Home is much more enjoyable than our hospital room and it has been nice to take a break from "Elmo in Grouchland" [except for the opening scene....a montage of Elmo's ode to his blanket....which is amazing]. We have a wonderful home-nurse named Lynn, who is on-call on an as-needed basis. She helped us change her dressing Friday night....which was just as rugged as the first time. Rogan was only sick once and the most stressful week is now over.
On Monday 8/11 we were back in the hospital at 8 AM for our scheduled "Clinic Day"...another morning spent NPO [fasting]....which is always tough for Rogan. We had blood drawn and then went down stairs for her procedure....where she is taken into the surgery room and given anesthesia through her central line, immediately falls asleep [scary] and is handed off to the doctors. Over the next 30 minutes she had the following work done:
1.) bone marrow aspirate
2.) back poke [test and treat spinal fluid]
3.) change central line dressing [thank heavens!....better you than me, doc.]
She woke up groggy and angry...yelling for a baba [bottle] and a numana [banana]. She proceeded to crush an entire large banana in 20 seconds and wash it down with a pint of milk, Cheerios and cranberries. [one of the drugs she is receiving twice a day is a steroid...that attacks the "quick-multiplying" Leukemic cells...and also makes her ravenously hungry]
After recovery, we were back up stairs where Rogan received her IV chemo via her central line. Her blood draw showed that she was low on platelets, so she received 1 bag via IV. We did not leave the hospital until 2:30 PM.
Home since Monday afternoon 8/11....the greatest challenge has been administering her combination of 4 different drugs orally. Despite being ravenously hungry and eating like her Dad.... her "distinguished palette" can pick it up in most everything we have tried to disguise it in....and it has now become a full-time job in itself. Aside from Sesame Street in her high chair and staring at the Tractor on our street...pretty much everything else seams to be a nuisance to her.... including bath time!...which was once a favorite. The doctors have warned us of this inevitable "roid rage".
…wanting to keep an extra close eye on her, she has now joined us in bed...which Dad has aggressively spent 19 months attempting to avoid at all costs. She likes to sleep completely perpendicular to us...usually her sweaty head in Dad's neck, swatting my face every time I move and her heals in Mom's belly, kicking like Bruce Lee. At approx 3 AM each night she wakes up and goes on another “roid induced” eating binge. 2 nights ago she woke up and ate 2 pieces of toast with jam and a whole milk bottle….last night she ate 2 entire bananas and a whole milk bottle.
GREAT NEWS: On Thursday 8/14 we got a call back from her doctor on the results of Monday’s bone marrow aspirate….it showed no production of Leukemic cells, which is the best news possible for her Day 7 benchmark and also puts her in the highest “cure rate” possible.
WALKING: It has now been approximately 19 days that Rogan has refused to walk. Again, our doctors attribute that to the Leukemic cells in the bone marrow, “crowding out” the space and creating “bone pain”. 2 bone marrow aspirates and 2 spinal taps only 7 days apart can’t help either. We hope that the chemo will knock the Cancer back enough in the coming week to where the pain is relieved and she takes her first steps again. Before she got sick she was almost running…and Mom & Dad had taught her to kick & trap a soccer ball and do a “Sumo step”….[where if you say “Sumo…..step!” she will balance on 1 leg, then slam the other down and laugh.] Her hair is beginning to thin and fall out a bit…at approximately the same rate as Dad’s…so we may be shaving our heads at about the same time.
NEW BABY: Rogan’s new brother or sister is due 8/30. Mom is feeling great and, I won’t go in to specifics, but things are progressing as scheduled and we are looking forward to the newbie. A full moon and a cold front are on the horizon…so stay tuned. The Canyon is closed for a few nights this week...so we are hoping to avoid going into labor on one of those nights and being forced to off-road it over Guardsman’s Pass. If you are reading this, please help us “manifest” a delivery when the Canyon is open and my sister is still in town.