february 28, 2009

Sunday-Well, today was a great day. We started off not so good with the blood sugars but got them in line this afternoon. We will talk on Tuesday to see if there is anything else we can do to make this better. I am putting less insulin in his TPN (IV nutrition) tonight so that should help from the dipping numbers we got this morning. Cody spent the early afternoon with his dad and I did a few errands. I even went and got a manicure! The plan was to go to Dave and Buster's to watch the hockey game and Cody went there with his dad. I ended up going because his blood sugar dipped and he needed insulin. My plans got cut for sure but the day was good as far as his stool go. He had a pretty regular day as far as that goes. Thank goodness it is working.

I did find out that Cody ate candy yesterday while I ran to the store. He did not admit it until he found the wrappers and he remembered. I felt bad and I know the steroids are making him nutty with food so we talked and hopefully he will not do that again. His sugars are out of whack so this was not a good thing for him to be eating.

I am happy that he is feeling better and stronger. I pray this path continues. The weather has to get nicer as he gets better. It just goes hand in hand.

Casey is off for his 3 week no contact training period. I got a text this morning before he turned his phone in or off. Nicole is moving to their new apartment and her parents are helping her. I am proud of her too.

I hope everyone has a good week!

february 27, 2009

Saturday-Cody slept pretty good last night. He woke up at 8 with a low blood sugar. This is scary. He was very thirsty and shaking. I had to give him his sugar pills and waited for it to come back up. If it is not one, it is another. Well, all day this was an issue only with it going high during the day. It was a day of fingers sticks and insulin. He ate some pretzels today. He actually emailed the doctor to ask and I made chicken broth with noodles. He ate that with crackers. He went to physical therapy and we ran some errands. He seems to be stronger and is not requiring naps which is good. His dad came later in the day with his family and we played a game.

It was a good day. Just praying that the food does not cause irritation.

february 26, 2009

Friday-We got up nice and early. Cody slept well but I was too worried about him. I did not have the necessary stuff I needed for the night so I was worried. The pump they gave him for his IV fluids was rather loud too. Cody finally had a bowel movement this morning without blood. We had to do the laundry at the Ronald house (part of the reason it is so cheap-no maid service) so we had to wait for it. The shuttles were all covered with snow so we decided it was best to walk to few blocks to Sloan. We would have waited for a cab so we hauled our suitcase on wheels and hiked the few blocks to Sloan. Now luckily, I had some winter coats in the car but we did not have gloves or boots. We took our time and we go there relatively dry and not freezing. Once there, we discussed the plan and they checked Cody's blood again and he was fine. He had a bowel movement there but he forgot to look so not sure if there was blood in it. Is this what teen's do??? UGH! We left there around 1:30 and got home around 2:30. The roads were clear but there was a lot of snow blowing around. Hard to believe we got dumped on again. Once home, he had another bloody stool. Still nothing has changed so unless it gets worse, we will be here at home and not eating. It is tough. He is obsessed with it. He went to play his video game and that was broken. So we managed to get him a new one. I feel so bad and he was so bummed and upset. We are trying and I am being kinda hard but he has to not eat. I spoke to the psychiatrist there today and asked her to talk to Cody but we left before she came back around. We will touch base again on Tuesday. So let's hope tonight goes well and we can continue to stay here this weekend. Oh I hope so!

Hope my teacher friends enjoyed the day home and have a good 3 day weekend. Drive carefully out there everyone!

february 25, 2009

Thursday-well, I had thought it was going to be a good day. Cody had two bloody stools and we had to go into Sloan. We beat the snow until we got to around Great Neck. Then we hit it. We got to Sloan around 3 and decided he was well enough to not be admitted but they wanted us close. There was nothing they did there. We concluded that it the salt and vinegar baked chips he ate from Canada made him bleed again. So he is back to not eating and we will rest his GI tract again. He is not happy and it is very upsetting to say the least. So we got a shuttle last night around 7 and went to Ronald McDonald house. It was ok but just a lot of work for one night. I know it got bad here so I guess it was best that we stayed there. We were to report back to Sloan if there were any issues and/or blood, we would need to go back. That is why they wanted us close. It was a quiet night, he slept well. I was kinda nervous with no blood pressure cuff or stuff for the high blood sugars. But we did it.

february 24, 2009

Wednesday- I really cannot believe it is coming up on the end of February. Where do the day go?

