Saturday, February 28, 2009

We're back....

Well, Cody and Mommy are at Georgetown and the kids and I are at home. I'll write more soon....

Saturday morning already.....

So it’s Saturday morning and the kids and I are the only ones up. We will be packing and getting stuff together as soon as Diane and Cody get up. We will be checking out around 1:30 and hope to get on the road by 2. We have to return the car to an off site car rental and take the shuttle bus to the airport. We will be taking a detour before we get home though. We will be dropping Cody and Diane at Georgetown. Dr. Abu-Gosh has a list of things that need to be done including IV hydration, new feeding tube, check blood and X-rays to check the growth of the beast. We’ve noticed that Cody’s breathing has become more labored now. He is breathing faster with more shallow breaths. I hope he doesn’t have to stay in the hospital too long.

At times this week seemed to go very slow and now that it’s almost over it seems to have gone by too quickly. Cody had a good morning yesterday and wanted to go to the game room. He played a game that has a light that goes round and round. You must hit the button at just the right time to have it stop on the red prize light. I think he played it about 100 times and won 6 times. It was the only thing he really wanted to do. He has enjoyed playing Webkinz with Chris this week. He just can’t do things that are physical anymore. His legs hurt him too much.

Once I get home and I can collect my thoughts I have a list of people to thank for this trip. It really has been a God send.

Thanks for reading…

Thursday, February 26, 2009

This is obviously not a vacation.....

It seems as though our little boy is slipping away from us. He is just not the same child. He no longer wants the kids or me around. Diane and Chris are who he wants to be with. He did allow me to play putt-putt with his gang today. I was able to pick him up and hold him a couple of times. I was even able to put my nose in his hair and smell him again. For those of you who have followed my blog a while you know that is one of my favorite things to do. There is something about a small child’s hair and their smell. It just makes me feel so close to him. I’ve missed it terribly. Throughout the game he worked very hard to walk from one hole to another. His limping is getting very bad and he is losing his muscle tone also. I’m not sure if the radiation worked. After he would get his ball in the hole he would sit down near the hole and wait for us to finish. He seemed to drift far away with a blank stare in his eyes. He doesn’t want you to speak to him unless he speaks to you first. He also does not like to repeat himself. It makes him so angry.


It appears that we will be leaving Saturday afternoon. I’m almost thinking that we need to get 3 seats away from their 3 seats just to keep the peace. I think we need to get home and be close to his doctors. There is a bit uneasiness about teetering on the edge of going to the hospital. I’m sure they have very good hospitals here but they are not Georgetown. The doctors are not his doctors.


Justin and Daniela seemed to be having a pretty good time. We’ve been trying hard to let them do as they please. Justin has met a boy and his brother who are from Vermont. They have spent the last 3 days together. Daniela has been playing with them and today she found another young boy to play with. I think I will rent bikes so we can ride down the road. I feel like the best I can do now is keep the other two kids away and everyone will be happy.


Thanks for reading…


Morning Update: Diane just woke up. She said that she and Cody were laying in bed last night and he told her that his tummy hurt and it feels like a Great White shark is biting him. She said that maybe you will feel better in the morning, he said "no I won't." It is really breaking her heart. She watches him at the pool or playing putt-putt and she says he is so depressed. He watches the other kids play and he knows he just can't do it. I believe Max's dad. The darkest days are yet to come. This is just heart breaking.

Wednesday, February 25, 2009

Update...

Yesterday was a much better day than Monday. We were awakened at 7:30 by Cody standing at the bedroom door saying “let’s go to the beach guys.” “Get up, I want to go to the beach.” So, with one eye open I helped Diane get the kids together as quickly as possible. With Cody, the last few days you have to seize the moment because the mood can do a 180 in seconds. We headed down to the beach and were able to have about 30 minutes of fun with Cody and the kids playing in the sand. I cannot say enough how he has changed. There just seems to be very little happiness in our little boy. He has only laughed a couple of times in the past few days.

