A Spoon Full Of Sugar Makes The Medicine Go Down...

Watching it come down through a translucent tube and disappear into the bandage into his arm doesn't seem so bad. Nothing seems bad really. Not the hole in his neck. Not the wire in his stomach. Being here too long does that to you. You accept the crazy as fact and it become okay because everyone else says so. The IV's are down from 10 to only 3. The sedatives are at the lowest dosage. Now as his nurse Dennis puts it, "The NMDA becomes more apparent.' He lays in bed making expressions, and doing things that are not typical Jason. As if my mental state was not fragile enough. I sit here, helplessly and watch. I watch all day, everyday, all night, every night and I look for an 'in" for when his eyes register with this world and he will give me a sign that he is back from wherever he goes so I can talk to him and get a reaction. I talk to him regardless but it is usually the same speech everyday.


"Jason it's mommy.'
"Jason you are sick right now but you are going to be okay. Don't be scared I am here with you.'
"Jason I love you."


I recite this all day long, because everyone says even when he looks like he is not with is, he can hear me. So just in case... I want him to know these things.


Retuximab starts today. The 2nd line of treatment they are so eager to give him. It is Chemo Therapy. There are symantix involved because it is not as aggressive as some Chemo therapies are but its a matter of Tomato - tomatoe that differentiate it. This can expedite his treatment. This could work wonders for him. This could give me everything I want.


This one that terrifies me. The one that will mess up other parts of him to give me his brain back. I keep thinking of the movie Contagion and how easy germs are transferred. I have wiped down his bed with alcohol and brought my own Swiffer and Swiffer sheets. I want his room to be a sterile environment so once this is in his system, the air purifier I bought from home can help me protect him from germs.


I know that's the 'crazy" talking. The paranoia. The part of me that is now "broken'. What's sad is that I KNOW that it is CRAZY to do what I am doing, but I feel like I HAVE TO DO IT ANYWAY. Because then I left no stone unturned, and I know I am doing EVERYTHING I possibly can. The medication will suppress his immune system making him more susceptible to infection. Everyone wants to visit - and again CONTAGION plays in my head. Every germ, every sneeze, every unwashed hand and I call downstairs to security to triple check my restriction list is still in place because I can't take chances. This is his life we are dealing with.


I can't lose my son to the common cold.
I can't lose my son - period.