This is the first Friday Halloween that I remember. Maybe I just haven't been paying attention. The kids are excited about trick or treating. I have a feeling that I'll be carrying Cody half of the way.. We usually go to another nearby neighborhood because the houses are too far apart with lots in our neighborhood.
Today Cody also goes for his MRI at Georgetown. I will be taking him. Diane will take him one day next week for a couple of other things. If all comes out OK with the MRI we will stay the coarse with the 3f8 treatments in N.Y.
I'll check back later when I have more info.
Don't forget to order you Christmas Cards.. You are giving to a great cause while getting some great cards in return....
Friday, October 31, 2008
Monday, October 27, 2008
The Christmas Cards are ready.....
You can now go to Cafepress and order your cards. Two of them are up now and the other one will be up by tomorrow. Order yours today...
Sunday, October 26, 2008
Sorry for waiting so long....
Diane told me I needed to update the blog. I kinda had to get a few things done at home this week so I wasn't too worried about it.
Friday was a crazy day. Cody had his bone marrow first thing in the morning and then had to go straight to his 3f8 treatment. The bone marrow went well but it's the coming out of the Propofol that is hard for him. As soon as he wakes up I have to try to get him to drink the Beta Glucan. He must drink it an hour before he can start the 3f8. So, we were very pressed for time and had a train to catch at 4:00. Well, it was pure hell trying to get him to down that Beta Glucan. God was looking down on us because after the late start we were lucky enough that he did not need a rescue. This meant that he came out of the treatment in short order. So, we finished, got back to RMH and made the train in plenty of time. We made it back to DC by 8pm. Diane picked us up and the boys were so happy to see each other. I'll tell you, no matter how hard Cody plays and hits Justin, Justin takes it in stride and just enjoys being with Cody. I think he realizes how precious his time is with Cody. Most older siblings don't tolerate their younger siblings.
Daniela has had a rough week. She has been dealing with a virus all week. She missed school all week and has just been miserable. We had her stay at Diane's sisters Friday night just to give her one more day before possibly exposing Cody to that virus. Well, she is home and doing quite well. She actually went with me to a friends to watch the Steelers lose today. What a rough game!!!
By now you have noticed the Cody song. It was written just for him by an organization called 'Songs of Love'. They talked to us on the last trip to NY. They asked all kinds of questions about Cody, his likes and dislikes. The song made me cry the first time I listened to it. If you like the song you can go to www.songsoflove.org and click on the Family & Friends Ringtone Download link. Simply type the last name Johnson in the 'Child's last name' field and the number 16836 in the 'Child's Record Number' field. There is a minimal fee that is charged for the download. It helps these wonderful artists and people afford to continue to bring joy into the lives of these children.
The drawings will become available any day now. I will let you all know as soon as they do. I'm excited about that....
Thanks for reading...
Friday was a crazy day. Cody had his bone marrow first thing in the morning and then had to go straight to his 3f8 treatment. The bone marrow went well but it's the coming out of the Propofol that is hard for him. As soon as he wakes up I have to try to get him to drink the Beta Glucan. He must drink it an hour before he can start the 3f8. So, we were very pressed for time and had a train to catch at 4:00. Well, it was pure hell trying to get him to down that Beta Glucan. God was looking down on us because after the late start we were lucky enough that he did not need a rescue. This meant that he came out of the treatment in short order. So, we finished, got back to RMH and made the train in plenty of time. We made it back to DC by 8pm. Diane picked us up and the boys were so happy to see each other. I'll tell you, no matter how hard Cody plays and hits Justin, Justin takes it in stride and just enjoys being with Cody. I think he realizes how precious his time is with Cody. Most older siblings don't tolerate their younger siblings.
Daniela has had a rough week. She has been dealing with a virus all week. She missed school all week and has just been miserable. We had her stay at Diane's sisters Friday night just to give her one more day before possibly exposing Cody to that virus. Well, she is home and doing quite well. She actually went with me to a friends to watch the Steelers lose today. What a rough game!!!
By now you have noticed the Cody song. It was written just for him by an organization called 'Songs of Love'. They talked to us on the last trip to NY. They asked all kinds of questions about Cody, his likes and dislikes. The song made me cry the first time I listened to it. If you like the song you can go to www.songsoflove.org and click on the Family & Friends Ringtone Download link. Simply type the last name Johnson in the 'Child's last name' field and the number 16836 in the 'Child's Record Number' field. There is a minimal fee that is charged for the download. It helps these wonderful artists and people afford to continue to bring joy into the lives of these children.
