UPDATE.....

We just got home and Cody did a great job today. Not ten minutes after we arrived Dr. Shad called to let us know the results. She said the bone scan is designed to tell you if there has been any injury to the bone whether it be from trauma, infection, or the beast. They expected that area to light up and it did. She said the top of the fibula appears to have been eaten away. The good news is that no other bones lit up so we hope that if it has to be the beast than it is confined to that area. We are still praying for the slim chance that it is infection and that the xray has fooled everyone. The MIBG is scheduled for next Wednesday. That test is specific to neuroblastoma and will light up wherever it is detected.

For now this is it. Not total good news and not total bad news. Please keep praying for our boy...

Thanks for stopping by...

We love you all....

Xrays

I don't think that I have mentioned it before because I was hoping it would resolve itself. Cody has been limping for quite some time. He hurt his leg when we were in NY for Thanksgiving. He still has a very noticeable limp which doesn't seem to be getting better.

Diane has taken him in today for blood work and she hasn't mentioned if the results are back yet. She did tell me that they did an X-ray of his leg and they are concerned with what they are seeing in his knee area. She said that Dr. Abu-Gosh is on here way down to look at the slides. We may have a bone scan coming up soon. This raises flags for us because limping is a major sign of neuroblastoma. That would be a sign that it is in his bones. That would also be devastating. It would be a sign that it has returned and advanced dramatically. I pray that I am overreacting.

Devastated!
I just got off the phone with Diane. Cody has a lesion on leg. He will be getting an bone scan tomorrow morning. This is just insane... How can this happen while he is getting 3f8? This disease is pure evil...

I asked Diane if she posed the question to the Dr. if this could be a result of the fall while he was in NY. The Dr. told Diane that she believes the beast has returned. He will get the scan tomorrow and he will have an MIBG next week to determine how much it has progressed. I pray they are wrong but I just don't feel good about this. I can't or should I say I don't want to put my thoughts into words right now... I will post tomorrow when I get more info...

Pray for our boy please....

Happy Holidays Everyone...

I hope you all are enjoying your holiday season. Whether it be Christmas, Hanukkah or any other tradition I hope it is a good one.

As for the Johnson's we are doing very well. We are all home and the kids are making one mess after another. What else is there? :) I took a couple of pictures but some didn't turn out quite as well as I had liked. I guess it was the lack of sleep. I thought the camera was focused but it wasn't. LOL. Whenever I am home for a few days and I don't have to go into work I'm usually running around trying to get things done. Well I'll tell you the truth. This weekend I just feel like vegging out.

Once again I'd like to thank all of you for your continued support and prayers. These have been very hard times and as much as it wears us down we are all very much aware that it could be worse. We will take it as long as it takes. We pray everyday for a cure...

Love you all and thanks again!




Diane's father said jokingly years ago, "I'm going to call Child's Protective Services on you because you are turning them into Steelers fans. He is a Redskin's fan I might add. I just think I'm raising them right. :)



Daniela loves her Steelers..

Happy Christmas Eve Everyone......

I just want to touch base with everyone this morning. I took Cody in yesterday to get a quick checkup before the holidays. We took Justin with us because Diane was at work and Daniela went to a friends house for the day. Everything went very well. Dr.Shad was very happy with his overall appearance and the way he was running around. His blood work came back better than last week as did his liver numbers. He seems to be recovering nicely. His liver is still a little swollen but the Dr. doesn't seem concerned about it. She believes it will be back to normal soon. Dr. Abu-Gosh will be contacting New York and finding out when we will be heading back up. I assume it will be after the New Year. I will keep you all posted.

Yesterday was suppose to be Dr. Abu-Gosh's day in clinic but they said she has hurt her back and wouldn't be in. We wish her well and hope she has a great Christmas. She is our little angel.

I'd like to take this time to thank all of you for the continued support and prayers. The fact that you all stop in regularly to check on Cody and my family means the world to Diane and me. We wish you all the very best of holidays and hope you get want you want from the Big Fella....

Merry Christmas!!!!

Going into clinic tomorrow...

I will be giving blood in the morning and then coming home and taking Cody to the clinic. He'll be having his blood drawn and Dr. Abu-Gosh will get what will hopefully be her last Cody checkup of the year. Cody had been put on Augmentin for his runny nose but it seems he is now allergic to it. After 3 doses yesterday he broke out in hives last night. So we discontinued that. I guess we will just deal with the runny noses for now. We'll take it...

