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
Nick is an amazing 6 year old fighting T-cell Acute Lymphoblastic Leukemia (ALL). He was diagnosed at 4 years old on Oct. 15, 2008 and here is the story of his courageous battle. This day changed our lives forever. Nick seemed very healthy at the time and the only signs we noticed were swollen lymph nodes on his neck. At first, we thought it could be a virus, but after 2 rounds of blood tests, the doctors confirmed our worst fear, cancer. This site is to show how strong our little boy is.
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.
1 comment:
Hi Karen,
I met you a few weeks ago at Nick's presentation to his Kindergarten class (Lindsay's mom). I was at her 6 yr check up & was told if I wanted to get the H1N1 shot I needed to make an appointment for that. The practice name is Franklin Pediatric & Adolescent care on Rt 140 by the Piccadilly Pub. Their phone # is 541-8000.
Good luck & hopefully they can help-Christine
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