Thursday, September 20, 2012


I can't bare to post a sad picture right now. So here is a yummy ice cream picture from one month ago.
I have greatly neglected this blog, as I have been posting on Facebook more recently. Blame it on the purchase of our iPad, where blogspot runs incredibly slow and where Facebook is fast!

We finished Case's fifth and final round of high-risk protocol chemo two weeks ago. Last week we went back into the hospital for another fever, this one to the tune of 104.1 degrees in the middle of the night.  That crazy Basillus Cerious bacteria was back. It had gone dormant in his port line and then decided to rear its ugly head again.  So his new double lumen port he got placed in NYC was removed last week.  

The doctors wanted to give his body a week to clear the bacteria before they placed a new line. So he had an IV in his little foot for two days and was stuck like a pincushion.  Seriously, it was awful. Then he got a PICC line placed in his upper arm, which he still has. We don't like it as parents, and neither does Case.  And apparently one of the lines isn't working now. Don't know what's wrong. So 
we are working on having a double lumen Broviac placed tomorrow. That means surgery again.

But that's the least of it. I was planning on posting all about our San Francisco trip, which was supposed to commence Saturday.  Notice the past-tense used of "supposed to"?  Case had a CT scan on Monday which, to our horror, showed considerable tumor growth.  It also showed a slight effusion (fluid settling) around both lungs...remember the horrible chest tube escapade?  His platelets are also incredibly low and can't recover, despite donor infusions.

So all of that combined means no MIBG treatment in San Francisco.  We are devastated.  Apparently the treatment just isn't effective against such rapidly growing disease, as it needs to be stable - or not growing.  The doctors also aren't willing to do the therapy if the effusion increases and he needs a chest tube.  He would be draining radioactive fluid...not good.

So we are gathering information and trying to make a new plan. Right now we are planning on doing a chemo combination he hasn't seen before: irinotecan and temodor. This has worked before in kids like Case to put them back into a stable condition. It would never be the cure. That's what we were hoping for with MIBG therapy.

On top of all of that, Case is miserable! We are all thinking he has a stomach bug right now. He has really painful retching and can't eat for the past two days. Poor baby. All in all, we are all a nervous wreck on behalf of Case and his comfort level. We have no idea what is going to happen.  

Prayers on behalf of Case's comfort, our peace of mind, and for inspiration for the doctors would be much appreciated.  Thank you!


  1. I'm not sure if I've ever commented before, but I was directed here from Jared Oaks' blog in memory of Krista, and I've been reading for a while. I am so sorry that things with Case are not going as well as we would like. Please know someone in Alberta, Canada is praying for your sweet little guy . . . and for you!

  2. Always .... daily prayers for each of you.

    AJ and Cindy

  3. Prayers from SoCal from Mandy's mom!

  4. I don't personally know you, but I want you to know I pray for Case. Such a sweet little guy with wonderful, caring parents. Keep your chin up.

  5. Blessings on all of you!
    Kevin & Cindy Hinckley

  6. OH NO!!! I was expecting to get on here tonight and read all about your plans for San Francisco. I am heartsick for you all. My prayers are continual. I will pray now for Case to be comforted and out of pain and for you all to have some peace in your hearts.

    Much Love,

  7. We'll be fasting for you this weekend and keeping you in our prayers. I'm just so sorry. My heart hurts for you. I love you Emily!!!

  8. Praying hard and sending out prayer request to friends and family. I'm a former patient of Xavier and have been following Case's progress through this blog. You are an amazing famiy!
    Deborah Anglin

  9. Praying for Case and all of you Emily.
    The Bettison family

  10. Prayers, prayers, and more prayers... for Case's comfort, for inspired doctors, and for strength and peace for you, X, and all of your family.
    The Kellogg family

  11. Hello as I feel there's a small
    Greetings from Polish

  12. Hi Emily and Xavier, I am sorry to hear of this latest news. I somewhat get the roller coaster ride you are on. Hang in there (as i know you are). Keep praying, giving him priesthood blessings and of course, as i know you do. lots of lovin.

    Prayers for Case and your family.