Saturday, January 15, 2011

Eradication

So, it's official:  The tumor is gone!  The neurosurgeon told us he got every bit he could have with surgical microscopes.  This surgery was just as long as the last one, about 12 hours.  But, there was no excessive bleeding and she did not have to have transfusions like last time.  It got pretty tedious to wait, since they told us at 3:30 they were beginning to close...and then it took another 7 hours to actually finish.  But, the complications were minor; the surgeon explained the delay by telling us the skull piece that had been removed was beginning to shrink and wasn't fitting properly...I guess that's minor to him!  He assured us that, as Auntie Lindi put it, Humpty Dumpty is back together, and she should have just as strong a skull as everyone else.

No blood transfusions has made a HUGE difference in her recovery.  Last time, we didn't see her eyes for two days as they were so swollen.  Her face, arms and legs were swollen.  She was lethargic.  Not this time.  Today, she has had her eyes wide open all day.  Her face, arms, and legs are normal looking and fmoving all over.  She still has the breathing tube, but she is breathing strong on her own.  She is active and alert.  She is amazing!

However, active and alert is difficult for her right now, as she is tethered down.  As I write this, the nurse is taping yet another board to stabilize the IV in her kicking leg.  She is covered in tape, bandages, tubes and wires.  The current count: breathing tube, 2 spinal fluid drains stitched into her head, NJ tube, PICC line, arterial line, 2 IVs, catheter, heart rate monitor (3), pulse ox monitor, bed temperature monitor.  That is 14 connections.  To top it all off, she has been on EEG all day, so the wires and headdress are sticking out of her bandages.  Hopefully, things will start disappearing through the night as she proves to the doctors that she can handle it.

The next few days are critical.  We don't know if the seizures have returned.  Swelling is heaviest at 48 hours post-op.  We are not out of the woods yet.  Plus, it looks like she will have yet another surgery next week, this time to have a shunt placed.  A shunt drains spinal fluid from the brain into other organs when the natural drains can't keep up.  It will be implanted under the skin of her head and will lead through her chest (we aren't sure where it will end yet).  This is a relatively common procedure, and should not pose long-term complications for Scarlett.  It can get infected or stop draining properly, so further surgery may be necessary.  This is a small concern compared to where we have been, so we are just happy to know it will keep her head from swelling.

Once surgeries are over and she is well onto healing, we will move to the next major obstacle to her treatment: chemotherapy.  I have been reading up on what this process may be like, and it is not pretty.  We are looking at months of treatment, inpatient and outpatient care, home nursing and a very sick, very fragile baby.  In addition, the ongoing restriction to her movement and muscle development will require physical therapy and occupational therapy in the short term; more therapy may be necessary as she continue to grow and may show developmental or physical delays.

It is overwhelming to think about, so we try to stay in the present.  She made it through surgery.  The tumor is GONE!

91 comments:

Jen said...

Have been waiting to hear an update! Praise God! Keep fighting Scarlett!

Ashley said...

Thank you for the update . . we have been thinking of Scarlett ALL DAY! I am happy to hear that she is doing well and that she is so active! You have a true miracle baby on your hands . . . keep fighting little butterfly!

Anonymous said...

Ive been fallowing little Scarletts story from my BBC group. And every day I check your updates. Im so thrilled to hear how well her syrgery went. Your whole family is in my thoughts. You are such a strong momma.

Anonymous said...

Have been checking all day! So glad to hear THE TUMOR IS GONE!!! Fight baby girl fight! Thinking of you!

Trin said...

So glad to read this! Wishing you strength for the chemo road ahead. Well done baby Scarlett!

lissasue3 said...

Wonderful news! Continuing to pray for you all!

Jessica said...

I too have been checking much of the day. I am happy to hear the tumor is gone!! Yeah Scarlett!

April said...

I have been refreshing your page all day hoping for an update, although I am sure you have more important things to be doing. It sounds like you have a very strong little girl. I will continue to send good thoughts your way.

Anonymous said...

Have been following your story from my BBC group as well, my thoughts and prayers have been with you for days. I'm so happy to hear that the tumor is gone and I wish Scarlett and her family all the best in the long road of recovery that's ahead of her. Sending lots of love and support from one BBC chick to another!

Anonymous said...

