June 30, 2010

Wednesday- What a long day and a tough one. Cody feels like his butt might be getting better. We are doing the sitz baths every bowel movement. Trying to be aggressive. But today his back spasmed again or whatever it does and he cried out in pain so loud that the dogs barked. I felt so bad for him. He cannot walk without assistance. I went to 110 Pharmacy 3x, Rite Aid and Harmon drugs to look for a back brace of some kind. Got the one at 110 but did not get right size and then it was just too uncomfortable. He ate Subway again and did pretty well. He drank a little too today. I had a hard day but then again, I am entitled to it sometime. It is all on me and it is taking its toll. I have to be his 24/7 person and then his nurse. Lots to do with just housework and then add all this. But somehow we do it. We just do. I actually fell asleep on the couch today and did get to sit out back for an hour. The sun felt good. I had a nice talk with my sister in law today, Veronica and she just went thru a nightmare herself but offered all kinds of support for me. I have not called anyone as I am just tired and so consumed in Cody's care. Cody is running a light temp so hoping it is just from the decrease in steroids and not an infection. Not sure if he will spike or if we will have to go in tonight. Please add an extra prayer there too.

I hope everyone got out a little to enjoy the nice day. Happy 1st Birthday to Aidan Short today!

June 29, 2010

Tuesday-Today my dad turned 71. I do not feel my age until I hear how old he is. Guess I should be feeling it soon.

It was a not so good day at Sloan. Cody has developed two areas near his anus. This email from the dr explains it best:

Put all this discussion aside. He has an area that has eroded from all his stooling and the immunosuppressive drugs. The erosion has caused what is called a “fistula”, the holes that you see.

He must do the sitz baths and we need to keep tapering the immunosuppressive drugs as quickly as he can tolerate- prednisone and budesonide first; then sirolimus.

IF a patient does not heal with sitz baths and decreased doses, we very rarely have to divert stool from the area temporarily to allow the area to heal. The diversion is done by doing a temporary colostomy (or bag for catching stool on the stomach wall). This is not even in our thinking for now and I hope never, as he has been tolerating the decreases in prednisone pretty well.

Sorry for misunderstandings.

Take care,

Dr. Kernan

I feel really bad as this may prevent us from going to see Casey. While I know Casey will understand, I know Cody feels awful. He and I are both upset by this but like he says "It will all work itself out".

We really need a break and this has to all fade at some point. He feels bad about making me miss things and always taking care of him. I am just tired and I guess sometimes it does come out. He is such an amazing young man and we should all learn from him.

Keep up the fight, Cody!!

June 28, 2010

Monday-Today was a day to hang out and it was fun. We had Tom here, Cody's friend and we went to get pizza for lunch. Then he and Tom hung here and Nicole came over. We watched movies and played a few board games. It was a good day and one I will remember. Thanks guys.

June 27, 2010

Sunday, YES, we are going home today. We got home around 3. Cody did not need any pain meds during the night and he just looks so good. He has more freckles too! Seems to be a little better. Guess it will take time. Good to be home and trying to keep cool. Thanks to the Dalia's for the extra ac! Phew we needed that. Gonna be an early night for us. I feel beat up and so tired. Thanks for all the good karma and thoughts...we love you all!

June 26, 2010

Saturday-It was a rough night and Cody woke up with pain. I got him to take a tylenol with codeine and it kicked his butt. He went back to sleep until around 2 and was up in time for the soccer game that USA lost. He felt good and his uncle came up. We took a walk up to the 15th floor and sat outside and then he showered and wanted to get back to bed. The dr came, a different one and said she feels like she is in the middle and that it would be best to have him stay until tomorrow. So let's hope we get home tomorrow. He did not need pain pills during the night but was a little sore when he woke up.

June 25 2010

Friday-Woke up after a rough night and lots of pain. NP called to say the culture taken from Cody's butt grew positive for an infection. So we needed to get back to hospital and be admitted for antibiotics. Cody is very upset and the draft party was for tonight. It was with the Islanders. So here we are and I will update later. We saw the team and one of the drs and they made us feel it was pretty yucky down there. I did see the swelling and it looks so painful.

