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.