So happy to hear the good news! I will continue to pray for her to fight this!!! And prayers are for Mommy and Daddy to stay strong when baby Scarlett needs you most! God WILL bring you through this!!
Shannon from BBC May 2010

Ashley said...

Scarlett is amazing! She's a fighter. This is great news and I am so happy that this part is over. Continued prayers for your little angel.

Jenn said...

What a fighter. Not only must you be so relieved, you must be so proud of her. God is good!

Anonymous said...

Great news! So happy for your family! I know the road ahead will not be pretty, but you have made it through the dangerous part. One step at a time until Scarlett is fully healed! We will all be here for you every step of the way. Congratulations!

rachaelbrown said...

Fantastic news and well done on finding the time to update us. You and your darling daughter are amazing. Xxx

AngelaCourtney90 said...

Thats is soooo GREAT to hear. Im so glad she came out good. After all of this I believe God will see you through all the rest as he has done so far.... Good Bless you and Scarlett for being strong.... =]

Elaine: Mom from BBC OCT Board said...

Praise GOD!!!

Michele and John said...

Your baby girl is a fighter. Cherish every moment you have with her, no matter what the outcome - because she knows you love her more than life itself and will always be by her side. XOXOXOXO

Anonymous said...

Thank you for the update.She's so amazing I think of her all the time as well as you mom and dad.I love her and I never thought that I could ever love anyone that I had never met but you three seem just apart of my family as my real family.I follow this all the time for updates,I cross my fingers in hoping that when we get an update its a good one.She's such a fighter and im definetly still praying for you three with all my might.

Anonymous said...

A fellow October baby from BBC.

You are so strong Mama! I pray and think about your baby every day. Your story has made me a better mom. You guys are doing so good. Think here and now, the tumor is over with. Scarlett is alive and that is a beautiful thing!

Keep fighting.
We know you can do it.

Anonymous said...

That is wonderful news to hear! Y'all have been in my thoughts and prayers all day and I've been waiting to see this update!
Lots of Love from Kentucky

Jenny said...

Thank you for the update- sending continued thoughts and prayers from Canada! Your continued strength, and that of your daughter is truly inspiring.

Anonymous said...

So very happy to hear your good news. I will continue to pray for you and your sweet, precious Scarlett. She is one tough little girl and is a wonderful blessing.

Anonymous said...

Than you for the update. God bless Scarlett. I pray you come out of this a happy healthy girl and enjoy life with your amazing parents. Julia-Tampa

Anonymous said...

Praise God!
Scarlett's story has captivated our family and we've been checking all day for updates. Crying happy tears for your little girl tonight. What a wonderful warrior you have!
Laura- BBC Sept. 2010 mama

Jamie said...

:D her story will bring hope to so many parents that are encountering similar obstacles. you all have already blessed so many lives. <3 <3 <3 to you and yours

Anonymous said...

have been looking all day for this update. what amazing news. i am praying for you and your family -- and a path to complete health for sweet scarlett. what an amazing baby. she's come through this -- she can DO IT ALL! god bless all of you...

Cole's Mommy said...

Awesome! She is a fighter!

TeamOSM said...

Praise God!! What an awesome thing to hear. Praying hard for a complete recovery...God is so good!!

Anonymous said...

SO happy the surgery went well and little Scarlett is active, or trying to be. We're all so proud of her!
~ BBC Oct. 2010

Erin said...

Praise the Lord for guiding the doctors, giving Scarlett strength and healing, and comforting Scarlett's Momma and Daddy!
While you still have a long road ahead you just take it one day at a time, one step at a time. The Lord is with you all on this journey, especially Sweet Scarlett.

Jennifer said...

Wonderful news! :o) Prayers will keep flowing from Alberta.

Jenellie said...

So great to hear! Stay strong, I'll be thinking of you and sending healthy vibes your way!

BBC - May 2011 said...

Thank you so much for updating! I've been checking all day! Congratulations on getting this far - I don't doubt that you and Scarlett have the strength to keep going! You and Scarlett are always in my thoughts and prayers.

jellybean78 said...

Such great news! Keep fighting Scarlett!

Anonymous said...

Way to go baby Scarlett! You must feel a lot of relief that she's come this far. Prayers will continue from Maryland for strength and continued healing! Blessings to you!!!

Sandy said...

Such wonderful news. What a relief to have this major event behind you. I will continue to keep you in my thoughts. Atta girl Scarlett! keep on fighting sweetheart!

