The story of a sick child: A Neuroblastoma Diagnosis

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A long time ago, I began writing about my experience with my son’s illness. I didn’t realize how difficult it would be to relive that experience through writing about it, which is why I hadn’t written the next part of the series. However, after reading about Lacey Holsworth, I couldn’t put it off any longer. I saw the link to Lacey’s story in an email newsletter and something sparked within me. I quickly scanned the article to find out what type of cancer had struck down this little girl. And there it was: A neuroblastoma diagnosis.

The article referred said neuroblastoma is a fetal-nerve cell cancer. I knew all about that. Because doctors gave my son a neuroblastoma diagnosis when he was 2.

Neuroblastoma

I explained what it was like when my son was diagnosed with neuroblastoma. It was a surreal experience, to say the least.

I had to make it through the weekend with my son, waiting for his surgery to remove the neuroblastoma tumor from his abdomen — if that was possible. I don’t remember a whole lot from that weekend, other than worrying and crying and worrying more. Nurses who knew Tony from his previous stays (he’d been a sick kid for months) stopped by his room, expressing their sympathies, some crying. That was troublesome. After all, I was isolated from the outside world, from information, and only knew what the doctors were telling me.

A social worker visited once or twice — I think — to see how I was doing, to offer support. My head was spinning, I had no idea how to feel, how to act, what to say. Doctors stopped by, slowly providing information that made the situation seem more bleak. I don’t think we had any visitors that weekend, but I can’t recall with certainty. I don’t know who was taking care of my other kids who had gone home with their grandparents — the extent of my thought process revolved around the concept of how they would live their lives if their brother died. I thought about how the Easter suit he had worn not so long ago might turn out to be the suit he would be buried in.

By the end of the weekend, I had learned that my son’s neuroblastoma diagnosis was not at all optimistic. The neuroblastoma tumor was the size of a grapefruit, or a softball, depending on which doctor explained it. It had attached itself (this was how they explained it in simple layman’s terms) to one of his kidneys, his liver, his pancreas, and his spleen. It was bad. They were unsure if the surgeons could remove the entire tumor, and they believed that they would have to remove the affected kidney, as well as portions of other organs affected by neuroblastoma. Tony might need a blood transfusion.

By Monday morning, the day of his operation to remove neuroblastoma, Tony had lost weight. His skin had a grayish hue, and his eyes were sunken. He was unable to eat or drink anything without vomiting and explosive, watery, bright yellow diarrhea. It was hard to witness. It seemed like there was no way he would even make it through surgery, let alone survive his neuroblastoma diagnosis. I was scared more than anything.

My parents and my brother, as well as my father’s best friend, arrived early, to stay with me throughout Tony’s neuroblastoma surgery. We had an agonizing wait before he was even taken into surgery, as he was pushed back toward the end of the schedule due to the complexity and the time involved. Around 2 p.m., it was time.

A I DuPont Hospital for Children Neuroblastoma Diagnosis
We remained on benches in a long hallway outside of the surgical suite at A.I. duPont Hospital for Children. Hour after agonizing hour passed by. About five hours into his surgery, one of the surgeons emerged. Oh my God, oh my God. What would he say? Did he make it? Would he make it? Did they get it? What? WHAT?!?! I had to know and, at the same time, I didn’t want to know. There was some strange sense of security with not knowing. At least I didn’t know any more bad news.

The surgeon sat down next to me and began to talk. He explained that all of the imaging that they’d done — his CAT scans and ultrasound — were on display in the operating room. That way they had full view of the extent of the neuroblastoma tumor, how it was spreading, the organs it affected. After all, the tumor spread by the time they’d made the neuroblastoma diagnosis. The surgeon then explained how the tumor looked when they opened Tony up. It was completely contained and was not affecting any organs other than the adrenal gland where it was located. The images hanging in the operating room simply did not match what was inside his abdomen, the surgeon tried to explain.

I was clearly confused. The surgeon then said, “It’s not something we generally say, but if there’s a word to explain what happened, I’d have to say it was a miracle.” (OK, that might not be word for word, but trust me when I say that is the statement to the best of my recollection. When someone tells you something like this, it’s not something you forget.) We didn’t get to see Tony for about two hours, at which time we could go into his room in Intensive Care. There were so many tubes and wires, it was a difficult thing to see.

Neuroblastoma Diagnosis Childhod Cancer

Tony remained in a private room for the rest of the week. He was in good spirits and didn’t cry; he barely seemed to be in pain. He had a central venous catheter, which was going to be used for chemo, which we had been told would start within the week. Surgeons had also taken a bone marrow sample, to determine if the cancer had spread to his bone marrow. By the end of the week, we got the results: Negative! Five days after his surgery, his CVC was removed and Tony was sent home with a clean bill of health, the first patient to survive a neuroblastoma diagnosis at A.I. duPont.

That “miracle” that the surgeon referred to? I didn’t know what to make of that. I did know that upon hearing about the neuroblastoma diagnosis, a close family friend had prayed novenas in the name of Padre Pio, now Saint Pio, a Capuchin priest he had encountered while in the military. Padre Pio was known for healing the sick, all over the world, from all types of ailments.

Saarfels St Barbara (5)
There happens to be a Padre Pio Shrine near Philadelphia. I will share our visit and lots of photos soon!

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