Unanticipated

On clinic days, we trade stories with the other hematology/oncology parents while our children play board games and visit the pet therapy dogs.  We've had a few scares, but for the most part, our experiences concerning Maggie's treatment have been relatively mundane.  A family with whom we've become friendly told us about their son's six-week hospitalization following an allergic reaction to a chemotherapy drug. A teenage girl of our acquaintance wears casts on both legs because the steroids she has taken as part of her treatment have caused the small blood vessels that nourish her bones and joints to die.  Understandably, we have felt very blessed and relieved that Maggie is doing so well despite the continued toxic assault on her body.


If, a couple of weeks ago, you had met me in the aisles of Food Lion and asked how Maggie was faring, I would have smiled broadly and told you that she is in the final phase of treatment before maintenance - the monthly doses of chemotherapy that will ensure her remission during the remaining (roughly) two years of treatment.  Currently, we are visiting clinic every ten days, ramping up the chemo each time - as her body allows.  Thank you so much for asking after her, and please keep her in your prayers.


Her latest appointment fell on 30 June.  She was NPO (nothing per oral) after midnight, as she was having a spinal tap and intrathecal chemotherapy in addition to intravenous chemotherapy.  She and Gus left a little after 7 A.M. and the text trading began.


G:  Ativan hit her hard.  Wow.
(She's been prescribed Ativan to help with her anxiety about procedures.)
K:  Hit her hard?  Her weight might be down enough?
G:  Just hammered.  Doc will see her before labs are back to be sure she's fine.
K:  Tired?  Loopy?
G:  Anticipatory emesis.
K:  Crap.  Poor baby.


Emesis is the medical term for throwing up.  Gus and I first read about anticipatory emesis in a book called Complications: A Surgeon's Notes on an Imperfect Science by Atul Gawande.  About a quarter of chemotherapy patents begin to have anticipatory nausea and vomiting that occur before any drugs are injected.  Some patients have even been known to vomit when they see the highway exit signs for their hospitals.  Maggie had thrown up prior to treatment at the previous appointment, so we assumed that we were seeing a trend.


As the day progressed, Gus continued to text about Maggie's well-being.  At 9:30, she had chills.  At 10:38 she threw up again.  At 1:50 she was still sick and her blood pressure was 80/42.  She received a IV bolus of fluid for dehydration at 2:13, and and another at 3:15.  Her ANC was borderline at 542, but she received her IV chemo anyway (500 is the cutoff).  We postulated that she had tired herself out the previous evening at a friend's pool party.  Perhaps she processed the Ativan differently without food in her belly.


As it turns out, we were seeing a really aggressive virus take hold.


Maggie couldn't eat dinner that night, nor any food for the next three days.  We forced fluids, only to have her vomit them back up.  Her temperature slowly crept up into triple digits.  On Sunday, the on-call doctor requested that we take her to the CHKD ER.  She received anti-nausea meds, fluids, and antibiotics.  Then she was sent home.


We were frustrated and scared the next morning when she appeared much as she had before.  Still feverish.  Still vomiting.  She couldn't walk from the sofa to the bathroom without stopping to rest.  Tuesday was much the same.  Wednesday morning, we called clinic and they wanted to see her.


She continued to throw up at clinic, and now it was blood tinged.  They determined that in the space of a week, she lost seven percent of her body weight.  Her ANC had dropped to 263, and her temperature risen to 102.  Without the ability to resist infection, she had also contracted thrush, a fungal infection of the mucous membrane linings of the mouth and tongue.  She was admitted.

After a couple of days in the hospital, she's rallying, but not quickly.  The virus has run its course and the thrush has been treated.  However, as a result of the accumulated chemotherapy of this phase of treatment, she is suffering from mucositis, painful inflammation and ulceration of the mucous membranes lining the digestive tract.  She is so uncomfortable that she has stopped talking and refuses to swallow her saliva, choosing instead to spit it out.  Morphine was started yesterday afternoon, and seems to be helping.
And in the evening, having not eaten for nine days, she began receiving IV nutrition.

A crowded pole

Please keep Maggie in your prayers.