Year in Review

2011 is coming to a close.  I think it has been both the longest and shortest year of my life; never-ending days of hospitals, chemo and sick baby, alternating with the non-stop appointments, blogging and changes.  I thought I would do a little review of our year, to help us look back on all the events that have shaped the last 12 months.

Scarlett' Year in Review

January

More than 24 hours of surgery, three weeks in intensive care and a few severe complications, but the tumor is GONE!  In her free time, she learned to coo, and use her left hand again.

February

Port catheter placed, then a bad case of RSV.  We had to get that cleared up so she could start chemo on Valentine's Day.  Then, a shunt at the end of the month.

 March

Chemo was bad this month; so bad, we took her to the ER for dehydration.  Since she could no longer keep any food down, we had to put in an NG tube...which she still has.  In march, the blog hit 1,000,000 page views after only 4 months!!

 April

Two days after a 10 day hospital stay, she woke up with a fever of 102.  It took a few days to figure out her shunt was infected, and her whole system was in chaos.  She had three surgeries to replace the old shunt.  We spent only 2 days at home in this entire month.  We also learned that her hearing had been severely damaged by the chemo and infection.

 May

May was our last long hospital stay, but it was a pretty uneventful month overall.  The last of Scarlett's hair fell out.

 June

We finished the Induction phase of chemo. Early in the month, we started to notice that the left side of her head was changing, and by the end of the month, it had nearly completely caved in due to an overly-efficient shunt.  However, it never really slowed her down.  Scarlett moved into her own room and got her first teeth.

 July

We battled low blood counts in July.  She had her lowest-ever counts on July 5: platelets only 2000.  This caused quite a panic in the hospital, but a transfusion fixed her up.  She was getting red cell and platelet transfusions every week at this point.  She also got her new hearing aids.  She has not been hospitalized since July - yea!

 August

More transfusions, and a clear MRI.  She was feeling pretty good in August, but her counts took a long time to recover, so she got no chemo this month.

 September

We started to see hair come back this month!  Her counts finally began to rebound, and we began giving chemo each night at home.  She visited the beach for the first time, and started sitting on her own.

 October

I am sure other things happened this month, but the biggest event was by far Scarlett's first birthday!  We celebrated with a big party, and then a fantastic blood drive a week later!  I can't wait for this time next year.

 November

In November, Scarlett got to meet her new cousin Caleb.  They are growing to be good buddies now, but they weren't so sure about each other at first...  Our biggest accomplishment this month was finally getting social services straightened out after months and months of fighting.

December

We have had a very calm December.  We are moving right along with chemo, had more clear MRIs, and celebrated the holidays at home with our families.  Scarlett has a ton of hair and teeth, and she is just a happy, easy-going girl.  

 Bring it on, 2012. 

Round 11

Last night, we began round 11 of chemo.  This is the second-to-last cycle, and the last of the nausea-inducing, immuno-suppressive stuff.  I can hardly believe we are this close to the end!

Not much else to report these days.  Scarlett and Chris has both had pretty bad colds all week; I have been fighting it off with every homeopathic tea, drop and pill I can find.  Luckily, it was the quietest week we have had in a long time since all of Scarlett's therapists are on holiday breaks.  Just one appointment this week for labs, clinic and chemo pick-up, though it did take about 5 hours from start to finish!

We got the official results from last week's follow up MRI that there has been no change in her shunt problem, so we are clear to proceed with the last months of treatment.  This puts is one big step closer to the harrowing reconstructive surgery scheduled for next summer.  We should be seeing the neurosurgeon in January to begin the planning process for that.

We don't have much planned for New Year's.  Chris has to work the closing shift Saturday, then open on Sunday, so no hard partying for us!  We hope to see a few friends and some family, maybe have some champagne.  Honestly, I'd rather keep Scarlett on her regular schedule than try to go out!

Just a reminder: If you gave blood with us in October, you are likely clear to give again!  If you are in the Bay Area, the Stanford Blood Center has been fantastic to work with, and they have a few locations on the Peninsula.  If you can't make it there, check with the Red Cross to see where you could donate. Chemo doesn't stop for the holidays, so patients need blood all year round, and donations are slower this time of year. 

This year's butterfly ornament

Ready for Santa!

Merry Christmas from Scarlett, Brandi and Chris!

One Year Later

 Scarlett is now 14 months old.  She weighs 20 pounds, 2 ounces and is about 28 inches tall - about the 10th percentile for height, 20th for weight.  She has 8 teeth, with 4 coming in (for the last two months!!).  Her hair is now more than an inch long and honey blond.  She can sit on her own without falling over (too much).  She can roll over from her back to her stomach, but only when someone important is looking (never just at home!)  She puts EVERYTHING in her mouth - paper, toys, her fingers, other people's fingers, iPhones, and her personal favorite, small pink hearing aids.  She loves to play Peek-a-boo, hang upside down and shake her head no-no-no-no with a big grin on her face.  If you are really lucky, you can catch her waving.  She will only eat from a spoon if she can hold it herself, and completely refuses any bottles or formula now (no milk, Pediasure, water or juice either.)  She loves Christmas music, just like last year, and starts kicking and waving her arms as soon as any music starts.  She sleeps every night from about 8:30 until 7:00 am, thank goodness, because when she is awake, she keeps us BUSY!

