Tuesday, December 28, 2010

Whirlwind

How do I even describe our day yesterday?

We met with our oncologist at Stanford yesterday morning.  He gave us the 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.

He discussed the "menu" of treatment options: surgery, chemo or both.  It was quite obvious to us that chemo alone will not be effective against such a large tumor.  The neurosurgeon we had been working with had never presented surgery as a viable option.  However, the oncologist suggested we visit another surgeon across the bay who might be willing to look at Scarlett's scans and give us his opinion.  He made a quick call, and we suddenly had an appointment that afternoon with the neurosurgeon at Children's Hospital of Oakland.  The oncologist got us a CD-ROM of her MRI and sent us on our way, telling us to call him once we have made a decision.

As we drove across the bay, we started reading over the surgery report we were passing to the surgeon.  It was sickly fascinating to read the exact details of Scarlett's surgery, from the types of blades and placement of blue towels to the color of the tumor as it pouched out of the skull.  It ended with "no complications."

The neurosurgeon looked at Scarlett's MRI and surgery report briefly before coming to speak to us.  He immediately launched into his plan:  a radical surgery to remove every speck of tumor he could, followed by chemotherapy at Stanford.  The surgery is risky and long; 20 hours at least, and possibly continued in a second surgery depending on how she reacts.  A few weeks of recovery in the hospital before beginning regular chemo treatments.  He wants her admitted by the end of the week, with surgery on Monday or Tuesday.

He said it was our only chance to save her.  He feels that, unless we go forward with surgery, chemo is a waste, not to bother.

We were shocked.  We had been prepared for no option.  We had not expected a chance.

We have consulted with our other doctors at Stanford, and they agree we should go forward.  Today we will schedule her surgery for the first days of 2011.

61 comments:

Amy Biagini said...

I am so excited and hopeful and happy that Scarlett will have a chance to fight this!

Steph, Jeremy, and baby Jonah said...

Wonderful news! A chance is much better than no option...must be all that prayer going on! We will continue to pray for baby Scarlett and your family. Enjoy your weekend and don't forget to give Scarlett a kiss at midnight on NYE (it's good luck!).

Mrs. B said...

I am so glad to hear she is being given this chance! I am keeping you all in my thoughts.

Veronica Martinez said...

That is such good news! Will definitely be keeping her and your family in my thoughts and prayers!

Stella said...

I am so happy to hear there is a chance. I think of your family everyday and pray for Scarlett's recovery.

Kristin (BBC Oct 2010) said...

That is great news, keeping Scarlett and you all in my T&P with the hope that Scarlett will have a full recovery.

Marquez_Mama said...

I have been waiting for an update and so glad to hear she has a fighting chance! She is a tough little angel still thinking of Lil Scarlett and her amazing parents ;)

Kay said...

Praying for Scarlett, you and your family and all the doctors and nurses that will be performing the surgery and taking care baby Scarlett. I pray that this is a success!

Molly (from BBC March 2010) said...

You don't know me (I heard about your Scarlett on BBC), but I am in tears hearing that surgery is an option and your baby will have a chance to fight this awful thing. I will be thinking about you guys this week and will be checking here for updates. Good luck!

Tessa said...

I don't know you but I heard about your story and blog from The Bump. I cannot imagine what you are going through and my heart breaks for you. I have your family in my prayers and hope for the best for you.

Keep your spirits high. In 2005 my dad was diagnosed with an aggressive, uncurable cancer. We were devasted, but he is here today and is cancer free. Miracles happen and I wish one for you!

Teresa said...

I got shivers reading this-Scarlett is in my thoughts and prayers! Great news that there is an option.

Rebecca said...

I have been reading your blog from across the states in PA. A facebook friend of mine posted the link and I have been checking back each day to see how you all have been doing. Please know that Scarlett is in our thoughts and prayers and we are wishing for the absolute best outcome! Stay strong and brave as you have been.

