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June 7, 2013 at 10:13 pm #21353zephyr66Participant
hi all. i know i disappeared for a while. and, it’s not for bad reasons which is wonderful to report. i have been very, very busy as my work has come up and that’s a blessing so financially, we’re getting back on our feet. and, i’m able to work because amy remains stable and keeps making slow but definite progress. the tumors are still down and she has no pain from them. off all medications (thank goodness off the morphine) and is into her 4th month of the BRAF/MEK trial through ucla with dr. ribas. last scan 6 weeks ago tumors had stayed the same size as scans 6 weeks prior. he said that often happens and they stay stable. she is getting her next set of scans as i type. we should get results monday and hopefully more good news. her legs are still far from normal but she is walking better. still little feeling in her left leg but she can walk up and down stairs slowly without the handrail if she tries and this is huge considering i used to have to put her arm over my shoulder and boost her up each stair cause she had no feeling or strength or ability. she does get a lot of fatigue from the trial and we are disappointed about that but she deals and does her best. she was a huge athlete before (long distance runner and mountain biker) and is going to purchase a high quality athletic grade recumbant tricycle. i am so excited for her to start riding and being able to sweat and push herself physically like she enjoys. the recumbant should be great for her back and i think you can’t ask for better rehab for her legs. so, i hope and pray this medication keeps on working. in adddition, a relative graciously came out of the blue and offered to help with a downpayment on a home since we are renting now after having to short sale our home in the desert where we had no medical care. so, we’re moving at the end of the month and escrow should close the 26th!!! i’m so excited. and, feel so blessed and fortunate. and the good thing is that mortgage, taxes, insurance etc will be less than i’m paying for rent. whew. and, i’ll get to have the chickens, dogs, my horse and i’ll be getting a dairy goat to be the horse’s companion. AND i’ll be four miles from my mother and brother so if amy has a decline again i will have support nearby and it won’t be nearly as stressful and scary. sorry i have been absent. after the move life will settle down and i’ll be on regularly and hopefully before we move as well. thanks, everyone. this site has been a blessing along the way.June 8, 2013 at 12:24 am #61189Catherine PooleKeymaster No news is good news? So happy to hear this and you have my lifestyle at heart, a horse, a goat, few chickens. I’m pleased to hear about Amy and so happy you took that path. Thanks for checking in!June 8, 2013 at 8:18 pm #61190Shirley ZParticipant Hi Sylvia,
So happy to hear that things are on the positive swing up for you and Amy. Hoping things just keep getting better for you both. You have been through a lot and truly deserve some good news.
The new place sounds wonderful, and its so nice when you have family close by for support.
Shirley ZJune 8, 2013 at 11:22 pm #61191AnonymousGuest
Oh man Sylvia, I’m sooooooo glad you and Amy are doing well! For some reason you guys have been on my mind the last week or so.
Wonderful news! Please keep us posted on how Amy and YOU are doing.
JeffJune 10, 2013 at 8:47 pm #61192zephyr66Participant
Thanks, you guys!!
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