Sunrise 6-28-69-Sunset 4-14-14.
I have attempted to write a synopsis of my daughter’s
journey through DPD Deficiency with the Folfox that had 5FU in the cocktail.
She had horrible black blisters in her mouth that caused her excruciating pain. Her
lips were black-they looked like she swallowed charcoal. It was
too painful for her to speak. She
lost every strand of her hair. Cherri had a blister on her right hand that covered her entire palm. She had
blisters on every knuckle on her hands. She was
covered with blisters on her entire body. Before
the blisters she looked like she fell asleep in the sun; her skin was so red and looked like she had second & third degree burns. Her entire body swelled 2 times of her normal body
When we returned to have the pump disconnected; Cherri thought she did something to the pump and I
assured her she didn’t touch the pump. Their
that set up her pump; came flying over to us with apologies stating he programmed the pump
that her doctor came into the infusion room and told Cherri she didn’t have to finish the 118 mls that were still in the pump. She
held her hand to God and said “my last treatment with this nightmare is August 24 and I want to get through this nightmare.” While the infusion nurse was reconnecting the pump- her Dr said “I see
her cheeks are red; so I am going to cut back on the steroids on her second treatment.” He’s
been an oncologist for over 30 years and he didn’t realize that the DPD Deficiency was already attacking my daughter!!
Cherri’s white count never was any higher than .01.
I called a priest to come to hospital to pray and when he saw her physical appearance he suggested he
give my daughter the last sacrament. I saw a
great neurologist in the hall along with an infectious disease MD. After
the priest gave Cherri the last sacrament; she was then transferred to ICU after the neurologist ordered a cat scan on her brain to see if she had a stroke, brain bleed or a
seizure. The cat
scan showed that her brain waves were very very slow. She had been in a private room on the oncology floor for 8 days. After
the cat scan she was moved to ICU by the neurologist. Two
days later-four MDs came in Cherri’s room and told me I had to have her medevacd to the Westchester Burn Center or she was going to die because she had “Steven Johnson Syndrome”. She did not have
Steven Johnson Syndrome; that was the dr thinking. They
did absolutely nothing for my daughter.