We had some visitors yesterday. Diane’s father and his wife spend the winter months in Florida every year. They drove over from St. Pete which is on the Gulf Coast. Also my oldest son Mickey Jr. drove up from Tampa. Mickey hasn’t seen Cody since before he was sick 5.5 years ago. I also forgot to mention that my daughter Corie was able to get home from Guam on Saturday before we left.

Today I will be taking Daniela up the road for a ride on an air boat. It was originally set up for Cody but he wants nothing to do with it.

Cody had a temp of 101.6 last night. The magic number is 102. He will have to go to the ER if that happens. We are trying to move flight up to Saturday if possible. It is very touch and go right now. We really don’t want go to another hospital. Since Cody has made it to the beach already I guess we can leave at anytime. I’m not looking forward to the flight back. Although the people of Air-Tran were absolutely wonderful, just getting from here to there and keeping Cody happy is not an easy task. He is hard of the other kids.

Monday, February 23, 2009

We are here for now......

Although it was a very stressful trip, we are here. It is 12:30 and Cody is still sleeping. We are going to let him do what he wants to do.

The day started with a stretch limo ride to the airport from our house. The kids absolutely love riding in a limo. Cody at one time said he loves riding in a limo more than being at the beach. He later took that statement back. :) The limo ride was nice but rough. Cody was in a terrible mood and most of the trip didn't want anyone to speak. As we started through the security line Cody got sick to the stomach. Right before we were to go through the x-ray machine he had to throw up. I picked him up and held him over the trash can. Well, not only did he throw up but in the process the feeding tube that goes from his nose to his stomach came out of his mouth. This was very traumatic for him and most of the people standing in line. I hurried and pull the tube from his nose and out all together. He was very upset. We cleaned up and headed for the plane. We were not going to let that stop us. He will have to have a new one put in the next few days.

When we arrived at the hotel it was chilly but the kids were not going to let that stop them from going to the pool. We hadn’t eaten most of the day so were all hungry but we let the kids get dressed and headed over to the pool. The kids loved it. Cody was like his old self as soon as he hit the water. He was doing his best to do the free style stroke. He is actually a very good swimmer for only watching Justin and Daniela. So he stayed in the pool for about 15 minutes and then wanted out because he was getting cold. We left the other kids with Chris and headed back to the room. Cody and I jumped in the big Jacuzzi tube and warmed up while playing with his little monster guys. We had a great time. After the kids got back we ate pizza and veggies, and tried our best to keep him happy. The kids are doing their best to keep him happy.

2:28pm, Cody was able to get enough energy to get outside. We were heading to the beach but to do that you have to walk past the pool. He saw all the kids in the pool and decided that’s where he wanted to go. He got in the pool and lasted for about 10 minutes. He was cold and wanted to play in the tube with me again. He hasn’t made it to the beach yet. I hope by this afternoon.

He is very lethargic today. We had to give him some morphine because his tummy is hurting him. We were able to get to Walmart for goggles and beach toys. I pray that we are able to get him down there to enjoy them. He is just not the same boy. We miss our Cody!!!

Sunday, February 22, 2009

The hardest thing I have ever had to do....

I knew I was going down to the hospital to sign some papers when I took Cody in yesterday. I even had a good idea what papers I was going to sign. Besides the authorization of Cody's medical records to be given to another hospital if necessary I had to do the unthinkable. I had to fill out "Do Not Resuscitate" papers for my son.Diane had spoken with the Dr. before I left for the hospital and the Dr. told here that she was going to have the papers ready to sign. You can never be prepared for that. The Dr. hopes that they will not be needed down there but we have to be prepared for the worse. With every stroke of the pen it was all I could do to see as my eyes were welling up. This is just not the way it is suppose to be.

