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.

Down to One

Scarlett just had the NJ (nasal-jejunum) tube removed!  This leaves her with just one IV left.  Hooray!  MRI tomorrow, and if it is clear, we can go home tomorrow afternoon!  If not, she'll need a shunt on Tuesday.  Good progress!

Weekend 4

It is our fourth weekend spent in the hospital.  We finally got moved upstairs to the surgical recovery floor.  We waited through three days of being told there was not a room available for her, then suddenly, at 1:00 am, Chris got the signal to move.  Time, let alone sleep, means nothing in this hospital.  When they say go, we go.

Now, Scarlett is resting comfortably in her regular crib (she had been in a heated bassinet in PICU).  She is surrounded by a menagerie of stuffed animals that her daddy decided she needed to keep her company.  She has also started eating like a contestant in an eating competition - 4 ounces ever few hours, and finally gaining some weight (about 9lbs 11oz now). 

We haven't heard about the liver ultrasound yet.  As soon as I see a doctor this morning, I will press for answers.  Changing floors means changing primary doctors (the surgeons are in charge of her care, but they see her once a day) and that means I have to make sure they are tracking all the issues we were watching in PICU.  the rash has gotten better with some medicated lotion.  Several doctors have looked at this rash, and they have all agreed it is nothing serious.  I have very sensitive skin, so it is likely that she does too and is reacting to something around us.

Yesterday, we met with our awesome oncology team at Stanford.  They laid out the options for continuing treatment.  We are still making some decisions, but it looks like Scarlett will begin chemotherapy very soon.  It will likely entail cycles of a few days in-patient, a few weeks out for the next year.  We are looking at enrolling her in a research study that is done locally in conjunction with St. Jude's Children's Research Hospital.  The study is good because it is showing some good results with other kids, and it has been continuously running for a few years now.  We are also determined to have Scarlett's experience help other kids in the future, so including her in the study contributes to the greater knowledge about these tumors.  However, the study protocol might not be quite right for Scarlett over time, and the doctors have assured us that if she needs something else, they will drop the study and give her whatever she needs.


I'll write more about the process of chemo later; it's overwhelming to think about sometimes, especially the side effects.  However, we remain optimistic that Scarlett will continue to be strong and come through this.

A Walk In The Mist

The other night was my night to go home.  Scarlett had been doing great so I drove home rather pleased.  At home I fed our two kitties, and proceeded with some market research on a venture I had begun several months back.  I texted my best buddy Mark, and we decided to go out.  I was feeling good about things, and I hadn't seen him in over a month.

We went to B.J.'s, a fake brewery and restaurant (there's probably an actual brewery somewhere). I'm a big fan of craft beer, my favorites usually aligning themselves with Belgium, though most microbrews I can enjoy a great deal. I drank a Chimay Blue and he a...well I don't remember, and I filled him in on how things were going with Scarlett.

We talked.  We quickly moved onto the topic of God, which wasn't all that unusual a topic for us.  He knows my skepticism, but I always feel like he doesn't quite get my point, so like an annoying itch, I scratch at the problem and we circle and circle...but that's okay, because I like the subject.

Mid-sentence the bar manager comes by and we look up.  One or the other of us starts pretending we're investors, and so then we're querying her about restaurant business thoughts.  She walks off, bored or busy, and we're back to why I can't see suffering as compatible with omnibenevolence.  Then he jokes about my ethical reluctance to eat meat as a plate of calamari is set in front of us.  We go back and forth.  So we ate fried calamari (Squids being acceptable to all parties), and played Investors/Philosophers/Food Activists.  Like grown-up dress up.

At his house again, Mark pulled two cigars (from an island ending with the letter "A"), and we went for a walk. It was Cold, so I threw a hood over myself, ordinarily something I would avoid doing, to avoid appearing menacing...but no one was outside this late.  12:45AM, We walked outside of the condo complex, and around the corner onto the main drag.

We walked into this intense barrier of fog.  It was too thick to see across the street, and I loved it. We walked, and puffed.  I can't remember what we said.

We stopped in at a 7-11 and bought strange but appropriate food for 1:30 in the morning.  Outside, we sat on a bench.  A taxi flew into the store's handicapped spot and a guy in a Ralph Lauren sweatsuit tore inside yelling at a cell phone on speakerphone that he held in front of his face.  Two lanky figures walked from the curb into the middle of the parking lot and began to play hackey sack without speaking.  We didn't register the bizarreness of this at first, because they barely spoke, and what they did say was muffled in the fog.  But their half visible forms became our primary attention as I drank red bull and ate strawberry mochi balls.  The angry cab passenger came out, still yelling "no, no man, I ain't going to" before flying off back into the mist.

We walked back to Mark's house and then called it a night.

I woke up the next morning, cigar heavy but somehow refreshed and ready to fight for Scarlett!  It was a night off.  I also put in an e-mail to the pastor of Brandi's parents' church, and he agreed to sit down with me and discuss my thoughts.

As a commenter put it, we have finished a sprint in this surgery, and now must prepare ourselves for a marathon.  I think the other night put a punctuation mark between the two races for me.  Looking forward, we're going to have learn to live regular lives again, on top of what happens.


.

Fun

So, we are inevitably getting stir crazy in the hospital.  Today marks three weeks in.  The TV stinks, so we have been using the internet as our escape.  We thought we would share what has had us laughing in the midst of the chaos.  Thank goodness we can use our laptop!!

(Just a warning - not all of these...hardly any, really... are kid or work friendly; we close the curtains and use headphones if needed...)