Long day with a lot of pain. A dr from the team came and the surgeon this evening. They were not so concerned. Said it is an infected fissure and that he could go home tomorrow. I know that probably will not happen but we shall see. Long night ahead I think.

June 24 2010

Thursday-Today was a busy one. Cody went to physical therapy for a massage and heat. I think it helped his back more. But his bottom is really painful. Then I had my drs appt to begin getting my shots to head back to work. The drs do not want me to bring anything home so getting checked to see what I need. Got 2 shots yesterday-ouch. Cody ate at subway...again and did pretty well with it. We left around 5 with Nicole to head to the Ducks game. We got there and went to a suite which was amazing. There was all kinds of food and drinks set up and everyone was sooooo nice. It was pretty hot so there was a/c there and couches. Cody was pretty uncomfortable but he stayed the entire game. Retired Mets player, Buddy Harrelson came to hang in the suite. He was a nice guy and did lots of autographs and hung out with Cody and Nicole. I found out a bit more about Contractors for Kids and what they are all about. What a special group of people. I cannot say it enough. They would do anything for Cody. I hope we can give back one day. The night was pretty rough with Cody very uncomfortable and in a lot of pain. So not much sleep.

June 23 2010

Wednesday-We had a horrible night of sleep. It is 9;30 pm now and I can barely keep my eyes open. We ended up having a long day at sloan. We got all the bloodwork but then were discussed all the pills and the fissure on Cody's bottom. It has gotten infected and much more painful. They are scheduling an exam with anesthesia for next week to see how bad it is. Maybe the antibiotics will heal it. It sure is pain and I sent him to bed tonight with tylenol and codeine. He also found out he did not pass spanish. Understandably so with how upset he was. He will take it again in January. He is very worried and upset. We had therapy tonight with his dad and that was ok. Cody ate again at subway and is eating more each time. So off to bed now and hopefully I will sleep better. Stay cool my friends...oxox

Please say a special prayer for a friend of mine. She was at Sloan today and is having a tough time. My sister in law also lost her dad today due to a stroke. You are both in my thoughts...love you

June 22, 2010

Tuesday-Well, today started out horrible. I had to tell Cody about not passing the math exam and he was devastated as I thought he would be. Math is his strong point and he was so upset. I talked him through it and he had his spanish exam. He felt it was ok but not sure how he did and being in all the pain, did not help I am sure.

To take his mind off it, I took him to the movies. He asked his friend Tom to come. It was a good idea and later Cody thanked me.

Off to Subway again although I did not eat. I let him have his time with Tom. He enjoyed it. Long day tomorrow beginning at Sloan.

Nite all

June 21, 2010

Monday-Today is my stepmother's birthday. It is also the first day of summer!!

Cody was a bit sore today so he took it easy. We went and got a few groceries and then we went to Subway. He ate a quarter of the sandwich which was a first. I know some of the drs would not agree with him eating there but we are being careful. He ate some snacks, tried chicken noodle soup and had a little salad too. It was a lot for him. I found out today that he did not pass his math regents. It is fine, he gets the credit but will not get the advanced regents diploma. He can still have another chance at getting the advanced diploma if he wants to take another math next year. They are really working with us. He did pass US History and I know it had a lot to do with his great teacher, Mr. Pitman. I hope he can prepare him for Global too. That one he needs to graduate. I did not tell him about the math yet. It was too much today and I will tell him tomorrow. He has spanish so I want to get that over with. He should do well there. We have a busy week and will be glad when Thursday comes. We have the Ducks game that night.

Hope everyone is staying cool!! Phew it was a hot one!

