Friday, February 29, 2008
Thursday, February 28, 2008
Dr. Modack seems like a very sharp guy to me. I think it is going to take Diane a while to get use to him. You see, we are use to dealing with women doctors who have a much different way of delivering information to people. I don't want to say they sugar coat things but they are more reassuring when discussing treatments and possible outcomes. I think Dr. Modack will have to get use to dealing with Diane also. I'm still not use to it.. :D
We discussed a few options that we have but I'm not going to get into that yet. It seems like the more I learn, the more I don't know. Cody is scheduled to get his nuclear injection today. Then, tomorrow will be a very busy day. He will have a MIBG, MRI and 4 point bone marrow. He will need to be sedated for all 3 of them. We will not know much until next week I'm sure. I learned a couple of days ago that Cody's surgery at Georgetown is not a done deal yet. We are going to wait until the surgeon up here looks at the scans and test and both Dr. Modack and Dr. Abu-Gosh talk with the surgeons and decide what is best for Cody.
I got a few great pictures yesterday and last night. We went to Time Square show Cody the lights and to walk around. Although it was pretty cold we still managed to get around a little. We will be going to see Lion King on Broadway tonight. A good friend of ours at Georgetown lined up some tickets for us.
That's about it for now...
Thanks to Liz and my other NY running friends for all the great info. I did manage to find a great deli yesterday. I bought two large coffees and two bagels with cream cheese for 5 dollars. :D
Tuesday, February 26, 2008
Culture shock... We had breakfast about 10:30. We went to a little restaurant up the street. 2 eggs, 2 pieces of bacon, 2 pieces of toast and coffee costs $8.95. Now for some of you who live here or in other parts of the world this may seem normal but in Manassas it would cost about $4.00. We stopped to get a few things that the local grocery store. A small box of cereal is 6.85, a 5oz. bag of chips is $3.69. The problem is if we drive up here we can bring this kinda stuff with us. But, if we drive we also have to pay parking everyday which is very expensive. Everything is relative I guess. People here make allot more money but the cost of living is much higher. I guess we will have to plan better.
Cody is feeling pretty good. He is running all over the place. He is having a good time. I hope it continues...
Monday, February 25, 2008
When we get back from NY next week we know that Cody's surgery is the following week. He will have a much larger scare than his first surgery. The doctor described it as the Mercedes Benz logo. Our poor little boy. He just doesn't know what is going on. He really doesn't ask many questions either. He just lives for today. It is so hard to stay focused on the positive, especially as I learn more and more about this evil disease. I have to just keep saying "one foot in front of the other."
We are looking forward to seeing NY. I will post when I get chances to do so.
Sunday, February 24, 2008
Saturday, February 23, 2008
Now for my second iron in the fire. Many of you may know that I dabble in drawing. I've had a little formal training when I lived in Pensacola FL. I stopped for a few years because the kids were small and it's hard to leave half finished work laying around with little ones. Well I have had a renewed inspiration to start drawing again. I have decided to do a 4 or 5 drawing set of Pirates. I've just about finished my second drawing already. It's easy to draw when you have inspiration. To me, drawing must be kinda like writing songs or books is for writers. When I get the time I will take the drawings up to get digital copies made so I can share them with everyone.
I'll write more later...
As promised here are a couple of pictures from this morning.
Cody wearing his pirate skull cap, complements of "Kirk", my buddy from Runnersworld. Thanks, Kirk..... Cody loves your gifts...
Friday, February 22, 2008
I also heard from Corporate Angel yesterday. They informed me that we have seats on a AOL-Time Warner jet on Tuesday morning. We will be going to a small hanger that is adjacent to Dulles Airport. No security lines or waiting in the terminal. How sweet is that? :D
Cody is really looking good. His appetite is still not the best but it gets better and better everyday. I'll try to get some pictures this evening and post them. I will be taking plenty of pictures next week also. A good friend at Georgetown has lined up tickets to see Lion King on Broadway for Thursday night. I've never been so this will be a good time for all of us. I guess they have things available at the Ronald McDonald House also. They try to make your stay as comfortable as possible. I think we will be staying close to the room on Friday because Cody has 3 or 4 procedures on Friday. One of the is them is the bone marrow test. They will extracting from 4 spots which probably make him very sore for a couple of days.
On the way home yesterday I ran over something on the road. Well, it's a good thing I was close to home because when I went out this morning to go to work my left front tire was flat. I put the spare on in the garage which was good. It's raining and very icy out this morning. I looked at the tire I took off and there is a big piece of metal sticking out of the tread.
Thursday, February 21, 2008
Our son Justin is really not looking forward to us making the trip. The kids have never spent that much time away from Diane. I've traveled for work before so I think they won't miss me that much. Every night before bed, Justin asks "when are we going," and "how long are we going to be gone?" I think in the future, either Diane or I will make this trip with Cody alone. It just seems like that will be easier on the other kids.