Her favorite toy is her NG tube, closely followed by her hearing aids.

It has been exactly one year since Scarlett was diagnosed with congenital glioblastoma multiforme, an aggressive malignant brain tumor.  One year ago, we thought everything was fine.  One year ago, we knew almost nothing about cancer, chemotherapy, hospitals or therapy.  One year ago, we were told our daughter was going to die before her first birthday.

December 17, 2010

We have come so far since that horrible night one year ago.  We have learned to fight for our child, against widely respected doctors, pushy nurses and systems that try to exclude her.  We have stayed positive, somehow; I can't really explain how, but we have never really accepted the darkness and have kept Scarlett's life filled with laughter, even when we are surrounded by sadness.  And, through something that could have torn us apart, Chris and I are closer than ever.  We are determined to make some good from all this, so we can look back with Scarlett when she is older and show her how amazing her life has been and how much good she brought to the world.

We are so grateful for the doctors, nurses and other medical providers who have worked with Scarlett over the last year.  Her continued development and relative wellness is to their credit.  We are also thankful to everyone who has been so supportive - our families, friends, community and all of you who have been reading about Scarlett all this time.  It has been amazing to see how far Scarlett's story has reached - nearly 2.5 million pageviews, readers on 6 continents, more than 5,000 comments, two Facebook groups (one with over 3,000 members), boxes of cards and gifts, hundreds of e-mails and thousands of dollars in donations that have kept us afloat for the last year.  We are so lucky, so grateful and so thankful for everything we have today.  We could not have done it without you.

We are far from the end of this fight.  Scarlett will have another MRI at the end of the month to monitor her shunt drainage, and we still have two months of chemo and a few surgeries planned for 2012. We are bracing for another difficult year, but we know we can make it. 

Decorations

Last weekend, we began decorating for Christmas.  We got a tree on Saturday (we're a fresh tree-only family - no plastic trees!)  Digging out the decorations and going through the ornaments has brought a lot of old feelings back to the surface.  One year ago this month, Scarlett's tumor was discovered (click here to read the story from the beginning).  We had been preparing for her first Christmas, making plans to see Santa, make cookies and visit friends, when we were hit with the most horrifying news of our lives.  After a week in the hospital and a biopsy confirming a malignant (cancerous) tumor, we were sent home on December 23, 2010 with the instruction to wait for a call from hospice after the holiday, and the distinct impression that there was nothing else to be done.  It set a dark cloud over our holiday festivities, to say the least.

Christmas 2010

Luckily, we now know that those doctors didn't get the last say, and we have our beautiful, wonderful little girl to celebrate her second Christmas.  Now, as I hang the embroidered stockings we had made last year, the ornaments we rushed out to buy at the last minute so they would be on the tree for Christmas Day, and I see the haphazardly-packed trimmings, thrown into boxes as we cleared them away before surgery, I can't help but remember how different last year was.  Last week, when we saw Scarlett's NP in clinic, we were discussing the plan for December, and I just broke down at the thought of it all.  It has been such an overwhelming experience (that is nowhere near an end) and the magnitude of it is not always in our immediate thoughts, and every once in a while something will trigger a memory of how close we came to disaster.

To help distract us from the sometimes-upsetting feelings, we are keeping busy.  Last week, we got to go to the Dickens Christmas Faire thanks to our lovely friend Grace.  We have two birthday parties, a graduation party and a Santa visit this weekend, plus we're making time to see Christmas in the Park, as many lighted houses as we can find and maybe even some caroling.  I have cookies to bake for an exchange party, doctor/NP/therapist gifts to prepare, shopping and wrapping on top of the regular 5-a-week appointments.  Oh, and my car needs a SMOG test.  If that doesn't keep us distracted enough, we can always do this:

MRI Continued

This week has been a little crazy thanks to Scarlett's knack for surprising us at every turn...like always, it's her show, and we're just trying to keep up!

Last week, she had her scheduled MRI.  It was clear of any tumor (yea!).  It was not, however, "normal".  I learned this at her clinic appointment last week, where I thought we were just going to do the regular labs and check-up; apparently, our NP thought she gave Chris a heads up when she called, but all he really absorbed was that the MRI was clear - can't blame him on that!  It turns out we had a little more to discuss.

After we covered the basics - feeding, medications, generally well-being - she pulled up the MRI images on the computer.  Once again, I could tell immediately that there was something off about what I was seeing.  What was once a very balanced looking brain scan is now lopsided.  Here's what happening (as best as I understand it, at least):

Scarlett has almost no left brain hemisphere.  The small portion of left hemisphere tissue that did grow around the tumor has begun to shrink; it is assumed that it is not very useful.  Her right hemisphere does everything that needs to be done for both sides, and it is growing.  The growth is normal and healthy (yea!) but it is being complicated by the shunt.  Her shunt is over-draining spinal fluid from the empty cavity in her head, therefore not putting any pressure on the growing right side.  This has led the right side to follow the path of least resistance and grow onto to the left side of her skull.  Her head circumference has not changed in almost a year, since the swelling from surgery went down.  This is because brain growth stimulates skull growth; with her brain growing into the other side, it is not creating the pressure to stimulate skull growth.  Since the caved in left side is still very flexible, the change in brain position is causing the bones to shift, resulting in the lump on her forehead.  In addition, a portion of the healthy right side is beginning to rotate on itself as it grows into unrestricted space. 