I've got to tell you all, it just feels great that we are all home for the holidays.

Corie, we miss you and wish you were here.

Thanks for reading....

Thank you for the prayers.....

I just spoke to Diane and she gave me the preliminary results of the MRI today. She said that from what they could see, he is looking pretty good. There was nothing that stood out as being a problem. Also, his bilirubin numbers are down dramatically. They were in the 800's and are now down in the 200's. I truly believe it's the prayers that are doing the job. God is great!

I will post later and give you the latest as soon as she gets home...


Thank you very much......

Also, if you live in the Washington D.C. viewing area Diane said that at 5pm they are going to have a spot on the channel 7 news about Georgetown Clinic. I don't know if that means Cody is going to be on there or not but you can get a better idea of what it is like down there.

Just a note before the MRI today...

As most of you know Cody goes in for an MRI today. We found out a number of things yesterday that we have been waiting to know. First off, Cody is not HAMA! That is unbelievable. Although his number was just under the HAMA threshold it is still under and once we get his liver issues identified and addressed we can proceed with 3f8 treatment. Obviously we will not be heading to New York for the holidays. At least I don't think we will!

Now for the second bit of news. Dr. Fishbine, the doctor that did Cody's liver surgery has suggested a couple of things that he wants checked on this MRI today. He wants the bile duct and arteries checked for possible scar tissue blockage. It's just a couple of possibilities that may be causing his problems. Cody's blood work that was taken on Tuesday came up positive with the "Epstein Bar Virus". Dr. Abu-Gosh believes that he contracted the virus when he was sick with what the whole family had around the Thanksgiving holiday. Cody's little body just couldn't fight it off because his immune system is compromised.

Please pray for good results today. Our little man needs all the help he can get......
Thanks for reading....

Some good, some not so good....

I took Cody into Georgetown today. He had his blood drawn and we waited for Dr. Abu-Gosh to get the results. She came in and looked at him. She said he looked pretty good except for the very noticeable tint to his skin and his eyes. As far as his blood goes all the high numbers except for his Bilirubin numbers are back to normal. The yellowing is caused by the Bilirubin numbers. Many of you may have heard of Yellow Jaundice in small newborns. It's basically the same thing.

They have scheduled an MRI for Friday. The ultrasound that was done last week didn't show anything in his liver but the MRI is much better.

He is doing very well besides his outward appearance. Right now we just don't know what is going on. It's good that all the other numbers are back to normal. We just don't know why his Bilirubin numbers are so elevated. It could be that his liver is recovering from a virus and it just doing it in it's own way. Or, well, I just don't want to think or mention what else it could be. I've seen so much bad come to these little warriors. I pray that it is nothing....

Steelers Win!!!!

What a game! That was one of the best games I have ever seen, let alone been to. I was able to get tickets to the game from my boss. They were very good seats about 35 rows up from the field. I took Justin and Daniela to their first Steeler game. I hope that will be something that they always remember. Daniela tends to watch more football with me than Justin does but he definitely had a great time also. When I got the tickets earlier in the week I was trying to figure out who I could bring along with us. There were 4 tickets so I was trying to come up with a Steeler fan that wouldn't mind going with me and the kids. Diane mentioned that Daniela's teacher was a big Steelers fan and that I should invite him. So I did and he was very happy to go.

We had a great time. Since I had the kids with me I didn't wear my Steelers garb. I didn't want to subject them to the harassment and abuse. I went to a game in Baltimore about 5 years ago and I swore I'd never go again. They have a very rough crowd up there. But it turned out very nice. We were able to sit in a mostly Steeler section and didn't have to hear too much bad language. The game went just about exactly as we thought it would. The 2 top defenses in the NFL slugging it out. The Steelers waited until the end of the game to mount a charge and score a touchdown. What a game....

Next up: Tennessee!

Go Steelers!!!!

They are home....

Diane and Cody are home. After having his blood checked again and getting a checkup they let him come home. Actually a couple of his liver numbers have come down from yesterday. I have to tell you, I feel so much better. But his liver is very inflamed right now. I just don't feel like he is out of the woods yet. This is just something he does not need right now..

Right now he is running around the house and being Cody... I feel a little better but I will really feel good after Tuesday and hearing that everything is OK.

