Last month, we shared a glimpse into Abby’s life after a bone marrow transplant and the complications brought on by the very treatments that saved her life. Although cancer free, some of her organs are beyond repair. But even through these difficult days, Abby’s spirit remains strong. Her dad shares this update.
Abby with her family.
Thursday morning before work, Abby’s doctors called.
On the line were two of her transplant doctors, some intensive care specialists, a social worker, and a quality of life doctor. They suggested I come back to the hospital to be with Abby and her mom, although there was nothing emergent.
Abby is sick, they said.
“We are very doubtful her kidneys will work again, her liver looks to be very injured although improving, she is battling an infection, and the graft-versus-host disease looks to be uncontrollable.
“But even if she recovers from these ailments,” they continued, “it would very likely only be temporary. She requires a good amount of pain killers. We want you to strongly consider a DNR.”
DNR. Do Not Resuscitate.
The doctors believe Abby may be beyond saving and we have begun discussing end of life options.
Abby proudly wears her “I Am Abby” shirt.
Right now, Abby is cancer free. She’s been cancer free since her transplant a year and a half ago.
But her organs have sustained so much trauma over the years, and the kidneys specifically may be beyond repair. The GVHD is putting undue stress on her whole system and requires medicines that need functioning kidneys and liver.
Meanwhile, she has too much fluid in her body resulting from weak kidneys and leaky capillaries, yet is simultaneously dehydrated to the point that she has severe low blood pressure.
In short, medicines are proving to be decreasingly effective, and the treatment of one condition adversely affects her other weakened systems.
The way one physician described it: “Abby has used up all her reserves.”
Abby with her sisters in March.
Between tears and lamentations, end of life meetings continued Friday. We indicated we intend to take Abby home soon.
The next few days should give a small indication of how much time Abby has left, mostly based on her kidney function, or lack thereof.
The doctors suggest maybe a few weeks, though of course it is an unfair estimate because so much can go well or go poorly. Her survival beyond a few months is pegged at less than 10%.
Friday afternoon and evening, Abby had a few hours of feeling well and lucid, so I took that time to explain her situation to her as best I could.
I don’t recommend trying to discuss impending death with a 9-year-old, but that is my cross.
Abby colors in her coloring book.
She cannot totally grasp the situation — it’s a hard topic to explain to her on so many levels — but she was adamant that she will do anything right now to not die.
It’s hard to even type this, but she clearly said that she isn’t ready to pass because she is too young and there are so many things she still wants to see, do, experience, and accomplish. Those were her words.
I explained to her that I am unable to fix her graft-versus-host disease. After a slight contemplative pause, she replied that she understood but she was willing to suffer the pain and effects of GVHD in order to try to live.
So I told the doctors that we fight on.
Abby at the beach with her sisters.
And fight we will. But Abby’s spirit, as indomitable as it is, is likely not enough to conquer the anticipated organ failures and looming infections.
Her courage and strength and sheer force of will are forever an inspiration to me. It is so powerful and such a beautiful part of her yet unfinished legacy.
Now, Abby is back at our home hospital, Portsmouth Naval Medical Center, where the journey started five and half years ago with her diagnosis. We have been able to keep her comfortable with pain meds.
I expect over the next few days, we will get a better idea of exactly where we are and how we, the Furco Five and our innumerable, thankless, indefatigable support team members across the world, can do the best for our sweet Abby.
Abby’s dad carries her down the pier.
Read more about Abby’s story:
SBF
Tweets »
