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...