Heading into Georgetown...

Diane just called me. She is taking Cody in because he is complaining of a tummy ache. She says she can really notice the yellow. This really has me worried now. Oh I pray to God that it's nothing...

I will update as soon as I hear something...

A long, long day.....

Cody and I headed into Georgetown this morning after we saw the other two off on the school bus. Diane seemed to contract the same thing that the rest of us have had over the past couple weeks. She came home ill yesterday after work but seems to be feeling better this evening.

So we sat in bumper to bumper traffic for about 90 minutes while heading in. Funny what a little rain will do. When we got to the clinic they accessed Cody's port and drew blood for the HAMA test. After they drew the blood the young intern doctor came in to check Cody out. She did the normal stuff and Cody cooperated with her very well. When he isn't spending all of his time in the hospital he actually is very easy going. When she finished we headed back out of the room so Cody could play with the other children and Jenny. It wasn't long he had to go back in. Dr. Gonzales was doing clinic so he had to go in and let her do the same things the intern did. After finishing she looked at me and mentioned that she was concernded about Cody's eyes. She said they looked a little yellow. She then wanted to draw more blood for other tests. This was not real popular because they had already de-accessed his port. So after getting more blood and sending it out Dr. Gonzales came in and filled me in on her concerns. She said that the yellowing in the eyes was a sign that he is having problems with his liver. The blood test confirmed this so she sent us down for an ultra sound. This was the point that I was kinda glad that Diane was feeling under the weather. She would normally have called me about 5 times by now and if she knew the blood numbers before we got results from the ultra sound she would be worrying to death. So after the tests the Dr. was felling much better. She told me that the liver numbers might have been caused by a viral infection. He is much more vulnerable than you or I when it comes to the bugs that are out and about this time of year. So they drew another batch of blood to do more tests and scheduled him to come in next week.

You can see how our temporary relaxed state can be thrown into a tailspin in a single moment. I'm bushed....

I'm still here.....

Sorry for slacking on posting...

When we are home it is a little a hard to find as many things to write about. OK, let's see, I think I mentioned that Justin and Daniela were sick while in New York. Well I seemed to get something similar on Thursday and spent most of the night praying to the porcelain god. Although I didn't stay sick it took me a few days before I started to feel right. The bad thing is Cody seemed to get the same thing on Friday. He was back to his old self by Saturday.

I will be taking him in for his monthly tune-up and have his blood taken and sent to MSK for the HAMA test. We will be praying for NO HAMA!

Here is some great 3f8 info for you to read.

My brother Alan has just got out of the hospital. He just had his second back surgery and now is made of screws and pins.. I wish you a speedy recovery Alan. Love Ya!


Here are some of the pictures from Time Square that I promised.

















I really don't know what to say on this one...



I think I know what I'm going to get them for Christmas...



How about a little Ricky Ricardo?









I'll try to write soon...

Thanks for reading...

Good Morning Everyone....

Sorry it's been a few days since I have updated. That is because there is not much to update. We get home on Saturday evening after a very long ride home from NY. Traffic was UNREAL! I don't know if we will try that again...

Cody will go in next week for his monthly breathing treatment and his HAMA blood test. As I stated before, if he is HAMA positive he will most likely have to get some type of chemo to knock his system down again. That will bring the HAMA number down so he can continue this treatment. They are working on a vaccine for neuroblastoma but nothing is ready yet. 3f8 buys us time, that is the bottom line.

I have a few nice pictures from Time Square that I have to upload. I'll try to do that soon.

Right now we are doing our best to prepare for Christmas and keep this train rolling. Like most people right now, juggling finances is one of our main worries. Things are tight but we will get through it. Thank God, the oil prices have fallen!

Thanks for reading....

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.

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..... :)

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..

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!

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..

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!

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....

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...

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.

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....

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...

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.

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....

Update....

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.

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 2^nd 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.

Happy Halloween!

This is the first Friday Halloween that I remember. Maybe I just haven't been paying attention. The kids are excited about trick or treating. I have a feeling that I'll be carrying Cody half of the way.. We usually go to another nearby neighborhood because the houses are too far apart with lots in our neighborhood.

Today Cody also goes for his MRI at Georgetown. I will be taking him. Diane will take him one day next week for a couple of other things. If all comes out OK with the MRI we will stay the coarse with the 3f8 treatments in N.Y.