June 20, 2010

Sunday-Happy Father's Day. I just want to say a few words here about my dad. He is the most patient and honest man I know. (If only I could get that lucky!) He has always been there for me but even more so in the past 18 months. I know it is hard for him to be away and I call so upset sometimes and he does not know what he can do, but I know he is there. He always takes my calls and offers his ear. He encourages me, praises me, comforts me, loves me, supports me, is proud of me and loves me. I would not be where I am if it were not for him. Thanks, Dad. I love you.

Today we went to Nicole's and ended up staying there all day. We stopped over at Sue and Craig's too. Cody was enjoying himself at Nicole's. He loves his time with her. So we stayed.

It was a good day.

When we got home, Cody was going up the stairs and his back went again. It is his bones squeezing because of the lack of blood there. He literally fell on the stairs, we were almost to the top. He really did good today and felt well so I think he overdid it a little. He cried and I helped him hobble to my bed. I gave him a valium and that kicked in and he went to sleep. I feel so bad for him.

Hope Father's Day was good for all of you. PS. The pic is with Casey and Nicole's dog, Lily

June 19, 2010

Saturday-We did not do much today. I had to wait here for the oil guy to come as I had no hot water. He repaired it all and we are back in business. We chilled most of the day. I finally buzzed Cody's mohawk off for the summer. His hair is so curly and/or wavy now so it was out of control. I know the grandparents will be happy!!

June 18, 2010

Friday-Cody was up nice and early for his social studies exam. He felt he did not do well on it. He took a nice long nap. I woke him up at 3 and he was better. I went to my work party for a little while then came home to take him to the race track. Cody has a huge heart. He wanted a smoothie and he called to see who else wanted one. So he walked in with like 5 smoothies for the guys there. I left him there for a few more hours and then went back to the party to see my friends. It was so nice to be out and see everyone. It did feel awkward at times, since I was out of the loop but was good to see everyone. Cody did well without me, actually saying he had an awesome time. I felt bad as his car broke in the main race. He loves going and just hanging. Thanks, Mary for the company on the ride. Good to catch up with you!!

June 17, 2010

Thursday-Today started out kinda rough with Cody in pain from his bottom. The tutor was here and he was also nervous about the 2nd part of the regents but I am sure he did well. He got through it rather early and tried to nap. I sat outside with a book and enjoyed the sun for a little while. He nibbled a lot today which was good and seemed to be hungry, actually looking around in the kitchen for food which is a first! He sipped here and there and we have to make sure he does that so he does not get dehydrated with less fluids going in at night.

It was a good day and off to bed early. Tomorrow is Social Studies regent and then just spanish left for this year. Good night all...

June 16, 2010

Wednesday-Up nice and early and Cody took part 1 of the English regents exam. I think he is hard on himself but I think he did well. I have no reason to think this other than he is a smart boy and he got through it so I am sure he did well.

When the proctor left, we were both so tired. It was a nice breezy day and all the windows were open. We both took a nice nap. Mine was cut short with phone calls but I did get to lie down and relax. Cody slept for about 3 hours and felt much better when he woke up.

He hung around and played video games and I ran a few errands. Then we stopped for Subway on the way to our therapist. He got mixed answers about if he could eat it or not and I let him decide. He ate two bites of his fav sandwich and saw the guy in there from when he used to go. I think a big part of him wanting to eat out is he misses being 'normal'. He liked seeing the guy there and I know he has a lot of memories from that place, going with Casey and his friend Tom. We got a phone call saying we could stop the IV steroids and and just do oral ones. So that was a huge help without all of the IVs at night. We are down to one and then the fluids which were decreased too. He has to drink more now and that might be a problem but I can always put pedialyte in his g tube.

We had our therapy session which was good I think. We have a lot to work toward but we are getting there. We decided to try Trader Joe's afterward to see if there might be some new things to try. We got a few things, stopped for a smoothie, then headed home. It was a good day and I will just be glad when these tests are over.

June 15, 2010

Well, today Cody completed the Math B regents exam. Supposedly it is the last time it is being given. They keep changing the math requirements. He is thrilled to have that behind him. After the test, he wanted to watch Portugal play in the World Cup but had to go into NYC for his appt. He needed his 2 infusions and we knew we had a long day ahead. We did not get home until almost 7. Tomorrow is another exam and an early day ahead again. He is doing well on his exams, just think he is hard on himself.

