More Tumors

Last Thursday she was having difficulty breathing so we did a chest x-ray, this showed fluid build up around her right lung and continued growth on a lung tumor.  Today we did a new chest CT which confirmed the fluid around the right lung, but also fluid around the left lung, and heart, as well as growth of 3 tumors.  A further heart echo showed definite fluid around her heart now too.  The fluid levels are not at a critical level today, but they seem to be increasing rapidly so we will be back at the hospital on Friday to run additional monitoring tests.
Based on current lab results and these findings Chemo is no longer an option.  The chest radiation we were looking to start is also out of the question due to the dose size that would be necessary to deal with these 3 fast growing tumors.

So we are left with trying to get our insurance to approve Tarceva.  They contend is it not FDA approved for use in anyone under 18.  We know that, but we have a valid Rx and doctor approval.  So Childrens has decided to order the drug for us and we will just have to either gain insurance approval or we will soon have a huge bill to deal with ($80 per pill/ 60 pills per month= $4,800).  Success rate is not great- 10% see a 2-3 year life, but it is the last option available so we have to try.  There are still no clinical trials available.

Make A Wish trip needs to happen very soon or it will also be out of the question.  The next month may be about as far as we will get with travel approval from the doctor.