• FAILblog
• FAILbook
• Damn You AutoCorrect
• Hulu (we stopped our DVR and cable to save $$ while we were here, so we are catching up on our favorite shows and some new ones; specifically, Raising Hope, Community, Modern Family, SNL, House, Parenthood, 30 Rock, The Office,  Parks and Recreation, Tosh.0, The Soup)
• CakeWrecks
• Young House Love 

If you need a laugh as badly as we do, go for it!

On Hold

Well, Scarlett has decided she doesn't want to move up quite yet.  She has thrown us two curveballs that have paused the move. 

She has developed a rash.  It started out on her leg where she had a band-aid.  It has now spread all over her legs, face, chest and arm.  We're hoping it's just an allergic reaction to something.  She got a bath and some lotion to help calm her skin, and may give her some Benadryl.  I had been pointing out this rash for two days, and they told me it was maybe eczema.  It's not too serious, but we're watching it closely.

In addition, her liver is enlarged.  The resident doctor told us this like it is no big deal.  He said he's not really worried, just curious.  Curious enough to have an x-ray that didn't show what he expected.  Curious enough to order an ultrasound for this morning.  Curious...

Despite these, she is eating like a champ.  No more NJ feeds; everything is by mouth now as long as she keeps up.  She is so skinny.  I'm not sure what her current weight is exactly, but her ribs are sticking out and her skin feels a little saggy.  She was always very small, in the 10th percentile of weight for age and below the chart on weight for length.  Now that she doesn't have to be starved for so many procedures and recovery, she should gain more...until chemo, where she may have trouble gaining.  But weight it not our biggest concern right now.

I had a moment where I realized that, in some unfair twist of horror, brain cancer might not be Scarlett's only challenge to overcome here.  All the other, more normal things we were concerned about before her tumor was discovered are still lingering.  Like allergies; I was worried she might be allergic to something when we took her to that last well check, but we never got to it.  The enlarged liver made me worry that there was something else going on, separate from the tumor.

I think that it would be only fair if brain cancer was the only serious medical condition she has to face.  She should get some kind of karmic pass for no future illnesses.  She deserves it. Please, please, nothing else.  I can't take it.

We've got a busy day today: another MRI (#7), liver ultrasound and hopefully a move.  Tomorrow, Auntie Lindi is babysitting while Chris and I go back to Stanford to meet with the neuro-oncologist about the plan for the next few weeks.  It's going to be an intense meeting, but we are actually a little excited to go somewhere outside the hospital together...it's a sad excuse for a date, but we'll take it.

Moving On Up

Yes!  We are currently awaiting our big move back to the regular floor, out of ICU!  We have been in ICU for two full weeks.  I know that many families were here before us and will stay much longer, but we are ready to bid this place adieu!

Scarlett continues to amaze everyone.  She is eating by bottle every few hours in addition to NJ feeds.  She is down to just her PICC line, which can be used for all her medicines, as well as to draw blood for labs.  The big news yesterday was that both cerebral spinal fluid drains were removed.  These were tubes that were stitched directly into her skull that drained excess fluid.  She is circulating and absorbing fluid well on her own for now, so they decided to remove the drains so that we can hold her and feed her.  She may still need a shunt; they will decide later this week.  She's not a big fan of being held much right now; I think she is uncomfortable being moved.  However, we'll ease her back into it!  

Now, she is stable and ready to be moved up to the floor, where the care is less urgent and there is much less drama.  We will be able to eat in the room, make phone calls and have more than one visitor at a time.  Whew!  It's been so confining in ICU, for Scarlett and for us, even though we started cheating with snacks and texting a while ago...

I realized that we have a lot to adjust to once we are more responsible for her care again.  We haven't had to wake up in the night for much in the last two weeks.  We haven't had to feed her on demand, or even do obligatory breathing checks like we used to.  Taking home a "sick" baby may be much more difficult that living in the hospital.  Nevertheless, I want to take her home, let her snooze in her swing and get her toes licked by our dog.

Eating

Not much has changed today for Little Miss.  She began on NJ (naso-jejunum) feeds of breastmilk last night, and today has been cleared by OT to eat 1 oz. every 3 hours by mouth.  She chugged the test bottle so fast, the OT felt bad she couldn't give her more.  We have to ease her into full feedings, eventually maybe nursing, because she may have trouble swallowing and breathing while she eats and could choke.  We can't sit her up to burp her or to clear her if she chokes, so we have to start slow.  But, slow and steady works for me!

Someone here on the blog gave me a tip to Google "breastmilk HAMLET" and it was astounding!  A recent study from Sweden showed that a compound in breastmilk, when passed through the infant digestive tract, can kill cancer cells.  It was specifically tested on the type of tumor Scarlett presumably has (we're still waiting for the pathology report to confirm).  This has given me a renewed energy for pumping...if it helps to kill the cancer, I will do it for the next 5 years.  Even if it is a long shot, I'm on it.

As for momma and daddy, we're eating well around here.  If you're not from the Bay, you probably have no idea where we are.  Even though we both grew up locally, the hospital's surrounding neighborhood is new to us.  We are right on the edge of Oakland and Berkeley (across the Bay from San Francisco).  There are great restaurants just a short walk from here, and we continue to explore as we can.  The hospital food is lacking, to say the least.  Children's Hospital = children's food.  I've been living on chicken fingers, quesadillas, tater tots, burgers, pizza and broccoli for good measure.  When we go out, we try to get real food.  Our favorites are Genova Deli, Scream Sorbet, and Bakesale Betty.  There is also a Whole Foods Market not too far away, so we get some goodies there too.  Hopefully we'll get to more soon!  

Three Months

Scarlett is three months old today.  On October 16, we welcomed our beautiful girl to the world.  I asked the nurses to change the ID label on Scarlett's bed to show "3 Months" instead of "2 Months 14 days" from her admission.  She is growing and changing every day, despite the trauma of surgery and hospitalization.

Tomorrow marks one full month since Scarlett's tumor was identified.  One month since our baby was considered healthy and normal. What a month it has been.  She was home for 6 days in the last month; 24 in the hospital. 5 MRIs, 2 CT scans, 5 EEGs, 3 surgeries.

But we have had great progress already this morning.  She was extubated (the breathing tube removed) a few minutes ago. She had one annoying IV removed from her kicky foot.  We got a report that she has had no seizures in the last 24 hours, so the EEG contraption will be removed.  I have heard rumors of catheters, arterial lines and CSF drains getting removed, but I am not going to count on it until I see it happen.

Here's to another month!

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!

Finished

She's back in ICU. The tumor is gone. All 4 limbs are moving. We are waiting to see her, but she's okay. Thank you all for waiting with us.

Update V

Yes, we're still waiting.  They keep telling us they are almost done, closing, everything's fine, almost there.  We're going bananas.

Update IV

Still waiting to talk to the doctor, but we heard she is doing well and they are finishing up. 

Update III

Not from the OR, but our nurses tell us they have been updated that the surgeon is beginning to close and we can expect her back in 1-2 hours.  No guarantees, but we're happy!

Update II

OR called again, and all is well.  Everybody together, take a deep breath!

Edit:  They did not tell us how long it would be today, but we are expecting close to 12 hours like last time.

Update

She's been in for 3 hours. We finally got a call that all is well. They have finally begun the official surgery. More to come

Here We Go

We just passed off out beautiful girl with the surgery team. She was calm and ready. We will try to update as much as we can. Think happy thoughts!!

Couldn't They Just...?

As soon as Scarlett's tumor was diagnosed, everyone in our families became brain surgeons.  Everyone had a plan for how they would cure Scarlett, and it always started with "Couldn't they just..."

• Couldn't they just operate?
• Couldn't they just do chemo or radiation?
• Couldn't they just suck out the tumor?
• Couldn't they just chop out little pieces and let her brain grow?
• Couldn't they just kill it with lasers?

Obviously, we are not a family of neurosurgeons.

It was really hard to hear all of these pseudo-options because it made me feel even more helpless.  Especially early on, when there was very little hope of any possible treatment, I wanted everyone to be at peace with her prognosis and enjoy her.  I wanted her to be surrounded by happiness and laughter for however long she had.  False hope of a cure was not helpful to me or Scarlett.

Getting the second surgeon's opinion was one of the scariest parts of this whole process.  We tried to prepare ourselves for what we expected him to say; we kept saying to each other, "It can't get any worse."  If he couldn't operate, then we already knew what the path ahead would look like.  But I was terrified of what it would be like if he changed the plan, gave us hope after I had made peace.

Of course, we were so grateful to hear there was a chance for Scarlett to come through this.  It was shocking and scary, but also gave me a new energy and determination for her.

Once there was a plan for treatment, the Couldn't They Justs faded away.  We are all committed to providing Scarlett with whatever she needs in the future, but we leave the neurosurgery to the doctors. 

Alone

Still doing great!  Catheter came out yesterday.  Blow-by oxygen was stopped (it was annoying and loud, with very few results).  Swelling is greatly reduced, so her left extremities are moving more freely.  She gets drips of milk by mouth, but is taking full amounts through the nasal-jejunum tube.

Her newest prescription:  being held 30 minutes 3 times a day.



Tomorrow she has a stealth MRI to map out Friday's surgery.  There is no way to know what will happen after surgery, so we just have to wait and see.

Last night, I drove home by myself for the first time.  I haven't been alone since Scarlett was first hospitalized on December 17.  I have been too scared to be alone with my thoughts.  Being alone means I am not distracted by conversation, and my brain takes off into the "what ifs".  The long drive (about an hour in traffic last night) is too much for me sometimes, but it is worth it to go home and rest.  The hospital is not at all restful.  Even if I sleep, I don't relax.

I tried to go to the grocery store to find something to eat before I got home.  I walked around the entire store, too distracted by the possibility of running into someone I knew.  I have been so isolated I haven't had to really talk about Scarlett to anyone who isn't intimately familiar with her condition.  Even casually at the hospital cafeteria, when someone asks "How are you?" and I am at a loss as to how to answer.  It's too complicated to explain everything, so I just lie and say I'm doing well.  Facing the looks of sympathy and consolation from close friends is much more difficult.

I left the store with nothing, and stopped for fast food instead...I'm eating like a kid of vacation lately, not taking the time to make healthy choices, but eating whatever sounds best at the moment.  It's bad for my milk supply, which I am determined to keep up in some capacity.  It is a huge struggle to pump regularly in the hospital, but I keep at it because I know breast milk is best for her, especially as her immune system is weakened and her little brain has so much work to do.  We keep storing it in the freezer so that when she's ready, there is plenty.  I don't foresee nursing working too well, though the occupational therapist wants me to try.  It was always a struggle for us, so I don't know if Scarlett will have the patience to work at it.

I would like to THANK YOU to everyone who has sent Scarlett or us a gift.  We have gotten some lovely gifts that are greatly appreciated.  I don't know always who they are from, but I wanted to say how wonderful it is to receive them.  We are so grateful to all the love and support being sent our way.  We are photographing everything for Scarlett to see one day how loved she was throughout her treatment.

Leaps

I cannot even describe how amazing this baby girl is.  In just the course of the day, she has made huge improvements, bowling over the doctors, nurses and therapists.

This morning, her eyes were both drifting to the left, having a hard time focusing or staying centered.  Tonight, almost exclusively centered and watching momma!

She took her pacifier today, sucking strong!  It took a little of her favorite snack, Sweet-Ease, but she's on it.  The occupational therapist tried to take it out, and she held it so tight he couldn't get it.  They let me give her a little milk to practice swallowing again (it's been 6 days since she has eaten by mouth).

Then, magic: she started cooing today!  I was making a few phone calls in the hall, and when I came back, the nurse was all excited.  Scarlett was laying in her bed, just cooing and talking to herself.  It's a high-pitched kitten sound, and pretty much the cutest thing I have ever heard (appropriate, since her other nickname is kitten).  I think she likes the sound of it too.  She must be bursting with stories to share with us.

The last EEG showed no seizures, so that medication has been reduced.  They don't expect them to return, though new ones could emerge.  There is not evidence of a stroke, but they cannot be sure since they cannot observe much physical change.  They tell us that no matter what they see in the MRIs or EEGs, they are really more concerned with what she does and how she acts.  The brain, especially such a young one, is unpredictable and relatively unknown to even the best doctors.  There is infinite possibility of how her brain might redistribute the tasks of the damaged hemisphere, more so than any adult brain ever could.  They cannot predict how she might develop in the future, and they are so impressed with how she has handled the trauma so far.

We are absolutely amazed by her progress in such a short time, and it only gives me hope as to what joys lie ahead.

Healing

Scarlett has been doing well since her first surgery.  It has been 4 days, and she is starting to look like herself a little more each day. 

The incision is healing well, thought it will be re-cut in surgery Friday.  No brain bleeding after sugery, which was a concern.  Sub-clinical seizures were still prevalent, so anti-seizure medications were increased, but today's EEG will hopefully show improvement.

The swelling has decreased a lot, so she can now open both eyes.  She doesn't make much eye contact or track anything, but I think she does look at us.  Her left eye was not reacting to light yesterday, but today it is. 

Her left arm and leg are regaining some motion.  She swats at the doctors and nurses when they pry open her little eyes (that's my girl!)  It's funny to watch, because when she is calm, they observe no motion, but the second their hands cross into her bassinet space, she opens her eyes and gets her arm moving, as if she's been spying on them all along and knows what's coming next.

I am pretty convinced that the IVs and swelling are a main cause of the stiffness in her left side.  The doctors agree, but they don't know for sure if the seizures are affecting it as well, so we just have to wait.  Meanwhile, her right hand is actively seeking contact with someone's finger or a fuzzy toy whenever she is awake.  I love to watch her fingers start searching, but I try to fill them with my finger or a kis as soon as I can.

The surgeon who assisted in surgery, and will again be there Friday, took time to explain the newest MRI images.  It is amazing to see what her brain looks like now.  My best explanation is that the original scan showed the tumor to be about as big as my fist.  Now, the remaining tumor is about the size of my pinky finger in the fist.  The rest of the tumor space is now fluid and air...we joked she's truly an "airhead" now (have to keep a sense of humor sometimes!!!)

This surgeon explained more about why they stopped the first surgery when they did, and why they agreed to take on such a risky case in the first place.  Scarlett's tumor had a very defined boundary from the brain.  This led to it basically peeling away easily in surgery (as "easy" as an 12 hour brain sugery is.)  This gives a much better chance of fewer malignant cells being left behind, and an overall better surgical outcome.  There are two dangerously large veins connected to the remaining chunk of tumor.  Somewhere near to this is likely the origin site of the tumor, where it began and is probably more integrated with brain tissue.  They could have, as he put it, been greedy, and gone for the whole thing, but may have run into dangerous territory late at night when she had been sedated for too long.  They were being cautious, and we are grateful for that.

Basically, this all boils down to the brutal truth: the next surgery is going to be hard and long, even though it is far less tumor to remove. 

However, she is strong and handles anesthesia well.  Waiting until Friday stinks, but gives her body a chance to rally and heal, so it can continue to fight through the next surgery.

Scarlett by the Numbers

12 : weeks old yesterday
4.1 : kilograms weight (9lbs 4oz)
23: inches length
20 : days in hospital since her birth
24 : percent of her life so far in hospital (3 for birth, 6 at LPCH, 11 and counting at CHO)
2 : surgeries so far
2 : IVs currently attached
5 : medications being administered (2 anti-seizure, steroids, tylenol, albumen)
3 : MRIs so far


4 : Hospitals contacted and consulted about Scarlett's case (Lucile Packard at Stanford; Children's Hospital Oakland; University of California San Francisco; St. Jude's Children's Research Hospital)
5 : Doctors on the surgical team
2 : Surgeons who told us Scarlett would likely not make it through surgery

20-25 : percent of tumor left to remove
5: days until next surgery (Scheduled for Friday, January 14) 

A smile

A lot of things happened today.  We spoke with one of the lead surgeons about Scarlett's brain with yesterday's MRI scan, we took out her intubation tube from MRI and put on a CPAP machine to keep her lungs from collapsing, we started feeding her mama's milk again through a tube, we were moved to another room, and some other things.

But the most important thing that happened to me today is that Scarlett, swollen and all, smiled at me while I was talking to her.

Found

I had been hoping that, with this blog reaching so far, we might find one other family dealing with this incredible rare, incredibly scary tumor.  Yesterday, they found us.

Riley
Abby

I think I may have let myself dream again last night.

Today

Not much new information today.  We know she is having frequent small seizures in the right hemisphere, which is the opposite side from the tumor.  While this is not unexpected, it is not easy to hear.  We can't see signs of the seizures, though the doctors sometimes notice some staring or stiffness that they attribute to them.  She is now on high doses of phenobarbitol to reduce the seizures, so hopefully that will make some difference.  

The neurologist, who we have learned is the most clinical and least gentle of the doctors we have talked to, mentioned she may have had a stroke.  We won't know until the MRI this afternoon.  I'm trying not to worry about it yet, but I'm failing.

As Chris mentioned, there is also a large bubble of air in the now-empty space in her head that was once tumor.  They showed us the CT scan, and it basically looks like someone used a spoon to scoop out the majority of her brain.  Air doesn't seem to be such an unlikely occurrence, and as difficult as it may seem, I am not worried about getting rid of it now since they are going to open her up and let more in next week anyway.  It's funny how different my threshold for "serious medical issues" is right now.  Air bubble in brain?  Meds can stop her breathing?  Seizures?  Sounds good, whatever has to happen to get to the next step.

I keep trying to remember that what we see right now is pretty meaningless.  Nothing is certain, and there is no way to know what the long-term effects may be.  Paralysis today may be resolved tomorrow.  Swelling is always changing.  Nothing we see today means anything for her future.

My biggest concern, and the most difficult, is pain management.  How do you know when a 2 month old hurts?  She can't say "Ouch!", she can't point to where it hurts.  She can't even cry right now.  I slept next to her all night, and it was pretty quiet.  When I woke at some point, I heard her whining a little. I asked the nurse, and she thought it was just snoring...I didn't believe her, but what do I know?  Her heartrate has been high, understandably, so I just watched it closely.  A few hours later, the next nurse came in and noticed all kinds of things were wrong - a stick-on heart monitor was yanking, her catheter was pulling and an IV in her foot was leaking.  She was hurting, and the new nurse couldn't believe she hadn't been given pain medication yet.  It was devastating.  Now I am learning what to look for, what I can fix myself and what the nurse can do to help.  She should not have to feel pain, and I am going to watch for it as best I can.

For those who have asked, we have a PO Box now.

Chris, Brandi and Scarlett

P.O. Box 1573

Newark, CA 94560

ICU and Surgery Ahead

Inside the ICU there is no cell phone usage, no WiFi usage, and no stopping.  Things beep, respirate, alarm.  Code Blues are called, people run.  Still, there is an eerie calm.  Nurses seem to lope from station to station, all too used to this.  Tonight Brandi sleeps in the ICU, and I've gone home (tomorrow we'll switch).  Only one is allowed in the room overnight.

The day began as smoothly as any day might that happened to sit between two brain surgeries.  Scarlett looked better; her swelling had dropped and we were able to catch little glimmers of her eyelashes poking through.  She had three arterial lines, an intubation tube to breathe, and a plethora of other tubes and monitors that I don't want to gross you out with.  As the day wore on, we took turns sitting outside to field emails and phone calls, and inside we watched her right eye beginning to peek open.

Our surgeon came in to let us know his plans: an MRI tomorrow to provide a new geographic guide to a surgery on Monday or Tuesday.  This will be the final surgery with any luck.  "Monday or Tuesday" - the sort of casual time frame I used to assign to paying bills.  Brandi and I would much prefer something like "Tuesday, 9:35 AM," but we can't fight every fight these days...

The afternoon became anxious.  Scarlett was having "sub-clinical" seizures, a common thing post-brain surgery, where the brain neurons seize in a minimal way, without outward bodily signs.  These seizures began to increase to 4-5 per hour, and so her anti-seizure medication was upped.  This much anti-seizure medication presents a risk to her stopping breathing, but, as it was explained to us, that's not really such a big deal given where we were.  Bizarre, but true, and so Brandi and I agreed.

Also, we all had noticed her left arm and hand weren't moving a lot.  So it was in the afternoon that all of this added up to a call for an immediate CT scan.  Brandi and I were ushered aside, and we helds hands and watched a mobile CT scan machine, which looked maybe like a time machine, roll in.  Scarlett was picked up, and I remember hoping they didn't accidentally rip any of the delicate lines out of her skin.  They placed her in the CT machine, and after 20 minutes of scanning, the circular machine was rolled away, and we were allowed to comfort her again.

We can't really pick her up.  I wanted to, but there's just no way to hold her without breaking something attached to her.  So all day we'd placed our fingers in her right hand, which was gripping, and her little right foot, which can also grip with her long slender toes.  I placed my hand on her belly, to let her know I was there, and then both of her eyes began to open!  Brandi and I were so proud.

We waited for an hour, speculating what might explain Scarlett's lack of movement.  We both hoped it wasn't neurological, and we had plenty of reasons to believe it.  Her left side was more swollen, and she had more lines and boards restricting that side.  Surely this could explain it, right?

One of the neurosurgery team came in to tell us the news.  It was not what he had feared: brain bleeding.  What he did find was air - a giant air bubble composed of nitrogen.  Still no explanation for the lack of mobility, but that issue was tabled because there was no emergency course of action that needed to be taken on it.  The solution for the air bubble?  Tilt the head so that it came in contact with the brain, and increase the oxygen supply.  With that, our neurosurgeon team member explained, the vessels in the head would simply carry it away with the oxygen into the blood stream, and the bubble would disappear.

We looked at our daughter's CT scan, a gaping hole filling with half liquid, half nitrogen, and shrugged in agreement.  Sounds good, we guess.

Then, with the crisis apparently over, we settled in and I helped her make a cozy folding bed.  She has a t.v. there, some mindlessness of which I'm glad for.  I left hoping nothing else would happen while I'm gone.

Our nurse was very nice, very casual.  They all were like this.  The nurses and doctors moved from machine to clipboard to computer, as nonchalant as they could be.  They joked with each other and calmly carried out life saving scans and checks as though they were doing a load of laundry.  Just another day in the ICU for them.  Brandi and I meanwhile check another day off before the final surgery that can set us up to remove this thing.  If we can make that far, then maybe we can make it through Chemo.  If we can do that, then maybe we can win this thing.

Oh Scarlett, keep fighting baby.

.

The Day After

WOW!  You guys are amazing and so wonderful to have as a support.  We had over 100,000 views yesterday as people were checking in on Scarlett's surgery.  That is UNBELIEVABLE.

Last night, we saw her in PICU and she was doing very well.  She was very swollen and pale, but looked okay overall.  She has tons of lines in and out - PICC in upper arm, arterial blood pressure on foot, IV on other foot, pulse ox on hand, blood pressure cuff, catheter, respirator in her mouth, and - most absurd - a drain coming out of her head for cerebrospinal fluid.  She is also getting blood to continue replacing what was lost in surgery.  Her head is bandaged, but it mostly looks like a beanie hat.  However, I did see her little head today and the difference is amazing; the dark, bulging veins are gone, the bruising is lighter and her biopsy site, which was bulging off the side of her head, is now flat.  The pressure is released, and that was the most critical immediate need.

Despite the way she looks, she is definitely still herself in there.  She is kicking her least-restrained foot, and her toes curl around our fingers when we touch her.  She tightens her little hands around our fingers and tries to open her eyes every once in a while.  Her little heart rate skyrockets every time the nurses move her around; this is exactly what she did before, except it was accompanied by screaming.  That's my girl!

Since she was sedated and asleep, we decided it was best to go home and rest and shower last night while we had a chance.  While we were there, we got to see some of the precious and wonderful gifts we have received.  While Scarlett was in surgery, she got a flower arrangement that was a yellow smiley face.  We saw it being delivered when we went for lunch, thought it was so cute, and then were shocked to see it was for her!  She also received a lovely pink fleece prayer shawl blankie from a church in Alabama.  At home, we had a beanie knit from home-spun angora - can't wait to put it on instead of the bandages.  Then, there was a whole basket of goodies from my coworker Devon - magazines, books, chocolate, popcorn, a DVD...we're set for a day at least!  :-)

Once we oohed and aahed over everything, I had a glass of wine...and nearly passed out, I was so tired.  The constant rush of adrenaline I have been running on finally ceased for a short time and I slept well. 

Now we're learning the ropes in PICU.  This is much different than when she was in PICU before, since she was still "normal" then.  Then, she was just having vitals monitored, blood work and tests.  Now, she is one of the more serious cases in the unit.  This unit is secured; we have to buzz to get in.  Everyone must handwash and sanitize at the door.  It's a very high-risk unit, so they are extremely cautious.  She has her own nurse who is constantly draining, cleaning, adjusting, injecting and generally puttering around her bed.  There is no food, no drinks, no phones, no computers allowed in PICU.  This poses a serious lifestyle change for Chris and I, even compared to what we have done in the hospital the last few weeks.  We're taking turns trying to respond to the tons of messages we receive, calling family and remembering to eat while the other sits with Scarlett.  We are expecting to be in PICU for at least two more weeks, so we're trying to find ways to get comfortable and try to make the best of it.

Today, she is back on EEG to monitor for seizures.  Fingers crossed on that one; the doctors explained that seizures are likely and common in post-surgical brains. She will have another MRI tomorrow as a "stealth" for the next surgery, which is being scheduled for Monday or Tuesday.  It's another long day of nervous waiting, but we know she is handling it well.

News

Ok everyone....breathe.

It is 8:55pm PST.  Scarlett is out of surgery. She is doing well and is stable.  We saw her as they wheeled her to PICU and she is moving all 4 limbs and coming out of sedation well.  Hooray!!!!!

However, we're not done.  The surgeon removed 70-80% of the tumor.  He felt this was somewhat easily and successfully removed and he could have continued, but he was concerned about her blood loss.  She lost twice her full volume of blood (her entire blood volume is equivalent to a can of soda).  She was successfully transfused and is stable, but he wanted to be conservative, so she will go back into surgery next week to remove the remaining tumor.

We will see her again shortly.  I am so proud of my feisty little girl!!!!  Thank you to everyone for keeping us raised up; we're not out of the woods, but we are feeling confidant that we made the right decision for now.

Update

We just got our first update from the operating room.  All IVs and lines are in, she is intubated and surgery has finally begun.  It has been 3 hours since we handed her off to the nurse.

We tried to absorb every minute with her this morning.  We chose to have the nurses give her morphine through the night to help ease her and let her sleep, so she was very groggy and sedated all morning.  I slept a few hours, but Chris did not.  At 5am, the nurse had us bathe her one last time to make sure she was clean.  A while later, the EEG was removed, so we got to feel her fuzzy hair one last time before it gets shaved off.  

We sat together at the window and watched the sun come up.  When it was finally time, I got to hold her as we walked down to surgery.  The nurse there wrapped Scarlett and I in a warm blanket as we discussed the procedure with the nurse and anesthesiologist.  I was so proud of myself for not crying when I had to hand her to the nurse for the last time.

We ate breakfast and packed up our room.  She has a bed in the PICU now for after surgery.  It will be a very intense few days as she recovers and we are very limited in when and how we can visit.  

We met briefly with the neurologist this morning.  When we were waiting for surgery, the nurse told us the EEG had been clear, no seizures.  Unfortunately, that was not true.  The overnight EEG showed that she is having a few very short, very mild seizures around the tumor.  We can't see any signs of them, and they are mostly in her sleep, though the nurse did catch one.  I can't believe we didn't know this was happening.  We won't know what kind of damage or effects this has had for a while, so it is just more information to add to her file.

I'll try to keep you updated as best I can.  We are a bit homeless now, with no room to settle in (PICU will be just a curtained section for one of us, no room, no table, no phones, no computer allowed).  We are spending the day in the waiting room that had the most chairs.  It's hot and noisy, but Chris is sleeping, my mom is here and I can write and read....that reminds me:  I have been reading The Help by Kathryn Stockett.  It is very good and has kept me quite engaged, despite the frequent distractions.  Highly recommended.

More to come.  Please pray.

The all-nighter

Tonight, Brandi and I do not sleep.  Instead, as Brandi reads 'Matilda' (her favorite book) to our sleeping Scarlett Grace, I think a thousand thoughts.

I think about the oddness of being interested, fascinated even, in the neuroscience, theory and practice, the icky and not icky medical details, memorizing the jargon, memorizing the names and faces of the doctors.  I realize that Brandi and I, in a very short period of time, have met some of smartest people in medical science.  The Heads of world famous neurosurgery, oncology, endocrinology.  I wish I could have learned more.  A part of my head is just interested, completely detached from what we're dealing with.

I think about our window view.  It's like this: Directly below us - a flat ugly roof and industrial vents - the hospital's continuation.  For those that live through disasters or tragedies, it is so easy to see the ugliness of what is happening.  Then beyond that, highway 24, it's cracked pavement wrapping around us and then speeding off in the direction of Walnut Creek.  This is the vantage of the rescuers, the heroes, the medical workers, I imagine the Red Cross, the doctors without borders...Then, apartments and houses that pepper the Oakland and Berkeley hills are visible, sparser and sparser as I look upwards.  For this view I assign the onlookers, the media images, the distance of those that put the event into horizon and perspective.  Finally, beyond the highest houses, The Fog.  It partially obscures more hills in the receding background, beautifully idealizing them into mere concept, the "hill-ness" of hill, and for this I assign the notion of tragedy itself.  Platonic, Picturesque, beautiful if sad.  The "meaning" of tragedy is here.  I wonder which vantage point is more accurate, more meaningful.

I think about what waiting for 16 hours will feel like.

I think about Scarlett's face.  I've been trying to memorize her features, her little expressions she makes, the color of her skin, the way she smells, the feel of her skin on my lips.

I'm not at all sleepy, but I am tired, because clearly I'm rambling...

Surgery Schedule

I feel obligated to keep you all updated, as you have been riding this rollercoaster with us.  Daddy is rocking Scarlett, so I have a minute to type.

Tomorrow will be an early morning.  The anesthesiologist will come in around 5 to discuss and for us to sign consent.  Scarlett will get a final bath to make sure she is squeaky clean.  They will disconnect all the EEG monitoring electrodes.

Surgery is scheduled to begin at 8am PST.  We will walk her down shortly before that to hand her off to the surgeons.  They tell us it will take a while to get started, but we will get a call once they begin, and then no longer than every two hours.  They hope to be done before midnight, but will stop then either way. 

Technically, the procedure is called a craniotomy, which means the skull will be opened.  The incision will be a large crescent over her left ear.  If she does not tolerate anesthesia well, or has too much blood loss, they will stop and not go back in for a few more days.  If they have to stop, they will leave the bone off, wrapped in the freezer, and loosely cover the opening.  This was the most sickly fascination fact of the day (and sorry for those of you who didn't want to know that, but we did).

I was sure to ask what she would look like when I see her next.  She will have another mummy head wrap and a breathing tube, as well as a drainage tube from the top of her head.

We heard a lot of information today.  Some of it was not good news...neurological symptoms are emerging.  She does not visually track anymore.  She does not move her head much, and can no longer lift it.  Her reflexes are uneven and somewhat abnormal.  My heart broke a little when they told us her optic nerves maybe damaged and they don't know how much she is seeing.  I had been worried about her eyes for days, but was told they checked out fine.  Things change fast.
...

It's been a while since I started writing this post.  Chris and I have been taking turns rocking and feeding and reading and snuggling.  She's fast asleep now, and we've hit the mark where she can't eat anything else.  The rest of the night, we hope she get some rest and we will try to do the same. I'll post updates if and when I can tomorrow, but I know the prayers and positive thoughts will be floating our way, so we thank you.

Scarlett's Week in Pictures

Scarlett has had a very eventful week.

Before coming to the hospital, we had a photo shoot with our friend Krista of Krista Lucas Photography.

This is her scarlet butterfly ornament we found on Christmas Eve.

This is the last smile she has given us; she's not in the mood.  We are so grateful to have this picture.  I hope to see another one soon.

In the hospital, she has learned to hold her bottle a little.

This morning, they marked her head with tags that will act as GPS as they operate.

Then, they brought in the EEG with camera observation to watch her brain activity and behavior in case of seizures.  it made our tiny room even more cramped.

They added all the EEG censors to her head, and wrapped it mummy-style to keep her from grabbing the wires.  It is quite the head accessory.

You can also see the new blankie and teddy that the radiology department.

She looks so peaceful, and she is.  She hasn't been fussy much at all, and that is so comforting to us.

MRI

Just a quick update, more to come later today...

MRI went well.  Scarlett was sedated and intubated, and came through the procedure easily.  She even got a fuzzy teddy bear, new crocheted blankie and a book from the radiology team.

We have had an influx of specialists and departments come to see us today.  Endocrinology, Neurology, Cardiology, all looking to establish baselines before surgery.  

She is all hooked up for monitoring, but we have a meeting with surgeons to prepare for tomorrow morning.  We'll post more as soon as all the doctors give us a few minutes peace.  :-)

Club

Being in the hospital is strange.  It is a lonely and isolating place, yet I am surrounded by other parents who know too well what we are dealing with.  I have come to the realization that we are the newest members of one of the worst clubs on Earth:  Parents with Sick Kids.  It doesn't matter what it is that the child has; it is torture for the parents.  Yet, I think there may be a special medal or level of membership reserved for those of us with the really bad stuff, the conditions that don't have a pill or injection or regiment that leads to a cure.

We are on the oncology and hematology unit, reserved only for those with horrible blood diseases and cancers.  It's a small place, but it's bustling all the time.  I have met moms of kids with sickle cell anemia, leukemia, hydrocephalus and a few other diseases.  Scarlett is not the youngest, or the sickest.  She may be the loudest...

One family, our first roommates, travel from out of state to receive care on a regular basis.  They stay overnight or for weeks, depending on the next course of treatment.  As the mom toured me around the hospital after we were admitted, she told me how she was missing her other son's birthday.  They were paying for a taxi back to the airport, so my parents drove them instead.  Her son is nearing the end of treatment and is doing well.

Our second roommate was a little boy with some kind of blood disease, I didn't know what.  he was admitted in the middle of the night.  I overheard him the next day: "Mom, I just want my normal life back.  I want to go back to the way it was.  I want to ride a roller coaster.  But I can't because my platelets are low, low, low!"  I didn't hear or see his mom's response, but I felt the pain for her.  I can only hope that Scarlett is done with this before she can talk.

Our newest roommate is 10-month old with cysts in his brain.  His condition was diagnosed in utero by ultrasound.  His mom, who may be barely 20, was given the option of termination at 5 1/2 months pregnant.  She chose to leave it to God, and her son is thriving.  She detailed all the procedures he has had since he was born...he has spent months of his short life in hospital rooms like this. Now, he may have an infection that is causing swelling around his brain.  She tries to keep him calm because, when he cries hard, pressure builds up in his brain and causes problems for his shunt.  She cried with him as they continually tried to get an IV in, and then found new strength and started telling them that no one else would stick her baby tonight, he was done.  

We swap stories like war veterans.  Diagnoses, emergency visits, IVs, surgeries are the shrapnel we have under our skin.  We all know the darkness that the others have faced.  It doesn't always look the same, but it is so dark, so haunting, it leaves traces that are hard to hide.

There is a worse club: those that have lost the battle.  I am still fighting, and I am not ready to trade in my membership yet.

Contributions

Hello to all,

So many people have asked how they can help us.  By this, we are so touched and greatly encouraged.

Initially, we set up this blog to share our story and experience, as a cathartic release for the tension and shock.  As such, we didn't really have a plan in place for how others could donate to us, though we do have a great need.

So now, we have up a donate button through PayPal for those who want to contribute.  A couple of notes about this:

We are not a non-profit, though we are working in the future to be covered under the umbrella of a non-profit.

Secondly, we want to offer you our assurances that all money will be used judiciously for Scarlett's care and comfort.  If there is any money left over that isn't needed in this way, we intend to donate it to a non-profit charity.  When we get to that point we'll certainly communicate all of this.

In just two weeks, we have surpassed 100,000 views.  Your prayers, thoughts and support are the bright spot in our days.  Thank you so much.

~Chris, Brandi and Scarlett

Signs

We did not know there was anything going on with Scarlett when we took her to her appointment.  Now that we have more information, there were a few signs that we see now and would not have known to look for.

1.  Bruise:  This is the only thing we knew about.  A small bruise on her forehead that stayed purple and red for a few weeks.  We were concerned, but had no idea what it meant.

2.  Veins:  Everyone always mentioned how her head always was very veiny.  All of the blood vessels are very visible, especially on the left side where the tumor is.  We always thought, and were even told by doctors early on, that it was just her thin, fair skin.  It is actually caused by the pressure exerted on her skull by the tumor, as is the bruising.

3.  Head control:  The week before this all began, we were at an infant massage class (highly recommended, by the way).  The nurse who led it mentioned that Scarlett was not turning her head equally, so we needed to do more tummy time exercises.  When she was born and in the early weeks, Scarlett moved her head a lot and we were always warning people when they held her that she looked wherever she wanted.  Her ability to move her head has dwindled, and now she usually turns to one side and can no longer lift her head when on her stomach.  Her head lolls to the side of the tumor because it is heavier than it should be.  A physical therapist is already consulting and has given us positions and tips to help. 

4.  Eyes:  We just started to notice yesterday that one eye is not centered anymore (good catch, Daddy!).  The surgeon looked today and said that is seems there might be some pressure on the nerves to her eyes, causing the off-center eye. 

5.  Fontanel:  The soft spot on the top of Scarlett's head was "full" at her appointment.  I had no idea what it should look or feel like, but it was enough that the first doctor noticed right away.  

We are hoping that most of this will be fixed by the release of pressure after the tumor is removed.  I try not to feel too guilty for not knowing to check these things; there was no way to know.

Hospital life is not settling well with Scarlett this time.  She is very fussy, and the nurses and doctors keep trying to give her different things to ease it.  We are trying to take turns going home to sleep, since only one of us can be comfortable in the hospital room.  It will be hard once Chris has to go back to work; luckily my family is coming to give us breaks.  Mostly, we're just anxious about what comes next, and watching for any signs of problems before surgery.