Day 148 October 30 2009

Friday-Cody had a good night and a good morning other than being poked. He nibbled in food and I will continue to 'force' that in a some small way. Someone from peds (we were not on the peds floor) brought him a huge bag of Halloween candy. That made him feel a little better and he ate a few pieces. The drs came in around 2 and asked if I was sitting down. I started to sweat. But then he says he is kicking us out of here. You can't do that to me and have me panicking even if for 2 seconds. Then we discuss and find out that we are going home without any kind of IV in and that he is on his own for eating! YES, a little happy and a little nervous. He told Cody he was counting on him. I hope he can do this. I have to push the issue and I will but it is hard. I said a few bites of something every hour to get his stomach back in shape. When he does nibble, he does not vomit. At the hospital on Thursday, he ate 3/4 of an ice cream bar and that came up. I know it probably tasted so good and was nice and cold but it was too much. The little bites definitely work. So we will get that into place. We got home around 6:30 and Bobby his drum teacher came and showed us his very ugly costume. It was great!!

So we are glad to be home and tomorrow is Halloween!!

day 147 October 29 2009

Thursday-we are tired after that late night but we have a pretty good day. The culture from yesterday was negative. Hopefully tomorrow's will be too. The IV that was put in yesterday was not in a good place and caused some pain and swelling and had to be pulled. His veins are so small and are weakened. He had to be poked again and it is so painful. He is a trooper for sure but so hard. We are trying to decide what the plan is. It looks like he will need another temp in so he can get his nutrition while we get him back into eating. I am scared of them because of this infection in his blood but hopefully we can get by without it. We will decide on the plan tomorrow. He did eat an ice cream today but too much and he vomited it. Have to go slow.

Day 146 October 28 2009

Wednesday-Today started out a little stressful but ended with the best night we have had in almost a year. We had another positive blood culture so that line had to be pulled today. An IV in his arm was started after several trys and with Cody handling it the best he could. In the morning, I went to scout out the drs. We had the Islander/Ranger Puck Drop for scheduled for the night and I had to know if we were going. I waited to get them when they came out of report and got the news that we could go to the game!! It was an emotional time and then trying and hoping and praying that the infection was from the line and not from something growing somewhere else in his body. We got an IV in, got his antibiotics and we were on the road at around 3:15. It was yucky weather and even at that time, we hit lots of traffic. We went to McDonald's and he got the OK to have chicken nuggets which he has been wanting. He had a few bites and it stayed down, thank goodness. We got to the coliseum and I called our connection. She met us downstairs and the fun began. Cody was presented with his own Islanders jersey and his favorite number on it. So cool. He immediately put it on. There were camera guys and a photographer there with us too. We met the contact person from the Feldman's, Jeff Picker. We were escorted to the area where the players come out of the locker room and go on the ice. Cody got to stand there and do the high 5's to them. It is amazing how focused they are before the game. It was definitely amazing. I snuck in a few too! Then we went to the ice and watched them practice. We followed them back to the area to wait for game time. We could hear them roaring in the locker room. So cool!! Then they came out for game time. Cody was briefed by the MC guy about walking as even with the carpet, he could slip. I was so nervous. So after the national anthem was played, he started his trek onto the ice. He walked along the side and past the players and they all high 5'ed again. He made the walk to ceneter ice. I could not hold it together any longer. The flood gates opened as I was snapping the photos. Cody was great!! He stood still and waited for the two players to come meet him. They made this huge announcement about him, about how he was released for today to do this and how he is fighting this cancer. He was given the command. He dropped the puck, shook hands with the players and one was his favorite player, Richard Park. He then made his walk back to the player bench, high 5'ed again and safely, returned to his mama...PHEW! We went to do an interview and we hear the scoring. The Islanders scored in the first minute of the game.

