Nan's condition is weakening

Dear Family, dear friends, dear fellow GISTers,

Nan had a quiet night but about 8 this morning she was very troubled and was moving her arms, trying to move her leg out of bed. It took a while to calm her down and finally she rested again. John and Karen Cress came to visit and were with us several hours. They have been no only our pastors but also our friends for many years and we have been through many good and hard times together with them. It was precious time as they held Nan's hands, rubbed her arms and spoke quietly to her reminding her that Jesus knew right where she was and loved her. I too was encouraged as we shared stories and hope together. They have followed Nan's condition with frequent visits and many phone calls. During surgery #4 in San Ramon I spent some pretty heavy quality time on the cell phone out in the parking lot with Karen as she led me away from feeling guilt for Nan's disease and into God's forgiving love. In one sense I have never looked back again in the same way at my past knowing how much God wants to love me here and now. Learning what I learned that night and accepted as freed me to be a much better caregiver for Nan and has allowed me to love her even more than ever.

Mary arrived on time this morning and Sharon, Dana and Mary made their way through traffic to the Oakland airport. Sharon boarded a plane for home but was stuck in an airport somewhere in Texas for an extra hour the last we heard. How we will miss her. Sharon has been gifted by God with a special measure of common sense, a deep powerful faith and a very generous heart. She is one of those people that you feel privileged to be with, she is that special and we have the wonderful fortune of having her in our family. Just now she called to say she was finally home but her luggage was not. Bummer

In a few minutes I am leaving, taking a chance to be away from Nan for a bit, to attend Keanna's Christmas Concert at her school in Brentwood. I am fully aware that something could happen while I am away but nan and I have strong feelings about being there for our family and I know she would say, go so I am going. Keanna and Nikki came by a little while ago and Keanna played, talked to her Grammy, sang some of the songs for us and then dressed in her special dress, wow is she a cutie. Curled hair, perfect dress and shoes and tights, what a kid.

Our world has pretty much ground to a halt as we gently wait on God's timing. I was moved to tears, fountains of them it seems, when I read the comments to the blog, Nancy's moving tribute to Nan was so special, the comments from fellow GISTers, our regular friends who write, my classmate from Laurelwood, it was too much and I was overwhelmed as I sat here reading. My eyes are sore from crying today and I make no excuses for the tears. This is a terrible impossible time, to watch your "better half" as they say in such a state, fighting for each gasp of air, trying to wake up, trying to communicate, trying to deal with the terror and fear. All of the family knows and has expressed that if it were up to us Nan would just go gently to sleep. However it is not up to us, it is up to Nan's body and the Spirit of God now.

Terry came this afternoon and supervised changing Nan's linen and dressing. Another place is trying to open on the tumor, a very large place, not open yet but could happen soon. We gave Nan a bolus of dilautid and atavan and she rested for awhile. What a brave trooper she is.

So for tonight we send our love. I will actually send this out later when I am back with a photo or two to add.'

Well I'm back and Keanna did a really good job with the motions, the words and the whole program. We sat there and beamed watching her in action. The video tells it best but I've included a couple photos and one of John and Karen as they visited with Nan this morning.

Nan is about the same, still breathing with effort. Terry found her vitals, heart rate, blood pressure, lungs to be in good shape this afternoon. However she has just too many things against her at this point in time.

We have fought this battle for 11 years and have traveled thousands of miles, taken hundreds of flights and stayed in dozens of hotel rooms during the time we searched for a cure. We have had some outstanding medical people and some who probably should be in other professions but mostly we have been treated with dignity and professionalism. Boston, Dana Farber especially, has been very good to us and Brigham and Womans Hospital intensive care and their surgical team under Monica Bertagnolli were incredible in extending Nan's life. Our search has been honest, relentless and energetic and it has given us years more to enjoy and savor. Nan does not regret any of the attempts we have made at recover. She always stepped up to the plate when something new was possible and said, bring it on. The has been scanned hundreds of times, had MRIs, PT scans, upper GI, lower GI, endoscopy, blood work up, heart scans, dozens of EKGs. We have given this the best possible fight we could and God was good enough to grant us enough money and space on credit cards that we never had to say, we'd like to try this new avenue for possible healing but we can't afford to, we always found a way and often we were helped along through the process. We have lived pursuing life and we have had a lot more life than many predicted many times. It is very hard for me personally to begin to accept that there is nothing more we can do at this point but prepare for the end. When you have fought this hard for this long it becomes a way of life. Yet we are now told that Nan's life could come to a gentle close at any hour or any day.

So we once again thank you for your participation in our journey. Many of you have helped us personally, others with emails and letters, still others with financial gifts while most importantly many of you have faithfully prayed for Nan for years. We are humbled by your love for our family and for Nan especially. Where would we be without you? Because you cared Nan lived longer and better, because you cared Nan had someone to talk to on the phone, to email, to visit with, to look forward to seeing, to hold her hand on dark days and rejoice with her on victory days. We have not walked this road alone, you have walked it with us and for that reason we have never felt alone or defeated.

We send our heart felt love to each and every one of you. I know that many of you have shed tears today as we have here at the house. Facts are, we are saying goodbye to a beautiful woman in the prime of her life, its wrong, its sad, its terrible, its heart wrenching and it is going to happen soon. So what will we do? Will we curse God and blame Him? Will we decide not to get so close again so we won't hurt so much when we suffer the loss? Will we just think of ourselves and how we feel?

I think we will survive in spite of the terrible loss and pain, I think our faith in the Almight God will survive too and we will look forward to a future reunion with no suffering, no pain and perfect bodies. We will endeavor to turn our energies to other who are also hurting and in danger. We can't let Nan's struggle be in vain, we have to take what we have felt for her and with that energy help someone else that God will place in our path. I keep thinking what would Nan want? What would she do? It helps because I actually do know in most cases what she would want and how she would go about making it happen, I know her that well.

So we move forward. I will let you know about any changes as soon as I can and I seek your prayers tonight for a calm night, a calm spirit for Nan and for God's will to be done in His way and at His time.

Love from our home to yours

Nan and Tim and Marilyn and Jan