Day +4

WBC- 0.2
Hgl- 11.1
Hct- 32.5
Plt- 16
ANC- 0.0

Claire had another platelet infusion today. She will be receiving many platelet and red blood  transfusions, so thanks to everyone who donates. It is an amazing gift to give. Surprisingly her red blood counts are hanging in there, probably because she received such a hefty dose on Monday with the stem cells. She has had some fevers, which is an expected response of her own body, and her antibiotics were changed to treat possible infections, but nothing has shown up in her daily blood cultures. She has started writing things down so she doesn't have to talk too much, since talking is very uncomfortable. A few people have asked me why she has mouth sores. The very high doses of radiation and chemo that she received in preparation for her BMT kill any fast growing cells in the body. Cancer cells are fast growing, especially in Claire's leukemia, which is why it is considered acute. Things like hair and soft tissue are also fast growing. So your hair falls out (Claire's had started to come back, surprisingly in white blonde (!), but is falling out again) and you get sores throughout your GI tract. If you look inside Claire's mouth, everything is bright red on her gums and tongue. These sores go all the way down to her stomach, and won't start to heal until her immune system starts working again. The excessive mucus that she sucks out with a tube several times a day (she keeps the suction tube tucked under her pillow and calls it her best friend) is the body's natural response to try to protect and coat the upper GI tract. She will probably have diarrhea, too, as the body tries to protect the lower GI tract. And yes, she will probably have sores there as well. She now has a pain pump which she can push as often as every ten minutes, and it is keeping her pain under control. We are figuring out the best pain meds for her. Morphine makes her really itchy, but Dilaudid makes her a little loopy and gives her weird dreams. Hmm. She was also given Lasix today to clear excess fluid out of her tissue. She is weighed at least once a day, sometimes more, to make sure she isn't retaining too much fluid. The meds (she also gets pretreated with Benadryl to prevent allergic reactions with blood products and antibiotics) make her pretty sleepy. She tries to get through movies and things, but she doesn't always make it. She and David are trying to get through all of the Star Wars movies, and today she found out that Darth Vader is indeed Luke's father. That will probably be the biggest excitement of the day. At least we hope it is.

I've been thinking a lot about prayer lately. I can't remember if I have mentioned this already or not, but a while back I asked Claire if she was remembering to say her prayers at night. (A mom thing) She said, "Mom, I pray all day long." Yeah, me too. Since her relapse, and in her previous treatments, I have an open, all day dialogue with God. I think it is the only way I get through some days. But I have been wondering about the nature of prayer. Don't get me wrong. I very much appreciate all of the prayers that have been said in our behalf. (I also appreciate all of the love, good karma, positive thoughts, and other support, but right now I am actually thinking about prayer to a Higher Being.) I have, on occasion, hesitated to ask God for what I specifically wanted. I have thought, who am I to tell God what would be the best thing for me? Surely He already knows. I have also had great empathy for the incredibly faithful people who I have been privileged to meet on this cancer journey who I'm sure sent many heartfelt prayers to heaven, but whose children have been taken. If I believe that Claire is doing well because my prayers are being answered, does that mean that their prayers weren't answered? I can't believe that. Then someone at church pointed out the Bible dictionary definition of prayer in our edition of the Holy Bible. (I hadn't voiced any of these thoughts when she pointed it out, btw. An answer to my prayers?) It says, " Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God, but to secure for ourselves and others blessings that God is already willing to grant, but that are made conditional on our asking for them." I like that. It conveys that open correspondence I was talking about as we try to align our will with the will of our Father. And I have seen that alignment in others whom I admire, regardless of the outcome. So I will keep praying for blessing, and comfort, and peace, and even just to share my day, because I like that, too.

        Claire using that blessed suction tube.

        Sleeping with her note pad and pain pump close by.