We get to our seats and are ready to enjoy the game. Intense game, Islanders win, fights break out, crazy fans! We wait for Ann, our connection and are escorted down to the locker room area again. We stand waiting for the players to come out from their showers and whatnot. Well, they come out and they come right to Cody, calling his name! He chats with them casually and even conversed with the coach. DiPietro was there, the famous goalie that is out on injury. We met a few of the wives/girlfriends too. He got a nice hug and conversation with Richard Park and lots of photos. He got them all to sign his new jersey and then Tavares comes out with a signed stick for him. I think we all became speechless at one point. Cody was on cloud 9 and had one of the best nights he has had in a very long time. He was very tired and barely made it up the stairs and to the car. I got him back to Sloan in 30 minutes. I wish someone would have taken a picture of us. Here we are in Ranger territory, he is decked out in Islanders gear, stick and bag of goodies in hand, in a wheelchair with me pushing him at 11:30 in MSKCC. He made it into bed and took a huge breath before going to sleep. It was amazing, as we keep saying. Thanks to all that made this happen!

day 145 October 27 2009

Tuesday-Not a good day. The new temp line tested positive. I sent out a thorough update so I am going to include that here now:

Hi everyone,

Hope everyone is enjoying the beginning of the fall season. Unfortunately, we are not. Cody was admitted last Monday with a fever. It was a line infection in his temporary line. Let me explain what that is. He has a temporary IV line inserted in his chest with a tube running to a central artery near his heart. It has 3 lumens or lines hanging from it. This is where he gets all of his IV's here at the hospital and I do it at home. He does not have to be poked every time to do blood cultures and to do meds. He is due on Nov. 9th for a more permanent one that is more secure. So when he gets a fever, the first thing they do is take blood from all three lumens or lines to see if they are infected with bacteria. Sometimes, depending on the bacteria, they can treat with through the line with antibiotics or sometimes they have to pull the line to clear up the infection if the cultures are positive. (Did I lose you yet?) We got here late last Monday and tried to treat the infection. It presented itself as one that could be treated and the line left in. But on Saturday he got a positive culture back so the line had to be pulled. He then was given an IV in his arm for his meds. Not fun. On Monday, yesterday, he got the new line placed. The doctors heard some wheezing in his chest and are treating that but wanted to give him 24 hours before he could be released. So today, Tuesday we were discharging when the doctor came in to tell us that one of the new lines tested positive. He is being treated with several antibiotics and we could go home but we would have to be under careful watch. They do not usually send patients home with positive cultures. There are a few problems, one being that the infection could be around his heart because of the line placement, but an echocardiogram confirmed that to be negative at this time. The other problem is that we have to find out where the infection is if it is not the line. So they poked him again so they could check blood not using the lines to see if it is in his blood which means we will have to find out where the infection is. Complicated I know and scary. So while we were discussing leaving and with me doing antibiotics at home which is now problem, I get upset. That made the doctor keep us here. I was nervous to take him home with a positive culture. But I am the bad person now, according to Cody. It is ok, he needs to take his anger out on someone.

The good thing is that we are asked by the NY Islanders, (thanks from a little help from our friends, the Feldman's -thanks Sabrina!!!) to do the ceremonial puck for tomorrow's Islanders vs Rangers game. We have been talking about this since Friday. This is Islanders Fight Cancer month and they are 'hosting' us at tomorrow's game. We are going either way, we will get a pass to leave here if we are inpatient or we are being discharged tomorrow morning. We are VERY excited. That part will not be on TV but we will have lots of photos.

So back to the medical part. Let's hope for a negative culture. If not, we will have to find the cause of the infection which will involve lots of tests and the line will have to be pulled and we will be here for awhile. Thank goodness, there is no fever. I will keep you posted on that issue.

I did get a call from Casey yesterday. It was delayed and a bad connection but he sounds good and it was great to hear his voice. Unfortunately Cody did not get to talk to him. He called when I was home to take care of a leaky fishtank.

