Saturday, May 19, 2012

Update - FINALLY!!!

It's been a while since our last update. Sorry about that. We have had a couple of back and forth, up and down weeks. Every time we thought we knew something, we were waiting on some detail which would ultimately change everything. All the updates would have just been confusing. At any rate, here we are again...

After coming home from Cincy 2 weeks ago, Aida had a tough week. We went to the clinic every day except Saturday for transfusions. On top of that she was having some pretty rough & scary side effects (presumably from the chemo drug.) Worse, there was some sudden growth of several lesions. So on Saturday night (before Mother's Day), I emailed the doctor in Cincy to give her an update. She called me the next day (Mother's Day), and things got hairy after that. The timeline we'd been planning on was accelerated. The MRI that was planned for a month out came Tuesday. Our expectation was that this would be used to prep for surgery on her liver. Instead, we got the news that night that surgery wasn't an option. I believe the doctor said "she wouldn't make it off the table." Half her liver is covered by a tumor, and the other half looks like a marbled steak - too many small hemangiomas to count. On the up side, Mark and I don't have to make a decision about a surgery that could be very high risk. On the down side, they really have no idea what to do.

The conversation that night was a scary one - that I had been awakened from a nap to hear...by myself. The doctors were using words like we'd heard in a conversation once before...catastrophic, devastating, life threatening. I held it together until Mark got to the hospital then had a mini breakdown. In reality, the day to day concern is the same as it has always been. Only now, it is more intense because she is needing transfusions more and more. If the numbers get too low, she risks bleeding - most importantly - into her brain. Cue scary words. We were able to talk to the Cincy doctor (the expert) late that night, and she calmed our nerves a little bit. As long as we can keep her numbers up - which so far we basically have - the risk of bleeding is lower. The concern is that the tumors will continue to grow, consuming more and more until we end up living in the hospital for multiple transfusions each day...and then who knows what.

The liver is believed to be the biggest problem, so having that option taken off the table makes things even more complicated. There are several pretty large ones outside the body that are much less risky to take - similar to the biopsies she had before. I personally believe this would help, but nobody really knows. I expect we will do that before too long, in part because the one on the back of her head is beginning to get in her way. They are now "throwing everything at her". This means they have added an immunosuppressant drug which carries some significant risks. Primarily they are concerned about infection because in addition to this drug she is taking what Mom calls a super dose of steroids - more than triple what she had before. Among other preventative measures, we've been told not to take her out - except to the clinic, of course.

We'll be spending quality time at the hospital tomorrow like we did today, but today we had a bit of GOOD news. Her numbers were higher than usual today - much higher. She's still nowhere near normal, but she is above the threshold they want for the first time in WEEKS. We told the nurse it was a miracle. No really, a miracle. She said she believed in miracles. :). Mark texted our doctor in Cincy to let her know, and she said we made her day. All that said, we are still intent on taking it all a day at a time. Her numbers could drop again tomorrow, but for today...we're celebrating.

Thanks for continued prayers for all of us. We feel the support every day!

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