Our meeting with Dr. Aguilera last Wednesday went well. She brought the nurse practitioner running the Novartis Hedgehog trial with her to give us an idea of what we would be facing as far as time spent running labs and tests. Tony and I came prepared with LOTS of questions and Dr. Aguilera was impressed with our knowledge. Our discussion ran for about 2 hours and thanks to the ipad, Gus was very occupied.We learned that our participation in an official clinical trial would put us at some disadvantages. They will be using samples of his original tumor that was removed in June 2010 to test for the genetic pathway. Unfortunately, we will not have access to this information and probably will not get to know if he actually has the pathway.  Our access to results of tests etc. are limited. Honestly though it didn’t make much of a difference to our decision. Once all our questions were answered it was a pretty easy decision for us and we did not want to waste any time. We decided to enroll Gus in the clinical trial.

The side effects are minimal compared to our other choices. The main damaging effects are bone and muscle breakdown with prolonged use of the drug as well as permanent tooth damage. Since we were already at clinic and had a few hours left in the day, we got started on all the tests needed to start the trial. They had to take quite a bit of blood for lots of tests. Gus also had to get an EKG and x-rays of his right wrist and knee. Poor little guy had been poked and prodded quite a bit by the end of the day.

The trial also calls for dental x-rays taken by the dentist participating in the trial, Dr. Thomas. Fortunately, he works out of Scottish Rite. We weren’t sure if Gus was going to cooperate for the x-rays, so we were asked to hold his feeds in case sedation was required. After a quick exam and some conferring with Dr. Aguilera, Dr. Thomas agreed that we were going to have to sedate Gus in order to get good enough x-rays. He also recommended that since Gus was going under sedation that we get Gus’s teeth completely up to par. I thought that was a very good idea, might as well get a cleaning and maintenance out of the way. The day pretty much went downhill from there. I’ll spare you all the tedious details, but they did not take Gus back for sedation until 6 pm! He had not had any feeds or nutrition for almost 24 hours. Around 1 pm he was begging me for food and I was not about to get anything for myself to eat since he couldn’t. It was sooooo hard to keep it together. His sedation was general anesthesia which is very different from the usual propofol used for MRI sedations. It’s a harder recovery. By the time they brought him back it was after 7. He looked like he had been through the ringer and the tears welled up in my eyes. We’ve been through so much and we are pros at this kind of stuff, but it doesn’t ever get easier. Every procedure, every sedation, every treatment, every needle stick is hard to watch. I hate it. We got it all done though. Gus got a full exam and cleaning (no cavities hooray!), 5 sealants, x-rays, and they trimmed the skin off of 2 of his molars that have finally come in. He was so hungry when we left that he ate 4 bites of ice cream! That’s a big deal for Gus.

So we start the Novartis Hedgehog study on Thursday, which means that we are not going to be able to make it down to Florida to see our family.  The first month of this study requires that we have a lot of days in clinic for lab work, EKG’s, x-rays, etc. I’m not really comfortable leaving home after starting a new drug either. Gus could have an adverse side effect to the drug, its an unknown variable. Dr. Aguilera suggested we see how he does this first month and if all continues to go well, we can plan a trip for May.

Saturday we took the kids to Camp Sunshine’s Spring Fling and as expected we had a blast. We love Camp Sunshine! They offer so many activities for the kids and their families. They always give us something fun to look forward to and everyone that works there adores Gus and Audrey. They had an egg hunt, games, and lots of arts and crafts.

Finally, we are asking for lots and lots of prayers and love sent out to Tony’s mom, Martie. Last week she started to lose feeling in her legs and last night she was taken to the ER for problems breathing. Her CT scan this morning showed that her left lung has collapsed and she has been put on a Bi PAP machine to keep her oxygen levels up. We are afraid to admit it, but she doesn’t have much time left. Her battle with cancer is nearing its end. Tony feels its a matter of days. I am truly in disbelief at all we are facing in the days and weeks to come. Please keep Tony and his family in your prayers as well.

–Erin