Today marks 32 months since Greco was diagnosed with Diffuse Intrinsic Pontine Glioma. Even though he has lived much longer than we were told, Greco is not out of the woods. The last two MRI's have shown signs of swelling and increased blood flow. And although the size of the tumor has not increased, these changes indicate the tumor may be starting to grow again. Greco has LIVED for 32 months with DIPG. He has fought this monster for 32 months. He is still fighting. When you see him, you would never, ever know that he has been given this "death sentence". We have been blessed that he remains symptom free.
I go through these terrible phases of how I deal with this diagnosis. Some days are great and I keep a positive attitude and then there are days when I spend hours "frantically" scouring the Internet for answers. These ups and downs are totally my fault, but I am only human. I am guilty of being caught up in doubtful thoughts. I read about children that are also suffering with DIPG and start to feel sorry for us. Of course, all of these feelings are normal, but I don't want to feel this way. I want to be completely and totally at peace with this journey. But I am only human. I worry, I get angry, I get sad, I blame myself. I am human.
As you might recall, I have been sending Greco's records to different hospitals. I have been trying to get someone to tell me that Greco has been misdiagnosed. The latest reviews have come back. The hospital in Boston and the one in the UK, BOTH say the same thing. They both say what I have been hearing from our oncologist here. Greco has DIPG. And yes, scans appear to be indicating a relapse. Not the news I have been working so hard to hear. I can't just give up, sit back and let this happen. So once again, I am looking for ways to take care of my boy. After all, I am the one who feeds him. I must take responsibility and do something. So now here I am constantly scrutinizing what we eat, what we use to clean our home, what we use to wash our clothes, where our food comes from... It is enough to drive you mad.
Let go, let God....... Believe me, I want to. I mean to. I am only human and this is my baby. I want him to be well. I want to stop obsessing about this. For 32 months this is the first thing I think about when I get up and the last thing I think about before going to sleep, plus a thousand times in between. Most of it is prayers, indeed. Most of my thoughts are praising God for saving Greco. But inevitably, my thoughts go to non GMO food products or homemade laundry detergent.
I saw this shirt at wrestling practice last week. Winning isn't everything, it's the ONLY thing!! Greco is fighting cancer and he will win. I will do everything I can to help him defeat DIPG!!
Greco has lived for 32 months with DIPG, LIVEGRECO!!!