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, October 29, 2009

Fun Party Tonight

Hi Everyone,
We are doing well this week. Nick has weathered his steroids pretty good. The first day of it (Tuesday) I picked him up from school and he decided he would like a playdate with Michael. Michael and family are in FL this week and I explained we would have to wait. I think Nick cried, yelled at me and kicked things for about an 1.5 hours. He finally exhausted himself and took a 3 hour nap. I feel like I am getting a little better when I know he is going 'lose it' and get really upset. Once he gets lost in the world of 'why can't I do this', it is hard to bring him back. I think it works best when I count to ten first and then have Nick count with me. He has been good since then.
Colby, Nick and I went to a Halloween party tonight. We had so much fun. The kids had a scavenger hunt outside, dodge ball in the garage, ice cream sundaes, donuts on a string and best of all a scary story where you would put your hand in a box and feel the 'body part' (aka food) of the person in the story. Darcy and family had the house decorated and very spooky. Thank you.
The boys are very into Halloween this year. Last year, Nick was home with us but not feeling too well, with all the new chemo & steroids in him. Nick and I sat on our front steps (Kim across from us and we were yelling over to her) handing out candy. I had him all bundled up from head to toe and it was not a cold evening. He was happy just sitting on the steps, knowing he did not feel strong enough to walk around with his brother and dad. Nick remembers Halloween from last year and this year he said he really wants to try and walk around the whole neighborhood. We have the red wagon and maybe we can take Tom in tow with us.

Our family is well now and healthy. Greg and I are very concerned about the H1N1/flu going around. I leave for a business trip to Racine, WI on Monday. I look forward to the trip and seeing some of my co-workers I have not seen in a while and look forward to learning new business tools. I am also scared of leaving Nick and family. I know this blog is not about 'me', but the thought of leaving my family for 3 days is hard. I have not traveled in over a year and a half. I think I would feel much better if we had received the H1N1 shot. We are ALL still waiting for this. We can only receive the shot and NOT the nasal. It amazes me how I have learned some Pediatricians have the shot available, but our clinic does not. I really feel like it is just a matter of time before one of us gets sick. We are taking as much preventative measures as we can w/o trying to hold our kids back. Marie Cowles gave me some good advice tonight. If anyone knows of a pediatrician that have the H1N1 shots for a 6yr old and 16month old, please let me know. I know there is a lot of push back if you are not their patient, but at least I can ask. Nick is not in 'his window' to receive the shot. He can only receive the shot on days 15-21 of the 3 wk protocol. (He repeats his cycle from day 1-21). His counts will start to go down this week and next and then back up on week 3. If the shot is not available then, we will have to wait another 3 weeks for it. I am trying to focus on the rest of the family receiving the shot asap. Thanks for everyone's thoughts and prayers. Take care, Karen

Tuesday, October 27, 2009


Hi All,
Today will be a quick update from us. No really big news to report. Greg took Nick to clinic yesterday and his counts were very good.

WBC: 5.9
RBC: 10.2
Plts: 245

They have decided to increase his methortraxte to 100% dosage this week. He recieved Vincristine and is back on steroids and 6mp. We are still waiting for the H1N1 shot for Nick and nasal spray for the boys. It is frustrating waiting, but we know everyone else is waiting to. Until then, we continue to remind the boys to Purell all the time.
We are looking forward to the two Halloween parties for Colby & Nick and of course Saturday night. Nick is going to be the red Power Ranger and Colby is going to be a jedi. (Although his costume looks like a warrior, but that's okay). Everyone take care and have a great week. Karen