KATIE'S WISH - Katie's Diagnosis Story

Katie's Diagnosis Story

It all started around Thanksgiving in 2002 when two-year-old Katie took a tumble off of a step stood while washing her hands at the bathroom sink. She complained that her back hurt and she refused to get up off the floor. I immediately took her to the emergency room to have her checked out. When we got there, Katie's back pain had subsided. They didn't run any tests, but the doctor did question why Katie had so many bruises on her legs.

For the next few weeks leading up to Christmas, Katie began experiencing more and more back pain. It was mild discomfort at first, but got worse with each day. During those weeks, my husband, John, and I took her to ERs at two different hospitals for various tests, x-rays, ultrasounds, and scans. We thought the pain was related to her fall she had before Thanksgiving. We took her to her pediatrician several times, an orthopedist and a urologist to see if someone could figure out what was causing her pain.

We were putting all of our trust in Katie's pediatrician -- after all, she was the one with the medical degree and her own practice. I asked her if we should go to the Children's Hospital of Philadelphia instead of the local hospitals, since they weren't finding anything. Scowling, her pediatrican said, "No."

The closer we got to Christmas, the worse Katie was getting. She was extremely pale, her pain was so severe, she had stopped walking and was now refusing to eat. My husband and I demanded answers! I asked Katie's pediatrician if she would do a blood test to see if that would show anything. Her pediatrician said she didn't want to put Katie through anymore tests. I was pregnant with my second child at the time and Katie's pediatrician told John and I, "There is nothing wrong with her. She just wants attention."

We knew there was something wrong with her -- seriously wrong -- we just didn't know what it was or who to go to! With the holidays in full swing, no one wanted to help us!!

I called the orthopedist and asked if he would do a blood test. It was nearing the weekend before Christmas, Katie had her blood drawn at one of the hospitals where she had previously had tests done. The day after the blood test, I called the orthopedist to find out the results. He had gone on vacation and would not be available until after the new year. I called the hospital to see if someone there could tell me about the results. The hospital said they weren't able to tell me anything over the phone and they would forward the results to Katie's pediatrician.

I called the pediatrician's office numerous times that Friday before Christmas to get answers about the blood work. The hospital had not sent the results of the blood test to the pediatrician, but they did send the results to her bone scan. There was some concern about the large area that was "lit up" from the contrast dye, and they thought Katie had a severely distended bladder. I was told by Katie's pediatrician, it would take over a month to get an appointment with a urologist and just to give Katie some Motrin and wait until the holidays were over. I was furious! Katie slept most of the days away and was constantly moaning and complaining that her back hurt. She couldn't wait three-weeks!! The pediatrician said that "because of the holidays, no one would want to see her."

First thing Monday morning (the 23rd) I got a call from the pediatricians office. They finally got the results of the blood work and bone scans, and they were able to get Katie an appointment with a urologist associated with CHOP in Exton at 5:45pm that evening, but before we went they needed ultrasounds done. In the meantime, the pediatrician signed off on both results and faxed them to the urologist. She made no mention that there was anything unusual about the blood work. They set up the ultrasound for 2:00pm at Abington Hospital. John left work at 12:00pm and was home by 1:00pm. We immediate left to go to Abington. We left Abington at 4:00pm with the ultrasound films and headed to Exton.

We got to the urologist office at 5:30pm. He met with us right away and said that Katie's bladder was fine but her blood work was abnormal. He said that it wasn't his area of expertise but it looked like it could be Leukemia. He told us we should go directly to Children's Hospital to have a complete blood count done (CBC) again and a smear. He was going to call ahead and let them know we were coming. We called Katie's grandparents on our way to Children's Hospital.

At 7:30pm we got to the ER at Children's Hospital. We finally got through triage at 9:30pm (my parents showed up then). They put us in a room and we waited until 10:30pm for someone to come in and get a blood sample from Katie. They said it would take an hour for the results. My parents went picked up some food for us (none of us had eaten since breakfast). It was after midnight and I told my parents to go home and we would call them when we heard something.

Near 1:00am on the 24th, two doctors (an oncologist and a resident) came in and said they would speak to us in another room. We knew then it was bad news. They told us they suspected it was cancer and possibly Leukemia, but they needed to run some more tests to be sure. We called our parents while they hooked Katie up to an IV. They admitted Katie and we got to the semi-private room around 4:30am. We tried to get as comfortable as possible with John laying in the bed with Katie and me in a chair.

At 7:00am, the same doctor (oncologist) that spoke to us a few hours before, came in to wake us and prepare us for what tests they were going to do. 10:00am Katie had a bone marrow aspiration (they remove some bone marrow in her hip) and a spinal tap (they remove spinal fluid). He said we would know exactly what the diagnosis was by 5:00pm.

A little after 4:30 in the afternoon, we were once again called into another room to meet with two oncologists. Katie was diagnosed with standard risk, acute precursor B-cell lymphoblastic leukemia (pre-B ALL) on Christmas Eve 2002, a month before her third birthday. Fortunately, it had not yet spread to her spinal column or brain. They immediately went into the details of what needed to be done and consent forms for us to sign. They moved Katie to a private room, started her oral chemotherapy that evening and began flushing her kidneys to remove the toxin build-up from the cancer.

Before we went to sleep that night, Katie mentioned that Santa wouldn't know where she was. I felt awful that we had no presents to give her. Christmas morning we woke up and "Santa" had left a small pile of gifts for Katie. The surprises and gifts from people we hadn't met before were pouring in all day. Even Santa came to visit and had his picture taken with Katie. She had lots of family visiting that day, too! Katie was very happy that Santa found her.

From that point on the days at the hospital started to blend together. Katie was still complaining of back pain a week into the chemotherapy. The docs thought that the pain would have subsided by then. They shot some x-rays and found she had compression fractures in three vertebrae. The combination of the leukemia and the chemotherapy caused the compression fractures in her spine. She was immediately fitted with a back brace and started physical therapy. Katie was unable to walk for several months.

The goal was to get Katie into remission within 28 days of diagnosis. Katie went into remission within a weeks time which made her an "early rapid responder". Her chemotherapy would continue for 2 years and 2 months. We were told to imagine that leukemia was a tree. If you cut the tree down to the ground, getting rid off all that you can see, there could still be something left that you can't see. The initial part of treatment and getting Katie into remission was like cutting down the tree. The remaining 26 months would be spent getting rid of all the roots underground -- makig sure there was nothing left to grow.

During the 26 months of treatment, she received daily chemotherapy and anti-leukemic drugs (oral, IV pushes and IV infusions, muscular injections), 5-10 day steroid pulses every month, monthly spinal taps with chemo to her central nervous system and brain, bone marrow aspirations, and several blood transfusions of packed red blood cells and platelets. She experienced many unpleasant and painful side effects from the chemotherapy and she was hospitalized many times due to infections and low immunity. We had to keep her isolated from other children because her immune system wasn't able to fight germs.

Had we chosen not to treat Katie, she would have died within two months of diagnosis. Katie finished her chemotherapy treatment in February 2005 and is now a 1-year cancer survivor. Although Katie has been in remission since New Years Eve 2003, we still worry that her leukemia could come back. She continues to go monthly to the oncologist for blood draws and tests.

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Visit our JOURNAL for details of Katie's treatment.