So all the plans are in place, the cloths are packed and we are ready to go. We just hope that Cody can enjoy this trip for the whole week. Yesterday's visit to the hospital turned out to be much longer than we expected. He was scheduled to get plasma which we knew about. Then some of his liver numbers can back pretty bad. Cody has been complaining of a tummy ache the past few days. We didn't know if he was constipated from the morphine or what was going on. It turns out that he may have an infection in his liver. It is very swollen and has been bothering him most of the day and night. Up until now it was just his bilirubin numbers that were out of wack. But now they are all heading in the wrong direction. So, he was given two IV antibiotics before we left which he will have to be given our whole trip. We pray that it works because as it stands now we don't know what will give out first, his lungs or liver. He may not make it the full week.

Our little boy is slipping away from us right before our eyes. He no longer wants to wrestle with his brother or Chris. He just doesn't have it. He is very irritable and is so hard on Justin and Daniela although I'm sure he doesn't mean to be. Every once in a while there is a ray of light that shines through those dark clouds when he starts to laugh. Yesterday Justin went with us to the hospital. They were laying in the bed together while Cody was getting his infusion and Cody said something that made Justin laugh while he had a mouth full of soda. Justin could hardly keep from spitting the soda out all over the room. Well this made Cody laugh so hard. It almost made me cry to see them like that. I couldn't help but think that we will be so removed from those kind of moments in the days to come.

The doctors have been so helpful in getting us prepared for this trip. Dr. Abu-Gosh has been the best. She has been with Cody since the day he was first diagnosed 4 1/2 years ago. She is family. She has contacted the cancer center down in Orlando and the hospital down in Vero Beach where we are going. She has sent all of Cody's medical info to each of them so they will be ready just in case we have to go.

Friday, February 20, 2009

Thank you all!!!

Thank all of you for the outpouring of support and prayers. We are truly humbled. The past two days have gone bye at quite a clip. Thank all of you for offers of places to stay and transportation. We have been blessed with good friends that have set us up. I will not divulge anymore until I ask if they don't mind me mentioning it. We will be heading out by plane on Sunday and coming home in 8 days. That's right, plane. Diane wasn't too thrilled about an 18 hour train ride. At least not this time.

I'd like to share a couple of photos with you that I took today before we went to Georgetown.



Mommy and Cody tickling each other.



Watching Sponge Bob...

Wednesday, February 18, 2009

No way to prepare for this....

Well, our hospital visit could not have gotten much worse today. The results of Cody's CT scan was much worse than we thought possible. His little lungs are 50% covered with cancer. He is also showing spots in his liver. To use the word devastated would be a major understatement. The doctor couldn't tell us how much time we had but with the progression of the beast from the scan 3 weeks ago to today she thinks it could be 2 weeks to 2 months. He will start getting short of breath as this progresses. She said that they can keep him comfortable and he will have to go on oxygen when the time comes. There is basically no way we can treat him now other than to do a little more radiation on his legs to relieve the pain. She is going to ask the radiation Dr. if there is any way to treat his lungs but she doesn't believe there is.

So, we are now planning on leaving for the beach this coming Monday. We are going to go as far south as the train will take us. We will deal with the plans in the next few days. Cody was suppose to get radiation on his legs through next week but the doctor says that we need to go to the beach now. Cyber Knife is no longer a concern. We are no longer pursuing that treatment. We are now in memory making overdrive mode.

We have decided that we are not going to tell the kids until we absolutely have to. We don't need anymore people worrying than we already have. As far as Cody goes, we are just going to keep him as happy and comfortable as possible. I wish there was better news to report but there unfortunately is not.

Thank you all for the prayers.....

Tuesday, February 17, 2009

Yesterday...

I think it was the most stressful day of my life. The accumulation of worrying about Cody, worrying about Diane and worrying about Justin and Daniela mixed with Cody's volatile reactions to everything is almost more than I can handle. It is hard but I have to keep reminding myself that this is all about what Cody is going through and not anything else. I have to stay focused.

Cody made it through about half of his examination yesterday before he said "no more." He didn't want Dr. Abu-Gosh to look at the new bump in his groin area. It was about 10 minutes before he had to go get his last radiation treatment on his chest when it was decided to give him some morphine to see if it would help. So we gave it to him right before we headed downstairs for the treatment and within 15 minutes it took effect. He was a completely different child. It is just as we suspected, all of his changes in personality are being caused by pain. So the Dr. has now prescribed morphine for Cody in hopes of making his days a little better. There is one problem with the morphine though. He seems to have emotional swings that just add to all of the stress. I would tell anyone, "you do not want to be around the Johnson household right now."

