Saturday, June 28, 2014

Mr. Billy Rubin is Not My Friend

We saw the doc again on Wednesday and things have become even more serious.  My liver is under extreme stress.  We learned that some measure of your liver function called bilirubin is now playing an important part in my situation.  The more stressed your liver is, the higher your bilirubin gets.  Once your bilirubin gets to a certain number, they can't give you anymore chemo, as your liver can't handle it. Unfortunately we are getting very close to that number.  I do not like that Mr. Billy Rubin.

The original plan was that I would get a second dose of my last chemo next Wed, but the doc was afraid to wait that long, so he gave me a half dose of the chemo that was working well for me a few months ago before we took a break to try the clinical trial.  We see the doc again this Wed to see if there's any chance that was enough med to just buy us more time to take more chemo.

It's been hard for us to absorb all this, focus on one day at a time, and hold on to hope.  Yesterday we had the conversation with Rory about what happens if this medicine doesn't work.  We talked to her about the village of people who love her and are here for her to talk to.  Most of all, we told her that her job right now is to keep living the life of an 8-year-old! Go swimming, play with friends, go to camp, etc.  We're looking into professional resources for all of us, as well.

I'm home bound and I sleep a lot but otherwise meds are keeping me feeling decent. My parents are coming to town today and more family is visiting through the week.

A favor to ask... My wonderful husband is AWFUL at asking for help and is working hard to do everything himself.  If you are going to Target, or can have Ro over for a play date, or want to bring a meal, please text him and just ask when you can do these things.  If you want to come visit and maybe vacuum while you're here, I'm ok with that.  If you can take Maybe out for a 30 minute walk. If you are willing to babysit me so Jason can get out of the house. Any of these things would be helpful.  If you need his cell, text me.

I'll keep you all posted after Wednesday's appt.  Hugs and love to all!

Jill

7 comments:

  1. Sending virtual hugs with a huge lump in my throat and tears in my eyes. May Wednesday's appointment bring what you are wishing for. Life is so unfair.

    ReplyDelete
  2. Jill you and Rori and Jason have my prayers. I don't know what to say besides for that. Sometimes words are inadequate for expressing our feelings

    ReplyDelete
  3. Sending prayers and keeping your sweet family close to my heart. I hope that Wednesday's appointment brings some good news!

    ReplyDelete
  4. Up for a cleaning-able, shopping-able, joke telling-able visitor over the lunch hour any day this week? If you are, send me a FB message or an email and I'll be there with bells on. - Shannon Grass

    ReplyDelete
  5. Lets hear some good news on Wednesday. Praying that your liver recovers and that treatment may resume. Praying for patience and tranquility for you and your family. Trust and Believe !!! -- Maria

    ReplyDelete
  6. Prayers for you, Jason and Rory. I will definitely be thinking about you all on Wednesday and hoping for the best.

    ReplyDelete
  7. Hope and pray things went better today. Love you all

    ReplyDelete