Sunday, December 18, 2011

One Year Later

 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. 


DiJe said...

It has been so amazing to witness your family's journey this past year. Thank you for sharing it with us. Hope your holidays are blessed!

Crazed in the Kitchen said...

Happy holidays to you and Scarlett! So happy for you all...I know your amazing strength will get you through whatever 2012 brings! (including more mobility for Scarlett, I'm sure--which will keep you even more on your toes!)

Sarah said...

All I can say is "Congratulations"

You have come so far, you have done a wonderful job!

Robin said...

I am so proud of all three of you! It has been a hard, long, painful scary, sad and confusing road to say the least, but all three of you are doing it! Together, every day you continue to fight. Scarlett is such a beautiful, smart little miracle, and she makes me remember that God does make miracles happen. Little Scarlett is such a blessing, not only to you both as her parents, but all of us who continue to follow the story of the little girl who won her battle. Praying for you and your family always!

Haley said...

I've been following your blog for a little under a year (shortly after you started it) and I have to say, it has brought me many tears, as well as smiles. I think of Scarlett and you two often and am so happy things are going well. I wish for nothing but the best for your little girl in the year 2012. Happy Holidays!

Praying for Hope said...

I don't know how you do it, but Im glad you're able to get through all of this with your sanity and love intact. 2012 will be another year of great things for you and your beautiful girl.

Anonymous said...

What a gorgeous little doll you have there! I haven't ever commented before, but I have followed you since the beginning. -I found out about you guys on BabyCenter. I've been amazed and truly touched by your family's strength and courage to fight for Scarlett. You've given so many people inspiration and hope that is immeasurable.

I hope you guys have a fantastic Holiday Season with your little miracle. Again, she is so beautiful, I could eat up those cheeks!!!

Angela Ramsey and family.

Anonymous said...

Your blog is on my favorites at work and I check it just about every day. As a mom myself I truly admire you both for keeping positive and doing all you can for Scarlett. I can't imagine it's been easy by any means, but there's something about the love for a child that will take you through it! Wishing you happy holidays and many many more with your baby!
Julie from Ohio

Stephanie said...

It's been one year since I've been following your story. You and Chris have continually amazed me with your strength and courage, as has Scarlett. May you have a very Merry Christmas filled with wonderful memories. God bless you as you fight on in 2012.

Always praying for you in Michigan,

jeanette burkholder said...

You, Chris and Scarlett are so inspiring. Its amazing how strong you all are and what you have been through. I love reading your updates. Thank you so much! Praying for Scarlett everyday <3

Samm said...

Oh my goodness! I haven't had internet in a few months, and I'm so glad to come back and find out how strong she has become! You three are the most amazing family. She's still in our prayers to continue to grow and and become a little better every day. You and Chris are in our prayers too! We can't imagine what it's like to be going through any of this. Merry Christmas!! And many hugs and prayers for all of you!!

Tabitha said...

You are all amazing. I'm glad to hear you're all so strong and fighting. Stay strong and keep turing inward together...that is so great to hear.

Tara Poor said...

When we first heard from Lindi that Scarlett was sick last Christmas, Wade and I cried so hard for you guys. We prayed that everyone was wrong, and that you guys would show the world. We couldn't even begin to put ourselves in your shoes.
Now, we look at pictures of Scarlett and how much she has grown, overcome, and what still lies in her future and we are so proud of all of you. I know we are not your family, but we can't help but always have the three of you on our minds. I am so happy that you are all enjoying Scarlett's second Christmas and looking forward to her future.
Lots of love,
Tara, Wade, Walter and Ryan Poor

MC said...

All 3 of you are such a strong family. You all inspire me. I pray everyday that Scarlett gets better, and that one day these will just be far away memories for you. She's so beautiful!
Merry Christmas to all three of you. I wish you a very happy new year.
Hugs from PA

Irene K said...

Merry Christmas to Your Family :) Love and strength from Austin TX

Christa said...

Thank you for sharing your journey with us! I think of your family often and am so happy for scarlett's progress. Sounds like she is a busy little lady and I'm glad to hear she's doing well! Happy holidays to you and your family!
--christa, oct. 2010 mom