So with that, I will say goodnight. Thanks for listening and keeping in touch with us. Thanks again to SH for all that they did Friday night. We love you all.

Mary

day 144 October 26 2009

Monday-Well, we are still at Sloan. We got the new line in first thing this morning. This doctor is very thorough and wants to wait until tomorrow to see that the culture is still negative. The line is placed close to your heart so they have to make sure no bacteria grew there. He had an echocardiogram today too. The dr heard some crackling in his lungs, I actually heard it too, so we are treating that. He got a few nebulizer treatments today. With all that, we should be discharged tomorrow.

I had to run home today to clear out a leaking fishtank. What a mess. Cody's friend Tom came and helped me. The fish are in a crowded tank in the living room for the time being. What a pain. I am wondering if they will make it through the night. While I was home, I did get a call from Casey. It was a bad connection so it was hard to talk. But it was good to hear his voice. It was when I was home so Cody was not able to talk to him this time.

So sweet dreams and extra karma this way so we can be well enough to go home tomorrow.

day 143 October 25 2009

Sunday-A quiet Sunday here at MSKCC. Nothing new here. It appears like we are scheduled for tomorrow for the new temp line but we are an add on so who knows? It would be nice if it is for tomorrow and then we can go home and relax a day or two before the big night. We are outta here Monday or Tuesday. Our big night is the Islander/Ranger game on Wednesday. Cody has made another friend on this floor. We are not on the peds floor but the nurses are just as nice and compassionate. We just click with some. He did eat a little today and took two showers. Without the temp line, he can do that. He has developed a heavy cough so he was put on a different antibiotic in addition to the others. He feels good and we just get bonding and getting closer and closer. Lots of quality time to say the least.

I found out that my school did a "Fall Fair" on Friday. My friends there, the staff and teachers did a bake sale and a few other things and raised a nice donation for us. It brings tears to my eyes. They are truly special people there and I am so lucky. THANKS SH!!!

Day 142 October 24 2009

Saturday-Well, we learned this morning that one of the lines grew the bacteria again so not leaving. The plan is to pull the line, put a new temp one in on Monday or Tuesday. They know about the Islanders game for Wednesday night so we will go to that. The line came out and an IV put in his arm, which he is not happy about it. He got to take a long shower tonight. He ate a few bites of food so we are working on it. While the IV is in his arm, he cannot get his IV nutrition so it is important that he try harder to eat. He does get some extras in his fluids but needs to catch up. The nausea is under control so that is good. I actually feel better that the infected line is out. Better chance of getting to the game. We are still scheduled for around Nov. 9 for his more temporary line. Not sure if we are doing the feeding tube at that time just yet. We will see how it goes.

day 141 October 23 2009

Friday-Cody feels pretty good and is fever free. The cultures are negative so hoping to go home tomorrow. He did not feel like eating today. We watched a few movies and all seems to be looking up. Dr. O'Reilly came in later and said we are preparing for discharge tomorrow so that made us happy. We shall see....

day 140 October 22, 2009

Thursday-Today was a good day. There was no gagging/vomiting and no fever. There was some conflicting reports from the doctors but by this evening it was worked out. The cultures from today are negative so they have to stay negative. It looks like home on Monday if everything goes according to our plan. We got out and took a walk to the lounges on this floor. We talked with a man and his friend was just diagnosed with leukemia two weeks ago. His wife, 36, just had a mastectomy. Crazy and sad. Cody ordered chinese food from here today and had a few bites. Thank goodness.

So let's hope for negative results again tomorrow.

day 139 October 21, 2009

Wednesday-The day started off pretty rough. After moving to the breast cancer floor at 11 pm, we were tired again from last night. They needed our room on the peds floor for a baby.

Weird being here, a woman passed away today and to see her family was heartbreaking. The next time I walked by I saw them covering her. So tough to see that.

