So we have been asked to participate in a medical study on Hepatoblastoma the tumor Amanda had in her liver. (I just LOVED writing that in the past tense.)
The majority of the questions were easy to answer, others I found myself at a loss. In the end I requested copies of our medical records from the Fertility God's office, my OB's office (more challenging since she retired and I moved to a regular old family medicine doc at a different office) and also the hospital where Amanda was born. This is the one I have been avoiding for...oh, about 7 years now.
I have been wanting to ask, wanting to read, wanting questions answered and yet, I don't really want to know the answers. At first it was "What the FUCK happened?!?!?!?!?!?!?!!!!!!!!" and I thought as long as I had that attitude I might be perceived as just bit too litigious for their liking, which of course lead me to conspiracy theories of the medical records people editing out anything they thought I might not like.
After that I needed to get past my own fears that the records would reveal that the preterm labor/birth were caused by something that I did wrong. No one on earth can out-guilt my own thoughts that I did this to my child. I wanted a baby so badly I took any drug they suggested might help me do that. I continued seeing my OB even after I felt she disregarded my thoughts and concerns because she was a family friend from way back. I had to keep working while Amanda was in the NICU so I didn't spend every waking hour at her bedside (which wouldn't have helped her in any way but at least I could say I was there.) I misunderstood her pediatrician regarding the "fullness" (lump) in her abdomen allowing the tumor to grow to the size of a large grapefruit before we revisited it and discovered it was actually lethal. Do I have guilt? Oh boy, do I have guilt.
What if the cancer turned out to be related to one of the treatments she received in the NICU, or possibly the fertility drugs I'd taken to conceive her in the first place?
Hepatoblastoma is a rare form of cancer in children but it is more prevalent in preemies. They do not know yet whether it is related to low birth weight, immature liver cells, treatments received in the NICU or something else. That is what this study is looking into. But, a superficial look at things would suggest that the number of infertility treatments has increased in that time and the number of preemies has increased with the increase in fertility treatments which would then lead to more cancers related to those early births.
The number of Hepatoblastoma cases has DOUBLED in the last twenty years. Thank goodness they seem to have figured out a good treatment program for it, but still, who would to go through that if they didn't need to? Amanda was diagnosed at STAGE IV due to the advanced state of the tumor, her age and the fact that it had already metastasized in her lungs. I still believe her doctors were shocked at how well she responded to the treatments. It helps when your kid is a rock star like mine! If they can look back at her records and find a common factor with the other kids in the study maybe they can pinpoint a cause which may then lead them to a preventative measure in the future.
So, with all this for the greater good of all mankind prompting me to finally ask the questions and see the answers...I still don't really want to know. I'll look and try to put my self-judgement aside but seriously, not looking forward to getting those reports in the mail. Mostly because, in essence, I DID do this. I'll just have to suck it up and take responsibility for my part. :-P