Saturday, June 12, 2010

Home Sweet Home

I typically try to suppress my inner Type A personality tendencies, but they were out in full force today: organizing and sanitizing. I bought plastic bins for medicines and medical supplies, a mortar and pestle for crushing pills, defrosted our deep freeze, sorted through everything we brought home from the hospital, organized our refrigerators and freezers (yes, those are plural) and gave my first sub cutaneous shot--with no tears!

William is doing great today! It's amazing what a little dose of home and home-cooked meals can do. He spent the day with us downstairs working on Legos at the kitchen table or laying on the couch taking a rest and watching a movie. He's gets fatigued quite easily, but is much happier. His sense of taste and smell are still altered, but he's eating. So we cook what he says he feels like. For instance, we fired up the BBQ for breakfast because he felt like a hot dog--grilled, not boiled and with Bertmans Ballpark mustard, the stuff Ryan grew up on and I ordered off the internet that they serve at Jacob's Field in Cleveland (for all you Indians fans). We made a fun memory! Lunch was the rest of his Jamba Juice from last night and dinner was lemon rice.

Ryan and I are exhausted. Physically, emotionally, the whole shebang. It still seems surreal what our life has become. I found myself caught off guard today when I went to the medical supply store to inquire about renting a wheelchair. The clerk asked, "Adult or child?" It hurt to say, "child." Then he asked, "What happened?" I replied," My son has cancer." Cancer. My son has cancer. Saying my son is undergoing chemotherapy sounds less severe, but cancer is the word that is shouting at me in my head. Note to self: work on the softer, gentler approach when talking to strangers.

Before checkout yesterday, our oncologist, Dr. Yim, told us that Dr. Shimada, THE neuroblastoma expert in the nation/world, at L.A. Children's Hospital reviewed the biopsy pathology and confirmed their findings as Stage IV Neuroblastoma (sub-type: stromal pore). She is very interested in and will be kept current on William's progress due to the inconsistent presentations of William's tumor, i.e. his age (over 5), lack of physical symptoms, lack of calcifications throughout the tumor and lack of elevated ferritin levels in his blood. We're taking that all as good news since we don't know any better.

It's good to be home.


  1. Welcome home, Julie! Hopefully you all get a bit of rest and rejuvenation being in your home together. Think of you so often and still praying for William's health and peace for all of you. Hugs!

  2. Julie, I am thinking about you guys, praying for your beautiful family. <3

  3. Well, your type "A" personality might come in very handy in this phase of your good to see you in church today. Sam even said that he saw William (with a mask). There's no place like home!

  4. Hi Murdocks - It is inspirational to read your blog. You are all amazing and William is so adorable in the pictures. So many prayers are being sent heaven bound for William and all of your family. Keep on posting and we will keep on praying!

    Love, Nancy Jones

  5. Welcome home everyone!! Soooo glad. It's amazing how "magic" home can be. Julie - I wouldn't worry about working on a softer stranger approach. People need to be reminded life is not all peaches and cream. I bet you'll be like me from now on and when you see those Childrens Miricle Network fundraisers around - they become different - almost faces - of someone you've met fighting something. Don't soften your approch. I am so glad you've found some peace. Lots of prayers are still being sent from our house & hearts.
    Love cousin J

  6. Yay for home, and an expert looking at your case!

  7. Yes, being home is good for the soul, and being around familiar people in a familiar setting is calming as well. I'm sure William is happy to be in HIS digs with HIS people and with HIS favorite foods available. Welcome home to you all!