Wednesday, April 30, 2008

4 runs in 7 days....

Well folks I'm back on the horse again. I ran a couple of days last week and ran twice this week so far. It's getting easier each day. Any runner will tell you that the first couple of weeks or running are the worst. At least it's that way for me. Once the lungs get the idea that you are not trying to kill yourself they settle down. I've missed running. I've missed the way it made me feel about myself. Hopefully I can stick with it. It really takes dedication. There is a great commercial out now. I think it is from Nike. It says, "running knows when you sleep in." Etc..... Running knows....

Cody is still doing pretty good. I will take him to clinic tomorrow after he gets his radiation treatments. They will check his blood and I would not be surprised if he needs blood or platelets or both.

How about those Pittsburgh Penguins!!!!! They are rolling for sure... Some of you may know that I am a Pittsburgh boy all the way... Go Pens!!!!

Monday, April 28, 2008

Day by day we march along....

Cody continues push ahead and do all he can do to battle the beast. He is getting his radiation treatments everyday and trying to keep up his spirits. Tonight is the first in quite some time that his temper has got the best of him. I tried to get him to eat and he made it clear we were not going to force our will on him. I guess he is starting to feel down from the chemo. Now we will have to walk the fine line.

Thanks again to all of you who have donated to both BOP and Relay for Life. Every penny helps...

Now, on another note... If I may get on my soap box. I know that many of you out there are football fans. Some of you may have watched the NFL draft that took place over the weekend. Well, in the 7th round I guess things were getting slow and ESPN had to try and liven things up a bit only the way ESPN can. At pick #218 the Detroit Lions selected Galeb Campbell of Army. Let me say right off the bat that I am very happy for the young man and I wish him nothing but the best. Now this is my point of view on this subject and some of you may not agree with my point of view but this is my blog so it gives me the stage to speak my mind. ESPN created such a spectacle over the Lions selection that it was hard for me to stomach. They went on and on about "how they should be saluting Mr. Campbell and the Lions for selecting him." They thanked him for his service to his country and how proud they were of him. Now again I will say, "I don't blame this young man." He is getting a chance of a life time and he deserves it all. But I do blame the ESPN anchors for going way overboard. I'm not sure but I don't think any of them are veterans. If they are, "shame on them!" Here is why I say this. This young man, "Galeb Campbell" is a student who happens to go to the Army Academy. As far as I am concerned he is no different than any other Division I or II student athlete that got a his tuition paid for by the school. Some of things that does set Mr. Campbell apart from the non military student athletes are as follows:
1. He was able to collect a pay check while going to school without being fined by the NCAA.
2. He had to keep his hair cut in a neat and tidy manner while attending school.
3. And up until this year he would have had to full fill his contract with the military before he
play professional sports.

Now what has my shorts in a bunch is this. If Mr. Campbell goes to the NFL and makes the cut and becomes part of the team then I say "congratulation's." But please don't go telling him "thank you for serving his country." He has done nothing of the sort. He went to school and was paid to do it. Nothing more, nothing less. I'm not sure what is required of him from the Army at this point. I think his is the first athlete to do this. I believe I heard the announcers mention that he will have to do recruiting duty at the local Army recruiting office. I know what his fellow class mates will be doing, they will be in Baghdad or Afghanistan. I salute those people. They are the ones I am proud of. If the ESPN announcers wanted to thank a veteran athlete they should start with those young folks or the likes of Roger Staubach, David Robertson or Rocky Bleier. I'm sure there are many more that could be mentioned but those 3 came to mind first. They are service veterans who full filled their obligation to their country and then played professional sports.

Do you think a service academy student would be praised as much if he or she were allowed to go to work for IBM, Microsoft, Children's Hospital or any other big corporation as soon as they finished school and be permitted to get out of their contract? "I think not."

Good luck Mr. Campbell and God Bless your teammates and fellow cadets that are heading to a less favorable destination...

Friday, April 25, 2008

Hair Cut For Hope...

Great spirits...

By far this has been Cody's best hospital stay ever. He has done so well and not let his anger get the best of him. The chemo this time is not as hard so that definitely has something to do with it. After radiation tomorrow morning Diane will bring him home. I just hope this continues....