Good job, Cody.

June 14, 2010

Monday-Today was my brother, Peter's birthday.

Cody slept till 12 today and Nicole came over. We headed out to the Contractors for Kids annual golf outing/dinner. We were not prepared for ovewhelming of support we received. We got there before the golfers were finished and sat outside. It was a beautiful country club. Cody said he felt rich there. Once everyone filtered in, we started being introduced to everyone, the board, the president of the company, etc. We sat down for a nice dinner. There were very expensive autographed items to be auctioned off. There was a brief introduction and then Cody read his speech. I have it recorded on my phone so I hope I can get it on here. Then they shared some stories of some brave kids battling cancer and ones they helped. They had this hat there, supposedly it was donated by Martin Short and the started the bids for it. It was increased by $100 then the amount was matched by CFK. It was tossed to the guy that won it and then tossed back for another bid. All this time, they kept saying the proceeds will go the family here, which was us. It was then bid on again for a 2nd amount. And then a third. I was shocked and was not sure exactly what was going on. Next thing I knew, the president was asking me who to make the check out to. I was shocked at the amount!! They called us up and presented me with this huge check. I stumbled through a sort of thank you and we were speechless. Then the raffles came and the auction. People kept giving Cody tickets and he won Mets tix, a golf club and a picnic basket. The silent auction was set up in the other room with bids for autographed things as high as $2000 for starts. Then like a dream, these wonderful men kept coming up and giving him items. Cody got a Superbowl framed print with Joe Namath's signature, a Giants framed print with Tiki Barber's signature and the best was a guitar with Bon Jovi's signature on it. He was shocked and speechless. We were so touched by this group and all were basically strangers to us. Never did we think this was going to happen today. A nice man won a basket of goodies for a woman and he gave it to me. It just did not stop and we are so grateful for this. Cody went to bed last night saying he felt he did not deserve this and that he cannot wait to get better to give back to them. It was amazing!!!

Another foundation called me yesterday that helps me with bills and tolls and parking and asked if I could come speak at their event in August. It is a huge event (400 people) and is in the city and there is a rooftop garden party there too. I feel like this is a way to say thanks and to help these foundations get money to help us and to help others. I am trying to find someone to come with me. Cody is going for sure, but would be nice to have some support for me. Any takers??

Overall, it was a beautiful day. Cody is nervous about his math regents exam for tomorrow but he will do fine.

June 13, 2010

Sunday-well rain was predicted for today. It did not exactly rain but it was ugly and muggy out. I got some help from a friend and we did some yard work. My backyard is like a tropical forest with all the things overgrown. It is getting shaped up slowly but surely.

Cody hung out and relaxed most of the day. We ended up at Friday's for dinner. I am tired of eating out but this is what makes the boy happy. Part of it is just getting out but I am tired of the food.

Hope everyone had a nice weekend.

June 12, 2010

Saturday-Cody slept really late today. He got up and we went Dave and Buster's to watch the soccer game. I wanted to make it fun for you so we went there and of course, I ate. I am eating too much these days! It was a good game and we had fun. Then he wanted to go to the party at a park. He took off and went to hang with his friends and I sat in the car and read. He walked over after about an hour and needed a sweatshirt but ended up just leaving. He said it was kinda boring so we came home and got to ready for bed early. Nite all.

June 11, 2010

Friday-Today we hung out at home. Cody had his last time with his English tutor. He did well too. I think all his anxiety will be for nothing and he will be fine.

We got a call from the nurse practitioner and discussed the results of Cody's MRI. It looks like he has something called avasular necrosis. It is when the blood does not go to his bones. It is from the steroids. We will get more details when we get the appt with the orthopedist. We are controlling the pain with tylenol.

