Emily’s Smiles through Difficult Trials

Emily is doing well with the Chemo the last two days. Wednesday was a long day for her. For this week Day 1 ( 6-20-07) she received one dose of topotecan by lumbar administration for the pharmacokinetics studies ( draws taken 15 min after, 30 min after, 1 hour after, 3 hours after, between 6 and 8 hours after topotecan is given). Her first week Day 1 ( Wed. 6-6-07 was the same schedule but administration was through the Ommaya reservoir ( implanted catheter) tube placed into the fluid filled spaces of the brain. This is used to inject the topotecan and to withdraw cerebrospinal fluid. The other 4 days of chemo of each week it is given is through the Ommaya reservoir only, and no pharmacokinetics studies for those days. Emily also had her sutures removed on Wednesday while she was under anesthesia for the lumbar puncture. Glad of that! But taking off the extensive amount of tape Dr. G placed on her new hair growth, around the site of the Ommaya and skin, at the end of the day was heard 2 floors down. He was no where to be found when it was time to remove it! Ms. Jeanne and I had that job. So today Emily was ready for payback. She came to clinic with a 5 inch roll of 3M sticky tape in hand and a needle syringe from her supply. She does not talk much but Dr. G did not stay in her room long, all she did was show him the tape. I explained to Emily so much was placed because she was sleeping when the procedures were done and she could not keep her head very still when she was waking up. Plus we had to move her to a different floor and different bed with that needle and tubing sticking out of her reservoir. Emily still gave him a big smile and knows Dr. G is trying to make her better. She always wants to know when is Dr. G going to come and check on her.
She has done well with her chemo treatment today and physical therapy. She becomes tired in the day and I give her Zofran for nausea, but she tries to keep drawing, or painting or playing with short breaks. Another tx tomorrow morning and Eddie will be here in the afternoon. Saturday and Sunday no treatment, and resume on Monday-Tuesday, then Thursday is Labs, MRI of Brain and total Spine and Drs. evaluation. Then Friday ” Homie Home” for a week.

The past 2 months have been very busy with the new treatment and surgery and a couple of weekend trips and K- graduation done in between. She has kept us moving. Have some pictures to share with our trip to the Mountains, Relay for life, fishing offshore, and her proud moments of graduating from Kindergarten at the Hospital. Trey is doing well and enjoying his summer break. He will be busy this weekend with his cousins and friends, celebrating birthdays and having fun. We miss him and Emily and I can’t wait to be back home next Friday.

Love, Emily and Dawn