Good Sunday Morning Everyone.....

Well it has been a busy week and I apologize for not updating the blog. With the kids in school and Diane and I at work it is the normal busy week like everyone else. By the time I get the kids off the bus, do homework, fix dinner and give them baths it's almost time for bed. And yes I mean my bed time. I'm wore out by that time.

We had a couple of Diane's family members stop by yesterday. Cora Ann and Betty both of which follow this blog quite frequently. Cora Ann reminded me that she checks the blog everyday. I guess that means that I better get busy... :) Thank you...

Last week was great. I think it is the most normal week we have had since last November. Other than the little white pills that Cody gets daily, he is getting no meds to speak of until a week from this coming Wednesday. That is when he will start drinking the 3f8 pre-meds that he drinks before going to the hospital in N.Y. Justin started scouts this past week and Daniela is doing cheerleading. We will have to take Cody in to the hospital this week so he can have his blood checked for HAMA. It has to be sent up to N.Y. for the test. They will let us know if he can start the pre-meds.

Here are a couple of pictures from Daniela's cheerleading and the pumpkin patch trip last Saturday.




Here is Daniela and the rest of her team. The little girl standing beside Daniela is Beth. Beth is Daniela's second cousin.


The girls doing a good job. Daniela and Beth really like cheer leading.


There they are, way up there.


Looks like fun...


Tarzan, lord of the sponges...




Here they are with a group from Candlelighters.




This is Cody at the Ronald McDonald House. He wanted the face painting kit for his daily treat.


Please don't forget about the yardsale next weekend. Get out those odds and ends that you have wanted to get rid of and help a good cause.

God Bless you all!!!!!

Big BOP Yard sale!!!!!

For those of you who live in the Manassas or Northern Virginia area we are in need of your stuff!! Anything that you would want to donate to a yard sale that all proceeds are going to BOP.

My good friend Trish has volunteered her time while another good friend Lynn has offered her yard for the sale. The date of the sale is October 4th. Trish has asked that I pass her email address along so anyone that wants to donate something or help can contact her. You can reach her at (plang1@comcast.net) and she can give the address of the sale. I'd rather not post that to the world. I'd like to thank Trish and Lynn for all of their help. It is really appriciated.

My daughter Corie was talking about a bake sale at Bethesda Naval Hospital. She lives in Manassas also but I'm sure she would take donations from Maryland or Virginia. When she gives me more info I will pass it on.

I'd like to put out a special thanks to all of you. There is much for everyone to worry about right now and the fact that you all take the time to check in and pray for Cody and other children like him really means alot. Bless you all.

Oh, I almost forgot... Cody has been in school this week and is doing very well. He seems to settling in just fine. His hair is just starting to come back. There is a little peach fuzz growing in. :)

We are home.....

Cody and I got home last night about 8:30. His greeting with his mother at Union Station was like something out of the movies. They are so very close and I don't begrudge Diane at all. I have my own type of relationship with Cody.

A quick note on the end of the week. As good as Wednesday was Thursday was that bad. He needed 1 rescue and it is very hard for him to get himself together as it wears off. Yesterday he was an absolute angel. The dance therapist was with us again and it makes all the difference in the world. The bad thing is, she can't be with us everyday. We are lucky enough to have her because of Marie @ Georgetown. She put in some calls and set it up for us.

We are now home for 3 weeks. As long as Cody does not HAMA we will be heading back around October 13th.

Today we went to Cox Farm for a hay ride and pumpkins and such. We had about 2 good hours before Cody ran out of steam. It was a wonderful day.

Here is a couple of pictures from the professional photographer that did our shots at Ocean City. He did a wonderful job. I'd like to give credit to John Mick Photography of Ocean City MD.

Yesterday was so much different....

Let me rewind to Tuesday afternoon. Cody's treatment went very well on Tuesday and he was his usual loving self. But then came the late afternoon.... When we got back to the room to get ready for dinner Cody wanted to log on one of his many new Webkinz. That is where it all went bad. He didn't do well on one of the Webkinz games and he turned into Jekyll and Hyde. From then on I was the worst dad ever. He basically through a fit from the time we went down to the dining hall till we were ready to go to bed. I attribute this to him coming down off the pain meds. It just takes the littlest thing to set him off. So needless to say I was glad to get him to bed.