We went to the race track tonight but it was boring. We left kinda early. Cody had a good time hanging with the guys there. Before Cody went to sleep I said to him "can you believe all we are doing?" He said he always thinks of Tyler when he feels his life is so bad. (Tyler was my student that lost a tough fight to a brain tumor.) He is an amazing young man with a huge heart. He is happy about life and continues to fight on.....I am so proud of him.

June 10, 2010

Thursday-Today was another intense day of tutoring. Cody had math and spanish. He will be fine with both of them but he worries about math. Either way, he gets the credits which is what he needs. If he passes this tough math regents exam on Tuesday which he will, then he will get an advance regents diploma when he graduates. No big deal either way. It is simply a sticker on the diploma. Today someone asked him what he wants to do when he graduates and he said he would like to go to Hofstra and then work for the Islanders. I would be happy with that for now. He can be close to home and will get to be with the Islanders. Look out Jeff and Ann!!

Later that evening he took a short ride with his dad and then came home and crashed. Pretty productive day.

June 9, 2010

Wednesday-Today Nicole was with us. It is nice having her around. Cody really enjoys his time with her. We hung around and waited for the guidance counselor to come over. She gave us an overview of what is required and where Cody stands as far as credits go. Cody is in a good place and looks as those he will graduate with his friends next year. He is very anxious lately and gets upset easily over this. Heck, I do too. Once next week is over, he can rest as far as school goes.

Today he also has his last day with Social Studies. Mr. Pitman is so nice. He left and invited us over for a picnic. He said he has talked to his wife and his little boy about Cody so much that he would like us all to meet. That brought me to tears, of course. He is a great guy and we were lucky to have him. Cody and Nicole went to dinner with Cody's dad and it was nice to see him driving off with Nicole.

June 8, 2010

Tuesday-We did not have to be at Sloan until 12 today so we left here at 10:30 and flew in, no traffic at that time. We did the bloodwork then met with the team. He is begging them to let him eat out. He went for him MRI and he did it without Valium. I go in with him so I keep a hand on his foot so he knows I am there and he did it. He moved a little and his back was hurting but he did it. Hopefully we will get some kind of results and help him with his back pain. We met his dad there and that made us later getting home and tons of traffic. Another quiet night here. Meeting his counselor here tomorrow.

June 7, 2010

Monday-Today was a slow day. We hung around with Nicole today and then Cody had a tutor. It is the last week of tutors for him and then next week is regents exams. We got a call today from a foundation that has helped us with our oil bill 3x! They want Cody's picture and permission to use him in their brochure. So cool. Then they gave us tix to a Ducks game which will be fun and something to do. Nicole is coming with us to that. The girl is really nice and called back with something even better. We talked and I told her about Cody doing his speech and she invited to come next Monday to their annual golf outing for the cocktail hour and dinner and Cody will speak there! We are so excited to do this and Nicole is coming too. He said he felt good after his speech last time but did not feel it was good enough. Now he gets to add more and change it up a little. I am happy for him and I feel this is part of the healing too.

Today I met with a new therapist. I honestly felt good and was thinking I did not need to go. But it offers me time for just me which I do not get any of. I will go every other week and see how it goes. The first visit is always awkward but the girl was nice. She gave me a hug as I was leaving so I thought that was special too.

June 6, 2010

Sunday-Today was HHH and Relay for Life. There was a survivor brunch and Cody spoke. He had a speech written and did well. His back is still hurting him so we are working with that. Sue, from next door game and we were glad to have Nicole there. It was a nice event. Then we came home and changed clothes and relaxed and then went back so Cody could hang with his friends. He had a good time. We went back for closing ceremonies but there were none. The weather was threatening so they called it off early. We went to eat and Cody nibbled. Then Nicole made him pork fried rice which was better than mine. He loved it. He nibbled on pineapple too, more than he has eaten in about 2-3 months! No more positive cultures so hoping that was an invalid culture. It was a nice day and good to see so many survivors there. There is lots of hope.