Today we kinda blew off the morning tutor. I just needed a day to lounge around in bed. The rain was so soothing this morning. We were in my bed so we could hear it on the roof. It was a pretty good night, Cody did not get up at all during the night. Today was good too. He ate a little bit of snacks, not real food yet. Might try something tomorrow. I have to push it a little bit but he is eating what he wants and so far so good. We ran a few errands in the yucky weather and then he waiting for the afternoon tutor. We did not really do work as we were waiting to watch the hockey game...GO USA! It was exciting. Then we went to physical therapy to work on his foot drop. He did well and got some stretches to do at home to strengthen his ankles and calves. I think part of it is his shoes.

We heard from Casey last night! He finished his 10 days in the woods. He did well but is tired and was very cold. A mother does not like to hear that especially when she cannot provide comfort. I wish he was home with us. Keep up the great work my soldier boy! Love you lots!

february 23, 2009

Tuesday- we got up nice and early and headed in with lots of traffic. The day went well and we barely had any waiting time. We met the team and talked about foods which continued throughout the day. We then went to get his IVIG infusion in the bed area. That takes 2 hours. It is that blood plasma product. He did well without any side effects. Then the girl came to set him up for his EEG. It takes a while to put all those leads on his head. Then he had to sit there for 20 minutes and keep his eyes shut. They try to provoke a seizure with a blinking strobe light and then they had him hyperventilate for 3 minutes. He did it all and then we waited a few minutes for the neurologist. He checked him out and I brought his attention to Cody's feet. He flaps them when he walks. I know he lost a lot of reflexes with chemo but his ankles are very weak. I am going to bring it my the attention of the podiatrist I know. The EEG was normal so no evidence of seizures. We had a long drive home in lots of traffic again. We got home in time to watch the end of the Olympic hockey game with one of the Islanders playing so that was exciting. That team won too. Then Cody tried to eat toast but felt nauseous. He also got a headache tonight. So he went to bed pretty early but I think it is what he needed. We were up early, then the traffic in, then the EEG with the lights, then the stress of worrying about it, then the traffic home. Long day. I am hoping to be in by 10 myself. Hope the rain did not cause too many issues out there...night night.

february 22, 2009

Monday-We both woke up very rested but the day exhausted us. We got the clearance to start eating. So around 12 we started with plain rice. Well, we all know how plain rice tastes and it brought on the tears. I know he was expecting something so much more. He tried a few bites of banana which I am very proud of. He has never liked bananas. He tried broth I made with a cracker. It was all too bland and he was so upset. Finally we left to take a ride and then go to physical therapy. He had emailed the doctor and she said he could try baked chips and/or a baked potatoe with chicken. So we left physical therapy and went to get the chips. He ate 3 of them and seemed ok so far. It is such a tough process and it is hard to deny your child food. It is all he wants and so hard to not be able to provide it. He is really doing well and being strong but he is so upset. So we got all set up so he could go to bed at 8. We have a very early day tomorrow with lots of appts at Sloan. He is getting the EEG tomorrow too. I am waiting until 10 to do his finger stick and I am crashing too. Hope this weather is not so bad for us...have a good night.

february 21, 2009

Sunday-Today was a great day. After sleeping in my bed last night, we woke up rested and felt good. We were deciding on something to do, so we ended up at the Tanger Outlets. We walked around there with Cody's friend, Tom. It was good to see Cody with him. He needs to be around his friends. We left there after Cody bought a pair of shoes and went to walk around the mall for a little while. Cody felt like he wanted to walk so we I kept him out. He was pooped tonight but I was happy he was out and did not need a nap today. He is having a hard time with his not eating and is really hoping he can eat tomorrow. I made some chicken broth for him so it is ready if he gets the green light. His diarrhea is MUCH better and I am thinking the drs will be happy when I call tomorrow. Have to make an appt for his neurologist tomorrow too. So let's hope this is a step in the right direction. Good night all and have a great week.

February 20, 2009

Saturday-SO good to be home. We had a good night and a pretty good day. The nurse was here and Cody's finger from nervous biting, became infected. I called into Sloan and our NP told her to go ahead and poke it with a needle. Now I am pretty sure we have all done that at one time or another but it poses a bigger threat to Cody. I know I have done and it is painful. So we got through that and did lots of soaking and started another antibiotic. It seems much better tonight and I will look at it again in the morning. We took a walk next door and talked to the guy across the street and congratulated him on his new baby boy! We hung out today and Cody jammed on his drums with some southern rock going and he sounded really good. He always laughs at me when I dance and sing while he plays. It is pretty comical.