Kim Seattle, WA said...

I first heard of your story from Baby Center. I'm so touched I'm at a loss for words. I'm praying for your sweet baby Scarlett. You are both amazing and strong. xoxo

Kelly Jo said...

I found your story on BBC and you have been in my prayers and I will gladly pass your story along.

Trina said...

I'm from the November 2010 BBC Birth Board and have been following your story since it was posted. I am so happy that Scarlett has a chance for surgery! I will continue praying for her...and for a successful surgery and therapy! Stay strong and cherish every moment you have with your precious baby girl!!!

Miss Max said...

I'm from TB and have been following your blog. T&P's from my family to yours always! Glad you have received some answers, now lets get that beautiful baby better!

Jessica (BBC Oct 09) said...

Thoughts and prayers to you and your family. Scarlett will be a fighter! I just know it! I am so happy that she is getting a chance to fight this awful tumor! Praying hard from FL!

Beth (BBC Sept/Oct 2010) said...

Hi I'm also from BBC (Sept/Oct 2010) I am also in tears to hear she has a chance to attack this tumor!!! She is such a strong fighter already that I feel she is going to over come this obstacle! It will be a rough road but not nearly as rough as having to sit and do nothing. Now you have the greatest thing ever....hope! I have been and will continue to pray for your beautiful little girl and for you both! Stay strong and keep fighting this you are all stronger then it is!

Carrie said...

I heard about your story over on Babycenter, and I am watching,reading and praying for your little girl.
She is gorgeous and I am so happy that Scarlett has a fighting chance.

Lily said...

I have been following your story on BBC, and can only say that I was reduced to tears on finding out Scarlett has a chance with surgery. I am going to be praying as hard as I can...we will keep spreading the word for Scarlett!

Sheila said...

(tigbird from bbc Oct 10) Scarlett has been in my daily thoughts and prayers. I am so excited to hear that surgery may give her a chance. Continued thoughts and prayers coming to you.

Sinead said...

Bless you for taking a chance. When I handed over my own daughter to a neurosurgeon in April 2009, I knew that I had to put my trust in his abilities. I prayed for his steady hands as well as my own daughters ability to fight. I cannot explain the fear and anguish in the days leading up to this. Words cannot tell you how fragile she looked afterwards. How white she became.... How small she looked... If that evening someone told me she would be ready to come home in four days, I would not have believed them. But children are incredible fighters and healers and they transform hourly after even the most radical surgery.

Call lifesource tomorrow. See if one of you can donate your own blood for Scarlett. She may need a transfusion if the surgery is long. Talk to your doctor about post surgical seizures - they are a real possibility and the doctors can plan for medication to prevent them if possible.

Get some button down clothes that are accessible for monitoring, iv etc. Babies like real clothes not hospital gowns.

Kelley said...

I'm a fellow mommy from the September Birth Board... I've been following your story and praying for baby Scarlett, you and your family since you started posting. It brought tears to my eyes to learn that there is a chance with surgery. I'll continue to pray for you all, and spreading the word. Miracles truly happen, and I so dearly wish one for you. (((hugs)))

Rebecca (BBC Nov 10) said...

You and Scarlett will continue to be in my thoughts and prayers...I pray for a successful surgery and that you are soon able to put this all behind you! Scarlett is a beautiful baby 9as I'm sure you know!!!) and she has touched many of us with her story. Big hugs mama

Jaclynn_kyuss said...

That is wonderful news! Good luck to all of you.

Nicole - from BBC October 2009 mom said...

I've been reading your blog without commenting, and today I feel like I must say something to you. I learned about Scarlett though BBC, I'm an October 2009 mom. My LO's due date was Oct 16, 2009. So, the 16th of October is a special day for us as well! I read your blog every day, anxiously waiting for an update. My heart breaks for your family, and I wish you nothing but the best. You are so strong, anyone who reads your words can tell that. I think about your little girl and your family every day and I pray that her surgery works, and I will continue to check here every day for updates. If your family ever needs anything, I would be mroe than happy to help in any way.

