Vacation is certainly over. Ty is suffering. He has been experiencing headaches for several weeks now, in fact I discussed it with his doctor at clinic two weeks ago, but it has been increasing in frequency and severity. I am so sad and so sorry for him. He cried so much today. Sometimes he just screams for me from across the room and there's nothing I can do. The only blessing in all of this is that they don't tend to last more than two minutes or so... but during those minutes time stands still.
I try so hard to heal him. I put my lips to his head and I imagine transferring all of his pain so I can suffer through the headache. It sounds silly, but I try to imagine sending healing energy and light from my forehead to his. I whisper to him and I kiss him over and over and over again as I run my fingers through his hair as it begins to sweat from the pain. I even starting softly singing the stupid song "pain, pain go away" instead of "rain, rain go away" because I thought it might make him smile. It actually did :) He thinks it's so funny if I pretend I don't know when I'm doing something wrong like that. It never fails. When Ty is sad, all it takes is a silly joke to turn him around and bring out his sparkling smile. His belly laughs are infectious.
I don't know what all of this means. I don't think his shunt is causing any of this pain, and I certainly don't think it's cancer. But I do think it's bullsh*t and I'm having a hard time expressing my feelings tonight. I have been depressed and it's starting to take a toll. His headaches bring down his energy and hinder his physical strength so any improvement in his arms and legs is at a standstill. I am anxious because I worry that every day without improvement is lost opportunity. I am making myself a little crazy.
Tomorrow we will be back at Sloan Kettering for his bi-weekly infusion for Avastin. I'm sure we will discuss his increased head pain in detail, and debate on whether or not a scan is warranted. We also have an appointment with a doctor of integrative medicine to discuss vitamins and supplements that we may be able to add to Ty's diet safely (he is a doctor at MSKCC so he is best suited to advise us on any contraindications while he is undergoing chemotherapy). Tomorrow Ty also begins another 21-day cycle of Cytoxin and Accutane. Two years this kid has been pumped with poison. I simply hate it.
But, on that same note it has been one whole year without evidence of disease. So... I guess I can shout that in the face of cancer... HA!!!!!!!!!!!!!
I should try and get some sleep. Or, at least lay in bed until tomorrow. Even after all this time, I spend my nights staring at his perfect sleeping face in complete and utter disbelief. This just can't be real. It just can't be happening to him... not to Ty.