Seems like a good time for pictures....

I thought this was a good time to download the pictures from my camera. I wanted to get ready for all the Super Bowl Pictures.. Hope you like them Mom...



Enjoying time with his brother and best friend...


Here is Cody's new favorite game. The castle game.. I have yet to win.. :)


He knows exactly how he wants to set it up...


You can really see the yellow in Cody's skin compared to Justin.


Tonight while watching Sponge Bob..


Here he is schooling the new art therapist and mommy...


Showing his great ability to concentrate....
I think that is what gets him through all of this...

One step forward, one step back...

As good as yesterday was today was that bad. It all started about 5:30am when Cody had a real bad reaction to the IVIG they were giving him while he was sleeping. I tried to consolidate the things that needed to be done so we could get home early today. Well, we just got home at 8:00. The reaction that he had to the IVIG was major shivering and then fever. It took him 40 minutes or so to get through it. I felt so bad for him. There was just nothing I could do to stop it. The treatment was suppose to last for 4 hours but they stopped it at 1 hour. He was supposed to go down for a CT scan around 9am but I asked them to wait until he got up on his own. He did around 9:30 and they finally fit him in around 11:30. All and all he had a pretty good day. He was fairly cheerful for the bad night sleep and all. So before we headed down for the scan the resident can in and told me that they wanted to try and finish the IVIG treatment. There were going to slow it down to about 5 hours and they gave him different pre-meds before. He finished and was de-accessed about 7pm.

Now back to the scan. It went very quick and Cody was great. He was very still and we were in and out in 10 minutes. I really didn't think about the results today. I was focused that the IVIG would go without a hitch. As we were sitting in his room playing Wii, Dr. Abu-Gosh came to the door and asked if we could step out of the room to talk. I knew instantly that there was a problem. She gave me that look and told me that she could see 4 or 5 spots on each of Cody's lungs and one large spot around his wind pipe. I felt as though someone just punched me in the stomach. Right now we are going to try and enjoy the weekend and head back into clinic on Tuesday. They will probably start radiation on his throat area in hopes of stopping the advance of the large spot. We have to watch his breathing and pay close attention to his swallowing.

I wish I had better news for you all but I don't....

Thanks for stopping in...

A new day...

Well Cody just finished his last chemo of this cycle. He is in great spirits. He hasn't mentioned his feeding tube once today. His bilirubin is just about the same as yesterday and there is very little change in the rest of the numbers. He will be getting IVIG (Intravenous immunoglobulin) at 3am and then he will be getting a CTscan of his head and chest around 8am or when they can fit him in. After that we are out of here! :) He then has to come into clinic on Friday.

As suspected the insurance company rejected the Cyber Knife procedure. Dr. Shad said that is the norm. We will appeal and she hopes it will be approved. Isn't it just crazy?

I asked for a little more definded goal as far as the feeding tube goes. Dr. Shad said that the goal is about 5 pounds. We will be hooking him up at night from 8pm to 8am. The hopes is that he will eat during the day and with the night suppliment he can put on some pounds. One of the double edged swords with Cody is that he is very active and gets around very well. The only problem with that is, he burns calories... Just can win right? Well I have to post now because he is demanding that I play a castle fighting game with him. I have yet to win at this game.. LOL

Rough morning...

Well, Cody had a pretty good night sleep but that didn't seem to help this morning. He got up about 8:15 and we headed down to have his radiation treatment. He did very well and we finished pretty quick and came back up to start his feeding tube procedure. The process it's self went without a hitch. When Cody awoke he was none too happy. The feeding tube really irritates his throat. He is demanding to have it taken out. I've tried to side track him but he will have none of that. He just cried himself to sleep so we will see how he is when he wakes up.

I have no news on his blood numbers yet. As soon as I get them I will try to post. I'm a little discouraged though. We can tell a lot about his liver by looking at his stool. When he is having bilirubin issues his stool is very light in color. Well this morning he had a bowel movement and it was very light in color.