Malory (July2010BBC) said...

I have goosebumps after reading this update, I know that God is listening to all of our prayers across the country as we ask him to give your baby Scarlett a miracle, and I am so thankful that she is allowed to fight this horrible thing. I will continue to pray and can't wait to hear that she's doing well! Your family is in my thoughts, and I'm sending love your way <3

Heather D said...

A friend of mine added me to a group on Facebook. I haven't yet looked at the group, just followed the link to your blog.

I am sorry to hear of this story and the uphill battle that you have ahead of you. I will keep your Scarlett and your family in my prayers.

Jenny said...

The doctors gave you an option. I say go for it. There are hundreds of people on BBC alone pulling (and praying) for your baby, so someone up there must be listening. If surgery is the best option, then take it. If you don't, I just don't want you guys to sit and wonder what would happpen if you didn't. Good luck. Sending love and prayers your way. I've been checking this blog everyday for updates on how she's doing. Keep us updated, and keep faith.

Elaine said...

We just found out about Scarlett from your Dad, Brandi, and have read through your blog. You have all been through so much already and have handled it with amazing strength and grace. I can think of nothing worse than to see your child suffer. It is good news that she has a fighting chance and that she is in the hands of the best doctors. Our thoughts and prayers are with you all - especially Scarlett. What a beautiful little girl!

CassieT said...

Sending prayers your way. I believe in the power of prayer and its comforting to know tthat baby Scarlett has a fighting chance. Although you are going through the toughest time in your life, you have done well in keeping us updated.
Your battle will be won, your little Angel will fight with all her might. I read about your story through baby center. I'm from the Sept 06 and July 2010 board.
<3

Tiffany said...

So thankful to God for an OPTION! That's incredible news and your little girl is already such a fighter, I can't wait to hear the next great news. Thank you for keeping us updated. We will continue to keep her in prayer!!

Anonymous said...

My daughter shared your blog on Facebook. Scarlett is just a few days younger than my grandson. I have been praying for you all.
I had friend whose brother was diagnosed with a cancerous tumor in his brain at age 3. He was given less than 50% to live 2 years. That was 33 years ago. He is still alive, the tumor never came back, though the doctors said it would. He had no brain damage. He had many people praying for him.
Thousands of people are praying for your baby girl and for you. May the Lord protect her, guide her doctors and give you all strength and comfort and give little Scarlett healing. In Jesus' Holy Name. Amen!

Anonymous said...

I just read through your whole blog and my heart hurts for you. I can't imagne the stress, anger, sadness, worry and overwhelming love for your daughter that you must be feeling. Please know that you and your whole family and especially baby Scarlett are in my thoughts and prayers. I'll keep my fingers crossed and a prayer on my lips for her upcoming surgery.

Anonymous said...

As i read this blog i had tears coming down my face!!! There is a miracle about to happen and the best year for scarlett will be 2011 when she beats this tumor!!! prayers are still with you family as she goes thru this long surgery and the surgery comes out so well!! Good luck Scarlett,Brandi and Chris!!! You will get thru this!!! Vanessa(Sept2010 bbc)

Anonymous said...

Scarlett is in my thoughts and prayers.

Challys & Fred said...

Thrilled to hear she has a fighting chance in spite of what sounds like a rough journey ahead. Keeping constant prayers coming your way.

Kimberly said...

Still here on this blog and facebook, still thinkin of u all and prayin all the time.

Anonymous said...

baby Scarlett as well as you and your family will definitely be in my prayers! Please don't lose hope!

Holly said...

God is watching over your baby. He made an option available when it was thought that there was no option. I will continue to pray for your little girl. Miracles can and do happen all the time.

Lindsey said...

I am praying hard for you guys! God provided this option of surgery for Scarlett, and the hope of her recovering fully. Keep us updated!

