Update from Linda; May 6, 2007

To Charley's Friends and Family,

What a joy to see pictures of Charley walking and smiling : )We thank God that Charley has more energy, can laugh at the clowns and enjoy the garden at Children's Hospital. We celebrate his one year with Deborah and Nehemiah as well as how God has given him the love and security of this devoted couple.

Charley is needing less oxygen support (he's off the Bi-PAP for 4 days) but is still short of breath. Though his spleen is enlarged, it has not continued to get larger but rather has been the same since 10 days ago. These symptoms will be watched carefully to understand what they may indicate.

Charley's oncologist returns from abroad on Tuesday and they hope then to know when a bone marrow test can be performed to see if his last chemotherapy was effective against the leukemia.

I spoke with Nehemiah by phone Sunday afternoon. It has been a difficult week for them as they try to plot out Charley's future treatment plans. Just over a week ago, Charley’s oncologist said that Charley’s treatment had failed because of Charley's enlarged spleen as well as an overall weakness and wanted to move to hospice care and even signed a "no intubation" advance directive. However, Charley continues to show signs of improvement that indicate that his case is not a “typical” case. His doctors are very encouraged by this. Deborah and Nehemiah are diligent researchers who have been searching the literature to find new and innovative therapies such as immunotherapy. Children Hospital Boston does not offer these alternative treatments.

My prayer for this family will come from Romans 15:5, "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Pray that God would direct their steps as they search out new and innovated treatment options beyond the conventional. This road may lead them to other research institutions beyond Boston.

To that end, a fund will be established to help defray medical costs. Are you aware Deborah has now been on leave from her job for 8 months. Nehemiah also, since April 1, 2007 is not taking any salary. The demands of Charley's medical treatment do require both of them to be by his side since it is so life threatening and can change in an instant. More details of how to contribute will follow.

Thank God for Charley's energy and smiles.
Thank God for you, Charley's extended family in Christ - for your support and help.
-Linda

Pray:
* For a good outcome of the bone marrow test - that it would show no leukemic cells.
* Charley's spleen to return to normal as well as for his breathing to become stronger.
* For wisdom, unity and Holy Spirit led treatment decisions by Deborah and Nehemiah.