Friday, March 23, 2012

More Scan Results and What He Taught Me

The Donut Dash is coming…tomorrow, Sat. March 24th! It’s not to late to sign up—just show up to register from 7:30-8:15am (see for details). It’s not too late to donate either.


Last week William had additional scans of his leg and groin due to sudden increased pain and visible swelling in the affected areas. Side note: Although it was not to be my career or degree path, my college human anatomy class has proven invaluable. Highly recommended to those with the opportunity!

  • 3 skeletal tumors in the tibia (the bigger bone between ankle and knee)
    • top of the tibia just below the knee measuring 6-7 mm.
    • inside the bone running longitudinal (lengthwise) measuring13 cm in craniocaudal dimension (how's that for a vocabulary booster: meaning in the direction the x-ray beam travels during the scan. i.e., top to bottom).
    • at the metaphysis (wider part at the bottom of the bone).
  • Fibula fracture due to stress from rapidly growing tumor (smaller bone between ankle and knee).
  • Tumor 10cm in length inside the fibula bone (just like the tibia--craniocaudal).
  • Soft tissue tumor extending away from the body along the fibula measuring 2.5 x 3.0 cm. This part is visible and looks like a giant goose egg on the side of his leg. It is growing fast enough that we didn't notice it during a Friday appoinment, but on Monday it was significant.
  • Probable, but not definitive tumor growth in the marrow of the talus (the big bone on the top of the foot just under the tibia.)
  • 3 enlarged, metastatic (tumor spreading) lymph nodes in the left groin. The largest measuring 2.1 x 2.0 x 2.0 cm. The other two measuring 1.5 x 1.6 x 2.1 cm and 1.5 x 1.5 1.3 cm.

Plan of action:
  • Add radiation therapy of the groin, tibia, and fibula areas.
  • Continue with plan to radiate liver.
  • Leave the chest and abdomen tumors alone because they remain stable.
  • Non-weight bearing status to prevent further fractures and bone damage. He’s restricted to his wheelchair and walker. But he cheats a lot!
Radiation has begun. He'll have 12 treatments over the next 2.5 weeks. The best part is the 7:10 am appointment time!

Obviously, this wasn’t the news we wanted to hear. It’s horrible seeing your child in pain and not be able to do anything to cure it. A colorful array of pain meds are at our disposal and are being dispensed---just to William. William rarely ever complains. Really. Rarely. But the crumminess of his life set in with these last results and he just cried and cried that night. We did too. I held him in my arms and Ryan and I, tears streaming, listened to him ask why he can’t just be a normal boy. “Why can’t I run around the playground and kick a ball like normal kids? Why can’t I be a missionary, a daddy, an engineer…like normal boys? Why can’t I kick a ball farther than Soren (5 year old brother) because I used to be the best kicker?” We ask those questions too and can’t give him the answers that make complete sense to a 10 year old. We hold him, sympathize with him, and tell him we love him over and over and over again.

What he taught me in that moment was powerful.

I explained to him that these are questions he can ask his Heavenly Father in his prayers. The answers won’t usually come as spoken words, but as feeling in his heart and impressions in his mind. I asked if he would like to pray and if he would like me or him to say it. He asked to pray himself. With tender emotion he prayed out loud with sincerity and pleaded with his Heavenly Father that he may have peace and comfort and that he would be able to have the strength to handle everything. Not once did he ask why or ask to be healed. He just asked for strength, peace, and comfort. I can't help but believe the strong, sweet spirit inside him understands and accepts God's will better than we do. In that moment, he taught me all we need is continued strength to endure and the peace and comfort that comes from our faith in God's plan and faith in our efforts that we have done all that we can.


  1. I am inspired by William's faith Julie. It brought me to tears. You all continue to be in my prayers.

    xo m.e.

  2. What a grown up spirit inside of our boy. He knows Heavenly Father wil comfort him because you and Ryan have dome such a wonderful job loving him through all this. He is more than a normal boy, he is so special. May your donut dash be sweet. XOXO

  3. Julie - you have always amazed me! Your testimony, strength, diligence. But right now as I sit here bawling I am overcome with the spirit - you are an amazing parent and example to your son! Thank you for sharing your journey and the experiences that you have with William. Please know you are in my thoughts and prayers often! I love you! Stephanie

  4. Tell William he is an amazingly wonderful boy, with amazingly loving and strong parents! We love you guys! My heart aches for him in his pleas to just be a normal kid.

