Beach fix

I reached the end of last week worn out with the medical world and sick of them messing with my kids. Luckily Aaron agreed we needed a beach fix.

On Friday, Aaron ditched work after a morning meeting and we took off for one night at the coast. The kids were so excited they had to be pretty much peeled off the ceiling. Their enthusiasm energized me for the packing extravaganza that precedes even the smallest overnight outing for our family. Just as the big kids have mostly moved out of the stage where they need special gear and food, Samson has taken the baby equipment thing to a whole new level. Our overnight packing covered our dining room table and spilled onto the floor. Undaunted, we staggered out the door. We had made it across, but not yet out of, town when we had to return home -- but only once -- for critical forgotten items: the 2:00 p.m. antibiotic dose warming on the counter, the oxygen saturation monitor, an oxygen tank, and my swimsuit. Check.

Actually, I had not really forgotten the oxygen tank and monitor but rather felt it seemed negative to bring them. Aaron didn't really see this the same way, which was probably reasonable. Hey, we have a minivan, why not bring the oxygen?

We picked a perfect day for the beach. It was warm and gorgeous and so much fun. I felt very conscious that this might be the last day we have like this for a long time, and I tried to soak it in without letting it make me sad. I did a good job of not being sad while we were at the beach -- I just enjoyed our fix. But today, Sunday, always a bit of a gloomy day for me, I could not shake my sadness.

This week and next are booked with medical appointments for Samson, starting with sedation for full body CT scans on Monday. These scans are to look for hidden infections that need to be treated prior to starting the transplant process. We also have consults with infectious diseases and with surgery regarding the catheter that will be put in Samson's chest to administer his medications. The word is that he is also going to have another bronchoscopy to rule out active infection in the lungs prior to transplant. I have yet to discuss this with the pulmonologist, Dr. Powers, or with Dr. Nemecek, but the transplant nurse, Allison, let me know that is the plan in the works. We may be able to combine the bronchoscopy with the catheter surgery the week of March 29, which would save us one sedation.

Also from Allison, some test results. Samson's repeat marrow biopsy still shows MDS with monosomy 7, this time in every cell tested. Still, however, it has not developed into leukemia and that means our window for helping him is still open. Which means it may be awhile, but the next beach fix awaits us.