It's times like these that I feel so helpless. I hate making him go through all of this. It's just crazy... He has been through so much already.. If we end up taking this tube out it means that he will have to get a button place on his tummy. That will be the access to a feeding tube. I loath the thought of having another hole put in his little body... It's just not right...

Just wanted to let you all know what his blood numbers are. Well as suspected his bilirubin numbers are up to 16.4 as well as all of his other liver numbers are back on the rise. The doctors seem to really be at a lose. They have nothing firm to point at, just the suspicion that it has been drug induced and we have to wait it out.

It's been a very long day. Not only because of what Cody has gone through but Georgetown in general. Many of the nurses we know and love are gone. Some have left for other hospitals. Some are doing the traveling nurse gig and some are in different departments. We still have some of the nurses. The doctors are all still here and we have the art therapists that mean the world Cody as well as Diane and me. One part that really seems to have hit a big time low is the food service. Many of you have heard me mention it before but when you are in-patient you are pretty much at their mercy. It seems that the weekend doesn't really matter much to the people they contract the food service out to. It's like they all leave for the weekend and don't really care much about what happens there on the weekend. Yesterday Diane ordered fish sticks for Cody and they sent up a piece of fish. That's right, a piece of fish. No side dish, no dessert, just fish and milk. This is dinner for a 6 year old that you are trying to get to eat. Today they sent breakfast to Cody but he was NPO - Non Per Os (Latin: Nothing by Mouth) because he had sedation for the feeding tube procedure. For lunch they didn't send him any lunch at all. I had to try and get Cody to eat some microwave lasagna. As of 6:30 this evening they still had not served food. There are two reasons I going off on this subject. First, it's because all of this stuff builds up and this is my stage to say what's on my mind. When families are in this position and they are worried about their critically ill child they shouldn't have to worry about this crap. The second reason I'm bringing such attention to this is because my friend Jeff works at Georgetown and I know he reads my blog. He will make a point of bringing these issues to the attention of the proper people.

Tomorrow Cody will have his last chemo of this cycle and his last radiation of this cycle. The doctor hadn't come to talk to us before I left so I'm not sure what the plan is.

I'm tired and I need a shower. Thanks for listening to me.. I hope I have better news for you all tomorrow.

Quick update....

I spoke to Diane earlier today. She told me that Cody's bilirubin went back up to 14. The doctor tried to reassure her by telling her that this often happens. When things are going to turn around they often fluctuate back and forth. We hope this is the case. I will let you all know tomorrow when I find out tomorrow's numbers.

Thanks for stopping by and praying.....

Update...

I just got home with Justin. He and Diane came down and Justin spent a few hours playing with Cody before I left. Today was a pretty good day for Cody. He got a chance to sleep in this morning. He had a noon time X-ray which we don't have any info on yet. As far as his liver numbers go, I have good news. When his bilirubin was checked on Wednesday it was in the 17.s. Yesterday it was in the 14.s. And this morning it was 11.4. We hope that this trend continues for sure.

Cody's chemo and his radiation on the right leg will end on Tuesday. We are not sure how his body will react to this half dose chemo. In the past we have went home until his body hit ground zero and he got a fever. The last time he had chemo it was a hard session right before he started 3f8 and they made him stay until his body recovered from the stem cell rescue. With this session being half dose, I hope he doesn't hit rock bottom and his liver fully recovers. We hope and pray that things keep heading in this direction.

I hope to get a few pictures while he is in the hospital. I'll post them when I get them.
Thanks for stopping by..

Cody started today...

He received his first of 5 chemos administered around 6pm. It is half the dose he would normally get because they are being very cautious with his liver. Cody is in good spirits and playing Wii right now. We are glad they got started today. It appears the radiation is doing it's job on the right leg which they have been treating. But, on Wednesday he started complaining about his left leg and we believe that the neuroblastoma is progressing rapidly. He will be going for an X-ray tomorrow to check out his leg. Also, his liver numbers came down slightly today. We will be watching them very closely.