The antibiotics kicked in this morning and Cody was very sick. He got very upset and honestly, I am glad he cries sometimes. He needs to get it out. He has infections in two of his lines. He is on four antibiotics. This time it is treatable bacteria and so far, the lines can stay in. We got the nausea under control, watched a few movies and he is really a lot better. The gagging seems to be gone for now and the diarrhea is much better. Maybe these antibiotics are working for other things too. He even ordered food tonight and ate 2 bites of it. He stayed up all day, no naps and showered. We missed the Islanders game tonight but hoping we can go next week. I know we are not going home tomorrow but maybe Friday or the weekend. That is, if we continue on this path and nothing new brews. Say an extra prayer for us please...oxoxoxox

day 138 October 20, 2009

Tuesday-Not a good day and we are exhausted. Cody was able to sleep most of the day. We met with the team and this dr wants to get to the bottom of the gagging issue. She is talking it over with the surgeon to see if he wants to do another endoscopy or a study to have him drink something and watch it go down. Not sure if we will hear back tonight or not. The cultures are still negative which is good. Fever comes and goes but not as high. Thank goodness again and I do not know how to keeping thanking everyone, but the dogs are taken care of AGAIN, thanks to the Morello's and to Moira AGAIN. So we have to give up our Islanders game. I contacted the reps and explained and they have offered other tickets. Then I got a call this evening and there is a game next Wednesday, Islander VS Rangers. It is the Islanders Fight for Cancer Night. They want Cody to do the 'ceremonial puck' that night. I cannot tell him (keep it a secret) in case we can't go but I did tell him we have tickets to go to the game. Maybe he will work harder and get us out of here quicker. He is pretty low right now. Hopefully tonight will be a better night. We have to leave the floor, too crowded here and a baby needs this room. Says he is stable enough to go so not a problem as long as we can sleep. Have a good night everyone.

day 137 October 19, 2009

Monday-Nice sunny day. Cody woke up early to have his chem tutor. Then hewent back to bed. He was scheduled for the spanish tutor in the afternoon and wanted to go to the soccer game. I thought maybe he seemed a little bit more tired than normal but I know you need your energy for the game. Well, the spanish teacher was coming late, we actually forgot she said she was coming late. We were headed to the soccer game when she called. We went to the game and it was chilly out but they won so worth the cold. All seemed pretty good. Home, bath and then it went down hill. Cody was up to the bathroom and vomited twice. I do not know what made me take his temp but glad I did. It was 101 then quickly rose to 102.3. I even checked it in my ear, trying not to believe this was happening. I made the call and knew we would have to come in. We went to Urgent Care and arrived around 11pm. It was a long night to say the least, we got to our room around 4:30 am. No sleep for me. They did the blood cultures and started heavy antibiotics.

We will see what the drs say in the morning.

day 136 October 18, 2009

Sunday-It was a rainy, dreary day. I made chicken soup so I could put your noodles in the broth. We both chilled most of the day. We did a little homework too. Just a relaxing Sunday.

day 135 October 17, 2009

Saturday- I knew Cody would be tired today so I let him sleep as best as I could. The plan for today was some homework, a haircut and then to Schmitt Farm's haunted cornmaze. We had it all worked out with Kate Schmitt and we were allowed to go first before anyone came. She was great and Cody and about 12 friends got to go in before anyone else. It was so nice of her. I even got roped into going in too. It was cool and a little scary. Cody enjoyed himself and loved being with his friends. Thanks to Kate and everyone at the farm that made it happen. The kids thank you too Kate! Cody made it through but was pretty tired and crashed when we got home. That cool fall air wipes him out! Good day!