In a normal brain, this would be very bad.  Any neurosurgeon would panic at the sight of the scans.  Luckily, they weren't shown to the surgeons until later.  The Scarlett twist is that the little miss is showing absolutely no symptoms of this change.  We are on the lookout for neurological changes - sleepiness, irritability (beyond the three teeth breaking through right now...), eye responsiveness, weakness, etc. - but we're otherwise in a holding pattern.  

Eventually, something will have to be done to the shunt.  We're hoping it can wait until her reconstructive surgery in the summer so everything can happen at one time, but it will depend on what happens over the next few months.  A variety of options have been discussed, including stopping chemo after the current cycle to get her closer to surgery, but we will just have to wait and see.  It is always best to avoid extra surgical interventions when she is in chemo.  However, if it needs to happen, it will. 

Now, how many of you know that much about YOUR kids' brains?  :-)

Clear!

Yesterday's MRI results came back: clear!  NO TUMOR!!  We will check again in three months.

We have an update on her Social Security case.  I posted the letter I sent to our local representatives earlier this month, detailing the trouble I have had getting her Supplemental Security Income (SSI) case approved.  SSI is federal payment to disabled persons, including permanently disabled children.  Scarlett qualifies, and we really needed the supplemental income to help cover expenses while I am not working.  After being denied twice, then being told it would be 6-8 months for our paperwork to be processed, I was done being Mrs. Nice Guy.  I wrote the letter to bring our local representatives attention to the ridiculous hoops that families like ours were bring made to jump through.

And it worked!  In less than a week, I had a call from Congressman Pete Stark's office, saying that they had received my letter and that our case would be handled by Senator Dianne Feinstein's office (since I wrote to both plus Senator Barbara Boxer, only one can take on a single case).  Less than TWO WEEKS later, I received a confirmation that her SSI had been approved!  I got the SSI confirmation before I even received the letter from Sen. Feinstein's office acknowledging their investigation.  As of December 1, Scarlett officially qualifies for SSI and we will get a very helpful check each month (until we have two steady incomes, when we will no longer financially qualify).

I wanted to share the progress on the issue, as well as how we handled it.  I feel very strongly that the "system" is set up to fail people who are not diligent and who push through the bureaucracy that blankets so many of these services.  It should not take months of reapplying (where, each and every time, I had to fill out 20+ pages of medical information, submit documentation and answer a slew of borderline-offensive questions) for a family in medical crisis to get the help they need.  I can only imagine the difficulty we would have encountered had we not spoken English, not been able to read the paperwork, or not had a reliable phone number to receive calls.

If you are ever faced with a situation where the government services are not doing what you need, I encourage you to reach out to your representatives (if you are in the US, of course).  It's their job, first and foremost, and it is something that they will give time to because a happy constituent means a possible vote for them.  This was not the first time I have written to them (they each got a pageful back when I got laid off, and most of them wrote back...though 20,000+ teachers and I still got laid off!).  Contact information is easy to find on the House of Representatives website, and tips on how to write this type of letter can be found here.

It's That Time Again...

Tomorrow is MRI day.  I hate MRI days.

Round 9 of chemo ended this week, and she is in the week-long break before Round 10.  She has finally been moved from every other month to every three month MRIs, so this is by far the longest we have ever gone (there was a point where she was having them a few times a week).  No one expects to find anything, but she will be monitored like this for her whole life, eventually working our way to just one MRI each year.  She gets full brain and spine MRIs which take about 2 hours under anesthesia.

The hardest part of the MRI is waiting for the results.  It can take a few days for her doctors to review the images and get back to us.  Actually, a few days later is better than hearing right away - we have been told that if there is a problem (i.e. tumor) then the doctors get called immediately.  I am always hoping they don't have to come and find me while she is still in the scan.

One thing we will be looking for in this scan is the movement of her skull bones.  Last week, we panicked when we noticed a large lump on her forehead.  I immediately had flashbacks of a year ago when she had the mystery bruise, asking myself "How could she have gotten that without me knowing?"  I started doing neurological checks, flashing lights in her eyes, watching her eyes track, feeling her hands grip, checking her foot reflexes - all normal. She was laughing at me tickling her.  The lump was not painful, bruised or red, so we could tell it was an internal cause rather than from hitting her head.  We called the on-call doctor, who put a call to the Nurse Practitioner for the morning, who then had us come in a day early for our weekly clinic.  Her determination was that the lump was "just" the bones shifting and causing a protrusion of tissue on Scarlett's forehead.  Her bones are slowly growing, which is causing some shifting among the "islands" of bone on the caved-in left side.

While we were glad to hear there was no need to panic, this is an issue that will continue to progress until she can have surgery next summer.  This is why the neurosurgeon was so antsy to do surgery all this time - eventually, the bones will grow, and that will continue to cause more damage that needs to be repaired.  Unfortunately, we just have to wait.  Chemo has made her much too fragile to do surgery, especially the long, highly-invasive surgery that she needs.  We will get a CD-ROM of the MRI this week, take it to the neurosurgeon in Oakland, and begin discussing the plans for surgery.  We are aiming for late June or July so that she can hopefully be home again and recovering in time for me to be able to start working at the beginning of the school year. 


