Scarlett's Story

<<This is a synopsis of what has transpired so far.  It includes some from previous posts.>>


Scarlett Grace was born on October 16, 2010.  She was 6 pounds 7 ounces and 21 inches long.  We call her butterfly, among other things.  She had two uneventful, normal months.  She was feisty and noisy, hitting all her milestones and developing on schedule.  Then, at her two month Well Baby visit, everything changed.  She had a small bruise on her forehead that we had no idea how she had attained.  This quickly caught the doctors' attention; a examination of her head led to the discovery that her fontanel was swollen. 

She sent us for a CT scan.  When we returned to the office a few minutes later, she said "Something is wrong with her." On the CT scan, she said, there was some signs of bleeding in her brain.  We were sent to the local emergency room, and then Scarlett was transported by ambulance across the bay to Lucile Packard Children's Hospital at Stanford.

You can barely see the small bruise above her 
left eye. This picture was taken a few days before 
the doctor's appointment.

The loud CT machine lulled her to sleep.

We met her in the Pediatric Intensive Care Unit.  There, they performed an MRI late at night.  The next morning, the head of pediatric neurosurgery came to discuss the results with us.  He showed us the scans of our daughter's brain.  Despite our lack of medical experience, we could see there was something wrong with the pictures we were being shown.
Her first MRI.  The pink line shows the outline of the tumor.  The blue line shows the midline of the brain, which divides the right and left hemispheres and should be centered.

He explained that Scarlett's brain was being smashed to the side by a large tumor.  It was about 10cm x 7 cm (or 5 inches by 3.5 inches; the size of an adult fist.)  It was there when she was born, and nothing we did or did not do caused it.  He explained that there was little to be done, that hospice was available.


On December 22, 2010, a biopsy was conducted by removing a small portion of the tumor from under her skull.  The official diagnosis was congenital glioblastoma multiforme.  Glioblastoma is common and deadly in adults.  It is incredibly rare in children, occurring in only a handful of births each year.  Few of these children survive after birth.


After the biopsy, we were sent home.  We celebrated Christmas as normally as we could.


Just after Christmas, we met with the pediatric neuro-oncologist.  He knew we had been told the worst outlook.  He urged us to get a second opinion from another neurosurgeon at Children's Hospital in Oakland.  We drove directly there, and were given hope: surgery was an option.


Scarlett had her first surgery on January 5, 2011.  It took more than 12 hours and removed about 75% of the tumor.  A few days later, on January 14, another 12 hour surgery removed the remainder of the tumor.  She was in the hospital for almost 4 weeks.  In that time, she battled seizures, paralysis, blood loss, bad IVs, strong steroids, and other challenges.  She could not be held for almost a week.  But, after her second surgery, she rebounded quickly and strongly.  We were discharged January 24, 2011.


Even though the tumor was gone, the cancer was not.  She underwent chemotherapy at Stanford.  Her first dose was delayed by a serious case of RSV, but she again fought back.  The morning of her second chemo dose, we had a follow-up MRI, which resulted in a shunt surgery.

In April, she started to have high fevers, so we went to the emergency room, and then were admitted to the hospital for a ventricular infection.  Her shunt was first externalized, then removed.  The infection, in combination with the antibiotic used to fight it and the chemotherapy, caused moderate to severe hearing loss.  Scarlett was fitted for hearing aids in July.

She completed 6 months of intravenous chemotherapy in July, 2011 and her final 6 months of oral chemotherapy in February, 2012.  In May, 2012, she had her skull reconstructed after it collapsed due to a failing shunt.


Scarlett has had 12 surgeries all together, including feeding tube placement, port catheter placement and removal, skull reconstruction and several shunts.  She gets physical, occupational, speech and hearing therapies weekly.  

Two weeks after her second birthday in October 2012, we learned that a new tumor has begun to grow in her brain.  On December 12, 2012, the new growth was removed.  Scarlett will begin a new chemotherapy regimen in January 2013.

We don't yet know what the future will bring for our little girl, but we know that she is strong, and we will continue to fight.

28 comments:

CurvyDiva said...

I believe God has such a plan for you little one that this is her testimony and yours.

Anonymous said...

I will keep her in my heart, thoughts, and prayers!!! God is the only one who can heal her along with the excellent doctors he puts in your path. Keep your faith. Please give your baby lots of loving we all send your way.
Kind regards,
Sabrina Ashton

Anonymous said...

I have been following your story for a little over two months now since the first time I read about Scarlett on baby center. I think about her often and try to keep up at least weekly to see her progress. I have to admit that there are days with my two year old and my 4 month old that make me want to pull my hair out and reading your story reminds me that every day is a gift and we should treat it as such. Stay strong and know there are thousands of people sending positive vibes your way.

Sincerely,
Tyler's Mommy

Anonymous said...

thx for this summary. i've been following for awhile and this filled in the bits i missed. you and your daughter are amazin! prayers for you are coming. (thx Tyler's mom, you are so right!)

Anonymous said...

your daughter is so strong! such a fighter. praying for her and you.

Angelia said...

Keep faith close by - it's Gods blanket. We will be praying for your girl - this protocol has brought our families together - if you need anything at all - we are here!

Angelia m/o Baby Nicholas
www.nickybear.com

Megan said...

