Moved to PICU....

I just found out from Diane that Cody was moved from his room to the Pediatric ICU early this morning. He keeps getting fever, chills and blood pressure problems...

I'll keep you posted....

Diane called me at lunch. They are now getting more concerned. They have him on medication for his blood pressure and it seems to be giving him an irregular heart beat. They want to get blood and platelets on board in hopes that his blood pressure comes back up.

Thank you for the prayers.

I don't want to leave you all hanging but I also didn't want to speak too soon. Cody has not had a fever since yesterday evening. Unfortunately you all know he had other things going on. The combination of major chills and high temps all pointed to septic shock. Since he got platelets and blood this afternoon his blood pressure has held it's own. The medicine Dopamine (Spelling) that is used to raise his blood pressure gave him an irregular heartbeat. They were able to take him off it after the platelets. Actually now his temp is running a little low. It’s just one thing after another with the poor little guy. As long as we don’t hit anymore hurdles through the night, we may get out of PICU. We really need to see his blood start to recover. It should happen any day…

I would like to thank all of you for the continued prayers and support.

Some good, some not so good...

Well this morning about 5am he had his first BM in 2 days. It was definitely not solid but I was happy to see things moving as long as they don't move too much... If you know what I mean.. His hi temps came back last night but not as high as it had been for the past few days. It got up to about 101 at 9pm and again at 4am this morning. The poor little guy just can't catch a break. They are starting to it may possibly be viral. If that is the case they will have to wait for his system to recover. Overall the doctor is pleased that he seems to be heading in the right direction.

I'll write more later.....

It's noon and things are not much better. He is napping now and his temps continue to climb. I feel so bad for him. He keeps taking his meds and he just can't get on top of this thing. The next move may be Motrin. I'll have to wait and see what the doctor says.

I also just spoke to the surgeon who removed his tumors the first time. He said as far as the surgery goes they will probably do it down here. He says that they have some of the best liver transplant doctors around. But, he also said that he was told that Cody is not a candidate for a liver transplant because his cancer has returned. To me this is one little hint that the outlook does not look good for Cody. Again this is beginning to give me that helpless feeling. There has got to be a better way to treat kids with cancer. Nothing works for sure and yet you have to try and reassure your child that he or she is going to get better. I can't help but feel like a liar.

I'll keep you updated...

Fever still high.....

I just talked to Diane and she said that Cody's fever is still very high. They just gave him Tylenol and his temp is @ 103.7. He's had Morphine this morning also for his stomach pain. On a good note he has not had a BM since Sunday night. You may think that isn't good news but since he's been having diarrhea we are glad that has stopped. I think he is starting to turn the corner on this latest chemo treatment. Now we are hoping they get the right antibiotic soon. These high temps are not good.

I'll write more later...


Well it's 7pm here and things are starting to look a little better. "Knock on wood!" Cody's temp has been down since this afternoon. They started to give him "the big gun", Vancomycin. This the one that when it's given to him too quickly he's gets what is called "Red Man's Syndrome." They have started to administer it over a much longer time. They took him down for scans today because they started to worry that he may have blockage or swollen intestines. He continues to have abdominal pains and needs Morphine to help relieve the pain. His scans came back negative and the doctor is pleased with her exam of his tummy. His blood counts are very low so we will be here until his system recovers and he stays fever free.

Thanks for stopping by.....

Back at Georgetown..

Well Cody's temp started to go up again last night. So around 11pm we headed in. They had a room ready for us when we got here. He is in pretty bad shape right now so I'm actually glad to be here. He hasn't eaten much of anything for days so he doesn't have enough energy to walk. He still has diarrhea but doesn't have anything in his stomach to get rid of. They have started a whole spectrum of antibiotics last night. We will be here until at least Friday. He needs to go on IV feeding again. He can't eat and his body has nothing left to use as fuel. If there is any new info I will be sure to update.

Thanks for reading.....

It's 11:30am and we had to give him some morphine. He is having some very bad abdominal pains. I hope he starts feeling better soon.

Well it's 4pm and things are not much better. Cody's temp went up to 103.3. We had to give him more morphine and Tylenol. We are also using cold wrags on the head. On the good side he hasn't any diarrhea today "knock on wood".

