Thursday, February 3, 2011

Next Steps

We have been busy.  Appointments at both hospitals kept us driving around most of the week.  However, we got to visit with my first grade class on the 100th day of school, one of my favorite days.  The kids were counting their 100 snack and making necklaces with 100 fruit loops...awesome!

Today, we saw the neurosurgeon and had yet another MRI.  Still no fluid accumulation, so no shunt!  Yea!  She does seem to have a blind spot in her right field of vision, which causes her to prefer the left.  This may resolve itself, but we just have to wait.  Otherwise, they felt she looks great and they were all pleased to see how much she has grown since she was discharged - she has gained more than pound, and now weighs 11.5 pounds!

Wednesday's appointment was with Neuro-oncology.  They feel like Scarlett is doing great and we all agreed it is time to move forward with chemotherapy.  We get asked a lot why Scarlett needs chemo if the tumor has been removed.  Tumors start from one damaged cell.  That one cell copies itself over and over very quickly, drawing nutrients from the surrounding healthy tissue, until there is a mass of damaged cells that creates a large lump.  The damaged cells can also travel through the blood (or, as with Scarlett's type of tumor, the spinal fluid) and begin growing in other places.  Tumors that grow like this are malignant, or cancerous.  Scarlett's tumor is one that will only grow in the brain;  it is very likely to regrow into her brain, but can't go outside of the central nervous system (brain and spine).  Because it is such an aggressive type of tumor that is very likely to grow, we need to use chemotherapy to kill the malignant cells before they regrow or spread.

Chemotherapy will begin next week.  We have decided to have her receive treatment through a study developed by St. Jude Children's Hospital.  As long as she handles it well, she will stay in the study.  If the doctors feel she would be better off with a different treatment, they will do that.  Being in a study is good because it is a set procedure that has safety precautions built in, and others are having good results with it.  This particular study has been running for a few years, and is being done at Stanford as well, so we don't have to go to the St. Jude campus in Tennessee. 

There are a few steps we need to complete before she begins treatment.  First, she will have a port catheter placed.  This is a long term IV that allows the doctors to give medicines and draw blood without poking Scarlett's tiny arms or legs.  The surgeon showed us a sample; it looks like a button with a long tube.  The "button" will be placed under the skin of her chest, with the tube leading through a vein toward her heart.  This gets the medicines pumping through her system as quickly as possible.  This type of access port can stay in for years; she can still bathe, swim and play and it is much less likely to get infected.

She will also have a lumbar puncture to draw some spinal fluid from her lower spine (this is precautionary - they do not expect to find any malignant cells there, but it is required for the study.)  They will check her hearing, as one of the chemo drugs has been shown to affect hearing (they told us that if they see any hearing loss, they will pull her off the study and alter the plan).

Finally, we will be admitted to the hospital for her first round of chemo next Wednesday or Thursday.  This is the first of many treatments which will last about a year. We're nervous about how Scarlett will react to chemo, but they tell us that babies have it much easier than older kids or adults...which is not to say that it won't be hard, but it could always be worse.

43 comments:

Anonymous said...

I'm soooo glad to hear the she doesn't need the shunt! I will keep Scarlett and the two of you as well in my prayers. God Bless and keep fighting Scarlett! Brandi and Chris you two are sooooo blessed to have such a strong and B-E-A-UTIFUL baby girl

prayers from Nicole and Daniel in ohio (october 09 mommy)

Anonymous said...

I have followed your story for a while but never commented. My husband and I have read your blog aloud to each other, talked about you both as if we know you, and prayed for Scarlett.
I am always amazed by both of your strength and courage through such a trying time.
I pray for continued strength for you both, and especially for Sweet Baby Scarlett.

Amy Beth said...

A year. I can only imagine how you two must feel, looking down this road of uncertainty. There's just so much that is left up to God, and so much that I'm sure you two aren't used to, or know about. I have prayed every night since I first heard about Scarlett, and will continue to do so until you're out of the woods.

And also, what a blessing to not have a shunt put in! A big blessing in and of itself. I believe strongly that God will heal her totally and completely! Think of what a testimony this will be, for you two and for Scarlett.

Angel said...

so happy to hear on everything, keep pushing through, Brandi. y'all can do anything through Christ who strengthens you. that's a strong little girl you've got there :)

Mommato2miracles said...

Glad to hear of your good news! I haven't commented before but have recently been reading and praying for your precious Scarlett. Know that she is being lifted in prayer often. PRaying for this next chapter, that all goes smoothly and that Scarlett thrives.

Anonymous said...