I must admit, this is one of the most stressful admissions on Diane and me that Cody has had. We are really walking the tight rope here. He desperately needs this chemo to stop the onslaught of the beast. But on the other hand we really don't know how his liver is going to react to all of this. It has also been decided that he is going to have a feeding tube placed in his nose. Although this is not a very popular thing for him, we all agree he needs one right now. His appetite has really taking a hit and he can not afford to lose anymore weight. We are not sure if it is because of his liver issues or if it is one of the meds we are giving him to get his liver going.

I will keep you all posted tomorrow when we get back results of the blood work and X-ray.

Thanks for dropping by.

Chemo postponed.....

I had just got on the road headed for Georgetown when I got a phone call from Diane. They have decided to postpone Cody's chemo at least until Friday. His liver numbers are even higher than last week so they didn't want to take a chance and damage the liver even more. The theory behind this idea is this. Diane thinks Cody looked worse on Sunday and he is looking better since then. The doctors hope that his liver numbers crested on Sunday and are heading back down. I guess we will find out on Friday. He still has to go in for radiation tomorrow but that is it. Par for the course you know?

It is with a heavy heart that I mention the passing of a very good friend. Steve Thornton of Louisville, KY died as a result of a camping accident this past weekend. I ran many races with Steve and his brother Pat over the past couple years. Steve is the guy with bib #6420 standing directly behind me in this picture from the Virginia Beach 1/2 marathon in 07. Steve was always making trips up to Virginia to help with a yearly charity event and run races or just hang out with friends. He was a very good man and will be missed. My prayers go out to him and his family...

Update...

I just wanted to drop a line and let everyone know what is going on. Diane will be taking Cody in tomorrow to start chemo. It has been determined that he will stay in for the duration of the treatment because of his liver issues. His bilirubin numbers on Friday were as high as they have ever been. We are hoping that they are swinging back in the right direction by tomorrow. He seems to be acting OK but his appetite is taking a major hit. It has become increasing difficult to get him to eat. So, he will start Wednesday through Sunday. I will relieve her Wednesday evening and do our usual 24 hour shifts.

Ounce again I'd like to thank all of you for being so supportive. It means the world to us that you all stop in and check on Cody and the family. Bless you all.

The Steelers Win!!!!!

Super Bowl Here We Come!!!!!



The whole Johnson Family sat and watched the game together...... We had a great evening... Go Steelers!!!!

Some info......

Well as you have noticed I have been slacking when it comes to posting. There have been a few things going on since I posted the last time. Cody had to spend the night on Wednesday because they did a live biopsy. He fared pretty well through the process. They wanted to keep him overnight to monitor his blood pressure and just in case he had any bleeding. The liver is a very vascular organ. I wanted to get the results of that test before I posted again. So I took him in this morning for his 4th radiation session. We also went in and had blood drawn to look at his liver numbers. His bilirubin has been very high and he has not been able to start chemo until they have determined what it is that is causing it. His skin and eyes have a yellow tint to them. The problem is the liver is what processes the chemo and if it isn't working he will develop high toxin levels in his body from the chemo. So the results of the biopsy are such that they don't see any infection or other byproducts of a very serious condition that could have been causing this problem. All the liver experts got together with one of Cody's doctors. They have come to the conclusion that this problem was drug induced. Meaning, there was something Cody has been taking that has put his liver in this condition. We all think it was the Beta Glucan that he had to drink before his 3f8 treatments. That being said Dr. Gonzales has found a chemo drug that Cody has had before and he tolerated it pretty well. This drug is activated in the liver but processed out of the body through the kidneys. This is ideal. He will start chemo treatment next Wednesday. He will get the first infusion at the clinic and then he will be able to get the rest at home. After 3 weeks he will have a new set of scans and we will determine how the beast is responding to the treatment.

