Candace’s Story

Site created on September 1, 2019

Candace was diagnosed with POEMS syndrome at Mayo Clinic in August 2019.  Here we invite our friends and family to follow her journey.  Thank you for your support and encouragement.

Newest Update

Journal entry by Peter Heule

From the porch upon the top of the high terrace they could see beyond the stream the green fields of Rohan fading into distant grey.  Curtains of wind-blow rain were slating down.  The sky above and to the west was still dark with thunder, and lightning far away flickered among the tops of hidden hills.  But the wind had shifted to the north, and already the storm that had come out of the East was receding, rolling away southward to the sea.  Suddenly through a rent in the clouds behind them a shaft of sun stabbed down.  The falling showers gleamed like silver, and far away the river glittered like a shimmering glass.
"It is not so dark here," said Theoden.
'No,' said Gandalf.  'Nor does age lie so heavily on your shoulders as some would think.  Cast aside your prop!'
From the king's hand the black staff fell clattering on the stones.  He drew himself up, as a man that is stiff from long bending over some dull toil.  Now tall and straight he stood, and his eyes were blue as he looked into the opening sky.
'Dark have been my dreams of late, but I feel as one new-awakened…'

Bone marrow, flow cytometric immunophenotyping; No monotypic plasma cells identified  (MRD-negative)
Vascular Endothelial Growth Factor (VEGF) - 37.1 (previously >700) (standard range <=96.2 pg/mL)

Lambda the terrible is no more - the lair empty
…at least for now and we hope forever. 
All which was laid in waste, like a new garden, is renewing, its green and flowering buds beginning to stretch.

Candace still finds herself miles from where she was a couple of years ago, but she is steadily improving.  She has not yet cast away her prop but the cane is seeing far less use of late.  Days and weeks come and go.  A little improvement in strength, a little more flexibility, a good nerve sensation where once there was only non-functional pain.  Now purposeful pains are a blessing.  We hope that her trajectory will be an incline, long in life with much greater physical freedom that she has had of late.

Today will likely mark Candace's final entry in CaringBridge. 

We feel to give our thanks to many of you who have supported her journey to the Lonely Mountain, directly and virtually.  We thank you all for your kind notes, texts, gifts, wishes, thoughts and especially prayers. 
We, like so many of you, remember the 1% (Mayo)-2% (others) that don't survive the chemo and stem-cell treatment; the 29% that don't win the POEMS fight on the first round or ever; the many others who undergo this same treatment regime to slay much larger dragons against frightful odds. 

We remember that little girl in the flowery yellow wheel chair and her unmet family and caregivers who likely are giving  nearly all with an expanding love - the tired kind that still seems to grow deeper with the passage of hard days.

We remember our blessed duty station, placed serendipitously near a medical Zion, having been treated by the planet's leading expert on our niche disease at Mayo. The many others in that same Zion who daily sought a practical and lifting empathy for their patient are no less dear in our memory.

Lastly, we thank the perfect Eternal Teacher even more, knowing that this class might well have included an inevitable Final.  If so, it would ever have been wise - a necessary part the journey.

"Then the prophecies of the old songs have turned out to be true, after a fashion!" said Bilbo.
"Of course!" said Gandalf.  "And why should not they prove true? Surely you don't disbelieve the prophecies, because you had a hand in bringing them about yourself?  You don't really suppose, do you, that all your adventures and escapes were managed by mere luck just for your sole benefit?  You are a very fine person Mr. Baggins, and I am very fond of you; but you are only quite a little fellow in a wide world after all!"
"Thank goodness!" said Bilbo laughing….

Candace and I bid you all a very fond farewell!

Patients and caregivers love hearing from you; add a comment to show your support.
Help Candace Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Candace's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top