April 28, 2010

Wednesday-Today started out good but did not end too well. We were at Sloan today and had a good visit. Cody's blood pressure was high there. I admit that I have not been taking it all that much now that the blood sugars are an issue. So once there it was high. We left there around 3 and I took his pressure once we got home and it was still high. I gave him the rescue med and we went to the rc track to get the new motor for his new truck. Cody's dad showed up so I took it upon myself to leave for a little while. Cody got back home and in those 2 hours he spiked again. He was high and had vomited at the track. SO it was off to Sloan we go. We got there around 9 pm I think. Of course when there his pressure was high but not as high as what I got. We checked our handy dandy wrist cuff against a manual one and he was high but def not drastically high. The fellow looked behind his eyes to see if there was any swelling of his blood vessels. This happens with high pressure. So we added more blood pressure medicine. His finger is infected again so we got some antibiotics for that and were sent home. Once home, he got into bed only to get up moments later to go to the bathroom and ended up vomiting too. He got so upset right before he vomited that he pulled his back and yelled out in pain. He could not move and the pain slowly got better but is not gone. He was up a few times but managed to get some sleep. We will see what tomorrow brings...

April 27, 2010

Tuesday-17 years ago today, I gave birth to my second son, Cody Louis. He was a scheduled c section and he was born around 12 that morning- lunchtime. He came out kicking and screaming so I knew he would be different than his brother. Casey was so excited to see him and just wanted to play with him. Time sure flies. Here I am with my baby 17 now and I will have a 20 year old by the end of the year. YIKES

So Cody got up around 11 and got showered. All he knew was that we were going to lunch and maybe our friends from the Islanders would meet us. I cannot believe I held out with the surprise. Richard Park was coming to meet us for lunch!! So he showered and I kept quiet and it was hard for me not to just blurt it out. So we go to TGIF's around 1 and are waiting outside. Cody's dad joined us and we went in to a table. I could see the door and Cody could not. So I see Richard come in with his wife and his little girl. His son was in school. I wave them over, Cody still has not turned around. We were sitting by the stairs and he turns to see Richard walking up and he was about to say that the guy looked like Richard Park and then he realizes it is him and says "Richard". Then just like that his little girl says "Richard" too. It was so cute. Cody cannot believe it. He is smiling. I think he was a bit nervous too.

So we switch to a bigger table and they hand Cody a gift bag. He sits next to Richard and is kinda quiet but is enjoying every second of it. Richard's wife is just as pleasant and his little girl is precious. She sang the song from Annie for me and it brought tears to my eyes. So sweet. She helped Cody open the presents and they gave him some video games and a movie. It is almost time to go and Richard asks for Cody's cell phone number. Cody is shocked and thrilled. They ended up having to leave rather quickly to go pick up their son and Cody stands and just hugs me and is shaking and gets emotional. Tonight he said it was the best birthday ever. No gift, not even his fav car, a mini cooper could be better than this experience. I am so happy for him and glad he enjoyed his birthday. He felt good, although he did not eat but has been feeling well. I will take it. Tomorrow we head back to Sloan for our weekly visit and all things are looking good. So HAPPY BIRTHDAY to you, Cody!

April 26, 2010

Monday-What a rainy Monday. It was a good day to stay home and get some things done. Cody stayed in bed a lot of the day and then was up in time for his tutor. He is working hard with the tutors and will be taking the Regents exams this June. I am proud of his efforts. He is very excited about his birthday tomorrow. I told him he has one surprise from me. He has no idea that I have invited his hockey player for lunch! Can't wait to see his face when Richard Park comes in to have lunch with him.

We went to a therapy session tonight with Cody's dad. This is something Cody wanted us to do. Not sure how or if it will help with anything but we all went.

So off for a peaceful night of sleep..last night with my 16 year old...hard to believe they grow so fast.

APril 25, 2010

Sunday-Cody has been feeling really good. He is tired from all the activity but feels good despite the week he has had. Today he was up and we went to the track again. There was no race but open running so he ran his car all day. He is saving his bday money to get one of the trucks from there. There were more guys there and he was so happy to be back and to do something 'normal'. His dad and uncle came and I was able to get out for lunch with a friend. We got home and Cody had to shower. He came out smiling saying he noticed his cheeks going down. He is so happy about that. He just wants to be normal. He is trying to eat more. I have to go and get some things here so he will have more choices. He is even staying up later tonight. He is getting better, for sure.

