Been a hard month...

Wow, where do I begin since my last post? The steroid pulses are getting harder and harder on Connor's little body. He had a terrible time this last round with pain-it is so difficult to watch him suffer for days on end...it ends up being a weeek out of every month that he is in severe pain. It starts slowly and builds to a level that is just heartbreaking for me as a mom to see. His legs, his feet, his arms, his jaw-just non-stop pain that begins to taper off when the pulse dose is over.

I kept meaning to make a point to carry pain killer in his Thomas the Train bookbag that we take everywhere...and somehow kept leaving the house without them. Two times the pain was so bad he couldn't even make it till we got home and I eneded up making stops at drugstores to get him dosed up -He managed to not miss any speech appoitments-but had to cut one short,even his therapists could see he was not himself and was in pain...then-as quick as it comes, it is less and less, then gone and we say a big Whew! until the next cycle. The next med cycle is for March 18th, so I am hoping we can get some fun time in and enjoy life for a bit. Oh and I now have the Thomas bag stocked with meds, lol, don't want to keep making emergency stops for pain relief!

Tuesday will be a clinic day-probably get the bloodwork results back on if he is due for more chemotherapy or not...also need to discuss trying to wean off the steroids fairly soon-since it has been two years now on them. After that long, the body starts having many issues from the long term steroid use and especially problems with weakened bones...might need a special scan soon to check how his bones are handling it.

Ryan started his volunteer work last week at the Columbus Museum and Stacy is continuing with her work at the assisted living house. She plays a lot of dominoes and calls BINGO numbers, but surprisingly really seems to be enjoying it! I can't beleive there are only 10 weeks of school left! They also had their birthday and are now officially 15! I cannot believe I have teenagers that old already, the tie has flown!

Samantha went with Daddy to her school's father-daughter dance and had a great time...what a special night for little girls! The molther-son dance was this weekend, which Connor had NO interest in going to-he is still 3 after all and didn't really understand what it was about. He is doing well in school and has come so far since the beginning of the year. I know his busy schedule wears him out though, I think the summer will be good for him to get some down time.

Want to say a big Happy Birthday to my niece and nephew, Erin and Adam, who have birthdays this week! The party was yesterday and I was so much fun! Love you both so very much!

Lots of OMS and Neuroblastoma kids need prayers right now...please remember ALL these little ones fighting so hard!

Love,
Debbie