On Friday, June 8th, 2007 our lives were changed forever. We received the phone call that is every parent’s worst nightmare. Our pediatrician was on the phone telling us that our beautiful little girl, Kayla, who just celebrated her 4th birthday in April, had Leukemia and we had to get to Children’s Hospital within two to three hours. We immediately took her to CHOP and were told to sit and someone would be right with us. A few minutes later, a nurse came and brought us to a room where we were greeted by an Oncology doctor.

It was confirmed that Kayla had High Risk Acute Lymphoblastic Leukemia (ALL) and that we would be staying at CHOP for the next few weeks. Everything else from that moment on is a blur. We spent the next 35 days watching our little girl slowly begin to look like a cancer patient. Although they were able to get her into remission by the third week, she was already losing her hair, getting sick from the chemotherapy and had lost 11% of her body weight. Due to her extreme weight loss, a feeding tube was placed to allow her the nutrition she needed.

On July 11, 2007, we were finally able to take her home. We were told that she would be in treatment (mostly outpatient) for the next 2 ½ years. The next several months were very hard on her little body. Being treated as an outpatient, we spent three to five days a week at clinic. Although the chemotherapy she was getting was in very high doses, she seemed to tolerate it pretty well. She continued to keep the feeding tube in for 10 months, longer than we had hoped. It was however much easier to give her medicine this way and we knew she was getting a good amount of nutrition. We were told that December and January would be particularly hard months for her and to expect possible hospital admissions.

On January 12,  2008, Kayla had some belly pain and a low grade fever. Fevers are what the doctors worried about most, because of the possibility of infection.  We took her to CHOP, ER and were sent home a few hours later with a diagnosis of "suspected constipation". We were told what to watch for. The next day, she continued to have severe belly pain and a low grade fever. We went to the ER again that night and were admitted. After several blood test, ultrasounds, a cat scan and an MRI, which were all new to us and Kayla, they were able to come up with a diagnosis. Kayla had a very rare side effect called VOD (Veno Occlusive Disease) caused by of one of her chemo meds (6TG). This side effect occurs in approximately 1% of patients. We spent the next month in the hospital while she worsened and required oxygen and was unable to get out of bed due to the size of her stomach. VOD causes the belly to fill with fluid. Her right lung started to collapse and had to be drained. She started to improve after this was done.

We were discharged from the hospital on February 7, 2008. A few days later we went to clinic for a follow-up. Her counts came back great and we were able to start the next and last phase of chemo called maintenance, which continued for two years. Kayla completed chemotherapy treatment on October 2, 2009 and remains cancer free! Kayla is seen at the Oncology Survivorship Clinic at CHOP and will "graduate" to yearly visits in October 2014.  She is a happy, healthy child who will be attending middle school in the Fall. Kayla, now 11, has two siblings, Shawn, 21, a college senior and Ava, 8, a third grader.

Update - May 2016

Kayla is followed by the Oncology Survivorship Clinic at CHOP for yearly check-ups. She is a happy, healthy girl who just turned 13 in April! Kayla is in 7th Grade and has two siblings, Shawn, 22, a recent Penn State grad and Ava, 8, a 4th grader who loves gymnastics!

Danzi Family (Susan, Jeff, Shawn, Kayla and Ava)
Updated: May 2016