Today is my anniversary. It was this day 11 years ago that we were married in Grenada. "Diane, I know I haven't been the best of husbands these past years, so thank you for putting up with me." "Even though I don't always show it, I do love you."

It's been a busy night. I went to bed thousands of dollars ahead of my closest fundraiser on the Relay for Life site. Now I'm 1 thousand behind. It looks as though they made large offline deposits yesterday. Oh well, I'm very proud of what has been accomplished. The Relay for Life has a great setup.

We got some great pictures yesterday from the hair cut. I will post them tonight when I get home. "Thank you to all of you who contributed to the cause.

God Bless you all....

Thursday, April 24, 2008

Good Day...

Yesterday was Cody's 3rd of 5 chemo days. He really was in great spirits all day. He went to bed at 11:00 on Tuesday night and he got up at 10:30 yesterday morning. We went down for his pre radiation session. That is where they put him in the CT scan machine and place marks on his abdominal area that will make it easy to line up his body for the radiation. This morning will be his first then he will go Friday and Saturday mornings. He will have Sunday off then he will go 6 days next week starting Monday. Then a few days the following week. One good thing is he has one more day of chemo after today. Also the radiation is in and out for the most part. He will be discharged Saturday morning.

You may have noticed in his latest pictures that his hair is coming back in. Well, that is going to fall out again. Hopefully this will be his last chemo.

Today is haircut day. I'm taking my hair shears in to cut Ernest's hair and then shave his head. I'd like to thank Ernest for his participation in our fund raising efforts. I'd also like to thank him for helping me kick off my new career as a beautician. Hopefully I don't draw too much blood. :)

I did get a chance to get in a 35 minute run yesterday. I'm not as fast or light as I was in November but I did OK. I'm just a little sore this morning.

If you haven't given to BOP or the Relay yet it isn't too late. Please give.

God Bless you all for caring and praying for my son.

Tuesday, April 22, 2008

2nd day of chemo...

They just finished giving Cody the second day of chemo. He will be getting 3 days of radiation and one day off. Then he will have to come in next week and a couple days the following week. I hope all continues to go well. He has been in great spirits all day. Diane mentioned to me that Cody continues to have low white blood cell counts. This is even before his chemo started. His numbers have been dropping ever so slightly for weeks. We hope this is something that his body will work through but it could be a sign of another type of cancer. Unfortunately the drugs they use to fight one cancer often cause other cancers to start. Please pray that it is not going to be the case....

The fast paced fund raising has continued today. We have scheduled the head shaving for 1pm on Thursday. I will post some of the pictures when I can. I also ordered more medium bracelet today. Cody's elementary school is having a Spring fair in early May and they are going to have a Cody's Crew stand to sell the bracelets. I'd like to thank Flo King for all her efforts. She has done a tremendous job selling the bracelets.

Monday, April 21, 2008

A long day...

Today was one of those days. Cody and I showed up at the clinic around 11:30 am. We had to check in and he needed to give a little blood for labs. He was suppose to check in this morning so they could order the chemo to be mixed. Well as of 5:30 pm they still didn't have a room for Cody and he had not started chemo or radiation. I know that things just happen this way sometimes but it makes me feel like screaming. Now we are not even sure if he will start his radiation this week. All this just lets the spots continue to grow........ Hopefully tomorrow goes better!

On the fund raising front, I mentioned a couple of weeks ago that a friend of mine was going to let me shave his head if I could raise $5000 by this Wednesday. Well, he best be finding a good razor because I reached that total today. With some great donations from some friends we did it. I was also issued a challenge from a work associate that if I shave one of my legs he would donate $100 dollars. I'm going to go one leg better. I will shave both of my legs and post the pictures on the Runners World Forum if I get a $1000 donation. I know what you are thinking, "has he no shame?" Well, when it comes to raising money, no.....

Please don't stop donating. BOP and Relay for Life are in need of funds that can help find a cure for cancer...

Sunday, April 20, 2008

A pretty good weekend....