We both decided to take a nap and I talked him into going upstairs to my bed. Ahhh. It feels like cotton to me. We are going to sleep up there tonight. I cannot wait!

We got our Xena back (Luv you Lots, Moira!!) and she seemed happy to be here. She is snoring as we speak. We will get Jazzy tomorrow.

It was kinda an emotional one for me, just trying to sort out my life. This has been so consuming and I think I am going to find someone to talk to, professionally. I seem to be anxious about certain things lately and it gets tough.

Cody must have felt the anxiety and I know he saw the tears. Tonight we were watching "The Hangover". Cody took my hand and told me he loved me so much and thanked me for all that I do for him. Amazing is all I can say. He is truly amazing and a very special young man.

So I am going to bed early myself to just sink into my bed. Hope everyone got out and enjoyed a bit of the sun today. It was beautiful out. Time for the white stuff to just disappear. Nite all!

February 19, 2009

Friday-It does not feel like Friday and it feels like we were in the hospital forever. It was a long week. Now I just have to get him through a few more days of not eating.

The drs came in the morning and we got a bit of a scare. Cody was talking to them and there were about 6 of them and they were all around him and he remembered he had one of his 'seizure' episodes yesterday when we were down in the cafeteria. Similar situation with a bunch of people in the room. I was next to him so I was not looking at his face but I do recall he was kinda quiet at one point. I was very upset about this and I was worried about that awful virus coming back. We are thinking it may have been a result of the blood sugar dropping (this happened again this morning) and not of the virus. Or possible that his anti seizure medicine is not being absorbed. Levels were taken and an EEG was ordered. The neurologist came in and we discussed the EEG and decided he could wait until Tuesday or Thursday next week to get it. So this prolonged the day. Needless to say Cody was upset and thought we would have to stay. We left there at ummmmm 5pm, just in time for Friday night rush hour. It always works that way for us. It took us a nice long time to get home, around an hour and a half. We are both very tired and Cody went to bed pretty much when we got home. I had lots to do here and am just sitting down at 9:15 to relax. It is all me when we get home. I do the job of maybe 5 people here with an ounce of the training. It is a lot and very overwhelming. I got it all done and someday I will write it all down- a day in the life of Cody. I have to wait up till 11 to check his blood sugar. Hopefully all will remain uneventful and we can move ahead...really move ahead.

Casey graduates from ranger school on April 30th and I would love to be able to go there with Cody. I am once again, getting anxious about my job and not sure if I will go back. It is too much and we have not had a stretch of time where he has stayed stabile. We shall see.

Thanks for reading and have a good weekend...

February 18, 2009

Thursday-Cody continues to do well. He is putting out less volume and doing his best with not eating. It has been since Monday afternoon. He kept busy all day and met with a dance/music therapist and made slime tonight with a volunteer. Not sure if I mentioned it but yesterday he tried to knit with a volunteer too. He is so open to all that. I am so proud of him for that too.

We took a walk downstairs to sit in the cafeteria and his dad was there. Craig, our neighbor was here with a friend so he came to sit with us too. That was great for Cody. We got through another day and we are going home tomorrow if all continues this way. It might be tomorrow evening but tomorrow. He has to not eat until Monday and at that point we will try him on some rice. We are working hard and I guess I will be eating upstairs in my closet once we are home. :)

February 17, 2009

Wednesday-Pretty good night with no diarrhea until 5 am. He is doing well. We have to keep going. It is definitely up there on my list of hard things. He feels bummed too. He said his back hurt today and he is having cramps. We decided to go for a walk early this morning and he got up and was shaking and felt too weak. He also said he needed ice water. Nurse Julie knew it was from low blood sugar. It was a little scary but all leveled out in an hour or so. Glad it happened here so I knew what to expect.

A staph bacteria did grow from the cultures so we are treating it with a different antibiotic. He started his feeds at a VERY low rate to keep his stomach coated. He is handling it all so well. We took a walk downstairs this afternoon. He did good.

We might try to get out of here for a few hours tomorrow. His dad is at the Ronald McDonald house so maybe we can go visit there. We have to see what the drs say in the morning. Not sure just yet.

