Thursday, August 28, 2008
While I'm posting on a negative note, I have to comment about the kids. As I posted before, they have many things planned for us, things such as putt-putt golf, water parks, amusement parks. I've got to say, no matter what we are doing the kids seem to be fighting most of the time. So much so, that I don't want to take them anywhere else. I know what you are thinking, "that's the way all kids are." Well, you are right but we are also the way parents are and I feel as though we need a break also. We went to play putt-putt last night at 8 dollars a head and they were arguing and fighting the whole time. It was all I could do to keep my cool. I felt like spanking them all right there but I didn't want to spend the evening in jail. This vacation has not been as relaxing as you would think. I've been reflecting on everything and I'm having one of those rough times dealing with it all. The phone call didn't help much either. You know, when your child has an awful disease like this you not only have to deal with it but you have to deal with all the other things that parents and two very different married people do. I'm running on empty....
I hope it gets better. We are suppose to go fishing this morning.
Wednesday, August 27, 2008
Tomorrow morning I will be getting up with Cody and we are driving back to Georgetown. He has to get the first of the daily shots that prep him for the 3f8 treatments. They just want to monitor him during the first one to make sure he has no side affects. The rest will be given by me. Diane will be taking him up to New York on Labor Day to start the treatments the following day. They will have to stay through the weekend because he will get 5 doses. With Labor Day being Monday he will not be able to start until Tuesday. We still don't have all the results back from MSK from last week but as I always say, "no news is good news."
We should have many great pictures from this trip but I have no way of uploading them until we get home. I'll probably post one more time this week to let you all know what is going on. Thank you all for the kind thoughts and prayers.
Sunday, August 24, 2008
Saturday, August 23, 2008
Friday, August 22, 2008
He will be missed...
Well sorry for not posting sooner but we have been pretty busy and when I do have any down time Cody demands that he get it.
Just to touch on a few things that have taken place. On Tuesday morning Cody and I got up for a 8 a.m. appointment. Cody had a MRI w/sedation. I have to note that this was the very best that he has come out of sedation. He was just a little groggy but pretty happy. We waited for a few minutes to talk to the doctor but the nurse came out and said that the doctor couldn't see us so we headed back to the room. As soon as we got back my cell phone rang and it was the nurse. She said that Cody's blood came back and he needed GCSF. That is the booster. Well we headed back up there but Cody didn't complain one bit. When we got there they took use right back to the IV room. The nurse was ready with the meds. Now here is something that I won't count on every time, but we did not expect the GCSF to be administered with a needle but through his accessed port. We didn't put any numbing cream on his leg but he took it without one word of protest. In fact, he told the nurse that it didn't hurt at all. I was so proud of him. When we got back to RM house all Cody wanted to do was play in the play room. This week is a special summer camp going on for the families at RM house. Everyday they do fun things. On this day they planned a trip to the
Yesterday, we had to be there @ 7:45 for his blood test to make sure he didn't eat anything before the test. I thought it was going to be a finger stick but it turned out that they were able to get it from his line. We then went downstairs to nuclear medicine and had his PETscan done. It was after lunch when we got back to the RM house. Chris and Daniela went on a fishing trip with the great people from RM house while we were at the hospital. They had a great time and caught some nice fish.
Today Cody had his MIBG scan at 9:45 and then he had his bone marrow test around 12:30. After that I had a chance to speak with Dr. Modack. He told me that Cody’s MRI from Tuesday came back good. He didn’t have results from any of the other procedures yet. He informed me that if the tests come back as we hope, (NO EVIDENCE OF DISEASE) he will begin the 3f8 w/GMCSF on the second of September. This is what we have been shooting for almost 10 months now. He touched on some of the possible side affects of the new treatment. We will have to start administering the GMCSF while we are on vacation. It is a small price to pay for our week at the beach. The kids are all looking forward to it. Okay, the adults are also.
I can’t sign off without telling you about our little adventure. I will start by saying “learn from my mistakes!” If you take a train up to Penn Station, make sure it is the Penn Station in NY and not NJ. That’s right, there are two Penn Stations and it cost me $85 to find out. Not only is it costly but the cab driver we had was one scary dude. His glasses looked like the bottoms of soda bottles. He had a nervous twitch and seemed to carry on conversations with himself. Chris had the honor of riding in the front seat with him. I rode in the back with Cody and Daniela. I was sitting on the hump and many times I think I felt the car bottom out on the axle. The driver didn’t know how to get around in NY and kept asking other drivers how to get where we wanted to go. One time he did a U-turn in the middle of a street only to find out that it was one way. I had to tell him to turn around. By the time we got to RM house I was pissed, nervous and tired. I was just glad to get out of that cab.
