Day 117 September 29, 2009

Tuesday-Last night was rough with the diarrhea and vomiting. It was 4 times in one hour. I knew in the back of my head we would end up being admitted today and here we are. Tough ride in with stops along the way and then a long day of waiting but we are here. Tomorrow we are scheduled for a colonoscopy and possibly an endoscopy to rule out GVHD-graft vs host disease. It is treatable so I am told but I feel scared. I hope they are telling me everything. Say an extra prayer tonight.

day 116 September 28, 2009

Monday-We had an uneventful day and went to physical therapy. That wore Cody out but so good for him to get out. Kate Schmitt from school stopped over and brought us a pumpkin and a pumpkin pie! It was a nice visit. Good to see her and to catch up. Thanks Kate.

Day 115 September 27, 2009

Sunday-We woke up to rain here today. It was kinda nice for a Sunday and a day to do nothing.

We relaxed most of the morning. We worked on Cody's homework and then took a ride to get ices. He seems to eat a little of the Rita's lemon ones so off we go. We rented a few movies and just relaxed most of the afternoon. I try to get him out a little each day, no matter what it is. I wanted him to watch "Old School" since he loved Will Ferrell and never saw it. He enjoyed it.

He actually took 2 baths today. He managed to eat a few bites of soup and toast today. I will take it.

day 114 September 26, 2009

Saturday-The morning did not start off too well. Cody was sick to his stomach. He was up a lot last night with diarrhea. I am worried. We planned to go to the soccer game and do the pizzas Cody wanted to do and we did make it. It was perfect weather out and he was good through it all. He got to hang with his team and he smiled a lot which made me happy. Some other friends were there and he sat with them too. We had a great time. We got home and he took a nap. I went to get his meds and it just hits me at odd times and I lost it. I feel so bad for him. I do wish it was me so he could have a normal life. I am scared and I keep praying. He was up for an hour, took a bath and is back in bed as I write at 6:24. He said it was a perfect day!

day 112 September 24, 2009

Thursday- we started with the math tutor today. He was the same one we had last year so we were thinking it would be a good thing. However, Cody was overwhelmed and not so sure this is going to work. We were supposed to have Spanish later but we cancelled it for today. I do feel bad and emailed the counselor so we are working on a plan. We ran a few errands today and walked around at the mall. I am trying to force him to get out a little once a day. We took a ride over to the school and saw the soccer team. He saw one of his friends too and we we went to see her. I will do anything to brighten his spirits.

day 111 September 23, 2009

Wednesday-Today we did a little visiting. We went to get pizza with my 2nd grade teacher friends. Cody did not eat but he wanted to come with me. Then I stopped over at the SooHoo's to meet Mary P and to see her baby. He sure is cute!! Then we came home to have Social Studies. We met this teacher last week and Cody was anxious about the workload and wanted me to talk to him without Cody in the room. I had already emailed him and explained the situation. It is all good and they are more than understanding. We have math tomorrow and spanish. Hopefully that will go ok too. We are still dealing with the diarrhea but the nauseous is much better.

day 110 September 22, 2009

Tuesday-We started out very early to get to the city on time. With all the world leaders at the UN building, we anticipated a long ride in which we got. We were seen right away and we started with our diarrhea concerns. We saw Dr. Boulad this time and I feel like we got some answers. We are coming down on the med that is supposedly causing it. We are adding another anti med to help with the nausea which reappeared. We think this is from the anti viral that we stopped. Poor thing but hopefully it will be under control.

I did not speak to the psychiatrist. We were in and out by noon so she called me later and I discussed my concerns about his social interaction and his attachment to me. I am not rushing things but I have noticed that he is still very dependent on me and that it is hard for him to socialize with his peers. It will come in time. He has a lot to worry about and some things would be so devastating if it happened in front of his friends, nausea and diarrhea. It would be devastating to me! So we are watching this closely and we will go from there. There is still the memory loss and he looks for me to fill in the gaps. He and I have been through this 24/7 and it makes sense. I know the infection set him back and it just takes time. I have reached out to some support from CancerCare so hopefully that will give me some guidance.

We went to the soccer game and they won, again. Cody is becoming their good luck charm since they lost the game we did not go to. He has fun and goes on the field with the coach and team and he is all smiles for that. I am not sure he likes sitting in the stands with all the parents but he does it and he is fine with it. Such a good boy!!!

