“Things like that happen to other people”
I had believed that my whole life. I felt bad for them – the people whose families had sudden deaths of loved ones; families who had financial misfortunes. But “those things” didn’t happen to me. They didn’t happen to my family…because “those things happen to other people.”
But then they started happening to me – before the birth of my children, I had had several miscarriages. Until then, infertility didn’t happen to me – “those things happen to other people.”
In 2008 I was lucky to finally have a child of my own – a little boy (my Aidan), and he was my pride and joy. Instead of being happy, I was actually incredibly depressed – because I had endured so much to have him, that I was now afraid that I would lose him. But I reassured myself – “those things happen to other people.”
On New Year’s Day of 2009, I found out that our family would be expanding by 1. And from the moment that stick changed color, I knew that despite the little blue line, we’d be welcoming a little chubby and cuddly baby girl – My Angelina.
There were omens from the beginning – or maybe now that I’m looking back at them, I’m lining them up that way in my head. Maybe seeing even a hindsight trail of “breadcrumbs” makes me feel like I should have seen things coming. But the entire time I kept thinking that it would be fine because "those things happen to other people."
At my 12 week screen, my tests came back abnormal, indicating that there might be some type of birth defect. And then again at 20 weeks, we were alerted to a small tumor/growth in Angelina’s brain – another indicator of Downs. But I felt reassured when I went to a comedy night and a psychic (Artie Hoffman) told me that she would be fine, not to be scared because she was going to come “really early” but that she would be fine.
A few weeks later, my friend Jenn (who I had worked with back in college) emailed me about her son, Tyler. Tyler, had been diagnosed with a form of leukemia and was undergoing treatment at the Valerie Center at Newark Beth Israel Hospital – she had called me because she had hoped that my business (at the time Stroller Strides of Northern NJ, now Fit4Mom of Northern NJ) would help promote the walk, and possibly do a pre-walk warm-up. Which we did and it was great to see the support for those sick children.
The entire time I was at the event, I kept thinking how unfortunate that this happened to Tyler. How lucky I was that my son was healthy, and reassuring myself that Angelina would be healthy. I couldn’t imagine how parents figure out, or find out that their child has cancer, but I felt confident that I would never know because…”those things happen to other people.”
Needless to say, Angelina was born 5 weeks prematurely (as Artie had predicted) weigh an astonishing 6 lbs. 12 oz. and after 24 hours in the NICU was perfectly fine. Disaster averted – babies with extended things after all…"things happen to other people.”
But then the warning signs of something bigger began to surface. Two weeks after she came home from the hospital, we received the call. I knew that at birth they were required to screen your child for any number of genetic and other conditions. In fact, one of my friends in college had had PKU, a disorder they screen for. I was shocked when we found out that Angelina had congenital adrenal hyperplasia – a disorder of the adrenal gland (you’ll want to remember this for later). Most people with this disorder can be sexually androgynous, but Angelina didn’t seem to be displaying any symptoms. So we counted ourselves lucky – “those things happen to other people”.
And then the next 3 ½ years, Angelina was a normal, happy child. Angelina was an early walker, early talker, early to potty train (thank god), and just a great little girl. The only complaint our doctor had was that for a child whose mother was a personal trainer, and fitness professional her BMI left a little to be desired, and he reminded me about the childhood obesity epidemic. But she was happy and overall healthy and I wasn’t worried because “those things happen to other people”.
As Angelina was getting older, I decided that it was time for me to make a huge life change. After almost 5 years of marriage, Angelina’s father and I split up, and I opted to move out of the family home.
Initially the children seemed to react well to the separation. Until one day, Angelina turned to me and said “Mommy, my legs hurt, carry me.” And being that she weight over 40 pounds, and was perfectly capable of walking, I told her that she didn’t need me to. And she began to cry “I WANT DADDY!” And I told her she could cry, but that Mommy couldn’t carry her, and that she would see Daddy later.
Then, I started to notice she had a fever. For days I prepared for Aidan to get a fever, but he didn’t. Finally, while exchanging the kids, I mentioned it to Angelina’s father and he too mentioned that she had had a fever a few days before. A few days later I got a call from him, saying that he was on his way to school to pick Angelina because she had thrown up during school. My first reaction was panic, but not because I thought there was anything seriously wrong with her – I was worried because the following week we were scheduled to go on a cruise, and I was worried that if she had norovirus that they wouldn’t let her on the boat.
He took her to the doctor, who assured us that it was probably just a virus and we went on our way.
As we were boarding the boat, Angelina turned to her father and said “Daddy, my legs hurt, Carry me.” It was then that he admitted that she made this request often, and that when he didn’t she would cry hysterically for me. This was the beginning of the end.
The first day of our vacation was fine, and the second day borderline ok. But the fever began again, this time much worse. Instead of the low grade 99. – 100.1 it was over 103. She would sit-up at night screaming that her stomach hurt, and the most tell-tale sign? She had stopped eating.
By the final day of the cruise, it was evident to us that something was seriously wrong with her. Fever, abdominal pain, leg pain, loss of appetite. We went right back to the doctor.
In my heart, I knew what was wrong. They offered a wide variety of other possibilities. They even went as far to say that kids who display fevers of unknown origin, and other symptoms can just wake up one day and it’s all over. But I knew that wouldn’t be the case. I simply kept reassuring myself – “those things happen to other people”.
Finally, an older doctor in our practice decided that a basic physical exam was in order. And that was when he felt it.
It wasn’t for two more days that we got a diagnosis. We had taken her in for an MRI and a CT scan after a “fuzzy” ultrasound and a chest x-ray we never were told the results of. And when she woke up for the tests cranky, we took her home. I laid her in her bed, kissed her head and went out to the living room. A few minutes later my phone rang, “WHERE ARE YOU?” said the voice on the other end. It was her primary care doctor.
“We’re home,” I told him. And that’s when he said it – “I’m afraid I have some bad news. After reviewing Angelina’s test results from yesterday and comparing them to today’s scans – there is a definite malignancy.” I remember bending over – and sobbing.
He told us to go to the hospital, to the Valerie Center – one of the very centers we had helped to raise money for 4 years earlier, to meet the oncologist who had apparently been combing the hospital looking for us. And as we sat there talking with her, I kept saying in my head, “these things happen to other people, these things happen to other people.”
And then I realized – “those things don’t happen to other people.” Those things happen to people - to me - to anyone. Period.
Part 2 - Don't Google Anything. EVER.
To be continued...
~Danielle began her journey into motherhood 6 years ago and is blessed to be called "Mommy" by Aidan and Angelina. During that 6 years, Danielle has been honored to share her journey and the journeys of other moms as the owner of Fit4Mom of Northern NJ (fitness for all stages of motherhood). In May of 2013 Danielle's life took an unexpected turn when Angelina (at the time 3.5 yrs old) was diagnosed with Stage IV Neuroblastoma. Since then Danielle has become the "General" for Angelina's Army, which will be hosting fundraisers to help Angelina and Families battling this difficult cancer. You can learn more about Angelina and Angelina's army by visiting www.angelinasarmy.com.