Even Hard Days Have Good Moments

We've been preparing for days like these. And there will be more to come. Today was not a sunshine and lollipop day. The lights have remained off, the curtains drawn and we've had to step outside the room to cry.

William is in a lot of pain, but all is completely normal and as expected. Meds are helping to keep him comfortable. He told Jennifer, a Child Life specialist and Millie's handler, that today he's "choosing not to talk". That's serious stuff for our little motor mouth. It's probably a coping mechanism and a way to just not deal with his realities. This is good and we'll respect it. The morphine has helped him sleep for much of the day and that's good. He's not a fan of his catheter, but can you blame him? He'll stay in the ICU another night for observation.

We met briefly with one of our oncologists, Dr. Yim, to provide further answers to the puzzling question of Doohickey's diagnosis.

What we learned:
1. It's not completely conclusive if Doohickey has brothers, but he appears to be trying to have offspring.
2. He has stage 4 cancer, as indicated by the fact that the bone marrow is fully involved
3. Stage 4 means the cancer has the ability to spread anywhere blood goes.
4. Stage 4 is not always as bad as it sounds, but it's not good either. For some cancers Stage 2 is harder to treat than Stage 4.
4. Constant ambiguities makes us exhausted and anxious.
5. The cancer also involves his liver and pelvis bone.
6. They assume that it is not a standard tumor, and the diagnosis may take until Monday or much longer.

The tears have mostly dried up for today, but we still can get teary at any moment. Sometimes we cry because good things happen. Today we cried for good things too.

William's friend, Zak, loaned him his DS. That DS has been another coping mechanism. He took it with him to surgery and just zoned out of everything swirling around him. This morning when he woke up, that was the first thing he asked for and it helped him not focus on his discomfort, homesickness, and fears. William doesn't want to look at his Broviac (central line in his chest) or listen to our attempts at 8 year old humor about catheters. He just zones out into the video game world. That makes me happy today. (Did I really admit that?)

My happy tears came from a very touching gesture from the Critz family. William and their son, Carson, were in the same class and on the same baseball team. Carson and his dad dropped off a package for William this afternoon. Unfortunately, William can't have visitors for now so Ryan and I met them in the hallway. Several hours later when William woke up, we asked him if he wanted to open some presents. He declined. We encouraged him to do so. With out much talking or expression, he made his way through the bag. He took out a small box and unwrapped it to find a DS. His eyes and mouth flew wide open. He didn't make much noise, (remember, he chooses not to talk today), but looked up at us with surprise and whispered, "It's a DS! Thank you, Carson and his sister!" Thank you, Courtney and The Toy Clean-up project! An excerpt from Courtney's blog reads:

"I am 13 years old....I put together The Toy Clean-up Project a couple of years ago. The Toy Clean-up Project is when I collect toys from all around and clean them up to [sell]. I have been able to give money to the St. Jude Children’s Hospital by doing this. Another way I use the money is to help the Kaiser pediatrics in Roseville, all the children get a little something. At the Kaiser Hospital, not only was I a patient there at one time, I am one of their success stories."

Courtney and Carson, you made William's day and made him happy on a not-so-happy day. Thank you!

Ryan and I cried happy tears.