October 8, 2011 - Day 7

4 months, 3 days since diagnosis
day #17 of current hospital stay

It feels like we've been in this small room for a lifetime. It feels like I'll never see my family again, never get to go home, and even worse, never get out and live a normal life again. I'm feeling down and sorry for myself again. I'm feeling sad and angry and not at all grateful for the hand I have been dealt. Selfishly, that's only what I'm feeling about me. Do I feel the same for Riker? Sure. Of course I do. But I also feel that way about me.

I keep waiting for that magic moment where I'll adjust and this will become normal. It has to, eventually. Then, I can step back and appreciate this moment for what it is. Again, I can appreciate that the situation could always be worse and that I really am blessed. Right now, I don't see how this could ever feel normal or ok... I'm simply crawling out of my skin with loneliness and helplessness.

Again, Riker slept all day today. She wasn't difficult to rouse, per say, however, she was absolutely wiped and did not have any "wakeful time" today. She has not pooped in almost a week and she's clearly uncomfortable. The morphine is keeping the pain at bay but she's still pretty miserable. This morning she threw up and there was blood mixed with mucus and several oral meds she'd been given recently. The mouth sores are more obvious and clearly painful. Tonight she has a fever that's been as high as 102.6.

We've backed off on the morphine so she'll be less sleepy and constipated. We've given her meds in hopes she'll poop soon and that should alleviate some of her discomfort. She's been given Tylenol and the fever's come down. I'm assured all this is normal and no need for concern. She's been taken to the brink of death for this transplant and now we're keeping her alive while we wait for Valentine's magic seeds to plant in Riker's bones. All we can do is treat each obstacle as it happens and try to keep her comfortable.

There is nothing to keep mom comfortable, though. There is no drug or word that can keep me from feeling everything she feels. Here I am, helplessly watching my baby struggle for her life. Here I am, helplessly watching my husband and other baby live their lives back at home without me. Not that I'm implying they don't miss me - I just miss them terribly.

For now, I just keep trying to look at only the next moment or day... I try not to think of the months and months ahead of me yet. I try not to let the hopeless thoughts creep in. I try to remember why I am grateful for today and grateful for all that I do have. I'm trying to find that silver lining and waiting for the moment when the clouds part and the sun creeps back in.

Rarely do I share pictures or videos of the truly tough times. Today, I will share a glimpse into our lives here at Children's Hospital Boston and what Riker and I are enduring.