Now lets look at the bigger picture here. Between all the scans, liver biopsy and bone marrow biopsy this is what we know. Cody has no trace of neuroblastoma in his liver or any other organ in his body. They have found traces in both legs and in his pelvic bone. This is a very critical stage. He must begin chemo to stop the advance of the beast. Everyday that goes by this disease is multiplying and growing.

The future does not look good for our boy. I know the track record of this disease and I've seen others at this point in their treatment. I have not given up hope but hope is now dwindling. We are running out of options for treatment. There is no silver bullet or cure in sight. We are now at a point when we ask ourselves and the doctors "when do we just let Cody enjoy the time he has and let him be a little boy." I want him to have time without being pocked and subjecting him to all the medicine and procedures. I want him to physically be able to enjoy life without struggling.

This is a very hard time. Please excuse me if I don't post everyday.

I thank you all very much for checking in and praying for Cody. Please continue...

Hey all...

Well it was a very long day. Cody was suppose to have an MRI at 10:15. Well, it didn't happen until 12:00. That being said, Cody did very good waiting to start. His MRI today was for the head and abdominal area that they didn't get to on Friday. The preliminary results are that they look clean. As for the MRI that was taken of his legs last Friday, they have just given us mixed messages. In fact, the two soft tissue spots that showed up twice on the MIBG scan didn't show up at all on the MRI. Personally I don't put much stock in any single test. I look at it this way, "something is going on in his legs." It may be cells that have just not totally come together to form a tumor per say.

After Cody finished his two hour MRI today they took him up to the PICU and did a bone marrow biopsy. In all, Cody was under sedation for over 3 hours. He was scheduled to have his radiation @ 3pm and we didn't get down there until 3:45. To say that this part of the day was rough would be an understatement. He had to be restrained with straps and tape to get him to lay still. The fact that his MRI got pushed back almost 2 hours didn't help much. This is not our first rodeo so you think it would be easier but it isn't. It pushes your patience and it makes it hard not to lose your temper. I know these things happen but it doesn't help.

So here is what we are doing now. He will get 8 more radiation sessions on the bone lesion. As far as the other two mystery spots, the Dr that is in charge of the radiation treatment believes that there is something there and he wants to do a procedure called Cyber Knife on them. First we have to find out if our insurance will cover it. Then there are other issues like the fusion of the growth plates. The growth plates are at the end of the bones and it is exactly as it sounds. This is where the growth of the bone takes place. If there is fusion on the growth plate of one leg that means that leg could potentially end up shorter than the other leg. At this point I hope that is all we have to worry about in the future. As for chemo, his liver still has to get back to normal before it can be started. He started a round of antibiotics to help with that process.



Here is a picture from the Pizza Party. Do you think they like pizza?



Cody right after the Steeler game Sunday..

Thanks for reading...

Late night..

Diane and Cody got home about 9:30 last night. She said that despite the marathon day Cody did fantastic. When they came through the door he shouted "you've got to work on this really big one!" What he was talking about was a big LEGO pirate boat. That was his prize for doing so incredibly well. Needless to say we were up until 11:30 working on it and I will finish it after I get done with this post.

So yesterday went like this. Cody had an ultra sound of his liver. From what they looked at he still has no obstructions. His liver numbers continue to rise and are becoming a concern because we cannot start chemo until that is resolved. The doctor put him on a medicine that is supposed to stimulate his liver. If things don't turnaround by Monday I think they will use an antibiotic. Cody also had an MRI on his legs only. That is all they could fit in yesterday. The procedure took twice as long because he doesn't have very much meat on his legs. I guess it takes longer to get good images when there is less flesh. He will go in with Diane on Monday to start setup for radiation and get his first radiation treatment. Tuesday, I will take him in for his second treatment and he will have an MRI of his abdominal area and his head. This will be used as kind of a baseline. Wednesday she will take him in for his 3rd treatment and so on. For a total of 9 treatments.