April 24, 2010

Saturday-Today marked the 6th annual Alec's Run. Alec was a baby when he was run over by his family minivan driven by his grandpa. Alec's siblings go to SH. They are a very sweet and incredibly strong family. They celebrate his life by having a morning 4 mile run and festivities for the community. They donate the money to local families or foundations. They helped us with a nice donation last year. Cody wanted to go but he was so tired. I went nice and early to see my neighbor and just to say hi. I saw Bill Nelson and I could not believe how choked up. He is a special person. I saw SH's gym teacher, Lauren Weber and she did well. My neighbor did it with her friend and they walked it. It was a beautiful morning.

Today was also my friend Mary Picarello's son's first birthday. We drove out east, Cody drove, and went to his first party. Thank goodness it was a nice day and we were able to be outside. Otherwise we would have had to skip it. They brought out a cake for me and Cody too. It was a great afternoon.

April 23, 2010

Friday-Well, since this is late I am trying to remember what I did on Friday. I know we did not have any tutors so we were most of the day I think. I let Cody sleep as he needed to be rested up for the race track tonight.

We got to the track around 6ish and we did not leave until 11:30. Cody was soooo happy to be there. His buddies were there and made it a big point to make him feel welcome. He wore his mask every time he went into the track without me ever having to tell him. He knows how important it is to wear it. He did not complain about it at all. He ended the night winning 2nd place.

Good day...

April 22, 2010

Thursday-Happy Earth Day! Today was a busy one. Cody slept really well and was up and ready for his math tutor. Knowing he can go to the car track has boosted his spirits so much. He was out in the garage looking for his car and parts. He did well with both tutors today and we went with Nicole to get a slice, he did not eat, and run some errands. Around 7 pm, he said he was hungry-yayyy! So off to TGIF's we go. That is about all he will eat. He ate a few bites and I am happy with that. Tomorrow I am letting him sleep so that he can be rested for tomorrow night...wish us luck.

April 21, 2010

Wednesday-So up nice and early after a few hours of sleep. I was anxious to get to Sloan. They ended up running all the tests and added an echocardiogram. All things were negative, no evidence of a clot and we would have to wait for the echo results. The last thing we did was a chest xray. Cody walked in alone and came out smiling. The tech that did the xray was 23 years old and she was a survivor having the same leukemia Cody had at around the same age. She showed him her port scars and her feeding tube scar. He was so upbeat. I told him those are the kinds of people he should stay connected with. We were there all day, getting home around 7:30 pm. Cody ended up sleeping most of the day throughout all the tests and infusions. He was such a trooper. One of the times I stepped out to go eat lunch I think, our dr came in and she had 2 masks for him. He was thrilled. He has been trying to convince her to let him go race his car at the track. She actually gave him the same ones he was looking at online. He cannot wait to go race on Friday night. It will be a really long night and a late one so I will let him sleep on Friday I suppose. He is so happy to be going. It will be good with him to hang with the guys too.

We finally got home and I had to run the med that I did right before the chest pains started. He was really worried. He then asked if he could sleep with me 'just in case'. I know how scared I was so it has to be so tough for him. Today he said it felt like a huge cage was sitting on his chest.

So we really do not know what caused it. Maybe it was a bad medicine or something, who knows. But he is better, much better, thank God. We are looking forward to a good night of sleep.

April 20, 2010

Tuesday-Well, today is my birthday and I am not 50! I will explain that later.

We got up early and Cody was about to get showered and he vomited. It came out of nowhere. Thank goodness it was an isolated event but I was worried about it all day.

We went to get Nicole and went to Riverhead Aquarium for the day. I was a little disappointed with the place, a lot of things were not open. Cody and Nicole had a good time. We stopped at a TGIF's and Cody told them it was my bday so they came and sang.

Now for the '50' part. A few years ago, my good friend (Not my BEST friend! LOL) convinced SH to believe that I was 50. She (not mentioning her name but it is the same as mine) posted signs all over the school letting everyone that I was 50 (which I am still not). So we are ending a perfect day out with my only family members nearby and we turn down my nice, quaint street and then we see it. The nice tree at the end of my driveway which has yet to sprout much greenery (poor tree) was draped in crepe paper, so many colors. I glance up at the front door and there in GIANT shape made of blue construction paper are the numbers 5 and 0!! OMG!!!

