Mark Hill Memorial Golf Outing
June 02, 2017
White Hawk Country Club - Crown Point, IN

 

 

 

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ReeseReese

In late October of 2008, Reese woke up not feeling well one Tuesday morning, so my husband took her to the pediatrician who diagnosed her with a double ear infection. We were told that since the antibiotics should start clearing up the infection by Thursday, it was OK to proceed with our planned trip to visit family in Arizona. Shortly after arriving, Reese became fussier than usual and was not eating much. By Friday morning, which happened to be Halloween, she was not having any wet diapers and just didn’t look well. We took her to a local pediatrician who, after examining Reese, directed us to a children’s ER in Mesa. By the time we got there, Reese was extremely lethargic and very pale.

After exams, ultrasounds, and blood draws, an oncologist came in the room and introduced himself. I remember thinking, “Why the heck would an oncologist be coming to talk to us?” He then told us he suspected Reese had leukemia due to a very high white blood cell count. She was taken for an ultrasound and a bone marrow biopsy where it was confirmed that she had Pre-B Infant Acute Lymphoblastic Leukemia with MLL gene rearrangement. She was admitted immediately into the PICU where she was given blood and platelet transfusions. The next day, a central line was placed and chemotherapy was started.

We learned that unlike childhood leukemia, Infant ALL is very rare and very difficult to treat due to the MLL gene rearrangement. She was given a 20-45% survival rate, due to her young age (17 weeks old). After a week of treatment, we took a medical flight back to Chicago, where she was treated at Children’s Memorial Hospital.

Reese TreatmentReese underwent several phases of intensive chemotherapy over the course of seven months. All of her treatments were inpatient procedures as Infant ALL is treated with very high doses of chemotherapy. In May, 2009, Reese underwent a preparative regimen for a stem cell transplant that included radiation and more intensive chemotherapy. She had an unrelated cord blood stem cell transplant on May 26, 2009.

There were many bumps in the road; fevers, isolation stays at the hospital, side effects from the chemo and radiation, NG tubes, countless sleepless nights, home health visits, etc. We were so confused at first and had trouble understanding anything the doctors were saying to us. As we got further into the journey, words speaking “cancer” became second nature. Within a few weeks, we learned how to care for Reese’s central line, administer IV medications, insert an NG tube, pack for the ER in 2 minutes flat, where to find the best take-out within walking distance from the hospital, and how to take this roller coaster one day at a time.

Today, Reese is a normal, active, loving, and sassy two year old. Besides being a little small for her age, you would never believe all she has been through. This journey has been exhausting in every way and we have cried many, many tears. Along the way, though, we connected with several other “cancer families” who were our lifeline and a tremendous support to us during Reese’s treatment. It was so comforting to be able to call, e-mail or visit with other parents who knew what we were going through and could answer questions our doctors couldn’t. These were the Moms and Dads who had been in the trenches and could relate to our journey in a way our friends and family could not. There is hope and you are not alone.