Pain, pain go away

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.