Update:

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.

Thursday, July 16, 2009

Steroids Reduced

Nick is on steroids this week. As previously mentioned, we started another round of chemo and steroids. His dose is only a third of what he usually received. We have seen little improvement this time around. He is very emotional and little things he can set him off. He had about 3 different melt downs yesterday and it is hard to comfort him and try to change his 'mood'. The good news so far is that he has NOT complained about pain yet and he said his legs were feeling better yesterday. We will know more as the weekend approaches. A lot of people have asked me about Nick's treatment and the chemo he is on. I found a website (imagine that, I have been reading about MANY other kids w/ALL), that had an attachment describing the different chemo drugs and the effects of each. If you scroll down this blog and on the right hand side you will see the link... chemo information. Nick has received the following chemo throughout his treatment:
Doxorubicin, Vincristine, 6-MP, Methotrexate, L-Asparaginase, Steroids & Cytarabine-in spine. I am not sure if I am missing any drugs, since the first month of Nick's treatment was a blur and I do not have the protocol during that time. These drugs are powerful and to think of all the stuff that has entered Nick's little body.... he is amazing.

I really needed to post today because we wanted to share with everyone that Colby lost his first tooth. This is a big deal for a 6 year old. The tooth fairy came last night and he received $5 for the first tooth. (very generous tooth fairy) Colby continues to go with the flow and will do whatever Nick wants him to do. The boys now have sleepovers almost every night. Nick is having bad dreams lately (or maybe it is just an excuse) and can not sleep by himself. It's okay by Mom and Dad. We enjoy seeing ALL the boys happy.

Monday, July 13, 2009

We are Officially in Continuation Phase

Greg, Colby & Nick all went to clinic today. Nicholas is now in continuation phase. This is the last and longest phase of his treatment, at least 70 weeks. This phase is similar to the previous phase, in which we work off of 3 wk intervals. Day 1 (of 3 wks) Nick receives Vincristine and Methotrexate via port, he is on 5 days of steroids and 14 days of 6MP-chemo pill. He is not on any medicine days 15-21. Then we repeat the cycle above. The only big change (and we hope to see a change) is the steroids. The steroids are reduced down by 2/3. We are hoping this change will alleviate some of the pain, moodiness and cravings he has been experiencing throughout the last phase. He has been in physical therapy for the past few weeks and the times in the pool have helped him to. We are SLOWLY seeing improvement in his leg movement, but that is only when his counts are up. Nick definitely has a different outlook at clinic. He does not cry to have his port accessed and he holds still. (very important when you get a needle stuck in you). Nick knowing that he does not have to get a shot in his leg, has made things easier for all of us. Who could blame him for acting so unhappy all those weeks. He is fighter and that's why he pushes our buttons. Nick started camp last week. He goes 3 days a week, 1/2 day only. Colby goes to the same place, but 3 full days. They both loved it and had so much fun. It was actually weird for me to have Nick gone 3 days in a row. We have adjusted to him being home everyday (except the occasional visit to daycare every once in a while) since October. It is also a good feeling to know he is trying to get back into his 5 year old body and enjoy time with his friends. I know he needs, that because Mommy can be pretty boring while she works during the day. Take care everyone, Karen