Letter from Cindy

All,
We received the news late last Friday my Mom has been turned down by Mayo for a liver transplant. The purpose of going there was for evaluation which is required pre-transplant. While there we received fluctuating reports that seemed promising to not. Then, the 'selection committee' comprising 14 doctors were going to meet last Weds to decide whether or not to proceed. Initially, she passed their strict MELD criteria; however, at this meeting, it was unanimously decided not to put her through this citing several factors. There was also great concern the necessary aggressive radiation would blow out her liver, instantly killing her, since her liver is so cirrhotic from the cancer. 4 people came forward who are the same blood type as her & were willing to be considered as living donors & undergo the evaluation process; but, still Mayo is saying no due to the fact she is stage 3 or 4 & just would not be able to bear the required radiation.


I have received constant requests to see how she is, what the status is, etc. It's been hard to keep up. I have admittedly held off replying because we just needed time to digest this & at times the so-called prolific me was at times incapable to even speak at all. Despite the fact I knew this was probably the reality & saw this forthcoming, it's like when you know something in the back of your mind but when you are finally told, you still need time to accept yielding to God's will. We also had to ensure all family received this news first as well contact National Foundation for Transplants who were the runs running her campaign as directed by Mayo. She will no longer be highlighted by them nor have a website.


Initially she was quite upset to get the news; however, her spirits are good. She stated she accepts this. Her treatment is now going to be taking chemo by pill form. The rest will be palliative. Just prior to Mayo's call, she had just bought luggage with wheels in hopeful anticipation she would return there as we were supposed to. When I asked her what she is going to do with that now, she smiled & said take a trip to the Grand Canyon because I always wanted to see it. She has a peace in knowing being finally turned down could have been the reality & states she is satisfied she went there to do all she can especially to get not only a 3rd but expert opinion. While she was there, she agreed to be part of a study that will hopefully pinpoint cholangiocarcinoma in the years to come since it is such a rare cancer. Mayo also told us they do NOT know how she got this. We were told life expectancy is 1 year, 2 tops with chemo. But, staying positive, who knows for I have seen people on the cholangiocarcinoma.org site I registered her on say they were diagnosed at some point but there are some there who have in their blogs they are now 6 yrs past the diagnosis, etc. It really is in God's hands & His will. She has acknowledged this.

Via National Foundation for Transplants, all current campaign & fundraising efforts will remain in place until they run their course which will cease on or approximately to the end of Feb. All funds that they have received were applied toward the transplant evaluation process [bills, prescriptions, expenses, etc.].

I can't thank you enough nor tell you how your display of love, support, care, friendship, encouraging words, notes, cards, & prayers that have been extended to my family, her, & me have meant the world to us & me personally. We are simple, modest, & private people, & it has not been easy to be thrust involuntarily into the public spotlight overnight like this; however, the continuous worldwide outpour has been astonishing. When we were at Mayo in between appointments or when she was not tired I would show her as much as I could all the messages of hope, prayers, emails, etc., bestowed to her on her Facebook, Myspace, & Twitter accounts that the Transplant Foundation said to set up. It's had us at times speechless & in tears. Thank you for touching us & for your kindness that has sustained us. It has meant the world.

There is good & reasons for all things & there definitely has been good to come out of this that has, I think, blessed all of us. I know I am personally more humbled & appreciative of all persons & life itself. People also have stepped forward saying they would now consider donating organs &/or have an expanded educated awareness of the importance of organ donation they never knew much about before. Things are not in vain & I have no doubt besides the child's life my mother once saved that through her life & this fluke rare cancer that others' lives will also be saved &/or improved.

Thank you so much for all you did. I am sending you this as a blanket message to everyone fully knowing what many have you have done &/or if I thought you also may have anonymously done something as well for which I have no way of knowing. I am extremely grateful, appreciative, forever touched, & changed for the better. If any of you have any questions please don't hesitate to ask. I am doing OK & strong but wanted to be able to collect myself so I could better come to terms with this news as it has been an emotional week; however, God is good, so are you, & I am happy He is good to have brought me the goodness in you. Thank you so much again.
Love,
Cindy Stites & family