Day 109 September 21, 2009

Monday-Today is the start to a busy week. We relaxed today and then Cody went to physical therapy but took it slow. He did well, but it wore him out. This past infection really took a lot out of it for sure. We have a lot of questions for the doctor tomorrow and I have asked to speak to the psychiatrist too. Hopefully it will be a short day as he wants to get back to go to the soccer game.

day 108 September 20, 2009

Sunday-Today was a rest day. Cody felt better and rested most of the day. I guess this infection just set him back a little. Looks like we are going in on Tuesday. We took a ride to Dick's to get him a fleece to start layering for the soccer games. It will get cold fast! Then we went to Waldbaum's to get a few things. I was hoping something would strike his fancy but it did not. He was in bed really early.

day 107 September 19, 2009

Saturday-Today we decided to go to this picnic sponsored by Contractors for Kids. They have helped us in the past and we got invited. We brought Cody's friend Tom and at the last minute Cody's other friend Renee came too. It was a long drive but we did it and got lunch there and came home. The kids watched a few movies and it was good for Cody. I did notice that he kinda had some difficulty talking with them at times. I am going to speak to the psychiatrist on Tuesday about this social issue. At the end of the day, Cody vomited again. Later he was able to keep his pills down so guess not a huge issue. I was in touch with the doctor so if we need to, we can go in Monday instead of Tuesday depending on how he is tomorrow.

It is always stressful worrying about these things. Never stops.

Day 106 September 19, 2009

Saturday-Today Cody slept pretty late. He got a lot of sleep! We had planned to go to this picnic out east and two of Cody's friends rode with us. He needs to socialize more and I realized how hard it is for him. He is more mature and he and I have something that no one else shares. I might talk to the psychiatrist about it too. There were lots of periods of silence. I know he does not like his mom hanging around but when we got home and watched movies he asked me to watch it too.

Later in the night before 9 he vomited again. I did get in touch with the dr via my dad, since the internet was down (thanks, Dad) and we will see how he is today. We are going Tuesday but maybe we will go tomorrow. It is just always something to worry about. He slept well and keep all his pills down which amount to about 15 2x a day. Just really worries me.

day 105 September 18, 2009

Friday-I think maybe Cody caught up on his sleep. He woke up at 11:30 after a night of frequent wake ups. Nicole came over to say goodbye. She and her family are on their way down south.

We hung around today and met the Social Studies teacher. He seems very nice and accommodating too. We took a short ride to the store to get some goodies for a box for Casey. Not much of a birthday present but we had fun picking out some goodies. Cody thought he wanted to eat but only to feel nauseous again. He felt pretty bad and said something to me I will never forget or do. He said "Mom, don't leave me". Of course I have no intentions of doing that but then when I asked him why he said because he is so sick. We cried and we need to do that every now and then. I am not sure if this was prompted but earlier we are talking with a neighbor. We were outside enjoying the nice day and I did say that I could see myself going back to FL at some point. Of course I would never do that in the middle of this and I would not leave Cody behind. Not sure if he was worried about that. So sad and he is still so very scared.

Day 104 September 17, 2009

Thursday-Today we got into the city pretty early. I had emailed our doctor ahead of time to tell her about the pink eye. We had to go to Urgent Care which is like an emergency room there. We needed to be away from all other patients. His counts all came back really well and we waited for the doctors. Got the eye drops and were on our way home. Cody took an iced tea for the ride but drank it too fast and it came back up before we even left the city. He is just so upset when he vomits. It makes him feel so low. Luckily I was prepared and we were on our way. I forgot I was supposed to do his new IV antibiotic 2x a day so I had to get home and do that. He slept and then we were to the soccer. He loves his team. All the boys had their CB shirts on and it is so touching. Cody makes his way out to the field at half time and stands next to the coach while he discusses the first half. Then at the end of the game, the boys all come over and high five him. It breaks me down. It was good to see the parents and even a few more came to introduce themselves to me. We are lucky to be a part of this team. I love it and it is so good for Cody.

It was a little cold so we bundled up and we have to go and get more things to layer for him. As soon as we got home around 6:15, he was in bed. He was knocked out. I did wake him a lot last night so I did not mind that he was sleeping so early.

Oh- funny story. A little girl was there, a sister of a brother on the team. I was thinking she must be in 2nd grade so I stopped her. I could not remember her name. I said "You are in 2nd, right? Who is your teacher?" She looks at me and says one word, "You!" It was so funny. She happened to have a different last name than her brother so I know I did not have that name on my list. After her mother said her name, I remembered that name was there. So cute!

Day 103 September 16, 2009

Wednesday- Well, we were hoping this was a day of rest and it was for Cody. He was really tired today. We did visit with Nicole later in the day and watched a movie with her. Cody just feels tired. Looks like he has a bad case of pink eye too. We go in tomorrow so not so concerned and we were there yesterday. Otherwise I would be worrying that it was his low blood making him tired. But all was good yesterday. Thank goodness.

Day 102 September 15, 2009

Tuesday- well on the way home we got the call that the potassium is low and we would need to get blood tests today. SO I tired to go to Sloan here in Commack but you have to be 18 to go there. Weird. I called a couple labs but could not get an appointment. Our only choice was to go to the city. So off we go. Hoped for a short visit. It was relatively short and we had a surprise. The Yankees were there. We are not big baseball or Yankee fans but it was cool to see them. There were three there- Joba, Pettitte and one other guy that I am trying to figure out what the signature says. I told you were are not yankee fans. To be honest, we were more impressed with the bodyguard, he was 6'7!

