Thursday, September 26, 2013 We have had a mandatory rest period from any treatment after William’s last trial and then the G-tube placement. With the G-tube, we had to wait until it healed enough to restart chemo to avoid poor healing or infection. He received the green light yesterday to move forward with the next round of therapy as far as surgery is concerned. Now the tough decisions on how to proceed. On our trip to Cincinnati, we had genetic testing done on William’s tumor to look for any clue for a specific treatment unique to him. The results did show a specific genetic marker called Anaplastic Lymphoma Kinase (ALK). Luckily there is a trial medicine called crizotinib which specifically blocks this pathway and potentially will decrease the growth of his tumor. The study is only open at larger centers and not available here in Savannah. We have contacted several of the specialist and they feel with this genetic information the crizotinib study is the best fit for him. Now comes getting into the study. The study is still in progress but not accepting new patients at this time. The primary investigator running the study did say it should open up again in a few days. The doctors in Atlanta are watching for the opening and will try to get William’s name on the list. We just aren’t sure when the study will be available and if their team will be fast enough to grab the spot. I certainly understand the need to get good study results and potentially help other children, but time is of the essence to get William back into a trial. We want to get him restarted on therapy as soon as possible and to make sure it is the best fit for him. There are many things in the works that have not fallen into place yet. For instance we could start on an alternative chemo regimen as an interim therapy, but this could potentially prevent him from being in the crizotinib trial. Alternatively we cannot sit around and do nothing waiting on a spot to open up either. In the past 2-3 days we have noticed the pain returning for William and feel the pressure to restart some treatment to bring him relief. Our goal is to get him a therapy that will hold this tumor at bay. We have been told over and over again there is not a cure for his neuroblastoma. Our prayers are for comfort and a response to a therapy which will provide as much time with William as possible and continue to hope and pray that a cure is found in the meantime.
Posted on: Thu, 26 Sep 2013 16:44:09 +0000
Trending Topics
Recently Viewed Topics
© 2015