Wednesday December 14, 2011

We have been on a long journey since April with lots of highs and lows. Today is amongst the lows.

Shannon had an emergency MRI today to try to get to the bottom of the loss of function in her right side. We were hoping that we'd see a lot of swelling caused by bleeding in the brain from the Crenolanib doing a number on the tumor. While there is a small amount of bleed from the tumor, what the MRI showed is that one cystic part of the tumor - kind of like a blister - is expanding. The position is just so that the spinal column is being pinched and the flow of the spinal fluid is being stopped. Hence, the paralysis.

Dr. Wetmore introduced us to a neurosurgeon today who may perform a procedure to reduce the swelling in the brain by putting in a stent. We will try steroids for a couple more days before making that decision. While this procedure might relieve some of the pressure, it does not access the tumor or improve the right side function.

So, as prepared as we were for this trip to Memphis, we now are dealing with something unexpected. The truth is that this loss of function was coming slowly over our last few days in Rochester. We had seen it in Shannon's facial droop and coordination. It is just a coincidence that it reached this tipping point shortly after our arrival in Memphis. While it is very hard to be away from home at this time, taking Crenolanib gave us the best chance to fight this tumor. And to do that, we had to come to St. Jude.

Shannon told Dr. Wetmore that she wants to do whatever gives her the best chance - drugs, surgery, whatever. She's still trying to fight. She wants to stay on the study for herself and for the kids who come next. So she will keep taking the Crenolanib until we see more results after 4 weeks. There's still a hope that it will show it can stop tumor growth.

The support from Minnesota is so appreciated. Shannon wishes she could communicate more with her friends, but she just hasn't been capable of it. Texts and e-mails to each of us remind us of the support we have. The Rochester Athletic Club and the RAC Tennis Department are putting on a big fundraiser for Shannon this Friday morning. I wish we could be there.

We all cried today, but Shannon cried the least of all of us. She was busy figuring out how to manipulate a wheelchair with only one functioning hand. Thank goodness she's the toughest of us all.

We will try to sleep tonight, hoping for yet another unexpected turn to come our way. If we've learned anything on our cancer journey over these past nine months, it's that you can't predict what will happen next ...