A very nice weekend...

I picked the kids up this afternoon from camp. They both looked very tired and said they had a great time. We have signed up for the family weekend in 3 weeks. We also signed Justin and Daniela up for a week long camp down in Leonard's MD. Justin said he had a very good time.

Cody, Diane and I went out to watch "Horton Hears a Who." It wasn't that good really but Cody liked it. That's all that matters.

I had a good friend donate $250 to BOP in response to the $500 match offer. Thank you very much...

There is not much to report when things are going good. One thing that is a little concerning to Diane and I is that Cody's appetite has really dwindled of late. We think that it may be the antibiotic he is on. He only has to take it 2 more days. If he doesn't start eating soon after he will have to get a feeding tube in his nose...

Looking forward to a nice weekend....

Justin and Daniela will be heading to camp tonight and will be there until we pick them up on Sunday. Sooooo, that leaves Diane, Cody and me this weekend. I know that Diane already planned on taking him to see "Horton Hears A Who." Hopefully the weather isn't too cold so we can get outside.

Cody has 3 things scheduled for next Tuesday. He will be getting his breathing treatment, his immune booster and also an ultra sound. It will be a long day and he can't eat for 6 hours before the ultra sound. Diane received the results of the pathology report that was done on the section of liver that was removed. They said that the 3 tumors tested positive for neuroblastoma. Now we definitely need to do cleanup with further treatments. This cancer is pure evil. Once it shows itself in a child, it is so very hard to get out. Cody has 3 more weeks before we can begin any kind of treatments.

I've had the privilege of corresponding with a very generous person who joined Cody's Crew. He had some very good ideas for fund raising that I will be considering. One idea was drawing some Christmas cards and give the profits to "BOP" Band of Parents. I think I may do that one.
A challenge is issued!!!
Another idea he had is that he would match the next $500 dollars that is donated to BOP in Cody's name. It does not have to be one person doing this either. It can be the total that is collected for BOP. I do ask with these donations that you go directly to BOP's site to make this donation. Just ask that they notify me of your donation. That way you can get the proper paper work to make your donation tax deductible. All that gentleman and his wife ask is to remain anonymous.

Yesterday was a pretty good day..

Yesterday was a typical Virginia spring day. With sun and temps in the lower 70's, it was a chance for the kids to get out after school. I even let Cody play out on the deck a couple of hours before the others got home. The start to his day was not so good. While I was on the phone Cody got out of bed and sat on the couch in the living room then proceeded to throw up. Diane had mentioned that she felt bad the night before so whatever it was didn't last long. He didn't have a fever and after he made the big mess on the couch he was fine. He didn't eat much yesterday and I wasn't going push it.

Justin and Daniela have a big weekend ahead. They are going to a camp for siblings of cancer patients. Daniela has been talking about it for weeks. She is marking the days off the calender. Justin on the other hand is not so sure. He does not do well being away from home. In fact, the last few times he was going to stay at a friend's house overnight he called and wanted to come home. This will be a little easier for him I hope. With Daniela being there also, I hope he will feel more comfortable. One problem is if he doesn't do well it is a long drive to go pick him up. This may be a tough love weekend for Justin.

Cody's crew has grown quite large. The bracelets have been a huge success. I've shipped out many packages over the past two weeks and continue to get orders. If this keeps up I'll be sending in another order myself. Thanks to all of you....

At this time I would like to ask that you mention a special someone in your prayers. Her name is Kimberley Geisler. She is the daughter of our good friends Mary and Tony. Kimberley is going through many difficult medical issues and her prognoses doesn't look good. Please drop by her Caringbridge site Kimberley and drop her a note. Mary has always been so supportive of us while we are dealing with Cody's issues. God Bless you Kimmy.

A pretty good couple of days..

Well things are starting to settle down again after getting home on Saturday. The kids were just about down from their candy high from Easter when my oldest daughter Corie brought them a bunch of candy last night. I think I ate most of it... Urrrr.....
Cody is healing nicely from his surgery. I don't know if I mentioned it before but they didn't use stitches on the outside of his body to close the skin. They used glue to close it and didn't even have a dressing on it. His hair is starting to grow back now and his head is like a big peach. I can't help but rub it every time I walk by him. Diane will be taking him into clinic today for a checkup. We have 3 more weeks off before we move on. I'm real sure what the next step is but I will keep you all posted.

Thank you all for the prayers.... Please keep it up....

A note to our Australian friend, "Please drop me an email and say hello." I've noticed that you check in regularly and I'm just curious. mickdee66@comcast.net

Easter Pictures

Here are a few pictures from yesterday's egg hunt....

