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.