Saturday, January 22, 2011

Pre-Transplant Test Results

The following are the numerous test results that filtered in this week:

Bone Marrow Biopsy and Aspirate

  • Right leg continues to be clear of any disease.
  • Left leg still has measurable disease at <3%. This is an improvement from the <5% before the MIBG therapy in December. Of course, we are saddened by this result as we had hoped for remission before proceeding to transplant. This result means there is a slightly higher chance his cancer could return or not be cured at all. But looking at the bigger picture, his bone marrow was 95% infected at diagnosis. He's made lots of progress! William has undergone the most aggressive forms of treatment available for neuroblastoma. We have no regrets as to the course of his treatment. This is just the way his body and the cancer have responded.
  • Continues to have increased mild hearing loss in the high pitch range.
  • He is still within the range of normal speech development. Thankfully, the new chemo regimen he will undergo before transplant does not have the toxicity to hearing that the former regimen has.
  • This will keep him out of military service!
Pulmonary Function Test
  • Some parts were normal. Others were not.
  • Some of his flows were measured at 50%. This is not too concerning given his age, what chemo he has tolerated, how he may have felt that day, inexperience with the test, but it is acceptable to proceed with transplant and will be monitored long term.
  • good
CT scan
  • Decreased number and size of the previously noted lesions in the liver.
  • The largest has decreased in size from 1.4 cm to 1 cm.
  • results still pending.

Ryan and I met with one of the transplant doctors to discuss at length the transplant process and the risks involved. It went well and we feel at peace, but it's very sobering when you must participate in a discussion about the realities of your child's health. There are risks and although many things are rare, they still happen at frequencies we wish didn't exist.

We've got a busy weekend getting everything prepared and spending some quality time with the boys. I'll post more details later of all the precautions and restrictions that go along with t he transplant.


  1. Well William, You may not qualify for the Military, but I think you have already fought quite a battle. You are the stuff Heros are made of. Keep fighting and keep smiling. You and your family are great!
    Sending Bahouth family love,

  2. Hey Julie -- this is Denise Reeder Daniel. Just got your parents' New Year's letter. My goodness what a journey you are on! I will include William in my fasting and prayers. Should you need to come to NY for medical treatments, we are here and would welcome you with open arms, soft beds, and good food. There's always a soft spot in my heart for the Bennions!

  3. love you...praying hard for william and all of you.

  4. What a lot to absorb-so many systems involved to make the body be well. William's body has been through a lot- and there will be more. It was created through the miracle of God, and will be cured in the same way. We are glad to be on this journey with you-and cant wait for the journey to CA so that we can actually be a part of the day to day with you. William-you are such a special boy to us!

  5. We love you and are thinking of you and praying for you all!!!

  6. Way to go William! We love you!
    Dave & Jennie

  7. You are all in my thoughts!! William, you are so brave! You have taught me much about being strong and keeping a positive outlook. You are my hero.
    Hugs and more hugs!

  8. Hoping and praying all goes well! William, you are amazing- a true inspiration to me. Good luck with the transplant and all the fun stuff that comes after it. Hugs and prayers!!!

  9. I had no idea what your little guy was going through until I read something on Kristen's blog and came to find yours. Our best wishes, prayers and thoughts are with your family. You have a beautiful, make that handsome, bunch of boys and hopefully his brothers will help William through his difficult times. - Sister Dalby