The family spent the weekend up in Front Royal. We went to the Special Love family weekend. Some of you may remember that Daniela and Justin went to camp a couple of weeks ago. This is put on by the same organization and at the same location. We really had a great time and had the chance to fellowship with people who are going through or have gone through what we are. We hope to go again in June. Cody starts chemo and possibly radiation this week. Georgetown needs to repeat some of the scans that were done at Memorial Sloan Kettering before they can start the radiation. We are just looking forward to getting through this part of the treatment.

Here are some pictures from the weekend and a couple from Justin's 10 year birthday. Diane came up with the idea of taking a few of his friends down to ESPN zone in a limo. I have to thank everyone who made it possible. We would like to thank Jen from Georgetown for hooking us up with game cards for ESPN zone. We would also like to thank the very special people from Chariots For Hire. We were put in contact with them through the hospital. They provided the limo at a very special price so we could do this.




Cody and Peanut "Eric Jr."



Daniela and her new friend Daniela.




Daniela doing some craft work.



Cody and a new friend.



Justin moved up to Webelo 2nd year.



I tried my hand at a little nature photography.



This is the view from the 4H camp where we stayed this weekend. I'd love to live up there.



Here is the Jackson family. Their daughter had neuroblastoma also and is being treated at Georgetown. She is NED "no evidence of disease" at this time. That is where all parents of children with neuroblastoma want to be. They are good people and we look forward to spending more time with them in the future.



Here is the limo that picked the kids up. They thought they were movie stars. :)



Justin had a great time.



Cody may be hitting the pro bowler's tour in the future.

Thursday, April 17, 2008

What we know so far....

Cody will be starting radiation therapy and chemo therapy on Monday. There was a meeting of 4 great doctors at Georgetown today that were discussing Cody's treatment. Although they are not really sure that the new spots are cancer, they are relatively sure one of them is. The area in the liver that is showing up is believed to be new tissue growing because of the surgery. So, Cody will get two weeks of radiation and one week of chemo. Hopefully he will start the antibody treatment after that. This road is very hard and bumpy.. I wish I were as brave as him. To be honest with you all, I'm starting to get in a bit of a rut again. This is why I try to focus on things like fund raising and drawing.

Speaking of fund raising I mailed a check to BOP today for $1000.00 and two checks totaling $40. All of this was raised from Cody's Crew bracelets. I still have some on hand and I'm not sure if I will be ordering anymore in the near future. Please let me know if you are interested. As this slows down I'm going to get ready to start the soda drive. You will hear more in the days to come. We have to get through the next couple of weeks first. Also I have started some drawings for Xmas cards to be sold on BOP's site for the up coming holiday season. I like drawing these because I can knock out one each time I sit down and draw.

Once again I'd like to remind you that if you have not stopped by the BOP or Relay for Life site please do so. You can make a difference in some child's life. Just to let you know, thanks to all of you I'm currently the top fund raiser in Prince William County for the Relay and my company is second. We are second to a team that has 5 times the number of members. Great job everyone. We thank you very much....

God Bless You All!!

Wednesday, April 16, 2008

Update...

Tomorrow Diane will be taking Cody into Georgetown. She will be talking with the Radiologist. The way it is looking now, Cody will be getting more chemo and radiation before he can start the antibody treatments. The spots on the liver and adrenal gland that showed up on the MIBG in Georgetown a week ago have showed up on the PET scan in New York. They want to start the antibody treatment with as close to a clean slate as possible. So the way it looks now, Cody will start treatment again next Monday. Here we go again. He really looks good now despite loosing so much weight. Oh how I pray to God that Cody makes it through all of this. It is so hard to keep putting him through this.

God Bless You Cody!

Tuesday, April 15, 2008

Hey Everyone...

We did get a little info yesterday from the tests but I don't want to post anything until the doctor has a chance to review Cody's case with the other doctors. When I get a better idea of what is in store for us I will let you know.

Fund raising is going pretty well right now. Please forward my links to friends and family and get the word out. I thank all of you who have been so loyal and helping out. "Band of Parents" , "Relay for Life"

I mentioned my new idea that was given to me by Ken Davis who is one of my work friends. I believe the new idea is going to be a very big hit. Without getting into it too deep here it is. There a soda company that will "for a price" put you picture and phrase on the flavored soda of your choice. Since Cody's favorite soda is cream soda so I will be ordering a couple of cases with Cody's pirate picture on the front and "Cody's Crew Cream Soda" on the back. This is a little pricey so I haven't decided if I'm going to auction it off by the bottle or the 6 pack. I'll be working on that as time permits.