Tomorrow, think tumor-free thoughts for Scarlett! 

Eating

Eating is a basic skill that we are born with.  Latch, suck, swallow, breathe...bite, chew, swallow... most people don't give the slightest thought about these life-sustaining efforts; they just happen.  Unfortunately, it's not so easy for everyone.

Scarlett has struggled to eat since she was born.  She and I never had good breastfeeding compatibility, so we struggled through 9 weeks of lactation consulting before she was hospitalized (it was not tumor-related - she could eat fine from a bottle in the early days.)  Once she was in the hospital last December, she went through many days where she was not allowed to nurse, or it was logistically impossible due to IVs and stitches, so my milk supply dwindled quickly and we started formula.  She had her first NG tube placed on New Year's Eve to help supplement her feedings to help her gain as much weight as possible before her big surgery.  We fought to get her off the tube feedings before she left the hospital at the end of January.  A few weeks into her first chemo treatments, she was not able to hold down any fluids, so we were forced to place the NG tube again...and we're still there.  Eight months later, she still has a tube down her nose into her stomach, tape on her face and her feeding has not improved.

It is not uncommon for chemo patients to need help eating.  Chemotherapy drugs kill your appetite. Babies and children are often so uninterested in food and fluids that they need feeding support.  The short-term solution is an naso-gastric (NG) tube - through the nose, down the throat and into the stomach.  Tubes help with giving medications that taste bad, bypassing the gag reflex and giving nutrition when the patient loses the ability to eat enough on their own.  For Scarlett, this meant we could feed her very slowly overnight while she was asleep to avoid her throwing up.  It has worked; she has moved from the 10th percentile in weight (from birth to 10 months) to now, finally, the 25th percentile.  However, NG tubes are not typically used for long-term nutrition.

Last week, Scarlett's doctor began discussing a Gastric (G) Tube.  We weren't really surprised, but it is still a big pill to swallow (no pun intended!).  A G-tube is a surgically-placed feeding tube that goes directly through the abdomen into the stomach.  It can be used long term, but can also be removed easily when it is no longer needed.  I am not sure why we had never discussed a G-tube before; I am pretty sure they thought we could avoid it, that Scarlett would eventually eat on her own, and that they were protecting us from further surgery and scars.  Scarlett has been through a lot in the last year, even compared to other babies with brain tumors, and the doctors are very careful to try to avoid any additional procedures when possible.

Everyone tells me the G-tube is much easier that the NG.  It is hidden under the clothes most of the time, so it is not noticeable to the public (the NG is a huge attention grabber - we still get followed around stores by people wanting to ask questions, or overhear people talking about her in restaurants).  It also can't be pulled out by curious little fingers as easily as the NG.  It is placed under anesthesia very quickly and should not need an overnight stay in the hospital.  An external tube is used for three months to create a healed channel (like piercings), and then a "button" is placed, which is easily accessed for feedings.  It is eventually removable with just a small scar.  Other parents have been telling for months that G-tubes are life-savers, but since the doctors hadn't brought it up, we didn't either.  We were all pretty convinced the girl would just eat...but we were all wrong.

Since the G-tube discussion was broached a few weeks ago, Scarlett's eating has changed a lot.  She hasn't eaten from a bottle in over a week.  All fluids and formula are being given via tube.  She has, however, begun eating more purees and hand-held foods, but not nearly enough to think about going tube-free.  We have had occupational therapy consistently for a few months now, but with the nausea from chemo, we all agreed there wasn't much we could do.  Since it has been so long since Scarlett has eaten normally, she has lost some of those natural reflexes that allow us to eat.  She has no "nutritive suck", so she gets nothing from a bottle.  She has yet to learn how to close her mouth on a spoon, so she basically licks the spoon and gets a little each time.  Now, with the sudden drop off in eating, we have been referred to a feeding specialist.  She is also an occupational therapist, but she has many years of experience in just feeding issues.

We met her this Wednesday.  She watched Scarlett eat (or refuse to) and had some manageable, reasonable suggestions that Chris and I are working into our daily routine.  The main points:

• Back off the bottles.  She is getting too old for bottles, so encouraging her to take one is regression.  We are focusing now on introducing free-flowing sippy cups...still no success, but I like the idea of moving forward rather than back.
• De-stress.  We look for cues that Scarlett is over-stressed with feeding - pulling away, turning her head, fussing, spitting, swiping her hand at the spoon - and changing up the experience with a song, a toy or a different food.
• Expand her horizons.  Along with sippy cups, she is now getting a little bit of everything we have.  If I'm eating a salad, I give her some.  For Thanksgiving dinner, she got a green bean, some mashed potatoes, and a dinner roll along with her baby food.  Basically, we're trying to get her excited about food, rather than make it something she fears.  
• Get her back on a regular feeding schedule.  We resorted to continuous night feedings when she was sick, but now she's lost her regular hungry-full pattern.  We are trying to expand her stomach size with incrementally larger feedings through the tube to re-establish the hungry-full pattern during the day.

We're optimistic that this approach will get her back on track...eventually.  I am not under any false notions that there is a quick fix for this.  It is going to be a slow and arduous process, with either the NG or G tube, and there is no point in delaying the inevitable. Plus, any progress we may make in the coming months will be at risk when she has reconstructive surgery over the summer.  So, the g-tube will be going in sometime over the next few weeks.  We're hoping she can be comfortable and healing by Christmas.