The drawings will become available any day now. I will let you all know as soon as they do. I'm excited about that....
Thanks for reading...
Thursday, October 23, 2008
Quite the long day.....
The day started with Cody getting up at 8:30 am. The first thing he said to me was that he wanted to go to school. Well that meant heading out there soon after. He really enjoys his time with the teacher. They have class in the waiting area that is adjacent to the elevator as you get off. If not one on one it's usually only two or three kids so they get special attention. Ann Marie is a very nice lady with a thick New York accent. She is very patient with the kids whom all have different needs. So I tell Cody I will give him 1 hour because he just finished his pre-meds and it takes that long before they can start the 3f8.
Around 10:00 I tell him it is time to go to his room. Without a fuss he runs out of the waiting area. I don't know why but he says that he likes going to his bed. I would expect quite the opposite. This leads me to believe that he doesn't remember everything that goes on in there. "I'm thankful for that." So we get started and he starts watching Scooby Doo. That works pretty well on keeping his mind occupied. Then the dance therapist comes in. Cody really loves when she spends time with him. They play with little toy animals, scarves, percussion instruments and listen to 'New Age ocean music.' :) She has the special ability to speak softly and let Cody take control of play time. He uses his imagination like kids do and she plays right along. It really helps him focus on something other than the pain. Well, he made it through the whole infusion of 3f8 like he usually does and even made it through the flush without any pain. As they were playing with the animals he asked her one of his 'drunk questions.' What I mean by 'drunk question' is it is one of those questions a drunk person would ask that no matter how you answer it you can't get it right. Well he kinda lost control for awhile after that and he said that he didn't want to play with the animals anymore. By now, the meds are really kicking in. Now he shifts his attention to Monopoly. This draws me into play time. I have found that when Cody is not going through 3f8 treatments he plays Monopoly like anybody else would. When he plays while getting his meds it is a completely different game. He tells you what properties you may or may not purchase. Cody is very good with money and numbers but while under the influence he does some very creating financing to say the least. Put it this way, if Cody grows up to work on Wall Street and dabbles in alcohol or drugs we will be in for a recession for sure... :) So we play the game and he actually eats for me while playing which really helped him I think. He was definitely feeling some pain because we had to stop 3 or 4 times so he could lie down. After a few hours the dance therapist says she has to leave and Cody gives her many kisses and hugs.
Now comes the waiting game. I get him to eat as much as I can. He needed two rescues so I was hoping that it would help him recover more quickly.
His MIBG injection was scheduled for 2:30 so we started to prepare to go down stairs at 2:00. He asked if he could go to the play room for a minute while I gathered the stuff up in the room. I asked if he felt OK and would be nice. He said "yes," and ran out of the room. I hurried because I wasn't so sure he was ready for the world quite yet. Or if the world was ready for Cody.... As I rounded the corner hallway heading to the play room I hear Cody cursing somebody out in the playroom. When I get there he is shouting at the top of his lungs for someone to stop looking at him. I knew it was too good to be true. Anyway, I tell him that we had to go get the injection and the whole trip down he was telling me that I was the worse father ever. I hear that so often that I'm starting to believe it... LOL... When we get down to Nuclear Medicine he leaves a path or open mouths along the way. He drops a couple of 'F' bombs and 'Triple asses' as he passes people. I just apologize and tell them that he is on medication and he can't help himself. After sitting in the waiting area for a few minutes having him kick me and telling me to shut up a lady came in and asked me if I wanted to sit in one of the side hallways. She knew what was going on and just wanted to make things easier for me. I accepted and picked Cody up heading out the door. He started laughing like we were playing a game. He was right on the edge of coming out of the high he was on. As we sat down in the hall he spotted a water fountain with little cups. He said he was thirsty and headed in that direction. My old Cody seemed to be back. He was blowing kisses to all the ladies as they walked by. It is funny to watch people when your child acts so loving and polite. They almost don't know how to act. It definitely puts a smile on their face.
Well we get the injection and head back upstairs. The injection is for the MIBG scan which is scheduled for today. We had to go wait upstairs for his MRI scan which was scheduled for 5:30. So we played more board games while we waited.