I am so excited to hear that your Scarlett continues to do so well: gaining weight and still no shunt! What a blessing! My best friend started chemo today (for breast cancer) and she breezed through having her port placed and the first infusion ~ I pray for the same experience for your little butterfly! It sounds like the study she will be participating in is a wonderful fit, and I will be thinking of you all as she starts the newest phase of your journey. Good luck little princess!!
~Rebecca (BBC, May 2010)

April and Roel said...

Scarlett continues to amaze! I am still thinking about you every day. I wish you lots of strength as you embark on the next phase of Scarlett's journey to health.

smermom said...

Good Luck! We will be thinking and praying for you. I think of you and your family every night when I hug and kiss my kids before bed!

Tammy said...

Your family is in my thoughts and prayers daily, stay strong!

Anonymous said...

What a blessing that you got to visit your class on day 100, Brandi. What fun! I'm sure all of the kids were cheered to see you. And what wonderful news about how well Scarlett is doing. Yay for 11.5 pounds! I'll bet she's just about out of the 0-3 month size now. I will keep praying for healing and strength for all of you, and especially your little Miss.
Helen (Nov 2010 BBC)

Anonymous said...

I was happy to come home from work and see your post that no shunt is needed. I check on your little Butterfly every day. 11.5 pounds is great news as well.
Chemotherapy is the next step but I know after reading this that you will all get through this. I pray the year goes quickly for all with great results on this path you are following at this time. Hugs from BBC Nov. 10 Nana from Vacaville

Christine D. said...

You guys are amazing! You both are so strong. I have been following Scarlett's progress and praying for her since I found out about her tumor. Thank you for posting all of this online. My daughter (baby Cate) and I continue to wear red every Friday and we will until Scarlett is 100% recovered. Lots of Love, Hugs and Prayers from our family to yours in Northern California.

kerriwike said...

I'm so glad to keep reading your good news! I'll keep Scarlett in my prayers as you begin chemo. Again, thank you for taking the time to update your blog, and explain everything to all of us, I think about you guys every day!

The Cooper Family said...

I'm so happy for you guys! Praying for as smooth as possible chemo treatments. The next year will go by fast, as they all do. I'm sure you have a new outlook on enjoying the moment and the next year will bring many many happy memories. Praying that tumors and chemo will soon be just a memory, and you can spend your time just enjoying each other. Love from Southern OR!!

Anonymous said...

That makes me so happy that Baby girl doesn't need shunt!!
I am so glad that everything seems to be going so smoothly! I am still praying for Scarlett and you both that everyhthing will be ok, that the cancer will never come back, that Scarlett will beat this, that you both will be ok, all good things!!
Prayers and good vibes sent to you as alway from Boston, Ma~~
Noelle July 2010 Birth

P.S.
Still lighting candles for the littlest Butterfly!! God Bless you all

chrissy said...

That is so wonderful to hear that Scarlett doesn't need a shunt! I hope that her chemo goes quickly and she get on the fast road to recovery!!! & We hope that she never has to go through, (and you 2 as well!)

Thoughts & Prayers coming from Pennsylvania!
Hnag in there!
Chrissy - Aug 2010 Birth

Anonymous said...

We are all so proud of little scarlett...I will keep praying that she will continue doing well..

Anonymous said...

Good news about the shunt! And how great to see her growing and gaining weight. I'm sure the chemo will have ups and downs, but your family is so strong I know you will all come through alright. Thanks for the update!

Sandy said...

Good thoughts and positive vibes are headed your way as usual. Keep up the good fight Scarlett!

Anonymous said...

That is great she doesn't need a shunt!

I had a port placed and it was one of the easiest parts of chemo. I had a "Power Port" which allows a high volume of fluid at once so for the CT scans requiring dye I didn't need an IV, they could connect to the port as well. Maybe something to ask about? Not sure if they do that for babies.

Anonymous said...

i keep sending my prayers to your beautiful little scarlett and y'all.

Anonymous said...

So very, very happy that Scarlett is progressing so well! As yet another of the hundreds (or thousands?) of people who have never met you but have grown to care so much about your little girl, I continue to pray for your all and check in for updates. I am sure the road ahead will be long and hard, but it is wonderful to hear that you are one step closer to beating this thing. Hope you enjoy a wonderful weekend!

Renaissance Woman said...

Sounds like she is doing so very well! Don't sweat "the button." My friend's LO had one in for four years and she was just fine. Once it healed it didn't bother her daughter one bit. When she started walking, this little girl would toddle over to you and lift up her dress because she wanted everyone to see her "very special button." LOL It was too cute! She is now very well and is buttonless. :-)

Yay for Scarlett! Keep fighting, baby! You can beat this thing!

Connor's Mommy said...

So glad to hear that things continue to go well. I really appreciate your explanation of why the chemo is necessary.