We're disappointed, but not as upset as I thought I would be.  I'm so exhausted by the whole process that this just seems like another bump in the road.  Like always, I hope we are making the right decision.  As her doctor said, we can still hope for the last minute Hail Mary, but we'll make plans just in case.

Gobble Gobble!

Happy Thanksgiving!  

Love, Scarlett, Brandi and Chris

Future Thoughts

With Scarlett's birthday and the birth of my nephew in the last few weeks, I have had lingering thoughts of future babies.  We have never had a set number of kids we wanted; we always said we'd see how it went the first time and go from there.  Now, though I am fiercely in love with my little girl, the idea of future children is even more uncertain.  While I'd love for her to have a sibling in the future, I am in no hurry to have another baby.

When I think about being pregnant again, I am terrified.  My pregnancy was easy, I had a somewhat uneventful delivery and Scarlett was born seemingly healthy (we didn't know anything was wrong for two months).  We have even been joking that it seems like I have fully forgotten the aches of pregnancy, the pain of labor and delivery, and the discomfort of nursing.  However, my pregnancy experience will always be tainted by the gloom of cancer.  

Scarlett's tumor was congenital, which means she was born with it.  It grew alongside her brain all along, from some point very early in her development.  We know this because the tumor was not just pushing on her brain; it actually replaced nearly half of her brain.  The right side of her brain has learned to take on the job of both sides (and is doing a pretty good job of it so far!).  The left side just never grew, and it never will.

There was a single moment, early in my pregnancy, when that one brain cell went wrong.  In an instant, her future and mine was forever changed.  What was I doing in that moment?  Was I doing something I shouldn't have, eating something I shouldn't have?  Did I drink enough water that day, take my prenatal vitamin, get enough rest?  Did I even know I was pregnant yet?  These questions will never be answered, and yet I think about them often.  We have been told repeatedly, ad nauseam, that there was nothing I did or did not do to cause this.  It was a single cell mutation that happens at random.  Not all cancers are random, but this one seems to be.  Regardless, I am still haunted by the idea that this happened to her while she was inside me.  My one and only job during that time was to keep her healthy, and I didn't. 

The chances of another baby being born with this tumor are basically zero.  There is no hereditary or genetic component (though there are with some other types of brain tumors).  And I fully recognize that anything can happen to any pregnancy, so I'll never get a guarantee of a "healthy" baby.  How will I ever feel safe to take the risk again?  

Maybe all moms who deliver "sick" kids feel this way, guilt over something they could never control.  Maybe even some dads feel this way when their child has a congenital health problem.  I am sure we all would do anything to take away what happened, to go back in time and change whatever it was that led that one cell to mutate.  But we can never go back, and the fear of what could happen lingers.

I know of a few other families who have been brave enough to have another baby after having one with cancer.  They have beautiful babies, and their survivor kids are doing great.  I can only imagine a life where I won't be haunted by the thought of what could go wrong; I know too much, have seen too much to ever be blind to it again.   It will be a few years before we even consider it, if we ever do, but I can't help but wonder when I'll feel safe again, like my own body won't betray me and my child. 

(Note: When I read this to Chris, he said it was pretty intense.  Sorry about that.)

Cousins

Scarlett and Caleb are not sure what to make of each other.

Decisions

We've been so busy lately.  Scarlett is adjusting well to her 5 appointment-per-week schedule.  It's usually:

• Occupational Therapy with Lynda on Monday
• Physical Therapy with Cathy on Tuesday
• Signing and communication with Kimberly on Wednesday
• Clinic and labs at the hospital on Thursday
• Signing toddler class on Friday

The hardest one to deal with has been the Friday toddler class.  It is about 30 miles away.  It wouldn't be so bad, except it starts at 9am, so we hit the world's worst traffic in Oakland, and need at least an hour to get there.   The class is then 2 hours long, and Scarlett generally falls asleep about 45 minutes in, since she's been up for a few hours and needs a nap. 

We like the school, the teacher, and the classroom.  Since the class is really for parents just as much as it is for kids (maybe more), we get a lot out of it and enjoy it.  It's just very far.

So, we have been exploring our options.  While Scarlett will not be attending school full time yet, language acquisition for children with hearing loss demands early intervention.  Ever since we first learned of her hearing loss in April, we have been fighting to get her back on track with hearing aids and professional interventions.  The school we currently visit was recommended by our audiologist and our local regional center for early intervention, who pays for the home teacher and the class.  However, it is not the only option we have in our area.  One of the wonderful advantages of living in the Bay Area (to balance the outrageous home prices, gas prices, traffic and crowds!)  is that we have access to a wide range of services for Scarlett.  However, that puts us in a position of having to choose, which has been a huge source of stress for us lately.

There are three schools in our vicinity that cover the wide spectrum of deaf and hard of hearing services.  All three are highly regarded and have wonderful track records for teaching children to communicate with hearing loss.  All three recognize the importance of early intervention and have classes for babies starting as early as 12 months.  Once Scarlett reaches 15-18 months (soon!) she will be eligible for much more, and we want to be prepared.

