I was Chris' wife/caregiver & this is the medical blog I wrote during his treatment. Short history: dx in July 2010, no initial bone marrow involvement, did 5 rounds hyper-cvad protocol. Found out he is in relapse/refractory status with involvement in his chest, spleen, inguinal & throat lymph nodes, bone marrow, spine & brain in January 2011 when we went to MD Anderson for treatment. The two different rounds of chemo Chris got at MDA could not put him in remission; he died of leukemia/lymphoma on March 18th, 2011, an astonishing and horrific 8 months after his diagnosis.
There is a donation page for organizations here: http://chriscranecancer.blogspot.com

Friday, March 11, 2011

words

CT scan came back normal.

This recent chemo has left Chris weak enough that he is unable to walk unassisted from his hospital bed.  Even with assistance he can't walk very far.
He is too weak to go to the Rehab floor at MDACC so he will be getting transferred to a hospital a few blocks away (Kindred) so he can work on getting the strength back to walk, dress, and shower on his own again.
Right now he is too disoriented to be discharged from MDACC.  The staff & I are working together to figure out how to re-orient him.  The doctors are adjusting his various meds and I have a list of things that help keep him calm.  He doesn't know where he is much of the time, the day it is, the month, or the year.  When he does know those things he isn't able to articulate it to me and medical staff.  He has trouble finishing sentences.  He is anxious and scared.

With his physical capabilities as limited as they are he can't stay at the trailer/rv I moved us into last week.  A few days ago I got a call from one of the organizations I put us on the waiting list for housing, Aishel House.  Here is a link to their website:
Aishel House Mission statement

I can't even begin to express how thankful I am that we have this studio apartment to stay in at a reduced rate for the next ___ months.  This will be the 5th place I've moved our belongings to in Houston in less than 2 months and it's such a relief to know we have somewhere to stay that we can afford and that meets our needs.  I'm within walking distance of MDACC.

I'm exhausted and trying to figure out how to fill my empty tanks up when Chris needs someone by his side that is strong and there for him everyday.  Everyday is roller-coaster of emotions and events.  I'm hanging on as best I can, it's a lonely road.  I'm thankful for the new & old friends that are helping me thru this.

If you want to help don't wait for me to ask.  I have only enough energy to bathe, feed, and clothe myself so I can give Chris all my strength.  I'm sobbing in the hallways but I have to hold steady in his presence.  He needs strength.  If you can come here and be strong for him then please come.  He needs it and I need it.  Having me be the only person that has consistently been here for him is wearing us both down.

When I can get a strong enough wifi connection at the hospital or at our apartment I skype with Magnus.  I have to make sure he sees me smiling and strong too.  I may be crying before and after the call but I can't let my husband or my son see me sad and worn out.

We will be here for at least 6 more months.  IF he responds to his current chemo then he'll need a few more cycles of it.  IF they find a stem cell donor he'll be in the hospital for a month.  Then he will have to  go to appointments everyday for 100 days after his transplant.  Throughout this whole process he has to have 24/7 care.  I've been doing this for over 7 months with him; I and we can't keep doing it alone for the next 6 months.

2 comments:

  1. Amanda,
    I'm so very humbled by your handling of this from the very beginning and I am in awe of the way you have sustained you both. Every day you have made the choice to be selfless, thoughtful, sensitive and loving.

    Ups and downs aside...you as a Woman, Wife, and Mother...you put the most meaning into those designations as anyone could ever possibly imagine. And all the more so because you would never have done it any other way.



    You are so genuine. I am heartbroken for you, but that does nothing for the heartbreak of your own.

    I don’t know what else to say, except to offer comfort and support to you by acknowledging your wounds and distress. I have immense respect for you and think of you many, many, times throughout the day; it puts a lump in my throat and makes my eyes sting.

    I love ya Girl.

    ReplyDelete
  2. Hey Amanda!
    I am sorry to hear Chris is so weak =( I know it has got to be difficult. I really don't know what else to say other than you are an amazing woman for doing all that you do. I wish I was closer to help. I continue to pray for your strength and Chris's recovery.
    But even I know prayer can get you so far. Thanks for the updates. I know you are exhausted, and it's good to reach out and ask for help. I hope your requests are answered and SOON!
    Take care girl.

    ReplyDelete