The Concert

 

 We had an amazing time at Lilly Mac's last night.  We packed that pub full of family, friends, music and food.  It was so wonderful to see the outpouring of support for Scarlett.  She was less than thrilled to be there, but did her best to enjoy herself. 

THANK YOU to Marion, Stephanie and all of Banish the Dogs for setting this up and playing.  We had many people ask us where to buy your CD...time to go big!

THANK YOU to the staff of Lilly Mac's, who outdid themselves trying to serve the full house while tripping over kids.

THANK YOU to all the families from my school, and especially my first grade class, who came out.  I loved getting to see the kids and all of you.  Chris and I feel very lucky to be a part of this group.

THANK YOU to my teacher friends who braved a pub full of their students on the weekend.  You guys are awesome!

THANK YOU to my old friends who came - both past teacher buddies and even friends from high school!  

THANK YOU to the very nice couple and their October baby (sorry, I forgot all the names!!) who came all the way from Alameda (very far!) and even brought an adorable hat for Scarlett.

And finally, THANK YOU, THANK YOU, THANK YOU to everyone who dropped something in the band's tip jar for us.  We are amazed and shocked at how generous everyone has been, and we feel so lucky to have this much support.  

From the bottom of our hearts, thank you all.

Scarlett's Benefit Concert

Just a reminder for SF Bay Area friends and readers...

Fundraiser for Scarlett

Banish the Dogs

Sunday, January 30, 2011

5pm-8pm

Hosted by Lilly Mac's Irish Restaurant and Pub

187 South Murphy Ave,
Sunnyvale, CA 94086

We are planning to attend with Scarlett, even if we can only stay a little while.  My understanding is that a jar will be placed near the band to collect any contributions.  Food and drinks will need to be purchased. 


We would LOVE to see you there!


PS - sorry to everyone that lives far away!  We wish we could get to meet everyone who has been rooting for us!

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.

Hiding

Being home is lovely.  We slept in, cuddled with Scarlett in bed, and tried to take a day to relax.  Unfortunately, we had no groceries in the house, so this afternoon, we decided to venture out and pick out some food.  Scarlett is safe to take out as long as we are very careful of her head and stitches; however, we agreed that we didn't want to bring on unwanted attention, so we just slipped a cute hat over her head.

As we were shopping, we joked how we would respond if someone asked, "How are you?".  No unsuspecting stranger needs the drama of our recent story.  But then, the grocery checker started inquiring about Scarlett.  How old is the baby?  What's her name?  What day is her birthday?  Does she sleep through the night?  Is she eating well?  All very normal, very common questions I have received since she was born, and that I have probably asked many mothers.

We started off well, just answering the basic questions in front of us.  She's 3 months.  Scarlett.  October 16.  Then, it started building in me, the anxiety of having to, needing, wanting to explain, out loud, to a stranger, what was actually going on.  

Shehasabraintumorandwasinthehospitalandnowishavingchemoandwedon'tknowwhatwillhappen.  Like letting the air out of a balloon.

I held it in.  I didn't burden the woman with my woes.  No one should have to hear it.  Coo over her, tell us how beautiful she is, tickle her toes, but don't feel sorry for us.  We're lucky we have her, and don't want people to feel worse for meeting her. 

Until then, she'll wear a hat.

Pictures

A few pictures from our last few weeks.

The first day after surgery #1.

 

Playing with her toys about 4 days post-op surgery 2.

Her official 14 week picture, in her new monkey hat.

Her ruffly new hat.

Daddy's punk rock baby.

Home Again

We didn't know if we would ever get to bring Scarlett home when we took her to the hospital 3 1/2 weeks ago.  We said goodbye to our house, and snuggled together before we left, promising we would do everything we could to get her back here again.

And now she is home!!!!!!!

 We only had to stop once on the 30 minute drive home to check that she was okay in her carseat.  She was so excited to come home that she had a huge stinky diaper the second we got to the door. :-)

We have to call tomorrow with lots of questions for a few different doctors, and we will go back for another MRI on Friday, and a shunt is still in the cards, but for now we are home and happy.

Scarlett's Benefit Concert

Happy Monday, everyone!  No word on the tell-tale MRI, so we are anxiously awaiting the signal to go.  Scarlett has gained 100 grams a day for a few days now, and finally broke the 10 pound mark!  Still a teeny tiny girl, but we're okay with that.

I am thrilled to announce that friends from the school I work at have arranged a fundraiser for Scarlett.  Their Celtic band, Banish The Dogs, will perform at an Irish pub in honor of Scarlett, and you are welcome to come!

Fundraiser for Scarlett

Sunday, January 30, 2011

5pm-8pm

Hosted by Lilly Mac's Irish Restaurant and Pub

187 South Murphy Ave,
Sunnyvale, CA 94086

Come on out for some fun and music!  We are hoping we will be able to attend, but it will depend on Miss Scarlett's needs for the day.  Either way, it should be a great time!

Just like the blog, any money we receive from this event will be used for Scarlett's care and needs.  We are hoping to be able to donate to a worthy cause in Scarlett's name in the future, once our immediate needs are met.