Jun 23, 2012 - 5:58 am
I haven't posted on this board before. I've posted a lot....probably too much....on the brain cancer board over the last three years.
My now 28 y/o son is losing his battle with an anaplastic oligodendroglioma. A brain tumor, grade three. He was diagnosed on May 15th, 2009. On that date, his NO told him that the median life expectancy was three to five years. My son was determined to fight with every resource available. He underwent a craniotomy with 100% resection of all visible tumor, then he did radiation and chemo for six weeks, then he did a higher dose of chemo. This protocol kept the cancer at bay. David went back to college, received great grades, got his own apartment, started working for Apple, was playing basketball, golfing, riding his mountain mike, hanging out with family and friends---just living life fully. We all thought he had beat it---until July 3rd, 2011. He had two tonic clonic seizures and an MRI done at the ER showed "disease progression." We were absolutely devastated but determined to fight. It's been downhill ever since. I won't go into the details about insurance denials, trips to NIH for a clinical trial, a multitude of seizures, ambulance rides to the ER, hospital stays for blood clots, brain swelling, cellulitis....it's been hell.
So now our NO gives him four to six months. He's been living with us since December. He has declined dramatically since the first of the year. The chemo is really hard on him and may kill him before the cancer does. My heart is breaking and when I look at his face, my heart actually physically hurts. He looks dazed and scared, or totally disconnected and out of touch, like a mindless zombie. He was so sharp and quick and witty and funny and full of life....an athlete and always in top physical shape. Now he is in diapers, he can't feed himself, he can barely answer questions. But he still understands, still knows what is going on. And he still wants to do chemo, he still has a hope that maybe he will get better.
When he was diagnosed, if he could have seen then what would happen to him and how impacted he would be, he would have been so horrified and appalled. He never would have wanted to end up like this. Cancer is such a cruel, cruel disease. Brain cancer robs you of who you are as a person. It's so terrible.
I don't really know what I expect for emotional support here on this site. I guess I just need to vent. I know that all of you here are going through, or have gone through really tough times too. I just need to hear from someone else who is going through the same struggles and total heartache and knows what I am feeling.
Love and blessings,