Happy Easter!!!!

At this special time of year we would like to wish all of you a very joyous and special holiday. Enjoy your time with your loved ones and thank God everyday for what you have. Just remember, "these are the good old days."

Happy Easter from the Johnson family!!!

Home again.....

We got our walking papers about 9 a.m. this morning. Cody is playing with Justin and it's just nice to be home. All Cody could talk about last night was the Easter Bunny. In case something came up I just wanted to reassure him that the Easter Bunny was going to be at the hospital tonight also. Just in case we didn't get out.

That's all folks!!!!

A coupl of pictures

Here is Linda and Daniela.



Cody and Justin playing ball with one of the Lacrosse players.



A little friend outside the kitchen window this morning.



A little Justin artwork.



The team helping the kids decorate cookies. Cody is into it.



Mmmmmmm!



Cody did these himself. I think he did a pretty good job...



Justin has a new friend.

Maybe today or tomorrow..

I'm waiting to hear from Diane. She spent the night with Cody and will let me know if and when he will be coming home. The new antibiotics that they are using on him seem to be helping. He never did have a fever (knock on wood) so he has that going for him. His bad mood seems to have got better yesterday also.

The Georgetown Lacrosse team stopped by the hospital to do an Easter egg hunt with the kids. I have some pictures and will post them a little later today.

I sent out the first batch of bracelets on Wednesday and notified those of you who I sent them to. I have a few more batches going out today. I thank you all for the response and I will continue to order them as long as the interest is there. Thanks again...

All good things must come to an end...

Well, I knew when I got home this afternoon that I was going to have to take Cody to clinic tomorrow. But, it caught me off guard when we received a phone call about 9pm this evening telling us that we had to bring Cody in ASAP. It turns out that he has more of an infection in his line that we didn't know about. So, hopefully with the right antibiotics on board we will be out in a couple of days. Pour guy just can't get a break. I'm so proud of him. He didn't even really complain when we told him he had to go in. In fact, I took it harder than he did. I just want some time on a regular schedule. Oh well, it's par for the coarse.

A few pictures....

Cody and Justin playing on the Wii....



Justin and Cody are best buddies most of the time..



Saturday walk over the Key Bridge.



A new pond to enjoy. This was a very nice time...



Cody and Mom enjoying a movie together..



Daniela enjoying crafts with the girls on Monday...

Back Home!

We got back home about 10:30 last night. The doctor was to remove Cody's drain tube yesterday and was in surgery until 9:00 pm. It was a very long day but the kids were very well behaved. Linda, who is the Child Life lady at the hospital did a wonderful job keeping the kids busy. Thank you Linda! They played games and did crafts so it made the day seem a little shorter.

The doctor came up to remove Cody's tube a little after 9:00. He took the dressing off, cut the stitch that held the tube in and slid it right out. The removal of the dressing hurt more than the removal itself but Cody handled it like a champ. He cried for a few minutes but was laughing with his brother soon there after. I have to take him back to the clinic this morning for blood work but we will be coming right back home. The kids are out of school this week for spring break so he will have plenty to do.

I'm going to work on getting the bracelets bagged and ready to go today also. I will go ahead and ship them and let you know by email what the cost is.

I'll post some pictures later today...

I will be getting the first batch of bracelets out tomorrow. Get your orders into me if you haven't already.

The gang is all here...

Since we couldn't get Cody home today we decided to do the next best thing. I went home and picked up Justin and Diane's mother brought Daniela in. They are going to sleep with me tonight at the hotel. We are watching a movie in Cody's room tonight and it's kinda like being home....

Cody went 24 hours without pain meds today. They stepped him down from Oxycodone to Tylenol w/ Codeine. He did very well but late this afternoon he was a little out of sorts so I made him take Tylenol. He is now sitting in bed with Daniela watching "Night at the Museum."

We are still on track to go home tomorrow. It will be so nice to sleep in our own bed.

I'd like to say a special "hello and get well soon" to Megan. She is the daughter of Bruce "BGrunner" from Runners World. Megan is going through chemo also.

I hope to upload the pictures of yesterdays walk when we get home tomorrow...

Here till Monday..

We found out this morning that Cody will stay here until Monday. It's not that he had a set back, it's just that they are trying to find the right combination of antibiotics to clear the infection in his line. The company that delivers home meds isn't open on Sunday so we wouldn't be able to leave until late Sunday evening and we would have to be back on Monday morning anyway. He will be getting his drain taken out Monday also. He has a drain in his tummy that lets the fluid and blood from his operation come out into a clear rubber ball. This gives them a good indication how the liver is healing. It was pretty red the first day and has gotten clearer and clearer everyday. Today there is very little blood if any draining into the ball.