Never a dull moment....

Yesterday was a pretty quiet day for the most part. Cody definitely felt under the weather. His diarrhea is still hanging on. Even with the Imodian AD. He spent the day laying on the couch and being held. He is now complaining of pain in his knees and some of the joints in his hands. We are not quite sure what is causing this. This is one of the chemo drugs side effects but it should have shown earlier than this. The GCSF that we give him can also cause this but he has had GCSF after every round of chemo and this has never happened before. Last night about 9pm he started getting a fever. It was teetering between the upper 37s and 38. 38 degrees Celsius is the magic number but since it kept going down a little and never went above that the doctor said "keep him at home." We may be heading in today, we will have to wait and see. The poor little guy still isn't eating. He ate 4 chicken nuggets yesterday. We were hoping that his appetite was coming back. Friday night when they got home he ate a half of a cheeseburger before he went to bed. We will see this morning. When I was laying in bed this morning I could hear his stomach growling. One more little twist, before bed last night he vomited after being given the Imodian AD. If he can no longer stomach this I'm not sure what we are going to do.

Keep praying please....

Back home..

Cody and Mom are home. He received blood and platelets today. Now we cross our fingers and pray for no fevers. If he can stay away from all the little bugs out there we will be fine. We have nothing planned for the weekend and we hope to keep it that way... I'll check in tomorrow... :D

All is quiet on the home front....

Cody and I had a good day together at home. He is still not eating but he is in pretty good spirits. He and Diane will be making the trip into Georgetown today. We fully expect it to be a long day for them. He will at least need platelets. No news on what is next for the little man. In 3 weeks or so he will get scans again to re-evaluate the size of his tumor. Then we will go from there.

Last night before bed Diane and I had to change the dressing on his lumen. I have to say, "that was the smoothest it has ever went." He was calm and didn't fight us at all. Unfortunately the dressing has to be changed once a week in order to keep it dry and clean. Basically it's just a piece of clear tape that covers the opening where the tube comes out of his chest. If moisture or dirt gets in or around that area we would have big problems. So much so that he would have to have the tube replaced which would take surgery.

I will post this evening to update everyone on the day. Once again I would like to thank all of you for stopping by. It means an awful lot to Diane and I that so many of you care and are praying for Cody and our family. We feel like we are not going through this alone.

No news is good news...

We had a pretty quiet evening last night. Daniela went ice skating with her friend. The rest of us watched TV, put together puzzles and play with our Webkinz. Cody's diarrhea is still hanging on but no blood, "knock on wood." He's not eating much at all so they will be starting IV feeding tomorrow evening. The doctor really wants to do that as little as possible because it's really hard on the liver. With everything his liver is going through right now, it doesn't need anymore stress. But, Cody can't afford to lose anymore weight either. It's a very fine line we are walking. Diane has to take him in tomorrow and it will probabley be a very long day. He will need platelets for sure, maybe even red blood. I wish I could just hook right up to him. I'm giving blood at work tomorrow and I'm O+. Giving blood down there doesn't ensure it goes to Cody anyway. I have given to Red Cross for many years now. It's something that my mother has instilled in me. Besides an organ, giving blood is one of the most selfless things you can do.

Thanks for checking in...

A better day..

We headed into the clinic this morning. Cody is pretty beat. He has very little energy and could hardly stay awake on the ride in. As I told you earlier, he had no digestive movement over night. This was good news to Dr. Abu-Gosh. She said that if he was still bleeding we would know it. He had his blood tested and everything is on schedule. He is not suppose to go back until Friday. One of Cody lumens was clogged so we had to wait for the special chemical to unclog it. Sometimes his blood clots in the lumen and clogs it. They must remain open in case he needs more than one drug administered at once. To top off the good day he had a bowel movement when we got home. It was blood free. "Hip, hip, hurra!" Please pray for a quiet week...

As promised, here is a picture of my two little monkeys. One is Deck Ape Jr. and the other is Cody.. :D

I'm not sure what the day holds...