Paula said...

Have been waiting for news so anxiously! Tks fr taking the time to do so.
You must be much relieved now, one step at a time.
Go Scarlett, go!!! you're such a brave little woman!! xoxo

Anonymous said...

Another BBC Mommy here wanting to tell you how thrilled I am for you all that this part is behind you and that things have gone so well. I will continue to pray for you guys! That's one amazing little girl you have. Thank you for all the updates:)

Sarah said...

I am so glad to hear how well this surgery went, I will keep up the prayers from here in SW Texas!!

Lisa Peterson said...

I was watching your posts all day yesterday for news of her surgery. I just saw your post for today. I'm so happy the tumor is gone and she is doing so well. I'll keep praying for her!

Renee said...

Oh great! That is wonderful news. Great job baby, you, husband,and doctors!

Tara said...

What wonderful and beautiful news!!! What amazing surgeons and what amazing and strong parents and family! We love you all very very much and are so greatful to hear such great news.
Lots of Love,
Tara, Wade, Walter and Ryan

Kathleen said...

Hooray for Scarlett! Such wonderful, uplifting news. I'll be praying for her continued recovery and well-being. Thank you so much for keeping us all posted. Hugs from Santa Cruz.

Bethany said...

Wonderful news!!! The shunt will be nothing for her, my nephew has one, it drains into the stomach tissue, he is a normal active 2yr old! So glad your sweet butterfly is such a strong little fighter!

Lisa Maskus said...

I have been following Scarletts progress and am SO happy to hear the tumor is gone. Bless you for all you have had to go through. My son (14 months old) has Spina Bifida and has had 7 surgeries to date, so I can relate to the agonizing waiting of long surgical procedures. He too has a shunt and it seemed like a minor procedure after having his spine closed at just 18 hours old. I wish the you all the best and will continue to pray for Scarlett. What an amazing little girl.

blanning88211 said...

Praise the Lord!
Bless you sweet baby and bless your sweet mom and dad!

Anonymous said...

Thanking GOD that the tumor is gone. We are still praying for all three of you in the days to come. You are a constant in my thoughts.

Anonymous said...

I am so happy to hear the tumor is completely gone! One day at a time is what is needed at this time, and you have a whole army of prayer warriors here supporting your beautiful family. Thank you for keeping us updated.
-FreshOffTheFarm, BBC

Anonymous said...

Praise God. I've been praying for baby Scarlett as well as your family. I am so glad to hear that the tumor is gone. I will continue to pray. Keep fighting baby girl.

Anonymous said...

Oh sweet baby girl. You are such a warrior. We are so proud of you. One day you will be so happy to know that you got the mommy and daddy that you did. You already are, I'm sure. They are the most amazing people. I can't wait to see what you accomplish in life Scarlett, you are such a ray of light. God is with you baby, we pray for you every day!

Anonymous said...

praise God... im so happy to read this and even though you all have such a long road, its going to be an amazing one with the way your looking at it! im so happy everyones prayers are being answered, and im so happy that butterfly has so many people praying for her! love you guys!

<3 cheyenne

Anonymous said...

Don't know how else to say it other than so happy that Scarlett is doing so well. I have followed this blog everyday and you have made me hold my 4 month old daughter (and my other children too) a little tighter. I pray for her continued progress and even though you know the road ahead may get rocky and be may be long give that sweet baby a kiss and know that she is strong and a fighter and she came through one of the riskiest and most difficult parts like a champ. The smallest people are sometimes the strongest that we have ever seen =)

<3 kristine

Sylvia said...

Oh Praise God! I am so thrilled to hear that they got ALL of the tumor out! Amazing! No transfusions this time - halleluia! Yes, you still have a road ahead of you, but God will see you through that one day at a time, just like He did these last few horrific weeks. NO MORE TUMOR! We are so glad to hear how well she did and how active she was today and how she was able to open her eyes. God has been very present and has been faithful to answer what we have dared to pray for. Chris, He heard your plea and your prayer as well as all of the thousands of people who have been praying for you and your family daily since you started sharing. God is showing you His compasion and caring by giving you all these people who have begun to care for all of you and have fallen in love with your little butterfly. He is amazing and faithful and worthy of praise. We will continue to keep you all in prayer as she recovers and faces the next steps in her journey. Much love from all of us in the Garrett household.

