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.

Tuesday, May 4, 2010

Clinic and LP

Hello,
Nick finished his weekend a very high note. Colby bought his new bike (from his Birthday money) and we moved Nick up to Colby's bike with training wheels. Nick was very excited and rode the bike for over 20 minutes. This is a big hurdle for us. Nick would ride his old bike about 2 houses down and then feel tired and not ride again. He would get upset because everyone else could ride bikes but he was not strong enough. His new bike has bigger tires and easy to manage. Nick is now out and about riding in our cul-de-sac. The little things for us make a difference.
For today: Spinal (LP) w/methotrexate and Vincristine through port, 5 days steroids (we decided not to wean this time, since it did not help him) and 6MP for 14 days. Colby was very curious and really wanted to come with us today. He has been watching Nick go through treatment for so long and I believe he feels like he can protect Nick at times. We explained to Colby at dinner last night that he could not eat anything this morning if he was going to go. The rule always is: if Nick can not eat, no one eats when we are with him. Colby agreed to it and let the boys stay up late last night with snacks. They both did great at clinic today and Colby only bugged us a couple of times for food. Nick had his LP in the PICU recovery, just like last time. We could stay and watch but I had to take Colby out of the room once Nick fell asleep. Colby was surprised to see Nick fall asleep so quickly after the medicine was injected into his port. Greg said the spinal fluid was clear, no results yet but what we want to see in it. Nick, of course, woke up early and wanted to jump up and move around. We left soon after and had a nice family lunch together. I asked Nick what he was dreaming about while he was asleep, his answer: "On a tropical beach with Mommy" ooh and then "Daddy and Colby picked us up by a boat". Happy thoughts.... Nick started feeling queasy at lunch and ended up throwing up the whole way home. We had given him Zofran in the morning, but I think the combination of the everything today just caught up to his system.
Greg & I were feeling a little relieved/drained by the time we got home........ but then the call came in: Hole In The Wall Gang Camp had an extra opening for Family Weekend this weekend and invited us to go. To say that there was not a tear in my eye, would be lying. I know it is corny, but with work, school, sports and clinic visits we have definitely been a little stressed and we are ready for a break. The boys always ask us when we can go back to Hole in the wall and I applied for this weekend but it was filled up by the time I sent in my application. Obviously the smiles on their faces when we told them, was awesome.
Happy Mother's Day to Nana and Grammy and all our moms out there this weekend. Enjoy every minute you can with your kids.