If any of you are familiar with the MRI it is a very loud, noisy and scary procedure which Cody has always had while under sedation. Well someone decided that he could do it without this time. I had no problem trying because he is doing every other scan without sedation now. So we get started. I had to put a gown on also while going in with him. The MRI machine is a huge magnet that can do major damage to any metal you have on or in you body. It will also erase any of your credit or atm cards. So you must leave all your personal items outside in a locker. The MRI guy puts Cody up on the table and lays a heavy pad on his tummy. It looked and felt like a lead blanket but I don't know for sure. I didn't ask. Then he strapped him down to the table and got ready to start. Cody didn't say a word and laid there nicely waiting to get started. The table rolls him into the machine which is a tube that is just big enough for Cody's shoulders to fit. Now I must say, I would have to keep my eyes closed on this one because I think it would make me a little uncomfortable. Cody seemed to have no problem. Then the process begins. The machine starts with a series of different tone horn sounds. It had a little timer on the front that I could read. It read 3 minutes and it counted down. I thought to myself "3 minutes, this will be a piece of cake for Cody." Well, that was just a small part of it. When the time elapsed it started at 3 again and began another sequence of loud tones. Then again and again. I knew it was only a matter of time before Cody would want out. I think it would've been OK if it weren't for the loud sounds. Well he was about 15 minutes into the procedure and Cody wanted out. I asked the guy on the other side of the glass how much longer it would be. He said "15 or 20 minutes." There was no way.. Cody began to protest and started to thrash about so I asked the guy to stop. This was just too much. I told Cody I was very proud of him for being so brave and that he did his best. Cody then said to me "I told you I needed my 'Magic Milky' Dad." His 'Magic Milky' is the sedation drug they use on him that is white and looks like milk. I told him I was sorry but we had to try. He agreed and we headed out to get dressed. We will have to reschedule the MRI for another time. I hope it is when we return next month but we will see.
At 7pm we headed back to the RMH just in time for dinner. A church group was putting on a party for the kids and they had a DJ. Cody was doing his best 'MC Hammer' impersonation. Everyone loves to see him dance. He really is pretty good. He doesn't seem to have the dreaded 'White Man's Disease." LOL
I'm waiting for a load of laundry to dry right now. I'm going to let him sleep as long as he wants because he doesn't have to be at the hospital until 11:00 for his MIBG. I will have to get the room clean and everything packed tonight because we will be pressed for time tomorrow. We might not be able to get back here in time to check out so I have to get things packed and ready to go tonight. We are both ready to go home... :)
Thanks for reading.....
Around 10:00 I tell him it is time to go to his room. Without a fuss he runs out of the waiting area. I don't know why but he says that he likes going to his bed. I would expect quite the opposite. This leads me to believe that he doesn't remember everything that goes on in there. "I'm thankful for that." So we get started and he starts watching Scooby Doo. That works pretty well on keeping his mind occupied. Then the dance therapist comes in. Cody really loves when she spends time with him. They play with little toy animals, scarves, percussion instruments and listen to 'New Age ocean music.' :) She has the special ability to speak softly and let Cody take control of play time. He uses his imagination like kids do and she plays right along. It really helps him focus on something other than the pain. Well, he made it through the whole infusion of 3f8 like he usually does and even made it through the flush without any pain. As they were playing with the animals he asked her one of his 'drunk questions.' What I mean by 'drunk question' is it is one of those questions a drunk person would ask that no matter how you answer it you can't get it right. Well he kinda lost control for awhile after that and he said that he didn't want to play with the animals anymore. By now, the meds are really kicking in. Now he shifts his attention to Monopoly. This draws me into play time. I have found that when Cody is not going through 3f8 treatments he plays Monopoly like anybody else would. When he plays while getting his meds it is a completely different game. He tells you what properties you may or may not purchase. Cody is very good with money and numbers but while under the influence he does some very creating financing to say the least. Put it this way, if Cody grows up to work on Wall Street and dabbles in alcohol or drugs we will be in for a recession for sure... :) So we play the game and he actually eats for me while playing which really helped him I think. He was definitely feeling some pain because we had to stop 3 or 4 times so he could lie down. After a few hours the dance therapist says she has to leave and Cody gives her many kisses and hugs.
Now comes the waiting game. I get him to eat as much as I can. He needed two rescues so I was hoping that it would help him recover more quickly.
