Her rashes are still a mess. As I lay with her tonight discussing the next few days, she told me she hates her skin. It itches and looks so bad. She also asked the “big guy” what he was thinking…”what, cancer isn’t enough, you got to give me all these skin issues?” She said it like a joke but then said it “actually” really bothers her. I just continued to scratch her scaly back and told her she doesn’t have cancer and she said, “But I did!” Ok, got it, Sam. Move on…
So today wasn’t too bad. I spent most of the day at Tires Plus spending almost $500 on a much needed brake fluid leak issue thingy (yikes – I thought it was just an oil change and an issue w/ my brake light – glad I went in as it was serious stuff)…the kids, thank God, had VBS this morning at St. Tim’s then left to come back to Tires Plus w/ me for a while this afternoon while they finished up the job. They both really love VBS. I am so impressed with all the hard work by the church and all the volunteers…the decorations, songs, activities and the kids absolute excitement in attending is incredible. Here’s a good Sam story. She is at VBS yesterday and tells her teacher she can not play kick ball as she has “physical issues”. Her teacher asks her to expound and Sam tells her in her way too grown up voice that she just finished her cancer treatment and also had a brain bleed. She can not run and can not be outside in the heat and sun too long as her antibiotic makes her prone to burn. Her teacher thought that was a very good reason and now Sam helps out in the arts and crafts area during outside play time. Go, Sam.
We, like ½ the country, are looking for the Wii Fit. We got the system this weekend and gave it to the kids on Father’s Day. Since then, they have been bowling, golfing, boxing and playing baseball and tennis. You should see Sam box. I was impressed that she could move that fast. If I could just find the Wii Fit for under $100, I think it’ll really help her. I’ve spoken to a few people about it and everyone seems to agree, it’ll be great physical therapy for her. It’s funny, one of her goals in PT this 6 month period is doing the hula hoop, which the Fit has, among others. Matt loves the Wii too and other than crying when he doesn’t win or throwing the control…he is doing ok w/ it. (Lots of work to do there…) So if anyone has any thoughts on how to find one of these little gems, let me know please!
Ok, so I am also looking for work 20-30 hrs a week (preferably from home)…I know, good luck w/ that one. I have no clothes to go into an office and no money to buy any…What Not to Wear should be calling me soon…free t-shirts, stretchy pants and flip flops. I’d be fine w/ tossing those into the trash can Stacy & Clinton! I can’t do the cleaning job that I originally was planning as my back is still a mess (although my clothes would be perfect for that job)! Moving on…
I am starting to look into late effects now but it is scary. We are kind of in a weird place. Done with treatment, but not done done, and nowhere really to turn or anyone for Sam to talk to…I am so incredibly thankful that Sam is done, that she is in remission, that her blood work continues to come back clean. I was reading that this phase is weird. During treatment, you live for today…if we can just get thru today, just get thru the steroids, just get thru the headaches, just get thru the nausea. And now, we really need to be looking into (and looking out for) certain warning signs, etc. It’s a different perspective. One thing remains the same…Enjoying the moment is key. Loving your children and enjoying the time together is imperative. Being out of work for 2 weeks now, I have had a chance to just “be” with my kids…and I love it and cherish every second we have together.
With Never-Ending Hope 4 A Cure,
K, J, S, & M