Jackie was diagnosed with (AML) Acute Myeloid Leukemia on 6-11-19, right before her 11th birthday. Jackie’s and her mom both got a flu at the same time. Her mom got better and she never did. She kept throwing up and had fevers randomly. Her dad took her to her primary care doctor and was sent to do blood work. Her dad took her Monday June 10 to get her blood work done and her mom received a phone call at work Tuesday morning from her PCP. She was told to get Jackie to the emergency room immediately as Jackie’s white blood cell count was 100+. Jackie was taken to the nearest emergency room and they re-ran the blood test. They were informed that her white blood cell count was 217. A normal number is 10. They were told to take her to The Phoenix Children’s Hospital as they were experts in this kind of thing and that we would be admitted that day. By the time they arrived at The Phoenix Children’s Hospital and the test were all re-ran, her white blood cell count was now 255. They admitted her to the PICU and had to do an emergency procedure called leukopheresis to decrease her white blood cell burden. On June 12th, she underwent a bone marrow aspirate and biopsy. Her family was told that she has High risk AML and would need to start chemotherapy. She got an extreme case of mucositis and had to be placed on a PCA pump for pain. On June 22, day 10 of induction treatment, Jackie had heart and lung failure. She ended up back in the PICU with a breathing tube and was put onto ECMO (life support). This was the day before her 11th birthday. We were informed a few days later that she has FLT3 and NUP98 mutations, which each have a poor prognosis. Having two separate mutations of leukemia with poor prognosis is devastating news. The doctors said that if she does survive, it won’t be longer than 5 years. She managed to pull through life support and moved back to the oncology floor on 7-8-19. She had to relearn how to walk as well as how to do daily tasks on her own. So far she has went through 5 rounds of chemo, a week of radiation (twice a day) and had a bone marrow transplant on 10-18-19. Her oldest brother was a 1/2 match and was able to donate his stem cells to her. Her mom took a leave of absence from work without pay to be at her side and her Dad has used all of his PTO and FMLA. He had to return to work as he is now the families only source of income. Jackie was inpatient at The Phoenix Children’s Hospital for 6 months. She was released from Phoenix Children’s Hospital on December 12th and had to stay at the Ronald McDonald house for a month until she was finally able to return home. She had a bone marrow aspiration on 1-9-20. This will tell us what her Chimerism (the state in which donor cells have durably engrafted in the recipient. Full donor chimerism implies that 100% of bone marrow and blood cells are of donor origin) is and we are still waiting on the results. The last time we checked her Chimerism she was 89% her brother’s cells and 21% her own cells. Our goal is to get her Chimerism to 100% her brother’s cells. The plan is to continue doing a round of chemo every 4-5 weeks. A round of chemo includes daily chemo for a week. The doctors do not have a set protocol for Jackie. They had to make one up for her since her leukemia mutations are so rare. Therefore they don’t have a timeframe for her treatment. Jackie is a fighter! She is stronger than I ever thought she would have to be. It devastates us to watch her in pain and to have to go through so much.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.