Hoping for a quiet night and a better day tomorrow...nite all.

February 16, 2009

Tuesday-It was a really long day with lots of meeting and conferences with doctors. The first one did not go over too well. I decided last night to ask them to wait until this morning to tell him about not eating. So he got the news this morning and it was rough. First it was for 3 days and now it is for a week. Cody needs little steps. Our nurse practitioner, Nicole was great. Cody has been dealing with her for quite some time and she was great with him and explained it all to him. He had great questions including the conflicting diagnosis and treatment. We discussed this later in the day with more drs. After he settled down, he took a long shower and then his dad came so we played some games. It took his mind off it for a bit. Then he took a 2 hour nap. He was told by Nicole that she would be back around 4 to check on him. He met with the psychiatrist too and had lots of questions for her. She talked with him alone and came out saying how great he is and what a nice young man I have raised. We discussed the need for maybe some more anti depressants if needed. Then the team came with our dr and we discussed in more detail what the plan is and what the findings are. She kinda made me upset again because on Saturday, Cody ate a chicken nugget and about 5 pieces of popcorn. This did not cause the bleeding but she sometimes seems quick to blame. I let her know we were upset with all the conflicting advice and that at this point, I do not even care what it is because it is treated the same. We know he has to rest his gut for a good 7-10 days. It does not have to be here in the hospital. She is taking it a step further and sending out his slides to Duke for further analysis in case something was missed. It is all pointing to GVHD. GVHD caused inflamed bowels, stomach and colon. So we are treating it with the steroids and we are even reducing them now to ease up on his eating cravings. So we got through today. He had diarrhea during the night, quite a bit but he ate yesterday. It was less today and he did not eat. We will do this and we know it will be tough. He has tackled tougher things this past year and come so far. This too will be behind us. Love you lots my boy!! Stay strong!

February 15, 2009

Monday-We started out today without Cody eating, thinking he would be having a procedure only to meet with the gastro dr saying he could eat, no procedure today. The gastro dr also said it is not GVHD, the rejection disease. He did an internal on Cody and said he felt a skin tag or what might be left of a hemorrhoid. Not a big deal. So Cody ate his usual here and did ok. Then after meeting with the transplant team, they say it is GVHD. Confused yet? Now you know how I feel. I understand that no matter what kind of irritation his bowel and colon has or if it is GVHD, the treatment is the same. So that treatment means...more steroids. WIth that comes his desire to eat everything in sight and he has become anxious, biting his lip today and back to scratching his arm. With that, it was decided this afternoon that we need to start back at square one and cool his system down and that he needs to not eat for 3 days. I do not think any food is causing this as I have explained to the drs but they feel they need his whole gastrointestinal tract to calm down. This is going to be very difficult and Cody has said numerous times that he won't be able to do it. It is going to be a challenge.

The plan is to meet with all of the doctors tomorrow and discuss the treatment. I hope this made some kind of sense. It is all VERY confusing and upsetting to me but hopefully tomorrow we will get a clearer picture.

February 14, 2009

Sunday-Happy Valentine's Day. Unfortunately it is not so happy for us. Shortly after I posted last night's entry, Cody had a bout of diarrhea that was all blood. So around 10 pm, off we go to Sloan. He was really scared after seeing all the blood, understandably so and was very upset. He must be reading online because all he kept saying was "Did I relapse?" The drs were concerned that maybe he needed blood and/or platelets. Once here it was determined that his counts were all good, thank goodness. We knew were staying and got up to the floor around 2:30 a.m. We settled in and today the questions began. It was concluded today that we will be in touch with the gastro team tomorrow. We will figure out a plan then. It is either GVHD, the rejection disease and needs to be treated more aggressively than what we are doing now. Or something else. The dr today seems to think that we will need a colonoscopy or the pills that you swallow that are cameras to determine the cause of the blood. Today things have quieted down. Not as much blood and he is not allowed to eat. That is very difficult as he is on more steroids and the main side effect of the steroids is eating. Cody is not a happy camper. He is getting a course of antibiotics too just in case. Thank goodness there is no fever.

We had such a good day yesterday. There was a game today too that we had wanted to go to so thank goodness we chose yesterday's. We brought them good luck yesterday but they lost today.

Casey was able to have a weekend pass so Nicole drove to the base and they spent the weekend together. He called us a few times and seemed to enjoy his weekend off. His next adventure takes him to the woods for 10 days. Stay strong, my boy!

