Thursday, November 18, 2010

More About MIBG Than Anyone Cares

Our Tuesday meeting in San Francisco was fantastic. Well, as fantastic as San Francisco can be from inside a medical building. Oodles of information was absorbed and we finally feel like we are moving forward into the next phase of treatment. Our main purpose of the visit was to learn about an additional treatment option with I-131- MIBG.
  • What is MIBG? Metaiodobenzylguanidine (because you were all dying to know). MIBG likes neuroblastoma cells and when infused into a patient, it goes through the body and attaches to any neuroblastoma.
  • How does this work to kill the cancer cells? Researchers have found that combining MIBG with radioactive iodine created a highly loaded radioactive weapon against neuroblastomas. The substance attaches to the cells and then destroys its DNA, killing it.
  • Is it a standard form of treatment? No. It has been used since the 1980s, but is still considered experimental because of the relatively small number of children that qualify as high-risk neuroblastoma patients and only 5-6 facilities in the United States have the required lead-lined room to administer the MIBG substance.
  • How does William's case fit into this study? William is a borderline qualifier. Usually qualifying patients have recurrent tumors or are resistant to treatment. William's tumors have been very responsive to treatment, but a small number of cancer cells still remain, keeping him from being labeled as "in remission."
  • How effective is the treatment? After decades of administering this therapy to patients, 35% respond positively, 1/3 remain stable with little or no change, 1/3 lose the battle.
  • How is the therapy administered? It is infused into his bloodstream over 2 hours. He then becomes highly radioactive, so much so that he must be isolated in a lead-lined room for several days until the radiation levels decrease to a level safe enough to be around other people.
  • How is that managed? William may suffer from boredom, but he may love the independence too. Because the nurses have several other patients and can't be overly-exposed, Ryan and I will be his primary caregivers and have to rotate turns in small minute intervals as we are each permitted only 30 minutes of direct contact for the first day. Each day, as his levels decrease, our direct contact time will slowly increase. He will likely return home after a week, but will have to remain 3-6 feet away from anyone for a period of time.
  • How do we feel about it? The side effects are minimal and not much different than what he already has to deal with after 8 rounds of intense chemotherapy. If this therapy is needed, it improves the likelihood of a successful stem cell transplant and decreases the likelihood that the tumors will return. We feel so fortunate to live close enough to a facility that provides this option so we can fight this battle with everything available.
  • What happens now? William was admitted today, Thursday, for his 8th round of chemo. He will finish on Monday night and hopefully be discharged on Tuesday. The week after Thanksgiving he will go through another full round of scans and tests to examine his progress and the existence of any cancer cells. If the scans are clean, no evidence of cancer, he will skip the MIBG treatment and proceed directly to his stem cell transplant on December 13th. If cancer cells are still present, we will proceed to UCSF on December 7th and the transplant will take place 6 weeks later. (It feels so good to spout out exact dates that are still weeks away!)
  • More Big News! We also had the opportunity to talk with one of our transplant doctors. We learned that 2 weeks ago, the findings were announced from a clinical trial in Europe for stem cell transplant of high-risk neuroblastoma. 500 patients were used in comparing the effectiveness of the high-dose chemotherapy administered just before transplant to kill the existing bone marrow. The results were staggeringly obvious in favor of a new chemo cocktail. It was 16% more effective overall: 14% less recurrent tumors, 2 % less toxicity. (That's high in this cancer world). The pediatric oncology field nationwide has already begun to implement this changed course of treatment. William will be approximately the 4th child at UCSF to receive this new, updated course of treatment.
  • Blessings. Clinical trials often take decades to complete. We were quite discouraged by the stubborn cells that have needed more rounds of chemo. However, if William had stayed on his course of treatment and not needed additional chemotherapy, he would currently be in the midst of his transplant, having already received the round of high-dose chemotherapy, the one with a chemo cocktail now deemed less-effective.
  • Sometimes in life we get to see the reasons why and sometimes we don't. For us, this is an obvious time when we feel the hand of God in our lives. I know He is aware of our sweet William and our family. I know he can direct our paths if we have the faith to allow him to work miracles. We still have many hurdles to cross and many months full of unexpected events, but we will make it out better, stronger, more faithful, and more aware of the tender mercies that God gives us to remind us that we are loved as individuals.


  1. Continuing to pray for you. Sounds like good news overall. I still can't imagine having to leave my child in a lead-lined room with very limited contact. It sure would be different from the past few months! Love you guys, and I hope the next round of chemo goes well.

  2. So glad that he qualifies for this new treatment. It truly is miraculous that you live close to a facility where it is available. Not a coincidence, I'm sure. Julie, I think of you and pray for you and your sweet William often.
    It seems that I am always strengthened by your faith and courage when I read your blog and yet, at the same time my heart hurts with yours for you and your precious little ones that you are going through this experience. I admire your openness and honesty.
    What would we do without the Gospel and the knowledge that we are cared for and loved individually by a loving Father in Heaven? How would we ever survive the turbulent times?
    We'll continue to pray for and think about you as you enter these next few weeks.
    Amy Bingham

  3. Julie,
    Thanks for the written details that couldn't possible be communicated to each person who wants to know AND quiet frankly understood without the opportunity to read it all slowly and multiple times! You are amazing! I love you and your sweet family.