Anonymous said...

I saw your story on BBC last month as well. I saw it after you visited the first doctor and I am ashamed to say, I avoided looking at any updates because it was too sad. Earlier this week I found your blog and am so hapy that the prayers of so many people have been heard. I will continue to pray for baby Scarlett. She will always have a place in my heart :)

Irene K said...

This all sounds good. So happy :) And yes, a long round ahead. One step at a time, one foot in front of the other. Thinking of you and Scarlett, love from Austin

Anonymous said...

I too have followed the story from BBC and I will be keeping all of you in my thoughts and prayers! Glad to hear that the tumor is gone and it will be a long road, but one step at a time!
God Bless!~!!

Anonymous said...

One step@a time! Lots of love ts & ps from the august'10 moms!!

Anonymous said...

I am SO HAPPY TO HEAR THAT THE LITTLE BUTTERFLY MADE IT THROUGH SURGERY!!!! I have been following your blog through BBC and I have been praying for you all and lighting candles in your honor. You and your husband and your BEAUTIFUL, STRONG ANGEL are heroes and an inspiration to us all!! I will totally send more prayers your way!
God Bless you Brandi, Chris, and Scarlett
I know that you guys still have a tough road ahead with chemo, but please keep in mind that you all are always in my heart and mind : )

-NOELLE JULY 2010 BBC

Sinead said...

Great news. Glad she is doing well enough to be feisty. Ask for a second opinion about the shunt. It's usually not a routine occurrence after brain surgery. It is common but not needed in every case. Glad she is getting started on PT and OT. Ask for ST also. At her age they work on feeding and swallowing in ST which sounds like she might need.

Anonymous said...

Yay! Keep fighting, Baby Scarlett! You can do it, kid! :-)

Mary - Nov '09 BBC said...

I have no words right now, only tears of joy! Praise be to God! He is good! I am so incredible happy for your family! Scarlett is such a fighter, she is my hero! We will all continue to pray for Scarlett and you on her next long incredible journey! She can beat this, SHE CAN!!!

MamaLamb said...

Thanks be to God!!! Brandi and Chris, I pray for Scarlett, the two of you, the doctors and nurses, and the family and friends of yours that are living this life with you a few times throughout the day. I check your blog every hour on the hour and pray for strength, understanding, answers, and of course, continued miracles. I cannot even put myself in your shoes and "live" your lives right now, your strength is beyond words. But to compare what I was praying for and thanking God for last Sunday to this Sunday...your daughter is a miracle. Keep it up Scarlett, Brandi, and Chris!!! Praise to you Lord Jesus Christ!! Love and Prayers from the Lamb Family in Ohio

Anonymous said...

Thank God! What an amazing little girl! We will keep praying that this miracle continues! Go Scarlett!

Anonymous said...

I have a great niece and a great nephew - one born Sept 15th and the other born Oct 20th. Today we will be celebrating their christenings and I know they will be the recipients of all the hugs and kisses of their own and all the hugs I have want to pass on to Scarlett. Keep fighting Scarlett - we all love you

Anonymous said...

Praise the lord!! We are SO thrilled to hear this new!
- BBC Oct 2010 Mama from Boston

Jennifer M said...

Praise the Lord, the tumor is gone. Thinking of you and your family.

satiglenn said...

Praise God! He is good.

Kate said...

THE TUMOR IS GONE!!!!! We've been praying HARD for you and your family.

I know the road ahead looks daunting, but focus on the right now. Right now, THE TUMOR IS GONE!!!! WOOOO HOOOO!!!! :)

We love you and will continually keep you and Scarlett in our prayers.

Daisy said...

Brandi, you have a gladiator for a daughter!

If Scarlett can make it through so many tough surgeries without so much a whimper, she can overcome the upcoming chemo just as well with your love and the prayers of all of us worldwide.

Anonymous said...

Outstanding news, God is great!! Your beautiful butterfly is one heck of a fighter! My thoughts and prayers for all of you continue. Take care.

Anonymous said...

What a miracle little Scarlett is!! You have been so strong for her and it is showing in her strength. Prayers have been answered. The road is not over but is has not ended. You all are amazing. XOXO
Kate bbc momma

Anonymous said...

YAY! There is not much else to say! YAY! YAY! YAY! Let's hope she is going to continue to improve and amaze us all...I bet she will :)

Anonymous said...

