Sunday, November 11, 2012

Our new normal

When the girls were newborns it felt like just as soon as we would get in the routine of their nap schedule and feeding it would change. This was especially true for Katherine. She was about 10 days late and an emergency C-section. She was tangled in the cord, and the doctors thought she had lost over a pound that last week in my belly. Her skin kind of hung off her bones and she had a saggy little behind. As a result, she was a voracious eater. The first week she ate round the clock every hour. Then slowly she moved to every couple hours. She was never a long napper. She would take 45 minute power naps and would be up again so she was constantly forcing us to adapt to her new schedule. Just when we got in the groove she would drop a nap or a feeding and we would start all over on the routine.

This last six months has felt the same constant shifting of normalcy. We were all together for our last year in China which was great. We packed out in May and moved to temporary housing and got use to that. The girls and I, and our dog, Lilly, then flew back to the US early June. We got use to the constant move in deliveries and Chad still being in China. We also had the hurdles of the transition from summer vacation to starting a new school and braces which we cleared. Finally Chad arrived in mid Sept and we had to settle back into being a family of 4. He had been back less than 4 weeks, we had been commenting on how nice and "normal" our lives were when I was diagnosed with leukemia and admitted for treatment.

I have been in the hospital 28 days now. My resident rotates off this unit on Nov 15 and we have been joking we are racing to see who gets off first him or me (we are both hoping it will be me!). Our new normal is definitely Chad being a single parent and me being in the hospital. The girls and Chad are in the groove of the routine of school and life at home. I am use to the every few hours vital checks, the constant IV infusions and transfusions and my cozy little room.

We are still hopeful I can come home tomorrow and we will settle into yet another new normal, but it is not definite based on my counts today. My counts are up today and my white blood cells are 1.0, but my neutrophils are 320 (need 500 to go home). So we will see tomorrow if my doctor will let me out or if I will have a few extra bonus days.

The final pathology report is back on my bone marrow biopsy. The percent of hairy cells has dropped from 100% at diagnosis to 30% now. Given the drop is over 50% that means my body responded to the chemo. Obviously we would have liked to have a lower number than 30% of cancer cells still left. The doctors say the hairy cells may continue to die off and the number could drop at the 2-3 month biopsy but not a good sign for hitting complete remission in one round of chemo. Not excited about the thought of doing this again, but just looking forward to getting home now for at least a few weeks... we will see what my doctor says tomorrow and will keep you posted.

2 comments:

  1. Hey Beth,
    Let me know when you need a visit again. Don't want to intrude on your sister's visit or interfere in your hopeful home-going, but also don't want you to think I have forgotten you.

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  2. Best of luck - hoping you get your wish to go home tomorrow. If you don't it just means that your body is not ready - and we want you to be cured so hang in there!!! Stay strong!!

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