Finished......

Well Cody had his last chemo of this round. We hope it is the last but that is something only God knows. He has had a great couple days. No visible side affects, so now we start trying to bring his system back as quickly as possible. "What a screwed up system!" Let me kick the shit out of you so I can make you feel better.... I pray none of you ever have to watch your child or loved one go through this.....

Cody's girl friend Lori arrived yesterday and it is like they never missed a beat. Lori used to work at Georgetown when Cody went through the worst of the worst. She was there when he almost left us because of complications from the chemo. She was there when he went through his stem cell transplant and basically had to learn to walk again. Her actual job title is "Art Therapist." Art therapists are the proverbial "unsung hero." Although I don't know for a fact, I have a guess that they as a whole are grossly under paid. They come and spend time with the kids when they are at their lowest. They relieve exhausted parents who are doing marathon like hours trying to stay with their children during this nightmare called cancer treatment. They develop a bond with children who may never have a chance to live life beyond the walls of a hospital. They are trained to let the child have some control and express themselves through art. They play games, provide toys, provide an understanding shoulder for the child and the parents to cry with and cry on. Lori has become a member of our family. She has seen us at worst. She has been with us when we were at rock bottom. For Diane and me she is like a sister, daughter and a friend all rolled into one. To Cody, she's his girlfriend. Lori, we thank you for being there for us. We love you.. I would also like to say "thank you" to Jenny and Linda. They both have taken the torch from Lori and are working their magic with us now. To all the Art Therapists out there I like to say "thank you!"

Here is a picture of Cody and Lori.



Cody called me at work on Wednesday to tell me that he blew a bubble for the first time. He was so proud of himself. It's the little things people. Grab your child, look deep into their eyes and tell them that you love them. None of us know how long they will be with us. We are blessed to live with angels. They are the angels who live with us.

Mom,
Lori is with us until Tuesday. We are going back to Baltimore tomorrow. We hope it is a low key day. It makes me feel good to know that you are proud of me. I speak from the heart and try not to sugar coat what I say. Here is a picture of Daniela with her guitar. She was so happy she almost cried...

Chemo day 3

As you all know, the first day went very bad. Cody was sick, sick, sick. Yesterday he did not throw up once. He did sleep most of the day and did not eat much at all. Today is a whole new day. He is back to his old self and running around the house. He has actually eaten pretty good today. I hope the next two days follow the same pattern.

Our very good friend Lori is coming in from Chicago tomorrow. She is Cody's girlfriend. If you have watched the Cody video you will see her hanging a Christmas ornament with him.

I have to give Detroit props. They are giving the Pens more than they can handle. If Pittsburgh doesn't win tonight they will be on life support.

A very happy belated Birthday to my daughter Daniela. She turned 8 yesterday.
A very happy Birthday to my wife Diane. I won't tell you how old she is...
Diane, I love you...

Day one of next round...

Cody started his next round of chemo today. This is the first time he has done chemo as outpatient. It is also the first time that it has really made him sick. He was trowing up until 4pm when he took a nap. I hope his whole week isn't like this. He just started putting on a couple pounds. This par for the coarse as they say..

Here are some pictures from the pirate ship on Saturday. We had a great time until Cody had a melt down at the Baltimore Aquarium. We had to leave after that...

Some facts...

I'm not sure if this the info you were looking for Liz? This is off the BOP website.

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.

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% .

Cancer accounts for the greatest number of disease
deaths of children in the United States and kills more
children per year than cystic fibrosis, muscular
dystrophy, asthma and AIDS combined.

Each school day, 46
children are diagnosed with
cancer.

Although the 5 year survival
rate is steadily increasing, one
quarter of children will die 5
years from the time of diagnosis.

Chemo starts Monday..

Diane took Cody to the clinic today. His numbers have risen enough to start chemo. She will be taking him in and up to the floor on Monday since it is a holiday. He should be finished on Friday. After his body recovers from that chemo he should be able to get the port... He is stoked about that.

Saturday morning we are leaving early and going to Baltimore. We are going to spend the day on a pirate ship. It sails out of Fells Point which right in Baltimore harbor. Need I say, "Cody is very excited about it. I will take plenty of pictures.

I did 5 miles this evening and I am back to my 8:30 average again. I'm feeling pretty good and I will start to bump the miles up very slowly. One thing I know for sure is that going too far too fast will almost guarantee an injury, especially for an old fart like me...

Getting my legs back...

I've been able to fit running back into my schedule as of late. I ran 6 miles on Sunday and it felt pretty good. Since gas prices are just ridiculous I decided to ride my bike to the store for some odds and ends that I needed for dinner. That was about a 8 mile trip there and back. Yesterday evening I did another 5 miles and it finally feels like my legs are coming back. My breathing is not as labored on the hills either. Now if I can curb my appetite just a bit. I know I'm consuming more calories than I should. One step at a time..

Nothing has changed with Cody. We are waiting to start chemo on Monday we hope.

Quick update..

