On Sunday 17 Aug 2014, Liam was diagnosed with Neuroblastoma. This was after a month of fussiness that could not be explained.
Six weeks prior to this diagnoses, we had a normal, almost 2 year old. When he started being fussy, we figured that he was sick, but nothing that a kid his age might be expected to get. He was fussy in the middle of the night, and this really caught us off-guard. He has always been such an easy going kid — He was sleeping through the night at 12 weeks. So what was going on?
We started noticing that their were bulges in his testicular sack. Hernia! He must be fussy because of an inguinal hernia. Knowing how painful that can be from my own personal experience, we got him to his PCP as soon as possible. She agreed that we should see a surgeon. I immediately scheduled a consultation at Children’s Medical Center in Dallas, and we were seen in short order. Once seen, the doctor agreed, and we had him in for surgery the very next day.
Once inside to repair the hernia, the surgeon found no real evidence of an inguinal hernia. We were told that what we must have been seeing were large veins in the testicular sac. We accepted this, but really did not question from that point that the fussiness could be something else.
The three days following the operation, Liam was doing pretty well. He had had a local anesthetic which helped numb any pain from the surgery. We thought we had whatever this was beat… Then the fussiness started again. After about a day of this, we called a nurse. A likely culprit: constipation. So, we loaded the kid up with miralax for several days until the Poo ran clear. Still fussy. A couple more days later, I called a nurse again. The thought at that time was that that maybe he wasn’t eating, and that was causing his bowels to not be working correctly. Give more Tylenol and Motrin — ease his comfort from the surgery so that he can eat.
He seemed better while well stocked on the pain meds, but I kept thinking to myself, “This seems like a lot of pain medicine for just a hernia operation”
Around his birthday, he developed a black eye. Those bigger siblings of his must have been playing rough with him. So of course, a scolding was in order on the etiquette of being gentle with their baby brother.
As the next week rolled by. More bruising developed on his legs, and his color was turning pale. He looked normal to me, but he was turning paler by the day so slightly I wasn’t noticing.
The fussiness continued throughout the day and throughout the night.
It wasn’t until Liam had a chance to spend the night with relatives while Jenn and I went away for an evening to celebrate our anniversary that the grandparents had the chance to notice that something was off and the bruising didn’t seem right to them. When they returned him to us, they voiced their concerns. I watched Liam as we fed the kids pizza that night. He ate a couple of bites and his belly became super distended. It was already looking pretty large. “Maybe there is something going on that is unrelated to the surgery,” I thought. Right then and there I decided that I would take him to the ER. Jenn had been working with him at this point and had dosed him again with pain meds. He fell asleep pretty soon after.
“Well, if he wakes up in the night I will take him then,” I thought. I want him to get his rest.
Sure enough at about 3:55AM, he stirred us awake. I loaded him up in the car and drove to Children’s Medical Center in downtown Dallas. I had been thinking all night that he must have a blockage in his bowel. It was time for an X-ray. Let’s shine some light through this problem.
There was no one in line at the ER at Children’s at about 4:45 when I got there. I was seen pretty fast. Imaging was occurring faster than at any other time I have ever been to the ER.
About an hour and a half later a doctor came in my room and announced that they had found a mass above the kidney.
In that moment, I felt relieved. There had been a reason that my calm and peaceful boy had been so fussy.
In the next moment, the name of the cancer that it was most likely to be (because of how it was presenting) was announced to me: neuroblastoma. I had never heard of it. Which is probably why I did not freak out like they were expecting me to.
So after they left the room, I googled it. This is what I found: Less than 50% survival rate when in the high risk category.
I called Jenn, “They found a mass on his right adrenal gland atop his kidney. You need to get up here.”