Dec 10, 2017 Latest post:
Jan 30, 2018
Well, let's start at the beginning. When our son was only six months old, both him and Nick were diagnosed with a genetic disorder, Neurofibromatosis type 1(NF1). NF1 basically causes benign tumors to grow all along their central nervous system and right under the skin called, neurofibromas. Typically, these tumors are no danger in sense of cancer, but more so in just making things difficult. Such as, growing in the brain, along the spinal cord, and other hard to reach areas for surgery. Rarely, they do turn into cancer. That's where this story for Nick begins.
Nick has a few neurofibromas on his skins as well as inside his body. He had one start growing on the back of his knee about a year and half ago. It was just a size of a pea. Honestly, we didn't even know it was there until one of Nick's NF Specialists pointed it out over a routine check up that he has to go to yearly. We thought nothing of it due to the simple fact that he didn't even know that it existed up until that point and it wasn't bothering him. Over the course of the last year, Nick has been diagnosed with Rheumatoid Arthritis along with Ankylosing Spondylitis. This is a more uncommon form of arthritis. He started to take Humira and then switched to Enbrel, because the Humira wasn't working. During the time of him taking Humira and Enbrel is when his neurofibroma grew behind his knee. In six months, it went from being about the size of a hazelnut to the size of a kiwi, and started to hurt Nick quite a bit. He decided it was time to talk to his NF specialist about it at the U of M, and they immediately started to do tests on it since it grew so fast.
Earlier this month (November), Nick was diagnosed with what we weren't really expecting to hear. He has a high-grade stage two malignant peripheral nerve sheath tumor or MPNST behind his knee know instead of just a neurofibroma. MPNST is a form of cancer of the connective tissue surrounding nerves. It is also classified as a sarcoma. MPNSTs contain about 5-10% of all soft tissue sarcomas. He also has a 86% chance that this type of cancer will happen again, but in a different type of his body. So Nick's battle is going to be a constant uphill battle.
He also has two more tumors that are causing concern to his team of doctors. One in his left lung, and another in his right lymph node in his groin. So far, they are just treating the one behind his left knee has it is the most concerning for them.
Nick will have to undergo five weeks of radiation, starting Monday, November 27th, and ending on December 30th. He will go for fifteen minutes, five days a week. After he completes his radiation, he will have the month of January off to let his body recover, and then they will begin the process of trying to remove the tumor in February. The biggest problem about this tumor is that it has attached itself to Nick's tibial nerve. He will have to lose his tibial nerve in order to get as much, if not all, of the tumor out. This means that Nick will lose his ability to move his foot in a walking motion, or a gas pedal pushing motion, and will not be able to move his toes anymore. He will have to wear a brace on his leg and foot for the rest of his life in order to walk. Honestly, this was better than the other choice that they also had originally talked about which was amputation from the knee down.
Right now we are in limbo in trying to make sure that we are prepared for this journey ahead. There are many thoughts, what ifs, what could bes, and everything in between running through out minds. All we ask is to keep out little family in your minds as we embark on another scary journey. Thank you.