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, August 13, 2009

Uneventful day at Clinic

Greg took Nick to clinic on Tuesday and it was business as usual. Nick was in great spirits and joked with Nurse Pat. His counts are really good... for us, they are almost too good. As the nurse explained to us, you do not want them too high for his protocol. They have adjusted his 6mp up and will continue to monitor his levels. Nick's legs seem to be gaining some strength back into them. He can run a little now and we have seen him chase Colby around the house. Nick even tried Karate last night. Colby has been learning Karate since January and Nick was never interested. I think he knew he did not have the stamina for it. Last night he surprised me and asked if he could try. He had a great time, I was so proud of him. Eventhough he was the last to finish in every sprint race, he still had a smile on his face. The lesson was actually very cute because Colby (the ever protective brother) kept looking back at Nick to make sure he was okay. The instructor had to keep reminding Colby to look forward. We are going to try again tonight.

WBC: 6.3 (Norm. 5-11.0)
RBC: 11.5 (Norm. 10.6-14.6)
APC: 4,500 (Similiar to ANC)

We have a busy weekend planned as the summer nears to a close. I can not believe we only have a couple of weeks left. Take care everyone, Karen

Monday, August 10, 2009

We Are Home


We hope this post finds everyone doing well. I am not sure where to start. We have had an active week in a half. First, the boys are great and Nick is doing well. He weathered the steroids even better this time. I believe this is the first time he did not complain of pain during the 5 days. His moodiness and appetite is still there, but we will take it over the pain.

The Red Sox game was great. We had plans to go on the field before the game started and watch batting practice, but unfortunately it rained before the game and instead we received a tour of the stadium. The parents enjoyed the tour, but the kids kept asking to go to their seats. They thought it was cool to shout out and order (every) food that came by our seats. Papa and Jane were at the game and their seats were about 20 rows in front of us. Nick sat with them most of the time and Colby chilled with us. The boys lasted until the 6th inning and then we headed back to Papa's house. The boys rode the subway for the first time. Colby was so scared to get on the subway and then had a blast riding. The day turned out to be beautiful and just what we needed before heading out to Camp Sunshine. Thank you the Daddario family for the tickets.... It was a time to remember, especially since the Red Sox won.

I took Nick and Colby to clinic Monday morning. Nick was due for another round of treatment. He received Vincristine and Methortrexate through the port. He was on steroids last week and 14 days of 6mp (Chemo, pill form). His counts were great and the boys were ready to head out on vacation.

We had a wonderful experience at Camp Sunshine. First, the weather was unbelievable. Sunny everyday. Anyone who lives in New England, knows we have had a VERY rainy summer and to have 5 days of pure sunshine, was awesome. Camp Sunshine, as I mentioned before, is a FAMILY camp for children with illnesses. The week we went was for oncology kids. I was surprised to see so many of the kids in remission and the families keep coming back year after year. The camp was designed for the kids to have 'camp' time, while the adults participated in group sessions or free time. We also had 'family' time during the day as well. Camp Sunshine is located on Sebago lake and you could swim, kayaked or paddle boat. They had an indoor pool, which was a favorite for Nick and Colby. The campers were broken out into groups by age, (3-5, 6-8 and so on). Since Colby really wanted to stay with Nick (and vice versa), Colby stayed in the 3-5 group. Colby was so great with all the kids, he kept saying he was the oldest in the group and would help out whenever he could. Nick was steroids this week and could be somewhat moody. Colby always tried to make him happy and would do whatever Nick wanted to do. The Camp had 2 huge playgrounds and sandboxes. The inside activity building was amazing. The Arts and Crafts room was big, as well as the 'tot lot'. They had rooms set up for the pre-teens and teenagers. There were about 40 families there and the majority of the families were either survivors of ALL or still in treatment. The boys made some new friends and are now asking for playdates with them. Tom was one of two babies there and of course received extra attention from everyone. He, as always, just goes with the flow. He was definitely worn out by the end of each day and slept great at night for us.
As for Mom and Dad, we really had a great time. We enjoyed each other's company when the kids were in camp and then looked forward to picking them up and spending time with them. It was definitely a unique experience to have: we kayaked together and felt so relaxed knowing our kids were having a blast. If I could describe Camp Sunshine in one word, it would be: Peaceful. It is hard to put into words why this week was so special to us. We understand we are going through a 'different' situation than most families and we really try to not take anything for granted. Little issues do not effect us the way it might affect other people. We made the most of each day. We came to Camp Sunshine not knowing what to expect and left with a feeling of confidence and knowing we will fight to the end as a family. The volunteer counselors as well as all the families we met are special to us and welcomed us without judgement. I attended some of the parent discussion groups and learned a lot about myself as well as the journey of these families. Greg was able to take some time to himself and enjoyed the walk along the marina. The last night we all walked down to the pond and each child had a made a 'wish boat' during the day. We lit candles for each boat and the kids made a wish and put the boats in the water. After, we headed back to the auditorium where each group performed on stage. The kids are amazing, to know what they have been through or are going through, you would never know with the smiles on their faces and the fun they had. We even learned that some of the counselors (a family of 4 in particular) where 'campers' at one time. They are survivors and come back every year to volunteer.

I am working on downloading my pictures and the disc Camp Sunshine provided with a bunch of pictures. I will try to post the slideshow soon. Take Care, Karen