Yesterday he did a 180. Through the treatment he didn't need any rescue meds. He got the basic pre-meds and that was it. At first I was worried because when they don't feel pain it is a sign that they are becoming immune (HAMA) to the 3f8. But after talking to the nurse she reminded me that his heart rate was still very high which is a good sign of pain. Also, when kids get 3f8 for 2 weeks as apposed to 1 they often do much better on the second week. Cody also had a wonderful young lady working with him. She is a dance therapist. Her job is to play, talk with a very calming voice, play meditation music and try to get the child to focus on something other than the pain. Well, she did a very good job. As I said, for the first time during these treatments he didn't need extra meds. The other great part of this is he was able to get back to his old self again much quicker. It was a good day..

This place is like family! I just want to give a well deserved kudos to the wonderful people at Ronald McDonald House. They do a great job making this hard time a little more bearable. This place gives us a chance to recharge after a hard day. It's also nice being around others who are going through the same thing we are. The other families here are very much like extended family. It gives us a chance to talk, laugh and cry together. Many of them are in the very same boat we are. They are very understanding when kids are have a bad day. They have all been there.

I hope some of you are thinking about what I wrote yesterday. I don't usually get much feedback when I make a post like that so I don't know.

Tomorrow is get away day. Hopefully things go well for Cody tomorrow and we are able to catch the train in the evening. If not we can leave on Saturday if need be. It will just be nice to let him get back home... I'll be praying for that....

Moon, thank you for the kind words. I means a great deal to me....

Bye for now..

In search of a BIG fish....

I want to take a minute before Cody and I head up to the hospital to ask for your help. We as parents of children with neuroblastoma have a very full plate as many of you know. Our days consist of the following. We have jobs like everyone else. We have other children that need our love and attention. We have children that are ill and fighting the good fight. We spend days, weeks and months at the hospital trying to give our children the best chance of survival. On top of all of this we must raise our own money for research to find a cure for this awful disease which is stealing our children. We do fund raisers and little things to raise money which helps but this falling well short of the needed funds. Once again I put a call out to you, friends, family and people who care. I'm sure if all of you take a minute to think about it, you know someone..... You know someone who has the resources, the funds or the connections that can help us. Someone who you may have went to school with. Someone that may be married to a friend. Or just a friend. Most companies or people who are "well to do" often donate money rather than give it to the tax man. That is what the "BOP" desperately needs. We also need a face.... A person that is famous or someone that the public knows or recognizes. Please, please, please... You never know unless you ask. Reach out and make that call. You could be saving many lives with your efforts....

God bless you all for reading and praying for Cody......

Where to start..

Trying to describe Cody's new treatment is quite hard to do. The day started early, around 8am. Diane thought that we had to be there early on Monday but it turns out that is only on the first Monday of the treatment. So we arrived and they did Cody's blood work. The rest of the morning Cody and I spent playing in the recreation room waiting for his noon appointment. Well like most places Mondays are quite crazy at MSK and yesterday was no exception. It was around 3pm and most of the morning kids were done and heading out the door when I finally went to ask about Cody's treatment. They had Cody slated to be in a certain room with a certain nurse and it just so happens that the child before Cody had some complications which pushed us back. Oh well, that is the way it goes. We are use to things not going exactly as planned. So they decided to put us in a different room with a different nurse. We finally got started and things were going pretty well. There was a child psychologist sitting in on his treatment. I'm not sure if that is the norm but I welcomed the support and company. Cody did extremely well at the beginning. In fact, he made it as far as getting all the 3f8 being administered and the flush before things fell apart. Until this point we played a card game called "around the clock" which is something like solitaire. Then we started playing his new favorite game "poker". He amazed the psychologist and nurses with his understanding of the game. I know he is my son and I may be a little biased but I have to admit, he is so smart. Anyway, up to this point other than periodically drifting off in a daze he did great. As soon as the flush started I noticed his ears getting extremely red then his heart rate started going up. All of the sudden he started talking like he was holding his breath and talking at the same time. He began to panic a little as did I. The nurse was right there as she started giving him a breathing treatment. This is oxygen with some type of liquid that forms a mist which he inhales. He did it without question. Then the pain started in his abdominal area. The nurse gave him 3 rescues which are pain meds injected right into his line. She also asked him if he wanted to try some heat packs on his belly which he declined. Then she asked if he wanted some cold packs which he accepted. Now, I know that you are wondering "why offer warm and then cold." Well, the only way I can explain it is that all kids that go through this are different and they all experience something a little different. Last week Cody didn't want anything to do with either. In fact Diane was amazed that he wanted the cold packs. He had a total of 7 cold packs on his belly and back. It seemed to make him feel better so that is all that matters. The nurses are very understanding and do whatever the child wants, even if it is just "not talking." Through this process I have to say that I just felt totally helpless. I wanted to pick him up and hold him but I know he would never stand for that. At one point I almost started to cry when I saw he was having a hard time breathing. If this makes sense, I would kinda compare it to a religious experience. When you come out on the other side, you feel different. During this process Cody seemed to go from one end of the emotional spectrum to the other. He gave out more hugs and kisses to me and the nurses than "two teenagers on a hot date." One minute he was cussing me and the next he was saying he was sorry and he loved me. From 3pm to 8pm he told me he loved me at least every 5 minutes. After the pain was over the best way I can describe him is a "happy drunk." He loved everyone. Everyone we passed on the street and in the halls he said "hello". In fact, as we were getting off the elevator to go downstairs to eat he even helped a lady who was getting on the elevator. He was such a little gentleman. The lady looked in with amazement and gave him a big smile and a "thank you young man." As we walked away Cody looked at me and said, "it's good to be nice to old people right dad?" He is something else....