The rest of the shrubbery that I have neglected for a year and a half are covered in the crepe paper and there are hideous kindergarten cutouts of cupcakes plastered to my windows and garage. It looked as though she had to have had help and lots of it! (The cupcakes are cute and are still up for Cody's bday next Tuesday.) So as for my other kindergarten teacher friends (well, I thought they were my friends) all I can say is "your day will come too". I am NOT 50. I know it does not look bad at all as one of these so called friends is indeed 50 or over and looks fabulous. (At least I am pretty sure she is older. Love ya Ro!)

So with that, I (no help for me) went out to clean the debris from my property and I have to be honest and say I had a smirk the whole time I was ripping the paper from my tree. I am especially glad to know that I have several, many in fact, friends that have not forgotten about me even though I am away from them. I am very lucky and blessed so thank you and thanks for the laughs and fun!

Sorry for the bad news and scary news but the night did not end so well. I had just given Cody one of his IV meds and he was about to walk into his room and could not get up. He was having bad chest pains and started to cry. He got really scared and told me to call an ambulance. I called Craig from next door and a fireman to come help me while I called 911. He sat with Cody, held his hand, and tried to keep him calm while I talked to 911 and got stuff together. The ambulance was there in a flash and did a few things, checking his vitals. His eyes were huge under the big oxygen mask and he was so scared, understandably so. He could not get up so a few of them lifted him onto the stretcher. Next thing I knew, I was following a screaming ambulance with my son in it, going to the local hospital in Plainview. I was so worried about him being somewhere other than Sloan and was on the phone every few minutes with the fellow at Sloan. She would call the attending and then call us back and the dr at Plainview would relay the status. They ran a few tests and lots of bloodwork and everything came back negative. After a few hours, the pain slowed down and it was decided we could go home knowing we had to be back at Sloan in the morning. He was still having tightness and we almost drove ourselves to Sloan rather than going home but decided to go home to sleep.

We got a few hours of sleep and would head to Sloan in the morning.

He was so upset about 'ruining my birthday'. I know he was more scared than anything. He kept hugging me telling me that I was the best mom he ever had. Not sure how many he has had but I took it as a compliment. He had me very upset and scared but he was able to sleep.

We have a long day ahead tomorrow.....Thanks again for all the birthday wishes...(I am not 50, MARY PICARELLO!!)

April 19, 2010

Monday-Today was a good day. We hung around most of the morning then Cody went to physical therapy. He is still having lower back pain and enjoys his massages there. Cody then had a tutor and Nicole came and hung with me. I was surprised to hear that she and Casey are planning a wedding now for next April and in Savannah. I don't see the point but try telling them that. We were able to talk to Casey yesterday as he had a day pass and bought a temp phone to use. Nicole is leaving early to go back now that he gets these passes once a week. It was good to see her and she leaves on Friday. She will be with us tomorrow.

April 18, 2010

Sunday-So today was another good one. Cody has been feeling good, looks good and is upbeat. I went to therapy today and left him again and it was good. She is a great therapist and this time it was just me. When stuff comes out, I really realize what we have gone through. It is like a war.

So we have some work to do and I think it will help. Then later in the day, I went out and met a friend for a late lunch. This is what I need. Again, Cody was fine and it felt good.

April 16, 2010

Friday-Well, I realized I skipped this day to write and am now catching up. Not sure when on that. I do know that Nicole came in today and surprised Cody. It was nice to see her.

I got a text message nice and early today from my asst principal asking me if I was coming the district's game night, Family Feud. Then I got another text from my friend from SH, Mike Falen and he said he had something for me. We ended up meeting him and a few others for lunch and Nicole went with us. SH had shirts made up for the Feud game show night and he had one for me. I got to thinking and listened to my therapist and decided that I could go for a little while. Cody was good too and wanted me to go and get out. So I made it there and saw SH kicked Sunquam's butt and then rushed back home in time to do Cody's meds. It was good to see all those that were there and the SH team were hysterical. It was a good night. Cody was fine and was sleeping when I got home. I know I need to do this more and I am working on it.

April 17, 2010

Saturday-Today was a lazy day for sure. It was a pretty good one, but a gloomy day weather-wise. We hung out all day. Cody decided he wanted to cook and I really wanted broccoli rabe and sausage with pasta. So he made it for me. He watches some cooking shows so he was into and it was good!! We finally got out around 5 and went to walk around Hicksville Mall. I try to get him out a little each day and he needed to walk. We bought a few things then we came home and watched Shrek 2.