His MIBG injection was scheduled for 2:30 so we started to prepare to go down stairs at 2:00. He asked if he could go to the play room for a minute while I gathered the stuff up in the room. I asked if he felt OK and would be nice. He said "yes," and ran out of the room. I hurried because I wasn't so sure he was ready for the world quite yet. Or if the world was ready for Cody.... As I rounded the corner hallway heading to the play room I hear Cody cursing somebody out in the playroom. When I get there he is shouting at the top of his lungs for someone to stop looking at him. I knew it was too good to be true. Anyway, I tell him that we had to go get the injection and the whole trip down he was telling me that I was the worse father ever. I hear that so often that I'm starting to believe it... LOL... When we get down to Nuclear Medicine he leaves a path or open mouths along the way. He drops a couple of 'F' bombs and 'Triple asses' as he passes people. I just apologize and tell them that he is on medication and he can't help himself. After sitting in the waiting area for a few minutes having him kick me and telling me to shut up a lady came in and asked me if I wanted to sit in one of the side hallways. She knew what was going on and just wanted to make things easier for me. I accepted and picked Cody up heading out the door. He started laughing like we were playing a game. He was right on the edge of coming out of the high he was on. As we sat down in the hall he spotted a water fountain with little cups. He said he was thirsty and headed in that direction. My old Cody seemed to be back. He was blowing kisses to all the ladies as they walked by. It is funny to watch people when your child acts so loving and polite. They almost don't know how to act. It definitely puts a smile on their face.
Well we get the injection and head back upstairs. The injection is for the MIBG scan which is scheduled for today. We had to go wait upstairs for his MRI scan which was scheduled for 5:30. So we played more board games while we waited.
If any of you are familiar with the MRI it is a very loud, noisy and scary procedure which Cody has always had while under sedation. Well someone decided that he could do it without this time. I had no problem trying because he is doing every other scan without sedation now. So we get started. I had to put a gown on also while going in with him. The MRI machine is a huge magnet that can do major damage to any metal you have on or in you body. It will also erase any of your credit or atm cards. So you must leave all your personal items outside in a locker. The MRI guy puts Cody up on the table and lays a heavy pad on his tummy. It looked and felt like a lead blanket but I don't know for sure. I didn't ask. Then he strapped him down to the table and got ready to start. Cody didn't say a word and laid there nicely waiting to get started. The table rolls him into the machine which is a tube that is just big enough for Cody's shoulders to fit. Now I must say, I would have to keep my eyes closed on this one because I think it would make me a little uncomfortable. Cody seemed to have no problem. Then the process begins. The machine starts with a series of different tone horn sounds. It had a little timer on the front that I could read. It read 3 minutes and it counted down. I thought to myself "3 minutes, this will be a piece of cake for Cody." Well, that was just a small part of it. When the time elapsed it started at 3 again and began another sequence of loud tones. Then again and again. I knew it was only a matter of time before Cody would want out. I think it would've been OK if it weren't for the loud sounds. Well he was about 15 minutes into the procedure and Cody wanted out. I asked the guy on the other side of the glass how much longer it would be. He said "15 or 20 minutes." There was no way.. Cody began to protest and started to thrash about so I asked the guy to stop. This was just too much. I told Cody I was very proud of him for being so brave and that he did his best. Cody then said to me "I told you I needed my 'Magic Milky' Dad." His 'Magic Milky' is the sedation drug they use on him that is white and looks like milk. I told him I was sorry but we had to try. He agreed and we headed out to get dressed. We will have to reschedule the MRI for another time. I hope it is when we return next month but we will see.
At 7pm we headed back to the RMH just in time for dinner. A church group was putting on a party for the kids and they had a DJ. Cody was doing his best 'MC Hammer' impersonation. Everyone loves to see him dance. He really is pretty good. He doesn't seem to have the dreaded 'White Man's Disease." LOL
I'm waiting for a load of laundry to dry right now. I'm going to let him sleep as long as he wants because he doesn't have to be at the hospital until 11:00 for his MIBG. I will have to get the room clean and everything packed tonight because we will be pressed for time tomorrow. We might not be able to get back here in time to check out so I have to get things packed and ready to go tonight. We are both ready to go home... :)
Thanks for reading.....
Tuesday, October 21, 2008
Be careful what you wish for.....
Well we found out today that Cody is not HAMA. And we found out in a big way. I have to think of a way to record this experience so that all of you can get a little understanding of what it is like. This is an absolute HELL!