Tuesday, February 19, 2008
We will be taking Corporate Angel up to New York. We could drive but with gas and parking it would be foolish. The fact that a car would be pretty much useless up there anyway makes it a no brainer.
We are just going to enjoy our time at home before the next step...
Thanks for reading.
Monday, February 18, 2008
Sunday, February 17, 2008
We will have a pretty busy couple of days before we leave. Cody goes to clinic on Tuesday. Just goes to the doctor the same day. We have many things to plan before we leave. We are lucky though. We have a tremendous amount of help from family and friends. That's my motto, "he who dies with the most friends wins." Even with all my short comings I still have people who talk to me... LOL
Saturday, February 16, 2008
We are planning to go see Spiderwick today. Justin has been reading the books so he is especially excited.
We still haven't got the final word from MSK about the trip. We are sure we are going but we can't line up the flight and room at the Ronald McDonald House with out the orders. Diane is not much for flying but we both agree that's the best way for us to go up. With parking and gas it would cost us more than we need to spend. I'll keep you all abreast of what we are doing.
Thanks for stopping in.
Thursday, February 14, 2008
Today was a very special day. Cody had a rough time sleeping last night because he was so excited about the party today. The party wasn't until 2pm so all day long he was asking Diane if it was time to go yet. When we arrived at the school we checked in at the main office and Cody had hugs for everyone. He hugged the secretaries, he hugged the nurse, he hugged the principal too. He also had hugs for both of his teachers. He was so happy to be back in school. It was a very emotional time. Cody wore his mask and his camo skull cap. We brought some extra masks for the other kids if they wanted them. After Cody was settled in I asked him if he wanted to take his cap off. At first he said no but then changed his mind. The other kids were amazed and concerned but after we explained why his hair was gone they didn't say another word. It was like he had never missed a day. I stayed for an hour but had to go back to work. Diane stayed with Cody and finished the party. Dr. Abu Gosh said that when his counts are up there is no reason that he can't go and spend some time at school.
Well we have a bit more of a plan now. Diane received a call from Dr. Modack up at MSKCC. It looks like we will be heading up the end of next week. Right now it looks like we will be heading up on Wednesday evening and staying for about 7 days. The Dr. did mention to Diane that he thought that it would very strange for one tumor to shrink and a new one to grow. That statement made me feel a little better. We will decide in the next days how we are going to get up there. I look forward to meeting some of my running friends while up there. Hey RunWest, Park Runner, Liz and I Love New York. I hope to get a run in Central Park with you all while I'm up there.
I hope you enjoy the pictures...
Wednesday, February 13, 2008
Tomorrow is going to be a special day also... Yes it is Valentines Day, but it's more than that. We are going to take Cody in to his class so he can exchange valentines with all of them. He has not seen his teachers and the other students since November when he got sick again. You know we will be filming and taking pictures of that. I put out a couple of feelers to the Washington Post and Channel 4 news and told them Cody's story. I did it in hopes of raising awareness about Neuroblastoma. Since joining the Band Of Parents I've been feeling the need to become more proactive in the fight against this disease. I don't want to wait until something bad happens. Cody will be the perfect person to help do this... I have not heard back from either of them yet I hope today one of them will give me a call.
I will post later today to let everyone know the outcome of the scans... Keep praying please....
Well we just got back and we have mixed results. On the good side the tumor did shrink. On the other side, there appears to be a new lesion right below the tumor. It's rather small but that is how they start. The doctor is sending his blood sample out for tests of fungus. We hope and pray that is what it is. This roller coaster ride never seems to end. I don't know what to say right now.
Monday, February 11, 2008
Thanks for stopping by.
I found out earlier today that I will be taking him in on Wednesday for his scans. So, we canceled his appointment for tomorrow and we will kill two birds with one stone on Wednesday.
Here is a picture from earlier today. Notice anything different? :D
Here is the lost Hanna Montana picture.. :D "Cody letting his freak flag fly, wearing his sister's wig."
This is Cody and his cousin Chris. They are very close and Chris always stops in to spend time when he is home from school. Maybe Cody was doing his best Chris impression.. :D Chris has always been a big part of Cody's life.
Saturday, February 9, 2008
Friday, February 8, 2008
This picture makes me cry.... I can't imagine life without this smile...
Here is Cody playing his favorite game in the world..
Thursday, February 7, 2008
Since I don't give Justin and Daniela enough face time, here they are! I just got back from my 5 mile run and they are doing their Webkinz before the school bus gets here so I thought I'd get a picture.. Mom, they say, "Hello!" Cody has a teacher coming to the house today. They will start coming two days a week while he is home so he can keep up. Although I must say, he is very advanced for a kindergarten. I'll post more later...
