Twin Falls November 4-5

so the last couple of weeks with pneumonia and headaches have pretty much been hell, and just kept getting worse as it got closer to the dr appointments so the drive {3 hours} sucked more so than usual!

Thursday November 5-

we had our appointment with the drs at 1 along with blood work... and jasons head was killing him! he gave it a 9 on the scale of 1-10 {which is amazing he gave it a number since he NEVER has before, at any hospital} so the PA ordered a brain MRI to be done but of course the radiation department was BOOKED! along with all the other places in twin {booked until tuesday} they even ordered it STAT but oh well...we had to wait. After jason had his blood drawn we went to talk with the PA who did a nero exam, and like a half a physical, then checked his vitals, he did orthostatic vital signs to check jasons hydration level, and he was dehydrated. which doesnt surprise me since the past almost 2 weeks he has done nothing but sleep and puke. so after meeting with the dr and trying to figure out a time to do an MRI jason was shot up with some saline to hydrate him back up, along with anti nausea medicine and dexamethazone {steroid, to help with his head ache} while we were waiting for him to finish the fluids, steve {nurse} came in to tell us the soonest they could do the MRI would be friday morning at 6 AM!!! {and of course we had to be at the hospital at 5:45} thank goodness where we were staying was right across the street from the hospital. {so we made it on time!}

once jason was done with the fluids we were done for the day so we went over to our extremely ghetto apartment, then got some dinner and called it a night {extremely early!}

Friday November 5

well our day began far too early! we had to be at the hospital to check in at 545 for jasons mri, which felt like it had taken a lifetime! and after the mri we had to search the hospital to find someone to flush his port with heparin. after being sent to the cancer center and noone was there for another hour we went to the ER, and thankfully didnt have to wait very long!

our next appointment wasnt until 1, so we had some time to lounge around {nap}

As soon as we walked in the building steve took us back to a room, so of course we knew there was bad news {story of our lives} steve informed us that the mri didnt come back good...there are new tumors, most of the tumors have grown and they all have more swelling... after steve told us all that was going on the PA came in and told us the same thing...they wanted to up Jasons steroid to 12 mg a day {he started at 2, but we were told that it isnt uncommon to see people with brain lesions to be on 16-18, surprise to us!} so after deciding on 12 mg we went over to get shot up with chemo. during th e3 hours of chemo, steve came over to talk to us, the change the steroid dose over and over again! we settled on 8 mg. it was hard to make a decision based on the fact the the trial chemo ups T cells where the steroids suppresses T cells, so have a steroid dose too high it counteracts the chemo, which there for make it useless. we think Steve was kind of in shock that we had taken the news so well, he kept asking us if we had any questions, or if he had explained it that well. I informed him it was like the 3rd time we had received this news, so we pretty much understood what was going on.

now decision for the brain tumors, we are trying to see if jason can have any more radiation to his brain {full brain or stereotactic radio surgery {which was done to the first tumor in january}} we were given the option to go to logan, arizona, or back to the huntsman. Then the option was taken away from us, since all of the drs, and trial people think that since the radiation was already done at the Huntsman {SLC} it would be best to go there. so now its a waiting game, to hear back from the Huntsman to see if they will agree to more radiation or leave us be... they called monday to tell us they were waiting for the MRI from Twin, then Jasons Neurosurgeons would be meeting wednesday morning to decide what to do, and we will be called once they have made their decision...

Also! we found out that the trial jason is in, in Twin just opened in SLC, so we may be transferring to go there so we dont have to drive as far {and i dont have to take as much time off of work, surprisingly bills dont stop coming when the money does!!} it is a 3 hour drive to twin {one way} and we have to go at least one day before he is to be injected with chemo for blood work, since the chemo comes from boise so it needs time to get to twin, where as in SLC the huntsman will have the chemo and it takes about 15 minutes to get results from blood work, and its only an 1.5 drive!

honestly were not getting our hopes up on more radiation, the Huntsman has already told us once they couldnt do anymore...so it will be a major shocker if they decide to do more radiation... were not exactly excited to be possibly going back to the Huntsman, but were up for anything...good news has eventually got to come our way....were too young to get nothing but bad news...