September 11th, 2010   1 comment

Again, another bright and early start with a 7am OR trip.  Charlotte would have a single port installed in her chest with a direct line to her veins so we could lose the wrist IV line.  She also had another bone marrow sample and spinal tap while on the table.  The spinal tap would show us if the leukemia was in her nervous system.  She also received her first chemo drug directly into the spinal cord just in case leukemia was present.  Dr Diamond returned to us after the surgery and after she had the results back from the bone marrow sample and came to our room with a posse of Drs and students.  Again, she apologized to us while she told us that Charlotte had the more rare and serious AML, not ALL like she was originally 95% sure of.  She went on to talk about the long road of treatment and how it will not only break down Charlotte’s body during many different treatment rounds, it will tear the family and our lives apart as this treatment schedule requires hospitalization stays of 7 or more months.  Usually treatment for 4 weeks, then perhaps a return home trip of one week, only to be back in the hospital for another 4 weeks…thus the cycle will continue until the treatment is complete.  All told, this could take up to 10 months, 80% of which will be spent in the UWCH behind closed doors on the south side of 4th floor.  It reinforced to us just how aggressive AML is.

The overall success rate is nowhere near as high as the ALL cancers, but still about 60%.  Our options were very limited as Dr Diamond told us that if left untreated, it would kill Charlotte within two to three weeks.  At this time we also discussed the possibility of using our unborn baby’s cord blood.  This may be an option (if an appropriate match). It could shorten Charlotte’s treatment time in the hospital by half, and could increase her prognosis another 5-10%.  She also mentioned that a positive aspect about Charlotte’s condition was that she noticed no swelling of the kidney, liver or spleen. Often when children are diagnosed with AML, their organs have already been overcome with the cancer that it makes it more difficult to treat.  So we may have caught it just at the right time.  We are still taking this as a good sign, and perhaps some of the only good news we have received in this whole process.

Because AML is so aggressive, we were told that chemotherapy would begin as soon as the pharmacist could prepare the medications.  Chemo started at 8pm with a drug called Cytarabine (Ara-C) that is pushed into her port in under 15 minutes.  We were told that this drug could cause high fevers.  This drug will be given every 12 hours for 10 days.  The second chemo drug (Daunomycin) was given as soon as the first was completed.  This drips for 6 hours on 3 separate days during the 10 day cycle.  This drug causes Charlotte’s urine to turn red.  The third chemo drug (Etoposide) was started at about 3am, drips for 4 hours, and is given every day for 5 days of the 10 day cycle.  This drug can cause the blood pressure to drop, so Charlotte’s blood pressure must be checked every 15 minutes for the first hour, then hourly if everything is okay.  Charlotte also has a list of oral drugs she must take (complete list to follow).  Needless to say, our peanut did not enjoy vitals being taken so often and in the middle of the night.  Not much sleep was had by anyone this first night.  Due to the chemo drugs being highly concentrated in Charlotte’s urine, Amy has been advised that she must wear gloves to change Charlotte’s diapers and must shower immediately if urine touches Amy’s skin through a leaky diaper.

A little bright note today.  My sister, Lynn, drove in from Nebraska today to spend the next few days with us.  We couldn’t do any of this without our family being so supportive!  Come back soon sis!!

Posted September 14, 2010 by L. Elske in Uncategorized

One response to “September 11th, 2010

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  1. It will be a long road for all of you but you have the Big Guy upstairs along for the trip. Our love andprayers are with you all.

    Remember, Lon, you can spend those long hours at the hospital baptizing people in the hallways:)

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