Neuroblastoma

I thought I'd post a little bit about Emily's health issues, since I haven't done so yet. I don't really like to talk about it and just want all the procedures to be over so I can have a healthy baby. I was torn about posting and keeping this blog upbeat and happy, but it is a pretty big part of our lives and so I thought I'd share.

I'm not sure there is anything worse than having something wrong with your child and not being able to "fix it". Our time spent in the NICU and our frequent visits to Chapel Hill's Children and Cancer hospitals have been extremely trying and makes you realize that 1) you should be thankful for every minute with your child and 2) there are parents and children in worse positions than you and it is awful.

About 6 months into my pregnancy, an ultrasound tech saw something small above Emily's kidney. From that point on, I was monitored weekly by a specialist that checked Emily's growth and the mass. After she was born, they confirmed that the mass was of significant size - about 4 cm. Fortunately, everything else has been great...good eating, breathing, etc. She was transported to Children's hospital for a few days and since then, we make monthly trips. Her case has been assigned to an pediatric oncologist and a pediatric surgeon. We love her oncologist and the entire Pediatric Cancer center...they are great people that have REALLY tough jobs.

In November, Emily went through an MIBG (radioactive dye that is inserted and scanned through a gamma machine), an MRI and a CT scan. The MIBG is used to identify cancers and unfortunately the adrenal mass did come up on the scan, leading the doctors to diagnose the mass as a neuroblastoma. Here is what I know about neuroblastomas, so far:

-Form of cancer found in children, which attacks nerve cells and forms a cancerous tumor
-Usually occurs in the adrenal gland (above/attached to the kidney)
-About 650 cases in the US per year
-Treatment options are surgery, radiation, chemo and clinical trial (Emily's mass is too big to be included in our doctor's clinical trial)
-4 stages (stage 1 is a tumor that can be completely removed with a cure rate of over 90%, up to stage 4 which occurs when the cancer has spread to areas like bone marrow and other organs with a cure rate of 50-80%)
The cure rate is much better when the neuroblastoma is detected before age 1, which makes me SO thankful to that one ultrasound tech who noticed something strange on my ultrasound. Neuroblastomas are the only form that can regress on their own, however Emily's is a little bigger than they normally see. On the other hand, it shrunk slightly last time, which gives us hope. We are due back to Chapel Hill in a few weeks, where she will be scanned again. If it has shrunk significantly, we can wait longer to see what happens. If it has stayed the same, they are suggesting surgery. Either way, it is our decision to make and I'm not sure how we are going to do it. Part of me just wants the tumor out, but that means surgery that has its own risks and they may need to remove her kidney in the process. I don't want her to lose a kidney, so it is a difficult decision to make.

I see these parents in the cancer center, sitting with their kids getting chemo and I wonder how they do it every day...both the kids and the parents. It is hard to think of something being wrong every time you look at your baby. I pray that in a year, Emily will be waddling around the house and we can look back and laugh about it all because she will be tumor and cancer free.