On one end is the California School for the Deaf, which is a public school that focuses on manual communication (using American Sign Language).  They teach ASL as well as written English, but spoken English is not used.  While English and ASL are related, they are in no way the same, and are not typically used simultaneously.  Essentially, all sign, no talking.  This school is literally down the street from us, less than 2 miles from our front door.  Because this school is so close, we are embedded in a community that is somewhat familiar with signing, ASL and regularly encounters deaf people.  I used to go to summer camp here as a child when we had a deaf neighbor.

The opposite end of the deaf communication spectrum is the Jean Weingarten Peninsula Oral School, which focuses on listening and speaking exclusively, with no manual communication - all talk, no sign.  It is about 20 miles away, which would take about 45 minutes (plus $5 bridge toll).  I don't know too much more about it yet.

In the middle of the spectrum are a variety of lesser-known philosophies, including the one we are currently learning.  The Center for Early Intervention on Deafness (CEID) uses a different sign language called Signed Exact English (SEE).  This means that, while they use many similar ASL signs, many are different, and there is a sign for every word and conjugation that is spoken in English, so that you can sign and talk simultaneously.  Our home teacher tells us that people who are fluent in ASL and those fluent in SEE struggle to communicate clearly because the two "dialects" are so different.

SEE is seemingly idea for Scarlett because she can hear, and will benefit from the reinforcement of both spoken and visual communication.  However, this is a small group and they only provide instruction through preschool.  Once Scarlett gets to kindergarten, she will either be at one of these special schools or in a regular school (possibly with the support of special education if necessary).  Either way, there won't be any support for SEE once she leaves CEID at 5 years old, so we will all have to relearn everything.  This seems pointless.

Of course, like everything else, there many shades of gray.  We can choose a school and do a separate technique at home.  We can change our minds and take her to different schools once we see more of how her hearing and neurological development affect her communication as she gets older.  But, no matter what we choose, we have to fully commit to it and make the best of it to truly know if it is working.  This makes it a big decision for us, and one that we are taking very seriously.  We have talked with Scarlett's audiologist about what we can expect as Scarlett gets older, as well as her oncologist about their experience with kids in this situation; both have basically said they don't know.  They expect Scarlett to be on the listening and speaking end of the spectrum.  They expect her to be able to be in a mainstream classroom, or at least a regular school.  But because Scarlett's brain is "hardwired" differently, there is no way to know what she will need.  We just have to wait.

And while we wait, we have to make a decision.  We are setting up an appointment to discuss our early intervention and toddler options with the local school.  We will then talk with the oral school to see what they say.  Our feeling right now is that we want her to have all available options for communication, which means that either a sign-only or oral-only approach will need to be supplemented at home.  This might mean we just bite the bullet and deal with the long commute to the current school.  We don't want to close off any options that might be right for her.

Chris' Birthday

Today is Chris' birthday.  We don't have any big plans, just a movie and dinner with friends.  It's been such a difficult year for him, I just want him to be able to relax and have some fun.  I am so grateful for him and his calm, thoughtful influence throughout everything, especially over the last year as we have had to make the most difficult decisions of our lives.  He works hard every day, whether it's at work or at home.  He is a wonderful husband and father, and I am so happy to have him around!!

Caleb

On Thursday morning, I finally got the call - my sister was in labor!  Mom and I headed to the hospital.  When we got there, she had just gotten an epidural, and told us she had been in labor since about midnight, but they arrived at the hospital around 7.

After her first pregnancy, Lindi wanted to deliver at a hospital with a high level NICU and neonatal specialists. .  The closest to home is none other than Lucile Packard Children's Hospital, the same place Scarlett has had all her oncology treatments, so we all know it well.  In fact, Thursday is also Scarlett's clinic day, so a few hours after I arrived at the hospital to see Lindi, Chris brought Scarlett in for her labs and clinic.  I made a few trips from Labor and Delivery on the 2nd floor to Oncology on the first.

We waited all day, but Lindi made very little progress.  The baby's heart rate kept fluctuating and making the doctors and nurses very nervous.  She wore an oxygen mask to help him, but it didn't make enough difference.  They started talking about a c-section in the afternoon, and had her sign a consent "just in case" around 7.  At about 8:30, when she had made no progress in over an hour and the baby was not at all dropping down, they made the decision that it was time for a cesarean.  Of course, this was not what she had hoped for, so Lindi was pretty upset.  However, once the wheels were in motion and she was being prepped, everyone was calm and eager to get Caleb born.

We all moved to the waiting room - me, my parents, Mike's parents and brother and some friends - and waited.  And waited.  Finally, around 9:45, we were introduced to Caleb Michael.  He was 8 lbs. 4 oz., 21 inches.  He has dark hair and eyes, and is very, very calm (so far!).  He was born at 9:33 pm, after about 20 hours of labor - whew!

 It turns out that his umbilical cord was wrapped around his neck twice, so he just couldn't make his way out.  They were monitoring him closely, but he was very healthy.  We watched him get his first exam through the nursery window while Lindi was still in surgery. It was after visiting hours, so we were lucky that we didn't get kicked out of the hallway!  Unfortunately, that meant we couldn't really visit much until the next day, when we all descended upon the hospital to meet the little guy.

Now, everyone is feeling pretty good and they are planning to come home tomorrow.  Scarlett hasn't gotten to meet her cousin yet, but I'm sure she'll be happy to poke at him as soon as she gets a chance!

