Last weekend, our firstborn was Confirmed into the Catholic Church and the very next day he began his two weeks of Driver's Ed (that's the book portion of the learning). Having nearly lost one son, I have learned that I hope never to express sentiment that "I want time to stop" or "Stop growing up!" I am overjoyed that our oldest son is moving responsibly through these big milestones. I'm also all too aware that I've got only about four more years with him as really a kid under our roof--in fact, with all our kids under one roof--and I hope we make the most of these treasured years!

This week was dominated by the family project of building Thomas a new playset for his birthday! John helped when he wasn't in Driver's Ed, but mostly the four kids ages eight through twelve worked tremendously to build the playset with their Daddy as foreman. Chris said building the playset was so much easier this time than the one he build ten years ago (which subsequently was worse for wear from being moved to a new home and getting battered by a tornado).

Medical Updates

Thomas's care is now so much less intense than three months ago or two months ago and yet even I am amazed when I study what it takes. I still feel like I am drowning, failing everyone, and behind on absolutely all duties, so my medical specialist therapist asked me to start writing out each night what I did that day (in all regards, not just for Thomas) in order to see reality better.

In the past 7 days, which was what I'd consider a light week, I started each day with 15 minutes of entering and analyzing Thomas's daily data, plus spending about my regular hour on Sunday morning compiling it all. I've sent 12 emails (most of them lengthy and full of analysis) to his doctors and received 13 replies, as well as had texting exchanges with his surgeon on 4 different days. I spent time on Pub Med one day investing a medication issue, plus researched an applicable FDA policy about drugs. I surveyed all of Thomas's medical supplies for an hour and entered in numerous items he no longer uses into a database at the Oley Foundation, hoping I can donate them to someone. I spent time on the phone with Medicaid, with Thomas's tube feeding supply company, and with Thomas's pediatrician, after time spent filling out a lengthy online form. I picked up at the pharmacy once this week and I took Thomas to visit 6 medical providers (plus I attended my own medical specialist psychology visit, which is essentially on Thomas's behalf, so that could count as 7). And, of course, there is the direct care of Thomas's food preparations (very frequent and more focused than for the other kids), his GI symptoms (probably taking 10-15 minutes of time half a dozen times daily), and medication administration (tube meds twice daily and new oral meds 6 times daily).

Nutrition

Bad News: Thomas has been losing weight steadily since his hospital discharge almost four months ago and still has not regained to what he weighed before cancer diagnosis. Tests from a week ago show malabsorption of nutrition.

Good news: Thomas's eating by mouth is going extremely well, with his average from this past week being 1,391 and his high day's record being 1,767! He receives another 400-500 calories by tube feeding overnight, so roughly 1,900 calories per day for a five-year-old should be sufficient. This week his weight did stabilize, although we would need several weeks of that data to trust it.

While Thomas's output tests clearly show malabsorption, his serum tests show good, normal functioning of liver, kidney, and pancreas, so those three organs are not causing the problem! We parents and the team continue to investigate and pursue leads.

Mobility

Thomas got his new customized AFO (an articulated ankle brace) with socks and shoes to accommodate. He is excited and said within the first day, "This brace is so much better. I can keep my left foot straight without having to think about it!"

If the cause of his left foot drop is muscular, then probably he won't need another brace when he grows out of this one. His muscular strength is improving so fast! But if the cause of his foot drop is nerve damage--from causes I still don't quite understand, but having to do with all his coagulopathy (uncontrolled bleeding, needing 93 blood units over one month) and surgical trauma--then maybe the story will be different.

Look at this sweet boy learning how to jump in physical therapy!

On Thursday we were at the hospital for an appointment and labs, so we stopped by the oncology clinic to pick up some Beads of Courage. Numerous of the staff came out to the lobby to visit Thomas when word got out that he was there. These were folks who had not been able to see him at his last appointment in May, which means they had not seen him since hospital discharge in March! He looks very much improved four months later!

There was much joy and tearful eyes all around at our little reunion.