day 134 October 16, 2009

Friday-Well, we got to the city in great time this morning. We went to the third floor for an EKG to check Cody's heart. A side effect of the new anti fungal affects the heart so thank goodness, all was good there. We met with Dr. O'Reilly. After the chat and visit with him, Cody says he is his favorite doctor. He kinda made us both feel at ease after a rough week. It was a down week for sure. The gagging/dry heaving from his dry throat/thrush is so upsetting. I think we have it under control. He is drinking more and we got a new artificial saliva spray to use and it seems to help. Unfortunately Cody is one of those patients that just takes longer to get over this hump. It is coming but it is slow. This doctor says that by Christmas he should be feeling better. We made it home and we both took a nap and then went to HSE's soccer game and it was cold. It was at 7pm and just damp and cold but Cody wanted to go. It is his social life and I will do my best to get him there. We bundled up and went to the game. Thank goodness they won!Cody fell asleep in the car and had his vomiting episode when we got home. But this time he knew he gagged.

He did get 2 bites of soup down today. We are trying.

day 133 October 15, 2009

Thursday-What a gloomy day. Today Cody slept most of the day. He was up waiting for his math tutor this morning and he gagged and vomited. So we canceled that for today. He went back to bed and woke up in time for his English tutor. He made it through most of that. It is hard to stay focused with someone for 2 hours at a time. He is trying and I am trying to keep him caught up. Not always easy. 11th grade was boring for me. He ate one bite of noodle soup today. He kept it down and I knew he would be able to get it down. He gets his pills down. It is not his stomach but that thrush in his mouth. I did a lot of reading online (good and bad, I know) but this med is supposed to help and there are some herbal things I can try but not sure. We go tomorrow and he will have an EKG to make sure his heart is ok because this med can trigger some abnormal beats. Then we have our regular visit and I hope it is a short one. There is a soccer game but due to the weather I am not sure we are making it. I hope everyone is nice and cozy tonight...yucky out there.

day 132 October 14, 2009

Wednesday-We have hit a low point. The night was not that good and we have this feeding tube issue hanging over our heads. If we have to get it, we will. Cody tried again this afternoon to sip a milkshake. It made him gag and he got the heaves. It did not come up which is good. It is just getting it past his throat. I am hoping this new med works and he can eat. He is upset a bit and just down about the whole thing. I do not feel it is a mental issue and I did read that this can happen. He got up for his tutor and then went back to bed until the next tutor came. I try to get him out each day so we went to get stuff for a care package for Casey. He is going to be overseas till Christmas. He lost a guy in his platoon so he needs to stay. I cannot wait for him to get back. He has called this week and even called grandpa Pete. I see him on facebook so we get to chat there. Cody likes to do that with him too. Let's hope we can get on this 'up' streak and put this all behind us.

Day 131 October 13, 2009

Tuesday-We had a bit of a rough night with diarrhea and then a bout of vomiting. The vomiting is from his thrush infection first causing him to gag then vomit. We left for the city around 9 and as soon as we got on the LIE we turned around to come home to use the bathroom. We stopped one other time on the way and it made the trip feel like forever. We waiting a long time today there too. We have seen this young man there a few times and he and Cody talked. He is there for his 2nd transplant. His brother was there today and he is the donor. So we met the whole family. He and Cody exchanged facebook invites and maybe they will connect with each other. He is 23 but still going through it just like Cody.

We had a long talk today about Cody's not eating and the idea of a feeding tube came up. He is scheduled for one on Nov. 9th but hoping this will not have to happen. He is starting another anti fungal tomorrow that will hopefully help his yucky mouth and then help him to eat. We tried some Insure drink tonight and that was no good. He did have a little of a smoothie I made with fruit and ice cream. We are going to try hard and get him to eating. Then if we are not successful, we will do the feeding tube in his stomach. He is not happy about it but he is wasting away as far as weight goes. We will try harder.

He was upset this evening and then we had to try to do homework which made it worse. I do not know how I could be working through this. I started his meds early tonight so I can go to bed soon too. We need to get a break and move ahead! Soon, I hope....