Diane went home today to get a change of clothes and some odds and ends. While she was gone we were moved from the PICU side to our regular side. I also put him in the wagon and we took the same route that I would run. I pulled him down through Georgetown and over to the Key Bridge. He didn't want to go over the bridge the whole way but we did get some good pictures. I'll post them if I ever get home.. :D

I'll be sure to get bracelets out to all of you who ordered them in the coming week. I thank you for the outstanding response.

Continues to amaze..

Our little man just keeps on keepin on. He is moving around like nobodies business. He got up at 7:30 and is just now going to sleep at 10:05. He's been up and walking, playing Monopoly with his girls, playing ball with us and he went over to the restaurant with Diane and I. Although he didn't eat much he road over in the wagon and was great company. The drugs he has been on are having a big affect on him. He's having more ups and downs than a Merry-Go-Round.

His numbers continue to head in the right direction. He needs to eat and drink a little more but that is coming. He also had a culture growing from one of his lines this morning. That means antibiotics. Despite that there is a good chance that we may get to go home this weekend. We are cautiously optimistic. Cross you fingers!!!!

I have said it before and I say it till my last day in this world, "Cody is my hero and the toughest human being I know."

Thanks to all of you for the prayers and thoughts...

Cody's 'numbers' have started to level off and little by little more tubing gets removed. They will watch them closely over the next few days to make sure they stay in the right direction. We are praying for an 'out of the woods - thumbs up' by Saturday or Sunday. He spiked another fever overnight so they are starting an antibiotic. Cody also has fluid on his right lung so the Doctors have him on respiratory treatment and want him moving around as much as possible. This is very hard for Cody. His incision is about 9 inches long. Dr. Fishbein ended up taking out about 85% of Cody's liver, his lymph nodes in the surrounding area, and his gall bladder. The most we were able to do is get him to sit in our laps a couple of times and even this didn't go over so well. Physical therapy will attempt to get him standing tomorrow. We have warned them to watch out for flying fists! He made contact with the x-ray lady this morning. Cody is a bear when he doesn't feel good. The Doctors, nurses, and staff have been incredible as usual.

Evening Update...

Cody is hanging in there. He was awake for most of the day and watching TV. His fever had broke this morning but is creeping up again. The 'numbers' that need to go down to show that his remaining liver is functioning are still climbing. They are hoping to see that trend change by tomorrow afternoon at the latest.

I was able to get him out of bed for awhile and he sat with me in a chair beside the bed. We did have a little mishap this afternoon. He is on Fentanyl for pain which is doing a very good job. But,,,,, it is also making him itch. He is scratching all over. So, they gave him a very small dose of Narkcan (something) that is used to reverse the affects of overdose patients. Well it worked so good it canceled out the Fentanyl and Cody immediately was in very bad pain. Lotion is now the way we will be treating the itching until his liver is ready for other drugs.

We will keep you all posted. Please keep praying.

Early report.....

We just talked to the surgeon. He said things went as good as they possibly could. There was very little bleeding. He also said that the early tests on tissue that he removed showed no signs of active cancer. The new spot that showed up on the scans didn't test for cancer cells either. He found no other visual evidence of cancer besides the liver area. Now keep in mind that these are very early test and the stuff that was removed must go to pathology before we will know for sure. The surgeon was very happy with the way things went. We will know more in the next couple days but we are heading in the right direction.

Please keep praying!!!!

He is up in the PICU now. He did so well that they took him off the ventilator and removed the tube from his nose. He was awake a couple of times and the first thing he asked for was Jen and Linda because he wanted to play Monopoly.

I am so proud of him. He is the toughest human being I have ever met in my life.

Dr. Houser stopped in and he said that Cody is in much better shape than they could have imagined. I don't want to jinx him though. Diane will spend the night at the hotel across the street tonight and I will stay there tomorrow. We want to be close at this point.

Keep praying please, it is definitely working....

Good weekend and Big day ahead...

You all know that tomorrow is a huge day. I'm not sure when I will post. I'll try to get to a PC at the hospital sometime in the afternoon. Please pray for our boy...


We had a very nice weekend. Saturday evening we took the kids out to Outback for dinner. They really like going out to eat and they are actually getting better when we go out.