  5. About all I can say is "Wow". What a precious boy you have. When can I take Soren (or do anything else)?? xoxo Anne

  6. Julie, I can't imagine the pain you, William or Ryan are experiencing but I am praying for you in every prayer that you will have those blessings of peace, comfort, faith, hope, and love that HF has for all of you. Love you.

  7. Beautiful! With tears in my eyes and feelings and impressions in my heart and mind, I can't help but to receive a lesson from William as well! Prayers of peace and comfort, coupled with good days for Will everyday. Loves to you all!

  8. I'm so sorry that the disease is progressing at that rate. Thank you for sharing such a tender experience in writing, so that we can also learn from William's astoundingly faithful submission to Heavenly Father's will. He is simply amazing. Know that you are always in our prayers.

  9. Oh my dear Julie and Ryan, We love you and we sure love William. I was just reading 3 Nephi 17 last night and I was touched so much by the love the Savior showed, especially for the children. I know that He is aware of William and that He will answer those heartfelt prayers. We're thinking of you and praying for you.

  10. Love to William and you all. Thanks so much for sharing this. I continue to pray everyday for you guys.

  11. Julie, Ryan, William and boys: The trials and challenges that come along in our lives are so often never what we thought we would be dealt. There are not words enough to tell you what an inspiration your family has been to me, and to my family. As you know this life is a test and all that is expected of us is to bear it well and endure to the end and to help lift the burdens of others. You are all doing that, and I am sure our Father is pleased with your efforts. William, you are my hero! Julie and Ryan, I stand in awe of your strength and faith. I love you.

  12. We love you all so much Julie. We pray for William and for you each to have the strength and peace and comfort you need to continue in faith. Hugs to you.
    Love, Becca, Mike, and family

  13. What a remarkable spirit he has. I've been thinking of you all, and I put your names on the temple prayer roll today here in San Antonio. Many, many people are praying for your family.

  14. Julie, thank you for sharing your experiences. I am strengthened by the courage you and Ryan have in the face of this terrible adversity. Thank you, William, for helping remind me (an old 38 year-old woman) that we need to pray for peace and comfort to accept our challenges. Some men get the chance to become missionaries, daddies and engineers, but they may never learn such a valuable lesson their entire lives.

  15. Julie, You queen! You are something so special to all of us who love you. This journey has taught us all so much because you have been willing to share it with us. Oscar Wilde said something that explains so well the desire that loved ones have to share in the struggles of the ones they love. He wrote:
    If a friend of mine – gave a feast, and did not invite me to it, I should not mind a bit … but if … a friend of mine had a sorrow and refused to allow me to share it, I should feel it most bitterly. If he shut the doors of the house of mourning against me, I would move back again and again and beg to be admitted, so that I might share in what I was entitled to share. If he thought me unworthy, unfit to weep with him, I should feel it as the most poignant humiliation, as the most terrible moment for which disgrace could be inflicted on me … he who can look on the loveliness of the world and share its sorrow, and realize something of the wonder of both is in immediate contact with divine things, and has got as near to God’s secret as anyone can get.

    You have been so generous to share this experience with us. You have done it so well, Julie. You have a wonderful "voice" in your writing. It is so genuine. I was telling Uncle Richard today that your style is so interesting because it is not at all maudlin or seeking sympathy or is perfect and it has taught us both so much. We love you and Ryan and your boys and think that our visit to Katie's wedding was a gift in so many ways, but especially for us to see you and the boys. We treasure that.

  16. We love you and are amazed at your strength and courage. We admire you and think of you and pray for you always. Thank you for sharing your special moments with us.
    Nicole, Peter and Family

  17. My heart is breaking for you and the tears are flowing. William is such an amazing missionary now. A true Stripling Warrior and his testimony, spirit and faith are an example to all. Julie & Ryan, you are amazing parents and I love you guys so much and I am in constant awe of your strength, courage, example & faith. You are are struggling with similar health heartache and trials. constantly in our prayers & mind as are so many others who Although none are exempt from trials, you have proven that through submission to God's will, faith and perserverance, that love can prevail and peace can reside in uncertainty. Families are Forever and for this I'm grateful. Love that you are still working on William's bucket list! To life!

  18. Dearest Julie, Ryan and Family,

    We love you all so much and pray for you everyday. We stand amazed at your strength and amazing perspective. We would stand amazed even if you weren't so strong. I can't even imagine the pain you must be feeling. Thank you so much for sharing with us and for your love and generosity to us personally- our summer in Folsom is one of our cherished family memories. You will always have a special place in our hearts.

    All our love,
    John, Wendy and family