I was about to go to bed and received an email from Richard Park, Cody's player. He is surprising Cody for lunch or dinner on his bday next Tuesday. I am so excited!!!! I cannot wait to see Cody's face when Richard walks in! Shhhh...it is a secret!!! I hope I can hold out. I have to, just in case he can't make it.

April 15, 2010

Thursday-Today we had to go to Sloan to meet with the gastro team. All is ok there, it was just a follow up. This is the dr that did the scoping a few weeks ago. He said they are still waiting for odd virus studies to come back but he does not feel there will be anything. He feels it is GVHD because nothing else is there. Regardless, we are treating it and his colon needs time to heal. I feel he has had this since way back during transplant when the diarrhea started. He has not had a formed stool since then. It takes time. It has been inflamed for a long time. So let's hope time heals all. We were in and out in a short time. I had talked to and have seen a family there of a former student. The mom, Dina has been dealing with some stomach tumors and is back in and not doing too well. There are some spots on her liver. We popped in to see her and her husband. She is in pain and is pretty sick. Please add her to your prayer list. She has two great kids and just needs to get better. She visited Cody a while back and she told Cody that there are bigger and better things waiting for them once this is over. It is true. Let's pray for Dina too.

Cody does not know but Nicole is here. We will see her tomorrow. She wanted to surprise him so I told him she was not coming. It will be good for him to have her here.

He bought me a ring for my bday. I have been looking at the citrine stones. This color represents leukemia (orange) and childhood cancer (gold). Well he bought it online and the color was off. He felt bad and was sure I would like it. We returned it and I will get something else. He is so thoughtful that way. Sweet boy. Then again, his bday is one week after mine so he has to make mine special. :)

Hope everyone enjoyed the nice day. I heard rain is coming. Not too happy about that but then again, 'april showers.'

Have a good night...

April 14, 2010

Wednesday- I did not write today because I was too tired. For some reason, Cody's IV meds did not make it here until 1:30 a.m. I was on the phone at 9:30 and finally got it delivered by the on call pharmacist at 1:30. So one infusion is an hour long, then I start the 12 hour one. I have to check his blood sugars after 2 hours into the 12 hour one so you see, not much sleep for me. So we woke up for the tutor then went back to bed. We started our day at like 1 pm. We went to TGIF's and Cody ate a few bites there. We talked the drs into letting us go there just for his sesame jack chicken. He was so happy. It is progress. There was blood yesterday but none today. We took a nice drive too and Cody is doing well behind the wheel.

April 13, 2010

Tuesday-We got a late start today. We were up a bit last night with the blood sugar issues and after today's appt, I hope it will be worked out somewhat. We got to Sloan and Cody had fun showing off his photos from last night. He was in a good mood but tired. We had trouble with his mediport so we had to wait even longer, just for blood results. We got a plan for the blood sugar issues and hopefully it will work. We are making adjustments so that he can get the most calories from his feeds and IV nutrition without sending his sugars so high. He is like a science project. Listening to the drs today, you really have to know your math and be able to do calculations. Let's hope it works. We will find out tonight. We had some time so we went to the cafeteria to eat and he tried a burger. It just seems to get stuck in his throat. He gets so upset and just can't eat. It took us a long time to get home, he napped in the car. As for me, I am pooped and am sitting here at 10 pm waiting for his meds to be delivered. UGH. We do not have to go back until next Wednesday. We are skipping the next two Tuesdays for family birthdays.

Enjoy the pic and look closely. This is what steroids do to you..

April 12, 2010

Monday-Today it was a beautiful day. I actually sat out and Cody took a nap. We got ready for the city and the car came at 5:30. It ended up being a limo, pretty exciting. We had a quiet ride in but it was so nice. We got to NBC and took a short walk and took a few pics. I will get them up tomorrow. We went to watch a short video. I was disappointed that we did not get to take a tour but we got to shop in the store and the candy store and then we took these hysterical pictures. I will post them too. We had a fun time with those pictures. We had some good laughs. We walked around again and it was just a beautiful night. Cody, Ally and Renee had a great time trying to get people to wave. We enjoyed the ride home and had another good laugh. Cody called a radio station and he got through. It was so funny, he changed his voice and it was a riot. It was a fun night. Thanks to Renee and Ally for coming with us. You made our night...sweet dreams.

