Yesterday was not filled with good news. As anyone who deals with Tuberous Sclerosis (TSC) knows, you have to celebrate the times when things are going well and progress is being made because you just never know what's around the next corner or when when you'll walk into a brick wall.
We have known for three years that Evan had a small tumor on his left kidney. It was diagnosed as an angiomyolipoma (AML) which is usually benign and not uncommon for TSC patients to develop. It was the kidney involvement that confirmed a TSC diagnosis years ago. The AML was small and these tumors don't usually grow in young children so our plan was to monitor it and not worry too much, especially since Evan had three brain tumors that were causing much more concern at the time.
So yesterday we took Evan for a follow-up renal ultrasound and we approached the appointment with the the expectation that this would be a routine check-up and no real news or changes. Enter the brick wall...
Apparently the tumor has basically tripled in size, at least in length and is 2.3 cm at the longest measurement. This is clearly not good news but a growing benign tumor is a totally different issue that a growing malignant tumor and at this size it is still considered small. According to what I've read, in TSC patients, AMLs become a concern when they reach 4 cm because the wall of the tumor becomes thinner and weaker and the chance of rupture increases. When the tumors get to this size the consideration is embolization (basically tying off the tumor where it connects to an artery so it will stop growing) or for more advanced cases removing the tumor surgically. So the bottom line is that Evan is not in an emergency situation, but will need to have his kidneys monitored closely. We have an appointment with a pediactric nephrologist in a few weeks so we are eager to hear his suggestion for a game plan and possible outcomes.
At the moment we have more questions than answers but feel confident that the increase in size has been identified early and we're optimistic since the tumor is still small.
Evan was a champ through the appointment and delighted in showing the technician the temporary tattoo on his stomach!
July 13, 2009
Epilepsy Action in Australia contacted us about writing a story about our family and here is the link to it...
They were interested in our family story and how it led to the creation of SeizureTracker.com. We already had people using the site in Australia but we're definitely seeing an increase now. I'm so glad we are slowly getting the site to people who will find it helpful!