It was a quite night. He didn't get up to pee or go #2. The Imodian AD must have did the trick. The bleeding really concerns me. I have to take him in this morning for blood work so we will see. What a difference a day makes. When we got home Sunday night he was wrestling with his brother and running around. Yesterday I walked through the door and he was sleeping in Diane's arms. He isn't eating much now because he is afraid he will have diarrhea again. As soon as he wakes up we will head in. It's better to wait for rush hour to end anyway. I will post again this evening to let everyone know how he is doing. That is of coarse, if we come home.. :(

When things are good, they are really good. But at times like these, every little thing just seems to set me off. I have no patients with the kids or Diane. It's hard to stay positive. I'm running out of steam and starting to question my own strength. This whole thing just seems to go on and on. Just when you think things are going better for Cody they seem to go bad again.

No rest for the weary....

Well it just can't stay calm for long. Diane called me this afternoon to tell me that Cody had blood in his stool. I rushed home thinking that we would be heading in again. Well the blood isn't enough yet to warrant going in. We gave him some Imodion AD and we have to give him more before bed. I fully expected the diarrhea, but the blood has me concerned. The doctor did ease my mind a little. So far the blood is minimal and bright red so it seems to be closer to the rectal area. I have to take him in tomorrow now for sure.

Good cold Monday morning.....

Well we made it home last night about 7:30. Cody took no time at all settling in with brother and sister. He is such a trooper. If it weren't for the bald head you would have a hard time telling he was sick. "Knock on wood" he is handling this chemo pretty well so far. I take him back in tomorrow for blood work. We don't expect his system to hit rock bottom until later in the week. As long as he eats the doctor is going to give him a break on the IV feeding. He looks good but if he doesn't keep eating he will drop weight again. I guess he will be having more scans in the near future. Dr. Abu-Gosh said his liver still feels good. When they took the biopsy of his liver back at Thanksgiving, it was done about 3 or 4 fingers below his ribcage. Now when she examines his liver she has to feel way up under his ribcage. We still want more tumor shrinkage. Right now the tumor is still very large. It is positioned right on a major blood vessel. That's why they didn't want to do surgery yet. If it doesn't shrink more the surgery becomes very risky. We are praying for that tumor to get smaller..


It felt really good to be home with all the kids again. Even though it gets very hectic and stressful at times, it's home... :D We stayed up until 11:30 because the kids don't have school today. The kids are totally hooked and the newest craze. Webkinz has taken the Johnson house by storm. For those of you who are not hip, Webkinz are kinda like Beanie Babies but with a twist. Does anyone say "hip" anymore? LOL! Each of these animals has code that you enter on the Webkinz website. Once there, you feed, play games and take care of your pet. I have to thank Cheryl for this. She bought the kids their first and now the whole family is hooked. It is so bad that when I was at the little gift shop getting Cody a soda yesterday I noticed the Webkinz in the shop. There they had a little monkey. Well being the "Deck Ape" that I am I couldn't pass it up. :) I know, I know, I'm a geek, but it adds a little special bond between the kids and us. Diane has one also. She is much more advanced in Webkinzology than me. Anyway, I will post a picture of the little Deck Ape later this evening. :)

How sad is this, a grown man writing about his stuffed animal?

One more day to go...

Cody has done pretty good the past few days. He just has one more day of chemo in this session. So tomorrow he will get his chemo at 4:30 and then we will get out of here. I don't want to mention it to him because he will have a meltdown if it doesn't happen when he thinks it is suppose to. He is doing well except for his appetite. He didn't eat anything today until this evening. He ate his trusty old lobster tail. Actually that wasn't as easy as it usually is. It took a lot of child psychology and he almost out smarted me.. :D

I'll be getting up early to run again in the morning and try to stay on track. It's just too easy to get into the habit of saying "I'll do it tomorrow". One of the best things about training for a marathon is it keeps you honest in your training. One of my good running friends from Runners World has recently run the Huston Marathon and he dedicated it to his father who is battling cancer and also Cody. His name is Kirk and here is his picture. Kirk also was very kind and sent us his joggers stroller which we will be able to use in New York when we go up. That way I can put Cody in it and won't have to carry him. I'll also be able to run with him when the weather gets nicer. Thanks Kirk!!1

Good so far...

