Our story started with Kezia being diagnosed with Hodgkin’s Lymphoma in January of 2011. This was a tremendous blow to our family. Our whole life came to a shattering slow down. We learned quickly that Hodgkin’s was a very treatable cancer, so we dug our feet in and were determined to beat this cancer. After all, we had Saoirse, our beautiful 7-month-old baby to take care of.
Then the unthinkable happened. Our lives came to a complete stop.
Our wonderful daughter, Saoirse, woke up with two mysterious black eyes in early April. 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, that the black eyes could be from rubbing them, and that she probably had allergies.
We went home, not quite sure about that reasoning. We were not willing to accept this. The next day, we 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 tests. 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.
What? Neuroblastoma? What is that? The doctors let us know it’s a solid tumor, a childhood cancer and she needs to start treatment right away.
We were admitted into the hospital that night, 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 in a couple of months, 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 for 2 people in our family.
We had no option other than to fight with all our might, and we were determined to beat both cancers into the ground. We struggled emotionally, financially and mentally. Juggling everything was difficult. We had a lot of support and family helping. We did our best to make the baby's life as average as possible, and she really started to become a little girl rather than a baby. It was such a joy to see her discover new things each day. We did our best to introduce her to new experiences such as super fun outdoor activities like parks, zoos, play dates, gardens, hikes and concerts. It kept us going. We knew it was making her stronger. We spent as much time as we could together as a family, laughing and enjoying life every day.
Being a healthy family until now, to have two family members receive such diagnoses so close to each other has been a true shock. Kezia went into remission almost right away and in July 2012 it will have been a whole year officially in remission. Saoirse went into remission after her induction therapy and relapsed within a month.
Saoirse was killed by Neuroblastoma on December 13th, 2011 after a courageous 9 Month battle.
We hope to raise awareness for Neuroblastoma, as well as raise much needed funds for non-toxic and less toxic treatments and trials. All of the current drugs used in "standard" treatment are drugs developed over 30 years ago for adult cancers. We will change this.