February 13, 2009

Saturday-Today Cody slept in as he would miss out on a nap if he needed one. His pressure was high just before we left so he needed a dose of the rescue drug. He must have been really excited for the game. We left for the Islanders game around 12:30. We had amazing seats. We were 6 rows up and right where the players come out. I had said as we were driving there that we needed to go to where the Islanders are for pregame practice. We are always at the opposing sides. Well, we were right there today. Thanks Ann!!! OXOX It was a super game with Cody's player, Richard Park scoring 2 goals. They won 5-4. We had a good time. We waited and walked down to the player area and waited for Richard. A few of the other players came out and recognized Cody and came over, Kyle Okposo, Josh Bailey, Jeff Tambelli, Bruno

Gervais, Sean Bergenheim and of course Park. Josh Bailey was wearing his bracelet. Cody was shocked. They are all such good guys and are so personable. They make Cody feel like a superstar. Everyone there is so accommodating and welcoming. I have to find out who to write to. We are very lucky to have this and Cody looks forward to the games.

February 12, 2009

Friday-Cody slept in and did much better during the night. We decided kinda last minute to go meet the teachers for lunch. We stayed for 2 lunches, (they are short and I did not eat twice!!) and got to see some of my friends. It was good to see them and I realize how much I miss them. Life goes on and I know I am missing out on some things. I miss it and I miss my friends. Soon, soon, soon. We had a little time to kill before physical therapy so we went for a walk in the mall. Then Cody did amazingly well at physical therapy. He worked out for an hour straight. I was proud of him. Then he came home and ate and went to bed. It was a good day for all.

February 11, 2009

Thursday-This is Cody and Emily, the girl next door. We decided that since the morning was so nice, we would get out a little. So we walked next door and he made a few snowballs. It was so pretty out. I took a lot of pictures.

I called in today to Sloan because of the diarrhea. I think it was from the broccoli so we cut that out today. He did eat and I have started the immodium again. Hopefully he can stay hydrated. That is my job.

All else is good. This is funny. Cody's cheeks are puffy from the steroids. He was so funny and tried to make his cheeks into that fish face where you suck your cheeks in. Well, because of his puffy cheeks, he can't do it but he laughs hysterically when he tries. It is really cute. Thank goodness he is so positive and so upbeat and is handling this like a pro. He said tonight when we were talking about it, well mom, it had to happen to somebody".

Day 251 February 10, 2010

Wednesday-SNOW, snow and more snow. We got dumped on!! Needless to say, we stayed in and there were no emergencies, thank god. Cody ate pretty well, maybe too well as he has more diarrhea last evening and during the night. I just emailed the drs. He feels fine but just need to know if we need to bring him in tomorrow. Hopefully not. I am going to chill out on the stir fry today. I think the broccoli did it. He had a pretty good day. We started to watch the hockey game but he fell asleep. Casey called and he talked to him for a few minutes. I think he is just exhausted. Looking forward to another quiet day!

day 250 February 9, 2010

Tuesday- I really don't think I need to include the day numbers anymore. I guess after 100 it is kinda useless.

We got up early and went in to our appt. I wanted to make sure we were out in time. I imagined this mad rush on the LIE because of the snow. It was not too bad but we were out around 2.

We had a good visit, his counts are good and the biopsy results were explained a little better for me. Not that I can write it here, but it is all good and he is 'normal' in the blood sense, with red blood cells, etc. It was so good to hear.

We chatted with 2 other families with teen boys with leukemia. One boy was 15 and he had AML and the chemo messed with his legs and muscle control. He hobbles but with a walker and needs a wheelchair. He had a 23 yr old brother there helping him. The other guy had trouble with one of his legs and foot. He had a hard time walking too. We are so lucky in a lot of ways that none of these kinds of things happen. Of course, we have had our share but he always bounces back.

Once home, he wanted chicken teriyaki...again. He ate 2 servings and we started to watch a movie. He did not nap but went to bed early.

I am here waiting for the snow and hoping we do not have to get out in it. Say an extra prayer for me. Happy Snow Day my teacher family.

Day 249 February 8, 2010

Monday- We got the final study results and it says the same. Cody is all donor cells!!!

Today Cody had his spanish tutor and got through a good session of physical therapy!