April 11, 2010

Sunday-We relaxed most of the morning. We were up at night with the blood sugar issue and hopefully on Tuesday we will get it worked out. We hung around and waited to leave for the last hockey game for the season. We got there and we were a little disappointed because we did not get to see Richard because they were doing physicals for the team after the game. I know Cody wanted Richard to see his mohawk. He will soon enough. It was a GREAT game to watch but they ended up losing in the last few seconds of overtime. We were watching the big screen and they kepy showing montages of the season and sure enough there we were! Cody made it 2x and I was in the background. It was pretty exciting. It was a great season for the Islanders and we were glad to be a part of it.

We talked to Casey and he is going to stay and wait a few weeks for the next group to catch up and he will join them. I am glad he is staying. Nicole is going to come visit us in a week or two. It will be nice to see her.

April 10, 2010

Saturday-The night was a little hectic with Cody's blood sugars running higher than normal. He gets insulin in his IV at night so not sure why they are all of a sudden rising. I did have to give him a shot of more during the night. We will see how tomorrow goes.

We hung around this morning and then went to our first therapy appt. It was good and Cody did talk and I understand he feels in the middle of me and his dad. His dad did not come and we will plan for him to come the next time. I am going to do a better job at getting out and letting him here alone. He wants that too-typical teenager. So it was good and we will go back. We are scheduled for next Sunday but his dad will not be here so we are trying to work that out.

We had a quiet afternoon and actually both dozed again mid afternoon. I could get used to this.

Nicole got a call from Casey and he got his pass so she was driving back to Columbus last night. She will see him tomorrow for the day. I hope we get some answers. I know it is hard for him and I feel bad. I wish I could help.

Nice day and hoping tomorrow is better.

April 9, 2010

Friday- I do hope the sun comes out! Today we got bad news from Nicole regarding Casey. Not sure what all this means but he did not pass the same part again. So he has to be recycled again. Not sure when this puts him for graduation but looks like he won't be ready to see us in June. We are very sad and feel bad about him not passing. I know Nicole is upset too. They had plans and she just wants to see him. We hope to talk to him tomorrow and we will hear more about what all this means.

Cody seems to be feeling better which makes me feel better. He had his english tutor and I actually left him here with her and went for a pedicure. He needs to start being alone with others too. So it all worked out.

This afternoon we both crashed on the couch and took a little nap. We woke up and went to the lacrosse game at HSE. He saw some friends and the principal and asst principal. He was happy to be there.

We got a call from the person in charge of the outing on Monday. Monday night we are going to NBC studios for a private tour. The place is just open for a few transplant patients. So the call tonight was that they are sending a car to come get us. We are trying to get a few friends to join us. It is hosted by a man whose grandson died of leukemia. So sad but so nice. So we are looking forward to that.

Should be a good weekend. I am getting 2 estimates for the damage and bathroom and then on Sunday we go to the last game of the season for the Islanders. Hope you all enjoy yours.

APril 8, 2010

Thursday-I was up early so I could be ready for John the Plumber. He got here and had to rip a bigger hole in order to see the leak. Thank goodness we found it. Now just have to figure out what to do.

Cody slept pretty well, he got the new med last night. He did well last night and today as far as diarrhea goes. He is very frustrated with the eating part. He wants to eat again but does not know what he wants. He asks, I make it and then he takes one bite if we are lucky and is finished. Today was another example. He wants TGIF's sesame chicken so hoping to go there tomorrow. As for me, I have no problem eating. Not good. Not happy with the way I look. UGH. He had his math tutor, took a nap then we got out hair trimmed. You can see he got a mohawk. It looks good. Jerry did a great job, thanks for fitting us in!! Then he had his spanish tutor and he did really well with the practice part for the regents speaking test. (Perfect scores!) We took a ride and he drove and we went to see Jean who was hanging around. He did really well driving. So we are sitting here tonight watching the Islanders play and Cody's player is out due to an eye injury. It is not the same without him playing. I miss him. I do hope his eye is ok too. We go to the last game on Sunday.

I have heard the nice weather is ending. I surely hope not. We are loving it! Have a good Friday my dear friends...oxoxoxo

April 7, 2010

Wednesday-It was a hot one! Nice for April but a little too early.