That is it for now. I will post the results of the test as I get them.
Saturday, August 16, 2008
On a low note our dog Bear seems to be on his last leg. He is about 14 or 15 years old. He has been a very good dog and he is going to be missed.
Thursday, August 14, 2008
It feels so good to be home... There is just a comfort level that is hard to explain. I can see it in all the kids. They are so happy to be together that they are just taking it all in. We are heading to NY on Monday afternoon. The first plan was Cody, Daniela and myself heading to NY. We found out yesterday that I could not take both kids by myself because of Ronald McDonald House rules. They ask that if you have more than one child that you have at least two adults. The reason is because if your child that is being treated at the hospital becomes ill or they have to stay in the hospital longer than expected there would be a problem with the second child. They don't want to be responsible for the other child. We understand that so we asked that Diane's nephew (Chris) go also. Chris said he would so we are on....
Cody's schedule is as follows:
Mon: We travel to NY.
Pet Scan Injection Pet Scan MIBG Injection
Thur: MIBG Bone Marrow
Wednesday, August 13, 2008
He is looking good and his blood is coming around nicely. Although his ANC number did not go up since yesterday, his white blood cells have went up while his neutrophils went down. That is not a bad thing. White blood cells are made up of many different things and neutrophils are just one. Neutrophils are very important because they fight infection from bacteria and fungus. I hope and expect that his ANC goes up even more tomorrow...
As far as what's next, I will give you all the tentative game plan tomorrow.
Tuesday, August 12, 2008
Saturday they knew that Cody was going to need platelets. It was decided by the "doctor on call" that they were going to wait until his platelet numbers went down even more before giving him platelets. They were plenty low on Saturday and there was no need to wait but "oh well." So at 3:30 Sunday morning they decide that the platelets are low enough. Well, the nurse and the resident pock their heads in the room at 3:30 and want Cody to take pre-medicine for the transfusion. I had to physically hold Cody down and force him to take the meds. This is the kinda bone headed stuff that drives us crazy. There has to be some level of thought put into this stuff. Anyway, it's all starting to wear on us.
As for Cody's numbers today. His ANC is at 1200 which is pretty good. I think the doctor told Diane that she wants him at 4 or 5 thousand before she will let him go home. At this point his number should double and triple everyday.
Keep praying please...
Monday, August 11, 2008
Sunday, August 10, 2008
Saturday, August 9, 2008
Today marks 15 days he has been in the hospital. I hope we are out by next Saturday. It all hinges on his blood....
Thursday, August 7, 2008
I have a special treat for you all when I get home this evening. His hair is starting to fall out now, so we decided to give him a cut. I figured this was the best time to give him a Mohawk since it is going to fall out anyway. He looks sooo cute. I think you all will love it.
Thanks to all of you who have been sending cards and letters to Cody. He really enjoys opening them. Geel, Diane and I loved the letter from Morgan.
I'll post more later...
It's a good thing that I got these pictures yesterday. His hair was falling out and it was getting in his face. He proceeded to pull all of his hair out. I know, that sounds really bad but at this stage a good breeze would have blew it off... He looks so good with a mohawk. Enjoy!!!
Oh, the first picture he is with one of his very favorite nurses Kelly. He wanted to charge her money after she had her picture taken with him. And last but not least is our lovable Linda. She is one of the child life ladies that make life livable in the hospital for the kids and their families...
Tuesday, August 5, 2008
He could be in here for another 10 days or so. It all depends on how quickly he recovers.
Sunday, August 3, 2008
That all of you for the prayers.
Although I'm very tired I'm going to use the time that he is sleeping to try and get some work done. It is very hard to balance all of this.....
Keep praying and thank you all....
Friday, August 1, 2008
The kids wanted to go out with me on my run. So they ran the first mile with me and then I did my usual 5. We are just relaxing before we head into the hospital. Here are a couple of pictures.
His stem cell rescue is scheduled for 10 a.m. this morning. He has a team of 5 nurses who will be working with him. You all are in for a special treat. I'm going to take a video or two of the stem cell process and I will post it tomorrow when I am at home. It will give you all a much better idea of what stem cells are and how they are administered. I will post more later to let you know how things went.
It is 10:50 and they just finished administering his stem cells. So far everything is going well. He is going back to sleep. He was cursing like a sailor for awhile but then settled right down. I'm very proud of him....