Wednesday, November 30, 2016

Day 365
   Today, my 20-year-old daughter's bone marrow is celebrating its first birthday. HAPPY BONE MARROW BIRTHDAY, CLAIRE!!!! Last year I was sitting in a hospital room, anxiously waiting as gravity delivered the life saving marrow into my completely depleted daughter, while my donor daughter was recovering and my youngest daughter was trying to not get lost in the occasion. (My three other children and their spouses were also involved.) This year, I am sitting at home by our Christmas tree, baking a cake for tonight's celebration (yellow cake with chocolate frosting and sprinkles, if you are curious) while Claire is finishing up her culinary school class in another town. She will come home later tonight and give her sister, who literally saved her life, a gift. Not the car that one of her doctors jokingly suggested would be an appropriate gift for a bone marrow donor, but something nice and fun nonetheless. We will then all go out to dinner and see a musical together. That is miles away from what we did last year. Miles.
   I haven't posted since Claire left for college in August. I'm not going to lie; that was a very hard transition for both of us. But every time Claire has come home I've seen her have a little more strength, a little more stamina, a little more confidence. This past weekend I marveled as she carried a heavy load of clean laundry down the stairs in the snow to her car. When we asked if she needed help she replied, "No, I've got it." Last week, at her monthly clinic visit, she was showing the nurse practitioner a couple of burns and a cut that she got in her cooking class. Her doctor said, "She got those at school? Wow." He almost seemed impressed. Her blood work continues to be stable, showing no evidence of BCR-ABL (the specific chromosomal anomaly for her type of cancer). I asked what this one year milestone really means. He said that most relapses occur during the first year, it is rare that they happen after the second year, and after five years she is considered cured. He also said that she was doing really well. I mean, I know that, but I think this is the first time that one of her doctors have said it out loud. In a few weeks Claire will have her one year work up. It will be a full day of tests, starting with blood work, then a bone marrow aspirate, an echo cardiogram, and pulminary function test. She also needs to see an ophthalmologist to check for damage to her eyes, as well as having info from her dentist and gynecologist sent to her doctors. Then we will meet after Christmas to get all of the results. I'm not really worried about it, though. If there's anything this journey has taught us (besides gratitude), it's to live in the present and not worry about tomorrow. Each day is a gift. And today, we celebrate.


             Umm, yes.


           Claire with the group of children being honored at this year's CureSearch walk.


          Claire with Rachel, a bone marrow transplant survivor and one of our awesome nurses at  Primary Children's Hospital.      
   

          Four beautiful survivors.



             Looking good.




               We never pass up a photo-op.


              A little breakfast date before her clinic appointment.



               With her cousin's little girl. I just thought this shot was adorable.



               Thanksgiving Day pie breakfast.


                           So much to be thankful for this year!


              We recently made breakfast in the Ronald McDonald Family Room at the hospital.


             Claire used her culinary school techniques!


                All smiles.



                    So very grateful.