It all started with a bump on her head that had popped up in late July early August. At first we didn’t think much of it, because kids get bumps and scrapes all the time. When it didn’t go away and became more painful Mom, (Tricia) made an appointment to go see the doctor. On Friday September 21st, 2012 Abby had the lump removed at the Allina clinic in Shakopee. When the doctor removed it she was not concerned. A biopsy was sent in and we still had no idea of how that lump would change our lives.
Abby is a very active girl. When she isn’t running around with the neighborhood kids playing, she’s active with football, baseball, boating, camping, sledding, and many other activities. She enjoys playing Barbie’s, cooking, reading, watching movies, snuggling with her four dogs or throwing a dance party. She is a very thoughtful girl and always thinks of others needs before her own. She is also a very funny girl and after spending some time with her you can’t help but smile and laugh.
On September 26th, 2012 Tricia got a call from the clinic saying they needed to see us immediately, this is never a good call. Abby was diagnosed with Acute Myeloid Leukemia (AML). AML is a type of leukemia that is usually found in adults and it is rare for people under 40. AML is a cancer of the blood and bone marrow-the spongy tissue inside bones where blood cells are made. Acute means that it is a rapidly progressing cancer. The next day we were off to Children’s Hospital in Minneapolis to get further testing and to begin treatment.
A Day in the Life of Abby:
When we were in treatment a day in the life of Abby looked very different. AML child patients require strong doses of chemotherapy. The chemo completely wipes out the bone marrow and patients require isolation, prophylactic antibiotics and antifungals and blood and platelet transfusions. A typical round began with 5-10 days of several types of chemotherapy followed by strict isolation in the hospital (confinement to one floor or sometimes just our hospital room) for 25 days or more. Abby would remain in the hospital until her bone marrow restarted and blood counts came back to a level in which they felt comfortable for us to take a mental health break at home. While we were home during breaks (7-10 days) Abby required daily flushes and heparin locking of her Hickman, sterile cap changes every 4 days and dressing changes at least every seven days. She had a G-tube placed in her stomach to administer medications or food when she wouldn’t eat. Abby took meds several times a day and sometimes required tube feedings. The treatment presented different challenges, including a blood clot in her right atrium and a very serious infection. Abby was brave during every step. During Abby’s last round prior to relapse she developed an Alpha Hemolytic Strep infection and spent weeks in the PICU. She was intubated, heavily sedated and on dialysis. Following that stay Abby had to learn to walk again. At home she was on tube feedings and took meds around the clock. We did her blood pressure at least three times a day and visited the clinic several times a week. Abby faced all of this with a fighting attitude. She missed her family, friends, school and her dogs while going through this treatment.
We were released from the hospital on February 26th, 2013. We were given the “all-clear, no more cancer” on March 25th, 2013. She had her Hickman and G Tube removed on March 27th, 2013. Her recovery from her fourth round was difficult with lots of physical therapy and clinic visits.
Relapse and Treatment 2013-present
Abby relapsed in September 2013 and began rounds at Children’s in Minneapolis in September 2013. Abby had a Hickman placed prior to beginning treatment. She endured three more intense rounds at Children’s before moving to Rochester in February 2014 for a transplant.
We moved to Rochester on February 10th and began pre-transplant chemotherapy. Abby was isolated in the transplant unit at the Mayo Clinic Hospital, St. Mary’s. Her chemo was more intense than during her rounds previous. She was very ill and required tube feedings well past hospitalization. Abby received her transplant on February 19th, 2014. Shortly afterward she developed early signs of Veno-Occlusive Disease, her liver was failing. She was put on a study as a compassionate use patient. Abby was moved to the PICU and was put on dialysis. She had a catheter placed in her neck and a PICC line placed in her arm. She recovered and was moved back to the transplant unit. We checked out of the hospital and into a place we rented in Rochester on March 23, 2014. We were able to move home to Shakopee on April 2, 2014. Abby had a weekly appointment at the Mayo Clinic and a weekly appointment with Children’s in Minneapolis. We continued to monitor her for fevers and signs of infection. If she spiked a fever of 100.4F or higher we had to immediately go to the Children’s ER for antibiotics and possible admission. Abby went home on tube feedings and meds several times a day, including an IV medication.
After a significant improvement in her health in July 2014 she started to decline in health in August 2014. She had to have a PICC line placed in her arm, was on IV fluids and had several appointments a week both at Children’s in Minneapolis and at the Mayo Clinic. Her liver and kidney functions were concerning, she had significant GI problems and she began to show signs of graft vs. host disease of her skin. We have been dealing with Abby being on oral steroids and topical steroids to control the rash on her skin. She remains on multiple medicines to protect her from infection. She is unable to return to school because of the medications she is on. Abby is doing very well considering all she has been through. If you were to ask her how she was, even on the darkest day she always said “good” or “fine.”
She is surrounded by her parents, her sister, grandparents, aunts, uncles, cousins and friends and even people we don’t know with constant support.
We encourage Abby (and ourselves) to celebrate every day. We live each day for the little things, for the moments that matter most. For her future she is currently hoping to be a chef, to make movies, to learn to drive, to get married and have kids and to be a mom.