Chopped Liver

Yesterday I got another call from Dana, the advanced practice nurse for Dr. Stephen Dunn, who is the Division Chief of General Pediatric Surgery and of Solid Organ Transplantation at duPont Hospital for Children. She called the week before but I have been in a "my kid might not need a liver transplant!" mood and had not returned the call. In addition, I was still recovering from Thursday's bloody nose episodes and trifecta of grossness that had Michael and me running around frantically searching for clean sheets, mattress pads, princess dresses, diapers and wipes early Saturday morning.

Dana said that Dr. Dunn would be reviewing Sylvie's CT-scans in the afternoon and basically wanted to introduce the medical team at the Nemours Children's Clinic at the Alfred I. duPont Hospital for Children in case Sylvie will need a liver transplant. It became immediately evident to me that Dr. Dunn's team are definitely experts in a). pediatric liver transplants and b). hepatoblastoma tumors.

Dana congratulated us on the great CT-scan report and Sylvie's low AFP levels. Alpha feta protein in the blood is a tumor marker and is not something that your doctor would regularly check for. When Sylvie was first tested for it and prior to treatment in February, her level was 506 nanograms/milliliter. After 2 rounds of chemotherapy, the number dropped to 8.09.

Dr. Dunn and his team have performed 100 pediatric liver transplants since 2000 with a success rate of over 98%.

I had been a little confused because when I would do the unthinkable and search online, I would see "1 YEAR SURVIVAL RATES...5 YEAR SURVIVAL RATES" and quite frankly, I have been under the impression that Sylvie's cancer is curable and therefore too scared to ever ask this simple question:
WILL SYLVIE HAVE A NORMAL ADULT LIFE?

And Dana answered this scary question by saying that if Sylvie has a liver transplant, the procedure is CURATIVE. She also used the words FULL LIFE EXPECTANCY although there is a chance that as an adult, Sylvie might need another liver transplant.

I almost cried on the phone. Really, Michael and I have never asked this question to Dr. Harris or our medical team at HUMC.

Something I found very interesting is that because Sylvie's cancer was metastatic, even with a liver transplant, there is a [small] possibilty that could return. Therefore the risk of reoccurence with a liver resect versus a liver transplant is basically the same. I had been under the false impression that 'new liver' = no chance of cancer. Dana also told me that standard protocol for hepatoblastoma tumors is 4 rounds of chemo following surgery of any kind. That kind of blows but it's helpful just knowing that.

We talked about live liver donors (i.e. me) versus cadavers. Again very interesting. There are pros and cons to both.

We will know this week if the recommended course of action is resect versus transplant.

Did you know that liver transplants cannot swim in public pools, ponds or lakes?! Me neither but another good reason to not join the Graydon Pool this year!