Thursday, May 5, 2011

Gearing Up for the Next Phase

It feels like it should be the weekend because I'm ready to collapse. I been catching up on doctor appointments for my other children, continuing William's appts., and fielding lots of phone calls to keep the juggling act going and life running smoothly. Ryan has been traveling for work most of last week and this week and will continue as such for a bit. I really can't complain too much because we have been very fortunate that this past year has seen mild travel for him. (Yes, it was reasonably necessary that way). Thanks, coworkers, for sometimes filling in for him. Tonight when I picked him up from the airport, he said, "I am so tired. I think I hate hotel beds more than the hospital sleep chairs." I laughed and replied, "That's because you weren't medicated!" (Ambien is our hospital treat when possible).

William finally finished the round of antibiotics on Monday for his line infection. Thank you, Thank you, doctors, for letting us finish the last 7 days at home instead of in the usual hospital. I am more grateful than words can express. It looks like William is on track for beginning the next phase of treatment tomorrow (Friday). We almost had a small hiccup at the clinic today when the doctor found thrush in William's mouth. Thankfully the thrush and the medication to get rid of it don't interfere with the antibody therapy.

I spoke with UCSF this week on several occasions, but the most significant, noteworthy information is William's bone marrow still appears to be free of cancer cells, and the metastatic legions in his liver all appear to be cancer free. We officially heard the word REMISSION! The doctor referred to it as a "good remission". Now we hope to make it a "full remission" with the completion of all his treatments.

Next Phase:
  • Friday--begins subcutaneous shots, GMCSF. I'll administer one shot a day for three days before we head to SF. This is basically a "helper medicine". (I'm too tired to dig up the paperwork to go into more detail and most of you don't care anyway.)
  • Monday--William is admitted to UCSF to begin the antibody therapy. He'll receive a 10+ hour infusion each day for 4 days. It will be painful during the actual infusion and he'll have the magic PCA button to manage and maintain his comfort.
  • Friday--he'll head home and continue the shots for a week.
  • Somewhere in there he'll start taking the cis retinoic acid (similar to Accutane, but we're not treating acne here). This will give him all the same side effects as Accutane. He won't be sporting a healthy summer glow this summer.
  • Then he'll be admitted again (just overnight) to receive another "helper medicine"and then hopefully sent home to finish the several days of that medicine, but that will be pending the ability of our home hospital agency to provide a nurse to visit each day to assess William. (Oh, please let this work out so he won't have to spend the week in the hospital.)
  • Then we start the process all over again and continue for 5 cycles (1 cycle=approx. 1 month).


  1. Whoo-ee! The "R" word! Tell me, if you move each day half way to your destination, do you ever get there? :) Love, G'pa John

  2. wow. i'm so grateful to read that r word. and i'm exhausted for you julie and ryan...i'm praying all the time for you guys as well as william. HAPPY MOTHERS someone who does is so well. love you tons. so thankful to be your cousin.xoxo

  3. Julie,
    Ya, I love the sound or "good remission". I know the work and stress are not over, but I am glad your doctors lingo includes such happy words! Happy Mothers Day! Hugs, Jayme

  4. Happy Mother's Day Julie we continue to pray for William and you family everyday. We love you and thanks for your example of strength. What great news about the good remission!
    Michelle Call

  5. Happy Mother's Day to one amazing woman. Your boys looked to precious today in church. I will keep praying for William and your family.

  6. To a wonderful mom and daughter-in-law. Will and the boys are lucky to have you , as is Ryan. (Obviously, I think that you get what you give, cause Ryan's wonderful too.)

    Hope you had a good Mother's Day,and that the week ahead will bring you some good days too. Happy birthday this week. There's a card in the ail, and a e-mail gift certificate hopefully waiting for you. Hope it can add to your happy thoughts and dreams. No value is greater than Will's condition and recovery, but maybe this will buy some sanity and pampering for you! Love,
    R & C

  7. Julie,
    So happy to check your blog tonight and read that William continues to progress toward a cancer free life. Hurray! I don't know how you are managing all of this. Truly amazing! I think of you often and of your William. I wish I were closer to be able to help with the constant juggling act. Know that you are in our prayers. Hope the week goes well!
    Amy Bingham
    BTW, I have to say that I LOVE Ambien! Isn't it great when you need it?!

  8. Just checking and I hope William is doing as well as expected in his recovery. Wish you all the best.

    Officer Eric Baade (and Rocky)