My husband Mike and I met in college in Chicago. We dated for a few years, and were married in June of 2008. We followed the "typical path," buying a house about a year after we got married, settling in and planning to have our first child. I was pregnant a few months later, and our beautiful daughter, Saoirse, was born in June of 2010. Everything seemed to be going perfectly.While I was pregnant, I had a swollen lymph node show up in my neck. I had had them swell before, usually during allergy season, and figured that because of my constant congestion, it would go away once I had the baby. It didn't, so I started the process of having it investigated in September. After multiple tests, consults with two surgeons, and finally a biopsy, I was told that I had Hodgkin's Lymphoma. The news was amazingly unexpected, and I felt pretty numb for a while. There were a lot of tests and scans in the next week to determine the stage of my disease, and chemotherapy to schedule and work out. It was so much so quickly that nothing really had a chance to sink in right away. We were spending our time in doctors' offices, waiting for test results, and trying to figure out how we were going to schedule everything. It seemed so chaotic and mysterious. Like we were living someone else's life. But we figured out a schedule, and things became routine. It became our normal, and we were comfortable knowing that things were going well, and that everything would be done by the end of July.
Early in April, Saoirse woke up with two mysterious black eyes. She had bumped her head on a wall the week before, so we immediately thought she might have some sort of a head injury. We took her to the emergency room, and the mystery began. The first ER doctor thought that she didn't seem to have any kind of indication of a head injury, and that the black eyes could be from rubbing them, and that she probably had allergies. We went home, not quite sure about that reasoning. The next day, Mike took her to our pediatrician's office and saw a new doctor, who took one look at her and immediately sent her into the ER at Children's in Boston. The doctors there ruled out meningitis, and didn't seem to think she had a head injury, but thought maybe the black eyes were a delayed reaction to when she had bumped her head now a bit over a week before. They told us to watch her and if her disposition changed at all, or if something else seemed different, to come back down. For a bout a week Saoirse seemed to go up and down, getting better one day, and going back to being overly cuddly and sleepy the next. The swelling in her face didn't seem to be getting any better, and she certainly didn't seem like herself. We decided to take her back into the pediatrician's office to see if they could find anything else. The doctor that saw her didn't like the way that her head and face looked and sent us for x-rays and blood work, and referred us to a neurosurgeon back at Children's. We had the x-ray done, and nothing showed. We had an ultrasound done at Children's for the neurosurgeon, and it showed swelling, but no good reason for it. The neurosurgeon thought maybe she had an orbital fracture above her right eye, causing the bruising and the swelling, and he sent us for a CT. Saoirse had eaten that day, and could not be sedated, so we scheduled to come back two days later. The next day, Saoirse's blood work came back, and showed that her hemoglobin was very low, and dropping rather rapidly. The pediatrician sent us into Children's for an emergency CT, believing that she might have some bleeding in her head that hadn't shown up on any of the other testes. In the ER we waited for her scan, they drew her blood, and we talked to many doctors and residents about her now 3 weeks mysterious ailments. Everyone seemed puzzled. No one could see how a relatively minor bump on the head, which produced no immediate issues, could have stemmed into all of these symptoms. I mentioned to one of the doctors that she had hernia surgery at the end of March, and I wondered if she could be bleeding somewhere in her belly. That was the first time someone touched her belly, and that was when the doctor felt a mass. After an ultrasound of her belly we were told that she had what looked like a malignant tumor called Neuroblastoma. We were admitted into the hospital immediately, and testing and chemotherapy were started the next day. We were shocked, dismayed, upset, and numb. We couldn't believe that this was happening to us for a second time, and so soon. Again we went through the motions, testing, waiting for test results, and scheduling the now logistical nightmare of chemotherapy and doctors visits. But a new normal is being discovered, and soon, I'm sure, we will all know nothing different.
After six months of chemotherapy, I went into remission in September. We felt the baby was soon to follow, and after five months of treatment, we were told that she had no evidence of disease by her doctors at Children's Hospital Boston. Our joy was short lived, as an additional test showed disease in her bone marrow just two weeks after being initially cleared. Sadly, after six weeks of battling aggressive recurrent tumors, and trying to get ahead of her relapsed disease, Saoirse lost her battle with Neuroblastoma on December 13, 2011, after nearly eight months of fighting hard. We are devastated to loose our little girl, and we are looking forward to fighting for other children and families in the future. We will be striving for early detection, less toxic and less invasive treatments, and wonderful quality of life for the children AND their families.