I'll check back later when I have more info.

Don't forget to order you Christmas Cards.. You are giving to a great cause while getting some great cards in return....

The Christmas Cards are ready.....

You can now go to Cafepress and order your cards. Two of them are up now and the other one will be up by tomorrow. Order yours today...

Sorry for waiting so long....

Diane told me I needed to update the blog. I kinda had to get a few things done at home this week so I wasn't too worried about it.

Friday was a crazy day. Cody had his bone marrow first thing in the morning and then had to go straight to his 3f8 treatment. The bone marrow went well but it's the coming out of the Propofol that is hard for him. As soon as he wakes up I have to try to get him to drink the Beta Glucan. He must drink it an hour before he can start the 3f8. So, we were very pressed for time and had a train to catch at 4:00. Well, it was pure hell trying to get him to down that Beta Glucan. God was looking down on us because after the late start we were lucky enough that he did not need a rescue. This meant that he came out of the treatment in short order. So, we finished, got back to RMH and made the train in plenty of time. We made it back to DC by 8pm. Diane picked us up and the boys were so happy to see each other. I'll tell you, no matter how hard Cody plays and hits Justin, Justin takes it in stride and just enjoys being with Cody. I think he realizes how precious his time is with Cody. Most older siblings don't tolerate their younger siblings.

Daniela has had a rough week. She has been dealing with a virus all week. She missed school all week and has just been miserable. We had her stay at Diane's sisters Friday night just to give her one more day before possibly exposing Cody to that virus. Well, she is home and doing quite well. She actually went with me to a friends to watch the Steelers lose today. What a rough game!!!

By now you have noticed the Cody song. It was written just for him by an organization called 'Songs of Love'. They talked to us on the last trip to NY. They asked all kinds of questions about Cody, his likes and dislikes. The song made me cry the first time I listened to it. If you like the song you can go to www.songsoflove.org and click on the Family & Friends Ringtone Download link. Simply type the last name Johnson in the 'Child's last name' field and the number 16836 in the 'Child's Record Number' field. There is a minimal fee that is charged for the download. It helps these wonderful artists and people afford to continue to bring joy into the lives of these children.

The drawings will become available any day now. I will let you all know as soon as they do. I'm excited about that....

Thanks for reading...

Quite the long day.....

The day started with Cody getting up at 8:30 am. The first thing he said to me was that he wanted to go to school. Well that meant heading out there soon after. He really enjoys his time with the teacher. They have class in the waiting area that is adjacent to the elevator as you get off. If not one on one it's usually only two or three kids so they get special attention. Ann Marie is a very nice lady with a thick New York accent. She is very patient with the kids whom all have different needs. So I tell Cody I will give him 1 hour because he just finished his pre-meds and it takes that long before they can start the 3f8.

Around 10:00 I tell him it is time to go to his room. Without a fuss he runs out of the waiting area. I don't know why but he says that he likes going to his bed. I would expect quite the opposite. This leads me to believe that he doesn't remember everything that goes on in there. "I'm thankful for that." So we get started and he starts watching Scooby Doo. That works pretty well on keeping his mind occupied. Then the dance therapist comes in. Cody really loves when she spends time with him. They play with little toy animals, scarves, percussion instruments and listen to 'New Age ocean music.' :) She has the special ability to speak softly and let Cody take control of play time. He uses his imagination like kids do and she plays right along. It really helps him focus on something other than the pain. Well, he made it through the whole infusion of 3f8 like he usually does and even made it through the flush without any pain. As they were playing with the animals he asked her one of his 'drunk questions.' What I mean by 'drunk question' is it is one of those questions a drunk person would ask that no matter how you answer it you can't get it right. Well he kinda lost control for awhile after that and he said that he didn't want to play with the animals anymore. By now, the meds are really kicking in. Now he shifts his attention to Monopoly. This draws me into play time. I have found that when Cody is not going through 3f8 treatments he plays Monopoly like anybody else would. When he plays while getting his meds it is a completely different game. He tells you what properties you may or may not purchase. Cody is very good with money and numbers but while under the influence he does some very creating financing to say the least. Put it this way, if Cody grows up to work on Wall Street and dabbles in alcohol or drugs we will be in for a recession for sure... :) So we play the game and he actually eats for me while playing which really helped him I think. He was definitely feeling some pain because we had to stop 3 or 4 times so he could lie down. After a few hours the dance therapist says she has to leave and Cody gives her many kisses and hugs.

