August 15

Short but important post!

As of yesterday afternoon Max is on the liver transplant list!!!! He is ranked middle to high on the list. We hope to wait 30ish days or less for a new liver.
Hurry up and waiting....

August 8

Today Max and I came home from round 6 of chemo . He walked out of the hospital with his little hat on and sunglasses. What a rock star!

We met with Dr. Lopez last week. Sadly he gave us no new information, nor did he answer any of our questions.  The only new development that came from that visit was Max upsizing his trach. A big time blow to us. We were thinking that it was going to come out. It knocked the wind out of me a little. The trach coming out has been dangled in front of us numerous times, we really thought it was going to happen. Now, not only is it NOT coming out, we have to go through the down sizing process all over again.

We are anxiously waiting for the call that Max is officially on the the transplant list. They tell us it will be any day, but that day hasn't come yet. The sooner the better. 6 rounds of chemo and no real end in sight is terrifying to think about.
As I have said before, I just want this thing out of my son. SOON.