The last 4 years have been amazing, in multiple ways...
On March 19, 2006, we were blessed with the addition of Isobelle into our family. Shortly after her birth, we began to notice brown patches on her skin. These cafe au lait spots were the first sign of a much larger problem.
When Isobelle failed to hit her milestones, we were referred to a neurologist. After hours of waiting to see the doctor, she informed us that our daughter had a rare condition, not Neurofibromatosis, and would be dead by the time she was three. She then ordered a MRI to confirm her diagnosis. On July 2, 2007, Izzy underwent her first MRI. Fortunately, the neurologist was wrong. An optic glioma (tumor on the optic nerve) was detected and then a diagnosis of Neurofibromatosis (NF) type 1 was confirmed.
Since that day, Isobelle has developed many other signs of NF: axillary freckling, lisch nodules (tumors of the iris), hypotonia, headaches, and gross motor delays.
At the beginning of this year, her eye doctor identified some optic palour of her left optic nerve. Although the optic glioma was not growing rapidly, this was evidence that it was beginning to damage her vision. After a few more consultations, I recieved a call that would change how we live our lives; Izzy needed to start chemotherapy.
On March 18th, 2009,the day before her 3rd birthday, Isobelle had surgery to place a port in her chest. Chemo was started that evening. Hours after she recieved her first round of chemo drugs, her little body began attacking her immune system. The neutrophils, her body's indication of her ability to fight an infection, were too low. She has since recieved a secondary diagnosis of chronic neutropenia. The good news, she should out grow this a few years after her chemo ends. The bad news, in order to keep her counts high enough to recieve her chemo, she had to have injections 3 times a week of neupogen. It burned, but she handled it so well. I did not.
Izzy has now completed chemo and we will continue to watch the optic glioma for growth. Unfortunately we now have 2 new tumors to watch; one on her brainstem and a plexiform tumor on her face. Some days it feels like we will never have a normal life. I want to complain about ear infections...We have tried to keep life normal, but normal is hard when you spend hours in a car to get to appointments and hours getting chemo each week.
We also struggle to make sure that her 4 year old brother, James, is not getting lost in everything that is going on. Our lives have been turned upside down. At times, I feel like I am drowning. The support we thought we would have, is not what we thought it would be, but we have had some unexpected help from friends. They have been a Godsend. Thank you...you know who you are.
Overall, Izzy has been phenominal. Adults can not do what she has done. She amazes us everyday.