Now comes the waiting game. I get him to eat as much as I can. He needed two rescues so I was hoping that it would help him recover more quickly.
His MIBG injection was scheduled for 2:30 so we started to prepare to go down stairs at 2:00. He asked if he could go to the play room for a minute while I gathered the stuff up in the room. I asked if he felt OK and would be nice. He said "yes," and ran out of the room. I hurried because I wasn't so sure he was ready for the world quite yet. Or if the world was ready for Cody.... As I rounded the corner hallway heading to the play room I hear Cody cursing somebody out in the playroom. When I get there he is shouting at the top of his lungs for someone to stop looking at him. I knew it was too good to be true. Anyway, I tell him that we had to go get the injection and the whole trip down he was telling me that I was the worse father ever. I hear that so often that I'm starting to believe it... LOL... When we get down to Nuclear Medicine he leaves a path or open mouths along the way. He drops a couple of 'F' bombs and 'Triple asses' as he passes people. I just apologize and tell them that he is on medication and he can't help himself. After sitting in the waiting area for a few minutes having him kick me and telling me to shut up a lady came in and asked me if I wanted to sit in one of the side hallways. She knew what was going on and just wanted to make things easier for me. I accepted and picked Cody up heading out the door. He started laughing like we were playing a game. He was right on the edge of coming out of the high he was on. As we sat down in the hall he spotted a water fountain with little cups. He said he was thirsty and headed in that direction. My old Cody seemed to be back. He was blowing kisses to all the ladies as they walked by. It is funny to watch people when your child acts so loving and polite. They almost don't know how to act. It definitely puts a smile on their face.

Well we get the injection and head back upstairs. The injection is for the MIBG scan which is scheduled for today. We had to go wait upstairs for his MRI scan which was scheduled for 5:30. So we played more board games while we waited.

If any of you are familiar with the MRI it is a very loud, noisy and scary procedure which Cody has always had while under sedation. Well someone decided that he could do it without this time. I had no problem trying because he is doing every other scan without sedation now. So we get started. I had to put a gown on also while going in with him. The MRI machine is a huge magnet that can do major damage to any metal you have on or in you body. It will also erase any of your credit or atm cards. So you must leave all your personal items outside in a locker. The MRI guy puts Cody up on the table and lays a heavy pad on his tummy. It looked and felt like a lead blanket but I don't know for sure. I didn't ask. Then he strapped him down to the table and got ready to start. Cody didn't say a word and laid there nicely waiting to get started. The table rolls him into the machine which is a tube that is just big enough for Cody's shoulders to fit. Now I must say, I would have to keep my eyes closed on this one because I think it would make me a little uncomfortable. Cody seemed to have no problem. Then the process begins. The machine starts with a series of different tone horn sounds. It had a little timer on the front that I could read. It read 3 minutes and it counted down. I thought to myself "3 minutes, this will be a piece of cake for Cody." Well, that was just a small part of it. When the time elapsed it started at 3 again and began another sequence of loud tones. Then again and again. I knew it was only a matter of time before Cody would want out. I think it would've been OK if it weren't for the loud sounds. Well he was about 15 minutes into the procedure and Cody wanted out. I asked the guy on the other side of the glass how much longer it would be. He said "15 or 20 minutes." There was no way.. Cody began to protest and started to thrash about so I asked the guy to stop. This was just too much. I told Cody I was very proud of him for being so brave and that he did his best. Cody then said to me "I told you I needed my 'Magic Milky' Dad." His 'Magic Milky' is the sedation drug they use on him that is white and looks like milk. I told him I was sorry but we had to try. He agreed and we headed out to get dressed. We will have to reschedule the MRI for another time. I hope it is when we return next month but we will see.

At 7pm we headed back to the RMH just in time for dinner. A church group was putting on a party for the kids and they had a DJ. Cody was doing his best 'MC Hammer' impersonation. Everyone loves to see him dance. He really is pretty good. He doesn't seem to have the dreaded 'White Man's Disease." LOL

I'm waiting for a load of laundry to dry right now. I'm going to let him sleep as long as he wants because he doesn't have to be at the hospital until 11:00 for his MIBG. I will have to get the room clean and everything packed tonight because we will be pressed for time tomorrow. We might not be able to get back here in time to check out so I have to get things packed and ready to go tonight. We are both ready to go home... :)

Thanks for reading.....