I took Cody in to clinic yesterday in hopes of beginning his next round of chemo. Although his platelets did rise some it was not enough to start this week. The doctor said that she was not worried and that she expects to begin next week. Diane will take him in on Thursday and we will start him on GCSF over the weekend. This will boost his Absolute Neutrophil Count (ANC) level and get him ready for the chemo. Neutrophil are what protects him from germs and getting sick. When I talk about him not being around other kids after chemo, that is when his ANC numbers are very low.

Cody has also made it very clear that he wants a port instead of his tubes. He wants to lay in the bath tube so bad it's driving him crazy. Dr. Abu-Gosh said that he can get one after he recovers from this next chemo. She doesn't want him going through surgery until he recovers from the chemo.

Well it looks like Pittsburgh will play Detroit for the Stanley Cup. It should be a great series. They are the two best teams in hockey right now so it will be great.

HAPPY BIRTHDAY MOM!!!!



I love you!!!

Penguins Win!!!!

And boy did they... First off let me apologize to my Philly friends for gloating. It's been a long time coming for the Penguins return to the Stanley Cup. Here is a little picture I found on the web, courtesy of ThePensblog.

The clock is ticking...

My mother commented about he clock on my blog. To me it just seems appropriate. It represents the time that is ticking away as the great doctors at MSK desperately search for a cure for neuroblastoma. Not that any of you need to be reminded but if you are up to it please visit the BOP website. It has been updated and it's a reality check. Please take the time to check in there.

"Bond by Hope"

Very nice day..

We had a nice day outside today. We did a lot of work around the house. BigMan and his wife showed up in the afternoon and we were able to spend a few minutes together. I had a wonderful time and they were able to meet Cody. Unfortunately my wife was out running around at some stores and missed them by 2 minutes. Here are a few pictures..

Try again Monday...

Cody went back on pre-meds yesterday in hopes that we will start the chemo Monday. The meds are for anti diarrhea. One of the chemo causes that. Last round he was very lucky and didn't deal with that much. We will start them if his platelets have come up more. I'm not sure how long we will wait for them to rise but I know at some point we will have to move on. His platelets are not coming back quickly because his bone marrow is shot. All the chemo that his has gotten over the past months has taken it's toll.

We were getting ready to go out for dinner last night when we had a little episode. Justin was waiting for a friend to come get him so he could spend the night over at the friend's house. Cody didn't want Justin to go and was play boxing with him. He was really just laughing and playing around. Justin didn't want to be bothered and had to go get his things ready for the night. As he was trying to get away from Cody he moved and brushed Cody aside. Cody fell with his back to the door and scratched his back on the hinge of the door. Well that did it. He was in pain and pissed off. He was screaming at Justin and crying cause his back was hurting. He told me that we shouldn't let Justin go because he hurt him. Then while Diane was getting Justin out the door with his friend and his mother, Cody went upstairs. I was unaware at the time but he went to his brother's room and start knocking down all of Justin's glow in the dark planets that hang from the ceiling. His temper got the worst of him again. Diane and I will have to talk about how we will deal with this behavior.

I'm expecting a visit from a friend from the Runners World forum that I frequent. He lives in Jacksonville FL and is up here for a race tomorrow. He and his wife are going to try to stop by. When I went down to Kings Bay GA last August for work I drove down to meet him in Jacksonville. I'll post some pictures later.

Platelets the same..

I took Cody in this morning to have his labs checked. He didn't start chemo this week because his platelets were too low. Well they haven't changed. Diane and I are waiting to hear from Dr. Abu-Gosh so we can find out the next step. Cody kept his anger in check yesterday and so far today. Right now as I type, he is bouncing off the walls.

We are expecting rain all weekend. I was able to get out and cut the grass this afternoon after Justin got home. Even though we have got more rain than we need this month I still love it. We were at the other end of the spectrum last year so I will take it.

Stress...

Yesterday was a fairly slow day at the Johnson house. Cody slept in until 11 which is understandable after weeks of getting up early for his trips to Georgetown for radiation treatments. He continues to amaze us with his energy and spunk.
While watching him play I just can't help but tell myself that he just wants to be a kid. Take away the meds, the tubes, the needles, the trips to the hospital and give him school, his friends and the chance to just be a kid.

99.5 percent of the time Cody is an extremely loving and caring child. He is an angel... But,,, for the 5th day in a row he has been triggered into a rage that cannot be stopped. It gets so bad that I have to physically restrain him so he does not hurt himself or others. He screams at the top of his lungs. He starts destroying his toys or anything he can get his hands on. Lamps, glassware or any breakable items are not safe. He has no problem hitting his siblings, Diane or myself. This can all be set off by something as little as being told to settle down or not winning a video game. This session usually lasts from an half to 2 hours. After he settles down he usually comes and apologizes to Diane and I. This causes such stress around the house. His sister Daniela is usually brought to tears because she thinks I am hurting Cody or just doesn't understand what is going on.
Cody was going through this same thing while in the hospital during chemo treatments. When given certain drugs for pain or just side effect prevention he would occasionally have these. We have talked with the doctor about this and it was decided that we would wait until he is off many of the other meds before trying to deal this issue. I totally understand why my son is going through this. Hell,,, I would probably do the same thing if I were going through what he has. I wish I could take all of this away from him. He really never complains about all he goes through but in the back of his mind he has to be asking himself "why?"...