Day 130 October 12, 2009

Monday-Columbus Day-We thought today would be a good day to go to an Islanders game. It was a good day but it was Kids Day. Cody rested up all morning and we were able to stay for the whole game. They lost but it was a good game. We enjoyed ourselves and we loved seeing our nurse from Schneider's, Jill and her hubby. She is a die hard fan and she and her husband have season tickets. Last season they gave us them for one game and we are going to go next week with them for another game! It is a night game so Cody will have to rest up before the game.

It was great to see Jill and we are looking forward to next week's game. Let's Go Islanders!!

Day 129 October 11 2009

Sunday-Cody woke up and seemed to look more rested. We had planned to do mini golf with his dad and family so we did that. We did not get to finish the course as Cody was pretty tired. Some days he has more energy than others. We left there and had lunch then Cody and I came home. He took a bath and was resting. Everyone came here to say goodbye and we played a few games. He was pretty tired and I know he pushes it sometimes. He is in bed now (7:30) and we hope he feels rested enough to go to an Islanders game tomorrow. Thought it might not be a crowded game and not so rowdy. We will see how he feels in the morning...good night all and thanks for reading.

Day 128 October 10 2009

Saturday-Cody seems to need some days to catch up. He needs to just sleep and relax. So today he slept till around 12 and then we went to HSE's soccer game. He loves going and it is so nice to see the players and coaches and teachers there interacting with him. He leaves there smiling. Everyone makes him feel so special so it is worth going. It is getting cooler so not sure how many we will go to but we will try. They won again and I am pretty sure they are going to the playoffs now. (More games!) We came home, he took a bath and was in bed at 6pm. The colder temps knocked him out. It was a good day for sure! Thanks to all my friends there. It is support and therapy in a sense for me too.

Day 127 October 9, 2009

Friday-Long day at Sloan. We had a normal visit but he needed his IVIG, gammoglobulin. It is for his immune system. We talked about the diarrhea issue and he will be taking an antibiotic for a few days. It is not absorbed, just goes right to the gut so it should help him. We will start it in the morning. We met with the neurologists and they were happy with his progress. They are getting to know the real Cody since he was so out of it when they were treating him before. Cody's big concern is when can he drive again. The seizures and medicines are preventing him. We are going to try to get some kind of clearance for him.

We tried to see our little friend Patrick. We met him from NYU when he was just diagnosed with cancer. He had a tumor on his kidney so it was removed. He came to Sloan and we see him from time to time. Yesterday he had a portion of his liver removed. He and Cody call each other the favorite roommate. Cody wanted to see him but was not allowed. We went to leave a gift and he is in ICU but doing well, his mom emailed me to say. Please add him to your prayer list. He is this sweet 8 year old and has a rough battle ahead too.

Casey called tonight and it was hard to talk to him. He lost a guy in his platoon last week. Scary. I know Cody misses him and is worried. We are trying to work out Christmas plans.

I get off the phone and cry. I am trying to find out what I did to deserve so much pain to my heart? I will get through all of this but so painful. Thanks to everyone and continue to pray for Casey's safe return. xoxooxoxox

day 126 October 8, 2009

Thursday-Today was a busy and productive day. First we met with Cody's guidance counselor. She came over to discuss his schedule and ways we could make school a bit less stressful for both of us. I think we have something worked out so he can feel less stress and not be so overwhelmed. We cut back a few and are helping him review with some regents exams. After she left, Cody worked with his math teacher. He took a little break and then the English teacher came. He was still going strong. And after that, we went to the soccer game. We were 5 minutes late, and I think that is why the team lost. They played a very 'dirty' team and should have won. We saw a few teachers there and it was good for Cody to see one of his favorites, Dr. Stabile. He sat with a friend and it is so good to see him smile. We hung around for the pizza but he did not eat any. Then home for bath and bed. He was tired but had a GREAT day!

day 125 October 7, 2009

Wednesday-Today we decided to go to the mall. It was windy out and we took a stroll in the mall. We hit the two big stores. I am telling you this because when we got home, Cody had a bad headache. Any little thing worries me! I was thinking it could be from the wind or perfumes in the store. Anyway he basically slept all day. Or could it be he just needed a catch up day? He woke up for a little while but was back in bed early.

day 124 October 6, 2009

Tuesday-GREAT day! We got super results today. The diarrhea is caused from a bacteria of unknown origin. It is not GVHD!!! We are cutting back on meds and not adding any for the diarrhea. We will see how he does, as Cody and I think he is getting better with it. We are VERY happy with these results. We went to the soccer game and they won again (undefeated!).