We were really tired this morning so we canceled the science tutor. We took a ride to Target to get a few things. Cody will go anywhere if he can drive. :)

We tried the 5 Guys place. We had not been there. Cody is not eating again so he watched me pig out. He had his social studies tutor today and did well. I went to visit next door and when I came back in, it looked like maybe an ice cube had melted on the kitchen floor. Not unusual since I give them to the dogs. Then I feel this drip. Now my upstairs has an old bathroom and it does need remodeled. I do not use the shower, that leaks so I use the tube, sink and toilet. Well, I look up and the ceiling is hanging. I get a broom and touch it and it falls! Yes, there is a whole there from leaking over time I suppose. So I clean up the mess, make a call and cover the area with a garbage bag. I feel like I could really qualify for Extreme Home Makeover now! I have a friend/former parent/plumber from SH coming in the morning. Guess I will have to re-do that tub at the very least. Just what I need now.

I have been emailing the drs and the team at Sloan decided Cody should go back on the med he was on back in July for the rejection. They said it failed and caused diarrhea but I think they are wrong since he has had diarrhea all along. So we took that last night and will hopefully be ok without more diarrhea. Time will tell. I hope it works.

We had a quiet afternoon/evening.

April 6, 2010

Tuesday-The day started out pretty good. Cody did have some blood last night but it was not a lot. We got to Sloan relatively quick, left here a little later. It was a tough meeting. Apparently now that the slides were sent to Duke, Cody does have GVHD according to them. They have more experience with stem cell transplant patients and this is what it looked like to them. Not sure if Cody was upset about this or about "being normal" but the tears came and of course for me too. He wants to eat out and be a teenager. I know this is so hard for him and it breaks my heart. He calmed down and got his antibiotic and I ran downstairs to find an ATM machine. We decided to go to the Javits Center and go to the car show. Cody seemed like he really wanted to do that. While I was downstairs, I ran into Steve McGowan. His wife, Dina teaches at WH and I had their son in kindergarten. I knew that she was sick and it has been a few years now. I can't describe the feeling you get when you see someone you know at Sloan. We talked for a few and Dina was there as an emergency. She was actually in FL and the trip was cut short. She is ok but going through so much too. Please add her to your prayers too.

Anyway we did go to the car show and Cody got to ride in a mini cooper. Those who know Cody well know that this is the car he dreams of having. He was thrilled to take a test drive and then sit in a few. They had an obstacle course set up with jeeps so we rode in one of those too. That was impressive. We got in the cab to head back to Sloan and Cody said he had fun. Once home, I think it all hit me. I hold it together for Cody as best as I can but then once I sit down and relax, it all comes out. I am thinking maybe we need to go to Duke and meet this doctor. I emailed both of our drs and will see what they say. Right now, there is nothing more that will be added to help Cody. They kinda said 'time will heal it'. It is not new, he has been dealing with this for a long time so we are doing what we need to do so far. Just wondering if maybe Duke would do something more. I have some work to do. Pretty upset but will get through this. Thanks for reading...oxox

April 5, 2010

Monday-Well, since I have been letting Cody drive, he was up very early and was ready to take a drive out to Riverhead outlets. I did let him drive and he did well. There were not a lot of cars on the road so it was a perfect time. He got a new pair of sneakers which he needed. We got back home and he napped and then physical therapy. His back is still sore so he got heat and a nice massage. He has not been feeling himself and I could see it in his face that he was hurting. He did not eat again today and was in bed early.

I wanted to mention too, that Cody got a really nice and touching email from his hockey player, Richard Park. He thanked him for the necklace and he was so sweet. He feels he and Cody have this connection and they do but he does not know how much he means to Cody. I am going to have to get real creative here to keep Cody happy and occupied. We hope we can stay in touch and see him over the summer. Cody is very lucky.

I got a nice pic of Casey and Nicole today, thanks Nicole!!!

April 4, 2010

Sunday-Happy Easter. I hope everyone enjoyed their day. We did and we did a lot of nothing. It was hard doing a basket for Cody without candy so he got tshirts, a little bunny and a puzzle thingy. I also got him a lap desk for his computer. It is for your computer to sit on instead of your lap. He had a good day. He got to drive a little and he took a nice nap. My hunch is he is tired due to the steroids coming down. I hope it is not anything else. We go back on Tuesday so we will know. We were going to make a dinner here and he would nibble but instead we went to eat with his dad and stepmom. A little too much for me, but once again, I got through it. We were able to go when we wanted and leave at a decent time. I am pooped and I did nothing. Guess that is what holidays are for. Hope you and yours had a nice day!

