Sunday, October 9, 2011

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.

8 comments:

  1. I'm so sorry your family is going through this - when our baby son Vincent was diagnosed I felt like I was living a nightmare, it all felt so surreal. It still does, in a way. I wish I could wave a magic wand and get rid of all cancer, everywhere, especially for our kids. Praying for the 4 of you tonight!

    ReplyDelete
  2. Tory, I love you and Riker Star so much. I HATE that my hands are tied. I'm supposed to be "the person that can do anything"; why can't I change this for you? Why can't I help you? I'm so sorry, love. If I could kiss away her boo-boos, I would. If I could just hold your hand through this without posing a contamination threat to your baby, I would do that to. I wish I could even just lend you some strength.

    ReplyDelete
  3. Tory,

    Don't feel ashamed of feeling this way.Riker doesn't have the voice to say, this sucks for her,you,John and Valentine. Right now her body is just working hard to get that marrow to become part of her. This is the time when I felt the worse but each day it got a little better. You have many people out her listening to you and praying for Riker everyday. Riker and you are in my thoughts all the time.
    Renelle

    ReplyDelete
  4. God bless you and your family. I think about you often and pray for you and Riker. Hang in there for the day that you will see those 2 brave beautiful little girls playing and giggling together and this will all be a painful memory. Big virtual hugs to you all.
    Wendy

    ReplyDelete
  5. I know you can't see this now, but you are doing a great job. It is so difficult to see your child suffer, having to be fully present for one and not for the other, to have to be away from you husband who is without a doubt the person who lends you the most support.

    I, too, wish I could wish this all away. I don't do well with things I can't fix with my own hands.

    It's ok to not have strength every minute of the day, it is what makes you human. At the end of the day, ask yourself this "Did I do the best I could, under the circumstances?" I know you did.

    Sending you healing energy...

    ReplyDelete
  6. hang in there! the other commenters who said that you are her voice are right. She can't express herself in a way that others will understand so that falls to you.

    Hang in there! I read your blog everyday although I don't generally comment and you have so much strength to be guiding your family through this. Hang on! It's almost over.

    ReplyDelete
  7. Tory, I'm not sure if my name will appear as anonymous or not but it's Darlene. I have been following your blog but haven't commented before. I think about You, Jon and the girls all the time. As mother's we sacrifice and endure for our children. When they are upset or hurt we are so connected that we feel it, too. I'm so humbled by this video. It brought tears to my eyes and an overwhelming compassion for you. Your bravery and determination to stay strong for your daughter and your family makes me awe struck by you. I can't even imagine what you're all going through. I admire your courage and strength. You're an amazing person... don't forget that!

    ReplyDelete