The bracelets are in.... I received them this morning. If you are interested in purchasing some please email me with the total and sizes you would like. They are $2 and all profits will go to Band of Parents. It may be a few days before I get back to you with the total cost of shipping. Here is my email... mickdee66@comcast.net



You want some of this?

Size	Large	Medium	Child
Length Around	8 3/8”	7 3/8”	5 7/8”
Width	0.5”	0.5”	0.4”
Thickness	0.08”	0.08”	0.08”

Here are the sizes. Be sure to check your measurements before ordering.

Some of my drawings....

Here are some of my drawings. Most are from years ago before my kids were born. The pirates are new. I took the drawings to Kinkos in hopes that they could make copies but they could only copy them to a PDF format which left the drawings very grainy. I will take them to a good print shop in the next few weeks. I took photos of them with my camera just to see what the look like. The pictures don't really do them justice.





Cal Ripken



Arab



Pirate1



Pirate2



Joe Montana



Shoe Shine Boy



Indian

Hope for a quiet weekend....

They are calling for rain most of the weekend. I wanted to take the family out to see 10,000 B.C. but it is getting sort of bad reviews. I'm not sure what we are going to do but we do want to enjoy this weekend. We are sort of restricted when it comes to kid activities. We have to be careful because of Cody's immune system shortcomings. Places like Chuck-E-Cheese are out of the question. Too many germs... Well I'm sure we will come up with something. I'll take a few pictures to post later.

My order has been shipped! I ordered the "Cody's Crew" bracelets last week. They shipped yesterday. Just as a heads up I will be selling them for $2 + shipping & handling. All profits will go to "Band of Parents". I wish there was a way I could handle the orders on line but it looks like I will have to use snail mail.

Once again we would like to thank each and everyone of you for your prayers and support. It's nice to know that people care.

Update...

Well we had our meeting with the surgeon and our Dr. this morning. Many of you may remember that I had talked to the surgeon before we went to NY. Unfortunately Diane couldn't make that meeting. I came away from that meeting feeling good about what he said. Today, we both had a chance to sit down and talk to him. I can't speak for Diane but I think she feels more confident that he gives Cody the best chance of getting through this. He seemed to have many of the right answers when asked by Diane. He explained that when he first starts the procedure he will explore many lymph nodes to see if there is any sign of tumors starting in other places. If there are signs that too much cancer is present in other places then he will probably won't proceed. Often times small tumors are present but they don't show up on the scans. It was agreed by all of us involved today that we proceed ASAP with the surgery. Cody will then have to wait about 6 weeks before he can have any other treatments such as chemo, radiation or antibody treatment. We will know in 4 to 5 days whether his liver is going to get through this. Again, the doctor says that Cody's liver is already showing signs of regenerating so he is fairly confident that this will work. He is, if not the best liver surgeon on the east coast, one of the best. Dr. Abu-Ghosh is comfortable with him so that goes a long way with Diane. We both trust Dr. Abu-Ghosh immensely.
So here it is. Cody goes in on Tuesday morning for surgery at Georgetown. He could be intubated for a couple of days after the procedure and have a feeding tube for a couple more days. It is essential that he gets the nutrition needed to help his liver heal.
Do we feel totally confident that this will go without a hitch? Of course not. This is a very complicated and risky surgery. But, we feel that we have the best person performing it and it is absolutely the right choice. Will Cody be cancer free after this? Probably not and he will have to endure more treatments when he is able. The cancer Cody has is one of the absolute worst childhood cancers known to man. We just pray that he gets more time and they find a cure before it possibly comes back. History says it probably will return. But one thing I can say, "this cancer doesn't know who it's messing with." "Our boy is one tough dude!"

It doesn't get any easier....

Well we are getting ready for a new chapter. The tests showed hot spots in the liver and lymph nodes surrounding the liver. MSKCC sees 100 relapse cases per year. We have been told that over the last 15 years there were only 3 children that had relapsed solely in the liver. One child's tumor was chemo resistant. The other two had 80% of their liver removed. The remaining 20% failed to regenerate. I guess that explains our NY Doctor's pessimism. Our Doctor here also said today that she thinks the new spot that showed up below the original large tumor is chemo resistant. They need to move swiftly. There are really no other viable options. Even if Cody went through more chemo or radiation they would still have to remove 80% of his liver due to the locations of the tumors. Besides the scare of the surgery and concern about the 20% regenerating itself we need the cancer to stay away during the whole regeneration time. Cody cannot be treated again until his liver is fully grown. We are meeting with the surgeon tomorrow@ 9am. He performs mostly transplants for which Cody will never be a candidate. It all seems to be upon us so fast.

