It all started with a fever and a backache. Who would ever dream that those vague symptoms could be cancer?! In December of 2006, Moriah had strep throat. No big deal; her doctor treated it, and that was that. A few weeks later she was complaining of back and hip pain and she had a low grade fever, and we returned to the doctor. Looking for a sterile cyst in her hip socket, he ordered an x-ray that showed she was constipated, which can certainly cause pain in a small child. Again, we treated the issue and that was that. Three weeks later, we were back at the doctor's office for more back and hip pain and more low grade fevers. This time he ran blood tests, looking for an answer. The results came back with a past infection of Parvo-virus, or Fifth Disease, and showed that she was anemic. Okay, if it was recent, that could cause pain and the fever. He chose not to treat the anemia until we could find a cause. Another three weeks passed and this time the doctor ordered more blood work, looking for Lyme disease due to the same symptoms. Test results were negative.
The doctor admitted that he just didn't know and that his best guess was that she had Juvenile Rheumatoid Arthritis. He referred us to a pediatric rheumatologist, who ordered a whole battery of tests, including an abdominal ultrasound. Most of the test, with the exception of the ultrasound were completed by Moriah's initial appointment, but the doctor couldn't conclusively prove or disprove the theory of JRA. We set another appointment for the same day as the ultrasound, and continued to just wait.
April 10, 2007 we went to the hospital for the ultrasound. A tech did the test, and then paused over Moriah's left side. She looked, and looked again. Then she made a comment how ultrasounds are sometimes fuzzy and unclear and she wanted to have the doctor take a look. The doctor came in and looked at nothing but Riah's left side. He also gave me the "ultrasounds are a great tool, but they do not give a sharp image" and said they were sending her immediately for a CT scan. We weren't to worry about her appointment with the rheumatologist; they would let her know what was going on.
We headed to another department, and after having had nothing to eat or drink all day, Riah drank the CT contrast with no problems at all. She balked a bit when they put the IV in, but not moreso than you'd expect from a 6 year old. When they were done, they sent us up to wait in the waiting room of the rheumatologist; she would see us and give us the results. That was an agonizing wait.
What started with an ultrasound at noon turned into still waiting at 5 pm. When the doctor called us in, she explained that they found a mass in Riah's left adrenal gland. I then expected to hear the word "endocrinologist" but was horribly shocked when, instead, she said she had made an appointment with the pediatric oncologists next door for the very next morning. Then she asked if we were familiar with oncology. After explaining that we were well acquainted with the term after my father's short fight with metastatic glioblastoma, we went home full of anxiety and worry.
The next morning we met with one of the pediatric oncologists at Lehigh Valley Hospital. After examining Riah and some discussion, she let us know that she had taken the liberty of making an appointment for us the next morning at the Children's Hospital of Philadelphia. There were a couple of other things it could be besides neuroblastoma, but they had to run some more tests to be sure.
We drove to Philly, and waited and waited and waited in CHoP time. If the shortest measurable amount of time is the time it takes a New York City stoplight to turn green and the person behind you to honk, the longest measurable amount of time is waiting at CHoP, not knowing if your child has cancer. After Riah's bloodwork came back, they decided to hold us overnight and immediately run more tests the next day.
Friday, April 13, 2007 dawned full of anxiety. Moriah went for a bone marrow biopsy. Pathology took only two hours to come back, telling us that 80% of the bone marrow they took was cancer instead of bone marrow; neuroblastoma, to be specific. They sent us home for the weekend, telling us to return the next week to start treatment. They asked if we wanted to know the odds, but we declined, knowing we couldn't cope with more at the moment. The doctor sadly said, "That's for the best. Each child is either 0% or 100%." and the expression on her face clearly said which she believed Riah would be. Little did she know our Wild Riah Child!
An MiBG scan revealed that in addition to the primary tumor in her left adrenal gland and a secondary tumor near her pancreas, the cancer had spread to Moriah's pelvis, femurs, shoulders, and part of her spine. It was a terrifying thing to be confronted with. Giving up wasn't an option, though. We were all going to fight this thing, although Riah was in for the trial of her short life.
After multiple rounds of high dose chemo, they did a stem cell harvest for later transplant. Then more high dose chemo. Then surgery to remove what was left of the tumor. Then even more, even higher dose chemo and her first stem cell transplant. Next was one month of isolation at home while her new bone marrow took hold and grew. Then back to CHoP to kill it off again with more high dose chemo and total body irradiation, only to transplant her stem cells back again to regrow her bone marrow. Home again, it was time to mop up with spot radiation to the tumor bed.
Here we are in 2013, nearly 6 years from the date of diagnosis, and over 5 years from Riah's first clear scan. She has long-term side affects of treatment, but she's here and she's still considered No Evidence of Disease! The credit for this goes entirely to you, generous donor, who has given money to support pediatric cancer research. 20 years ago, neuroblastoma was still a death sentence. Now, those research dollars have raised the odds and more and more kids like Riah are here to prove how much good that can do.
Thank you. Thank you for your donation and for saving our daughter's life.