It felt odd not posting yesterday. What didn't feel odd was the GREAT DAY we had Sunday! Pablo slept soundly on Saturday night. No pain, no screaming in the night. Nothing but sawing logs. When he woke on Sunday, he was happy as hell. It was like the prior nights of tummy terror had been wiped clean. What a RELIEF!
A good night's sleep lead to a day of play, laughter and all kinds of other indoor recreation. It's remarkable how one's true thoughts and personality comes out when hours of grimacing and screaming go away. I noticed it constantly on Sunday—I kept thinking, without all that pain taking up his spiritual bandwidth, Pablo's personality is on FIRE today. His sentences seemed huge. His observations and jokes and stories were that of a true raconteur. He offered up a steady flow of ideas for playing games and reading stories—none of the 'get away from me' stuff.
The word 'relief' comes up again and again for me as I write this. Relief that his pain didn't go on forever. Relief that, without medicine or going to CHLA ER for hours and hours of questions and waiting, the pain worked itself out. Relief that our constant email and phone contact with our AMAZING doctors, Mascarenhas and Stein, we had the courage to work Pablo through his pain. Relief that Pablo's body is still strong and sturdy. For me, I appreciate the four or five days of pain, because it was a physical embodiment of all we've been through, and all we're going through.
Utilizing a simple kit of tools like simplifying Pablo's diet to small bites of bland foods and b r e a t h i n g through the pain, we were able to eradicate the whole mess. With the tumors gone, the enemy we are now fighting is invisible: the possible microscopic cancer cell is our target. We're not even sure these enemies are real. Yes, it's great that the tumors are out. But when you're fighting a foe without a face, there's no scoreboard. In an all-out situation like this, a scoreboard is helpful. It is the carrot on the stick. Our lost week of tummy-wrenching gave us a feeling of accomplishment. It pushed us further down the road. There's a lot of power in that.
I could write for days about this. It's fascinating to me.
We are due at CHLA in an hour, so I better run. Today is radiation day six of 11. The treatment to the left side is complete. From here out, it's all about the right side. We are making progress. Pablo and I studied the numbers yesterday. He now knows how to subtract from 11. Even though he's missing over half of his first year of kindergarten, we're teaching him the basics using the tools we have.