April 27, 2011

HAPPY BIRTHDAY to my baby! Cody is 18 today! What an accomplishment. Where did the time go? He woke up with a smile and feels pretty good about himself. He went to school as usual and had a great day. He wanted to go to Gasho's tonight, the hibachi place. It was nice, just he and I went. He is such a mature young man. I am praying tonight REALLY hard that he passes his driving test tomorrow. We went driving tonight and he is really nervous. I hope he holds it together. We got a call from Casey today too and that always makes us both smile. He sounds great!! I actually started looking at 'mother of the groom' dresses for his wedding in October.

On Monday of this week, Cody and I went to Dowling and registered for his classes. He is thrilled! I am hoping for a smooth transition for him.

We spoke to Uncle Jim and little Matisse was admitted last night with a rash and a fever. Doesn't sound like much but hoping he gets home and soon.

I heard a sweet story today from a colleague of mine. I have worked with her for all of my time at SH and she has told her daughters about Cody. They knew him from his visits to SH years ago. Anyway she said her girls were praying in church this past weekend for Easter and her youngest made sure to say, 'don't forget to pray for Cody'. It brought me to tears. There is some power up there. Not sure why these things happen or why these things happen to certain people and I am sure I will never know. But I do know, it makes us all stronger and there is power in groups and in praying. God Bless and Happy Birthday to my boy!! Love you lots!

April 24, 2011

Happy Easter! Well, we did it. We survived a trip to FL and there were no complications whatsoever. We had a good time seeing the family. I enjoyed my early morning beach walks and relaxing and Cody enjoyed sleeping in. He caught his first fish, matter of fact he caught 5 and no one else did! He was so excited. He got to swim in grandpa's pool and saw all of his grandparents. He played with his cousins and loved his time with Uncle Roy. We saw Roy in a SWAT competition and Roy is a great shooter. His team actually got first place! We were all proud. I got to see a few old friends from high school. We went to a tiki bar and had a ton of laughs. I spent some time with my buddy Gregg and it was nice to see him again. I had a birthday dinner with the extended family on my dad's side. The highlight of that day was getting a call from Casey! I miss him. It was the first time Cody was down there without him too. It was a fun time and I really miss south FL. A lot has changed but I do have the urge to go back. Always good to get home and so thankful for being off tomorrow. Heading to Dowling to get the loans and classes straightened out. Busy week with Cody's bday on Wednesday, BIG 18 and he is taking his driving test on Thursday. Hope everyone enjoyed their Easter and Passover holidays!!

April 18, 2011

Monday-So today we had our visit at Sloan so that we can be all cleared for our trip to FL tomorrow. We are flying down till Sunday. I think Cody is nervous but he will be fine. He has been enjoying riding his bike and is doing well. He rode 4 miles the first day and it took him a day to catch up. It was a lot. Today he did 2 miles and that was more his speed. He got a great report at the hospital and just a small concern with the nausea. They wanted to maybe do an MRI to make sure there is not swelling in his brain. He is nervous about that for sure but I do not think that is the issue. He ate better today and was upset that he lost a little weight. He will catch up. So flying out VERY early tomorrow but will be a nice few days in the heat.

Happy Passover and Happy Easter to all. oxoxoxo

April 13, 2011

Wednesday-Today was Cody's MAKE A WISH! He got a sweet bike and tons of accessories. My friend Moira came with us. Cody got fit with pedals, helmet, clothing, shoes, etc. He had a blast. We went to dinner in Huntington and had a great time even though Cody did not feel like eating. He had a great night. Thanks to all of those at Make a Wish for all your patience and support. Thanks to Bill at Cycle Fast for all your help!! Fun night!! Love you, Cody.

April 12, 2011

Tuesday-So we had a few rough days with Cody getting sick on Sunday but we are hoping it is just a reaction to stopping the sirolimus. He feels much better after a day of rest on yesterday. He went to school today and is just dealing with some sick rashes. Hoping we get the right cream for that.

