Fri, 29 Oct 1999 23:54

Released tomorrow!

Good news! Logan will be released tomorrow (Saturday). His doctor said the bacterial infection in his (the white lumen only) Hickman catheter was identified to be from his skin. (Don't know the significance of this but this justified us going home tomorrow instead of later). Knocker is staying with Logan tonight. They will probably get to walk around the hospital without an IV pole for a few hours. Adam and I danced to the Doughnut Man CD. Adam was wearing his standard outfit--a red and white striped 'cat-in-the-hat' hat and red, furry, Elmo slippers--you can imagine the sight. We also read dinosaur stories; what a fun evening at home. Adam kept patting me on the shoulder while we read, saying, "Mommy's home." We will try to get up early and come to the hospital, so I can make sure I understand all discharge instructions.

Upcoming tests and treatments:

Logan will need an MRI (date unknown) in about 1 1/2 weeks to see if the chemotherapy (3X cyclophosphamide) has shrunk his tumors in his spine and optic chiasm.

A MUGA (I think this is what the Dr called it--don't know what this is) (date unknown) to check his heart function (cyclophosphamide has as a 'lesser common side effect' heart toxicity).

Also, we have a followup exam with his radiation doctor on November 12th. (This will be 6 week check up after his 6 weeks of radiation).

Three phoresis treatments (where they take peripheral stem cells from his blood) are scheduled for November 15th, 17th, and 19th. They are going ahead and planning for phoresis even though it is not certain Logan is still a candidate for a bone marrow transplant.

Also, I will need to give Logan G-CSF shots (2 per day before phoresis) to jump start his bone marrow production for the phoresis.

A second treatment of high dose conditioning chemotherapy (cyclophosphamide again if lesions have shrunk; otherwise, high dose carboplatin if cyclophosphamide didn't work) will begin on either 19th or 22nd of November. This conditioning treatment will be two days but will be at least 3-4 days of a hospital stay. (Carboplatin causes certain hearing loss at a dose slightly above what he will be getting; we are praying that the cyclophosphamide will be effective and carboplatin avoided.)

Prayer Requests: Logan will stay clear of infection and fevers and keep his counts high. His heart function will be good and his body (especially his hearing) protected from toxicities due to chemotherapy. Tumor cells will be targeted and zapped with the cyclophosphamide chemo. The phoresis will yield good results--plenty of cells. The G-CSF shots will be effective. Wisdom for Doctor(s) in making treatment decisions (BMT vs. total craniospinal radiation vs. other treatments). Good communication between Doctors. That I will be able to use sterile techniques (flushing ports and changing dressing over Hickman catheter) effectively to keep Logan's lines 'perfectly' clean. Endurance for our family (and extended family and friends and church family helpers and coordinators) right now. Peace with the upcoming treatment decisions. For Logan and Adam to be happy and secure.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future" (Jeremiah 29:11).

Thanks for praying with us,

Laura