That's about it for now. I'm sorry for the long paragraph. I didn't know where to break it up. It is kinda like yesterday, just one long day....

Sunday morning in New York...

Hey folks, I relieved Diane yesterday. I arrived Friday night on the train, and no I didn't get off in New Jersey this time... :) When I got here I knocked on the room door and Cody greeted me with one of his patented wrestling hugs. It was so awesome. He has not wanted to talk to me or anyone else for that matter since starting his new treatment. He looked like he had quite a week. His eyes and face were all swollen from the meds I guess. His head looks like it's made of old brown shoe leather. It is brown and cracked from our week at the beach despite the application of sun screen. It's scuffed from the almost countless bruises and scabs from dives and falls from the couch, the wall at the board walk in Ocean City and the tunnels at Chuckie Cheese. There is now a very tiny bit of peach fuzz growing on his head. That showing signs of the beginning of his much needed head protection, "hair". He has had a very tough week and has one more before he gets a three week break at home. Then, it will start all over again.

Diane could have left Friday night but chose to stay and enjoy one good day with Cody before heading home. We got up yesterday morning and Cody took his meds. Then we headed over to Central Park. We had a great day... We walked the park for a while with Cody sampling many of the $2, $3 and $4 ice cream vendors treats. We then talked him into a carriage ride on a horse drawn carriage. He really didn't want to do it at first but after seeing one of the beautiful animals up close he gave in. We rode with a wonderful fellow from Ireland named Robert. His horse's name was Betty. We rode around the park learning a few things about Manhattan and the rich folks when Cody spotted a small carnival down where the ice skating rink is during the winter months. Cody had a good time riding the rides and playing games. Diane and I agreed that he would've had a better time if Justin or Daniela was there with him but he didn't complain. About 3pm we headed back so Diane could catch a train. Cody fell asleep in the stroller on the way back. Diane said this was the best mood he has been in all week. I can understand why.

Cody received many birthday gifts from the hospital, Ronald McDonald House and from his good friends at Georgetown. One that he talked me into playing with is a poker set. That's right, poker. You all know how good Cody is at playing Monopoly and now we can add poker to his repertoire. Now, Diane as my witness I have to tell you what one of Cody's very first hands turned out to be. A "Royal Flush"! That's right, some people go a lifetime without getting one and he achieved it in less that 10 minutes. Now I have to tell you, I'm not much of a card player. I enjoy talking and socializing too much. I might just as well give my $20 to the other players and sit down to drink. LOL! I have a feeling that Cody is going to make me practice much more than I ever thought. We have played 4 times already since Friday night. When we have down time in the room that is what he wants to do.

We are on a waiting list for a WNBA game today. It is the woman's pro basketball team here in New York. If we don't get to go to that I will ask Cody what he wants to do. Who knows, we may end up over at Central Park again today. We are going to try and enjoy this day as much as possible. I am not looking forward to tomorrow. Diane tried to described the hell that Cody goes through to me but I want to experience it for myself before I try to write about it. She says that Monday's are known to be the worst day but the second week in general should be easier on Cody. I have to think that having a week under his belt helps him understand what to expect also. I pray his week goes easier than last. I will write more this week. I'm not sure when but I will try to keep you posted.

Go Steelers!!!!!

Happy Birthday Cody!!!!!

On this day 6 years ago, we were blessed with a very special gift. Cody has changed our lives in so many ways. He has brought so much more meaning to my life I can't begin to explain. Something that many of you may not know but Cody is a vasectomy baby. That's right, he beat the odds. My money is on him to beat the odds again...

Cody, we all love you so much and hope you can have the best birthday possible. You will be home in 9 days. Hang in there buddy....

Another rough day...

