the month of October is 173.54 and 1362.56 for the year..
Monday, October 29, 2007
I'm down to 19 days and a wakeup. The battle for me now is to control my eating so I don't gain any weight before my race. Actually I'd like to lose a few pounds before I race. According to RW writer Amby Burfoot, you trim 2 seconds per mile off your time for every pound you lose. Now that may not seem like much but over 26.2 miles it adds up to almost one minute. I know, I know, you are saying "Deck, that isn't that much either" but for me that 1 minute may very well be the difference of me making Boston or not. Right now I think I'm very close to being ready. I will be running at just under 8 minute miles to qualify. I need 3:30:59 or less. Many of my races this year have been well under that but none of them have been for 26.2 miles. My legs are pretty strong right now but they definitely need the taper.
Tuesday, October 23, 2007
Sunday, October 21, 2007
Mile #1 8:17
Mile #2 8:45
Mile #3 8:36
Mile #4 8:36
Mile #5 8:39
Mile #6 8:39
Mile #7 8:29
Mile #8 8:30
Mile #9 8:17
Mile #10 8:22
Mile #11 8:27
Mile #12 8:48
Mile #13 8:46
Mile #14 8:44
Mile #15 8:51
Mile #16 8:50
Mile #17 8:51
Mile #18 8:45
Mile #19 8:51
Mile #20 8:49
Friday, October 19, 2007
29 days and counting...
Thursday, October 18, 2007
I found out part of my fall work schedule this week. I'll be heading to Kings Bay GA the first week of November. Then I'll be heading back out to Bremerton WA at the end of the month. This all is neatly wrapped around a very big event for me. I'm exactly 1 month away from Philly as you can see by the ticker. I haven't even started my taper and I'm already second guessing myself. Fortunately I've been through this before. You never feel like your ready I guess.
I'll try to post more pictures of the kids sometime soon. They are getting so big. Cody had his scans this week to look at his back. He has what appears to be a muscle that is larger on one side of his back. You only see it when he has his shirt off and moves a certain way. The doctor says that he has a slight curvature of the spine. They believe that it may have been caused by the radiation treatment he had. They also think that the muscle issue may have been caused by the spine. It's believed that the muscle is over compensating for the curvature of the spine.
More later.... :D