So I was just sitting here tonight and looking through the photos of the past few years. I keep trying to look and see if there were any signs of Cody getting sick. Back in Sept. 08 when we were in GA for Casey's bootcamp graduation, I know that Cody was sick. I actually took him to the dr in GA and he got an antibiotic. He was more tired and continued to be crankier than normal but who would know? Aren't most teens like this? The past 28 months have been full of pain, emotions, questions, and uncertainties. I am full of worry and I hope some day this too will be behind us. I don't want to worry any more. Tomorrow Cody is getting his wish for "make a wish". What an amazing foundation. We found out the hard way how important foundations like these are. The Ronald McDonald house is another one. We are going to the bike store and he gets a shopping spree. He is getting a racing bike with accessories. We are getting picked up in a limo and then to the store then out to dinner. Our friend Moira is going with us. She is the one that keeps our dogs for us and with her, we would not be able to have our pets. It will be a fun night but sure makes me reflect back. It brings me to tears but so glad we have come this far and that Cody remains to be cancer free. I will keep praying. Thanks again to everyone who reads this and for your continued support. We love all of you.

April 8, 2011

Wow, this week flew by. Today was a HUGE milestone for Cody. He took a car service into the city and went to his dr appt. His Uncle Jim met him there but he did most of it by himself. I am so proud of him! And he was told he could discontinue the anti rejection medication! This keeps him from being allowed to eat strawberries and cold cuts. He is thrilled!! We are moving along. We went to the last home game for the Islanders. The lost in a shootout. I am off to bed. Long day and Cody is doing his 5 hour driving course tomorrow. Sweet dreams all!!

April 5, 2011

SO home now and it was a short stay. We stopped the linezolid and there was not any nausea while we were inpatient, thank goodness. I think we have it under control. Cody looks great and feels good. He went to talk to a patient about gtube placement and he did really well. We got to see Matisse yesterday too as he was there for more chemo. He is doing well too. We got home around 6 last evening, got settled in and went to bed early. Cody decided to stay home today and I should have stayed with him. I am dead tired. It was a very busy day back at work. We got the dogs back. We went to dinner with Moira and just are so thankful for her. The dogs do well there and love her and her pets. We are very lucky to have her. And Cody got to ride in her mini cooper so he was thrilled! So just worked on report cards and getting into bed here shortly. It is almost 9pm and all is well here. Back to school tomorrow for Cody. All is good here on Piermont!

(One pic is of Cody and his cousin, Matisse getting ice here in cafeteria at Sloan and the 2nd one is one of the units of blood going in.)

April 3, 2011

So not great news. Here we are back at Sloan. We had been adjusting Cody's feeds and trying to make it so he is not nauseous in the mornings. So the plan for Saturday was to run the feeds Friday night till around 12 and then see how he is in the morning. He woke up without nausea and we started the feeds again. He looked and felt fine. We had a full day and he ate lunch, took a nap and did a driving lesson. Then we went to the hockey game. He seemed a little tired but had a few busy days. We took the walk down to the locker room after the game. We were standing talking with Josh, his player and he asked to go to the bathroom. He did not have to go but did not tell me this, he needed a place to sit down. He came out and was white and said he was dizzy and that he needed to sit and kinda collapsed in my arms. Josh scrambled for a chair for him, then Ann, our good friend there, called the paramedics that were still there. We got Cody to a chair and checked his pressure which was low. I called Sloan and he was in the ambulance being transported here. They had to put an IV in while in transport, his pressures were not good. Once here they did bloodwork and his hemo was low and platelets were a little low. We were in Urgent Care till around 5am. He got some antibiotics and a stress dose of steroids. We both tried to sleep and got a little but then go to the room and he needed a transfusion of whole blood. No reactions, thank goodness. It has been a long time since he needed it. So I am sitting here now, waiting for the drs to give us the plan. I will be back later...