Even though yesterday was extremely frustrating it was made 100% better because he handled it so well. We have no choice but to mobilize against this thing and get things done. We waited for weeks to get moving and lost valuable time so now it is time to get it on.

We will enjoy our weekend with the kids. I'm going to go out and buy all the stuff needed for the kids to make their own pizzas. They will enjoy that and maybe it will get Cody interested in eating....

Have a great weekend and "Go Steelers!"

8pm and no word yet...

I talked to Diane at 7pm and she said that Cody was still in the MRI room. This means that he has not eaten all day. It will be 9pm at least before he eats something. It makes me so angry but we really have no choice. Cody has to get this done ASAP because we want to start the radiation treatments on Monday. How insane is all of this?

Here we go....

Today's MIBG confirmed that all 3 spots are neuroblastoma. The original one is in the bone and the 2 new ones are soft tissue lesions. This really doesn't change the treatment. He will be getting radiation in those areas. It will be 9 days of treatment. Cody's liver is starting to act up again. His numbers are rising and they cannot start chemo until they are normal. The 'liver team' suspects that it is being caused by the beta glucan that was used with the monoclonal antibodies treatment in NY. His liver numbers had almost recovered and now that are going crazy again. They are still working on getting an MRI slot (with sedation) for tomorrow. They would like an MRI specifically looking at the bile ducts in his liver, an MRI of his legs (for the radiologist to get 'cleaner' film for targeting) and an MRI of the Head. I think they want to be sure it is clean as neuroblastoma often relapses to the brain/spinal cord (central nervous system). They are going to try a liver drug on him to try and 'kick start' it. The Doctor just called it in so Diane is going to get it.

So there you have it. Cody is taking it all in stride. He wants to kick the bug's butt. He is ready. As for Diane and me, we will do what it takes.

I will close with this thought. The first time Cody was rid of the beast it was gone for over a year from the last chemo treatment. This time it has been 4 months. Does this tell you something? It tells us that the only chance our son has for survival is that we need a cure for neuroblastoma. This desease does not give up... It becomes harder and harder to stomp it out....

Thank you for reading...

What next?

It's 6:30 pm, Diane just called and told me that her car just broke down on the VA side of the Key Bridge. So now she and Cody are waiting for the tow truck to come and get them. Unreal...


As far as and update on Cody. They just completed a 360 degree scan of his abdominal area. I'm happy to report that nothing showed up there. Now for the legs... I told you that the spot in question did show positive. There were two more tiny spots that came up on his legs. The doctor believes that it is actually urine spots that were on Cody's pants. The nuclear dye leaves his body through his urine so when Cody emptied his bladder before the scans they think that some may have got on his pants. I will take him in tomorrow for a rescan. We hope this will not show those spots. I will get into the future treatment when I do tomorrow's post.

Thank you for your prayers...

Bad news...

Well, I so hoped that I would not be typing this right now but the spot on Cody's leg is the beast. The MIBG has confirmed our worst nightmare. More spots have showed up on both legs and they are getting ready to do a 360 degree scan of his legs. This is devastating!!!

Well, today is another big day...

Cody will get his MIBG scan @ 2pm. Diane will be taking him in so it will be my turn to wait by the phone. As best as I can say I will be posting what I know around 4pm or so.

I took him in for his injection yesterday and things went very smooth. We were in and out in about an hour. That has to be a record.

I'm still holding out hope that this is an infection or something else. I did talk with the doctor a little while yesterday. Dr. Abu-Gosh is out of the country right now so Dr. Gonzalez is taking over Cody's treatment until she returns. One of the things that made this week so hard to deal with is the fact that we feel like a week was wasted. If it were not for the holidays we probably could have had this scan last week. Thus we could have started what treatment needs to be done a week ago. There is always the anxiety that the more time that passes is time wasted. God forbid, but if it is the beast one week can make a big difference. No matter what this turns out to be one good thing is that it is not around a vital organ like the liver. That area should be very treatable.

