Comments on: March 4, 2006 http://localhost/2006/03/04/march-4-2006/ Reflections on Living at the End of Life - MDS and Leukemia Sat, 09 Oct 2010 13:56:10 +0000 hourly 1 https://wordpress.org/?v=4.2.28 By: Mary Hewitt Jones http://localhost/2006/03/04/march-4-2006/comment-page-1/#comment-61 Sun, 05 Mar 2006 18:32:17 +0000 http://www.connieore.com/2006/03/04/march-4-2006/#comment-61 Connie,

I learned about your website today at First Plymouth.
My husband Gary was diagnosed with MDS in October 2004. We had many visits to UNMC with Dr. Lori Maness, the very youthful MDS expert. If I can be helpful to you in anyway, in terms of information, short cuts, tricks I learned, please call upon me. We went thru chemo (fludarabine, cytoxin & rituxin; 4 cycles, 3 days on; 21 days off), vidaza, and I rattled UNMC so hard they were willing to funnel revlimid to us even tho it wasn’t approved for Gary’s subtype. What could it hurt? Gary’s MDS impacted the red cell line primarily and underlying it all was chronic lymphocytic leukemia. Gary’s hemoglobin was rarely above 8 and he had 67 units of packed red cells (transfusions) in 65 weeks. We organized a bone marrow drive at First Plymouth last year in February and maybe someday one of those 63 new possible donors can save a life.

The Bach piece was pure joy today.

]]> By: irene Beethe http://localhost/2006/03/04/march-4-2006/comment-page-1/#comment-60 Sun, 05 Mar 2006 02:12:24 +0000 http://www.connieore.com/2006/03/04/march-4-2006/#comment-60 Congratulations on your three upcoming “needle-free” days! That’s great! Our prayers continue! (Oh, talked to my sister in Texas this morning – it was 98 degrees this week for a day or so! Nothing like rubbing it in…the warm weather stuff…they even have flowers blooming!We still have snow!) Ah, but we have “the 4 seasons!”
Joy in Jesus,
Irene

]]> By: Susan Pfabe-Wiggans http://localhost/2006/03/04/march-4-2006/comment-page-1/#comment-58 Sat, 04 Mar 2006 19:14:08 +0000 http://www.connieore.com/2006/03/04/march-4-2006/#comment-58 Dear Connie,
Recently I was talking on the phone with Kristie and she asked if I had seen your website. I said “Yes, and I am surprised how much I have been thinking about Connie lately.” She replied, “Well, she spent a lot of time mothering us when we were growing up,” as we spent so many hours in your home.
The last couple days have brought memories of times in your home. As I smelled bread baking in our kitchen this morning I remembered the many times I smelled bread in your kitchen. As I was sewing something for one of my kids yesterday, I was wishing that I had paid more attention to the sewing lessons in our Sew and Grow Goobers 4H Club!
When I read about your weariness and fatigue, it is quite hard to imagine! It reminds me of the times when I worked at Children’s and saw patients on the oncology floor. I often wondered how parents could put their kids through the chemo regime with all the horrid side effects. I think it took until I became a parent to realize why – it is for the HOPE – of more days, weeks, years, that they can spend together. I am glad to hear that you can feel calm and hopeful. Prayers of hope are being said for you from our family, also.
Love and hope to the entire Ore family,
Susan Pfabe -Wiggans

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