June 4th 2012 - Protocol M

Yesterday marks the start of the third protocol that Megan is going through. This protocol is easier in schedule, 2 times hospitalization, 3 days each ... if all goes well.

I hate the uncertainty of it ... It makes me very uncomfortable, makes me nervous.

This protocol has a drug - High Dose Methotrexate (MTX) administered intravenously into her for 24 hours. Then it is followed by continuous saline drips to help her body rid itself of this chemo drug, plus all the cells which are killed. This drug kills the cancer cells in her brains.

The doctor will tell me that there is a certain level that he is looking at when they test her urine after 48 hours - levels of the meds in her body cannot exceed 0.4. If it does, we will have to continue our stay. This happens to 20% of kids. If it does not, we will be given the last dose of Folinic acid to deal with the ulcers that can happen in her mouth.

And then there is the vomiting and the suppressed appetite and the fever, all probabilities which nobody has given a number to, they say each child is different ... each child is special.

It sounded so technical to me. It sounded so distant to me. It sounded so unreal too.

We are now staying in the same floor we did when we first found out more than 2 months ago. The same feeling is there - quiet, eerie, cold, unreal ... This time our room is smaller, although it is still a single room. This time, Megan cried after less than 24 hours in, she wants to go home, she does not like the feel of the room, the loneliness she feels from not seeing her brothers and her sofa and her Lucy ...

I want to go home too, I want a healthy child, I want the things that so many mothers take for granted - chatty, healthy, happy, naughty, rebellious, screaming children. I did not appreciate them enough before this hit me, I guess I always thought that it will not happen to me. I guess like so many mothers out there, I was too busy to stop and marvel them in their healthy state. I forget ...

As I write this, I am sitting beside Megan, she is sleeping. It has been more than an hour. This is her second nap today. She is tired. Doctor said it is not part of the side effects. Nurses said each child react differently. Mine is tired and her head feels warm. Part of it they said. The meds are working on her brains. So scary, so unbelievable, so needed ...