Cody has been handling things pretty well so far. He did sleep quite a while yesterday. He went to sleep around 7pm and really only woke up to pee most of the night. He took his meds great for me last night and today. He really doesn't want that tube in his nose. We have two more nights at the hospital so we pray it continues to go this well.





I started running again. I just couldn't take gaining weight again. This morning I got up at 6:30 and ran through Georgetown, over the Key Bridge to VA and back again. I took a few pictures for my runner friends.



I'm not sure if any of you know this famous place is.. Give up? It's the stairs that the priest fell down in the Exorcist. As you can see the steam coming off my head and hands adds a cool special affect.



Yes before you ask I did run up the stairs.. Just to say I did it.. :D



Here you can see the Washington Monument from the Key Bridge right before sunrise.



Here is Georgetown when running back.

A pretty good day...

After last nights update Diane said that everything went much better. When Cody spit out his meds last night his was told that he would have to get a feeding tube put in his nose. Well he wanted nothing to do with that so he took the meds without anymore problems. He had a great day for her also.

I started my shift this afternoon and he just took his meds again without a problem. I hope he gets through this without too many side affects. Besides the possible hearing loss he may have bad mucositis. That is bad sores in the mouth, throat and digestive track. You can guarantee that he will not want to eat much if that happens. We really have to stay on his mouth care now and that is just as bad as trying to get him to take oral meds.

I hope you all enjoyed the pictures. They really bring out his personality.

So things are going well right now. Keep putting in a good word with the man upstairs.... :D

Things start out not so good...

After waiting until 2pm to get in a room Cody's chemo still hadn't been given when I left at 6pm. Diane called me and said things were not going well. Cody is to take one of the chemo drugs by mouth which was bad news from the start. The drug is in capsule form but Cody won't take pills. So we agreed that they open the capsules and mix them with a flavored syrup. When she called she said that Cody had spit the drug out of his mouth and things were getting very dicey. I know this night isn't going to turn out well..

On another note I've got the Hanna Montana pictures today. Here they are..



This is where Miley is telling her mother that she always has this affect on boys.. :D Actually Cody has this affect on most girls.. :D



This is where Miley is telling Cody that she got him.. She is really a great girl.

Now it's time for me to get on my soapbox. Some of you may have heard about an unhappy concert goer. Apparently the person was very unhappy about a part of the Hanna Montana/Miley Cyrus concert. During the show there is less than a minute where Montana turns into Cyrus. During that minute Hanna must disappear down a hole in the floor while a double dances across the stage giving Hanna time to change into Miley backstage. This person apparently thinks they were ripped off by this part of the show. The time it took for Miley to change clothes made the show a rip off? Get a life... If you are one of those dumb asses that paid $1000 plus for a ticket you were ripped off long before the show began and you have only yourself to blame.. I know she wasn't selling the tickets for those prices, it was those blood sucking ticket brokers... Don't get me going on that...

The girl is classy and she is doing good things. Not for the publicity either...

We are but....

This place is packed.. We've been sent to the clinic downstairs until a couple of people are discharged. Cody is ready... He said he is ready for his super hero medicine. :D I'll update more later...

All full at the inn!!!

Diane called me to say that they have no room for Cody right now. I guess business is too good. They wanted me to bring him in this evening but per my request she had them change it to tomorrow morning. They won't be starting the chemo until tomorrow anyway so why not let us sleep at home.

I'll get a chance to watch part II of Lonesome Dove 'Comanche Moon'. Diane and I watched the first part on Sunday night and we thought it was pretty good. I personally like Val Kilmer's character. He plays a nutty old war hero. Anyway that is my attempt at being a movie critic.

Hey Geel,
you most certainly send cards or letters to Cody. He thinks he is a hot shot when he opens his own mail.

The Night Before..

Well the little man goes in tomorrow to start the next step on the road to recovery. It's been a great week. He is feeling really good and gaining weight again. We pray that this session isn't going to be too hard on him but kicks the shit out of that tumor. Please give an extra prayer for him tonight... Thanks to all of you...

A few pictures from yesterday..

We had a very nice time at home yesterday.





Here are a couple of Justin getting ready to work on his car.

Nice weekend so far.

