DAY +100!!!

WBC- 3.7
Hgl- 9.9
Hct- 30.7
Plts- 119
ANC- 2.1
Percentage of detectable abnormal (leukemic) cells and/or bcr-abl (Philadelphia chromosome)-
           0.00000%
Perentage of donor cells in the bone marrow-
            100%

You know that feeling you get when you are waiting for news, and you don't know if the news will be good or really, really bad? Maybe you found a lump, or you had a very important audition, or you see a police officer walking up your sidewalk? Well, I've had that feeling all week. Claire had all of these tests done- really big, important tests- and then we had to wait. And because we have had the bad scenarios happen, we know that bad scenarios are a real possibility. We aren't new to this rodeo. We have rung the "end of treatment/end of chemo" bell. Twice. In fact, as we were getting all of the business of our appointment done today (blood draw, dressing and clave change of Claire's central line, Pentamidine infusion) one of the bone marrow nurse practitioners poked in her head and said, "How are you guys doing?" I replied by saying, "I'm not sure yet. How ARE we doing?" She smiled and said, "Today is a good day." That's when I finally took a breath. Dr. H had Claire read the report. 0.00000% abnormal cells and 100% donor marrow. David said he didn't know whether to laugh or cry. Her heart is functioning fine, but they will keep monitoring it because heart problems can develop later. Her pulmonary function has decreased a little, so they will test again when respiratory/inversion season is over. Dr. H asked Claire if she would like to get her central line out now and get IV pokes at her appointments, or if she would like to keep it in for a few more months and avoid pokes. She chose now, so that will probably happen in the next few weeks. (She hasn't had a full shower or bath since July. She just uses a handheld shower head and tries not to get her chest wet.) They will continue to reduce her immunosuppressant and increase her Dasatinib dose. When you get an organ transplant you take anti rejection medication for the rest of your life, but that's not they case with a bone marrow transplant. The Dasatinib, however, she will continue taking for a few years. Even though we have reached this big milestone, the journey is far from over. Our appointments are every two weeks for a while instead of every week. At the six month mark she will start all of her childhood immunizations again. She has no immunity to anything, so she needs to wait until after flu season to really jump back socially, but many of her restrictions are over. She can actually eat salad and maybe even sushi! Dr. H even said it was reasonable to start talking to Claire's university about her going back to school in the fall. But, because of a study we agreed to, she will be monitored for the rest of her life as a bone marrow transplant recipient.

True confession. I have a lot of resentment. I know this about myself, and I'm working on it. I resent other kids Claire's age who are living a normal life. I asked Claire today if she felt resentment like that, and she said no. And she really doesn't. She just doesn't think that way. She has a few cancer friends, but, strangely enough, she is not as exposed to the cancer community as much as I am. In the past few weeks I have seen precious children die, others who are running short on options, some in the heat of treatment, and some who are celebrating time off treatment. Just like these families, cancer has changed us forever. But, despite my resentments, I have learned some beautiful lessons. I recently spoke at a large church meeting. Here are a few of the things I felt inspired to say:

"As hard and as lonely as it sometimes is, the opportunity to put aside my own interests and care for Claire during this journey has been the greatest privilege of my life. If you didn't know Claire and you met her for the first time she might not seem too remarkable. She's kind of quiet, she likes anime and science fiction, and she herself admits to often feeling awkward in conversations or groups of people. But in caring for her I have had many, many moments when Heavenly Father allows me to almost see her as He must see her, and I can say with certainty that she is absolutely the most remarkable person I know. And the beauty of that, I believe, is that He sees all of us that way. I believe that in His eyes and through His love we are all remarkable - capable of doing and being things we never thought possible.

We are often asked at the hospital how we can remain so positive and happy, and the answer is simple. It is because we are lifted and sustained every day by God's love. And we have seen this love through so many people, through our friends, neighbors, Ward,and particularly through our team of nurses who live their lives each day in such selfless service to others. We don't know what the future holds, none of us do really, but we do know that we are in God's hands.

In the October 2009 LDS General Conference Pres. Deiter Uchtdorf said, 'Though we are incomplete, God loves us completely. Though we are imperfect, He loves us perfectly. Though we may feel lost and without compass, God's love encompasses us completely. .. No matter our distress, no matter our sorrow, no matter our mistakes, our infinitely compassionate Heavenly Father desires that we draw near to Him so that He can draw near to us.' "

BTW, I want to give a big shout out to our neighbors, who have left gifts on our doorstep every day for the last 100 days. It's been so fun! And I'm going to keep blogging about this crazy journey that is far from over.

      And sometimes, if you are very lucky, you get Mexican coke in a bottle :)

         I see a ponytail in her future...

                         These two love a good puzzle.

      Claire looking not too happy at the dreaded pulmonary function test.

      Blow, Gabriel, blow! (Don't worry if you don't get it. It's a musical theatre thing.)

             Can you spot the true superhero?

              Ummm, whose appointment is this, anyway?

                       Toasting 100 days, and a long life ahead.