This is truly a miracle, Now she will travel the road to recovery as she opens her wings and grows. Scarlett.. you are so inspiring. "He who has hope has everything". Brandi and Chris- courage is something neither of you lack, I have been following your story for a while and I am so moved by your faith and strength. Thank you for sharing your story with us all and I will continue to keep all of you in my thoughts and prayers! God Bless.

Anonymous said...

Yes! Praise God!! He has truly done a miracle for your family! I think of your family several times a day. I am so moved at how strong you both are and how knowledgeable you have made yoruself with the whole process.
You have touched many, many lives! God is using you to reach others dealing with similar situations. You are a beautiful, strong family!
Will continue to look for updates and pray for you, as you do have a long, hard road ahead of you. I know you will enjoy EVERY possible moment/milestone with sweet baby Scarlett.

Kristin said...

Such wonderful news. I'm continuing to pray for your family every day.

Anonymous said...

That is wonderful news! I read your posts late and the waiting could only have been so long. But, you both are amazing parents! Lean on each other; don't forget. So, glad the tumor is gone and I hope your little girl can get the docs to give her a bit more kicking room. :)

Erin said...

So glad to hear that she is recovering well!
My son has had 3 shunt surgeries (over the course of a year due to hydrocephalus) and compared to what you guys have been through, you are absolutely correct, it will be much easier. Shunt surgeries take about 2 hours total in our experience, and usually only a 24 hour hospital stay is required. The shunt will most likely be placed entirely under the skin, starting at her head and then a small tube will run under the skin and drain the spinal fluid into her abdomen where the body will reabsorb it.
We too have gone the route of PT, OT, ST etc and in addition to helping my son, it has added wonderful people to our support system.
https://grahamstowne.blogspot.com

BrownFamily said...

such beautiful, incredible news! Scarlett is one amazing little girl! Love and prayers to Scarlett and to you, Brandi and Chris. I cannot even begin to imagine the trials you go through each and every day and your strength inspires me. Love from the Brown family in Idaho!

Bev said...

I am so happy to hear that surgery went well. I will be praying hard for Scarlett. Thanks for the updates.

Anonymous said...

so glad to hear this...take it all one day at a time and you'll be surprised at how they add up!

Anonymous said...

keep up the good work nursing, in trials last year it was shown that breastmilk causes cell suicide in glioblastomas after the breastmilk is digested by the stomach (the acid activates the protein)...google "breastmilk HAMLET" pretty awesome stuff.
yaaay for scarlett!

Anonymous said...

If everything goes well she will likely never even remember that this happened. She will be completely healthy by the time she really starts remembering things. It doesn't mean it's not painful now, but Hopefully this will all be over and she can live her life like a completely average (In the best way!!) child. She may never have to carry the burden of knowing she was ever "sick." What a fantastic thing for Scarlet!

Susan said...

God is good! So glad to hear the tumor is gone! Will continue to pray for Scarlett's recovery and strength through the healing and treatments ahead. God bless your family...you show such amazing strength and faith!

Melissa said...

God is Good! I am so happy to hear she is tumor free. Thanks for keeping her supporters updated! Thoughts and prayers to you and your brave little girl!

Michelle said...

God hears your prayers and is carrying your family right now. Scarlett is such a little fighter! She will continue to fight and you continue to have faith and hope. My prayers are with you!

Anonymous said...

So HAPPY to hear that the tumor is gone!! I've been saying my prayers for Scarlett, Brandi, Chris, and the doctors. I will continue to say my prayers that her Chemo goes smoothly. What a little fighter that you guys have!!

*mom* said...

CRAZY HAPPY for you all right now!!! Thank you God and Mother Mary for being with Sweet Scarlett:)

Anonymous said...

What an incredible little girl!!! You are so loved and we know you will continue to "fight like a girl"! -BBC October mom

Liz said...

What a fighter! Praise God! My beautiful Jordyn has the same birthday, I pray for Scarlett while she is nursing and when I think of her (which is a lot). You are strong parents, god bless you!

Anonymous said...

I came across your blog on The Bump and have been thinking about you and your precious daughter all weekend. I cried when I read this post. You are both amazing people and I wish and pray only the best for your family.

Thinking of you all from Brooklyn, NY.

Anonymous said...

http://www.youtube.com/watch?v=Urv7tyeJ7qE