I have followed Scarlett's journey over the past several months. I think of her often and keep your family in my prayers.

Timothy said...

Spoke to you guys a few months ago via e-mail, but I just want you to know we continue to follow your story. I know you must hear this from everyone, but I am so amazed by you both. You have such a beautiful daughter. Her resilience is so remarkable, and a true reflection of her parents' spirit. Don't give up, don't ever give up!

Veronica said...

My prayers are with you and your little one. May God bless her with a long, healhty, happy life.

Where One and One Make Three said...

She'll be in my thoughts and prayers. Keep your chin up, little one!! **hugs** to Mom and Dad.

Karen said...

Our baby was also born in October so we've been following your story since you posted on the October birth boards on babycenter. I check in every day to see how Scarlett is doing. You are definitely affecting people around the world. Praying for your whole family.

Megan said...

Keeping you all in my thoughts and prayers! She is such a sweet little girl. Love her pictures, so adorable!

Anita said...

I'm from the July 2010 Boards and have been following your story since Christmas. I too check in everyday to see how Scarlett is doing. Many thoughts and prayers for your family. You guys are amazing, strong wonderful parents.

val said...

I heard about Scarlett on my Babycenter Birth board. I check in on Scarlett often. She is one spunky little girl. I will continue to keep your family in my prayers. Your strength is inspiring!

Jasmine said...

Forte garota, ela irĂ¡ superar tudo isso com toda a certeza!

Jasmine/Julia

Meghan said...

I heard about Scarlett through TB and have been following her story since Christmas. She is one tough little girl, and she's got some wonderful, tough parents to go along with it! My family and I will be keeping all of you in our prayers.

MrsScrapDiva said...

I came across your blog today while I was looking for another blog. What an unbelievable journey you and baby Scarlett have been on. Scarlett is a beautiful baby. You are all in my prayers.

Blundberg said...

I just came across your story and am truly amazed by your little girl. She must get her unbelievable strength from her parents. I will hold her in my thoughts and prayers. Give that little beauty a squeeze for me... xo

kenzielynn said...

Your story is so amazing! Our son was born Sept 29, 2010, and was airlifted a few hours later to the U of M. He was born with a con-genitive heart defect. We were in the hospital until the beginning of December and he went through 3 open heart surgeries. I understand how you feel about watching her go through all of the bad IVs, paralysis, blood clots, and pain meds, Rieken, our son, even had to go through a rehab program at 7 weeks old to be weaned off of high doses of pain meds. I just wanted you to know that we are thinking of you and wishing you all the best!!

Shannon said...

Your story has brought tears to my eyes. I will be praying for your entire family. I know that God has a plan for you and your beautiful daughter! You are all so strong and such an inspiration.

Cheryl said...

She is beautiful as God intends her to be. Steadfast in the Lord, he will carry you through this . My heart goes out to you all.

Jennifer said...

We have our own beautiful Scarlett Grace who was born at 30 weeks, 26.12.2010. I found your video when I uploaded a video to YouTube. God bless you and your little angel and I will pray for you all. Thank you for sharing your story

Stacie said...

Thank you for sharing your story. My son has also had cancer (brain and spine). He was diagnosed with AT/RT at age 3. he is now 7. He is still in therapy as well and needs lots of help with academics. The effects of treatment seem to add up more and more frequently. However, he is still alive and that's a miracle in and of itself!

I too keep a blog at www.smithscooptexas.blogspot.com.

I will keep your little sweetie on my prayer list.

Much love,
Stacie Smith

mommy2eal said...

I have followed you since the begining. (Thanks to babycenter) My daughter was also born in October 2010. Scarlett is such a miracle. God has a mighty plan for her in the future.

We will continue to pray for you & your family.

Emily's mom.

Krystal Andrews said...

You and Chris are both wonderful parents and are exactly what Scarlette needs. I have been following her story since the beginning and I am amazed and thankful for how fabulous she has done. That little girl is one tough cookie. I think God for miracles and pray that she continues to grow and thrive until she is a hundred years old. She is a beautiful, amazing little girl. Happy early birthday to her

mg2287 said...

My mother sent me this link and I can't believe it. We have a beautiful 14 month old daughter named Scarlett as well (it really is a great name, isn't it?) who was just diagnosed with Glioblastoma Multiforme. She begins her chemotherapy next Friday and I have been going through so many emotions. It's so inspiring to hear your story. I will be looking at your page often in the months to come. Scarletts Unite!!!

aheard said...

This little girl is a gift from god.
I think god has this little baby in his hands and is hold her strongly.
Prayers to you and your family as you are truly a strong little girl to hanve gone through all you have. Your parents are courageous. Keep fighting for them......She is beautiful and will live to tell her story....Love and keep her strong lord, she is your angel

4DogsQuilter said...

You are in my prayers, bot for you sweet girl and for you. I went through 23 months with a very sick little girl too, and we lost her at age 4 1/2. I understand so well the terror of what you, as parents, are dealing with..sometimes you live hour by hour. I pray that you can stay strong, for your little angel. God will take care of things, in His way. It was such a comfort to me, to know that HE was in charge, when our Julianda was so sick. His plan for Scarlette will be there, for always. Much love goes out to you.