Friday, September 5, 2008

Meet The Rad Dudes

Today was a bridge day—both in terms of Pablo's recovery from surgery and in completing the treatment plan for the rest of the year. P woke from his 12 hour sleep smilin' and profilin'. He's not 100% yet, but he's 100% better than Thursday. We expect the same gain on Saturday. That said, we are not expecting to go home any time soon. The next round of chemo may start on Monday (if P is recovered enough), and we have to be in-patient for that anyway.

The chemo game gets a bit more intense from here out. It won't be as easy as it has been up to now. In general, the doses are higher, and he will be on five different drugs, up from three. Every three or four weeks, Pablo will receive doses—sometimes for consecutive days—that require him to be in-patient. A fever or any kind of cold or sickness will require immediate check-in at CHLA, as opposed to an ER or Oncology Clinic antibiotic injection. It's not all tough stuff: there are a few chemo-free weeks sprinkled in. Those are weeks where Pablo's blood counts will be so low he'll need the time to recover. In the coming days, we will cover the details of the new chemo protocol.


At 11 a.m. today, Jo Ann and I met the radiation oncologist Dr Wong, and the physicist Dr Olch—the CHLA Rad Dudes. They explained the specifics of Pablo's actual treatment, the myriad short- and long-term risks associated with radiation therapy (more on that later), and the general science and terminology of it all. What I was not expecting was the preparation for treatment, which includes having a body mold made, which Pablo will be dropped into for each of his 12 rides on the radio-coaster. This is a precise business, zapping organs and bones and guts and goo. They can't allow any variation in body position. Tuesday at 7:15 a.m., we go in for Pablo's fitting. Sometime later in the week, the rad dudes will do a test run on their radiation design, with Pablo in the mold, in a machine in their test lab. Prior to that, they will test their radiation design on plastic to be sure it's lined up properly.

They showed us the radiation machine. It's as big as two Yugos, one of which can swing 360ยบ around the patient. Good thing P will be asleep during the procedures. His ever-increasing fear would be justified if he could see that thing.


With Dr M's confident blessing, we have decided to stay in LA for radiation. We have decided not to pursue radiation treatment at Northwestern Memorial in Chicago. And, so, another bridge is crossed, and we are on our way.

Dr M says the next two months will be the hardest—the double blow of radiation and chemo. I am tired in every way imaginable, so I will write more about this over the weekend, along with the potential side-effects of rad treatment.

Tonight, Jo Ann and Grady are spending the night with Pablo. Patricia and I are at home with the d.o.g.g.s, the cat, and Grinchie the fish.

We will all sleep easy tonight knowing, at least, that our battle plan for the next 24 weeks is set.

2 comments:

Carlina said...

sometimes having a plan can make taking things one day at a time a little easier. Good to hear that Pablo is on the mends from surgery. Hopefully you too are getting a little recovery time this weekend.

Anonymous said...

Jeff and Jo Ann, Our prayers are with Pablo for his recovery and treatment to go well! Our son, Andy was diagnosed with bilateral wilms in July 2002. He is now 7 years old, starting 1st grade and doing so well! I belong to a wilms tumor parents group at acor.org. Many families belong and you might find the support you need and encouragement from other families who have and are currently experiencing this fight. The web site is: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=wilms-kids&A=1 to sign up for the listserve. I hope you will join us. You are welcome to visit our son's caringbridge site (I need to update it though). www.caringbridge.org/pa/andrew. Sincerely, Stacy