Here’s how it all went down…
Symptoms:
All her symptoms were masked as typical childhood crap. Our baby, Jillian Elaine Moore had just turned 3 in April and started getting clingy to me. She was grumpier than normal and throwing tantrums more. Her eating became picky and every meal was a fight to get her to eat more than just a few bites. Even when I tried to force her, if she ate more than she wanted (or could, looking back) she would gag and throw up. But I would catch her and Sienna in the pantry an hour later sneaking chocolate or cookies. She got lazier and wanted to do nothing but lie around and play on her ipod. It was hot out and the summer here does make one not want to venture outside. She would complain that her tummy hurt on occasion but I would give her a Tums and she said she was better. At her 3 yr old well visit with her pediatrician, Dr. Sirsy, the 1st week of June, I mentioned all these things and he examined her. He pressed on her belly and found no sign of anything out of the ordinary. She said it did not hurt. All these were “typical” for a 3 year old.
The last week of June, we went on vacation for a week to California. She was a brat. She never wanted to eat, or play in the sand or in the ocean. We went to the San Diego Zoo and all she wanted to do was lay in the wagon. She seemed so sad, I thought maybe she was homesick and all this travel was too much for her. When we returned home, it was crazy trying to get things back to normal. Then there was the 4th of July celebration. She wanted nothing to do with a BBQ, swimming or fireworks. It was such a miserable evening. By the next day she had a low grade fever. Her pediatrician’s office was closed for the holiday weekend. Over the weekend, her temp went up & down. I knew it was just her molars trying to break through, she did have one pop up while we were on vacation. I decided to bring her in to see Dr. Sirsy as soon as we could get her in if her temp was still high Monday morning. I also needed to ask him about her belly button. I thought it strange that it went from an “innie” to an “outie.” Those things just don’t change…do they? Monday morning, low grade fever again, time for an office visit.
The Diagnosis:
Dr. Sirsy had one appointment Monday morning (July 8, 2013) at 9:10. I quickly got Sienna up & all of us dressed and out the door in record time to make it to this appointment. He examined her and said she looks pale. He pushed on her tummy and said it was hard. He thought maybe she was backed up with constipation or possibly a blockage of some sort. I just went through all this with her big sister, Sienna. Her doctor felt something hard in her tummy and thought it may be a tumor. Turned out, she had been so constipated; she was backed up with poop. So I knew that this was the same thing happening to Jilli. Dr. Sirsy advised me to take her to the hospital’s E.R. for an xray. We went straight there.
Dr. Shane, the E.R. doc, felt her tummy and knew right away that her liver was enlarged. He ordered an IV, bloodwork and an xray. The results came right away. She was anemic but her liver values were normal with no jaundice. Therefore, her liver must be fine. The culprit must be a tumor of some sort squishing her liver, making it seem larger than normal. He ordered a CT Scan and passed our case along to an oncologist, Dr. Bernstein or “Dr. B” as we have been calling him. My heart sank as I knew that oncology meant “cancer”. This could not be happening! Jesse left work early to meet us at St. Rose Siena hospital and we all met with Dr. B to go over the CT scan results. It was clear that she had a massive tumor in her abdomen. It was most certainly cancerous. But it still was not clear which type of cancer it was. They were not able to tell from which organ it had originated since it was so large and vascular. It was wrapped all through her abdomen, touching many organs. An MRI will be needed to further identify this disease.
On day 2 of our stay here at St. Rose Siena, she was taken in for an MRI. Unfortunately it was still unclear as to what this monster was. They suspected it to be a Wilms tumor, originating from her kidney. It’s an ugly cancer, but nonetheless treatable. They likely will remove her kidney with it, but people live everyday with only one kidney. The only way to positively identify this tumor was by performing a biopsy. This was done first thing Wednesday morning, day 3. We had to argue with Dr. B to perform a bone marrow aspirate at the same time as the biopsy to avoid further pain for Jillian. They don’t usually do those together and the bone marrow aspirate would not be necessary if it turned out to be in fact a Wilms tumor. But they also suspected it may be Neuroblastoma in it’s 3rd stage. Neuroblastoma would require the doctor to check to see if it spread to her bone marrow. All we could do was hope and pray for Wilm’s. After stressing out and arguing with the doctor about how long it takes to get a biopsy result back, the CEO of St. Rose spoke with us and said she would see about getting these results expedited. On Day 4 of our battle, Thursday July 11, 2013 at 10pm, Dr. B came in our room to deliver the news no parent ever wants or expects to hear. The diagnosis is indeed Neuroblastoma and it is Stage 4. It has metastasized (spread) into her lymph nodes and bone marrow. The tumor is not operable at this time. Her first round of chemotherapy will begin tonight.