Yesterday was pretty nice. I got up and went with Justin to work on his pinewood derby car. The race is next Saturday and I will probably miss it. We went to a friends house and cut the car out of a block of wood. Justin sanded it and then applied the primer. He chose gold as his color and put a bunch of stickers on it. We will put the wheels on today and a little weight to the car.

Later in the day we loaded the kids bikes up and took them to a local school so they could ride around. It was pretty nice out when we decided to go but it got pretty cold when we got there. They didn't seem to mind. They all had a blast. It was a nice day outside before Cody has to go in on Tuesday.

The time off of chemo has seemed to do him well. His melt downs have become less frequent the past few days. Hopefully that will be the case when this is all over. Diane was really using her head when she was talking with the doctor about the coming week. Usually when Cody would start chemo it wouldn't get started until late in the evening. By the time he was admitted and the doctor would order his chemo it was always late. What makes this bad is that they usually want him to pee every couple hours so it makes for a very long couple of nights. Not only does it wear on Cody but it also takes it's toll on Mommy and Daddy. Well she told the doctor she wants the chemo hung during the day.. What a concept huh? :D Hopefully this will help him during this session.

I would like to take this time to introduce you to Cody's Doctors.

Dr. AMAL ABU-GHOSH is his main doctor and has been handling Cody from the beginning. She is an angel and we really love her. If you watch the Cody video, she is in the picture with him when he has the tube in his nose. Dr. ABU-GOSH is from Palestine.

Dr. AZIZA SHAD. She is the head of the Pediatric Oncology and Hematology at Georgetown. Dr. Shad and I spent some late nights together when we almost lost Cody due to reactions he had with one of the chemo drugs the last go around. He developed heart failure and his lungs filled up with blood. Dr. SHAD is from Pakistan.

Dr. Gabrial Hauser. Dr. Hauser runs the Pediatric ICU. He was also one of the main reasons Cody is still with us today. Dr. Hauser is from Israel.

The newest member to "Team Cody" is Dr. Shakeel Modak from Sloan-Kettering. He will be handling Cody's treatment while in New York. He is from India.

Now, do you see the pattern here? Each of these doctors are from all over the world. The countries they come from can't seem to get along but they have come together for a common cause and make a difference in this world. Too bad the world's governments can't take a lesson from them.

G.B.
Thanks for the offer. I can honestly say my kids want for nothing toy wise. Between Christmas, Diane's mother, friends and the hospital, they get more than any kid could want. They could use a miracle though. :D

Mom,
they did get a couple of him fighting to get away from her. We should be getting them this week when we go in to the hospital. I really wanted to get up there this weekend but it will just have to wait. Maybe in the spring when the weather is a little warmer...
Love Ya...

The latest...

Well it looks like we are going to do another round of chemo starting next week. As it stands now the tumor is inoperable. They want to change up the chemo mix and hit at least one more time before doing anything else. He will be starting on Tuesday and this one will at last 5 days instead of 4. This cocktail will also include a chemical that may damage his hearing. When Cody was going through this the last time he lost some of hearing because of one the drugs. He has been feeling and acting very good the past couple of days. His anger outbursts have settled down the past few days. We are hoping this will be the case when he finishes his treatment. I guess we will just be chilling out this weekend and try to catch our breath.

Any ideas???

Diane and I were thinking of going away for the weekend. Do any of you have ideas for a couple day get away for the family. Obviously we are limited with Cody's condition, pools are out. We are willing to drive a few hours from the DC area. Any ideas... We just want to get away..

After talking to Diane this morning we are probably going to stick around the house. She reminded me that the doctor doesn't want him in any public places where he will be exposed to large groups of people. Thanks for the suggestions though.


Mom, we definitely want to get up there soon but it may have to wait until he can be around more people. Love Ya!

We have a little more info..

I just got off the phone with Diane. She said that Cody's doctor called her. Keep in mind that this is after Diane called the doctor up in NY. She said that the surgeon and the liver specialist are looking at Cody's x-rays and deciding whether they are going to remove the tumor now or try to shrink it more before the operation. So, in the next few days we will find out and until then we get to enjoy life. No matter what is next we won't do anything until next week. This will give Cody some much needed down time. They don't feel that the cancer will recover in this amount of time. But, the doctors do say that the next chemo no matter if it is before or after the surgery will be a different mix. They feel that the cancer will start becoming resistant to the mix he has had the last two times.