A word from the Mrs.

Since all of you have taken the time to leave a message I thought I would 'invade Mickey's space' and write a little myself. I wanted to thank you all for checking on Cody and most importantly for keeping him in your prayers. Prayers pulled him through the first time and I have faith they can do it again. Our trip to New York was a bit depressing to say the least. Dr. Modak told us that although the initial treatment to a relapse in the liver is responsive - he said it 'almost always comes back.' He said it was 'one of the worst places for a relapse.' It's been hard to pull ourselves back up after our 'talk'. I wanted you all to know that it really helps to read your words of encouragement and to know that you all are praying for our little guy. Your words are read daily with tears in my eyes. Last week Cody said he wants to grow up to be 41. When I asked him why he answered 'because I want to be a daddy.' We took a walk down the road to my sisters house yesterday. Along the way we picked a plant that has the seed connected to soft white cotton threads - the things that blow in the air and you make wishes on them. Cody says 'you're not supposed to tell your wishes or they won't come true right?' After I agreed he said he wanted to tell me his wish anyway. He said 'I wished I would grow to be 10.' Although he may not really understand the differences in the numbers I think he is starting to pick up on things that are being said. In some ways this was easier when he was 2 and was just learning to talk. These moments just make my heart ache beyond anything imaginable. For those of you who don't know Cody he is extremely lovable and just as feisty. He already had several detentions during the short time he was in kindergarten. We are counting on his spunk and fight to see him through. He has surprised the Doctors before and we're praying he will do it again. Please keep the prayers coming his way - he needs you all very much. Thank you for everything!

No news yet....

Diane and I have both been waiting by the phone. We have heard nothing. I will keep you all abreast of any news...

Thank you all very much for giving us a shout. To all of you who know us personally, thank you for keeping us in your prayers. For those of you who know me from the RunnersWorld forum or have found this blog through the wonderful World Wide Web, thank you for taking the time to read and get to know us. We appreciate each and every one of you...

Who are you?

Many of you may have noticed the tracking device to the right of my blog page. It gives me a good idea who is checking in on Cody. I know many of you by name but there are many of you who I don't know. Please take a few minutes and say "hello" in a comment. Let me know where you are from. It means so much to Diane and I that you all care about our son. Please say "hello."

A few pictures....

Flying out of Dulles on Tuesday morning. The AOL & Time Warner people are awesome. When you always hear bad about big companies these stories never seem to get out. They do this all the time. Thank You!!!!



"Look Mommy, there is Nemo!" This is the fish tank at MSK, pediatric hematology floor. Cody loved the colorful fish. We have a fresh water tank and it doesn't come close with the colors of salt water fish.



This is Times Square. We all loved the lights. It will be much more enjoyable when it gets warmer. We enjoyed what time we had to get out. Of coarse, Cody would've just liked to stay in the room and beat on Dad. Ouch!!!


Out for dinner...




This is our room at the RM house. No frills but a very nice and clean place. They were very, very nice to us. Thank You!!!!!

I think we will be heading into Georgetown today. I seems that one of Cody's lines are clogged so we will have to get him in to unclog it. That could take all day. One hour into town. At least a couple to get his line fixed and then another hour to get home. We'll take it!!!!

Good Morning Everyone...

Well we got home last night. Yesterday was a very busy day. We didn't know for sure if we were going to get home yesterday. In fact, the kids were pleasantly surprised when Cody walked through the door. It was a great site seeing all three of them hugging. I should have taken a picture. :D

Cody had all of his procedures yesterday and we should know the results by Tuesday. All the doctors must have a pow-wow with our doctor down here and then we will discuss where we go from here. He was very sore from the bone marrow test. They take the marrow from two spots on the front and two from the back of the pelvis. He was upset that they put bandages on him. I think he believes the pain is being caused by the bandages. My guess is that he will be sore today also.

We had a wonderful time at Lion King on Thursday night. Cody loved it. If any of you have a chance to go see that show, we recommend it highly. Cody gives it two thumbs up. :D Thanks Jen! We enjoyed NY as much as we could in the winter. I think once it warms up it will be even better. There just seems like so much to see. One of the bad things about being there in the winter is that you have to take a taxi everywhere. It is just too damn cold.

I mentioned that I joined "Band of Parents" a few weeks ago. Here are two TV news links that show that awareness about Neuroblastma is starting to kick into gear. The Loneliest Road , once you click on the link, click on the green video tag to the right of the story and Band of Parents. We have a long way to go.

I will post a few pictures later.