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, May 14, 2010

Coming Home

The plan is to have Nick discharged around 4:30pm this afternoon. He will still be on antibiotics for a week. The doctor did see a 'tiny' spot on his chest xray from Wed., so as a precaution we will start zithromax. His counts are a little better today:

WBC: 1.6
RBC: 7.9 (dropped but they do not believe he needs a transfusion)
ANC: around 200 - still waiting on the hand count

He is still neutropenic (under 500 for ANC) but the doctor believes it is just a virus and needs to run its course. Nick looks great and was running around the play room last night. Greg said he feels great today and of course wants to come home. If he does come home tonight we will be staying close to the house for the weekend and letting Nick rest. I will update later once I hear back from Greg on the final decision. Karen

Quick picture of Megan and Nick yesterday playing on the bed. Nick was proud to show Megan his port and how it works. Megan was a little scared of everything going on but then she warmed right up.

Thursday, May 13, 2010

Update: Still here

We are definitely spending one more night. Nick's counts did not change to much but he has been fever free since this morning. He looks really good and thanks to a visit from cousin Megan and the Hole in the Group, his spirits are up to. Megan and Nick were able to go to the play room (they each wore masks of course) and play together. I think Megan really enjoyed Nick moving the bed up and down. Jeff, from Hole in the Wall came in and drew pictures on the windows and door of Nick's room. He is great with kids and had Nick laughing the whole time.
Counts today:
WBC: .8
RBC: 8.2 (down .4 from yesterday)
ANC: 144 (up from yesterday, 104)
The doctor said if he can stay fever free and still looks good then we might be able to go home tomorrow afternoon.

Wednesday, May 12, 2010

ER visit turned into a stay

I guess the excitement of the weekend was a lot for Nick. He started coughing yesterday and through the night last night. I kept taking his temp. and he was fine. He went to school today and was feeling tired after he got off the bus. Again, I took his temp. and he was fine. We decided to go to lunch at Teppanyki's and he did not eat much. He then fell asleep for a couple of hours and woke up around 3:30. He felt really warm and sure enough he spiked a fever. I called clinic to let them know we were going to the ER because it was to late to go through clinic. Of course Paula our nurse at clinic said she would come to the ER and access Nick's port for us if we could make it there before 4:30pm. Nick was not happy about leaving home and going to the hospital. At the ER his temp. was 104 and his heart rate was up 160. His labs came back and his ANC is 104... definitely neutropenic. I am staying with him tonight. We did not pack clothes, I guess thinking optimistically, Greg drove down and dropped some off for us. (Thank Nana for helping out at the last minute) We will see how his counts are tomorrow. His red blood cells dropped from 10.6 to 8.6 in two days, so not sure if he will need a transfusion tomorrow. I am thinking we will be here until Friday which really stinks because Nick has a performance at school in the morning. He has been practicing for his line and I know he will be very upset if he misses school. It has not been a big deal to Nick when he misses school but I know this time will be hard on the 6 year old. Take care, Karen

Monday, May 10, 2010

Clinc today and a quick look back at the weekend

Hi all,
Nick did great at clinic today. His counts were good.
WBC: 4.3
HGB: 10.0
PLTS: 275
APC: 2200
He did not get another IVIG infusion as we thought...It is next week. I guess since he seems to be feeling better since we had our first IVIG we were ready for more. Another interesting note about the week was that Nick has not complained about any pain! Yehaaa! You are always holding your breath that last day of steroids wondering, when is it going to come. Maybe there is something to be said about your mental state that can block pain. If you read Karen's last blog you know where I am going with this. Yes, the Hole in the Wall Gang Camp was awesome. Awesome for me, awesome for Karen. She and I climbed the rock tower and then leaped off down the 350 ft. zip line. No big deal, for Karen that is. She is fearless. Me not a big heights guy, but I am quite proud of myself. Oh wait this is about the boys! Tom really was absolutely the most perfect almost 2 yr. old you have ever seen. I don't think he cried all weekend. That must have something to do with our "Family Pals" Beth and Sadie. Beth is the same incredible woman who we had the pleasure of leaving Tom with last year. Sadie is new to The Hole in the Wall Gang Camp but not new to the family. She has spent time at the Painted Turtle in California. Nick had a bit of hard time as is expected being on Steroids but he had is "flashes of brialiance moments" like at Mother's Day breakfast ( a big deal at Camp) he was one of only 2 kids who got up in front of everyone put the mic in his hand and wowed the crowd with his off the cuff ellegant praise of his mother. He was beautiful. I now come to Colby. What can I say about how incredible this place is for Colby. Karen said it perfectly, "Colby is made for Camp". He went from crying about Mom having to do the "Bushy tail" dance (who knows why) to being a star at stage night when he did a Karate display that ended with him breaking a board in half and I tell you it was cool! He thrives at this place, I guess everybody does. Sorry for the rambling, I hope that Karen follows this up and makes some more sense. It will take a while to come down but we will bask in it as long as we can.
Take Care,