Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Friday, October 9, 2009

It is always an eventful week when Nick is on steroids. We just never know which way his mood swing will go. Tuesday he went to Prospect Hill and did great. The teachers said he was a little sad, but then played with his friends. On Wednesday he had his big play date with Michael. It has been a couple of weeks since the boys have played together and Debbie bravely took Nick for the day. I know Nick had fun playing at his house and then going to Michael's school to pick him up. (Michael's full day) Nick was so tired that night when he came home. It was funny because he walked in the door and told everyone to be quiet (we had auntie Michele and Uncle Norm over) and then fell asleep on the couch in about 5 minutes. Thursday was a rough day at school for Nick. The nurse ended calling (all the phone numbers we gave her) and eventually got a hold of Greg. He was feeling 'homesick', as he calls it and melancholy. After talking to Greg, Nick agreed to stay in school until dismissal and Greg picked him up. He was suppose to go to Prospect. They went to lunch together and then Nick slept in the afternoon. Friday at school proved to be the same thing. It is so hard because we are trying to figure out when he has had enough or if we should keep pushing and make him get through the day. It is only half day and we want him to enjoy the school day, not have a miserable time. He goes through a lot and we do the best we can at 'picking the battles for him'. The teacher is great and she gives him options to relax in the book corner or go to the nurse's office. We agreed to have him stick it out today and take the bus home. I think I will work with the social worker to find out ways to make him feel comfortable during steroid weeks at school. I'll have to find a book to read with some ideas.
Looking forward to the weekend and the party. Two more does of steroids and then a break for 2 weeks. I do not like watching Nick change and feel so sad at times but I know he will be back to himself in a couple of days. Take care.

Monday, October 5, 2009

Started Another Round of Chemo

Nick had clinic today. He started another round of chemo. Vincristine, Methotraxate and antibiotic through the port. He is back on steroids (5 days) and 6mp at night (14 days). Clinic was quiet this week, much better than last week. I think our busy weekend caught up with him and ended up taking a 3 hr nap today. He is still up right now and in good spirits. The doctors have increased the 6mp because his counts are still high. We were prepared for this and understand why this is necessary. The purpose of increasing the dose is to bring his counts down, which can be scary going into the flu season. There have been some kids out sick in his class and so far his body has handled everything okay. We will get ready for the steroid craze this week and hopefully he will not be in so much pain by the end. We always try to look for the signs if he is feeling pain but he is so tough that by the time we know, we are reacting to it. The boys will also start afternoon daycare (tues.,wed.,thrus) at Prospect Hill. Nick is in half day Kindergarten and tends to get bored when he is home and I am working. Our work schedules have been a little hectic and Nick feels very comfortable at Prospect. He will see his friends again and Colby will join him in the late afternoon. The teachers are wonderful and understand Nick's mood swings and help out however they can. It's a little stressful because we always worry about the germs, but again, Nick wants to play and have fun. We still have our family helping out on Mon. and Friday's, which is a huge help and we appreciate it.
This past weekend we decided to take the boys to a corn maze and apple picking. They had a blast. We were worried Nick would be tired during the corn maze and he made it through the maze for the first 20 minutes. We were almost done, finding 3 mailboxes with stamps and then he decided to take a break. Tom was in the back pack on Greg's shoulders and it was a good time to leave the maze and find the fry stand. Colby and I stayed in the maze and the last mailbox. It was good bonding time for Colby and I and he was getting worried we would not find it. He is so sensitive and was worried where Nick was that he almost gave up. We found the mailbox together and he was so proud of the accomplishment. After that we headed to the apple orchards and picked two bags of apples. I think they have eaten about 6 of them since Sunday.
We are looking forward to this weekend and the big party. We'll give more details later but let's say we were completely surprised and truly amazed of the generosity and effort that everyone has done. Take care. Karen