Please, while saying a prayer for Cody, include a prayer for my family. This whole process is beginning to take it's toll on us all. Nobody knows what the future holds for us but I just hope to keep things together as we go through these tough times. Thank you all for your prayers and continued support.

Saturday, April 12, 2008

New York state of mind.....

Here are the pictures I promised.




Cody made some new friends this trip. All these boys have neuroblastoma.



They just want to be kids... No matter what, you can't take that away from them.



Today is Justin's birthday. He is 10. "Happy Birthday Justin."



This is Cody's new best friend, "Brodie."



We went to the New York Firemen's Museum on Thursday night. Cody loved it..



Do you think he liked this place?



The firefighters love Cody too. He looked so serious.



Just loving life... :D

Friday, April 11, 2008

What a day....

Cody and I were out the door by 6:30 this morning. We had to be at clinic by 7:00. Cody did pretty good this morning. He had a CT scan at 8:20 so he had to take contrast 1 hour before. That went very well and he actually fell asleep on during the procedure. The rest of the day was screwed up for the most part. Cody held up very well though. His bone marrow was at 11:30 and he had a PET scan at 4pm. Do you know what that means? It meant that he couldn't eat or drink anything except water until 5pm. It was not easy. I made myself hold out until he could also have something. But through some rough times we made it. We had to cancel our 5pm flight so we decided to stay the night and ride the train home tomorrow. We are going to catch the noon train and get into DC around 3pm.

We won't know the results until next week. I'll be sure to let everyone know when we get the results.

Last night we went on a trip to the NYC Fireman's Museum. Cody had a great time and I got some great pictures. He also made some new friends at the Ronald McDonald House. I'll be sure to post them this weekend. Spending so much time at the hospital and RMH it really puts things into perspective for me. For as bad as I think we have it sometimes it's easy to see that there are people who have it worse. I watch these kids and it's hard not to get a heavy heart.

I'll post more tomorrow...

God Bless!!!

Visit my Relay page please!!!!

Wednesday, April 9, 2008

Good news and bad news

Cody had a long morning with his MRI and MIBG. We got in to do the MRI pretty quick and from what we understand it was all clear. The MIBG was not so good. Diane said that they have found two new spots. One in his liver and one in his adrenal gland. This complicates thing again. We are flying out early tomorrow morning. Then, we have an appointment Friday morning for his bone marrow and they are going to do a CT scan now too. After that we don't know what is going to happen. Oh what a road this is. It wears you down and makes you old before your time. When I find out more, I'll let you all know...

Please stop by my "Relay for Life" page....

Tuesday, April 8, 2008

So far so good....

Diane took Cody in today for his bone scan. She said that it turned out well. His blood numbers are starting to get better after being off of the antibiotic for a few days. I have to take him in tomorrow by 8:30 am for his MIBG and MRI. Then Cody and I fly out on Thursday morning for NY. He will have his bone marrow Friday morning. We are not staying the weekend as previously thought. We will come home Friday and wait for the results of all the tests. If everything comes back clean of active cancer he will begin the antibody treatments the week of April 21st. Can you see how this drives me crazy? Just when you think you know what is going on, it all changes...

First off, I don't want any of you to stop visiting my blog. It is my way to communicate with many people who care about Cody and the end of neuroblastoma. I know that it seems like I am always asking for money but the truth is, I only have two pet charities. My first is Cody's Crew and BOP. The second is "Relay for Life" which is gearing up right now. Last year many of you remember that I ran a one man marathon at the Relay to raise money. In two weeks time I was the high fund raiser for my company. I want to top that this year with an early start. Here is a picture of yours truly that was in the local news paper.



This year, unfortunately I'm in no shape to run a marathon but that won't stop me from running part of it. If you can help it would be greatly appreciated, but please don't feel obligated. Here is a link to my Relay for Life page.

I also have a great idea that I will reveal in a few days. It is something very special and I think it will be a hit.

I will let you all know what the results of tomorrow's test as soon as we hear.

Thanks for praying and keeping Cody in your thoughts...

