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....