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.

Wednesday, November 11, 2009

My friend Debbie sent this picture of Nick & Michael over to me. We took the boys to St. Rocco's in Franklin for the Italian Fair back in the summer. The boys had a great time. I can remember Nick getting really upset because he was not tall enough to the ride the big rides. I went on one of the big rides with Michael and Nick cried the whole time. It just reminds me how tough he is. He does not want anything to get in his way.
The Hole In the Wall Group sent us an invitation for a 'Great Escape Weekend' at the Heritage Hotel in CT, couples only. We signed up for this weekend awhile back but were never really convinced we would actually be going. We can not commit to anything in the long term, we plan our schedule week to week now. Well, here it is and it is time for us to get ready to go. This will be the first time we have left all 3 of our children in over 2 years. We are so excited to go, yet apprehensive too. The coordinator asked us to bring a picture of our children and a picture of our family. I immediately pulled out the picture of the 3 boys that was taken professionally after Christmas of last year. At the time, my plan was to have Tom's picture taken only, since I missed so much of him in 6 months. Nick was not suppose to leave the house because his counts were real low but he was so excited and wanted his picture taken. We were scared the whole time and tried to keep Nick away from anyone walking by the photo area. I can look back now and say I am so happy we captured this moment for Nick. He had lost just about all of his hair, he looks pale, but he is smiling. Greg & I laugh at each other because we are the worst people when it comes to taking pictures. We are lucky to remember to bring our camera and then pull it out of the bag. We will be bringing this picture with us and a picture of Greg & I at my High School prom, yes that is right, they are having a 'Prom Dinner Dance' on Sat. night.
We informed Nick and Colby of our big weekend and Colby said it was okay. Nick said we could go for 2 nights only and we had to promise we would be home by Sunday. I am sure I will be crying leaving the house and part of the time away from the kids. We know this good for Greg & I, but also hard to be away. There are many parents who are not able to go these events because their children are in the hospital battling cancer or really sick. We are so fortunate to have Nick back in good health mode and this opportunity for us. I believe the coordinator will probably have seminars and presentations and we are hoping to meet some parents who are going our same journey. I think most of all we would like to relax. Between us both working, Nick going to clinic, the boys in sports and Tom a very active child, there is not a lot of time to rest.
Nick will start another round of chemo & steroids on Monday. He was taken off of the 6mp pill last week when we went into the Hospital, so we have had a little break from everything. Unfortunately Nick is so conditioned about his medicine that he asked us for his pill last night before he went to bed. We explained that he gets a break for a week and he said to us: "did you ask the doctor? Is that okay?". He is a fighter and he believes his medicine will help cure him. We continue to pray it will.
Thank you to everyone who is helping out this weekend, a big family crew is coming together, we appreciate it. Take Care, Karen

Monday, November 9, 2009

Back To Clinic

Hi All,
Nick and I headed to clinic today. He first went to school and was very excited to get back on the bus. Clinic went very well. The nurse (Angie) was surprised to see his red spot from where the ER first tried to access his port. It was pretty high and not where the spot usually is. We still battle with the concept that the ER does not exactly know how to access the port, but since Nick is getting better at it we try our best. In other words, mom did not ask them to call the 5th floor for a nurse to come and do it the right way.
At clinic, we thought his counts would not 'make it' for chemo today, but to our surprise (not Nick's) he made it. Today was Methotraxate only. We will start another round next week. His counts re-bounded great.
RBC: 10.4
Plts: 478 (on the high side)
APC: 2,600 (we thought this number would a lot lower)

He still has a cough, but it is loose and so far they are not worried about it. He ended up taking a 3 hour nap today, so tonight will probably be a late night. It is definitely hard to get him back into a good sleeping pattern after leaving the hospital. You can never get a good night sleep there. The nurses check on you all the time, which is good, but does wake us up. We should have a good week this week, and maybe mom and dad can go away. We have had this weekend planned for awhile and will give more details as we approach the weekend.

PS. I would like to say thank you to Debbie and Mike for having Colby & Nick over on Sunday. Nick was going a little stir crazy being cooped up in the house all day and I decided to give Deb a call, planning on having Michael over. She ended up taking both boys, giving Greg & I some time to catch up on house work. This weekend was also originally planned for Tom and I to go to Maine to visit my dear friend Frannie in Portland. She has a little boy, Dawson, who is the same age as Tom and we were planning a shopping adventure and so good winter ale. I ended up canceling with Nick being the hospital. While I was really looking forward to spending some quality time with Tom, I realized we could do that at home to. Greg & I took advantage of giving Tom some 1 on 1 time while the boys were gone. He has such a great personality and loves to laugh a lot, which we all need at times. I'll catch up with you soon Frannie. Take Care. Karen

Sunday, November 8, 2009

Test was Negative

Just a quick update to let everyone know that Nick's H1N1 test was negative. They did find he had 2 viruses, thus leading to the fever. The new swab test can test for everything. We are trying to keep all the boys busy while at home. Nick understands he can not go anywhere and is okay with it.

Also, Tom and Colby finally received their first dose of the H1N1 shot. Our doctor's office called last week and said they would hold a dose for each child. I took them both yesterday. Colby was so nervous and kept saying he would not get the shot. He cried right up until they gave it to him and then he realized it did not even hurt. After everything Nick has gone through, I think he was scared and worried it would really hurt. I have to say, it was easy for me to deal with. You see so much more that goes on with Nick, that this is just a walk in the park to take care of. Tomorrow we will head to clinic after school. Take care. Karen