Wild ride around here!

Bathtime Fun!

The Big Top Cupcake!

Random colorings by Connor...

Samantha's American Girl Doll in her jammies "aka, hospital jammies according to Connor" He is right though-they DO look like hospital gowns at Scottish Rite, lol!


Seems at the moment we are living from steroid cycle to steroid cycle...one BAD week, then a break, then it all starts all over again. Sorry I am updating so seldom-the only time I can find time to do it is when his pain for the month is over AND the computer is free-no small thing with the twins needing the computer for homework everyday! And even now Samantha has started having some computer homework too, it blows my mind.

This last round was another rough one, for Connor and Mommy. So much pain I ended up bringing in some Motrin to his school to help hold him over through the day until he can get home and take something stronger. He is such a big boy though-even when he is hurting, he is still so good at school! Praise God!

He is excited about his birthday coming up soon (April 26th) That evening we will be at one of the relay rallies for Relay for Life and he will get introduced to all the teams working so hard to make this a successful RFL 2010.

His party will be April 24th, at home of course away from all the germies everywhere else,-he is VERY excited about the theme- Handy Manny! I have to come up with a cake to meet whatever expectations he has in his mind, lol, I hope I can make him proud.

Cannot wait for Spring Break-if his health (and mine) make us able to travel okay, we will be headed to Florida! No definite plans except arrangements for the dog. We like to play it by ear just in case Connor is too sick to go.

We have lost a lot of sweet children this past month to neuroblastoma and also a darling little boy named Reid who had OMS, taken far too soon from his family...please keep these families in your prayers, rough days ahead for them, although heaven is certain to have these angels laughing and playing together!

Happy Easter to all our dear friends,
Debbie

Ahh, the relief!

Connor's grandfather gave him a tube of some "muscle & joint pain relief cream"-you know, the stinky stuff that smells like Ben-Gay, lol. Connor is obsessed with it now! He is carrying it everywhere he goes and it seems to be helping him out some. I just thought it was funny for some reason-I guess since it is being used by a 3 yr. old might have something to do with it?

CLinic went smoothly today. I didn't know wether to be happy or sad that Connor did SO awesome for getting his port accessed...i was happy for him that he laid down and didn't make a fuss, but then another part of me was thinking this is so sad-he has finally truly accepted that this is what he has to do. What a brave little fighter he is, so tough and strong through all the pokes and sticks and the medical tape he hates so much. He even despises putting the numbing cream on before had, it is all cold and icky feeling- but he takes that too! Connor is amazing!

Good report from the doctor, no immediate plans to get off the steroids-fine by me, I am scared beyond wrords of him having no protection for his growing brain. I do believe it will be within the next 6 months that we wean him off...or possibly decrease based on Connor's pain level with them.

Got our check in call with the Make-A-Wish organization! Everything seems on track for Connor to get his wish in the named time frame of 6-12 months. Still not quite sure what he will pick-as he gets older his intersts are changing often...right now he is totally into Handy Manny and is obsessed with "fixing" things all around the house.

Monday we have a little photo shoot set up for Relay For Life, along with little Chloe Shiver, since they are the two chosen honorary children for the event. I'm a little worried about the weather since it is going to be outside, and also worried becasue Connor is having a problem with wind right now touching his head. ?? Strange, I know, lol. So he might end up in a cute hat for the pic, we will see I guess!

Little Layla Grace passed away earlier today...my heart sank when I heard the news, but thank goodness there is no more pain for this sweet two year old baby girl. She suffered from neuroblastoma and her family could use as many prayers as you can send!
www.twitter.com/laylagrace

Thanks for checking on us, with love-
Deb

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