|Nikki's Story Summary
Nikki was born on March 22, 1999 in Greenville of South Carolina. She had been the center of the family, and brought so much joy and love to us. Physically she developed so well that every scheduled checkup her weight and height were all above 85%, considering she is of Chinese heritage. She started walking at 7 months, and talking when she was 10 months old. She was so energetic, laughing, giggling, dancing, singing, running, playing, messing up, even until the night of Oct 25, 2000.
Then the tragedy hit us in the morning of Oct 26, 2000 when Nikki spiked a low grade fever, 38.3oC or 101oF. We took her to our local hospital Greenville Children’s and after a bone marrow aspirate the doctors told us that she might have leukemia. We did not believe them so we went to St Jude Children’s Research Hospital in Memphis on Nov 1, 2000, seeking a second opinion and a better treatment in case, with a possibility of zero we thought, Nikki did have leukemia.
On Nov 8, 2000 at St Jude, Nikki was diagnosed with AML-M7 (Acute Myeloid Leukemia, subtype M7), or AMKL (Acute Megakaryocytic Leukemia). From Nov 14 to Nov 19, 2000, Nikki had her first round chemotherapy, and developed various side effects including loss of appetite, diarrhea, vomiting, hair loss, high fever. After the first chemotherapy, she was in complete remission; however, she developed a terrible AHS infection on Nov 21, 2000 when her immune system was suppressed.
On Dec 1, 2000 she went to ventilator due to breathing problem resulted from fluid buildup in her lungs, and on the second day, Dec 2, her blood pressure shot to the roof. A head CT-scan on Dec 5 showed that somehow Nikki’s front brain ventricles were enlarged due to fluid buildup. Immediately on the same day of Dec 5, we rushed to LeBonheur Children’s Hospital for a brain surgery, trying to drain the extra brain fluid out; however, we failed because the fluid was too thick to drain. Nonetheless, the brain procedure left a scar on our head and altered our vision nerve system and messed up our beautiful eyes.
From Dec 19 to Dec 25, 2000, we had our second round of chemotherapy, and we did not feel well most of the time and we again experienced the throwing up, diarrhea, vomiting blood, skin rash. And a fever on Dec 27 made us stayed inpatient till our blood counts came back around Jan 10, 2001.
On Jan 10, 2001, a CT-scan showed that Nikki’s front ventricles were recovered to normal; however, her brain temp horns were enlarged. On Jan 23, we went to LeBonheur Children’s again for a second brain surgery and put a permanent shunt in our head, which magically recovered our beautiful eyes completely.
Because of her leukemia type, Nikki needed a bone marrow transplant in order to be in a category of 50% cure rate. She had a matched unrelated donor, however, 2 days before the pre-transplant conditioning regime we were told that the donor was disqualified because one of the donor’s liver enzymes was a little too high. Afterwards we were lucky that a brand new protocol was just approved at St Jude to use one of the parents’ stem cells for transplant, and we did so on Feb 27, 2001.
Unfortunately, Nikki’s leukemia was too aggressive, and before baba’s cells had a good chance to grow in her bone marrow, the leukemia cells came back. Though afterwards we tried various treatments including baba's T-cells and IL2, none of them worked. On May 2, 2001, we lost our fight, and Nikki joined her Father in heaven with no more pain and suffering. Nikki lived on this earth for 2 years, 1 month, 10 days, 13 hours.