Monday, October 28, 2013

Days +59 to +66: Rock Star

Ezra made it through yet another challenge like a rock star on Friday. Although we have seen improvements with his stomach and leg pain, the doctors still really wanted to perform the PET scan because he is still having enough pain that there is reason to be concerned. We were so worried that putting him through another round of testing when he is already traumatized by the hospital would make everything worse. But Ezra never ceases to amaze us and he rocked the test like it was no big deal. There was a lot of back and forth about whether he would need anesthesia in order to get through the test, but we knew once we saw his calm reaction when we explained the test to him the night before that he would be fine. Sure enough, he stayed perfectly still and followed all instructions, despite being very tired from an early wake-up call and very hungry from fasting until 2:00 when the test was finally over. He took the instructions not to move so seriously that he held in his laugh before the test even started when Bert photobombed this picture!  It also helped that the machine was called "Discovery" like his second favorite space shuttle and there was a "countdown clock." Somehow Ezra made it more like a ride than a scary test. The most disturbing part for us was being handed a card that said our son would be radioactive for the next 48 hours. Scary stuff.

Thankfully, the results of the scan did not show anything problematic. The assumption is that the leg pain is from engraftment and deconditioning of the muscles and tendons, and the stomach pain is likely left over irritation from the chemo and mucositis. We are working on getting a physical therapy plan in place. He may have a slow recovery ahead of him, but as long as he moves in the right direction, then we are fine with him taking his sweet time.

We have thankfully seen more improvement. He had a good week with less pain, although some days are better than others. More energy, more playing and more giggles. The other night he ran down the hall yelling "I'm really wired tonight!" Um, yes he certainly was!

We have been able to reduce the oral pain meds and he has tolerated the decrease so far. We will hopefully be able to continue to slowly decrease the pain meds as he improves.

Ezra's hair has been falling out again over the past couple of weeks and has gotten thinner. We are hoping it is a sign that new hair will start to grow soon. With the first transplant, his hair started growing back around this time post-transplant, but no signs of new hair yet. It will be nice to finally watch new hair grow in instead of watching old hair falling out. 

It is also incredible to think that we had just been discharged on this exact day (+66) after the first transplant. This time around, we have already been home for over a month. Although it has been an extremely difficult first month home, we are so grateful to not be in the hospital. We are trying our hardest to keep Ezra healthy in hopes that we can keep him home from here on out.