Week 1 of Round 2 of the Study is Almost Done!

Yes, I know it has been a couple of weeks since the last update. I'm sorry. Things have been relatively normal at home. Andrew has been back to school (3 days a week) and is liking it. His first course of oral chemo thankfully ended Monday. It was a bit stressful - the medicine only comes in pill form so we had to teach him how to swallow a pill. We taught him using tic-tacs and that worked quite well. However, when we got the pills one of them was actually bigger than a tic-tac and he had problems taking it. He threw up twice, gagged A LOT and generally was not happy about it. But after the first week, he got it down and was much better about taking them (and required less bribes).

Andrew checked in to the hospital this past Sunday to begin Round 2 of the clinical trial and to have surgery Monday morning (which went well) to replace his single port with a double port. After Round 1, it became clear to us that he needed additional access points so we decided this was the best way to go. Round 2 and Round 4 are actually two-week rounds (although we do get to go home during the weekend). This week he received IL-2, which he didn't receive during the first round, continuously for four days. So far it has been pretty unremarkable. He flirted with fevers all week long (which is expected) but Tylenol is given around the clock and has controlled the fevers so far. He actually has been alert, eating well and in a good mood all week. Some of his chemistry has been a bit off but again, all expected and manageable. One odd complication that arose is that my mom developed shingles and might have possibly exposed Andrew to them. So we were moved to a negative pressure room, are now not allowed to leave the room and Andrew had to start anti-viral medication. The good news is that Andrew should have presented with chicken pox by now if he was infected - but the infectious disease people still wanted to take these precautions just in case. The Il-2 infusion ends tomorrow around noon and the plan is to discharge us shortly after that so we can get in a good 48 hours at home before we need to check back in on Sunday for week 2. We are grateful that it has been an ok week as next week will be the antibody treatment (along with another continuous 4 day infusion of IL-2) that was really tough on Andrew.

In the not so great news category, Paul's dad has been in the hospital since Monday morning. Tests have shown that he has excess fluid and some bleeding in the brain and some "spots" have been found on his vertebrae. The doctors do not know what has caused all of this - they initially believed he suffered a stroke but since the bone scan showed the "spots" they are not so sure now. Tomorrow morning (Friday), he will be having brain surgery to relieve the pressure in his brain, along with a spinal tap and biopsy on the spots. Paul and his brother John are with him in Lubbock right now. We ask that you please say a special prayer that surgery goes well tomorrow and that we will have start to have some answers soon. We will keep you posted.

With love,
Cynthia

P.s. big thank you to Aunt Cassie for taking care of Lucia this week while Paul is in Lubbock and I am at the hospital.