|Clinic 8 waiting room at Children's Hospital|
Today we made the short trip to Clinic 8 at Children's Hospital to meet with Dr. Reddy, pediatric oncologist. We met with her in March, and the recommendation then was not to make any decisions about chemo and to wait until the June 2014 MRI. As a reminder, Philip does not have cancer. He does have a large nodular plexiform tumor in his neck that is displacing his carotid arteries and has begun to push on his airway. It fully involves many important nerves so the idea of surgically removing it is not up for discussion, unless it becomes a life threatening situation. There is always the 10-15% chance that his tumor could turn malignant. Surgery is our last resort due to the significant risks and permanent life altering nerve damage that would result. Because of the shape of the tumor, its growth has been measured in volume and has been slow and steady.
There was a growth in volume from January 2014 to June 2014. Over all, the tumor appears to have gone from 80ml to almost 160 ml over 18 months of MRI imaging. Philip has no pain and no difficulty breathing or swallowing, although mom (Renie) notices more heavy breathing lately (possibly her paranoia or what she calls intense concern). Our concern is that we will watch this slow tumor growth take over everything in his neck and be left with no choice but to operate.
The main problem with chemo options is that there is a low success rate of any available drugs working due to the slow growth of neurofibroma tumors. They just behave differently than cancer and other malignant tumors. The same drugs will not work on NF tumors. We understand that the success rate of the drugs in use today for NF tumors is around 20%. The reason we would take such a low percentage chance is that this is our only option. Philip does not qualify to participate in one of the latest clinical trials that offers the latest chance of hope until he is sixteen. He turns nine next week. And, as with any clinical trial, there is no evidence that this latest trial is the miracle drug over 2 million people worldwide affected by NF desperately need.
The drug we are considering is called Gleevec. It is a twice a day oral chemo drug with relatively low side effects. Dr. Korf will consult with Dr. Reddy before our appointment with him on July 24th to make sure that our medical team agrees on this step in Philip's NF journey. We want to make sure this decision does not remove us from any future clinical trials in progress that may offer more hope. There are no easy answers.
There is no clear path. We do not feel confident in this decision. However, we feel even less confident doing nothing.