Friday, November 28, 2008

Had pain today....

Cody did have pain today and had to get one rescue. We did get some information that we didn't know before today. Cody's HAMA numbers before this cycle were up in the 700's. The 800's are considered HAMA positive. So chances are very good that Cody will be HAMA positive on the next test. This means he will probably have to get some chemo to bring his HAMA numbers back down.

Thursday, November 27, 2008

Nice Day...

Here are a couple of pictures we took today. I hope you enjoy them

Attack of the giant Ronald!!!!

Here is Cody checking out Sponge Bob..

You want me to build you a fire with what?

A little family picture.

Best friends...

Happy Thanksgiving...

The Johnson family has alot to be thankful for, how about you?

We are all together here in New York. We will be heading down to a private viewing of the Macy's Day Parade. We will be in an office building that has a great view and will be serving breakfast for us. Later the are having a feast at the RMH. Last night we rode the Police bus down to where they have all the balloons ready to go for today's parade. The public was aloud down one side of the street and they had the other side blocked off. It was used as a private viewing area. It was crowded but not nearly as bad as the public side of the street. They really make the kids feel special when we are here in New York. The Ronald McDonald House staff and volunteers are great.

Yesterday Cody had no pain again. We will go in Friday for the last treatment of this cycle and then head home Saturday. He will have his blood drawn for the HAMA test in two weeks. We hope and pray it is not positive. You never know.

Thanks for reading and don't eat too much Turkey..... :)

Tuesday, November 25, 2008

Week 2 - Day 2

No pain.... No rescues.......

Not a good thing... We will wait and see what the rest of the week holds for us.

Pray for no HAMA please....

Late/Early Post

Sorry for not getting this up yesterday. Cody had commandeered my laptop to play Webkinz. Yesterday was good and kinda bad. Good in the sense that it was the easiest day Cody has had while on 3f8. It was kinda bad because other than a slightly elevated heart rate at times Cody seemed to have very little pain. By now you all know what that could mean. They did use Morphine on him yesterday instead of Dilaudid. Dilaudid is supposed to be many times stronger than Morphine and fewer side effects like itching. He seemed to do much better but that was with no rescues. It is very hard to try and control his pain and at the same time try and minimize his rage and anger issues. We shall see today.

Thanks for reading..

Sunday, November 23, 2008

Drop in to Kirk's place...

A good friend of my family and me has setup a great site. Please take a minute to check it out. He is running his 3rd marathon in Cody's name and raising money for BOP. Here is his link.

Thank you Kirk.

Love Ya Brother!Text Color

Saturday, November 22, 2008

Nice quiet ride to New York....

So as I make my way out of D.C. by train I fumble with my laptop trying to get comfortable. The drop down tray doesn’t work properly and the laptop leans hard to the right which would make it almost impossible to type. I’m in the quiet car this time. No loud talking or use of cell phones, this is just the place for me. It seems that every time I’ve ridden the train before I get close to someone who talks nonstop the whole way from D.C. to New York. So far I’m lucky enough to be sitting by myself. I must stink or something. :)

I really do enjoy the train much more than flying. You don’t have those stupid security lines. You know the ones that don’t allow you to have large containers of shampoo or toothpaste for fear that you would use them to blow the plane up. The lines that make you take your shoes off so you have to make sure you don’t have holes in you socks. In a train you can get up and walk around when you want. They have a bar car! Yes! Not that I spend much time drinking on the train but it is nice to have a beer when you want one. Sure the trip itself is longer but if you take away the security line, the two hour early rule and the fact that a flight almost never leaves on time it is almost as quick up to New York.

My eyes feel tired right now but I just can’t get comfortable enough to fall asleep. This gives me time to put some thoughts down in writing. Most of my blog entries come at the end of a very long day or in the morning before leaving for work or in this case before heading to the hospital with Cody.

Many times I catch myself reflecting about the person I am and where I’ve been in my lifetime. I’ve wasted so much of my life always wanting more. I wanted more money and more possessions. I always thought that if I had done things differently I would’ve achieved so much more. I still find myself feeling that way from time to time. But now I have more important things to worry about.

