We met with Dr. M yesterday to discuss our options for treatment. She conferred with other pediatric brain tumor oncologists on Thursday and brought back their thoughts to us. We have 3 options at this point.

• Proton beam or standard radiation – This was the option that all the doctors across the board agreed would give Gus the best shot at a cure. However, this option involves the WORST long term side effects. Gus is only 3 1/2 and his brain and spine are still in crucial development stages. This therapy will change him forever.
• Participation in a phase 1 study of a new drug LDE225. This drug is the future of cancer treatment. It deals with genetic targeting. There is a 25% chance that Gus has the genetic pathway for this drug to work. We won’t know if he has that pathway until we agree to participate in the trial. There are still side effects, but they are minimal compared to chemo and radiation.
• Chemotherapy involving 2 new drugs Gus has never had before- Irinotecan and Avastin. These drugs have proven effective, but the side effects are rough. The main effects of these drugs are GI related. They tend to cause A LOT of tummy problems. Other side effects are low counts, hair loss, nausea, weakness, mouth sores, and the list goes on.

So let’s start with our conversation with Dr. M about radiation. She feels that we should meet with the radiation oncologist to further discuss recommendations for treatment. We definitely agreed that we would like for the oncologist to go over Gus’s case and we would further like to discuss side effects. The main side effects that Dr. M was able to give us in radiating the brain were things like learning disorders and delayed mental development. Most of you that know Gus, know what an amazingly intelligent little guy he is and it would absolutely devastate us to take that away from him. Radiating the brain also limits actual head growth. Radiating the spine stops growth to the trunk of the body. Children with spinal radiation usually end up on growth hormone to keep their trunk growing with the rest of their body. However, their arms and legs usually end up longer. So then our question was have any of her patients received radiation at 3 1/2 and how did they turn out. She had one patient that had medulloblastoma and received radiation at 3 1/2 several years ago. He is in public school, in special needs classes, and maybe someday, he might be able to get a job. That’s when the tears came. Tony and I both looked at each other and said no. We did ask when she thought it would be a safe age to radiate with less developmental side effects. She said she thought 5 or 6 would be better. If we can keep the cancer at bay until then, we would be more open to the idea.

We then discussed the new research drug and its possibilities. Yes we would be entering the trial not knowing if he has the pathway for this drug, but there is still research to be done on how it can possibly treat the cancer even if he doesn’t have the pathway. If we decided to do this there would be an MRI after 2 months of treatment. If the cancer is stable or has shown signs of shrinkage then we will continue the treatment. If his cancer continues to spread, then we will be off the trial and we could move on to chemotherapy. We have an appointment with Dr. Aguilera tomorrow. She is one of the brain tumor oncologists running the pediatric trials for this drug in Atlanta. We will further discuss treatment, qualifications, testing, time frames, etc. and make our final decision.

These are extremely tough decisions to make for Gus and our family. There is no straightforward answer and the risk is so high. We do not judge ANY parents in their treatment decisions and we hope that all of you will respect our decisions as doing what is best for Gus, even if you don’t agree. Our main concern being to keep his quality of life as high as possible.

We so appreciate the outpouring of love and support you all have sent our way. I love reading your comments and guestbook posts. We had an overwhelming response to the requests for help with an ipad for Gus and thanks to all that offered help. Thanks to Tony’s co-worker Carol who has generously donated hers to our little man. Thanks to all of you who have sent out donations to our family. This is so greatly appreciated as we are constantly in financial stress. Thanks again to my gals Jane and Mary for helping with Audrey and Gus. We are still hoping to get down to Florida, but we are waiting to develop our plan of treatment before we make any further plans.

I will try to post tomorrow after our meeting with Dr. Aguilera, but it may not be until Thursday.

xoxox Erin

There isn’t much news, but I wanted to post what we do know. We took Gus in on Monday for a spinal tap and thankfully they were able to get what they needed. His blood work came back with a shockingly low platelet count and we have stopped his maintenance chemo. After further discussion with Dr. M we decided to keep him off this chemo as we will be starting a new treatment and his body needs to be clear of the old drugs before we can start a new regimen. Gus has been fighting a cold since Saturday. He developed a low grade fever on Sunday, but only for a few hours. He has a runny nose and has now developed a cough. It does not seem to be a bad cold as he has continued to want to be active and play.

We are taking every day as it comes and trying to keep the home front as peaceful and comfortable as possible. I feel like things really didn’t hit me until yesterday. I’ve been pretty calm about the situation and was starting to worry that I had become numb to it all. Then Dr. M called me yesterday to tell us that his spinal fluid came back positive. None of us were surprised by the news, but definitely disappointed. I am still calm, but now my heart is so heavy and I feel a deep sadness. This news made it real to me. Gus has relapsed. Even though we are weary, we will continue to do whatever it takes to fight this battle.

Dr. M is conferencing with the board of brain tumor doctors today about Gus’s case and we will be meeting with her on Monday to discuss our treatment options.

New treatment means lots of changes for our family. Gus will get sick not only with side effects from the new drugs, but his counts are going to drop and he will probably be sick a lot, which means possibly more stays at the hospital. Of course all of this not only takes a toll on Gus, but on Audrey too. She gets less of our attention, has to spend more time away from us, etc.

Our focus now is preparing for our upcoming trials and whatever the future brings our family. We are trying to pull funds together so we can drive down to Florida to visit family for a week or so to recharge. Once Gus starts his new treatment, we will be unable to travel and we really miss our family. We are also looking into trying to get an Ipad for Gus. He absolutely loves them and it would be a wonderful distraction for clinic and whatever else he has to endure.

We send out our thanks members of our “local support team” Mary Bradley, Jane Porter, Suzie Ruddle, and Deb Beacham. You are all amazing women and we are blessed to have you fighting in our corner. Thank you all for keeping our family close to your hearts and in your prayers. We love reading your kind words of support in the guestbook, so don’t forget to leave us a message.

I will post if there are any new updates this weekend.

xoxo Mama E