Susan said...

So happy you have been given some hope and Scarlett will have a chance to fight! Praying for your family each day and for the doctors that will be fighting this battle with you. Your strength is amazing and Scarlett is lucky to have you for her parents! Have faith, miracles happen every day!

Sarah said...

Soooooo glad there is hope! God is working in a very special way with little Scarlett. I am praying for you all.

Anonymous said...

Wow! I've been reading this blog since hearing about you on Baby center. I'm a doctor and new mom and am SO happy to hear that the medical profession has been decent to you so far. I am praying for your baby every day and hope that this surgery will be beginning of the miracle she needs!

Anonymous said...

I am so so happy to read there is a chance. Even a small chance is better than no chance. I will be praying for your little girl. I hope everything will go great.

Michelle said...

You don't know me, but a friend of mine has posted prayer requests on her FB. I just wanted to let you know my brother who is a pastor in FL has spread the word and all the churches he works with are praying for Scarlett along with churches in VA and down here in So. Cal. Scarlett is in our hearts and mind daily and we will continue praying for not just her, but you as well. God bless you! Scarlett deserves the best life has to offer... I believe she WILL see it!! She is already a miracle.

Molly Jean said...

I realize I am a stranger to you, but I just wanted to say I stumbled upon your blog and I'm praying so very hard for your family and your sweet little one.

Anonymous said...

Read your story on BBC. Just want to let you know that I have been praying for your family and daughter nightly. My god bless you all.

Anonymous said...

Wonderful news! Continue to stay strong and keep the faith. You, Chris and your beautiful butterfly Scarlett continue to be in my thoughts and prayers.

Anonymous said...

Wonderful news! Every child deserves at least "a chance"! ...and you finally found it!! I feel certain you are making the best decision in trying to remove the tumor....lets fight this sucker with everything the world's got, kwim? Best wishes...stay strong...and I hope and pray the surgery goes well and Scarlett pulls through and returns to you her happy adorable self!

Marlene said...

I am so glad to hear the great news that Baby Scarlett still has a chance to fight. Not a single day goes by where I don't think about her. She is still in mine & my family's prayers. Love & miss you three.

M said...

I said a quick prayer that God will lay his hands on your baby girl. I will continue to pray until she is well. Good luck to your family.

Ashley said...

I know your story from The Bump. I am praying for your beautiful Scarlett. I am praying for you and your family.

Jenn said...

Prayers for a good start to 2011! I am so glad they have given you that hopeful option.

Dawn (July 2010) said...

Wanted you to know that you are in our thoughts. Scarlett is such a strong soul and it is wonderful that there are now options to try and battle this thing.

Natalie said...

Lean on your faith, he guide you, give you strenth, and protect you all! I don't know that any little baby has more prayers than yours.

jetpack77 said...

Nothing is impossible for God. He created her and He has a very special plan for her life. Will pray that includes healing her. E

Anonymous said...

I heard about your sweet little girl on Baby Center and have been following your posts. I'm so happy you have a chance to save her. My family and I (and all of my facebook friends) are praying for a miracle for Scarlett. Thank you for updating so often.

Sami said...

I've been reading your blog and following your story. I have asked all of my friends who are closest to G-d to pray for you. I have also been Googling... Found some positive results in this spectrum. Even this study: http://onlinelibrary.wiley.com/doi/10.1002/pbc.22008/abstract

This ended well. I am not giving up on my positive thoughts for you.

Anonymous said...

I am from BBC and heard about your story through a thread and have been reading your posts. I do believe that God is in control of everything that happens to us, and the fact that there is suddenly a chance for your little one, is definitely a God thing! This is just AMAZING!!! I pray that the surgery goes well and that God will lead the doctors through this whole thing!
May the Lord bless you and your little girl!!!!

Elle Belles Bows said...

Prayers are with you right now. Kerri