It was a nice day and productive. I ran a few errands to stock up on supplies. Another snow storm is predicted and we will be in the city tomorrow. Cody tried to nap today but he is really feeling stronger and does not need it. He does go to bed early but that is ok. He still needs rest. Keep up the super job Cody. You are winning!!

Day 248 February 7, 2010

Superbowl Sunday-Cody slept till around 11 today. It was a long night after the game. He decided today that I needed to see Avatar and in 3-D. I was not too keen on it but I went. I thought the story line was good but I could have done without the 3-D and it was very loud. (Am I really getting old??) I had to take the 3-D glasses off halfway through, big headache. I think I ate too much popcorn too. We both came home and took a snooze. Well, I think I just closed my eyes. We wanted to be ready for the game.

Cody felt pretty good today and I feel like his energy is better and he is getting stronger. Matter of fact, last night when we climbed the few flights of stairs to leave the game, he said he felt stronger too. His diarrhea is there but I think it is improving too. Let's hope so anyway.

We watched the game and his dad was here. It was a little too cozy. Thank goodness, they did not go into overtime. Cody enjoyed the game and has moved on to chicken teriyaki. I found a good sauce from a bottle with a little kick to it so he loves it. He ate it 2x yesterday.

Off to bed after the game and let's hope tomorrow is better!!!!

day 247 February 6, 2010

Saturday-Well, I was afraid to wake up and look outside. We had a pretty good night of rest so I was up pretty early. I could not see a trace of snow from our view. I kept thinking and wondering if there was some kind of cover overhead. Well, simple answer. There was no snow! Crazy. When I called Sue out here on Long Island, same answer, nothing! That would make today a lot easier. The doctors came in nice and early too so we decided to just leave when we were discharged to get home and let Cody nap in his own bed before the game. I would say we made it here around 1 and he got to take a nice nap. We went home with another antibiotic for the intestinal tract and to control diarrhea. We showered and relaxed and made it to our hockey game. We had great seats again, thanks Ann! Unfortunately the Islanders lost. Cody did not have a happy face. But afterwards he got to spend some time with his buddy, Richard Park. We went back in the hallway near the locker room and he got so see him there. A few of the other players passed by and Richard chatted with them. Richard had said he wanted to come visit Cody at Sloan but somehow and for some reason, he did not get my email with the details. I felt bad. Cody would have loved that. Cody enjoys his time with him and gets 'star struck'. When we walk away, he cannot stop smiling. All the staff there have made Cody feel like the star. They all know his name and they all stop to say hi to him. It is a short time but Cody feels on top of the world. I think he found out what he wants to do with his life. He wants to involved in this, like a PR person with a sports manager degree. He has one foot in the door, that is for sure. It was a great night and we are so lucky to have this! Thanks all who made this possible. Thanks, Richard, for your time and for the smiles...

day 246 February 5, 2010

Friday-We had a good night of sleep last night. I think after the night before that we just sleep so hard that there is not a thing that can wake us. Today was good. Cody did quite a bit of eating and he is gaining weight. I think he is feeling stronger because he tries to nap but is not able to fall asleep. Hopefully tomorrow he will be able to so he will not be tired for the game. We walked the floor tonight and he was waiting for Friday night's Candy Cart but is going to sleep now. I have to do the dirty job of picking him out treats. We are scheduled to leave tomorrow and I am worried about the snow coming. I figure the roads should be clear and we can leave for the game around 4ish and have plenty of time to get there for 6pm. We are looking forward to a win from our Islanders too. They keep saying Cody needs to be there so I hope they feel his energy. Be safe everyone and enjoy the snow.

Day 245 February 4, 2010

Thursday-well, we got up to the room at 2:30 am. Cody's fever spiked so they ordered another antibiotic. He was looking and feeling much better, just tired, as we got settled into out room.

Today we found out that the stool came back negative for C diff. C diff is a bacterial infection from antibiotics. Everything is pointing to this and the dr said maybe his stools were diluted so that could result in a negative culture. It was much better today and by this afternoon, he was eating again. No fever at all today and he was up and showered. It is just amazing how fast he goes down. The dr today said she is pretty sure we can leave on Saturday and be able to go to the hockey game. I hope the snow is not an issue. He will go home on antibiotics. C diff is caused by antibiotics and you still need antibiotics to treat it. The flora which is the normal bacteria in your intestines gets destroyed from antibiotics. There are other ways to catch it too but this is a result of the treatment he got last week for the virus.