I often wonder what my children are going to think of me when they grow up. Despite the outward appearance that many of you may see I’m not always the perfect Dad. I feel I’m not as patient and loving with my children as I should be. I wish I were the loving, understanding and nurturing father that I see in others. I wish I were the kind of father that my kids would brag about. The kind of father that they could and would come and tell me anything that was troubling them. But that doesn’t seem to be the kind of father I am. I’m far too judgmental and quick to criticize instead of listening and lending a shoulder to cry on. I’m too impatient with my kids. I don’t think I allow them to be kids at times, always telling them “quit wrestling in there or sit down and be quite. I tell them to quit running around the house before you break something. That actually takes me back to my own childhood. I remember eating dinner in the kitchen with my 3 brothers and 3 sisters. My mother would eat in the living room so she could get some peace and quiet. I can hear her right now saying “quit laughing and joking around out there or I’m going to come out there and beat all of you with the wooden spoon.” That always seem to have the opposite effect that she wanted. It usually made me laugh when she said it and, well, you know what happened next. That was actually one of the good times I remember. LOL Getting hit with a wooden spoon, now that is good times. LOL OK, let me get back on track here. I don’t think I provide my kids with a good adult roll model. I cuss too much and yet I jump on them when I hear them repeating what I say. “And I wonder where Cody gets it from.” What will they tell their kids about me when I’m gone?

I look in the mirror and see an old man. Gray is taking over my beard. My hairline is migrating to the back of my neck. My George Atlas body has betrayed me. LMAO! My feet and ankles ache when I first get up out of bed in the morning. Where has my youth gone? Where has my life gone? It seems like only yesterday that I was envious of older guys because they seemed to have it all together and have so much stuff. Now I’m envious of guys in their 20’s and 30’s because they seem to have so much ahead of them. Will I ever be truly happy with what and who I am? What is happiness? Is it a place, a time in your life or just a state of mind? Are some people just destined to always want something more?

Please excuse me for my rambling. That’s why I started this blog for in the first place… :)

It’s Saturday morning and Diane and Cody are still in bed. I figured I would finish this post up and get it online. Diane said Cody didn’t have much pain at all yesterday. That is usually the case at the end of the week. I’m not sure what we have planned for this morning, I guess that is up to Cody. I will post when I have more info for you all, or if I have any ramblings that I can put down into words.

I have to add this little story. Last night we were lying on the bed together playing poker with Cody when he started to get this serious look on his face. He looked at me and said "Daddy I don't want to hurt your feelings, but, I'm going to marry Mommy. I think she is kinda pretty." He was very serious when he said it.

Thanks for reading..

Friday, November 21, 2008

So, so...

Not much to add today. I didn't speak with Diane very long. She said that Cody's day was about the same as yesterday. When I spoke to her they were just returning to the room from the down stairs play room. She said that Cody was misbehaving so it was time to come upstairs. He didn't sound too happy in the background. He hasn't wanted to talk to me on the phone since he left which is normal. I miss him so and can't wait to see him tonight.

That's about it folks...

How about those Steelers last night!

Thursday, November 20, 2008

Somewhat easier day..

If you can call this easy.... Diane said he did a bit better. He needed two half rescues and has not been given any antihistamine for the past two days. She also said that they are going to try and put him on Morphine instead of Delotid today. He's had Morphine in the past and has done well with it. All the children that go through this treatment have pain but I don't know of any that have such rage like Cody. Maybe his rage and stubbornness is what is going to pull him through all of this.

Diane and I both get to a point of frustration. We become very tired and agitated while doing our weekly shift up there. Although they do a wonderful job up there at MSK, little things begin to wear us down and we need to vent. Sometimes that is the way our phone calls go. It's tough.

Diane told me that they are not going to give Cody a treatment next Saturday. It would have been the one that he should get on Thanksgiving Day. Since he is on the two week cycle they feel he can miss a day. If he were on the one week cycle that would not be the case.

Things here are just as stressful as ever. While juggling the kids, school and dinner, I had to have our water conditioner system replaced this week. We are on a well and the water is very hard. Over time it will eat all the copper pipes in your house if the water isn't treated. I just got my heating oil bill and you don't want to know what that came to. Even with the price of oil dropping, we are locked into a higher rate because of a contract we signed last season. It's just highway robbery... Oh and like all of you know, Christmas is right around the corner... Thanks for letting me vent... :)

Thanks for reading....

Tuesday, November 18, 2008

Bad Day....

Just spoke to Diane, she said that Cody had a very rough day. Cody had so much pain that they gave him the most pain medicine that they give. When I talked to her I could hear Cody in the background playing so it sounds as if he is back to his old self. I wish there was a way he could go through this without all the pain and other issues. It is pure hell for him..

Thanks for reading....

Day one...

I spoke to Diane last evening around 6. She said that Cody had a very rough 3 hours. Not from the pain so much but from the antihistamine that is giving as a pre-med for the 3f8 side effects. He has extremely bad reactions to Benadryl so we can't give that to him at all now. He was taking Claritin at Georgetown but they haven't given him that in NY. I guess they may start now.

