Sunday, March 1, 2009

Weekend update

Jones family
Aunt Ami flew in from Austin late Thursday and has been helping us ever since. Uncle Rich and Tara joined her Friday afternoon, driving in after work and school. (College student Sasha is in Savannah.) The full house has been great fun.

Ami prepared a gourmet meal last night -- roasted beef tenderloin with double mushroom ragout, horseradish mashed potatoes and lemon-thyme spinach. She's also been sprucing up our container garden off the kitchen, taking care of Katie and running errands.

Cooper has been Rich's shadow, helping him cut back plants in the front beds and discussing strategy for computer war games.

Rich and Tara return to Austin this afternoon, and Ami will be here until late Monday.

Tara, Rich, Steve, Cooper, Tyra and Katie

Destination Imagination
Ami and Tara joined Katie, me, Jim and Betty yesterday to watch Cooper and his Destination Imagination team perform at the regional tournament.

The seven second-graders -- Caleb, Dylan, Cooper, Asher, Matthew, Mia and Brighton -- have been working on their challenge since September. They created a funny, detail-rich skit about a computer bug who confuses Web sites.

We all loved watching them perform and were thrilled when their hard work and team spirit was recognized with the Renaissance Award for outstanding design, engineering, execution and performance!

The team will perform again Monday in front of the entire school during the morning assembly. Our goal is for Steve to be well enough and strong enough to attend.

Cooper, Ami, Tara & Katie at DI

Steve started to feel Carboplatin-induced nausea on Friday, after the IV anti-nausea meds wore off (they were given before chemotherapy on Wednesday). He's been taking oral Zofran as needed to help him feel better.

His new home-health occupational therapist visited Friday morning, followed five minutes later by the new physical therapist. Steve worked hard for two hours.

The OT focuses mostly on upper body motion. He assists Steve with achieving and maintaining independence on daily routines -- shaving, showering, dressing, eating. All of these activities have become increasingly difficult with the stubbornly slow left side of his body.

The PT focuses on whole body movements, such as using the walker and getting in and out of the bed and chairs. The main goal is safety. We have to prevent a fall.

His sleep patterns are unpredictable. Some nights he can't fall asleep until 2 a.m. and sleeps late. Or maybe he falls asleep by midnight but wakes at 4 and is up for two hours. He definitely feels better when he's had more sleep, so he fits in naps when he can.

Steve continues to work from home. His mind is still sharp, and he's proud that he's able to continue the work he loves.

Understandably, his spirits have been affected by the past few weeks. There has been so much deterioration in such a short amount of time, and he's had to make big physical and emotional adjustments.

Still, he knows he is loved and never fails to express love for everyone around him. And we continue to hope and pray for relief from the growing tumor. We visualize those Damm Spot cells being beaten back by Carboplatin and Avastin. Out Damm Spot!


Ellen said...

A piece of advice.. when they tell you to take a stool softener daily while on Zofran, they're not kidding! That's all I will say on that subject.

Chitnis and Chahal said...

Praying that the treatments work to cut back the tumor cells.
Steve, keep your spirits going. You are an inspiration for a lot of people, you are a hero. The setbacks will pass hopefully and you are still working, how good is that.
As always hoping and praying for recovery and betterment for you.

DogBlogger said...

Prayers still ascending from here. Thanks for these updates on the whole family. Go, Coop, and Go, Steve!