A couple days ago we joined "Band of Parents". Their link is to the right of my blog. The title pretty much says it all. We are parents of children with neuroblastoma. We are part of a club that you really don't want to be a member of. If you don't know how terrible this evil disease is you will soon find out by following my blog. Although I don't want to post bad news, I feel I must raise awareness about this childhood cancer. Being a member of BOP we get updates on others who are going through what we are. At this time I'd like to ask for prayers of healing for the hearts of Holly, John and Kiersten Moore. They have just lost their 5 year old son Carter to neuroblastoma. Carter was just diagnosed in June of 2007. This really shows you how fast and devastating this disease is. Here is the link to Carter's
CaringBridge site. God Bless You Moore Family!!!!
Wednesday, February 6, 2008
Tuesday, February 5, 2008
Cody is wearing a Key West Pirate shirt compliments of G2G (Norine). He only had it on for an hour. While sitting at the diner table Daniela accidentally spilled something and it went all over his shirt. He was not very happy about that. I had the great pleasure of meeting up with Norine in November at the Philly Marathon. Norine, Cody loved the Pirate stuff. You definitely knew what you were doing... :D He says thanks...
This photo is before bed. Justin and Daniela are in bed and he is getting some last minute play time... Just happy to be home.. :D
Again, we are waiting for the results of his blood draw. They should be back around noon. We are hoping for a big jump from yesterday.
I would like to say "hello" to Sherry, Rob and their children Jenna and Brandon Will. They lost their daughter Ashlynne in December to neuroblastoma. Sherry, Rob and family have lived our nightmare and more. I hope they drop in and say "hi". My heart goes out to them... Diane and I were introduced to them by the fine people of ACCA. ACCA is an Air Conditioning Contractors Association that did a tremendous amout of work around our house when Cody was diagnosed the first time. They provided Christmas for the kids when Mom and Dad were busy dealing with Cody. We are forever indebted to them.
I will post more when I get more info....
I just spoke to Cody's nurse, Kelly. She said his numbers are at 470. She has to wait to ask the doctor if we can leave today. Technically speaking he must be at 500 but I think if they would do his blood again right now it would be 500. They draw blood at 4am so I know it is higher than 470 now. Cross your fingers....
1400 and we are HOME!!!!! He is playing Webkinz and chillin.... :D
Monday, February 4, 2008
I'll post his numbers as soon as I hear from Diane.....
I just spoke with Diane. She said his numbers went down to 172. I'm not quite sure how or why that happened but it did. So, it looks like he will be in for at least one or two more days...
Sunday, February 3, 2008
He is such a little shyster. I've been trying for weeks to clip his nails but he hardly ever lets me do it. This morning I thought that I would offer him 25 cents for each nail he would let me clip. Well you know he took me up on that offer. It cost me 5 dollars to do all his nails. He has been selling his bubble gum for 25 cents a piece. Linda, who does artwork and plays with the kids up here brought him bags of candy so he could sell it. He sells it to all the doctors and nurses who come to see him. Cody says he is saving his money to go to the beach. He has also told me he wants to go back to Disney World. We went there for his Make-A-Wish. We had a great time. That will have to wait until he is back on his feet again...
I got my 5 mile run in this morning. It was in the upper 30's but very nice. I even wore shorts, which was nice.
I'll post more later......
I just found out that Cody's ANC level is now 204. Wow!!! After being 12 yesterday that is not too shabby is it? When he comes back, he comes back! I havn't spoken to the doctor yet but I would say he is going to come home by Tuesday if his blood continues to recover like this... :D
Saturday, February 2, 2008
Last night I got home and Justin wanted to spend the night at my sister-in-laws. It was just Daniela and I so even though I was bushed we went to the movies. It was a nice father daughter night. We went to see Alvin and the chipmunks. It was pretty hard to keep my eyes open but she really liked it... :D
Thanks again for the prayers and kind words. I'll post again later after I find out what his blood work turns out to be.
Well I'm back at the hospital doing my shift. When I got here Diane and Cody were outside. She had him in a wagon and they were down by the fish pond. We took him up by the soccer field and the observatory. It was chilly but he really enjoyed getting out. We kept him outside for about an hour or so.
We are in a room that he has never been in before. It's much larger than the others and it is probably the quietest. It has a private shower and it's about 3 feet wider than the other rooms. You know I'll be getting out for a run tomorrow.
Cody's ANC number is 12 today. It will probably double tomorrow and needs to be around 500 to go home. Usually once it starts going up it goes crazy. He could be at 500 in 3 or 4 days.
Have a great evening all.......
Friday, February 1, 2008
Thanks again for stopping by and I'll post more later...