"Bound by Hope"

No chemo today..

They didn't start chemo today because Cody's platelets are too low. I will take him in on Thursday so they can recheck them. The scan this morning was not very conclusive. They think it looks like a blood vessel but they are not sure yet. I will have to talk with Diane a little more this evening to make sure.

I forgot...

Cody is starting his chemo this morning. It will be outpatient so hopefully the days won't be too long. He is also getting a scan this morning to hopefully identify the new spot on his liver. They are hoping that it is a new growth area.. Cross your fingers on that one... I will keep you posted..

What a day..

The relay is over... The weather was not the best but it could've been much worse. I'm disappointed in many of those who were suppose to participate. The whole purpose of the Relay for Life and the fact that it goes all night is to make the point that cancer never sleeps. Many people left early and others left when it started raining. I guess since they raised money it didn't matter to them that they left early. I am proud to say that the Progeny folks stayed until the end. I myself started walking at 3:30 am and stopped at 9:30. The whole Progeny crew was there until the end. I am so proud to be associated with them. Lori, Susan, Glen, Phil, Marie, Rachel, Shirley and Heath did a great job. I may try to recruit them for the fight against the beast. I personally didn't finish first but I'm proud of what we accomplished. I would like to thank all of you who contributed to the Relay. I've decided that now my focus will be totally on Band Of Parents. It is time that my efforts go directly to Cody. In no way am I trying to make it seem less of need for research in other areas but I hope that you all can understand what I am saying.

Unfortunately the pictures did not turn out very well. Only a couple turned out worth posting. Here they are.

One more day..

Cody has one more day of radiation treatments, for now. He will go in Monday to start the second round of chemo. He handled the first round pretty well and we pray that he does it again. He has been so energetic and happy that you just can't tell that he is in the middle of all this. So far it looks like his hair isn't going to fall out from this chemo either. He will also be getting a special CTscan to look at a spot on his liver. Everyone is hoping that the spot is just new growth from the liver surgery. That is a special prayer request for ya....



Friday is Relay for Life! If you live near the Washington DC metro area please show up and cheer for our little man. I want the loudest cheer for Cody. It usually is anyway but this is more special. There is an urgency now more than ever. Also, if you have not taken the time to visit my Relay for Life page, please do so. We are making a push for young lives here...

God Bless....

Good start to the week...

We expected that Cody would need blood and platelets for sure by now. Much to my surprise he seems to be holding his own on both. None was needed today. He has 4 more days of radiation and then he will start his next round of chemo, probably next week.

Today I discussed the option of a port with the doctor. For those of you who have had the pleasure of not knowing anyone with cancer, you may not know what a port is. Well, let me first refresh your memory on what Cody presently has. He has a double lumen. This a double tube that is inserted in to one of his main arteries in his chest and sticks out for easy access. This is where they administer drugs during his treatments. The disadvantage of Cody's setup is that you have to be very careful about getting water, dirt and germs close to the opening in his chest. Infections are always a problem. Every 24 hours we have to flush them or they will clog and we would have to go to the hospital to open them. With the lumen Cody can't swim or take shower or bath. Summer is a very hard time of year because he will want to be out playing and he will get sweaty. Sweat will get under his dressing and cause problems. That happened the first time Cody was being treated. He had to have his tube replaced. Cody is an extremely active boy so this is a big problem.

Most adults and older kids have ports instead. They are an access point that is under the skin. It is usually on the chest just below the collar bone. It doesn't have any of the problems associated with the double lumen. The only drawback is that Cody will have to get use to being stuck in that area. We will be able to put numbing cream on that location before he is injected. Here is a link that shows both.

I hope the doctor decides that it is OK.

The Relay for Life starts Friday evening and goes through Saturday noon. Cody and I will be doing the opening ceremony on Friday evening and then I will be running a few miles. I'm kinda excited about it.

Thank you for the continued prayers...

A Busy Few Days..

Sorry for not posting in a couple of days. I guess no news is good news right?

I was able to get another 5 mile run in this morning. It was great. Nice and cool, fresh air, what more could you want?

I had a busy day today. I rewired the electrical outlet on our back deck. The I ran over to my brother-in-law's new house to help cut up trees and clear the land. I will be over there tomorrow also. For as much as he and all our relatives and friends have done for us I could never repay them.

Cody has been doing very well the last few days. He is amazing. No treatments today or tomorrow so I'm loving it as much as he is. We will have radiation on Monday morning and maybe blood or platelets.

I have a picture from the Cody's Crew stand at the school yesterday. I'd like to thank Mrs. King , Mrs. Watts and all the others who helped man the stand. Mrs. Watts is one of Cody's kindergarten teachers. I will also post a picture of the BOP stand from the Kidsfest today.