Cody will start radiation on his legs today. The doctor is going to try his best at using the conventional radiation without damaging his growth plates in his legs. We simply cannot wait for the Cyber Knife issue to be resolved. The pain in Cody's legs combined with the pain he will be feeling for the next week from the radiation to his chest is why he is acting this way. If Cyber Knife is approved then they can switch.

Tomorrow is a very big day. He will get a CT scan that will tell us how fast the beast is advancing. Dr. Abu-Gosh was pretty sure that the new lump in his lymph node is neuroblastoma and it is not a good sign. We are not going to make any plans for trips or anything else until after we see the scans. Cody's liver continues to do poorly when it comes to moving the bilirubin out of his system. In Dr. Abu-Gosh's own words, "our hands are tied as far as treatment goes unless his liver turns around." She also said that any experimental treatments are out of the question because of his liver and the risk involved.

The beast has us backed into a corner right now. Cody continues to fight but I wish I could take all of this away from him. Although they don't say it, I think the kids know that this is not going very well. They see their brother getting worse and worse. They see Diane and me losing control of the situation. I don't have any idea how we are going to explain this to Cody or Justin and Daniela. I don't have a clue how we can put it into words.

Thank all of you who have offered ideas for our trip to the beach. I will give you an answer when we have a better idea where Cody stands and his treatment. Thank all of you for your prayers and continued support. The dinners, the gifts, the cards all mean so much to us. The offers to help with Justin and Daniela have made their lives a little better and that means the world right now. Although the past 4 years have been hard we know it's going to get worse before it gets better and without your help we would all most certainly be in the nut house.

Bless you all!!!!

Saturday, February 14, 2009

Prayers needed!!!!!

What was suppose to be an uneventful weekend has started out in a bad way. Last night when going to bed Cody told Diane that his groin area hurt. It turns out that the gland on the right side of his groin is swollen pretty bad and is hurting him. Diane called the Dr. and I was getting ready to take him in to Georgetown. But, the doctor said we didn't need to come in unless he has a fever. If he has a fever it is possible that it's an infection. The fact that she has told us to enjoy the weekend and she will see us Monday speaks volumes. I spoke to her for a little while and asked her what she thought was going on and she believes it's the beast. We hope and pray that it isn't. I asked her if we are at the cross roads now and she believes we are. Cody's liver is not well, so we can't continue chemo. The half dose of chemo he had a few weeks ago appear to have no effect on the neuroblastoma. With the apparent progress of the beast in his lungs, bones, esophagus and groin the prognoses is not good. If Diane is up to it we will all go in to Georgetown on Monday. It appears that "the talk" is now inevitable.

Cody has been extremely irritable the past few days. We believe he is in pain and that is his way of expressing it. He just can't help it. I think we will be putting him on morphine soon.

Cody has been saving his money from the sale of candy to go to the beach. Most of you know that he has always loved the beach. It appears that we will be going soon. I think we will be heading South for the warm weather. I will be talking with the doctor about a gap in his radiation treatment to find a good time for the trip.

Diane is a wreck and I'm numb. This is a day that we have not wanted to come. It's the day when it all seems to smack you right in the face.

Please, please, please pray for Cody....

Corie, I will have the doctor get in touch with the Red Cross on Monday. Love you!

Friday, February 13, 2009

Not much.....

to report here. I will be taking Cody in for radiation today. His last treatment on his chest will be Monday. It was decided that we can no longer wait for word from the insurance company on the Cyber Knife issue. It seems that their word is final and/or nobody else cares to intervene or has no influence on the all mighty insurance companies. The doctor at radiation says he will try to use the regular treatment and hopes to minimize the damage to his growth plates. We will address the insurance company at a later date. Cody is our number one focus right now. As of yesterday his bilirubin numbers are still climbing but his other liver numbers are down slightly.

