Thursday, June 3, 2010

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.


  1. Ryan and Julie,
    Jenny Ware just sent me the link to your blog about William. I just want you to know that we will be praying for him and your family! We are sending our love to you guys and I'm going to put his name on our Temple roll! This doohickey is GOIN DOWN!!!! What a kid! LOL
    Love you guys!

  2. We just heard too and you guys are in our prayers. We are here for you and your family.

  3. Julie,

    I just heard last night.... Know that William and you all are in our thoughts and prayers and if you need anything--a grocery store run, or a load of laundry, just let me know. Give William a hug and a high-five from Charlie : )

    Lots of love,

  4. i love you julie. love all of you. we're fighting with you. you're in our constant prayers. know that we are always always thinking about you.

  5. Julie, my name is Whitney Redfern and I live in Virginia where I just finished nursing school and am now studying to take the state boards. My mom (who lives in Chico and is the sister of Khristine Pettingill) gave me your blog address and I just finished reading every post. Five boys (not sure how many or if any girls), that's wondeful!! I'm hoping for six kids:) Big families are my favorite.

    Like many others have said, I will fast and pray for you and your sweet family. Thanks for blogging about you life. You're an inspiration.

  6. You guys are so amazing! Wish we were closer for hugs. Rae Mae asked me for hospital advice, but I forgot to tell her about scrapbooks! I put together a small packege of themed things to do a page or two and it really took our minds off things to create and remember stories. Sometimes I cried telling them because it made my heart hurt to remember Chey without problems but it was also fun to hear her memories of events. Let me know if he'd be interested in that because I'd love to send a care package! Also, there are some online ds game rentals that run like netflix. Game changes help too. Cd players are great too when they want to tune out but can't keep eyes alert enough to watch movies or play game.
    This too shall pass.... We pray for you nightly and Tristin remembers you in our food blessings! WE LOVE YOU!!!

  7. Ryan,Julie, William and family-

    I am a friend of "Aunt Hilary" and live in Chicago. She emailed a bunch of her friends today to pray for William and sent a link to this blog. I read it all and it really touched my heart. About 15 years ago my little sister had a doohickey too. Hers was in her neck and she had it when she was four and it came back when she was eight, just Williams age. She's 25 years old now and AMAZING. William and your entire family sound amazing too. All of you are in my thoughts and prayers.

    Its funny because 15 years ago before blogs and emails I remember reading bags of cards and letters from hundreds of people I didn't know but were praying for my family. It did make me feel better and give me some comfort. This is why I had to write you!


  8. Julie, I am so amazed that you have had the strength to blog on a subject that is so tender and tough. Thank you for keeping us informed...your strength has buoyed me and caused me to ignore the little irritations of daily life. Love you and Ryan and the boys.

  9. We are thinking and praying for you guys. I wish we were closer so we could help with your boys. We love you guys.


  10. Hi Julie,

    William is in every prayer at our house. Our hearts ache that he, and you, have to go through this. Thanks for telling us the good with the bad!!

    Erin Hakes told me that William is wondering about how to beat Lego Batman on his DS. Jacob tells me that you go on-line to find the answers to specific thing you can't get past. If you want me to find out where you go, I can. Also, I have 5 boys who are all proficient in Lego Batman and Lego Star Wars on the Wii, so if you think it would help, when William is ready, I can bring Adam (and maybe a brother) to come help him out/play with him.

    Love, Khristine