He is so funny. When he likes something to eat, he will eat it everyday until he is tired of it. He is now on a celery w/cream cheese and garlic salt kick. He has eaten half a stalk today.. :D






Now a little self inflicted abuse. Many of my running friends know that I am having a very hard time finding me time. It just goes with the territory. Between being in the hospital most of the time and going through the Christmas holidays I have gained 11 pounds. I have no willpower and I'm not burning the calories that I was burning while marathon training. Willpower was not much of a problem while running because I was so focused on the task at hand. Now the task is different and eating is my comfort. I hope I don't explode before this is over... :(

Here are a couple of Miley photos.

We scanned these pictures of the kids with Hanna Montana last night. The kids want to take them to school to show their friends so Diane made copies for them to take. Daniela is so happy and Justin looks like he is taking the best looking girl to the prom. When I get the other photos I'll post them also.. If you don't know already, you can click on any of the photos I post to get a better look.

Long wait without a word.

We have been waiting all day and still no word from the doctor. I've got to tell you, this is starting to get old real quick. Cody had his scans last Wednesday and they were received by the doctor up in NY yesterday morning. I've got to say that Diane and I both are not real happy with the way things are going right now. Just waiting is killer..

On another note, Diane had to take Justin to the doctor today. He has been complaining the past few weeks that his stomach hurts in the evening after dinner. At first we thought he had a stomach virus or something. He had no fever and didn't throw up so we both began to get concerned that it may be something worse. You know, Cody was complaining of stomach pains also. And before you dismiss this so quickly you have to put yourself in our shoes. To say we are a little gun shy would be a major understatement. So Diane took him to the doctor and the doctor sent her to the hospital for x-rays and blood work. We were both very happy to get a call from the doctor this evening saying that everything came back OK. His x-rays, platelets, white blood cells and enzymes are good. He told us to have him eat more fiber and drink more water. Although Justin says he has a BM everyday the doctor says some kids say they do but may not. Stress may also have something to do with it. You really don't know what is going on in you child's mind all the time. The doctor says we need to also monitor him closely. Never a boring moment.

No big news yet..

I took Cody into the clinic for his blood work today and all is good. His doctor is pleased with the way he is recovering. He confirmed that Sloan Kettering received all of Cody's stuff. She is going to talk to the doctor up there this evening and we should know more tomorrow. If they decide to do more chemo before our visit it will probably start in the next few days.

Cody's tastes change daily. One day he likes lobster tail, one day he likes salmon. His lunch time tastes usually consisted of McDonald's nuggets or cheese burger happy meal. Now he is asking for a Big Mac. It's not the most nutritious thing but it is fattening. :D

As soon as I find out more I will post it ASAP..

Another good day dispite...

the Steelers loss. I know I don't have to tell you that I was not very happy with the outcome of Saturday nights game. The Steelers are beat up. They have much work to do this off season with replacing offensive lineman and special team. Big Ben needs to remove that stickem from his throwing hand so he can learn how to get rid of the ball a little quicker.. OK, I'm off my soap box now back to real life... :D

We had a pretty good day yesterday. The special person I mentioned yesterday was none other than "Hanna Montana". For those of you who don't know who she is, her real name is Miley Cyrus. If the name Cyrus sounds familiar that is because she is the daughter of "Billy Ray Cyrus" who sang (Achy Breaky Heart) back in the 90's. Her tickets are one of the hardest tickets to get right now. Anyway, she is in DC to do a show at the Verizon Center tonight. Now I have to be honest with you, until the ride home from the hospital yesterday I've never heard Miley sing. She gave Justin and Abby one of her new double CDs. She came by on her day off to see the kids at the hospital. This was by no means a publicity stunt. She wanted no press there and we were not aloud to bring anyone besides parents and siblings. She posed for pictures with everyone and signed autographs down at the clinic. Cody had to get his blood work done so he didn't get to see her down there. Diane took him up so they could start that while I watched the other two. As soon as pictures were taken with Hanna we went up to the room to wait for Cody's stuff to get finished. We were only up there for a few minutes before Hanna and her group made their way up to the floor where the patients were. She stopped by every room and posed for pictures and even put a gown and mask on for patients who were in isolation. When she got to Cody's room he was hiding under his pillow. He was playing hard to get and Miley loved it. Her mother was with her and she turned to her mother laughing. She said, "this is how all the boys act around me mom." Everyone laughed as I wrestled Cody to get a picture with her. Miley and her mother are very nice and down to earth. At a time when you read about Briteny and all the other famous stars getting into trouble it was very refreshing to meet Miley. Like I said, she wasn't doing this for a photo op. Speaking of photos, I forgot my camera because we were rushed to get there on time. Luckily they are going to get me a CD with all the photos on it and I will post them as soon as I can. I was telling my kids on the way home yesterday how lucky they were. I told them that "people are paying literally thousands of dollars to go see this girl sing and will only get within 100 feet of her. You guys got to touch her and have your picture taken with her." A pretty good day huh?