Another New Tube

Today was not my favorite day.  It started out grumpy (on more than one account) and ended with tears (on more than one account).  

Scarlett pulled her NG tube out again.  It hasn't happened in a while, and really, she doesn't pull it.  It just gets caught on something and, this time with tape wet from the bath, slipped right out.  It's not painful, really.  It is, however, frustrating because a tube out means we have to put a tube in.

We were out of tubes.  We had to call the hospital, who then called the home pharmacy, who told me that we had them on order all along, and I should have just had them delivered.  This was news to me after having the home pharmacy for almost 8 months; I have been going to the hospital clinic for new tubes all this time, when we could have had supplies delivered to us at home!  We knew they had the formula bags for her nightly tube feeding.  If we are organized (and that's a big "if"...) we can just call when we have a few NG pump bags left, and they will ship a new case directly to the house.  Easy, if only we would remember to call before it was too late.  This week, because we forgot to call, I went to the home pharmacy office and picked them up so that we wouldn't have to wait the 2-3 days for delivery.  Since I had to go there again today and to the clinic tomorrow, that makes 3 trips across the bay for us this week.  Luckily, they gave us a few extra tubes so we won't have to do this again any time soon.

So tonight, we had to put the tube in.  Scarlett has not been eating well AT ALL (like, 3 ounces total all day today, and no solids except gnawing on a soggy graham cracker), so we HAD to put the tube in.  Plus, since she is getting oral chemo, I am really worried about it sitting in her mouth...rotting her tiny new teeth or causing sores...so I am much more comfortable putting it through the tube.  When the time came for cleaning up, getting on PJs and putting in the tube, our usually-mellow baby went through the roof.  No apparent reason, just screaming.

Unfortunately, we had to get it over with.  Chris tried to calm her down while I prepped all the supplies: tube, filled with water, marked at the correct length; thick tape to protect her skin; thin tape (one cut into a heart) to hold the tube in place; syringe of air and stethoscope to check placement at the end (push in air, listen for gurgle in stomach, then pull back some stomach juices to double check...blech).  Chris pushes the tube in through her nose (instructions from the nurse: "when she gags, keep pushing").  I hold her down.  We've done it many times, but it is never easy.  She screams, gags and thrashes her body to try to get away.

After the tube was in place, I scooped her up and just tried to calm her back down.  It is heartbreaking every single time.  She does not understand why we would do something so awful to her.  Her eyes search for us, looking for someone to help her, but we're the ones holding her down.  Please, please, please don't let her remember this.

I rocked and rocked with her, and all I could think about was how uncertain things still are.  It has been so unfair to her, all these procedures, medications, discomforts.  Is everything we put her though - up to this point and in the months to come - going to work?  Will we win this battle?  Some days I don't doubt it, but other days...well, other days are not my favorite.

Assessments

We have finally finished all the assessments for Scarlett's therapy services.  She has been evaluated at every hospital by each doctor, plus by each of the different services, both public and private, that we have had involved in her care.  They do regular assessments to see how she has changed and to make new goals for her continued treatment.  Now that she is regularly seeing a physical therapist and an occupational therapist, they did their own in-depth evaluations and have set new goals for Scarlett (and, really, for us).

Physically, Scarlett is getting stronger and stronger every day.  She is still on the verge of rolling from her stomach to her back, can hold a crawling position with some slight support and can hold her weight on her legs.  She will reach for toys she wants and is beginning to use both hands and lift above her head.  She is so eager to be independent, we can hardly keep her contained any more - normal for other babies, but new for us!

Her fine motor skills have greatly improved, too.  She can get anything she can reach into her mouth.  She chews on graham crackers - yea!!!  She is beginning to pass things from one had to the other - a long-awaited improvement - and is using her left hand much more than she used to.  Feeding...well, that's a whole post in itself (Chris is working on it!)

What was really interesting when we saw all the evaluations together was that her skills are all circling around the same age range - 5-7 months, usually.  Yes, feeding is much lower, and some are higher, but her development is hovering around the same point.  If we subtract all the time she spent so sick and in the hospital - basically, January through July - from her 12 month age, we get...5 months!  It is a good sign that no single skill (besides feeding) is much more delayed than any other.  Her doctors and therapists are all hoping that as she continues to grow, her skills will continue to develop equally so that, eventually, she may not be so far delayed at all (the difference between a 3 year old and a 3 years-and-6-months old is not as vastly different as infant months).  This is optimistic, so say the least, but we have no reason to think otherwise right now.

One of the challenges we have encountered is accurate cognitive testing for a baby with physical, hearing and vision delays.  The routine tests for cognitive ability require her to do things that her muscles aren't ready to do, but that doesn't mean doesn't understand.  For instance, the test required her to have something in her right hand, and grab the second thing with her left, but her left hand is much weaker.  So, since she didn't grab with he left hand, she didn't get credit, so she "scored" cognitively younger.  

I don't care if she is cognitively delayed; we are prepared to help her with whatever challenges she may have.  My problem comes with assuming she is cognitively delayed when the test is not accurate.  It's probably a teacher thing - I hate giving tests to my students that don't test their actual skills (especially in kindergarten, where most tests I am forced to administer really test their listening and sitting-still skills).  I don't want her labeled as "cognitively impaired" unless she actually is.  