We hurried home to go to the school soccer game. It was so touching to see Cody out on the field with the players. When he did they hands in the circle before the game and usually shout T-Birds, they said CB! We saw the new practice shirts with CB on the back. Cody watched the whole game and it was hot. At the end of the game, we were standing to leave, and the players did their hand shake with the opponents and they all run to our side and all give a high five to Cody. OK that was enough to bring me to tears. It was really touching. I hope the team knows how much they mean to us! Coach Carcone is an amazing man with a heart of gold.

We hope to get back in time to go to Thursday's home game. It is good for Cody. He is trying to feel good again and do normal things. He is getting there for sure.

Day 101 September 14, 2009

Monday- A day of waiting and emotion. We were up early and got called to go to the procedure room at 10:30. Well, a few emergencies came up and Cody did not go in until 1:30. It was not good to sit there that long and just wait. We saw a lot of the outside world today and it is scary. We know we are surrounded by cancer when we are there but it is hard. After the procedure they send you to xray to make sure the new line is in place. We did that and I was talking with a women about our sons and we both started to cry. There is support there but it is not always the kind I am looking for. When I heard her story, I realize how lucky we are with Cody. When I talked to another family waiting for their daughter's transplant, it was odd saying it already happened to us. Seems like forever. They were asking us the questions. It is a whole other world out there. I have said that before but it is. You do not know and cannot understand until you are there and in it. Cody and I are stronger because of it, for sure. It changes you forever.

We got home around 6pm and all went well other than we are tired. We had to wait for the nurse to come, well, I did. You went straight to bed. So far, so good. "Knock on wood" as Cody says for just about everything! Seems to be working.

Thanks again for our pet sitters!! Love you all!

Day 100 September 13, 2009

Sunday-Quiet and long day for us. Cody got blood taken from his left arm because his right had the IV. About an hour later, he said it hurt and we looked and there was this huge knot there, a hematoma we later find out. He is ok but huge lump there. So have to let that heal, no more blood pressures there. He is a trooper though.

We watched a little football and just took it easy today. Heard that we are going home tomorrow so VERY happy about that.

day 99 September 12, 2009

Saturday- well, today was great. We just heard that the MRI is negative. No virus detected. They will still monitor his blood and check the levels but it is not in his brain. THANK GOD! The bone marrow aspirate and spinal did not show evidence either. All good news. We have to be here until Monday night or Tuesday. He is getting another temporary line in on Monday and once the infection clears he will get the more permanent line. He is not too happy about being here but we will get through this part, no problem.

day 98 September 11, 2009

Friday- I was woken up at 5 am for a call from Casey. Feeling groggy and not realizing that I was waking up to the 9/11 memorial. It was good to hear from him. My thoughts are with all of you that lost someone on 9/11. I watched a lot of the memorial and it was emotional. It has new meaning now that I have a son overseas.
Today was lots of antibiotics again and the night ended with the MRI at like 9pm. Cody was nervous and took some valium before. I am able to stay with him and I keep one hand on his foot so he knows I am there. I do not know how he does it but I guess you just do. This is his 5th or 6th one. Hope it all comes out clear.

day 97 September 10, 2009

Thursday- It was a long day here at Sloan. We waited all day for the MRI which did not happen. Lots of antibiotics were started and taken away.The infection in the line was confirmed. We are here till at least Monday, that is my guess. Cody slept a lot today, bored and the infection is kicking his butt.

day 96 September 9, 2009

Wednesday- well, we woke up today and planned on doing a 'field trip' with friends Mary and Corinne and Nicole was coming. We are all set to leave to go to the aquarium and I checked Cody's temp and he had a fever. So plans changed and we started our journey to Sloan. Blood cultures were drawn and Cody was starting to get sicker so we were admitted after a very long day. There are no bed available on pediatrics so we are on the 5th floor. This morning one of his lines tested positive for an infection. We had already started antibiotics yesterday but today the line was removed and an IV started in his hand. He has had a fever today too. I was hoping he would hold on as his new line gets put in on Monday. It is scheduled for Monday anyway. Today we are waiting for the MRI, you get bumped when you are inpatient. He feels ok and is just tired. There is some good. He was able to take a REAL shower after over a month and was loving it! It wiped him out and he is napping again as I write this. It sucks to be back but thank goodness it is nothing more than a line infection. Thank goodness for our good friends, the Silvino's, the Morello's and Moira for taking our doggies. They get a mini vacation too. I am thinking we are here till Monday due to the IV and then after we get the new one, we will be discharged if all goes well. So here we are again....

day 95 September 8, 2009

Tuesday-Today we were off pretty early. We ended up waiting till 2:30 for the spinal and biopsy. Dr. Kernan did not do the biopsy because she had to leave for her daughter so Dr. Boulad did it. She saw my disappointment.

