Scarlett is now 14 months old. She weighs 20 pounds, 2 ounces and is about 28 inches tall - about the 10th percentile for height, 20th for weight. She has 8 teeth, with 4 coming in (for the last two months!!). Her hair is now more than an inch long and honey blond. She can sit on her own without falling over (too much). She can roll over from her back to her stomach, but only when someone important is looking (never just at home!) She puts EVERYTHING in her mouth - paper, toys, her fingers, other people's fingers, iPhones, and her personal favorite, small pink hearing aids. She loves to play Peek-a-boo, hang upside down and shake her head no-no-no-no with a big grin on her face. If you are really lucky, you can catch her waving. She will only eat from a spoon if she can hold it herself, and completely refuses any bottles or formula now (no milk, Pediasure, water or juice either.) She loves Christmas music, just like last year, and starts kicking and waving her arms as soon as any music starts. She sleeps every night from about 8:30 until 7:00 am, thank goodness, because when she is awake, she keeps us BUSY!
|Her favorite toy is her NG tube, closely followed by her hearing aids.
It has been exactly one year since Scarlett was diagnosed with congenital glioblastoma multiforme, an aggressive malignant brain tumor. One year ago, we thought everything was fine. One year ago, we knew almost nothing about cancer, chemotherapy, hospitals or therapy. One year ago, we were told our daughter was going to die before her first birthday.
|December 17, 2010
We have come so far since that horrible night one year ago. We have learned to fight for our child, against widely respected doctors, pushy nurses and systems that try to exclude her. We have stayed positive, somehow; I can't really explain how, but we have never really accepted the darkness and have kept Scarlett's life filled with laughter, even when we are surrounded by sadness. And, through something that could have torn us apart, Chris and I are closer than ever. We are determined to make some good from all this, so we can look back with Scarlett when she is older and show her how amazing her life has been and how much good she brought to the world.
We are so grateful for the doctors, nurses and other medical providers who have worked with Scarlett over the last year. Her continued development and relative wellness is to their credit. We are also thankful to everyone who has been so supportive - our families, friends, community and all of you who have been reading about Scarlett all this time. It has been amazing to see how far Scarlett's story has reached - nearly 2.5 million pageviews, readers on 6 continents, more than 5,000 comments, two Facebook groups (one with over 3,000 members), boxes of cards and gifts, hundreds of e-mails and thousands of dollars in donations that have kept us afloat for the last year. We are so lucky, so grateful and so thankful for everything we have today. We could not have done it without you.
We are far from the end of this fight. Scarlett will have another MRI at the end of the month to monitor her shunt drainage, and we still have two months of chemo and a few surgeries planned for 2012. We are bracing for another difficult year, but we know we can make it.