April 3, 2010

Saturday-Cody had a good night and slept late. He was up and in time to go to the game. Before we left, I got a text from the Dalia's. They were nice enough to send their yard people over to do a clean up in my yard. It was really nice of them. OXOXO to the Dalia's.

Well, it was another spectacular time at the coliseum. We had great seats and found out we were sitting in the family section. There were a lot of recognizable faces and when I asked our friend there Jeff, he confirmed it was the section for the players families. A few seats down, I spotted Richard Park's wife and kids and family. I pointed it out to Cody and he asked if he could go say hi. He was so cute and wanted me to go with him. I told him he could do it and he was rehearsing what to say. I tried to explain that the conversation would just flow and that he could do it. So he hobbled past everyone and went over. Of course she was delighted to say hi and he met Richard's sister and his kids. She told him that she knew all about him and that Richard actually got a tan line while they were away on vacation from wearing Cody's bracelet. He was thrilled! I brought two little chocolate bunnies for his kids today. Cody gave Richard a necklace so I threw the bunnies in. He asked if he could go give them to the kids. So he hobbled back over a 2nd time and he was so proud of himself. I was so proud too. I could hear his confidence when he was telling me what she said. It was a great game with the Islanders winning. We went down to the locker room area and waited for Richard so Cody could give him his necklace. He gave the new guy, Gillies, one of his bracelets so he came out too. Cody really feels at home there. Everyone says hi to him from Sparky to the players. The staff and the players and the coaches know him now and he just beams. It is so good for him and I know he will miss it once the season is over. I am pretty sure he will keep in touch with Richard and he hopes to see him sometime, maybe take him to lunch. He would be on top of the world for that. Thanks to the Islander family. We are very lucky.

April 2, 2010

Friday-Well, Cody pulled it off and feels fine. There was no fever during the night and he was good all day. Maybe a little more tired than usual but not feverish. The biopsies still say no cancer, no GVHD and no infection. They are still being sent out to other drs to read but so far there is nothing. It was a beautiful day here today so we thought we would try to take Xena to the dog park. She did well. Cody enjoyed just looking at all the different dogs. I did some things here today including breaking my cell phone. That is always a fun expense...NOT. Then Cody decided he wanted to fondue tonight. This is where it gets interesting. His dad and stepmom were coming today and guess who fondued with us? It was just too cozy. The thing is, I can grin and bear it and I do this for Cody. Is that what I wanted to do? No. Did I have anything else to do? No. The main question is did Cody enjoy it? YES! So I got through it. Tomorrow we are all going to the Islanders game. At that point, I know it will have to be enough. Have a 'Good Friday' everyone.

April 1, 2010

Thursday, Happy April Fool's Day

The night and day were not so great with Cody. He was up with diarrhea during the night and he had back pain. I was not sure where the pain was coming from but after today I figured it out. He climbed up into that zamboni the other night and I think he may have pulled something. It got stiff during the night. He woke up around 9 and had a slight fever. I was on the phone with the NP's about 6 times today and we decided to wait it out since the fever was never really over 100.3. I have to keep checking it but so far so good. I got Cody into physical therapy around 12. He got a massage and they applied heat to his back. He was not himself. We got home and he went back to bed. This had me worried. I checked him at 3 and he perked up a little. I got him out and we took a ride to watch the dogs in the dog park. He used to walk Xena there. It was a nice day out. We took a longer ride home and he stayed up till around 8. He did not eat anything today but that is ok since he has the tube. Just not like him since he has been eating. SO I will keep a close eye on him tonight and try to sleep. Hopefully the fever is from coming down on the steriods. It is a lot for him right now. Let's hope for a good night. Sweet dreams.

P.S. Cody is definitely putting on weight but the puffy cheeks is from the steroids.

March 31, 2010

Wednesday-I think we both were wiped out from out two days of events with the Islanders. Last night was a late one for both of us. We hung around most of the day. Cody did not feel like eating today and was tired. He did get a drum lesson in which was good. I did some baking for Casey and have to get his box out tomorrow. I got letters from him and he said we would talk on the 9th. The day went well and we are looking forward to the sun coming out tomorrow.