We talked today about how to deal with this diarrhea. We are doing the meds around the clock, lucky me and hopefully this will kick it or we will need to do further testing. We did not get home until around 6 and Dr. Kernan called to say that the spinal fluid was negative. There were not white blood cells in the fluid which is a good thing and we are waiting to hear back about the HHV6 virus but she thinks that is good too. We would like to stop the antiviral med so once the MRI is negative after Thursday, then maybe we can do that.

Cody was pooped and went straight to bed at around 6:30. I will have to wake him lots so it is fine and he was a little groggy too. He did good today and glad that is over.

I hope the first day back to school was good for everyone. I really did miss it!

Day 94 September 7, 2009

Monday-Cody slept really well with only a few trips to the bathroom. We both woke up when the IV beeped sometime after 9. We are usually up and waiting for it to beep. He did eat a small piece of bacon today so I am happy. We are relaxing today. Tomorrow we head to Sloan for the biospy and a regular visit.

day 93 September 6, 2009

Sunday- Today was a busy day and we woke up and were bored. I looked online for something to do outside and in a not so crowded area. I found a field hockey game at Hofstra. We went to that, came home and Cody took a nap then went to Nicole's house for a bbq. I feel bad because Cody really wants to eat but just can't. He will tell you that is hard to explain. He likes being around everyone and has a good time but just can't eat just yet.

We were home kinda late for starting his meds (IV ones) and he passed out right away.

Slept pretty well and bathroom trips appear to be decreasing.

Day 92 September 5, 2009

Saturday- Today our cleaning guys came back and that was much needed. They do a great job!!

We ran a few errands today and got some movies. With Cody's stomach acting up, it is kinda hard to do all that much. It seems to be getting under control but just in case.

day 91 September 4, 2009

Friday-Today was a very busy day. We started off at our appt nice and early. It was very productive and all was good. We are increasing his med for diarrhea and hopefully that will work. On the way home, Cody got a pair of those sneaker/shoes out that are for improving circulation. MBT's I think they are called. His dad has them and was with us and got them for him. We then got to see Nicole and we went to mini golf with her. It is one of the things Cody can do and likes to do. Then we went to get pizza at the beach in Northport with Nicole and her parents. I thought it might be too much for one day, but Cody did it. We took our IV bag with us. He did not eat and had diarrhea a few times but he was a trooper. He could not keep his eyes open on the ride home but he did it. It was a full day, probably the most he has done in a long time. I am proud of him.

Something you may have forgotten but in honor of our favorite soldier that is away, you can tie a yellow ribbon around a tree for him.

Also September is Pediatric Cancer AwarenessMonth. The color is yellow too.

day 90 September 3 2009

Thursday-We stayed close to home today and are enjoying it.

Today my teacher friends had their day back and it was def weird for me not going. Definitely. I thought about them all day. In time, I will be back. I think I just want it to be normal again.

All is the same here. Still dealing with diarrhea and hoping it subsides soon.

Day 89 September2, 2009

Today was better but still dealing with diarrhea. It was a lazy day. I think I feel kinda bummed and it is because, yes, I miss work. It is an exciting time of the year and I do miss setting it all up. The teachers go back tomorrow and it is always nice to see everyone again. I know I will get there. And I need it.

We hung around all day and then we to watch soccer again. We did not stay too long tonight but it was good to get out.

The bandage stuff is bugging us and frustrating. I called 2x today and maybe on Friday they will stitch it back up for us. Nice day overall.

day 88 September 1, 2009

Tuesday- the morning did not start out too well. The diarrhea is rough. It was messy this morning and actually we both got upset. We headed into Sloan, and I was not sure we would make it. Last night his stitches came out, the ones that hold the port in so I was nervous about that. The visit was good, we are dropping some meds and were are taking Immodium for the diarrhea. The doctor is worried about his coughing and sinus issues so we have lots to do for that. Next week we do another MRI and a biopsy. The port was taped in and it will get switched on the 14th. It is a lot for the next 2 weeks. I just keep thinking what if I was working? No way could I focus on either job.

We made it to watch the soccer tryouts again. Good to see the boys. The coaches are amazing!

We were both in bed pretty early as we started so early.

day 87 August 31, 2009

Monday-We had a busy day. We went to physical therapy and then went to watch the soccer tryouts. It was very touching and emotional to see the 4 coaches come out and actually hug Cody. They said they were soooo glad he was there. And I know they meant it.

We watched for a little while and headed home. It is hard to see Cody being a spectator to all the things he loves and not engaged in them. I know he is thinking too but he does well.

He has come a long way and I am proud of him but it is hard for sure.