We should hear tomorrow or Monday a formal result of the bone marrow aspirate too.

We are hoping for a quiet night of sleep tonight and a good day tomorrow...stay warm my dear friends...

LATE BREAKING NEWS!! I JUST SPOKE WITH THE DOCTOR AND CODY'S FIRST MARROW CAME BACK PERFECT! WHAT A RELIEF! THE STOOL CULTURES ARE NEGATIVE TOO BUT TREATING IT AS SUCH! THANK GOD!

Day 244 February 3, 2010

Wednesday-Well, today started out good but ended bad. We are back at Sloan. Cody had the Science tutor and took a nap and I thought it was a pretty good day. He had a loose bowel movement that appeared bloody but I was not sure. I went to do my taxes which I found out when I got there that I did not have my W-2. Tells you where my head is. Then I came home and he was bundled in a blanket with a .......fever. At that point, he goes to the bathroom again and it is indeed bloody. So I make the call and gather up our stuff and we leave the house just around rush hour. Luckily it was not so crowded and we made it here in plenty of time. He is back on antibiotics here. It sounds like he has a bacteria called c-diff. It can be from a treatment of antibiotics or you catch it at a hospital usually. They are running cultures so we will see in a day or two. He was really upset, needless to say, about the hockey game which we may get out in time to go. I feel really awful for him. Just not fair.

I was pretty upset today before all this. I have my own issues with my job and trying to stay afloat and then trying to figure out how to juggle all this with my job. I obviously missed the Feb 1 day to return. I was hoping for March 1 but that is just not going to happen. Thank goodness HHH is giving me alternatives. So I am trying for April 1 but I feel in my heart that I will just have to make it September. There is just too much to do and to worry about. Mentally, I do not think it would be good for Cody to sit at home all day, alone. Physically, he could probably handle most things but that is if everything is running smoothly. To try to get to his appointments once or twice a week would be very difficult. It is just a lot more than we ever expected and you can never be prepared for something like this.

I spoke with Casey and Nicole today and I feel their concern too. Casey leaves for ranger school Monday which is like another boot camp. I know he is worried about not being in contact with us to see how Cody is.

I am so happy that I am able to be here for Cody. With the help of my family, my real family and my SH family, I am able to focus on Cody. We really do have a lot to be thankful for.

That's all for now. I am hoping we get upstairs to our room soon. We have to get the antibiotics in before we can go to the floor. It is midnight now and I am going to get our stuff out of the car. Hopefully it will be a short stay.

day 243 February 2, 2010

Tuesday-We were up bright and early and headed in without much traffic. We were seen right away and the procedure is for 11:30. All went well and he was in on time and we were on the road back home at 12:30. We both came home and napped. It was a long stressful morning. Dr. Kernan looks at the bone marrow under a microscope and according to her eyes, it looks good. It has to be read in the lab and we will hear those results Friday or Monday. He is gaining weight and his counts continue to go up. We are continuing with the steroid for another week or two and doing immodium around the clock to control the diarrhea he has. This just may be something he has to deal with. Let's hope not but I have seen a lot more horrific side effects so this one we can handle.

I am doing my best to keep him clean and lessen his exposure to germs. It is hard and you cannot keep a 16 year old in a bubble unless he feels really sick. We were invited to go see the Islanders practice on Saturday morning which we are looking forward to and then the game that night. We go an hour early before anyone is there and we leave once the place is cleared out. We use the VIP entrance and he hardly ever leaves his seat. I do not let him touch anything, door knods, elevator buttons, etc. Public bathrooms scare me and I cannot go in with him so we are working on a routine for that. I get nauseous thinking about it. We do our best.

Trying to figure out my world with work and it will all fall into place.

day 242 February 1, 2010

Monday-Today was a quiet morning and good day to be back home. We needed a morning to get organized with a bit of a new routine. I was supposed to go back to work today and it was a bit emotional for me knowing I could not. I love my job! I miss my friends and my life. I know this is temporary but it is tough. I am going to shoot for March 1 or April 1 but not sure that will even work out. I think in my heart, I know it will be September and I can really focus on Cody and getting him better and where he should be academically. That is a concern too.

He feels good, he looks good and I just hope this is his beginning once again. I buzzed his hair and he looks like he is getting back to his old self. Tomorrow is the bone marrow aspirate which is always a stress factor but we will get through this one too.