Sunday, April 6, 2008

Pretty good weekend...

We spent the weekend hanging close to home. Saturday was a very nice day so I decided to install a new back door on the house. It took Saturday and Sunday to totally finish it but I'm glad I did it.

This is going to be a very busy week. Procedures on Tuesday and Wednesday and then flight up to New York on Thursday for bone marrow on Friday.

I'd like to give a shout out to Grandpa John who is a member of Cody's Crew. John has taken on the battle with neuroblastoma in his own way. John is a runner and has decided to raise money and dedicate his running to finding a cure to neuroblastoma. What makes this even more special is that John is doing this out of the kindness of his heart. He has no family member with the disease but has been moved by Cody and the BOP. On behalf of all the parents and children who are battling this evil beast, "Thank you!" Here is John's new blog. Stop in and say "hello."

Friday, April 4, 2008

Correction...

Diane set me strait when I got home today. She clarified that if Cody's tests next week turn out negative he will not have to get chemo before the antibody treatments. But that is only if he gets started within 90 days of his last chemo.

Thursday, April 3, 2008

A good day

Well Cody's CT scan came back negative today. He had a head, neck and chest scan and it turned up no visible signs of cancer. The doctor believes that the bump on his collar bone is bone or calcium. He will have the full gamut of tests next week also.

Cody has showed a little sign that his appetite is going to come back now. Towards the end of the day he started to eat a little more. He weighted 42 pounds before his surgery and now weights 38 pounds. We need him to have a good weekend because he will be getting chemo next week so that won't help for sure.

For those of you who live in the Washington D.C. area there is going to be a concert in Centreville, VA on April 25th. The concert is titled "Rock For A Cure." It features a band named the "Fabulous Hubcaps". Here is the link to purchase tickets. This is a great way to help this great cause and have a great evening out to boot. Go to their site and you can listen to a sampling of their music.

God Bless you all!!!!

Wednesday, April 2, 2008

Gutt wrenching feeling...

People have asked me time and time again, "how do you and Diane do it?" My usual answer is, "we just do." Every once and a while I ask myself the same question. Today was one of those days. Just when we feel like we are moving in the right direction, we get kicked in the teeth again. We had a pretty good day yesterday. The news overall was pretty good. The ultrasound came back good and the blood numbers changed but the doctor was not alarmed because she said that the antibiotics can cause such changes. Last night we administered the last batch of meds. We set the alarm for 1am to get up and unhook the meds. When I get up to turn the light on Diane mentions to me that Cody has a new bump on his collar bone. Being half asleep I told Diane that it wasn't the time to tell me this and I totally forgot about it today. Then she called me at work. She said that they wanted to take Cody in to get a CT scan today but they couldn't fit him in until tomorrow. I just felt like I was kicked in the stomach. Cody just can't get a break. Every time he gets through one thing something else comes up. The good thing is that the lump feels hard like it is calcium or bone deposit. We just won't know for sure until they get a look at it. So, this means we have to go in for 8am and wait until they can fit us in.
Then, next week he has to get MIBG, MRI and bone scan. Then they want him up in New York next Friday for a bone marrow test. We will stay the weekend and start the antibody infusions the next week. Just when we think we will have a few weeks of family time it all starts again. That is one of the hardest things about of all of this. This all just seems like an evil, cruel joke that was never funny or fair. I just keep asking myself "why?"

Here are few pictures for last weekend.





Tuesday, April 1, 2008

Long Day..

Well, today started early with an 8am ultrasound. Cody did real well and actually fell asleep on the table while the tech was doing his job. After that we headed to the clinic for his immune booster and his breathing treatment. His blood numbers came back good and the ultrasound was very good. So good in fact the surgeon gave his OK to begin treatment. So, that means Cody will get a chemo treatment next week. This chemo will not be as strong as his previous chemo treatments. The main purpose of this chemo will be to suppress his immune system so it will not fight the antibodies he will be getting. The antibodies will be administered up at MSK in New York.

Cody's Crew continues to roll. The Crew is doing so well that I had to place a second order to the bracelet manufacturer. I thank you all very much. I also want to thank those of you have made direct donations to BOP in Cody's name... It warms our hearts to see so many people that care.