I spoke way too soon about the week being uneventful. We are going through a difficult period trying to keep William’s pain under control. And it is obvious how the pain is draining him from energy; physical as well as emotional. More and more he longs for consistency, predictability and sameness in his live. And the little control he has, he demands to keep. When William’s IV pole fell over and one of the hooks scratched his face, he allowed me to treat the scratch and wipe the tears, but when he afterwards sat down on the couch and started sobbing, the biggest sadness came over me. His thin shoulders stooped forward and he cried with despair. He later told his mom that grandma cried more about the scratch than him. Lately I cry easily. I thank God for good friends that lift us up; good people that we can call who will encourage us and remind us that we are so blessed to be with William and to focus on the precious moments.


Randell and Lois created an opportunity for a small group of very special friends and family to get together on Saturday while we still have William with us. She had a budget on a string, and with the help of family and friends the day was a success. And all the time while Lois is planning and coordinating, William was there, always getting the attention he needs. And yet his pain got out of control slowly but surely starting on Wednesday. The feeling of hopelessness comes over all of us when Will is folding double with pain. Jacques (Grandpa) walked off a few times to go cry where he would not upset William more. We took Will to ER on Wednesday evening. We have not found hospice pediatrics in home treatment yet and have to go to ER every time the required treatment exceeds our limits. And so on Friday evening, Lois and Randell took him back to ER. My sleep stayed away on Friday night and when they came back from hospital at 4am I had to go downstairs. The morphine he got at ER was four times the strength he had before. Exhausted we all went to bed just to wake up a few hours later to get ready for the day. We let Will sleep until 12pm and with the help of Grandpa got him dressed for the guests. William was a very special person on Saturday.

Randell’s sister Miranda came all the way from Mississippi to visit and she did not want to go back when she saw the bad shape William was in. She wanted to know from me what to do. Go home I said. Nobody knows how many more days we have with William, but when things get closer to the end we will call everyone. I am sitting on my flight home while writing this, going home with Jacques. I plan to spend some time with my husband and catch up with all our wonderful friends and neighbors, see the dentist and doctor, and get back to the office where the most amazing people have been supporting me in very unique ways the last month. We are so blessed by the kindness, the encouragement, the positive messages sent our way by all of you reading this blog. We will pass it forward.

My flight back to CA is booked or May 1. But I have learned that plans are just that – plans. What William needs, is really what is determining our next action. Lois and William left this morning for City of Hope where they will be for the rest of the week for treatment re-assessment and scans.


Grandma Sally.