Will has a goatee..

This week is reasonably un-eventful compared to last week. Wednesday around noon William went upstairs to my room but missed the first step and his chin hit the 3rd step. His tongue was involved in the accident too and within a minute after seeing the bloody mouth and split open chin Lois, William and I were in the car and off to ER. A couple of hours later we are back home and packed the car to go to COH in LA. We got to Pasadena around 9 but instead of Ronal MacDonald Home we went straight to the Fire Department (they are family by now) where a welcoming party fussed over the new scar and the five stitches. William also shared photographs of his Hermit crabs called ‘The Dudes’. The next day at COH was just routine labs and a doctor’s visit as we still don’t have a hospice arrangement that offers in-home care. The good thing is that since last week we now have an agreement to visit Marshall Hospital (10 miles from home) for medical care and get support from Partners in Care who provides the rest of the hospice support - just not medical service. Apart from scans in two weeks the trips to City of Hope might come to an end as we can now get medical treatment here close to home.


We now also have in place a POLST form - The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes. Lois has to carry this form with her at all times.

When showing this document to any doctor that treats William in the future they have to abide – no more arguments about blood transfusions or other treatments being in-appropriate at this stage.

There are subtle changes in William; lack of energy being the biggest change. He also tends to withdraw from us on occasion and I think it could be depression. He is easily frustrated with things and would then cry. However when he sees friends the old William is back. Now that spring break is over we can hook up again with old friends.

Thank you all for your ongoing emails, prayers, encouragement and love.

Photos : Will eating cookies and milk. Will has a split open chin.