Be careful what you wish for.....

Well we found out today that Cody is not HAMA. And we found out in a big way. I have to think of a way to record this experience so that all of you can get a little understanding of what it is like. This is an absolute HELL!

This day started off at 6:45 a.m. I had to get Cody up so he could take his contrast for the CT scan he was to get at 8 a.m. This was a battle from the start. There is a fine line that must be walked when dealing with Cody. On one hand you have a little boy who wants the littlest bit of control of anything that is going on in his life. On the other hand we must get him to take meds, eat when we think he must, not eat or drink when it interferes with the meds and pre-meds. This by itself is very hard. He gets grumpy from not enough sleep. He gets grumpy from not being able to eat. Then we have the reaction to the drugs themselves. To say that this makes him act like Jekyll and Hyde is the understatement of the year. I can't even begin to quote the things in sequence that came out of his mouth today. On the Cody scale of '0 to 10', 0 being the best. I was the zero Dad in the whole world. Then 30 seconds later I am the 1,000,000,000th. The same goes for his nurse Kasey. She did the very best she could to walk the line of keeping him happy and doing her job. Sorry to say it just couldn't work. The absolute hardest part of this is telling yourself that he cannot control the things he is saying or doing. His body is hurting more than we can imagine so we give him pain meds that make him someone he is not. He says and does hateful things that he just can't control. Kasey says that all the kids have different reactions to these meds. Some fall asleep, some get very quiet and others get angry. Here are a few things that I can remember. When he didn't want Kasey or me to talk he would say, "turn the lights off, zip your lip, and don't make a sound." Meaning, shut your mouth. Believe me, he had no problem telling either of us to "shut up." If Kasey had to go to the room next door Cody would throw a fit. He told Kasey that he didn't love her anymore and he was taking all his kisses and hugs back. He told me that he wanted to go to a new family. This is not new but he said some other things that I just can't write here. I'm not talking about vulgarity but things that no 6 year old child should even think let alone say. I know he is exhausted. He has been crying, shouting or talking nonstop since 10 a.m. His eyes, lips and face are swollen. His voice is raspy and his nose is running. Myself, I have a splitting headache and I'm tired. I entered the day hoping and worrying that he was HAMA. By the end of the day I'm hoping that he didn't hurt much and that the meds will wear off soon.
This whole process is insane. As I type he is finally telling me how much he loves me and that he is sorry for the day... It's not like he had any say in his day....

Thanks for reading...

Sorry....

I just got off the phone with Diane and she gave me the 3rd degree for not calling sooner. My phone was dead when I got back to the RMH. So I hooked it up for a charge and we headed out for pumpkin painting and then to McDonalds for Cody's favorite dinner.

Cody didn't have much pain today but his heart rate went up to about 120. He was a little grumpy but we are not feeling good about this. They drew some blood this morning to do a HAMA test and we will find out tomorrow. We really don't want him to HAMA this quick. We hope that he will make it at least 4 sessions before he HAMAs.

Today he had his PET scan, tomorrow he has his CT scan, Wednesday he has his MRI, Thursday he has MIBG scan and then he has his Bone Marrow on Friday. On top of all that we must juggle not eating or drinking before those tests and not drinking around his 3f8 that he should be getting everyday also. "Can you say WOW?"

Well, that's it. Sorry for waiting to call Diane.... :)

Famous Person Alert

Diane, Cody and I walked up to F. A. O. Schwarz the big toy store. I was able to get a few good pictures before the battery on my camera died. I'll post them when I get home next week.

While walking through Manhattan I spotted a famous person. Some you Law and Order fans will know him. Dennis Farina.



He and two other gentlemen were walking away from the Maserati dealership. He was about a foot away and walking in the opposite direction. I said to Diane, "that is a famous actor. I can't think of his name. He's on that show I like to watch all the time." I thump myself in the forehead because I can't remember crap anymore. My memory is getting so bad. Well anyway, it's good that I didn't ask him for his autograph because I would have been ashamed because I couldn't say his name. Actually I wouldn't have been as ashamed as Diane would... LOL