TRANSPLANT SHUTES AND LADDERS!

SEATTLE,WA,4/1/2011 CLOUDY,RAIN,45DEGREES,

When our children were young one of their favorite games was SHUTES AND LADDERS. It was a simple board game where everyone started at the bottom of the board and rolled a die and moved that number of spaces and the winner got to the top of the board first. However, along the way were spaces with ladders attached that you climbed one or two levels as a bonus, but there were also shutes or slide spaces which caused you to go backwards one or two levels. Looking back, it was a pretty valuable game in that it taught some fairly sophisticated life lessons. Don't get too cocky when you are winning, because you could end up behind on just your next turn. Don't get too discouraged if you are behind everyone else, because ladders exist and you could vault over the top of everyone else and end up winning. Win and lose as graciously as possible. Enjoy the time with the people you play with, especially if your parents play with you.

This week has been my own version of Stem Cell Transplant SHUTES AND LADDERS. We have landed on some ladder spaces and vaulted forward. The final results of the bone marrow biopsy were as good as we could have possibly hoped for. Hanna's stem cells not only make up 100% of my bone marrow stem cells, but they have eliminated all the abnormal chromosomal Myleo-Dysplastic cells. For now I am free of that pre-leukemic condition. But we have landed on several chutes and taken a free-fall backwards, as well. My (CMV) Cytomegalovirus has returned. It originally teamed with Graft vs Host Disease to land me in the U of W Medical Center two days after trasplant. I spent 15 days battling a severe intestinal tract disruption, but this time it is showing up in my blood stream. Treatment consists of putting me back on IV infusions twice a day of Gansciclovir. In addition to CMV reimergence, I have a Herpes Viral outbreak in the roof of my mouth that has grown from the size of a pencil eraser to a half-dollar in just a few days. The meds I am taking for that have stopped its growth, but drinking and eating are very painful. It's like you were too greedy and took a big bite of hot pizza and burned the roof of your mouth. We all know what that feels like and how long it takes to heal. I'm making progress on the blood sugar front and require less insulin every week. All of these problems are typical of post Prednisone treatment and they anticipate them during the last three weeks prior to discharge. I had hoped that by this time, I would be having clearer sailing and an increase in energy and vitality. Unfortunately, the opposite is true and I have to force myself to take walks and eat much of anything. We see our PA again after a blood draw on Monday, so she can keep a close eye on these new developments. I hope and pray that we can get all of these new complications under control before our scheduled discharge date of April 19th. We would covet your prayers in that regard.

I suspect that there are other outside sources of stress that are contributing to my medical free-fall. Watching my brother Tom slowly lose his battle for life for six weeks in Harborview's Neuro-Intensive Care Unit is impacting me in some strange ways. Having made the decision to remove him from all life support and walking with him through the Valley of the Shadow of Death for 5 hours, I am feeling some deep feelings of survivor guilt. It is a new experience for me to have to cope with the question of why he died and not me. It is a common struggle for survivors of war and massive loss of life in accidents. Having daily reminders of his legal and financial affairs keeps that grief wound open and bleeding. It is a new path I never anticipated taking and I don't know how God is going to bring healing to this wound. My body is telling me that I am going downhill at this time. It is disappointing not to have each day get better and better. I don't know how far this shute I'm on will descend, but wherever we land, we will regroup and with God's help and all your prayers, we will persevere. Sois misericordieux envers moi, Seigneur! Je suis epuise et surmonte par mes douleurs. Ceux qui m'entourent ne savent comment me consoler. Toi and toi seule connaisses les fardeaux qui m'ecrasent. La vie deroule peniblement et les nuits se moquent de moi. Revele-toi comme l'aube, et delivre-moi par ta main toute puissante! Some emotions can only be expressed in a language with more subtle emotional depth. (Translation) Be merciful to me, O Lord! I am exhausted and overcome by my sufferings. Those who surround me don't know how to console me. You and you alone know the burdens that threaten to crush me. Life rolls by painfully and nights mock me. Reveal yourself like the dawn, and deliver me by your all powerful hand. Some emotions seem easier to express in another language that lends itself to more subtle emotional nuances. My translation cannot truly reveal those nuances, but it will give you a good idea of my own version of a Psalm of David crying out to God for God's intervention in his life. It is the same kind of desperation that led Jesus to cry out, "My God, My God, why have you forsaken me?" Maybe we all have to experience some moments of deep sense of isolation to recognize the miracle of God's presence that we sometimes take for granted. Keep us in your prayers, we are approaching a critical period in this transplant process and it feels like life itself is hanging in the balance. Robin