Monday, September 26, 2011


Most of the year I don't think too much about Austin's medical issues. They don't affect our lives all that much on a daily basis and I suppose it's natural to try to put unpleasant things out of your mind. Even when I meet other parents of babies or children with large nevi and try to raise money and awareness I still don't think of Austin as having a serious condition that will be with him all of his life and could shorten his life. I'm pretty successful at this until it is time for his annual MRI of his brain and spine. I am ashamed to admit that this year I put it off as long as possible, partly because this time he required general anesthesia instead of what we usually do which is called IV sedation. He usually goes to an outpatient clinic where they hook him up with IV medication and he has the MRI there. It is not far from our home and we have gotten to know the people there over the years and feel somewhat comfortable there, as comfortable as you can be at a medical facility. But last year the anesthesiologist informed us that Austin woke up several times during the study and as a result he strongly recommended that we do not attempt an MRI with only sedation again, he should be put under a general anesthetic in order to get the best result and to prevent having to redo the MRI. I was very upset at the idea of putting him under and therefore procrastinated and did not have the MRI done until late July. On August 3 we went to see Dr. Tomita who once again informed us that there were no changes in the MRI, in the spots or with the hydrocephalus. Obviously great news, and it makes me feel ridiculous for the emotional turmoil I put myself through for the preceding several days. Even though I saw no signs of any ominous changes in Austin and I knew he had been doing great developmentally, just like every year I panicked right before the MRI. The what-if's take over my brain and memories and feelings from that September four years ago come rushing back. Too many children have been taken by NCM in the past 4 years and it's so hard to believe that Austin is still here with us and doing so well.

September is hydrocephalus awareness month. If I would have had any awareness of hydrocephalus 4 years ago I think I could've avoided some pain for Austin and possibly some of his early developmental delay (in gross motor skills). But all I can do now is hope that I can help someone else understand and help share what I know to help parents of children with NCM or hydrocephalus, or both. The only way I know to do this is to share Austin's story with everyone and hope that they understand hydrocephalus better, as well as the strange and rare condition that caused it so we can someday find a cure for both.

As a coincidence, September is also childhood cancer awareness month. Four years ago this week we were told that Austin had an extremely rare and incurable form of brain cancer called leptomeningeal melanoma. I'll never forget the day the oncologist used that term and I said "what's that? I thought they said he had neurocutaneous melanosis," and the look on his face when he told me that at this point we are hoping he *only* has neurocutaneous melanosis. Even though not many survive NCM with hydrocephalus, leptomeningeal melanoma is worse. And that night when he called me from the train after meeting with the tumor board, saying we should have a catheter implanted in Austin's chest for chemotherapy at the same time when his brain biopsy was performed, but he completely understood if we choose not to do chemo because at his age (one month) it would be terribly hard on his little body. In my mind he was saying he had no chance and that the humane thing to do was let him die peacefully. That seemed like the final blow to our hope after so many days of bad news and worse news and hospice nurses and chaplains and little booklets telling us how to arrange his funeral and doctors talking about him in the cafeteria like he was a lost cause. Thank God we also had a neurosurgeon who knew better than to jump to conclusions about anything and insisted we get the biopsy results before even discussing chemotherapy because as you all know he did not have cancer. And as soon as we got home from the hospital, especially after the shunt revision but even before we knew he didn't have cancer, he was such a different baby. Smiling, happy, interacting with people. I knew a baby who was dying would not be thriving the way he was. I always said we just want all the time we can get with him and all I ever asked God was please don't take my baby. Every year at this time I find myself saying it. I'm glad September is over.

After shunt revision

Home after first shunt

In the hospital in critical condition