Something I have learned over the past 4 years is patience. You spend so many minutes, hours, days, weeks and months waiting. We wait for results of test and scans. We wait for meds to kick in. We wait blood levels to go back to normal. We wait for doctors to call. We wait for the last bag of chemo to finish. We wait for hair to grow back. We wait in traffic going to and from the hospital. We wait for 5 years of NED (no evidence of disease) to pass. We pray and wait for a cure! So here we are, waiting....

I'll post as soon as I hear something....

Thanks for reading....

Just a quick note...

I know that many of you check in multiple times a day. I just want to let you know what is going on this week. I will take Cody in for his injection tomorrow afternoon. Then he goes in with Diane on Wednesday for his MIBG.

This has been a very rough 4 days since the last scan. Diane and I are struggling to keep our composure and like I mentioned the other day, "keep the dishes spinning." The kids go back to school today which I am happy for. Justin and Daniela need to get back in the swing. We have decided to keep Cody at home because of his leg. He is also becoming very irritable. It is a very tough time right now. Dealing with the beast makes everything else that much harder to deal with.

Please pray for my family.... We need it now more than ever....

Stress.......

"A mentally or emotionally disruptive or upsetting condition occurring in response to adverse external influences and capable of affecting physical health, usually characterized by increased heart rate, a rise in blood pressure, muscular tension, irritability, and depression."

We don't really need to look up the definition of this word to know what it is. To tell you the truth I can't remember what it's like to live without it. At times it's like having a someone sitting on my chest and I just can't take a deep breath. Other times I just can't seem to completely focus on the task at hand or on what someone is saying to me. Oh how I long for the days of only worrying about deadlines, meetings, running a faster mile, cutting the grass, shoveling the snow from the driveway or what's for dinner. Now those are all welcome distractions from a living hell. As much as I try to totally enjoy the time I have with my kids there is always fear or anxiety of what may be around the corner. As I look at the very complicated dynamics of my family, I kinda see it like one of those performers. You know, the guy that has 20 glass dishes spinning on long sticks. He is constantly working to keep them spinning. If he can't keep all of them going they will come crashing down. Well, in many ways that is the way I see my family. "God forbid" but if things don't turn out the way we all want them to, our lives are going to be a complete mess. The relationship that my family shares is very complicated. I look at Justin and Daniela and I see that they both deserve more. Not material things. They deserve more time with Diane and I. They deserve more of our patience and understanding. But try as we might, I just don't feel like we are getting it done. I know that we are doing all we can do right now but I just don't feel like it is enough. As far as Cody goes, what can I say that I haven't already said. He deserves so much more. He has never really been able to just be a kid. He has endured more than most of us will go through in a lifetime. I don't know if there is any other way to handle him. We spoil him but yet he is subjected to unspeakable things. There are times that I feel I should be more strict with him while at the same time I feel like I'm too hard on him. Diane and I understand how he has to be dealt with but the kids don't. They can never win. If Cody wants to play a game then he raises cane until someone plays with him. If he wants to play by his rules then that is the way it is. Diane and I understand that he needs to have some kind of control in his life. Unfortunately the kids don't quite understand. They just see Cody as being spoiled, being hard to get along with and always getting his way. Through it all, they truly do love him and know that he loves them. Although they have a good idea of what is going on here, I don't think they know how fragile this situation really is. They see Diane crying, they hear us whispering and they overhear the conversations with the doctors on the phone. I feel so bad for them. With these past couple of years and what potentially could happen in the future I see many years of therapy and counseling in their future.

Diane and I handle this stress in very different ways. It grabs her and doesn't let go. She has a hard time keeping it all inside. At times it overwhelms her and comes spilling out. Me on the other hand, I tend to try and not focus so hard on the potential bad things. It doesn't mean that I don't worry about it. It really makes my heart ache to think about it. So as part of my self protective mechanism I focus on other things. I guess time will tell what was the best way to deal with all of this. Right now all I can do is spin dishes and hope they don't all come crashing down.

Thanks for reading....