Day +1

Today is family day, the day that Alex, Eric, and I became a forever family. We have two each year, one in May for Tessa, and today for Alex. Instead of getting all bent out of shape for being here, and not having our family unit together, I am looking at this as the first day of the rest of our lives...living cancer free.

Even the events of the day do not spoil my enthusiasm for the significance of today. Both Eric and I stayed here last night, so we took turns helping Alex throughout the night. The nurse had warned us that after transplant, Alex's urine would be dark. So, while we were warned, we were not prepared for the purple grape juice colored pee we collected in the urinal. Wow...THAT was dark. After two more collections, his urine was still quite dark red, so a sample was sent to the lab for analysis.

This morning, Alex woke up, sniffled, and sneezed a few times. Not the sounds we hoped for. With no immune system, even the antibiotics and anti-viral medications he is continously on are not always effective. As soon as the nurse notified the doctors, we were put on isolation status. Of course, he hasn't sniffled at all since, but we can't take any chances. A nose swab was ordered, and, as we all know, he HATES nose swabs. I held his head and Eric held his feet. It was awful. The nurse sent the nose swab for PCR testing, which should only take 24 hours. So, Alex is stuck in this room, until he is symptom free (check), and his PCR testing comes back negative for a virus or bacterial infection.

The doctors came in en masse, and told us that there was no blood in the discolored urine, and that it was common in transplants to have it happen, but it was just lasting longer than anticipated. They want to rule out any bladder or kidney issues, so a sample of urine was sent down to the lab as well. The nurse came in after rounds, and reiterated to us that these conditions the doctors are testing for, usually are accompanied by excruciating pain, which was not the case for Alex.

By this time, Alex was bored, and frustrated at not being able to leave. Unfortunately, he decided to draw a line in the sand right in time for us to start school work. Since he was in isolation, I was "teacher" for the moment. It took over one hour in and out of time outs before he got his school work done.Thankfully, Alex's Chemo Pal showed up, and played with him for a couple of hours. Eric took the opportunity to get more work done, and I took the opportunity to nap, and get rid of the headache I had sprouted.

Lunch arrived while Reid was here, and we just ignored it until it was just the three of us again. Another power struggle ensued, and ended with Alex throwing up. We are exhausted, and hoping for a better day tomorrow. I just have to remind myself that this strong spirit has served him well through this process, and that I still have the chance to butt heads with him. Some parents don't have that luxury.

We love Alex so much... so, so much...