Wednesday, April 24, 2013

April 17, 2013

April 17, 2013: Bennett’s Update: Over the course of the past 2 years, we have met with numerous doctors and had over 10 MRI’s monitoring the tumor. Bennett has been diagnosed with a Pineal Juvenile Pilocytic Astrocytoma; Stage 1. His tumor is located basically in the very middle of his brain, making any form of surgery extremely tricky. We initially had begun treatment at Texas Children’s Hospital, but then moved over to MD Anderson thinking that we were making the best decision for our little boy, but unfortunately, we were wrong. MD Anderson, though an AMAZING facility, was really not geared for the treatment of little children. Their approach to his tumor was to be aggressive wanting to go in and remove a portion of the tumor without trying any form of chemo. At this time, we just felt that moving him back to Texas Children’s was the best decision for us to make. Texas Children’s hospital felt that since the tumor had grown over the course of the past year by 35%, that we should start with chemo to try to stall the tumor long enough for him to grow to a safe age to begin either radiation, or have surgery. So, our current plan is to have another MRI on May 28th; and then shortly after that have a port put in, and then begin a Year and a half of Chemotherapy. The “cocktail” they have decided to administer to him is Carboplatin & Vincristine, on top of that he will continue to have MRI’s every 2 months. I will keep everyone updated on our treatment and let you know how he is doing. God give us strength, because we are really going to need it.

December 14, 2012

December 14, 2012: One year ago, we were faced with the worst day of our life. Bennett was diagnosed with Brain Cancer. Today he is a thriving, happy, and blossoming little boy with an endless imagination and a smile that never fades. We wanted to give everyone an update as to where we currently stand regarding his diagnosis after a year of monitoring it. We had an MRI on November 27, 2012. This MRI was relatively similar to the previous 4...all stating each time that his tumor has grown, minimally, but still, it has grown. After seeing these results, the doctors felt that they wanted to discuss his condition in a 12 nuerosurgeon roundtable. Normally, they spend 5 minutes on each case brought to the table. My nuerosurgeon, Dr. Sandberg called my yesterday evening and informed me that the spent 20 minutes discussing Bennett. They were all in agreeance that surgery is not an action take take at the moment. It will happen, just now is not the time. They were divided 50-50 on whether they want to start chemotherapy. I asked him what his vote was, and he said that he voted no, and that he felt we should wait and have at least 2 more MRI's over the next 6 months to make sure that it hasn't hit its peak and stabilized. If it hasn't at that point, then we would talk chemo. I agreed 100% with his opinion, so for now, we are waiting on treatment. Chemotherapy only has a 20% success rate on tumors like Bennett's, so even if we do it, it may not help at all, but I suppose that at this point we just have to be positive and think that since he got such a rare form of cancer (only 2 reported cases a year); that MAYBE he will be in that 20% that the chemo will work. I met with the nueroopthamologist. She examined Bennett's vision and said that everything looks great on that end...however; she watched his gaze and focal issues we have been seeing over the past few months; which have accelerated recently. She said that she has never seen anything like it, and felt that for sure it was attributed to his tumor, but could not say why. She told us that she would start doing research on it and see if she could find anything. She felt that it was a form of Congenital Ocular Motor Apraxia. Thought she could not be certain. She said that she would fully research it and be in contact. My thoughts were that since his tumor was so rare, apparently alot of the side effects they are seeing are equally rare. Hoping she finds something. Just thought that everyone would like to know where we stand. On December 14th, it will be exactly 1 year from the date that we were admitted with his Brain Cancer. Today I am thankful that we are home, happy, somewhat healthy, and loved by many. Thank you all for your unending support. ;)