So, next week we continue radiation on the legs to try and stop the onslaught of the beast in his little legs and hopefully relieve some of the pain. On Wednesday he will have a CT scan on his torso and neck to see what affect the chemo had on those areas.

This weekend will be a special one. Tomorrow is Chris's 20th birthday and the kids and Diane are going to have a party for him. You all know how close he is to Cody and he is like one of our kids. Next year we'll be able to go out for a beer... :)

Justin crosses over from Webelos to Boy Scouts on Sunday. He has worked hard and stuck with it through the rough years and I am proud of him. It would have been much harder if it weren't for the support of the other pack parents. When I couldn't make it they made sure to pick him up on meeting nights and to other special trips. Again, proof that we have so much support during this time of need. Thank you all....

Wednesday, February 11, 2009

I wish.......

I had some good news to report. Cody's declining health continues to consume our every waking moments. I had a chance to speak with Diane a little while last night. She didn't really want to talk that much and was extremely tired after the day at the hospital. Cody had blood drawn, and had his radiation treatment to his chest while waiting for an opening at ultrasound. His liver numbers continue to climb and the doctors are very concerned. They are meeting with the liver specialists today to discuss his situation. Things are not looking good at all. He continues to turn yellow which at this point is almost tan. If his liver doesn't soon recover the toxins building up in his little body will poison him. His liver is now moving to the forefront of concern because we can't continue treatment of the cancer with the way things are going. He would've started chemo this week if it were not for his liver. Can you see where I'm going with this?

Last night, after Justin and Daniela went to bed I convinced Cody that he needed a bath. His little feet were starting to stink..... LOL He was eager to play with his boats and little guys. I went back out in the living room with Diane and we could hear him talking to himself while he was conquering the high seas with his little guys. We both looked at each other with a sense of helplessness and I said "you see, he just wants to be a little kid." Through all of this hell, that is all he wants. He wants to play games, read books, eat Big Macs and play with Justin and Chris. As I kissed her she asked me if I was praying. I said "yes, but not just for his healing. I'm praying that he doesn't hurt anymore and have to got through this crap anymore." Why does a little child have to go through this? I will never know the answer to that question.

This all seems to be taking a toll on Justin also. In the past year he was given a prescription for stomach issues. He hadn't been taking it for a couple of months but last night I notice an empty pack lying on the kitchen counter. So I went upstairs and asked if he was taking them again and he said "yes." He told me that his stomach has been hurting at night because he is worried about Cody. Over the past few weeks he seems to be getting into a little trouble on the bus and at school. I can't help but think that this is all linked together.

So, as we wait for word about Cyber Knife and Cody continues his radiation treatments. We pray for his liver to wakeup and start doing what livers do. We are also just trying to enjoy every day together, making memories and trying to keep it all together. In my mind I try to think past today and plan for the warm weather and things I would like to do with the kids and Diane. Through the hell of the past 4 years there has been some good that has come from it all. I feel it has made me a better man. I feel it has made me a better father and husband. I feel it has made me a more compassionate person. Life is a very strange journey. It kinda reminds me of some lyrics to the Eagles song "Waiting in the Weeds."


"The phases of the moon
The chambers of the heart
The egg and dart of small gray
Spiders spinning in the dark
In spite of all the times the web is torn apart"


We just keep going. Through all that life dishes out, we just keep doing what we do.

Monday, February 9, 2009

No News...

We haven't heard anything about the Cyber Knife yet today. I will let you all know as soon as I do.

If you get a chance, view the video to the right. I've wanted to put this together for a long time. I think it turned out OK. Let me know what you think.


Thanks for reading...

Sunday, February 8, 2009

Thank you all !!!!

