Long Day at Clinic on Monday

Hello All,

I have to start out saying that we had a great Sunny weekend and had fun playing. My friend from college and her family came down from Maine for a visit. Her little boy, Dawson is the same age as Tom and the 2 of them had so much fun together. It was great to see you Frannie. Nick was feeling great all weekend and he did go to school on Monday. Greg & I both took him to clinic on Monday. I was not suppose to go and Greg was home from work, but at the last minute I changed my mind. I think was concerned about the IVIG infusion and being the first time, I just had to go and be with Nick. We ended up being at clinic for over 4 hours, definitely a long day. Nick was scheduled for: IVIG, monthly does of Pentamine, Vincristine and Methotrexate. They also gave Nick Benadryl and Tylenol to pre-treat the IVIG in case of an allergic reaction. Just thinking how much chemo and other medications that were administered to Nick all in one day is amazing. Of course Nick was great and took a nap under the 'warm' blanket. The clinic has a blanket warmer and the nurse brought him a pillow to relax. Nick even took his pills w/o being coated with the Starburst. On top of everything Nick has started on 5 days of steroids and 14 days of 6MP. The doctor lowered his 6MP dose because he was neutropenic 2 weeks ago. The 6MP is the first chemo to be adjusted according to his counts and how much he can handle. I am not sure when he will go back to the full dose.
Counts:
WBC: 4.3
RBC: 10.9
Plts: 286
APC: 2,500

I am constantly reflecting back on Nick's life and our lives over the past year and a half and everything we have been through. People always ask us, how do you do it all? How can you handle a job, taking care of kids, and then 'Nick'? The simple is we just maintain. The real answer is we have been blessed with a strong support system from our family and friends, a strong family bond and Nick to keep us going. We do not have a choice but to keep fighting hard and keep believing. Not everyday is going to be how we would like it, but that's okay for us, we have learned to be very flexible and enjoy our time together. Anyways, I thought I would share how our world ticks.
The steroids are going okay this week and we actually forgot to give it to him this morning. I believe this is the first time we forgot and we can make it up at the end of the week. We will watch for the pain to come and hope to make Nick comfortable. Take care, Karen