Brain Tumor Clinic Appointment

Asher had an appointment at the Brain tumor clinic today. These appointments always last a couple of hours or so since most/all his doctors that are part of his treatment come in to see him.

Today it lasted twice as long.

First doc to come in was Dr Gross. She's the neurosurgeon that perfomed his surgery. She pretty well just observes him while he's running around the room. She thinks he looks great and really liked how well he was getting around and his constant blabbering.

Next doc was the psychologist. We discussed some behaviors. Asher off and on loves to scratch/pinch when he gets mad. And he can scratch. Hard. We think part of it is from frustration of not being able to communicate when he's upset. She basically said to continue doing what we are doing, which is time outs and hopefully he will get the message.

Dr McNall, a neurologist and a PA came in next. We love Dr McNall. Mostly we talked about the past 2 years, she told us she remembered his surgery well, she actually watched part of it. She mentioned to the PA that Asher was one of three kids, all three born a week apart and diagnosed within the same week. Brock, Asher and Cash. She told us that his MRI looked fine, we already knew that and then informed us that his next MRI will be in 4 months. If that scan is clear Asher is moving up to having an MRI every 6 months. YAY!! Great news : )

Last doc to come in was his endocrinologist. Again, we were shown charts of his weight and height. His weight gain is normal, again good news since he kind of jumped in weight for a little while in the past. His growth is starting to slow down. He is still in normal range but in the very low normal range of the chart. She explained to us that growth hormones are very sensitive and easily damaged during radiation. Most children that received brain radiation will have to take growth hormones sooner or later.  She said it's like a puzzle that you put together. The chart is one piece. Genetics is another and testing for growth hormones is the last piece. That's how they come up with the decision if a child needs growth hormones. Looking at his parents with my daughter being 5'6 and the person i don't mention on this blog being 6'1, Ashers potential growth should be around the same height. She's not sure he'll reach that on his own.

What does that mean for Asher?

She wants to set up another stimulation test like he had done for his cortisone levels but this time for growth hormones to see how much his body produces. If his body doesn't produce enough he will have to start taking growth hormones. I asked her if there was a certain age a child needs to be to take growth hormones and how it was administered. She said they can start at any age and the growth hormones would mean a shot.  A shot. Every. day. Till he reaches age 15 or so. 12 years of daily shots. Sigh. She did say it wasn't a huge needle like a vaccination or anything. Of course as soon as i got home i checked on youtube and found a couple of videos, it looks more like a pen with a short needle. Makes me feel a little better.

She said there wasn't a need to immediately start the shots, but the younger the patient the longer they have to get that child to their potential height. She also ordered for an x-ray to be taken of his wrist/hand to see how much room he had to grow. Guess now we just have to wait for them to set up the test and then wait for the results. Hate for him having to go thru this but we knew there was a high risk of him having to do this.

Next up were a couple of nurses to draw some blood, what for i'm not sure. I had to run down to the parking garage to get the carseat out of my truck and put in my daughters car.

I ended up having to leave at 430 before they took the x-ray to pick my husband up from work. 3 1/2 hours after getting there and they were still not done with him. Poor guy : (. I will update as soon as we know when they will do the testing for the growth hormones.