So much happening!

What a week!  We have survived Irma and are so ready to come home!  We are adventured out!  After the storm the RMH ended up evacuating us to a hotel since we did not have power and we unable to get to our appointments since we were surrounded by water!  This means no car as it was flooded in ( dry but unable to get out of the parkade)  so we were relying on taxis.  The UF proton center was up and running Wednesday so we have been set back a few days.  Wednesday night Abby's appt was for 6:35pm but they were running 5 hrs behind.  This meant that her treatment was at 11:35pm.  The cab company only had 1 driver due to staff evacuating so we were sharing cabs with other proton patients.  The family we shared was supposed to be at 9:30 but due to the delay went in at 2:30am so we didn't get back to the hotel till 3:20am!  Late night, but they were able to get all the patients in which is what really matters!  We spent two nights in the hotel before the water was gone, power restored and we were back to the Ronald McDonald House.  It was so great to have our car back and be able to come and go as we wanted!  Abby only has two treatments left which means we will be coming home next week!  We can hardly wait!

We had our last appt with our doctor here and he said Abby is doing really well!  We won't know for a long time whether this treatment did what we are hoping or what the long term side effects will be.  The expected short term effects are possible increased hair loss and extreme fatigue.  For some reason the fatigue usually doesn't hit for 4-6 weeks after treatment is complete and can last for quite a while (weeks, months and sometimes years). The other effect that is most common is cognitive effects which do not begin to manifest themselves for months or years after treatment.  Cognitive effects of course also vary widely from simple delayed processing and comprehension speeds to a measurable drop on IS of about 10-15 pts.

As far as confirmation of whether the treatment is successful only time will tell.  There is an expected growth of the cysts over the next few months but then we will hopefully see a reduction in the amount of fluid that the tumor is producing.  The doctor described it as a faucet.  The faucet is open and the radiation begins to slowly shut the valve but as the valve is closing there is still fluid filling the cysts until the faucet is completely turned off.  If the treatment works then the cells of the tumor will for and no longer produce the fluid.

Abby is very excited to get back home to family, friends, school and her activities. (Me too!)  Our flights are booked and we should be home on Rocky by the 24th!  Can't wait!