I don't think we will be able to get a clear answer on her cognitive capacities until she is older and can communicate what she sees, hears and understands.  Because her brain is "hard-wired" differently than any other brain, there is no real way to know what her brain is getting from the outside world.  Even if her eyes work correctly, she may not "see" correctly, and likewise, even if we improve her hearing with aids, her brain may not process auditory input the same way we might expect.

It's a waiting game that I am impatiently playing.  Every day, I am looking for a sign that we are moving into a new stage or that she is learning something new.  It is crazy-making, especially when combined with my constant vigilance for neurological issues that could signal tumor growth, but I can't stop myself from wanting more for her.  It is like I have had a 5-7 month old baby for months, and I am so eager to see what comes next.  But, like everything else, it will happen on Scarlett-time, not mommy-time.

Social Security

I am sending this letter to our congressional representative and senators today.

Dear Representative Stark, Senator Boxer and Senator Feinstein,

In December, 2010, our daughter Scarlett Grace was diagnosed with an aggressive malignant congenital brain tumor.  The tumor was the size of my fist and had grown in place of her left hemisphere; half her brain was cancer.  We were given very little hope of her survival, and were sent home for her first Christmas waiting for hospice.  The next week, a second surgical opinion gave us hope and we began the long journey through more than 24 hours of surgery, battling seizures, hydrocephalus, infections, further surgery, frequent MRIs and weekly blood draws.  Scarlett is currently in her 9^th month of chemotherapy, with at least 4 months ahead.  She will need reconstructive surgery.  She has a feeding tube to give nutrition despite daily nausea.  She attends at least five appointments each week, including physical and occupational therapy.  She wears hearing aids to cope with chemotherapy-caused hearing loss.  Last month, Scarlett turned one year old.  She has yet to roll over, crawl, or say any words, but she is growing and thriving every day.  She has piercing blue eyes, eight teeth, and a beautiful smile that lights up any room.

Since her birth, my husband and I have struggled to create a financially stable situation for our family.  We both graduated from UC Davis with Bachelor’s degrees and hefty student loans.  He has struggled to find work for nearly two years and currently works at a coffee shop, where we maintain some health insurance benefits.  I have a teaching credential and Master’s Degree in Education, and have been determined to teach despite being laid off twice in 3 years.  After months of disability after her birth, I relinquished my job to continue to take Scarlett to appointments and therapy.  As employment shifted, so did insurance, and we were forced to apply for Medi-Cal to cover her ever-growing costs.  This has been a relief for medical expenses, but does not cover the costs associated with feeding her, driving to and from all appointments (well over 100 miles per week), clothing, and diapers.  While we understand and accept that these are our responsibility, we are simply unable to afford it all on my husband’s small salary.  While we both continue to look for work that will allow us to also care for our daughter, we have been forced to seek additional financial support.

 We are now receiving WIC and have applied for Food Stamps, but have been repeatedly denied for having too high an income.  We have deferred all student loans, for which we receive no consideration when applying for social services.  We have also applied for Supplemental Security Income (SSI) for Scarlett.

When I originally applied for SSI in June, our total accumulated assets were just over the cut-off of $5000.  In July, she was denied again, this time with less than $100 over the cut-off (which includes our car and savings).  It took more than 4 months to hear that she was denied, when I made repeated phone calls to both the national and local Social Security office lines, and was finally told we had been denied months ago.  When I broke down in tears on the phone in frustration, the worker told me that had to make sure our assets were below the limit on the first of the month.  She said any other day didn’t matter, just make sure we have less in the bank on the first.

So finally, on November 1, I applied yet again for SSI for Scarlett.  Our balance is well below the required level.  However, I am now being told that there is a 6-8 month wait for SSI to be processed, at which time we may still be denied.

We are honest, hard-working, tax-paying citizens.  We have college educations and have worked steadily since we were teenagers.  Having our child diagnosed with brain cancer was traumatizing, but we are finding that the aftermath of her diagnosis and ongoing treatment is even more difficult.  On top of the daily worry that her cancer will return, we are worried about how we will pay our most basic bills.  We will soon be forced to move out of our home and begin living with family.  We have repeatedly tried to get access to the basic public services for which we, our families and friends have paid into for our entire adult working lives, and yet we are consistently hassled, insulted, and argued with by workers at these services.   I am enraged at the roadblocks that have been thrust upon us, and even more so at the thought of how difficult this would be if we were NOT educated, English-speaking and supported by family.

Childhood cancer affects more than 12,000 US children each year.  12,000 families suffer through the heart-breaking lifestyle changes that inevitably accompany this diagnosis.    The treatments required have life-long effects that do not end with chemo.  No family should be forced to wait more than 6 months for help.  No family should have to repeatedly be asked the invasive and insensitive questions that I have been asked.  Having a child with cancer is not easy, nor is it something I have any control over.  I can, however, control how I show my daughter that I fought for her best interests, and how I maintained my integrity while doing so.

I implore you to help us and families like us to efficiently secure the services to which we are entitled, and on which we depend for basic survival.   I have included your claim assistance form in case there is anything you might be able to do to help us with Scarlett’s case.

Thank you for the work you do and for your time,

Brandi Wecks