Will continue to pray for you all!

The Hurlockers said...

Sounds like a game plan! Praying she handles chemo like a champ!!!

Paula said...

I'm so happy brave Scarlett is doing so well!!!You're all in my and my family daily prayers.
Scarlett is amazing!!!!! much love, xoxo

Kelso said...

This is great news that she's doing so well! I will keep you all in my prayers as she goes through these next procedures. She's very strong and so are you!

The Marins said...

It sounds like you have a great plan in place. Scarlett continues to be in our prayers!

Pirates' Mama said...

So happy that she's growing well. Praying that the next step for Scarlett goes well. Hugs from PA

B said...

I check your post daily and am both excited and nervous for you! Scarlett is such a beautiful angel, and she will get through this like a pro, I know it! I continue to pray for your baby girl and your family! Lots of love and prayers from San Diego, CA!

Anonymous said...

Scarlett is an amazing! Your family is always in my T&Ps!

Mary - BBC Nov '09 Board said...

You have such an amazing little girl. And she has two super amazing parents!! You have all been so strong in everything you have been through. And so starts another journey on the path of LIFE! Scarlett's life!! I just know this little angel will have a very long, healthy and happy life! I pray for you every day and am always thinking of you. Keep fighting baby girl!! SO MANY people love you bunches!!! God Bless you!!! x

Mom2Twins said...

Parents of sick babies amaze me. I was one of those Mom's. Mine was a heart defect baby. Now we are the parents of a 'sick' pre-schooler and his healthy twin brother. It's HARD, they are so little. But in the end, when they are healthy and do those amazing things you never thought you'd see them do... it'll be all worth it. The pain, agony, tears, fears, will be all worth it. Just look at that amazing babies face.

She is strong, so are you!

Good Job Mommy & Daddy

Keep your chin's up... YOU CAN DO IT!

Anonymous said...

I am so glad to hear there is a game plan in place for Scarlett! Just think, one year, one year from now and you could be done with all of this. What a wonderful hope to hold on to! Many prayers and much love coming to your family daily from KS.
xoxoxo, Monica, Ryan, and Ethan (10 months)

Chrissie said...

So glad things are progressing and you still have your little girl with you.

God bless you guys!

Anonymous said...

I follow your story, and though I don't know you, I pray for you. I am a mother, and when I find myself frustrated and worried about potty training or ear infections, I think of Scarlett and your family. I marvel at Scarlett's strength and resilience, and your calm determination as parents. I know God is with you and your precious baby.

greeneyedgirl said...

So happy to hear how well she is doing! My daughter was born 5 days after Scarlett and she is just 11 lbs 11 oz!

Praying for you all and the chemo that's coming. I know she will come through it a strong little girl with a huge heart just like her parents!

Jennifer said...

So glad she still doesn't need a shunt! I am hoping that this time next year she will have sailed through her chemo and amaze everyone even more than she has. :)

Kathleen from Santa Cruz said...

Thank you so much for keeping us all updated. My family and I continue to pray for and root for Scarlett- she is a very strong, very brave little girl! She will be in wonderful hands at Stanford. I wish you blessings and luck on Scarlett's journey.

Clint & Sheila said...

Brandi and Chris...
you guys are AMAZING! I cannot imagine what you're going thru. I'm a November 2010 BBC mama and have been following your blog since just before Scarlett's surgery. I appreciate you taking time to post for us all. I pray that Scarlett continues to heal so well and continues to amaze all involved in her care. Good luck in this next chapter and a big cheers to a healthy, beautiful, fully recovered, miracle baby girl soon. May God bless you all.
--Sheila

Andrea said...

Best of luck as Scarlett starts this new phase of her treatment. Saint Jude is a wonderful place and will do their very best for Scarlett and her family! Keeping your family in our family's prayers every day.

Andrea, David, and Olivia (Sept. 2010); Burlington, KY (Cincinnati, OH suburb)

Anonymous said...

Sending love and prayers to all of you. You all continue to amaze us.

rebecca ((bbc june2010 mama)) said...

Im glad to hear little Miss Scarlett doesnt need the shunt!! :) I pray for all of you on first round of Chemo...shes an amazing little babygirl whos been through so much I hope EVERYTHING works its self all out!! Shes a very strong fighter and has already done so so well with kicking this tumors butt im sure she will continue to show everyone just how incredibly strong shes going to continue to be!! Best of luck and prayers to you guys!! I pray and think about Scarlett every day and I def pray for you Brandi and Chris as you two are such amazing parents to have such a miracle. You two are so strong and I really admire you for everything that you've done and everything that your going through!! Shes a very beautiful baby!! {{hugs}} I hope and pray with all my might for you three!!