Justin was really hoping for snow last night. The weather man was calling for a couple of flakes and Justin thought he might miss school. No luck. I had to take him in yesterday morning for an EKG. He was just started on meds for his attention issues. I had hoped that he would've started long ago on this but Diane tried very hard to do extra work with him instead. It has just become too much. In fifth grade he is getting more and more homework. We would spend hours at the kitchen table after school doing homework with him. He just has such a hard time focusing. So last week after many doctor visits and forms being filled out he started on a med. Concerta is the medicine they prescribed. It seems to be helping him quite a bit. He is actually sitting down and trying to tackle his home work himself which is a giant step. It should help his self esteem also. We used to get into some major shouting matches over homework and studying. This should be good for everyone.

Here are a few pictures I'd like to share.

This is Justin and Cody Sunday morning. Cody is showing Justin how it is done, even if Justin doesn't want him to.... LOL

Old man Cody with Mackinzie and Devin his niece and nephew.

Here is a picture of a gang of kids as they beat up some old man... :) Actually this was the day before Corie left for Guam. She called the other day and seemed to be in good spirits. She said it is very hot which we all expected. I cold go for some of that hot weather right about now...

Sunday, November 16, 2008

Heading back to New York

I'll be dropping Cody and Diane off at the train station again today. Cody will start session 3 tomorrow and we will be up there threw Thanksgiving weekend. Diane is going to drive Justin and Daniela up so we can spend the holiday together. Since Cody will not get a treatment on Thursday, I believe he will get one on Saturday. Then we will head back home either Saturday or Sunday.

I'll keep you posted on how things are going throughout the following days.

I really don't try to bombard you all by asking for money all the time but as you know we "BOPs" have to generate our own research funds. This is the second annual "Cookies For Kids With Cancer" drive that is put on by BOP. Here is a link to the website.

Thursday, November 13, 2008

A special thanks....

I would like to put out a special thanks to Elizabeth...

She ran the New York City Marathon last week and raised over $6700 dollars that is going to research for neuroblastoma at MSK. I speak for all parents of the kids fighting the beast, "Thank You Very Much!" Your sweat and hard work is so very much appreciated....

Tuesday, November 11, 2008

HAMA negative...

Cody's blood work came back today and he is HAMA negative. What does that mean? It means that he start his 3rd round of 3f8 on Monday. This is very good news. Many kids HAMA by now so we are grateful that he is still going strong. Being on the two week cycle like Cody means we will be celebrating Thanksgiving and possibly Christmas in New York this year. Christmas if he remains HAMA negative.

I hope all of you have ordered your cards by now. If not, what are you waiting for? This is a chance to not only give to a great cause but actually get something with the special feeling of giving....

Thanks for reading...

Sunday, November 9, 2008

Some good pictures...

Here are a few pictures from Justin's camping trip yesterday. We had a great time even if the fish were not biting.

Here is our tent. It was a beautiful cool night last night. Justin and I woke up to the sound of coyotes howling last night. He asked me if they ate people. I told him "only the little ones." LOL

This is Lake Lagun which is located on Quantico Marine Base.

It's a beautiful lake but we didn't see many fish.

The sky was simple spectacular...

There is not a much prettier time of year than fall in Virginia.

Those boys love to eat.

Friday, November 7, 2008

Christmas Cards...

Don't forget to order your cards. They are selling very well. Diane bought some to see what they looked like. She also purchased the "Hope" Beer Stein. It looks very nice.

I have a busy weekend planned so I may not post this weekend. I have to pick leaves in the yard tomorrow. I will also be taking Justin camping with the scouts tomorrow night. It's not suppose to be that cold so it should be nice.

Have a great weekend everyone...

Thanks for reading....

Wednesday, November 5, 2008


Tomorrow Cody goes in for a few things. He was suppose to get IVIG but his doctor put a stop to that. IVIG is an antibody and it would be counter productive to give it to him before his 3f8 treatment. He will have his HAMA blood taken and sent up to New York for testing. If he isn't HAMA positive he starts on the 17th. He will get his breathing treatment tomorrow. He must have that to protect him against pneumonia. His urine test that he had taken last week came back negative.

I seem to take all this stuff with very guarded optimism. Cody's relapse this time last year has changed me. I was sure he was cured even when people told me not to get too high or overly confident. I didn't listen and it came back to bite me. It's kinda sad but I wish I didn't know what I know now. The real hope that lives inside of me now is the hope that they find a cure soon. There isn't a day that goes by that I don't look at Cody and worry about what I will do without him. I don't sit around and dwell on this stuff all day but I can't help to have that moment every once in awhile.

My daughter Corie dropped by with the kids. This will be the last time I see her before she leaves. It is going to be hard on her and the kids. It is tough anytime you have to be away from your kids but when they are very young it is much harder.. I love you Corie and we will miss you..

Please don't forget to get your Christmas cards. Make a difference in a kid's life.

Saturday, November 1, 2008

Where do I begin?

