December 31, 2011

Happy New Year's Eve...been home with Cody. Debating last night and today on whether or not to go to Sloan so they can listen to his chest. He is getting better, slowly I think. Just an awful cough and trying to get stuff up. We go back on Thursday for a re check. Nice quiet night at home. We watched hockey today and about to watch a movie before the good shows start tonight.

Here's to a happy and healthy 2012!!

December 30 2011

So not the best day yesterday. After getting home from the port removal and g tube changed, we started up the feeding tube only to find the new one is leaking. They changed it under anesthesia because of what happened a few months back when they went to change it and it was off track and he went through hell until they finally had to put him out to do it. He got several immunizations including the dpt. So we used the feeding tube and had a washcloth to catch the leakage and then our plan was to go in in the morning for a change. We kept it without food or drink after midnight in the event they needed to put him out.

He was a mess anticipating the worst.

So we are driving in yesterday and he is telling me he is really thirsty, understandably so. So once we got in and were at the elevator after a long walk, he is feeling worse, and I am thinking he is dehydrated. We get up to the floor and he is not feeling good. His heartrate was high and his pressure was low. And then the fever comes. He does this huge cough in the exam room and they swab his nose and to see what that is from. So we start some fluids and his blood is taken. His counts come back pretty good, not really dehydrated. We checked the tube and it is not leaking. Surgery checks in on us twice and we find out that he cannot get anesthesia today. So he starts perking up little by little. Finally the dr that changed the tube yesterday convinces us that she can do it in under 10 seconds, which she does but he is a mental mess anticipating the worst from his prior experience. Two drs come in and set up. The change is not painful, just feels like your insides are being pulled out through this hole in your belly. He is silent. It is done and it is successful. He starts to cry once it is done. It was so stressful last time and he was so nervous. He talked to his dad and the plane was switched to Saturday supposedly. Then we are preparing to come home and his regular drs come in to say he has rsv virus. This is contagious and could get worse before it gets better. He is not happy and this was the day we shared a water bottle, great! So now we leave and he is upset about missing his trip but he really can't go. So he tells his dad and that is canceled and we make the ride home. His fever spiked again but he does not seem any worse. He is still sleeping of course, so we hope the day is ok...wish us luck and stay healthy. Hey, I am always better when he is here, but not when he is sick. :(

December 28, 2011

Mediport is out!! All went well. Still concerned about the non weight gain but working on it with the feeds. Still have the g tube for awhile. He had a long talk with Dr. Small today. She is great! He is worried about his weight but she gave him a huge pep talk.

Through one of the support websites, I connected with a family and they had a daughter Cody's age going through the same thing. She is the same age as Cody and actually did the graduation with him too but they did not really know each other. Anyway they connected on facebook and finally met today. She is from NJ, orginally from Israel and is a beautiful girl. She does not walk so well and is in a wheelchair. Maybe they will keep in touch. Sweet!

Home and he is sore. He also got some shots, DPT, one for meningitis and a inactive polio one. We did it while he was still groggy but he felt it. He feels beat up tonight.

Started his feeds early and guess what-they changed to g tube and it is leaking. We did a little test at home but nothing helped so we are going back in tomorrow to have them look at it. Not happy and he is very anxious about the change and not be under anesthesia. It is not painful but he had a really BAD experience. Since it was changed today, and all went well it should be fine!

We are not eating or drinking after 12 just in case they need to do it with anesthesia.

Cody's cousin's were there today too.

Long three years and glad we are moving ahead.

December 27, 2011

Tuesday-so the holiday festivities have ended. I was able to hold out the surprise and Cody did not know his brother was coming! Cody came to my school and then Casey and Nicole came there and surprised him! It was great. I think Cody was in shock. They had a very short visit but we had fun and it was great to have them here. We had Christmas dinner with Nicole's family and then said a tearful goodbye ( I always cry) when we left them. They are back home safely.

Tomorrow is a huge day for Cody. He is getting his mediport out! It is a huge milestone in his recovery. Next is the feeding tube so we will see what they say about that. He is taking ensure through it and no longer the recommended solution he was on for 2 years. It is time to get that out but he is worried so we will see what the drs say.

He did VERY well his first semester at Dowling! He got two A's and a B+ and a B-!! We will take it! He was very proud of himself as he should be!

He leaves Friday for a week in Canada with his dad. I already miss him. He is flying alone and he will be fine!

It has been a nice ending to 2011. I pray for good health and happiness for 2012!

December 20, 2011

Tuesday-Busy and hectic week. Tonight Cody went to the new race track. I am really trying to get him out there and to do more on his own. I realized something as I was talking to my dad. I think the reason he is not really making friends at school is that he does not have much in common with them. They are doing the partying/girl, etc thing and he is not there yet. He goes where he feels comfortable. At the coliseum, he has the Islanders in common. At the race track, he has the cars. He needs to have something to keep it going. The school thing might come but it will take a little while.

I am very excited about Casey and Nicole coming and I cannot believe I kept it a secret. I have their presents hidden upstairs. Cody has no clue whatsoever. I wish I was going to be here when he gets here. Trying to work that out.

Until next time....

December 14, 2010

Three years ago, my life changed forever. I battled the most difficult fight of my life. When I took Cody in for bloodwork, never in my scariest dreams did I think they drs would give him a diagnosis of leukemia. I did not even know what leukemia was. One could never prepare you for the moment when you hear those words, 'your child has cancer.' Cody faced it head on with so many challenges along the way but and I only heard him one time say "why me, mom?" He fought and struggled and dealt with all that came his way. He was upset, scared and sick. I know I could not have done it the way he has. We worry about the future as one does with this disease and continue to pray each night. I pray that his strength and our positive thoughts will always prevail.

We talked about what we wanted to do to celebrate his 3 yrs of surviving and he chose "The Melting Pot". We took Casey there back in June of 2008 for his graduation from high school. My brother, Roy was in town for it. He has not been able to eat there because of the raw food and his immune system. We had a very nice and quiet dinner.

I have a few emotional moments today as I do around this time of the year. I think back to all those that were there within hours of hearing the horrible news and it brings me to tears. I was not in a coherent state but I do know each and every one that visited or called or texted or emailed. This is what kept us going. I read the facebook comments and I am grateful. I read what Cody wrote today and then saw a response back from an Islanders player and I was so touched.

He has come a long way. Tomorrow will end his first semester of college, he interns, he took a trip to Canada this summer and will fly there later this month. He drives and is functioning on his own. He is lacking in the friends department but I am confident that will come soon. He has some catching up to do.

I hope someday that this will be behind us and I pray for the families I know that are dealing with this awful disease. There is hope.

Love you lots, Cody and keep going strong!!!