Sunday, February 21, 2010

I am thankful that the weeks pass quickly. She finished Cycle 5 on Tuesday. They did an MRI of her brain wanting to see one of the nerves that was affected by the lymphoma. The nerve looks OK but she still sees double and cannot close it by itself. Since they don't know the extent of the damage that was done, they don't know when or if these functions will return. They also made note that her white matter is spongy, but told me not to worry about it...OK. Her sinuses were worse, so she started another antibiotic. She is currently taking all her medications by mouth, so she can be more mobile. This is making her fuller and less like wanting to eat. She is still not gaining weight. She has been more tired after this round, however we took a brief field trip from NIH to the movies last Thursday. We saw "When in Rome". She laughed and enjoyed our time away. We are looking toward getting a pass for the weekend to my sister's if all is well by Friday, and she is not neutropenic with fever. Her muscles are weak and aching. She received a massage on Friday which she loves!

Kelsey is coming for her regularly scheduled appointments on Sunday through Tuesday. We look forward to her visits. Kelsey and Karly have a special bond. Someone we have a special relationship with has offered to take Kelsey and I to her hair salon for haircuts on Tuesday. I am SO looking forward to this. My hair hasn't seen any attention since October. Hey, girls...the swoop is getting better.

We have had a great week of temps and sunshine. Much of the snow has melted. It is like a receding hairline along the sidewalks. I open the blinds everyday in her room(as the docs ordered) for which I'm thankful. Sunshine does a body good. Some days, she really just doesn't like the light, but we compromise to half blind.

She is so much better than when I brought her here which is encouraging. We have seen many kids come and go...some have been here as long as us. I debated sharing this...but wanted you to know some of what I deal with as a mom. In January, I was in the family room where two moms were sharing an adult meal, and we started sharing our situations. We mostly shared how our faith is what keeps us strong. It is what we trust in and it is what we live in. It is where we start and end our days. The daughter of one of the mom's was in ICU at that point, and she had just returned back to NIH after delivering a baby. How hard it must be to leave an infant and watch another child struggle to live. Her daughter in ICU died three days ago. It has made me sad, and it makes me afraid. That is when I must remember to choose to put my energy and thoughts in His presence. Whenever I start to feel afraid, He is my strength and shield. Not only must I entrust myself to His care, but the lives of the girls. Psalm 56:3, "When I am afraid, I will trust in you." Thank you always for praying and caring for us.

Love,
Mom

3 comments:

  1. I sit here and weep as I read your posts. I am not sure altogether what emotions I am feeling. Joy, Sadness, Faith, Fear, Joy again, hope, and just plain ole parental love. Your faith has indeed become the faith of the Son of God to walk in such a season of uncertainty as you experience this intense time with your precious family. I find myself reaching out to you all through my tears of intercession. I have in my years seen tremendous miracles and have rejoiced with many in their victories. But I am not sure I have read such transparent words. I rejoice in the Lord for your honest heart and openness to share your day to day strengths and weaknesses. I don't even know you, but I can say that I love you all. I release my faith in the awesome power of the Son of God to join your unparalleled faith. What a tremendous testimony you have. Thank you for sharing and just being real. Rich blessings to all.... -Loren Sprowl

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  2. Tammy, I am praying for you, Karly and Kelsey. In the face of fear, in the midst of pain and challenge, I pray that the Lord will allow each day to be a special gift, complete with at least a moment of joy, special moments of relationship, that there will be something to cherish from each day. I pray that the Lord will be your refuge and shelter from the storm, that he will guard your heart and mind in peace that passes understanding. May He be present will each of you tangibly, to be your shelter.
    Rosemary Kirby

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  3. I don't know what to say except that we are constantly thinking and praying for you all. Thank you for the updates.
    Sarah

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