I talked to Diane and she said Cody had another hard day. She said that he had the pain somewhat under control but he broke out in hives and his throat was very swollen too. She said that one of the doctors has talk to her the past couple days and is very pleased the way Cody is progressing. Meaning, since the day we first went up to New York to have the tumor on his liver evaluated he thinks Cody is doing extremely well. We'll take it!!!!

A little better day...

I spoke to Diane a little while ago. She said Cody had a better day but still was dealing with a lot of pain. Cody slept through the whole night last night. That was from 6pm to 8am. He has been pretty upset. He has not wanted to talk to me yet. I miss him and want to talk to him but have to wait until he is feeling better. I've been taking on the day to day stuff with Daniela and Justin. Dealing with getting them on and off the bus, then homework and dinner. I remember when this was a rough day. Now, I would take this any day. After talking to Diane this evening I think I'll head up to NY on Friday evening. That way I can have a good weekend with Cody and our Saturday won't be broken up waiting for me to arrive. Thanks for the well wishes and please continue to pray for Cody....

Pain....

I spoke to Diane about 6pm. She said that Cody had a very hard time. She said he was sleeping now from all the pain meds but they didn't help much for the pain. She said that was hurting the whole time and she doesn't know how he is going to handle it tomorrow. The nurse told her that the first time is usually the worst for the kids. Diane also told me that the pain meds made Cody break out in hives and he got itchy all over. The poor kid is in for 9 more days of hell this trip. I hope and pray it gets easier for him.

I'll post more as I get it.

Say a prayer for our boy.....

Heading to New York....

Diane finished her packing last night for the big trip. She and Cody are heading up by train early this afternoon. A good family friend Dee Dee is going up with her for support through the first week of treatment. I think she will need it too.

We took the kids to Chucky Cheese for Cody's 6th birthday yesterday. It was just our family that attended. He knocked two big chunks of skin from the top of his head. He was crawling through the tunnels and raised up too fast hitting his head. I hope his hair grows back soon. His head can't take much more of this.

I'll update this week when I hear from Diane on how he is handling the new treatment.

Go Steelers!!!!!

First Day School

The second time... Just a couple pictures from yesterday....

Beach Slideshow

Where do I begin?

Our "08" vacation is in the books. Relaxing yet stressful is how I can sum it up. Saturday morning we got up and had to get the house cleaned by 10. We turned the keys in and headed to the beach for one last plunge. The kids loved all the things that were available to us while we were there. But, I think they would have been just as happy going to the beach everyday. I will be uploading pictures and a video sometime today.

Now for our upcoming schedule. Since the change in protocol we now will be taking Cody up to NY for two weeks a month. Diane will be going up the first week and I'll be going up the second. At first glance this was very unsettling because of the time that Diane and I have to take off from work. We both are blessed with jobs that permit us to work remotely when we can. One great things that will be happening this week is that the kids are going back to school. Oh, and did I mention that Cody will be going back to school also? He will be doing kindergarten again. Although his math skills are better than most 2nd graders, his speech and word pronunciation are lagging. He truly needs this. Although I think it will be a very hard transition for him again. His temper is an issue so we know that we will be going in for many parent-teacher meetings. We will take it! The fact that school is starting for all the kids will help Diane and I get back on a better work schedule. Ya!!!!

On a fun note:
Many of you who know me from Runners World know that I have more than my share of funny stories. Well I have another from this vacation that ranks right up there with the best. Friday we took the kids on a Pirate ship that was very much like the one that we went on in Baltimore harbor this past spring. They sing songs, find treasures and fight bad pirates on the trip and the kids love it. Well, somehow I got shanghaied into performing a crucial task on this trip. During the voyage the kids have to find a treasure map to help them "find the treasure." Well, at this point the kids are told to close their eyes and start chanting a "make the map appear" song. This is where I come in... LOL.. While all the kids have their eyes closed and are singing their little hearts out the captain pokes me with the rolled up canvas treasure map and says "throw it ........." I was caught completely off guard.... I look at him and ask "throw it where?" He gestures with his hand in the direction of the side of the boat. Diane says something to me but in the momentary panic state that I was in I threw the map over the side of the boat. Well you guessed it, that is not where the captain wanted me to trow the map. The captain stopped the boat and the crew tried very hard to scoop the map up but it sank to the bottom of the bay like a rock. Can you say embarassed? I spent the rest of the trip as the punch line of all the jokes and the kids had to use a 'Florida' map on the back of a crew members T-shirt. Diane and I started laughing multiple times on the way home about how stupid I was.. I have to admit it was not one of my best moments. The captain and crew did say that it gave them something to remember about this 08 season.