Thank you for your prayers today. I felt peaceful, held up, and encouraged. Today showed many smiles from God. This, for example, is apparently the funniest thing Esther has seen.
When we got to the infusion center we were taken care of by one of our favorite infusion center nurses, Julie. They had a room set up for us on the 7th floor, so it looked to be a short stint in the clinic. But as is everything hospital, the plan changed and we spent most of the day in our room with a view. There are a bunch of private rooms in the infusion clinic and in the back there is a big room with a wall of windows looking south. There are about six areas sectioned off by curtains. Usually it's freezing back there, but today it was warm.
Right when we sat down in our area, our Art Therapist friend, Miss Pat, was there ready with paint. Esther painted a masterful blob on one piece of paper and some flowers on the other. Right when Esther finished her paintings her favorite show (at least this week), Doc McStuffins, came on the Disney Channel. I couldn't quite catch it, but she was grinning, EAR. TO. EAR. I called her name and this is the remnant of a HUGE grin.
Our nurse got her chemo started, which is a feat. This round is fairly complicated. She three chemos at the same time, a 72 hour straight infusion for three days, a short, easy one each day, and a 6 hour infusion the first two days. The 6 hour chemo requires at least two hours of pre and post hydration to flush it all out of her system. This all gets tricky when we work in her anti nausea meds, a lot are not compatible with the chemo or each other. They are fine in her body, but will crystalize or react if they mix in her IV line, so the nurse has to really be on top of it and plan ahead because she has to flush the line before and after each medicine.
When we got to our room we were greeted by several familiar faces and excited "Hi, Esther"s. These people love her. The nurse practitioner told us when we were still in clinic that the resident begged to take care of Esther this week. It was so funny because when she walked in she was very casual. "I think I've taken care of you before." HA!
We were originally going to be on the 7th floor, but our second room assignment was on the 8th floor. A nurse we really enjoy, Rebekah, stopped by and said she had to come say hi because she bought the charge nurse on the 7th floor a cup of coffee in exchange for Esther's room assignment. She had to at least come visit, she bought a latte for it!
Esther nurse today, Stella, was so friendly but then another nurse, Julie (different Julie than infusion center Julie), started doing the dirty work...collecting urine samples. Stella poked her head and commented she won't have to do anything because everyone is so eager to help out Stella's patient. Her nurse tonight is a third Julie and she's great!
I felt so loved by the care providers here. More smiles.
When we walked in to the clinic this morning Esther said, "I want to see Dr. Garrington today." He is our attending physician and has been out of town for a few weeks. It turns out he is the doctor on the floor this week. She was so excited to see him. We talked a bit about the change in therapy. He told us he was actually with a doctor who had cared for one of the children who became sick from the MIBG study. Dr. Garrington said he didn't feel comfortable letting us participate and would've talked to us about changing course but the next day the study was stopped. He told me it is very rare for a study to have such negative effects. Pediatric oncology is very slow in progression because they are not quick to take big research risks. He said he missed caring for Esther and was disappointed to not help us more during such a big change.
We have a good, caring doctor. Another smile.
God was kind to give us a pleasant day, full of His smiles. God meets us where we are at. He is not a cruel, heartless commander, void of affection. He reveals his kindness over and over throughout our days...it's often a matter of if our hearts are ready to see.
Tonight, I am thankful for this hospital and the men and women who have WILLINGLY invested themselves in the lives of cancer patients. This is an intimate investment. These nurses see more of our daily lives than anyone else. They see how we cope, our attitudes, our habits, all of it. They really care for the children here, for Esther. With each investment in the relationship there is a loss...the child gets better and doesn't come anymore. If the child doesn't survive it's a whole different loss. Praise the Lord for these people. Pray for them to see God's smiles and love for them through Esther's life.
One of the nurses told me she primarily works in the BMT part of the oncology floor and asked if I was prepared for the intensity. I'm not sure you can be prepared for it. Tonight I prayed that God would be revealed through this suffering when Esther has her stem cell transplant. That she would be miraculously spared of the ugly side effects and the nurses and doctors here would be able to see nothing than God's power.