Still no word on when we are heading up to NY. I guess we will hear more today or tomorrow when I take him into the clinic. I will be sure to let you all know....

Thanks for reading..

Yummy Clam Chowder...

Yesterday Diane ran out to the stores and Justin went to a friend's house. I had Cody and Daniela for the day. Here are some pretty animated pictures from lunch.








Today we are heading into Georgetown to have Cody's blood work done. They are having a very special guest visiting the kids today and I hope to have some great pictures for you all later.. :D

A good day at home...

It was just me and Cody today. We are looking forward to a great weekend...

Mom, go ahead, give it a try... My mother has wanted to comment for so long but is kinda intimidated by this computer stuff... Give it a try mom...



Just playing some Pirates on dads computer....

Glad to be home...

They are happy to be together again...

Up to speed...

Cody had CT scans today. The results came back as good as we could have expected. The doctor said that the tumor is half the size it was at Thanksgiving. Before, they could not see the major blood vessel that runs through it. Now, she said they can see it very well. What does that mean? At this point we don't know. It is possible that they can remove the tumor but it now depends on if they do it with or without a liver transplant.

It looks like we will be heading to NY next week. We are not sure what day yet but we know it's next week. We also found out that at this point he doesn't have to have his stem cells harvested again. The doctor says they still have enough left from the first time they harvested. He is eating much better now but will still be on IV supplements for a few more days. He should also be coming home tomorrow. It will be nice to get a little time at home before we take that trip. I think the kids are going to have a hard time next week. Even though we spend an extended amount of time at the hospital, there is always one of us at home.

Good night's sleep..

Last night was pretty uneventful. Cody was munching up a storm with junk food until I told him we were going to bed at 11:00. The nurse told me he gained a pound yesterday. That is a big thing... They started giving him supplements through his IV a couple of days ago and he seems to be getting his appetite back so we hope he will gain a little weight back.

He continues to have a very hard time dealing with anger. I continue to have a hard time knowing how to deal with it. I want to be sensitive to his situation but I also want him to know that it is totally unacceptable to act out in such a manner to get what you want. This is a real fine line we are walking here.

We should be getting a clearer picture on what is in store for him. We anticipate that they will be harvesting his stem cells in the next couple of days. There is a real small window when the body produces them. It happens when the body and blood is recovering from chemo. The harvesting process is actually very interesting. The doctor told me that she thinks they can use his central line for the procedure. They hook Cody up to a machine that runs his blood through a tube into the machine. Inside the machine the tube is like a jump rope. There blood runs through the line as it swings around. This process separates the platelets, red blood and stem cells. On the other side of the machine you see three tubes with yellow, red and pink fluid running through it. The yellow and red lines join and mix the platelets back with the red blood as the line returns the blood back to Cody. The pinkish fluid (stem cells) go into an IV bag. The stem cells are now frozen until they are needed. Last time Cody did real well during this procedure. They gave him a drug that made him hallucinate. He was trying to pick and eat the little colored dots off the blanket he was using. Sounds like me in my high school days... LOL.. Anyway, we should soon be heading to New York after this procedure. Then we will find out where we go from there.

Thanks for all the kind words the last few days. This is my way of venting. I may seem scatter brained sometimes but that is only because I am..