This day started off at 6:45 a.m. I had to get Cody up so he could take his contrast for the CT scan he was to get at 8 a.m. This was a battle from the start. There is a fine line that must be walked when dealing with Cody. On one hand you have a little boy who wants the littlest bit of control of anything that is going on in his life. On the other hand we must get him to take meds, eat when we think he must, not eat or drink when it interferes with the meds and pre-meds. This by itself is very hard. He gets grumpy from not enough sleep. He gets grumpy from not being able to eat. Then we have the reaction to the drugs themselves. To say that this makes him act like Jekyll and Hyde is the understatement of the year. I can't even begin to quote the things in sequence that came out of his mouth today. On the Cody scale of '0 to 10', 0 being the best. I was the zero Dad in the whole world. Then 30 seconds later I am the 1,000,000,000th. The same goes for his nurse Kasey. She did the very best she could to walk the line of keeping him happy and doing her job. Sorry to say it just couldn't work. The absolute hardest part of this is telling yourself that he cannot control the things he is saying or doing. His body is hurting more than we can imagine so we give him pain meds that make him someone he is not. He says and does hateful things that he just can't control. Kasey says that all the kids have different reactions to these meds. Some fall asleep, some get very quiet and others get angry. Here are a few things that I can remember. When he didn't want Kasey or me to talk he would say, "turn the lights off, zip your lip, and don't make a sound." Meaning, shut your mouth. Believe me, he had no problem telling either of us to "shut up." If Kasey had to go to the room next door Cody would throw a fit. He told Kasey that he didn't love her anymore and he was taking all his kisses and hugs back. He told me that he wanted to go to a new family. This is not new but he said some other things that I just can't write here. I'm not talking about vulgarity but things that no 6 year old child should even think let alone say. I know he is exhausted. He has been crying, shouting or talking nonstop since 10 a.m. His eyes, lips and face are swollen. His voice is raspy and his nose is running. Myself, I have a splitting headache and I'm tired. I entered the day hoping and worrying that he was HAMA. By the end of the day I'm hoping that he didn't hurt much and that the meds will wear off soon.
This whole process is insane. As I type he is finally telling me how much he loves me and that he is sorry for the day... It's not like he had any say in his day....
Thanks for reading...
This day started off at 6:45 a.m. I had to get Cody up so he could take his contrast for the CT scan he was to get at 8 a.m. This was a battle from the start. There is a fine line that must be walked when dealing with Cody. On one hand you have a little boy who wants the littlest bit of control of anything that is going on in his life. On the other hand we must get him to take meds, eat when we think he must, not eat or drink when it interferes with the meds and pre-meds. This by itself is very hard. He gets grumpy from not enough sleep. He gets grumpy from not being able to eat. Then we have the reaction to the drugs themselves. To say that this makes him act like Jekyll and Hyde is the understatement of the year. I can't even begin to quote the things in sequence that came out of his mouth today. On the Cody scale of '0 to 10', 0 being the best. I was the zero Dad in the whole world. Then 30 seconds later I am the 1,000,000,000th. The same goes for his nurse Kasey. She did the very best she could to walk the line of keeping him happy and doing her job. Sorry to say it just couldn't work. The absolute hardest part of this is telling yourself that he cannot control the things he is saying or doing. His body is hurting more than we can imagine so we give him pain meds that make him someone he is not. He says and does hateful things that he just can't control. Kasey says that all the kids have different reactions to these meds. Some fall asleep, some get very quiet and others get angry. Here are a few things that I can remember. When he didn't want Kasey or me to talk he would say, "turn the lights off, zip your lip, and don't make a sound." Meaning, shut your mouth. Believe me, he had no problem telling either of us to "shut up." If Kasey had to go to the room next door Cody would throw a fit. He told Kasey that he didn't love her anymore and he was taking all his kisses and hugs back. He told me that he wanted to go to a new family. This is not new but he said some other things that I just can't write here. I'm not talking about vulgarity but things that no 6 year old child should even think let alone say. I know he is exhausted. He has been crying, shouting or talking nonstop since 10 a.m. His eyes, lips and face are swollen. His voice is raspy and his nose is running. Myself, I have a splitting headache and I'm tired. I entered the day hoping and worrying that he was HAMA. By the end of the day I'm hoping that he didn't hurt much and that the meds will wear off soon.
This whole process is insane. As I type he is finally telling me how much he loves me and that he is sorry for the day... It's not like he had any say in his day....
Thanks for reading...
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