Good day for us and I hope for you too. Thanks for all the prayers. There is some power coming from them. Someone is looking down on us from above. Thank goodness.

Day 123 October 5, 2009

Monday-We had a pretty good day. We got a few things done with the car and then Cody had Spanish today. He was worried about it but he did pretty well. We went to the mall to get his finger sized. He wants a ring. We decided to take a stroll and while we were walking, he put his arm around me. He is just so happy with life. He said he loved me and is just happy. I know these are all good signs. I got a visit from Mary Picarello and Kevin. We kinda just hung in the driveway as to keep Kevin away from Cody. Have to be careful until Cody gets his shots.

We head in tomorrow morning and we will be discussing any new findings and what our course of action will be. Wish us luck.

Day 122 October 4, 2009

Sunday-It was a beautiful morning. We woke up feeling kinda empty. Casey did call us during the night and he was unclear but I think they lost a man. I know there is something going on but I try to avoid that part of the news. We were very lazy today and enjoyed just hanging out. A friend came over to help me do a little bathroom work, we went to get ices and that was our Sunday. Isn't that what Sunday is about?

day 121 October 3, 2009

Saturday-Today Casey turned 19. We were hoping to hear from him last night but did not. Cody slept VERY well and did not wake up for the diarrhea at all. We found out today that it was not over but at least it seemed like we could control it so he can enjoy some things. We had a busy morning with Xena's return (THANKS MOIRA!!!), the nurse and the cleaning guys were here. We went to HSE's homecoming game today. They won! Cody got to sit and chat with some friends and it was so good to see him doing that. He did have a hard time sitting and used me as his "recliner" but he enjoyed himself. It started to rain in the last 5 minutes. We came home, he took his bath and ate a few bites of soup. He came over to me and just hugged me. He said "I don't know what it is, but I feel really good". He then sat on my lap and we just hugged. There is that special spirit I have made reference to before.

day 119 October 1, 2009

Thursday-We had a rough night of several bathroom visits and little sleep. We were told we would go at 4 but lo and behold, they came for us at 11:30. Cody was in the procedure room at 1:00. He was upbeat going in. We heard about an hour and 15 minutes later that they did several biopsies on inflamed areas of his stomach, colon and intestines. It was not a horrible looking outsome but something is wrong. We will know from the biopsies whether it is an infection, virus or gvhd-graft vs host disease, the rejection. Once we know, we will begin proper treatment. When we talked with the doctor, she and I both agreed it was best to stay here tonight. It was 5:30 and one more night here would not be a bad idea. Well, this did not sit well with Cody and he was very upset....with me. He cried and was being short with me. Once he settled down, he apologized and it took all I could to get it out but I told him I know he is scared and I know I am the one he takes everything out on and it is ok. He cried and asked me not to cry but it was hard. I made sure he knew it was ok to cry. In a way, I am glad he cried and that he saw me cry.

Now we have to wait until tomorrow or most likely Monday. We'll keep praying and he will keep fighting. He has to win this.

day 118 September 30, 2009

Wednesday-today was a long day of waiting and frustration. We were told the procedures, endoscopy and colonoscopy would be at 11. Then we were told at 1 then we were told in the afternoon. We got called to come down around 5 and finally at 7pm, they canceled us due to an emergency. A day of no eating and drinking and frustration. Cody was not a happy camper and I cannot blame him.