Maggie

Age: 2 ½ years

Diagnosis:

CML – Chronic Myelogenous Leukemia

Age of diagnosis: 2 years (April 2008)

Briefly describe the diagnosis in layman's terms:

Chronic myeloid leukemia (CML) is a disease in which too many immature white blood cells are made in the bone marrow. In the first stages of CML, patients show few signs of illness. In the end, however, millions of abnormal, useless white blood cells accumulate, preventing production of normal blood cells and blood-clotting platelets. Patients suffer from infections, anemia, uncontrolled bleeding and other complications that lead to death.

CML is relatively rare, with fewer than 5,000 people diagnosed each year in the United States, with most cases in adults. It's very rare in children, who account for only 2 percent of CML cases. Because there are no known risk factors, there is no known way to prevent this disease. 

Names of doctors who have treated the patient:

Dr. Jessica Boklan, Keri Greene (Child Life Specialist in Clinic), Dr. Wood, Dr. Henry, Dr. Dana Salsburg, Child Life Specialists, Hematology floor, "A", and Ginny Stiller

Favorite hobbies and/or activities:

Swinging, riding the train ride at Desert Breeze Park, reading, coloring, doing stickers, blowing bubbles

Favorite things…:

Ice cream, Oscar the Grouch, Mr. Noodle on Elmo and Maisy the mouse

How has your illness affected your life:

In every aspect. It has changed our perspective, it has made us closer as a family, it has re-prioritized our days and our lives. We have been blessed with people that really empathize with our situation and help in doing things, just showing up and taking the kids, taking Molly on a play date, bringing Molly home from school, making and delivering meals for us, the small things that really do mean the most.

What was your longest hospitalization? And how often do you continue to come to PCH?

April 8 – 29, 21 days. Then weekly at the clinic and now monthly with a bone marrow biopsy every three months until the one year mark.

What is your favorite thing about or service offered at Phoenix Children's?

The support for each member of our family. From the Emily Center for research and literature on Maggie's treatment, disease, medications, to the Child Life Specialists who delivered books and games to Maggie while she was in isolation at the hospital and couldn't play in the playroom, to the little Tykes cars and red wagons to transport the kids or let them play in the hallways.

What is the most difficult aspect of being hospitalized or your treatment?

Maggie had a central line/port put into her chest on the Friday we were in the hospital. The entire process of fevers, ultrasound finding masses on her organs, to a diagnosis of leukemia, was only a few days, and then we started procedures. Having her central line in was challenging all day every day. She was good about not playing with it, but it couldn't get wet. We had to flush her "tubbies" every day and change the dressing on it once a week and whenever it got wet. Keeping any kid dry is hard, and Maggie really likes to eat, slurp and inhale food. She has always been a messy eater, which is fine for us, but with a central line in, it raised our anxiety levels tremendously until it was removed in mid-June. Plus it was a physical reminder to Maggie of her leukemia, where now she can work through her feelings when they come up, not every day fighting with her tubes to get her shirt on or take a bath. For Molly, it has been challenging for her to always feel included, get enough positive attention, and to understand what's going on with Maggie and leukemia. Needless to say, both Molly and Maggie know many medical terms that other children don't know.

Has it affected your day-to-day life? If so, how? 

For Mom and Dad, it has opened up our roles as parents and added caregiver, pharmacist, nurse and anger managers. For Molly, having Maggie gone in the hospital was the hardest time for her. I found her a few times looking around the house for Maggie like she couldn't find her. For Morgan, sad as it is, he won't know any different as he was only two months old when this all started. He was passed from family to friends, for weeks, and is definitely a trooper for that! For Maggie, she deals with it daily and sometimes not for days. We had to go to the pediatrician's office on Saturday, and they had to do a procedure with a needle. Her anger and fear immediately came back and this week we have been dealing a lot with that again.

Is there someone, or an aspect of your hospitalization that really stands out in your mind that would help others understand the importance of Phoenix Children's?

During our hospitalization, we would say the staff. Since we have been in the clinic it is the clinic staff, Dr. Boklan and Keri Greene the Child Life Specialist that stand out. Maggie will randomly ask about Dr. Boklan or Keri and many times I hear her role playing that she is calling Dr. Boklan or talking with someone from the clinic. We have been very blessed that Maggie isn't afraid to go to the clinic and will occasionally ask how many weeks or days until her appointment. I think she feels like it a special place for her and it is her doctor's office.

Is there something that your illness has changed your philosophy of life or how you look at things?

It has really helped us be more in the moment. We are enjoying these days more as they come and really enjoying the different stages for each child. We have a greater sense of empathy as to their behavior and try to better understand their point of view. We definitely need work on this, but we are trying! We also take a lot more pictures.

Do you listen to KMLE Country 108? If so, is there a favorite country song?

Maggie and Molly really like Tim McGraw's song, "Last Dollar (Fly Away)" and they enjoy singing with the girls at the end of the song.