Here are the things you will find in Marissa's Homepage
Other Sites Connected to Marissa's Story
Index to Marissa's Story
Part 1 of Acute Lymphocytic Leukemia
Part 2 of Acute Lymphocytic Leukemia
Part 2 of Marissa's Story
Marissa's Photo Album
Part 2 of Marissa's Photo Album
Jessica's Photo Album
Randy's Photo Album
Hi. I know that you don't know Marissa, but, she is a very special 6 year old little girl. She has conquered things that most people don't even have to deal with in their whole lives. You see, Marissa has leukemia. And I'm Marissa's mom, Tracy. I wanted to share her story in thehopes that it may help ease the burden of this horrific disease for even one family. And if we can do that by sharing out story, it's worth digging up all the long-forgotten pain that we went through in the beginning. I pray that this will bring hope to those people who think that this life we live in is not worth living, because I've seen from this little girl all that's good in life.
On October 28, 1995, Marissa came down with a nasty oral infection that she contracted from drinking fromt he same cup as her cousin. I, being her mother, took her to the doctor, and was told that it was something that would just have to run it's course. Two weeks later, as that infection was healing, Marissa came down with a very high fever of 102. Again, I took her to the doctor,and was told that it was a virual infection, for which her pedicatrician prescribed Amoxicillan. Marissa finished that anitbiotic, however, her fever didn't go down at all, and she had gotten worse. She was 2 years old, but didn't act very much like a normal 2 year old. She would be bouncing off of the walls one day, then all of a sudden, her fever would shoot up to 104 and she would be down on the couch for a few days. She had started complaining that her stomach, back, legs, and head hurt. When the Amoxicillan was gone, I again took her to the doctor, who again, told me that it was a virual infection, and this time prescribed Eurythimician. Marissa finished two weeks of this antibiotic, but was still not doing any better. On top of the other symtoms, she completely lost her appetite (which up to this point had been excellent). I called her doctor and told her that Marissa was not any better, and her doctor then called in a prescription for Augmentin.
During this time, I had been taking off of work to take her to the doctor, and luckily, my best friend and babysitter was taking excellent care of her. Marissa's doctor told me to give her Children's Advil for her fever "as needed". however, failed to mention to me that "as needed" should be no more than once every six hours, and that any more than that could possibly shut down her kidneys. The Children's Advil was touching the fever, and since I was told that she could have it "as needed" I was giving it to her every 3-4 hours. My boss at work was getting quite perturned at me for missing all of the work to take her to the doctor, along with normal doctor appointments for my other two children. And I am a single mother of these three kids, which meant that there was no one else to take them. I was it. If I didn't do it, it didn't get done. By this time,it was Christmas, and Marissa did nothing but sleep and complain about how everything hurt. She still did not have an appetite, and her "good" days were far less than her "bad" days. She was also becoming very pale around the center of her face.
Christmas came and went without the normal joy of a 2 year old on Christmas morning. Marissa was not the least bit interested in what Santa had brought for her. I again called the doctor, but was told that apparently this infection was something that would just have to run it's course.
Now, I am a normal mother, and was always told to trust the doctor's opinion on medical matters. So, when the doctor prescribed all of these antibiotics, I trusted that she thought or knew that they would help. And when she said that the infection would just have to run it's course, I trusted that she knew what she was talking about. But, seeing my once very active, healthy little girl just laying around on Christmas day, whining and crying because she felt like death warmed over, and not the least bit interested in any of her new toys, I began to doubt her pediatrician.
As that week went on, and into the end fo the year, my doubts grew even more. Marissa was not getting over whatever she had like the doctor assured me that she would. She was getting progressively worse!
So, on New Year's Eve, 1995, I called the medical exchange for Marissa's pediatrician. I spoke to the doctor on call for the evening, and told him that I wanted to take Marissa into the Emergency Room and have them look at her. I explained to him that she was completely listless, was continually running a fever of 104, was pale, no appetite, no energy, and that she had been this way for some time, even after 3 prescriptions of antibiotics. The on-call doctor told me that there was absolutely nothing that the Emergency Room could do for her that they couldn't do for her on their next business day. He told me to call the office on the morning of January 2 for yet another appointment.
So, at 8:00 a.m. on January 2, 1996, I called the doctor's office and made an appointment for later that day. I again took off of work early to take my baby to the doctor. When I told my boss that I was leaving early, he told me that if I had one more day of leaving early, I would lose my job. But, what could I do? My job or my sick daughter. Well.. needless to say, my daughter won hands down. I took her in to see her doctor once again. The doctor did the normal physical exam (listened to her heart, looked in her ears and down her throat) then told me that she was going to do a blood test on her so that she could definitely diagnose what kind of virual infection Marissa had. I remember thinking to myself, if you had the ability to find out exactly what kind of virual infection she had, why didn't we do this a long time ago. But, I was the good, compliant mother, and did not question the doctor. I was told that I could call the next day after noon for the blood test results.
The next day, January 3, 1996, I began calling the doctor's office at 11:00 a.m. I was told that the blood test results were not yet in, and to call back in an hour. I called back at 12:00 noon, and was told that they still had not come in, but to try back in an hour. I called my best friend to see how Marissa was doing, and was told that her fever had shot up to 105, and that it would not come down for anything. I called the doctor's office back at 1:00 p.m. and was told that the test results were still not in, but to call back in yet another hour! At this point, I completely lost all patience with the nurse on the phone. I began telling her that my daughter was worse than she had been the day before when she was in, and that if they did not have the test results in, I would just take her to the hospital where they were competent enough to diagnose whatever was wrong with her and help her feel better.
This seemed to actually get the ball rolling at the doctor's office, because this is when the nurse told me that I could bring Marissa back into her office immediately. I had already made up my mind that if the test results were not in the doctor's office when I got there I was going to take my daughter straight to the ER with or without the doctor's permission. (I guess I should tell you that due to the HMO that Marissa was covered by, the only way I could take her to the ER under her insurance coverage was with her doctor's permission.)
I called my best friend and instructed her to have Marissa ready to go when I go there and left a note on my boss's desk. I figured I would deal with work when the time came, but for right then, I couldn't. My best friend arranged for my other two kids, Randy and Jessica, to go to my mom's house after school that day, and she went with me to the doctor's office.
When the doctor finally called us into the examining room, she again did the same physical exam that she had done the day before (listening to her heart, checking her ears and throat), and gave Marissa two Tylenol, knowing that she had just had Children's Advil not 2 hours before. But, because her fever had not come down in over 24 hours, and had actually gone up to 105, she decided that Children's Tylenol would do it. The doctor then excused herself from the examining room. I thought that maybe.. just maybe she was going to get the blood test results.
When she came back into the room, she had a student doctor with her. Now, I have nothing at all against student doctors, however, the doctor started talking to the student doctor about Marissa as if I, Marissa, or my best friend weren't even there! She finally looked at me, and I suppose seeing the contempt for her on my face, she decided that talking to me might be a better thing to do. She sat down in front of me and told me that the lab had LOST Marissa's blood tests. But, she said, she had decided that she would send Marissa to the hospital for some other tests. She told me that the day before she had heard a heart murmur when she was listening to Marissa's heart (which she said absolutely nothing to me about)and that the murmur was much louder today than yesterday. She wanted a cardiologist to look at that.. and she wanted Marissa tested for a diseased called Kawasaki's Disease, which, if you're medically challenged like I am, meant nothing. But, I was told that it was a child's arthritic disease, which would explain the pain in Marissa's back, legs, arms, and head.
