Monday, November 24, 2014

Hospital-free Week

This is our first week without any Dr.'s visits and checkups and it feels nice. 

This weekend, courteousy of Make-A-Wish, we saw Disney on ice, and Jack thought it was really fun. Disney movies are not his cup of tea, but watching the skaters and lights and fun music was quite enjoyable. 

He took his last dose of Acutane today. Acutane is supposed to starve the neuroblastoma cells of vitamin A, and it also dries the heck out of his skin and gives him mood swings. So we're glad that he'll stop "molting", and hopefully return to his normal bossy self. 

Jack is getting stronger and more flexible too. He can bend his knees now, which should help with running and jumping. He can't run yet, but is starting to jump. 

We will be visiting family for Thanksgiving, and although I don't expect him to eat much, he should get plenty of opportunities to walk and move and get exercise. He likes stuffing, so at least there's that. 



We're thankful for many things this week:

- Make-A-Wish giving us a fun Sunday afternoon,
- Jack walking around on his own, and getting stronger,
- The upcoming long weekend to watch movies, play with cousins, and get stuffed with stuffing. 

Sunday, November 16, 2014

Showtime Sunday

We had a super relaxing Sunday today. 
Jack is a big fan of Aliens and Predator movies (I wonder where he gets that from?) so we got a couple of movies from that series and watched them today. Sometimes we walk around the house making the clicking Predator sounds. We also have games on our iPad we play together and learn about those two. (Aliens and Predators.)

Jack is eating well and trying out new foods. Tonight he wolfed down a runza casserole with mushrooms and cabbage, which is quite a leap from his go-to meal of fried chicken.  

Physical Therapy is going really well. Jack is waking and starting to run on the treadmill. He still can't run on his own, but as he gains more muscles and flexibility, I think he should be OK. 

Dr's checkup on Tuesday, I think mainly to check his weight, and maybe discuss the next steps. 

Here are a few pics from yesterday, he recently got his second haircut since his hair came back. 


Today, and for the past few weeks, I'm grateful for:
- Jack eating and getting stronger. It's very nice to be able to have him walk around the house on his own. 
- feeling cozy and watching movies while it's snowing outside. 



Thursday, November 6, 2014

Quick Update

Sorry for the late update, but Jack is doing super! Last Friday Jack had a quick weight check, he clocked in at 38.2lbs. Yep, he gained 1.2 pounds in five days. Rock star here!

Trick or Treating weekend was good, it was a little chilly for him even being all bundled up, but he got a fair share of candy. His cousins shared some of their candy with him too. It was a nice weekend getaway.

Jack is on an appetite stimulant (Megace) and it's working like a charm. It's was great hearing him say last week that he was hungry. We haven't heard those words for so long. He feels better, mentally and physically and is walking around good. I would say today, Thursday, he weighs a good 40 lbs.


Jack's still busy with physical therapy twice a week and of course his school work. When he wasn't feeling so hot with constant stomach issues, it was hard for him to do homework. But now with him feeling better, everything is easier. We have our fingers crossed that he'll be able to slowly transition back into school after Christmas vacation.

We have another doctor's appointment on Monday, weight check again and labs. Jack will start his last two week dose of Accutane on Monday. And then no more meds! Hooray!

Today I'm thankful for:
- no brainer, but Jack finally gaining weight!
- great weather for yard work. It's almost done.
- everyone happy and health in our house. Flu shots scheduled next week for us.