Sunday, November 14, 2010

Long Break Brings Long Post

This past week had some highlights that are worth mentioning

  • Platelet transfusion. And perhaps I should add that a platelet transfusion is 30-60 minutes long. I'm still trying to figure out why we had to wait for over 4 hours in the hospital just to start the transfusion. I guess we still need to learn a little patience and flexibility. I do have increased gratitude for a friend that will keep my boys for 4 hours more than expected (along with her own four children)! Thank you! Thank you!
  • UCSF called to set up our consultation appointment for the MIBG therapy/treatment option. We head to San Francisco on Tuesday, the 16th.
  • Bone marrow biopsy. The oncologists and stem cell transplant team will be assessing this result very carefully to see how effective the new, additional chemotherapy was on eliminating the stubborn cancer cells from his left leg bone marrow. I suppose the MIBG therapy team at UCSF will also be very interested since William is one of very few children that qualify for their study.
  • Soren went to the clinic and hospital with me and William. For almost two weeks, Soren will randomly announce, "My tummy hurts. I think I'm going to throw up." We panic briefly, but nothing has come of it. We think it's linked with attention and how we respond to William when he's throwing up. I took him with us for the clinic visit and biopsy in the hospital so he can see where I go and what I do and what William has to do too. It's tricky trying to protect and care for all our children. I know we'll fail at some things, but I hope we'll succeed brilliantly with others, hopefully the ones that matter most.
  • William woke us up at 3 AM feeling sick and then threw up, barely making it to the bathroom. The nausea can sometimes be delayed after this past round of chemo, but he's been doing well and we were caught off guard.
  • He slept until 11:30 AM. We were so glad he got some needed rest, but wish he could rub a bit of that off on his brothers.
  • Clark woke us up at 3 AM to tell us William needed help and had just thrown up all over his bed. Clark is a tough boy, but he gets so worried and scared when William throws up. Clark said, "You need to take him back to the hospital, right?" I love how sweet Clark is, but it makes me so sad that he has to worry about some things that a 7 year old shouldn't worry about.
  • We all went to church together.
Two weeks ago our ward (church congregation) fasted specifically for William and two other children in our congregation, one also with cancer, and one needing a heart transplant. What is fasting? In The Church of Jesus Christ of Latter-day Saints, members are encouraged to fast whenever their faith needs special fortification and to fast regularly once each month. Typically, the first Sunday of each month is designated as fast Sunday. On that day, members who are physically able are encouraged to fast, pray, bear witness to the truthfulness of the gospel, and contribute a generous fast offering to help the poor. We go without eating or drinking for two consecutive meals. The offering should be at least equal to the value of the food that would have been eaten.

William was in the hospital that day, in the middle of a new and additional round of chemo. I want to express my gratitude for the fasting and many prayers offered in our behalf that day. I also want to share some of the blessings we feel we have received as a result of that fast.
  • The doctors offered us a possible additional treatment course that is only available in a couple places in the whole country. It has been effective in many cases in the past 10 years and due to our proximity to San Francisco, we now have more options.
  • We have felt added peace as we navigate a course of treatment that was not anticipated. It is still hard, but we feel confident that we will make the right choices when the choices present themselves.
  • William is eating more than he has the past 5 months. He has gained several pounds faster than he has previously. This is of great significance as he prepares for the stem cell transplant and needs the extra pounds to even tolerate the chemo that awaits him with the transplant process.
  • William was able to make it home for his birthday and stay home since then so we can be together as a family for a longer period of time than normal.
I am so grateful for the staggering amounts of kindness and support we have received from our families, our church, and our community. Many friends have welcomed our children into their homes at a moment's notice. Many, many meals have lightened our load after days spent in the clinic, at the hospital, or just trying to fight the fires at home that have been left unattended. Our home has been cleaned and our yard tidied. Emails, cards, and packages have yielded encouraging words. And countless prayers have been offered.

I am grateful for my faith that gives me daily strength. I am grateful for the knowledge of a loving Heavenly Father who has given us a plan and purpose for our lives. I am grateful for a Savior, Jesus Christ, who knows and understands the heartaches and sorrows, but also the joys. I am grateful for the tender mercies that confirm His love for me and my family.


  1. Thanks so much for sharing all of that. What great moments and thoughts. It is a great source of spititual growth to read your testimony and that is a service worth far more to me than you can know.


  2. Julie you really are amazing! You and your family are doing very difficult things and doing it well. Thanks for sharing your testimony through all of this - it strengthens my own. =)

  3. You really are amazing! I watched in awe years ago with how sweet and thoughtful you were with your sister and nothing as changed. You are a wonderful mom with a tender heart and tremendous testimony! Thanks for your example!

  4. I think that you are strengthening others when you think you need the most strength. You are amazing and I look forward to reading your posts. We are praying for Will's recovery and for his endurance to get through all that he is subjected to- you guys as well. Thinking of you often,
    Brady & Audrey Cox

  5. jules i love you so much. i read your posts and one thing that stikes me through all of the hard things you face is sleep deprivation!!! so i always pray that you'll have the endurance that you need to face this every day.
    love you tons and tons...