Cody was represented across the country too. A friend's daughter was running a race for leukemia today in San Diego and decided to do it in honor of Cody. She did well and wrote his name on her arm. It was very touching. Thank you, Kelly. Beautiful heart.

Hope the weekend was good and have a good Monday.

June 5, 2010

Saturday-Well, I had hoped today was going to one in which I could get things done here. But I got a call at 9:30 am telling me that one of Cody's lines grew positive cultures again. We needed to come in for bloodwork. So off we go to Sloan. Cody called his uncle and asked if he wanted to meet for lunch. We went to a farmer's market a block away and then we had to rest because Cody felt his back going again. We sat and then walked to a nearby restaurant and had lunch with his uncle and then took their 2 yr old to a park for a few minutes. It was a nice diversion. Now just hoping we are good for tomorrow. If anything grows, we will hopefully be able to do the speech and then go in for the bloodwork. Let's hope it does not grow. We need a break. Nicole comes in late tonight we is going with us tomorrow to Relay. So is my neighbor Sue. We are looking forward to it. Stay cool and sweet dreams.

June 4, 2010

Friday-Today was a big day in our world. First of all, it is one year since Cody's transplant. We got the results of his biopsy and all is good. We are thrilled with that. We were discharged today too which is always good! And we got the call that Casey passed the part of his ranger school that he has missed 2x. He was thrilled, I am thrilled and I know Nicole and Cody are too. All good news today and all happy tears. We got some orange balloons from the Dalia's. Orange is the color for leukemia. We are really happy and glad to be home! We took a ride to the race track and said hi to the guys then came home to do all the meds. There is a new one and it is more time consuming but no big deal. We are looking forward to seeing Nicole on Sunday and the Relay for Life event. Have a good weekend.

June 3, 2010

Thursday-Today was a long day. We were waiting around all day for blood work. We got to go up to the 15th floor and we hung out. We met with the massage therapist Rocco and I learned some techniques. Cody sat outside and got some fresh air. Then we went back up to the room and Cody took a nap. His uncle came by and my friend too. It was a good day. We enjoyed seeing all of our nurses and nursing assistants and they were happy to see us. We are hoping to go home tomorrow!

June 2, 2010

Wednesday-Today we were up and had procedure at 7:30 this morning. Cody got up and was ready to get this thing out. He did well and then we had to wait for an xray to make sure the new temp line was in place before it was used. That took all day. Today was prom day here and we could not go but watched it on TV. It looked fun. There were prom activities and people coming around all day. The drs came in and told us that they identified the organism that is growing. We have to figure out how to treat with with infectious disease dept. I am concerned but I am convinced they will know how to do this. I was not too happy with the dr on service saying I needed to brush up on my sterile skills to make sure this does not happen. Well, I am not the one changing the needles!

So Infectious Disease came tonight. There are two issues. One is to make sure this organism did indeed grow from the port. We will know this by negative blood cultures now that the port is out. We may have to be here until Saturday. The down side is that it could come from his gut and could be a bigger problem. The 2nd issue is that the drug to treat this orally can interact with his anti depressant which he needs. He has been treated from a previous infection with the two but that does not mean that this fatal reaction would not occur. The antibiotic he is on now is working but it only available through IV. I do IV's at home so not a problem and I feel much more comfortable with this drug rather than the one with the possible life threatening side effects. To me, it is a no brainer.

I hope this all makes sense. I am going to try to get some sleep. I am really tired but I have a lot to digest. Let's home for clearer answers tomorrow.

June 1, 2010

Tuesday-Today is June 1, 2010. We are still at Sloan and Cody's cultures were positive again for a bacteria. We waited all day to find out that we are removing his port tomorrow morning at 7:30 a.m. He will be getting a temporary line in and I am really hoping that maybe we will not need a port at all. We shall see. He is feeling much better and is in better spirits too. He likes to see all his fav nurses here but hates to be back. Bittersweet. I ran home today and he texted me that he got a message from Richard...He was thrilled!

Let's hope for a perfect procedure tomorrow....nite all