We hope to raise awareness to Neuroblastoma and Childhood cancer in general as well as raise much needed funds for non toxic and less toxic treatments for childhood cancer. All of the current drugs used in "standard" treatment are drugs designed for adult cancers over 30 years ago. We aim to assist in changing this. I promised my daughter 1 hour before she passed that I will do what ever I can to help others not suffer and to find a cure. Here is the beginning of our Story....
My Wife 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 Kezia was pregnant, she had a swollen lymph node show up in her neck. She had had them swell before, usually during allergy season, and figured that because of constant congestion, it would go away once she had the baby. It didn't go away, so she started the process of having it investigated in September of 2010. After multiple tests, consults with two surgeons, and finally a biopsy, she was told that she had Hodgkin's Lymphoma in January of 2011. (actually the day of the biopsy the surgeon came to me while Kezia was in recovery and told me that the immediate preliminary tests showed cancer, so I had to figure out how to tell my wife she has cancer) The news was amazingly unexpected, and we both felt pretty numb for a while. There were a lot of tests and scans in the next week to determine the stage of Kezia's 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. I was not willing to accept this. The next day, I 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 about 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. Kezia mentioned to one of the doctors that she had hernia surgery at the end of March, and we 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.
As we work through our chaotic scheduling nightmare for the time being, we are starting to settle into our new normal. We have no option other than to fight with all our might, and we are determined to beat both of these cancers into the ground. We are making the baby's life as average as possible, and she is really starting to become a little girl rather than a baby. It's such a joy to see her discover new things each day, and it keeps us going, knowing that she will be so much stronger when this is all over. Everything is up from here, and we are spending as much time as we can together as a family, laughing and enjoying life every day.