I’ve been following the story of Scarlett Grace for a couple weeks now, since her parents started a blog to keep family, friends, and supporters informed about Scarlett’s condition. Two days after Christmas, Scarlett’s parents received their 2-month-old daughter’s official diagnosis: congenital glioblastoma multiforme.
This is an extremely rare type of tumor, only seen in a few babies every year. It is highly malignant and aggressive, meaning it spreads quickly and is hard to eradicate. He gave us a copy of a study he was a part of, and it discussed the grim reality we are facing – most babies with this tumor are gone within weeks after diagnosis.
Scarlett’s craniotomy is scheduled to begin today at 8 a.m. PST. Surgeons will attempt to remove every speck of the massive tumor pressing against Scarlett’s brain. If all goes well, they will be done by midnight tonight. And then after a few weeks of recovery, Scarlett will begin chemotherapy.
As I read the posts of Brandi and Chris, I can’t help but compare and contrast their situation to the one I was in five months ago. In a few ways we are alike: We both know far more medical jargon than we did a few months ago. We both know how lonely and isolating a hospital can be, even while you are surrounded by other parents in a similar situation. We both know what it feels like to see the most important person in your world hooked up to monitors and IVs and breathing support, fed pumped breast milk through a tube. We both know the fear that our child will grow up with a permanent neurological disability.
However, Brandi and Chris know a much greater fear than I have had to face: the fear that their daughter will continue to grow weaker rather than stronger. The fear that their daughter will not survive to the end of the month. The fear that their daughter will not survive today’s surgery. At this point, I have to stop drawing comparisons between their situation and mine because the reality is that they’re players in a completely different ball game. Peter always had the odds stacked in his favor. That is not the case for Scarlett.
So if you have a baby who was born – or supposed to be born – in October, give him or her a hug today, and say a little prayer for Scarlett.
You can read Scarlett’s blog here: http://brandiandchris.blogspot.com/