The day started out great. Cody was in a great mood before he went in for his MRI. We stopped by the clinic before his scan and they were having a Halloween party. He did very well considering he didn't have anything to eat or drink since last night. So we got our call to head up to the 2nd floor to MRI. We got him hooked up and he started his MRI around 12:30.

A little after 1:00 he was finished. So I went in to dress him and wake him up. He started off his normal grumpy self. I carried him down to the clinic and took him to a room so he could get his self together before he went out with the other kids. Well, it didn't go well to say the least. He threw his bag of candy, squeezed two of his bag juices and threw his shoes. I really do have to get something to record our sessions. You just can't imagine the things that come out of his mouth. I don't want to make excuses for him but I'm very sure he does not know what he is saying. He told me that he hated me, wanted me to be dead, hoped that I got eaten by a shark and thought that I was the worse dad ever. I know I heard all of these at least 20 times each. I can usually ignore this.

I kinda lost track of time of when we finally tried to get out of the room. He wanted to go with Jen because he believed he deserved a treat. Well we finally came out of the room even though I didn't think he was ready. He sat on a bench just inside the door that leads out of the clinic. Jen brought over his treasure board. This is something that she drew and painted to help Cody get through each step of his treatments. Each time he finished a chemo treatment or some other type treatment she let him take a treat from the board. The treats consist of small toys or candy. Well when he was getting ready to open his gift some of the other kids started to come around. Children are naturally curious and when treats are involved they just can't resist. So, my son made it very clear that he did not want the other kids standing around looking at him. Time was getting late and I was getting tired so I told him “don’t mind the other kids, you have to get your treat so we can go.” Well he became extremely angry and swung his trick or treat bag around hitting a little girl that was standing next to him. That was it, I snatched him up over my shoulder and headed out the door. While heading out he was biting, scratching, and punched me in the eye. Diane insisted that I post the picture of my new black eye.

Last night.

This morning...

I haven’t had one of these since my navy days. So anyway, as I’m carrying him out to the truck he is pleading with me to take him back to Jen so he can give her a hug. There was no way this was happening. I’ve seen him before when you think he is truly over the meds and is in a better state of mind then he reverts right back. Getting him in the truck was no easy task. I had to slide him across the seat and slam the door shut. I was so upset I had to get in the truck and gather myself before I could leave. It got so bad that I started to get into a shouting match with him. This is the first time that it took everything I had to remind myself that this wasn’t really Cody, it was the meds. We screamed back and forth until we got a mile from Georgetown. Every time he wanted to say something to me I told him I didn’t want to talk to him. I didn’t say a word until we got to Centreville. That’s about 45 minutes. There we got off 66 and I stopped at McDonalds to get him real food. Now mind you, this is about 3:45. He had not eaten anything but two small candy bars before this. This is part of the reason for his anger issues. He just doesn’t understand that if he would eat he would feel better faster. We have lobbied long and hard to have this type of procedure done first thing in the morning so he didn’t have to wait to eat. There is another thing that had a hand in this meltdown. We have found that if they add a little dextrose to his IV during the sedation he does much better coming out. Well, I didn’t remember and I paid the price. Cody ate 5 of the 6 McNuggets and half of the fries and it was like he was a new kid. He did not mention what had happened and Diane and I took the kids Trick or Treating.

As I sit here and type this entry this morning I can’t help but feel ashamed of myself. I got caught up in the situation and lost sight of the big picture. Cody really doesn’t know what he is doing. As I try to look at this from a distance it reminds me that this disease is not just doing what is obvious to Cody. Yes, the treatment breaks down his little body as a sacrifice to keep away the beast and save our little boy. But there are other things happening here. All Cody can remember since his 2nd birthday is needles, taking nasty medicine, feeling very bad, spending long segments of time away from his brother and sister. Missing school and friends then having to start over again. My family, we long for normal days. Days of just spending time doing the things that most take for granted. I joke about Cody’s vocabulary. He can curse like a sailor when he is angry. I don’t approve of this but it’s one of the few ways Cody can get control in his life. I know that it is my fault that he has been exposed to such language in the first place. It’s just one of many of my short comings as a father and parent. This disease steals from the siblings also. There is obviously the underlying fear of losing their loved one. They are never aloud to defend themselves against Cody when he is going through one of his meltdowns. They just have to bite their tongue and stay away from him. Their childhood is being restricted also. They can’t do all the things that they would like. We can’t give them the one on one time that we should because we have to give much more to Cody. It takes all we can muster to keep this ship afloat. So, we just keep going the only way we know…

Results: The preliminary results of the MRI are good. Dr. Abu-Gosh was very pleased and called Diane with the results before I got home yesterday. Now we settle in and try to enjoy the next two weeks before we head to New York again.

Thanks for reading.