Our story begins in October of 2011. Our typical 6 year old little girl, India, began having severe headaches. Doctor visit after doctor visit we kept getting the same answer, Migraines. They were the worst thing I had ever experienced. The headache would start and then the vomiting, tylenol would not even relieve the pain she was going through. On October 25th of 2011 another trip to the ER, where we sat in the waiting room for 3hrs with my baby girl screaming in pain. Finally we get in back for the ER doc to say its a migraine and attempt to send me home with her. I absolutely refused and told him these are not migraines and he had to do something. Well he wouldn't, he was afraid a CAT scan would hurt her female parts, instead he ambulanced us to a hospital that would by 6am the 26th of October the Dr.'s are coming in telling me my little girl has a brain tumor and the cause of the headaches were hydrocephalus. By November 1st, 2011 my baby was in surgery having a craniotomy for the removal of a tumor called a craniopharyngioma. Though a benign tumor, the aftermath is the start of a whole new life for her and for us. I wasn't prepared for the chronic illnesses that followed. The loss of her pituitary gland which is panhypopituitary, hypothyroidism, Adrenal insufficiency, Hypothalmus obesity, and diabetes insipidus are only a few we deal with on a daily basis. Then we live with the fear that this tumor can come back at anytime. The MRI's that need to be done on a routine basis to see if this nasty little tumor is back.
I am India's mom and I live with fear, depression and anxiety everyday of my life. I can't imagine what my beautiful little girl lives with. Her whole life changed in a matter of 3 weeks. I do everything in my power to keep her happy and healthy, knowing the tables can turn at the drop of a hat.
I have attached pics of my beautiful girl beginning with October 25th, Nov 1st (right after surgery) and her today.
I am not sure just how many people know about Craniopharyngiomas as they are somewhat rare but this benign little tumor leaves a trail of chronic illness behind it and I was not prepared for the extent of the damage and knowing that this is just the beginning is terrifying. I live one day at a time and I am just thankful to have her with me today.