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.

Thursday, January 21, 2010

Day 1 of Steroids

Yesterday was Day 1 of steroids and it has started off very challenging. Nick was upset in the morning because his back pack had to much stuff in it and it was heavy. Greg told him he would help him get it on the bus. We had to pack his lunch, snow pants and shoes (for daycare). I guess Nick ended up getting on the bus pretty upset. I received a call from the nurse at 9:30am because Nick was complaining of a stomach ache. The nurse was able to find out exactly what was happening, Nick did not want to go to gym class. His legs feel tired after gym. I have mentioned to him that he needs to let the teacher know if his legs hurt, so he can rest. The nurse re-assured both of us that she would talk to the gym teacher and check up on Nick next week. It is part of our 504 plan, so we should be okay next time. Nick's teacher also emailed me in the afternoon letting me know that Nick had a rough day. He was on/off crying because of the whole back pack episode. He did better at night and only had 2 melt downs. This morning was much better and he was happy that we tied his snow pants to the outside of the back pack. I had to pack him up 2 bags of Doritos's, I think this will be the food of the week. I only bought one bag on Tuesday and it is already gone.
Tom is sick with the throw up bug. He has been home for two days. Not sure how our weekend will turn out and hoping we all do not get sick.
On a positive note, Colby was asked to move up to the 'big kids' Karate class. He is very excited and will start on Friday night. It will be good to have the kids separated for class, for now. Karen

Tuesday, January 19, 2010

Clinic Today and Back on Steroids

Hello All,
We are happy to come off of a great weekend and get ready for the next week. On Sunday night Cousin Rachel stayed with us. She goes to college in CA and it was great to see her for the whole night. (Although, I think we took her away from socializing for a little bit. :) ) Nick and I headed to clinic today. Papa Boston brought the kids a paper air plane kit yesterday and of course I had to bring it with me to clinic. We made 3 planes and tried to make the 4th but it was time to go. The nurses at The Tomorrow Fund are wonderful. Nick is now very used to getting his port accessed and we are proud how far he has come. Many of the nurses have said that kids his age do not adjust as well as Nick has during the access. I am amazed because all these kids go through a lot and I can't blame them for not liking it. Then, on top of it, they are hit up with chemo, blood, platelets and meds. Nick started his cycle today, Vincristine, Methotraxate, steroids for 5 day and 6mp for 14 days. They have increased the Methotraxate dose this week. We had reduced it a couple of months ago when he was sick and had some viruses. He is not up to the 100% dose yet, they decided to take it slow and make sure his body can handle the adjustment. His counts are great:

WBC: 6.3
RBC: 10.3
Plts: 352
APC: 5,100

If you do not remember the normal range, all the numbers above are within normal. This is one of the reasons it was time to increase the Methotraxate. You look to make sure the chemo is doing the job and the counts are not to high. The chemo kills the good and bad cells and you hope it can attack any remaining leukemia cells that might pop up.
We had a great surprise today. A family we met almost a year ago, when Nick was in the hospital for a fever and really down at the time, stopped in clinic to say hello to us. A little boy named Cody was diagnosed with a brain tumor in May 08. He is now cancer free. Cody grabbed Nick's hand and walked him around clinic for awhile. Nick was very excited to be 'the big kid' and hang out with his friend. Cody is almost 2 and had a few set backs during his treatment. The resilient in these kids are amazing and it was great to give the mother a hug and wish them well.
That is all for tonight and I am sure we will have updates during the week. Nick already mentioned that he can not sleep alone. As parents, we all know how the kids would like to sleep with us. Between Tom and Nick, it is like bed hopping and trying to get some sleep. It's okay, because we have our family together and that is most important to Greg & I. Take care and don't forget to give your kids extra hugs. Karen

Sunday, January 17, 2010

A picture of Thomas

Hello,
I am blogging tonight about a picture that was posted in the last photo album I uploaded. The people who did see the album will understand the picture of Thomas. I apologize for this picture and really believed it was deleted before the album was uploaded to this blogsite. You have to go through the Picasso web album site to create an album, save it, reboot your computer, log into our blogsite and then upload it. I am still not sure how this picture showed up because I went back into my Picasso album and did not see it. It is a public site, so a little scary to know about this.

Of course I woud like to end this blog on a positive note. We all had a great weekend. Nick had a sleepover at Michael's house Friday night, thank you Debbie & Mike (Michael's dad). Mike also took Nick for a hair cut. He looks great. Hair is very thin and pretty much gone in the back. He wanted a mo-hock, but he almost has one. We all went to Auntie Lisa's and Uncle Hectors house for an ice-skating party on Saturday. It was warm out during the day, but Greg & Colby skated at night. We enjoyed our time with family and friends. No big news to report. We head to clinic on Tuesday afternoon and then we start the cycle. The boys are off tomorrow and Papa Boston is coming for a full day of fun. Take care, Karen