Friday, January 28, 2011

Today we had a follow-up MRI with the neurosurgery team in Oakland.  They were awesome and got us in right away, even though we were early, and afterward took us right to the doctor, even though he was between appointments with other patients.  He looked at the scan and did his magic move over her head and declared that she still does not need a shunt!  His gut feeling is that she will eventually, because most babies with this level of surgery do end up with them.  However, as long as she doesn't show fluid accumulation, she won't be getting one.  If she needs one in the future, during chemo or otherwise, he will do it.

They also removed the non-dissolving stitches and declared that her incision is still healing well.  Her head is very lumpy and has bony protrusions and soft spots all over, but they promise it is healing correctly and all will work itself out over time.  Overall, a great and very rewarding appointment that left us feeling very good!

We went from there to my "old" school, where I worked a few years ago.  I am very attached to the school and everyone there since I went to school there as a kid and my mom has worked there for years.  Getting laid off was crushing, but they are all awesome and still keep in touch and let me come and visit.  We walked around with Scarlett and eventually had half the teachers huddled around us in the hall as they "oohed and aahed" over her.  Having everyone coo at her is so fun - it's much more fun to have that reaction than the sympathy head-tilt that often happens when people hear what she has been through.  So, this is for them - HI GRAHAMMIES!!!  (now you can be famous with Scarlett, Mel!)  :-)

Our next step is a meeting with the neuro-oncology team on Monday.  We have been reading and studying the full, 250-page study protocol that we are considering for Scarlett.  I am so grateful that I have some ability to read and understand the research discussion; my recent experience reading research papers - despite them being in education, not medicine - has given me some advantage in attacking this hulking document that explains all the risks and benefits to Scarlett.  It has empowered us in so many ways, and led us to ask solid questions about Scarlett's treatment.  Combining this with the contacts we have made with other patient families, we feel we are entering the deep, dark world of infant chemotherapy with some understanding.  I am proud of us as Chris and I learn a little more each day and can make educated comments and decisions with highly respected doctors; a little ego boost amongst the darkness.

14 comments:

Amy A said...

I just heard of Scarlett's journey and have spent the past few hours reading your story. As the mother of a 4 month old, I can't imagine what you have been through in the past month. I am very glad to hear that things seem to have gone as well as they could and you definitely have one "tough cookie" on your hands. I will pray for Scarlett, pray for her to continue to do well recovering from surgery, pray that she continues to drain the CSF herself and does not need a shunt and pray that she kicks chemo's butt!!!

Hilary said...

I'm so happy to read this update! My husband jokes that I'm addicted to your family :)

amanda said...

I am do thrilled to hear scarlett is doing so well. You guys are all still on my prayers and I look forward to hearing more good news.

Rachael Marie said...

Thank you for continuing to share your journey with us. So happy to hear of the positive progress. Good luck with the benefit. =) You all continue you to be in my thoughts and prayers.

Sandy said...

You are amazing! Your updates are eloquent and very informative. I am more and more confident that Scarlett's recovery is in her future. I am keeping positive vibes heading in your direction daily.

RLC said...

Thinking of you still and so glad that she is healing well! :)

Bern'sBlog said...

I'm glad that Scarlett is doing so well! I have been following your blog and sharing the updates with my 4th/5th grade class. They pray for her many times a week, and they almost all wore red on her surgery day! There are lots of people praying for you guys!
A little side note. . . It is a totally different situation, but William was born with a hematoma on his head and it calcified. He literally had a BIG horn on head. We had all kinds of cute hats, because he drew attention! He didn't get hair until he was like 18 months either. It is still kinda there, but as his head grew the 'bone' from the scarring smoothed out and is much flatter. I know that is probably the least of your worries, but it is crazy how much their heads change in the first couple of years! We will keep you and Scarlett in our prayers!

Kimberly said...

I'm so very happy that she is coming along so well. She is such a beautiful precious little fighter. We are all blessed to have her here with us on this earth. Thank you for your continued posts, please keep doing so. I know many many people check often and look forward to reading about how things are going. Wish we could attend the benefit concert but we live in Sebastian, FL, lol. A little to far. Just know that myself and my family are here, praying, sending positive thoughts and love to your family.

Anonymous said...

Such great news that she is doing well! (Also great news that you can handle reading such a document. Way to go, smart momma!) Still wishing you the best and keeping you in my thoughts and prayers.

Anonymous said...

yay baby Scarlett!! Glad to hear that mama, daddy and baby ae al getting some positive, fun attention. Enjoy. You all deserve it!

Anonymous said...

I am so very very thrilled that the little butterfly is doing better!! : -)
You are all still in our prayer here in Boston, MA and though we can't be at the concert, please...ROCK ON!!!
God Bless you all and please know that I am still praying my heart out for you all and still lighting candles.
xoxo
Noelle
Boston, MA

Rebecca {{BBC june2010 mama}} said...

YAY!! Way-2-go little Miss Scarlett!! Good news!! Love these updates!! Praying and thinking of you all!! {{hugs}}

Pirates' Mama said...

Yay for Scarlett being brave and not needing a shunt!! I hope your appointment today goes well!
We love you baby girl! You're such a great fighter!
Hugs from central PA!

Anonymous said...

AWESOME update! YAY all the way from Texas!