Friday, August 6, 2010

Keeping Things in Check (more or less)

We had another clinic visit on Thursday and William's numbers are great. His ANC is high which means his immune system is in great shape at the moment and he can live a somewhat normal life for the next few days. His energy level continues to improve due to the I.V. nutrition and the mass of commotion that now fills the house, but I continue to worry because he is not consuming adequate amounts by mouth on his own to gain weight. I even wonder if he's eating enough to maintain his current weight. His sense of taste and smell have been altered from the chemo which makes him fairly picky, but sometimes I wonder if things really don't sound good to him or if he's just learned how to work the system (me)! So once again I walk the fine line of loving mom and tough mom and calling his bluff.

William is currently 26 kg/57.2 lbs. Dr. Yim wants to keep him on I.V. nutrition for a while because he wants William to be over 30 kg/66 lbs for the bone marrow transplant. That's a few pounds more than he had when we started this journey, but he needs the fat on his body in order to tolerate the high dose chemotherapy round that is administered just before the transplant.

Ryan had his not-so-annual physical exam yesterday and is physically healthy, but talked at length with the doctor about William and our family situation. He reminded us about the importance of sleep, a healthy diet, exercise, and continuing recreation (not putting off having fun as a family until life is less stressful). Good advice. We feel like we are doing well, but also need to improve in all areas. I improved my mood today with a long overdue haircut---nothing drastic like I typically do after growing it out this long since I still have many hospital stays ahead with reduced personal grooming standards. Gotta love a pony tail (or not)! Thanks, Emily! I love it!

We have enjoyed having Ryan's parents this week to lighten our load and ease the transition from vacation mode. Ryan's dad has been hard at work doing yard projects and Ryan's mom has kept the boys busy and entertained. Thank you! Thank you! We are so grateful for the enormous support from our families. My brother and sister will arrive tomorrow and spend the week helping us while William is in the hospital for chemo again. The following week another one of my sisters will fly out to help during the week William usually ends up in the hospital for an unscheduled stay. Our burdens are truly lightened by the many sacrifices so many have made to help us. A huge thank you to the many people who have worked in our yard, cleaned our home, washed our laundry, left food, flowers, cards, on our doorstep, etc. We are so grateful for the outpouring of love and continued thoughtful notions. I can't possibly keep up with thank you notes, but please know how much we appreciate everything and draw strength from all of you as well.


  1. That all makes me cry. I am so thankful for all of the thoughtful and hugely supportive acts from Maidy, Chad, your sibs and countless neighbors, friends, and probably a few loving strangers to you too. I love you Julie and Ryan and keep you in my heart and prayers everyday. It was a real treat to know your little boys and play hard together recently. My boys have asked daily if they can play with their California cousins since we got home. Love, Rach

  2. i'm so grateful you have so many around you helping bear your burden. so glad you'll have your brother and sister with you this week!! love you all so much!

  3. Julie, you are truly an amazing woman! I had a chance to hug Chad and Remae a few weeks ago and she speaks such words of love and praise for you! Hang in there! Ryan's doctor spoke important words...recharge yourselves so you can be there for your family.

    When my husband lost his leg 12 years ago, I had this quote on my fridge and read it daily for about 5 years. What you are going through is SOOO much more than what we went through, but President Hinckley's comforting words somehow helped me through each day during some rough times.

    "It isn’t as bad as you sometimes think it is. It all works out. Don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us. … If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers."

    Priesthood Session of Jordan Utah South Regional Conference, March 1, 1997

  4. Julie, you don't know me but I've been following this blog for a while now. William's former teacher is my husband's aunt and she told us about you guys because #1 this blog is amazing and #2 you're Mormon and so are we! Thank you for sharing your faith and experiences with us. My husband and I fasted for William and your family today. We pray for you and love you even though we've never met.

  5. It was great to see you all in church yesterday. We pray for you on a regular basis. Much love,
    Carmen & Co.