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, March 19, 2010

Just a quick update today. Nothing new to report. Nick is great and really feeling much better. When he was admitted to the hospital last week, they stopped his 6MP dose, so he has been off this pill for 2 weeks now. I really thinks it make a difference on how he feels. The weather has been great and we might actually hit 70 degrees this weekend. It's time to bring out the baseball hats for Nick and he is loving that. We bought so many different baseball and beach hats last year due to his lack of hair and protecting his skin, that he is used to them now. He left this morning for school wearing Red Sox. We hope to enjoy the weekend and have lots of outside time. Take care Karen

Monday, March 15, 2010

Quiet Weekend and Clinic Today

Nick came home late Friday afternoon. He was very happy and understood he could not go skiing but chill for the weekend. He is so smart and with a smirk on his face convinced me to stop at Game Stop for a game. He picked the new Mario Wii game and I will say it was a great purchase. He played it all weekend. Michael and Debbie came over for pizza on Friday night and the boys enjoyed the time together. On Saturday, my mom and Joey came over to stay for the night. I had a little time away and the boys enjoyed playing games together. Greg and Colby came home on Sunday afternoon and they had a great time. Colby learned how to ski and playing with his friends. Nana & Papa Charlie had a sleep over with Tom on Friday night. I think Papa is still recovering from our Tornado Tom. (thank you)

Nick was a little shy to go to school today but I showed him all the wonderful get well cards the kids made for him. (Thank you kids, you do not know how much it means to us) I explained how much they missed him and he was ready to go. When he jumped off the bus today there was a smile on his face. We understand how tough it is to get back into a routine after a roller coaster week. We know he feels comfortable at clinic and the hospital and then finding his niche at school can be tough. His teacher is wonderful and helps out however she can.

Clinic was good. His counts are still pretty low:
WBC: 2.8
APC: 1,500
ANC: 800
In the hospital last week they took blood and checked for his antibody levels. This is a typical test taken every once in a while for children under going treatment. His last test was normal. Today we found out the results and it is low. He will receive an infusion of IVIG. I know our friends who are going through our journey understand this medicine. This is the first time Nick will receive it. It is to boost his immune system. His body is tired and that is the best word to sum it up. The multiple of virus's during the winter season and the pneumonia has really hit his system pretty good. The chemo brings his immune system down and he does not have enough immunities to fight all the outside germs, all the time. The doctors at the Tomorrow Fund have done a wonderful job through his protocol and giving him the right treatment. Greg will take him next week for his scheduled visit, start another cycle and receive the IVIG. Karen

Definition for IVIG:
Intravenous immunoglobulin (IVIG) therapy is helpful to some people with primary immunodeficiency (PI) because it temporarily replaces infection-fighting antibodies that some PI patients are missing

IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity