Friday, December 31, 2010

New Years Eve

We got almost no sleep last night.  Little Miss did not sleep, so neither did we.  Unfortunately, neither did the 7-year-old that shares our room now...we heard him complaining to his mom this morning!  "She cried all night and now she just cries all day!  This is the worst!"  Sorry, buddy.

It's 1:00pm here, and Scarlett has already had a busy morning.  A bunch of doctors checked in to give us a rundown of the next few days.  They inserted a naso-gastric tube through her nose into her stomach for additional feeding.  Chris and I resisted this as long as possible to be sure it was absolutely necessary, but she is not gaining weight fast enough, so down it went.  Now, she will receive about half her nutrition by the tube; she can still nurse and take bottles, too.

The neurosurgery team has already referred her for evaluation by many other services.  An ophthalmologist and physical therapist have already been in, and occupational therapy is scheduled.  So far, no one is noticing any deficiencies; her eyes are fine, hearing is fine.  She will likely need physical therapy as she gets older to help her range of motion, as she has stopped being able to raise or turn her head due to the weight of the tumor.

Otherwise, we're doing well.  Chris will sleep at home tonight, since there is nowhere for both of us to be comfortable.  The plan is to switch off every few nights, but I am not sure I can sleep at home with her in the hospital.

Happy New Year to everyone!  Thank you for all of your support, comments and prayers over the last two weeks.  We have had more than 85,000 views since the blog was started, so we know you are out there, and Scarlett is feeling the love!

Thursday, December 30, 2010

Settling In

Today Scarlett was admitted to Children's Hospital Oakland for monitoring until her surgery next week.  What a difference from our last hospital experience.

The best thing is that we were able to pack and plan ahead.  Last time, we didn't know we would be in the hospital, so we were totally unprepared.  My mom and sister shuttled clothes and toiletries to us.  This time, we cleaned the house, unplugged every conceivable appliance to save power ($$$) and left our house in good shape to return to eventually.  I walked with Scarlett to look at the house; her room with jellyfish dangling from the ceiling and the crib she has never slept in; her cozy bassinet next to our bed; the dog and cats who could tell something was awry.  I am hoping with all my heart that it was not her last day there.

As we checked in with admissions, we immediately felt the difference from the last hospital.  There, the staff in every department we dealt with, from financials to ICU, was caring and patient.  Here, we were treated as customers: "sign here, sign here, leave the pen, good luck".

I had a breakdown when I saw the room.  It is by no means a bad room, but so different from what we had last week that I was in shock.  We had had a large room with a window seat bed and a chair bed, our own bathroom and a sink, shelves, etc.  Now, we are in a shared room, where I was told the bathroom is for patients only (I told the nurse I would make sure it was available if Scarlett needed it...)  The teenager we were sharing with moved on shortly after we arrived, so we have it to ourselves, but otherwise, there is only room for one parent to sleep overnight.  The furnishings are old and worn, and it is dreary; we had to unscrew one lightbulb to turn it off.  Scarlett doesn't know the difference, but I sure do.  I know the room in no way reflects the care, and the nurses have been fine, but I felt a little bit of remorse.  This is a much older hospital, and it shows.

 We were lucky to meet our roommates mom, who gave me a quick rundown of the available services and a tour.  As we walked, we both shared the stories of how our children had been diagnosed.  Her son is fighting leukemia, and they are traveling from Nevada for treatment.  She was very kind and wished us well before they moved to their new room.  

Now we just settle in and get comfortable as they keep testing Scarlett to be sure she is up to surgery.  They are particularly concerned about the possibility of anemia; this would mean she needs a blood transfusion before surgery.

Wednesday, December 29, 2010

A New Phrase

Today, I decided to coin a new phrase:  "Mom Up".  I heard someone on TV say to "man up", and I thought moms have it harder.

To "mom up" means to do the right thing for your kid no matter how hard it is.  I told Chris it means to put on your "big girl pants" and do what has to be done.  It's getting up in the middle of the night to nurse a baby, or wiping poop off of every surface, or to walk around with barf on your shirt because there is more important stuff to take care of.  Today for me, this meant giving Scarlett her yucky medicine even though she hates it and gags and sputters, while I told her how good she is and how much I love her and how it's almost all gone.  I think this is what happened for my mom when she came into our PICU room after hearing bad news and didn't cry, but let me cry.  It's also the way my sister held her tiny baby Zoey for the few minutes she had with her.

Everyone tells me how strong I am and how brave we have been facing Scarlett's diagnosis and surgery.  I feel brave and confidant sometimes, but I am scared to death, too.  But being scared does not help her.  She feels my tension and reacts with her own agitation.  My calm and quiet reassurance is all I can do to make her feel calm right now.  I have to mom up and be brave for my baby.

Plan

Scarlett will be admitted to the hospital tomorrow, Thursday, for monitoring, fluids and supplemental nutrition until surgery.  They want to bulk her up as best they can and keep a close eye on her vitals as they prepare for surgery.

She is scheduled for surgery on Wednesday, January 5, 2011.  This could be the first of a few very long, very intense surgeries, depending on how her body handles anesthesia and surgery.  She has not had any problems the last two times she was under general anesthesia (for MRI and biopsy last week), so we are optimistic that surgery will be well tolerated this time as well, though it is much more extensive.

We can only hope and pray that we are making the right choice for our precious girl.  The doctors are clear that this is her only chance, so we are going for it.

Tuesday, December 28, 2010

Prayers

Over a week ago, a group of elders from My in-laws’ church came to the hospital to pray for my daughter.  It meant a lot to me.

We are both so grateful for the prayers and support of people all over the world.  Some have prayed for a miracle, some for peace and understanding.  It's all very touching to Brandi and me, whatever the prayers are for.

As for me, long before this nightmare, I'd given up on prayer. I’d prayed zealously, thankfully, openly, quietly.  For years my prayers for wisdom ended in silence.  My prayers for change and for miracles were met with no change.  I’d screamed prayers into my pillow.  I’d meditated openly, just listening.  My prayers of thanks for all I had were met with silence, although arguably I suppose those prayer were rhetorical…

In short, my prayers were negligible on a practical level, and so I got sick of doing it.  I don't remember when, but one day I told God, "you're obviously not listening, or uninterested in responding, or just not there. I'll keep my ears open, but I'm tired of barking in the dark. If you want something, I'll be here".

I had kept my promise since that time.

There's a 1/35,000 chance of someone being born with a brain tumor.  There's a 1/6,000,000 chance of someone developing what Scarlett has: a congenital glioblastoma.  It's so rare that the summary research of the leading Oncologist on the matter, our doctor, has only about forty cases to analyze in his research paper on the topic.  He and our neurosurgeon are trying a standard route: surgery-then-chemo; this works with other tumors on rare occasions, and we hope, will work with Scarlett’s ultra rare condition.  1 in 6,000,000.  What are the odds of contracting and then being cured of a congenital glioblastoma?

I am surrounded by religious people, like the elders who prayed for Scarlett, and so I am often surrounded by prayer.  When other people pray, I kneel and bow my head with them.  It’s respectful to them I think, and also – it’s less embarrassing to me.  It avoids the discomfort of explaining myself.

So the other night, I respectfully knelt with the elders of my in-laws’ church as they did what they thought they could do. They prayed for healing...for a miracle.  They prayed for understanding and peace and a number of other things.  They took turns praying, their hands on my daughter’s body as per tradition.  They prayed for the sorts of things I would have prayed for during a time when I thought prayer could do something.  And then, inspired in the interspersed silence, I said something out loud.

"Listen to me. I'm talking to you.  And by talking to you I am breaking a promise I made to you.  But I'm breaking this promise to make you a better one.  I'm praying this prayer to ask you to fix her. Take this away from her as though it weren’t there and make her well again.  If you do this, I offer you a better promise in return. This is a deal I'm making with you.  Take this away and I'll change what I believe.  I’ll follow you.  Take this away from her and I’ll do whatever you want.  I can do it. I'll do it if you do this. I broke my first promise to offer this better promise. Please, please, fix this.  I broke my first promise, but this second one is the last promise I can make or break with you."

And so with nothing to give my daughter except my own rationality, I prayed.  My own thoughts, my feelings, are nothing.  As long as she's fixed. 

So I prayed.

Whirlwind

How do I even describe our day yesterday?

We met with our oncologist at Stanford yesterday morning.  He gave us the official diagnosis: congenital glioblastoma multiforme.  This is an extremely rare type of tumor, only seen in a few babies every year.  It is highly malignant and aggressive, meaning it spreads quickly and is hard to eradicate.  He gave us a copy of a study he was a part of, and it discussed the grim reality we are facing - most babies with this tumor are gone within weeks after diagnosis.

He discussed the "menu" of treatment options: surgery, chemo or both.  It was quite obvious to us that chemo alone will not be effective against such a large tumor.  The neurosurgeon we had been working with had never presented surgery as a viable option.  However, the oncologist suggested we visit another surgeon across the bay who might be willing to look at Scarlett's scans and give us his opinion.  He made a quick call, and we suddenly had an appointment that afternoon with the neurosurgeon at Children's Hospital of Oakland.  The oncologist got us a CD-ROM of her MRI and sent us on our way, telling us to call him once we have made a decision.

As we drove across the bay, we started reading over the surgery report we were passing to the surgeon.  It was sickly fascinating to read the exact details of Scarlett's surgery, from the types of blades and placement of blue towels to the color of the tumor as it pouched out of the skull.  It ended with "no complications."

The neurosurgeon looked at Scarlett's MRI and surgery report briefly before coming to speak to us.  He immediately launched into his plan:  a radical surgery to remove every speck of tumor he could, followed by chemotherapy at Stanford.  The surgery is risky and long; 20 hours at least, and possibly continued in a second surgery depending on how she reacts.  A few weeks of recovery in the hospital before beginning regular chemo treatments.  He wants her admitted by the end of the week, with surgery on Monday or Tuesday.

He said it was our only chance to save her.  He feels that, unless we go forward with surgery, chemo is a waste, not to bother.

We were shocked.  We had been prepared for no option.  We had not expected a chance.

We have consulted with our other doctors at Stanford, and they agree we should go forward.  Today we will schedule her surgery for the first days of 2011.

Monday, December 27, 2010

Changes

When we were in the hospital, I started to think about all of the things I wanted to do with Scarlett, no matter how old she is or what happens.  I am trying not to let myself feel rushed into filling every day with experiences, but I am happy with some of the changes I have made.

We were reading mostly every day already, but I have started to read to her my favorite books, instead of just baby books.  We're halfway through Matilda by Roald Dahl, my very favorite story, and I am loving it even more as I read it to her.  She loves to listen as we rock in the rocking chair and she usually dozes off after a chapter or two.  With a teacher for a mom and a librarian grandma, Scarlett has been collecting books since before she was born.  I think Charlotte's Web might be next.

We play much more music.  Chris and I are both somewhat musical (him much more than me), so we are trying to listen to more with her, and sing when we can.  She has an iPod in her room (with a cool color-changing dock) and we play all kinds of songs.  Christmas music, Broadway musicals, classic rock, lullabies - it's all there, and we're adding more.  He favorite so far was Jimmy Buffet Christmas; definitely her grandpa's influence.

We're making plans to go to some fun places too.  We got tickets to the CA Academy of Sciences in San Francisco for Christmas; it has a great aquarium, penguins and an indoor rainforest.  We'll go to the SF Zoo soon.  We also want to visit the beach in Half Moon Bay and get her toes in the ocean.  We regularly visit art and science exhibits at local museums, so hopefully we'll still be able to drop by a few.  She's too young to really enjoy much of it, but we hope to have a chance to go again when she is older.

It's hard not to feel like it's all now-or-never, but I do.  There are many things I may never get to do with her, so I will do as much as I can while I can.

Sunday, December 26, 2010

Christmas

We had a wonderful Christmas with our families.  We were able to take Scarlett out just as we would have, so we went to Christmas Eve services at church and to some friends' house for champagne after.  Before church, I was fixated on getting one last gift that I had not had a chance to get - a "Baby's First Christmas" ornament for Scarlett.  We got the last one at the Hallmark store, plus a red jeweled butterfly ornament from Pier 1.  I could have waited and gotten them later, but I wanted them on our tree on Christmas Eve.

On Christmas morning, we did all of our traditions with my family, including my grandmother's recipe for "eggs a la goldenrod" - biscuits and gravy with hard-boiled eggs grated on top.  Simple, but my sister and I always considered this holiday food when we were little, and we only have it on Christmas and Easter now.  We opened stockings and gifts; it was a extra generous Christmas, I think.  We are very excited to fill up our new Kindle (thanks, Uncle Danny!) and read Scarlett her new touchy-feely art books (from Amazon and Great Grandma).  We would have made waffles this morning with my new waffle iron, but we're out of milk.

A huge thank you to our friends Grant, Barbara and Hanna for bringing Santa to Scarlett.  I know she cried and looks horrified in most of the pictures, but it meant so much to me to put on the fancy dress, ruffled tights and shiny shoes that had been waiting.  The great family pictures are priceless to us as well.

Now that the holiday is over, I find myself sinking into dark thoughts.  It's a dangerous vortex that I cannot let myself fall into.  I made the mistake of googling a few terms, but had to stop because my crying was upsetting the baby.  The doctors warned us to resist looking up too much until we know more, because we will just end up slogging through a lot of material that won't pertain to Scarlett.  So, when I get the urge to Google, I blog instead.

We're cleaning the house today and trying to get some rest.  Tomorrow we meet with the oncology team at 11am.

Friday, December 24, 2010

Merry Christmas from Brandi, Chris and Scarlett

Project

Many people have asked how they can donate to Scarlett's care.  Today, before we start the Christmas celebrations, we are looking into ways to accept donations for Scarlett's medical costs and whatever else comes up.  There are a lot of issues to deal with when looking this, like taxes and write-offs, so we are trying to do some good research before we jump on board.  We know we can use Pay Pal, but aren't sure what the ramifications or restrictions of that might be.  Hopefully we will have something set up next week.

Yesterday we learned that there was some kind of mistake with Starbucks' insurance for Scarlett.  They say she's not covered, even though we filed all the forms on time.  They said that she's no longer eligible for enrollment, since the 60 days are up, so we may have to wait for Open Enrollment in August.  At least we still have my insurance, though we aren't sure how long we can make it last.  I am a teacher.  I took the maximum amount of leave for Scarlett's birth to keep my insurance in my district - 12 weeks, which will end on Jan. 31.  A large portion of that is unpaid leave, so we were scraping by just so I could still nurse full time and get her past the first 3 months.  If Scarlett still needs such detailed care in February, which I can only assume is the case, I can't imagine being at work.  The administrators in my district are already working on this for me, and hopefully there will be some kind of solution that affords us benefits even if I can't work.  However, no work means no money, and we still have to eat.  Starbucks is great for flexibility and free coffee, but doesn't support a family of three with skyrocketing medical expenses.

I wish we didn't have to worry about the money.  It was the first thing we thought of after the tumor bomb was dropped.  All the social workers we have talked to are also looking to more, and we will have some help with it, but I just hate that I have to waste time thinking about it.  We don't want to be a complete drain of our families either, even though we know they would never think of it like that.

Just like everything else, we will just wait to see what happens.  We have bigger fish to fry, as they say.

We discovered last night that our cheerleaders on BabyCenter, which I joined the day I found out I was pregnant, have started a ton of prayer chains, links and even a Facebook Page dedicated to Scarlett.  Thanks, everyone!  It is comforting to know that Scarlett is being thought of all over the world.  We always knew she would be famous, just wish it wasn't for this.  :-)

Scarlett is dressed for the day.  She looks so cute!  I will try to get a picture soon, when she is not cranky, but before she spits up on it!

Relaxed

We had a relaxing night at home.  We got discharged around 3pm, and when we got home, my mom was cleaning our house.  THANK YOU MOM!!  Then, Chris' mom brought us groceries.  THANK YOU!!

Then the CPS social worker called.  He needed to come see our house before he could close his investigation.  I just wanted that over with, so we said to come last night.  I am still confused as to why he had to see our house, since he has talked to every doctor, nurse and hospital social worker. At least it was clean! He didn't really look around much, but did write down all her medications and ask us if we were okay.  It's not his fault that the ER doctors reported us, so we just tried to answer his questions patiently and explain what was happening.  He told us that the report will be filed as "unfounded", meaning that a call was made but the investigation was clear.  He says it should never come up in the future if I have to apply for new teaching jobs.

After he left, I took a hot bath and drank some tea.  She is sleeping normally again, only waking once in the night for milk, medicine and diaper.  I was so happy to be in my own bed, with her in her bassinet next to me, with no nurses peeking in and no screaming kids in the next room. 

Scarlett is taking her medicines with minimal fussing, but it is very hard for us.  We have syringes to measure the liquids, and we keep accidentally squirting it across the room.  When her dose is just 1ml (sometimes less), every drop spilled makes a difference.  We're trying to relax about this too...none of the medicines are so critical that a smaller dose will hurt her right now.  We're also looking for any other way to administer - the medicine pacifier might work, but we'll worry about it after Christmas.

CHRISTMAS!!!  I'm so excited!  As difficult a time of year it is to have such devastating news, it is also a great distraction.  We're having dinner with the family, going to church and opening presents in the morning.  I can't wait to dress Scarlett up in her cutesy Christmas outfits!  We are working on making her a special appointment with Santa, since she missed that last week.  I have a feeling he'll make an exception for her...  :-)

Chris just made me a mocha, an omelet and english muffins, which all taste and smell delicious.  It pays to have a barista for a husband!

Merry Christmas!

Thursday, December 23, 2010

Hospital Life

We are waiting to be discharged after Scarlett's next doses of meds, so we are musing on what life has been like in the hospital.  She is now IV free! 

We have learned a lot, since, other than when Scarlett was born, we have neither one ever been hospitalized.

  1. Avoid getting admitted on Friday night.  Hospitals are bunisness, too, as much as we might like to think otherwise.  The regular staff is not available, so we dealt with one whole round of social workers, chaplains, etc. before the "real" team was in place.
  2. Earplugs are important.  There are so many noises 24 hours a day - crying kids, alarms, chatty nurses, code blues, hospital-wide announcements.
  3. Plan for sleep.  We got into a routine with our night nurse to plan when we would give meds, feed, change and check vitals so that we could fit in blocks of sleep. 
  4. Breastfeeding mothers are considered part of the baby's health care (at least at LPCH) so I was provided with meals 3 times a day.  This was a godsend financially (though we will pay for it in the end) and for sanity.  The food was put in front of me, so I ate it.  And it wasn't half bad.
  5. There is help for pretty much every need.  We have already been informed of what kinds of emotional and financial support we might qualify for once we have a specific diagnosis.  Money was a huge concern for us, and still is, but we know now that they won't be bankrupting us just yet.  For instance, we will qualify for California Children's Services once we have paid 20% of our annual income in costs (and it shouldn't take too long to reach that point, as far as we can tell).
  6. Even as a team, doctors don't agree.  We have two great specialists for Scarlett, and they both disagree as to what comes next.  Surgeons are very matter-of-fact; Oncologists are more treatment-oriented.  There are nurse practitioners who filter for them, since they aren't always great at talking to parents.
  7. Ask for crazy things and you might get them.  We were told there was a couple who are doctors here who experienced a similar situation with their daughter a few years ago.  We asked if we could talk to them, if they were willing and able.  Our doctor asked them, and they agreed to meet us yesterday.  I can't say how comforting it was to get a hug from a mommy who knew exactly how I felt.  She is the only person I have met who knows how my heart aches, and how helpless I am right now; they also gave us really practical tips for how to manage our first days at home with Scarlett.
  8. Look around - you might know someone.  We ended up finding people we knew or had connections to all over, and seeing a familiar face was great.  A nurse in NICU is a friend from high school, and dropped by with goodies (Hi Jen!); one of nurses on the floor I recognized from school, and was married at my parent's church; a doctor in pre-op was a parent from the school I teach at.
We feel really lucky to be working with this hospital, but we're happy to go home.  Hopefully we won't be back full time.

We meet with the ocologists on Monday.  Until then, we're going to try to go back to our regular life, as best we can.  Christmas Eve with family, play with our dog, and loving on Scarlett.

Packing

Rumor is we might be going home today - hooray!  It's scary and exciting.  Though, you know you have a special situation when your child's doctor gives you his personal cell phone number to call anytime over Christmas.

The biopsy went well.  The surgeon said they lifted the very thin bone and took out a piece of tumor about the size of a nickel.  Stitches should dissolve over the next few days.  They only shaved a very small part of her hair, like we asked them. 

She came back from surgery to the PICU.  There were 3 IVs - both hands and one foot.  They haven't used them since she left surgery, so they will come out this morning.  We spent the afternooon in PICU, but she was back on the regular floor since 6pm.  The nurses were almost as glad to see us as we were to see them.

We have stopped breastfeeding, and I am now pumping and bottle feeding.  We struggled with latch problems from her first day, and now with IVs and bandages and everything else, it is much less stressful for momma.  It's a little sad, but we might pick it up later.

Now, we are just relaxing in the room as she naps and we wait for rounds to discuss discharge.  Hopefully, my next post will be from home!

Wednesday, December 22, 2010

Medication

As of last Friday morning, Scarlett had been given no medicine.  She was exclusively breastfed (other than a small amount of formula the pushy postpartum nurses forced on us).

Today, we are on a very different schedule.
  • Decadron: Cortozone steroid to reduce swelling around her brain.
      • Dose: Every 6 hours, by mouth.
    • Pros: Gives us more quality time, minimizing the pressure the tumor exerts on her skull.
    • Cons: Horrible taste that makes her gag; causes increased apetite, fussiness, agitation, stomach acidity, vomiting and sleeplessness.  Stomach acidity is causing a fierce diaper rash.
  • Zantac: Antacid
      • Dose: Every 12 hours, by mouth.
    • Pros: Calms her stomach upset caused by Decadron
    • Cons: None, yet.
  • Tylenol: Pain reliever and fever reducer
      • Dose: Every 4 hours, by mouth
    • Pros: Eases discomfort caused by repeated IV sticks and stitches.  Tastes like grape candy.
    • Cons:  None, yet.
  • Anitfungal Medicated Diaper Cream: Diaper rash treatment
      • Dose: Every diaper change, on tush
    • Pros: Reduces inflammation caused by acidic poop.  OUCH.
    • Cons: Sticky and messy, mostly for the applicator (mom or dad).
  • Simethicone: Gas reducer
      • Dose: As needed, by mouth
    • Pros: Minimizes gas pains caused by swallowing air
    • Cons: None, yet.
  • Sweet-Ease: Sugar water
      • Dose: Constantly, via pacifier dip
    • Pros:  THANK YOU LORD FOR SWEET-EASE.  She is addicted to it, but it has gotten us through IVs, injections, diaper changes, fussiness, and no-feed hours.
    • Cons: Sweet tooth before she has teeth.  The little cup spills everywhere and is so sticky we might as well spread syrup along the crib, the floor and the baby.
We are still trying to figure out a functional schedule for all of this.  Add this to vitals and neurological tests every 4 hours, and we have had almost a week of very long days and nights.

Waiting

Not much else to do, so we are sitting in the hospital room with family.  We are talking about all kinds of silly things, like what to eat for Christmas Eve, the evil of credit cards, even a funny newspaper article about weather in Southern California.  We handed Scarlett to the surgery nurse at 7:30 this morning, and are now waiting for our hospital pager to buzz.  She was off of all the monitors and IV, so I got to carry her to the surgery check in instead of having her ride in the giant metal crib.

The hospital staff has been absolutely fantastic.  LPCH is a wonderful place to be when dealing with something like this.  They are knowledgable, understanding and kind.  It is such a different expereince than when I was in the hospital for Scarlett's birth.  The nurses here are wonderful and patient with us and Scarlett.  We have already met with the social worker who works exclusively with neurosurgery patients' families. 

A lot of people have suggested we contact St. Jude Children's Research Hospital.  We asked our doctors about getting a second opinion from the St. Jude doctors; they said they would absolutely do so after the biopsy results.  The neuro-oncologist also explained that they work in concert with St. Jude doctors for research.  There are such small numbers of patients with these types of tumors that the hospitals much work together to get valid sample sizes for research.  We feel confidant that they will do whatever needs to done to help our little girl.

Biopsy results won't be in until next week.  We will see what comes next as soon as the doctor is ready to talk to us after surgery.

Tuesday, December 21, 2010

Biopsy

First, we are astounded at the response to this blog and our daughter's case.  In just two days, we have had over 3,000 readers all over the world.  It means a lot to us that people are keeping us in mind.

The doctors are performing a biopsy tomorrow morning at 7:30am (PST).  To our relief, they have decided not to do any painful pre-operative procedures until Scarlett is under anesthesia.  We want her in as little pain as possible, and watching nurses repeatedly try to insert an IV into my baby has worn me down.  Scarlett is a "hard stick", meaning that her veins are very small and hard to manage.  This is just like her momma, Grandma and Auntie, so no surprise there.  Today, they had three different teams of nurses attempt to get the IV back in (it slipped out this morning), even using ultrasound to try to nail it down.

We had to sign our consent for the biopsy procedure.  This included a conversation with the resident neurosurgeon regarding all possible risks.  There are always risks of bleeding and infection in these types of procedures.  There would be some risk of brain damage, though they do not believe they will ever have to touch her brain; the tumor is large enough that it is easy to access.

We signed our consent for "stereotactic left frontal biopsy for brain mass under image guidance."  Basically, they will use the MRI images to guide the extraction of a small piece of tissue from just under the skull.  It involves just a small incision in the skin, a small hole in the skull and a few stitches to close up.  We were sure to ask what we should expect her to look like when she comes back to us.  They told us they should only need a small bandage to cover the stiches.  I had images of her head mummified by gauze.

Results will take 3-5 days.  We do not expect to hear much from the doctors until midweek after Christmas.  We will be home with our families, trying to enjoy any last "normal" days with Scarlett.  Even then, a home care nurse is being assigned to us.

We are glad she is currently unattached to any monitors or IV, and just taking oral medications.  We are going to give her a bath and hopefully put her to bed for a good night's sleep.

Schedule

Our team of doctors and other personnel continues to grow.  This morning, I tried to count how many people were in our tiny room for this morning's rounds and updates; I got to 10 before I was too distracted to listen to the doctor.  Doctors, residents, fellows, social workers, nurses, not sure who else.  We came to a realization that this is our new extended family; they will continue Scarlett's care no matter how long and what direction this takes, so we better get cozy.

Scarlett will have a biopsy at 7:30 tomorrow morning, December 22, 2010.  This process is minimally invasive (or as minimally invasive as a brain biopsy can be).  There is a portion of the tumor that has been eroding through the skull, so the bone is very thin.  This is where they will enter for the biopsy.  The actual procedure should be only 30 minutes, but preparations, anesthesia, etc. will make it about 2 hours.  She will have just a few small stitches, and should feel very little.

Afterward, she will be monitored closely.  Our doctor hopes to keep her out of PICU, but we will go wherever we need to.  If she is recovering well, they want us home for the weekend.  We're betting on Christmas at home.

Monday, December 20, 2010

2010

2010, a year that will live in infamy for my family.

January: Our house floods due to broken pipes.  Huge dehumidifiers replace our furniture.  Sheetrock, carpeting and flooring have to be removed and replaced, new paint in half the house.  New pipes are run through the ceilings and walls.  We lived in my parent's spare bedroom for more than a month.


February: Surprise!  I'm pregnant.


March: I found I would likely be laid off from my job.  Chris had been unemployed for almost 4 months by this point.

April: Chris was hired at Starbucks.

May: My sister Lindi announced she was pregnant.

June: Layoffs get ugly; I pack up my classroom while 6 months pregnant.  My grandma had knee surgery.

July:  I am monitored for dehydration. 

August:  In a last minute reprieve, I am rehired.  I reset my classroom at 8 months pregnant with only two weeks to plan for the year.

September: Lindi lost her baby at 22 weeks.  It is horrible for us all.

October: Scarlett is born.

November: Most of this month in lost to the haze of new parenting and sleeplessness.

December:  I finish my Master's degree after two years of work.  Scarlett is admitted and diagnosed with a brain tumor.

Statistics

While we don't know exactly what kind of tumor we are fighting yet (we'll know more after the biopsy this week), our neurosurgery and neuro-oncology team tells us:
  • About 1 in 35,000 babies are born with a brain tumor.
  • About 210 of those are in California.
  • About 50 are treated at LPCH by our doctors.  This led them to descrine Scarlett's condition as "common" (for them - roughly once a week).
  • Of all infant (to age 3) brain tumors, 30% are in newborns.  This is due to the high-speed growth of newborn brains, and the avaiability of nurishment for abnormal cells.
  • There is no known environmental factors for these tumors.  Basically, nothing I could have done caused this or could have prevented it.
  • The tumor was likely forming along with her brain in utero.  We may have seen it on a good third trimester ultrasound, but not necessarily (I didn't have an ultrasound after 20 weeks).
  • Despite it growing inside her while she was inside me, there is zero chance I was affected or have any related tumors.
  • One of the possible types of tumor may have a genetic component, but most are assumed to be spontaneous.  It is important for us to distinguish the type of tumor to know about genetic factors for our future.
  • The doctors estimate a 95-97% chance of malignancy.
We have learned a lot of numbers in 3 days.

Monday

We talked to the neurosurgery team this morning after their tumor board meeting.  They are planning to do a biopsy of her tumor on Wednesday morning, and hopefully she will be ready to go home on Christmas Eve.  Results should be available early next week, which will give us more infomation about what kind of tumor we are dealing with and what options we may have.  She is resting and acting her normal, feisty self, which is the most comforting.  More to come.

Sunday, December 19, 2010

Discovery

As I write this late on Sunday, I cannot believe how much has transpired in just a weekend.

Scarlett's 2 month Well Baby appointment was scheduled for December 17, the day after her 2 month birthday.  We had minimal concerns to bring to the doctor, as most new parents do: Is she gaining enough weight?  Is she hitting her developmental milestones?  Is that color poop normal?  Then, there was a bruise. 

Scarlett had developed a small bruise on her forehead in early December.  We had no idea where it came from.  In the beginning, we assumed she had hit her head somehow with her own hand or a pacifier.  Of course, we had never done anything that would have caused an injury, and felt awful that something had snuck by our overly-vigilant eyes to bump her.  We waited for it to pass, as bruises do.

Days kept passing, and the bruise did not fade.  It would lighten when she was calm, but turn dark and raised when she was angry and crying.  We noted it and decided we would ask at the appointment we had already scheduled, just to be careful.

By the appointment, there were three small bruises.  The medical assistant noticed them immediately, and we said yes, we wanted the doctor to take a look at that, since it isn't going away.  Our doctor came in, excited to see her tiny patient (everyone is always excited to see Scarlett!)  She began the exam, and as she noticed the bruises, she started to feel the fontanel, or soft spot, on Scarlett's head.  It was at this moment that our appointment made a u-turn.

The doctor, a family practitioner, told us she wanted to bring in a pediatrician to check Scarlett's fontanel.  A few minutes later, the pediatrician and our doctor were conferring in the hall about our baby's head.  We looked at each other as I nursed Scarlett in the office, ready to hear whatever they were going to tell us, but not expecting anything serious.  Scarlett was perfect, behaving normally as she had all along.

When the doctor returned, her face was obviously concerned.  She had already called to arrange a CT scan; we were to immediately walk over to radiology, where they were waiting for us.  Scarlett fell asleep as they strapped her to the huge x-ray machine, and a short time later we walked back to the doctor's office.

When the doctor returned to see us, she said "Something is wrong with her." On the CT scan, she said, there was some signs of bleeding in her brain. She wanted to refer us to the neurosurgeon at Lucille Packard Children's Hospital at Stanford.  As she left the room, we waited in shock; we did not bring her a sick baby.  We talked about how our next week would be tight, scheduling a neurosugeon visit in Palo Alto along with work and Christmas shopping.

When she returned a few minutes later, she began to talk quickly: "You are going to drive to the Washington Hospital ER, and they will prep her for the ambulance ride to Palo Alto."  Ambulance?  Where did that come from?  "Wait, ambulance?  We are going right now?  We can't drive her?" "Yes, now.  It's better for her to go with the ambulance."  She didn't let us dress her, just a t-shirt and socks. 

We called my parents to meet us at the ER.  It killed me to make yet another frantic phone call to my poor mom.  As we drove the short distance to the ER, we were in shock and disbelief.  Our baby was NOT sick.  She was learning to smile, lifting her head, loved to listen to music.  Not sick.  What's the rush?

At the ER, they were waiting for us.  We were rushed back to a room, where an IV was started.  It was too much for me to watch the well-meaning but ill-prepared nurses jab at my 9 pound baby.  After a few minutes of holding her hand and whispering my love for her as she screamed and writhed in pain, I had to leave to let Chris hold her. 

Then began the questions: How old is she?  Was she full term?  Did you experience any complications in pregnancy?  In delivery? When did you notice the bruising?  I was asked the same questions so many times I can't recall.

We learned later that the radiologist at the ER saw the CT images and, with the impression that there was bleeding in her brain, called Child Protective Services with a report of a possibly abused baby.

The transport team from LPCH arrived around 4:45, about 3 hours after our first appointment had begun.  They strapped Scarlett to a gurney as they rambled off directions to the hospital.  They had brought a large support staff for the small ambulance - 2 EMTs and 2 nurses - so neither Chris nor I could ride with our daughter.  We kissed her goodbye and my mom drove us through a horrific rainstorm in Friday traffic across the Dumbarton Bridge...it took almost an hour to go 20 miles.

When we found our way to the Pediatric Intensive Care Unit (PICU), Scarlett was already laid out on the bed.  A huge team of doctors, nurses and EMTs were fussing over her, with both awe and shock over her tiny size.  Details begin to blur as we learn she will have an MRI in a few hours...a tour through the unit - our room, the desk, our nurses, the family waiting room (with one shared bathroom for all the panic stricken families of PICU kids)...I cannot feed her, but here is the pump to save milk...we will be in the PICU for a while...a quick sit-down with the pediatric neurosugery resident to tell us there was a large mass, the CT scan of which he showed us on his iPhone; "impressive," he kept calling the mass...she will be intubated and paralyzed for the MRI, so kiss her now...and there is a social worker waiting to speak with you.

As the social worker interviewed us, asking how we handled when we were feeling angry, how we handled when Scarlett was fussy, did we have any support, we sat in stunned silence as he tried to determine what kind of horrible people we might be.  As we explained our home situation, our jobs, education, health and whatever else he asked, I could not help but wonder how we got here, telling this stranger that no, we did not shake our baby when she cried;yes, we understand it is unsafe to leave the baby with the dog unsupervised; no, we are not drug users, nor do we smoke or have guns; yes, the doctor told us it was a mass and no, we didn't think we would be home Tuesday for him to check our home for dog feces.

We had to shake that off fast, because it was time to walk with our child to the MRI.  We held hands as we followed the huge metal crib with our baby strapped down on top through the labryinth of Stanford's underground level.

It took nearly three hours before she returned.  They took out the breathing tubes and said we should rest, but not to feed Scarlett in case the MRI showed an immediate need for surgery, as anethesia might make her vomit.  So we embarked on a long night of attempting to rest in a noisy, freezing ICU room, still wearing our windbreakers and tennis shoes, with a screaming, hungry, sore baby.  We did not rest.

The next morning, we waited to meet with the neurosurgeon.  We were assured by every nurse and doctor we saw  that this was the guy to talk to...best in the country, if not the world; we're so lucky to have him.  Lucky?  I don't think so. 

As I walked to the bathroom, I passed our nurse during the shift change; she was showing Scarlett's MRI images to the new nurse.  I stopped to see the white egg-shaped mass in my daughter's brain.

When the doctor arrived, he began talking and showed us the detailed images of our baby's brain.  While he couldn't give us much detail yet, what he could say was that our perfect, beautiful, seemingly-healthy baby was harboring a 10cmx7cm tumor in her brain.  It has smashed her tiny brain to the right, and will continue to grow and smash.

Welcome to Our Blog

Welcome to our blog.  We are Brandi and Chris, and we have begun writing this to document and share our story of love and determination for our daughter, Scarlett Grace. We have called her Butterfly from her first day, so this blog is named for her.

Scarlett was born on October 16, 2010.  On December 17, 2010, we discovered she has a massive brain tumor.

This is a record of our experience as it happens.  No guarantees about regularity or frequency of posts, but we want to share with others how amazing our daughter's life has been so far, and how we are going to fight for the best possible life for her from now on.