I would like to take this time to thank all of you for your outpouring of love and support. The letters and suggestions that you have written on Cody's behalf have me speechless. That is really saying something... Moon, Mary and Norine your letters have touched our hearts and we can't thank you enough. Once again we have had neighbors, family, friends, teachers and even strangers help with dinners, and with Justin and Daniela. We thank you all. My family and I don't know where this journey is going to take us but I do know one thing, we are very blessed to have such family and friends in our lives. I would again like to mention that Diane and I are very blessed that we work for such compassionate companies that have been so understanding and supportive through these years. Without them our world would definitely come crashing down. They allow us to have some sort of normalcy in our lives while dealing with this terrible situation.

Just to let you all know where we stand with the whole Cyber Knife issue right now. I know that so many of you have sent letters and emails to Senator Colgan. We also had a letter drafted and hand delivered to Mr. Colgan yesterday. Diane's cousin was able to hand deliver the letter on Saturday. Mr. Colgan told them that he meets with the Commissioner of Insurance on Monday. How lucky was that timing? It remains to be seen how this will all play out but it is our best shot.

On Thursday Cody’s liver enzymes were still climbing. A few are related to the chemo he had received and a few are still a mystery. The Doctors are becoming very concerned that the liver has not turned around by now. One of his clotting factors was also on the rise which had been normal until now. We will have new blood work drawn on Tuesday as well as another ultra sound on his liver.

Thursday, February 5, 2009

They denied Cyber Knife....

I just received a phone call from Diane. The insurance company has denied the Cyber Knife procedure. Diane is having a letter drafted in hopes that we can get our Senator to sign it. If any of you know someone who may have some influence in this area please let us know. This is just insane.

Yesterday Diane had to carry Cody the whole time she was at the hospital. His left leg is really hurting him and he can put any weight on it. It is so hard to see him this way. It makes me want to cry. Through it all, he really doesn't complain. He just gets from point A to point B the best he can.

Thanks Mary,

Our Senator is James Colgan of Virginia. Here is a link to his page.


Tuesday, February 3, 2009

Back to our reality...

The Super Bowl was just that, Super. We had a great time and it was one of, if not the best Super Bowl I have ever seen. The kids had a great time. Diane had purchased some of those little streamer poppers that pop when you pull the string. I had a hard time getting them to save some for the end of the game. It's a little hard for me to post the pictures because Cody is so yellow. I guess I will just pick a couple good ones and post them anyway. We will find out today if his liver is better or worse. I would be surprised if it were better. He is just looking more yellow. It's starting to bother me a little that people are staring at him when we are out in public. I just feel so bad for him.

I took Cody in for radiation setup yesterday. He will start today and it should last 9 or 10 days. He had to get marks all over his legs and one right in the center of his upper chest. They use these as markers for the radiation. We are still having problems getting Cyber Knife approved by the insurance company. I wonder if one of the insurance executives would go through this if it was their loved ones that was in need of this procedure. I bet not!

I have a government security audit at work this week. It is always a stressful time. I've been talking to many of my associates and have been asked about Cody and how he is doing. It is becoming hard to talk about it. I know that people mean well but I have a hard time keeping it together when I'm talking about Cody.

I will post when I get any new information. Thank you for the prayers, well wishes and congrats on the Steelers win. My family and I appreciate the love and support.

Update:
Diane just called me and said that the insurance company approved the Cyber Knife procedure. The squeaky wheel gets the grease. She had been making calls and rattling some cages and it seems to have paid off.

ReUpdate:
I misquoted Diane. She apparently told me that they had just resubmitted the Cyber Knife claim but the person with the insurance company who spoke to the doctor thought that there was a good chance it would be approved.
Also she just told me that all of his liver numbers are higher. They suspect is caused by the chemo. Cody will probably need platelets and red blood soon. We are back in the chemo groove...


Here are some of the Super Bowl pictures I promised.


Justin and Daniela enjoying the game.


Mommy and Cody..


My man..


Cousin Chris with Justin and Cody...


Cody loves Chris... Chris and Cody have always been close.


Buddies..


Pretty Boy...

Sunday, February 1, 2009

Welcome to Steeler Country !!!!!!




Go Steelers!!!!!!