Updates (May 20-26, 2012)

Sunday (5/20) – The whole family made it down to church today! Ian’s doing ok, the asthma girls are doing ok, and the baby’s mystery fever has passed, so everyone was healthy at the same time

After church, we ventured over to our dear friends, the Veeks, for a graduation open house. At first, there were mixed emotions- Ian should’ve graduated with their daughter, but after a few minutes, hanging out with old family friends was just so natural that we didn’t worry about our own disappointments. That afternoon was about Kayla, and celebrating her accomplishment, and just enjoying sweet fellowship. And, boy, was it sweet!

After most of the guests had left, we got our white cardboard and binoculars ready to catch the annular eclipse! I’ve never actually seen that before, except for pictures in a news article, so that was loads of fun! I’m so glad Ian was able to enjoy himself that afternoon.

Monday (5/21) – The usual 3 therapy appointments today. Ian was feeling much better than last week, when he had lost so much strength after the last chemo round.

Tuesday (5/22) - A much appreciated day off!

Wednesday (5/23) – We had a family meeting with Ian’s therapists at Sister Kenney today (minus my husband, who was hard at work at his contract job). They gave us progress reports in all three disciplines – Speech Therapy, Occupational Therapy, and Physical Therapy. Ian has made great strides in rehab. It’s really been baby step after baby step, but over nearly 10 months those baby steps are finally adding up to great strides.

It looks as though both Speech and Occupational Therapy will be winding up very soon, and Physical Therapy will be cutting back to once a week. Our emotions are mixed. We’re thrilled with his progress, and the lighter schedule will be easier on the whole family, but it’s hard not to worry that we’re giving up on the hard work too early. He’s come a long way, yes, but he’s still nowhere near where he once was, and I just wannt so badly for him to be able to make every ounce of recovery that his body is able to make.

There will be follow-up with his doctors and therapists at Children’s, and there will always be the option of starting back up if Ian appears to lose progress…

On the way home, Ian turned to me and said “I’m not ready to be done with therapy, but I am ready for the next step, whatever that is…”

We’re looking into pool therapy through Courage Center at the YMCA, and possible a martial arts class, and a manageable home exercise program.

Our appointment with the chiropractic neurologist went so much better than last week. The difference in Ian’s strength and coordination right after a round of chemo is a stark one. But he’s bounced back pretty well with each of the last couple rounds and has been able to make a little more progress each time, so, while the setback is discouraging while he’s in the middle of it, it is bearable, we just need to keep ecouraging and pushing him through it.

Thursday (5/24) – A quick lab appointment in town for bloodwork to check counts. (His ANC was 1900 last Thursday) Today is the 2-week mark, so his counts will probably be much lower and we’ll enter the be-very-careful live-life-in-a-bubble-for-a-while period (his ANC has dropped to double and single digits in prior cycles). They haven’t called with results yet, but he’s been feeling rather lethargic for several days, so I’m pretty curious to know where the numbers are at…

Friday (5/25) - The usual 3 therapies today. We should hear more about the tapering down schedule.

eta- Ian’s main speech therapist doesn’t think it’s time to wrap up therapy, so it looks like speech therapy will continue with once a week appointments along with physical therapy. We haven’t heard the final word on occupational  therapy.

Also, I got the call about his bloodwork results. His ANC has actually gone up! It’s currently 2,200. The rise surprised me a bit, as it did last cycle (but then it also surprised me by dipping back down again later), and it was mostly due to an improvement in his white blood cells (which have tanked in the Cytoxan cycles, but don’t take as big of a hit in the Cisplatin/CCNU cycles). His platelets were significantly lower, though not to a dangerous point, so he is at an increased risk of bleeding if he were to get any type of injury. This is common with the drug CCNU… 

Saturday (5/26) – Ian has enjoyed a “lazy” day today…