Friday, January 7, 2011

January 7, 2011

we met with the oncologist today, got a lot of info, but then not so much at the same time.
our appointment was at 130, we were told to be there early for labs {that they never did} we were on time! {woohoo for us!} like it matters tho, we didnt see the dr until almost 3! we met with his nurse long before he came in, she took down our history for the last 6 months, they were under the impression that we went to idaho cause it was closer to home..{ya right!! remember that one day june 14, when you offered us hospice, ya thats why we left!!} but after explaining everything that has happened, and complaining that they hadnt gotten our history from the precvious hospitals, we were done with her...then waited for like 20 minutes and the dr finally came in!!
the scans that were done Decmeber 24, 2010 showed new spots in Jasons abdomen, but none on or close to major organs. they are anout the size of bb's but from an oncologists view point, its stable.since its not growing extremely fast {or spreading} the spot that has been removed twice in his airway has grown a little, which causes a cough. The main tumor in his lungs has grown a little, and the cluster of tumors {that havent been mentioned for a LONG time} have caused a spot in his lung to collapse, so they cant tell by the scan if they are growing or shrinking. His has ulcerative colitis, which is caused by the Chemo{ipi} which is a good sign, showing that the chemo is doing something! in dr g's words Jason's immune system is turned on by the chemo! {also all the swelling in jasons brain shows good things from the chemo} Right now we are hoping for a delayed response from the chemo. {which is extremely common} We go back in a month for a check up, theres not much we can do right now with the way jason is {not exactly back, still in zombie mode} along with the amount of steroid he is on theres not many types of chemo for melanoma that you can do, or that will work while on steroids {ipi, being one of them} so when we go back in a month get checked up on, if jason is feeling better, and back to his normal self, or at least close to his normal self, then we will be heading to LA, yes Los Angeles, California...for a clinical trial for the BRAF mutation.
So right now i am busy trying to get Jason back to normal, being awake for more than 4 hours a day, being more active and back to talking as normal as possible... and of course saving up money to pay for the trips to california...im not sure the schedule of the chemo, or even if we will get into it, but were planning for a yes! and trying to prepare for it...

3 comments:

  1. Hope,
    I work at Malt-O-Meal and I am putting in a grant request with MOM Cares in Jason's name for 2011. Is your address the same as last year? You and Jason are always in my thoughts and prayers. Kari

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  2. Hopey! who has 2 thumbs and only lives 60 miles from LA? this guy! (haha!) so seriously, if you guys end up going to LA, when i get back to the states, just call me and i will try and take work off and i will be your personal shofer. i can easliy get off work to come get you guys from the airport and you would be more than welcome to stay at my place. that way you dont have to waste money on a vehicle or a hotel. so you better let me know! love ya!

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  3. Kari- thank you so much for thinking of us! yes our address is the same as last year.

    Brit- i was going to ask how far you lived from LA,an hour isnt bad! i would LOVE for you to be our shofer!! :)) ill let you know as soon as we do!

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