Monday, February 25, 2013


I can only imagine how difficult it would have been to have a child with a brain tumor (or any rare condition) before the internet. Blogs and Facebook have become harbors of support for families like ours, and somehow, once you start, it's hard to stop looking for connections to others in similar situations.  It would have taken me years to figure out how to transition Scarlett off of the formula without the tube-feeding pages. I am a member of a Yahoo group for Pediatric Brain Tumors, with over 1,000 parents looking for some kind of connection, or offering their experience and support.     Someone might have something new to try, a new idea or treatment, a doctor we haven't talked with; others come to us looking for just that all the time, and we are all too glad to share. Outside of the hospital or special camps or conferences, it is the only place where we can find anyone who can commiserate with what we are experiencing.  People we have only met via Facebook and blogs know more about our daily life than some we see every day.  It is a community, with ties between parents, children and doctors that outsiders will never understand.

Unfortunately, it is also a group that experiences an inordinate amount of loss and grief.  It feels like each week, a new child that I have followed, rooted for and watched fight relapses...and now we are members of that group, too.  Last week, yet another of these amazing children found out that their treatment is not working, and the tumors have continued to grow despite the doctors' best efforts.  I have never met her, but I have seen pictures of her, read her mother's joys and worries, and waited anxiously for updates.  I will continue to read as her next treatment options are explored, if there are any, and hope that the next phase is as easy on her as possible.  And I will continue to fear that we are next.

There is an amount of distance I have to keep from these other children fighting similar tumors to preserve my own heart.  Maybe it is selfish, but I feel like I can't get too involved without it igniting more pain.  I read and reread updates, and talk about many of them around the house as if we are close friends, but have a very hard time connecting directly.  Very early on, Scarlett's doctor warned me of this; as I described one of the stories I had been reading, she gently said, "Be careful reading those."  I understood her implication: these are not stories that typically end well.  Their struggles are too personal for me; seeing other kids suffer brings back so many painful memories and fears from the not-so-distant past.  Even worse, it makes it hard to overlook the possible future we are constantly facing.

There is no denying that we are still living on the precipice of disaster.  Scarlett's first in-treatment MRI is Friday, and like so many times before, it will determine the next step in our lives.  We hope to see no tumor growth, just the same dark expanse where there was once a tumor, and where there should be healthy brain.  If just one cell remained, and if that one cell is impervious to this new chemo, we could be uprooted yet again, and the next step remains unclear. 

At some point last year, I thought we might just be in the clear, safe from what this tumor has done to us.  But since it reared it ugly head once again, I feel convinced that it will always cast a shadow on us.  Brain cancer is not who Scarlett is, but it affects her every single day.  Not a single day has gone by since she was two months old that I have not through about the tumor and what it has done to her.  I know the other parents share the same fears and worries, and I am grateful that they have chosen to share. 

Thursday, February 14, 2013

V-Day 2013

If you have been with us a while, you may remember that Valentine's Day has become more a legend than a holiday for us.  To recap, on February 14, 2010, Chris and I learned that we were expecting an unexpected (but exciting!) addition later that year.  One year later, on after 4 surgeries and a nasty bout of RSV, we celebrated Scarlett's first Valentine's Day with her very first dose of chemo.  And finally, last year, that sneaky little Cupid made sure we were together - Scarlett had her g-tube surgically placed that day.

So, for weeks, we have been cautiously approaching, awaiting whatever doom may lay ahead.  Would it be another surgery?  How about an unexpected MRI?  Maybe a day full of appointments, topped off with a little puke?  

I am happy to report that V-Day 2013 has officially passed uneventfully.  Scarlett went to school, looking heart-tastic.  
Even her shoes have hearts!
Her bag is full of valentines for her classmates, teachers, aides and school directors.  Over the weekend, I made a little project out of it - Fruity Pebbles Treats (more colorful and flavorful than Rice Krispies!) cut with a heart-shaped cookie cutter.  Treat bags from Target, blank stationary with stickers and some kindergarten teacher writing, and - BAM! - preschool valentines.

I hope the kids like them as much as I did!

After school, she had labs.  Her neuro-onc NP has arranged for us to have her labs drawn on non-chemo weeks at our local medical office, rather than having to drive across the Bay for a 10 minute procedure.  There was one nurse who knew how to draw from a port, so Scarlett has a standing appointment with that one nurse to have her labs drawn every other week.  Another perk f having a team that is fully committed to making Scarlett's life as easy as possible.

While Chris chauffeured,  I was at work.  I went to work today with no voice.  Not just hoarse; when I talk, nothing but whispers come out.  Just take a minute to imagine the challenge of managing a Valentine's Day party and activities with 26 5-year-olds without using my voice...suffice it to say, it was a long day, and I am taking tomorrow off to recover.  The highlight of the day, by far, was the deliver of roses to my classroom from my own Valentine...he's the best!

So now, Scarlett is in bed, Chris and I both have a glass of wine, and we are watching The Daily Show...most anyone would think it was a boring way to spend a Valentine's Day, but for us, it is just right, and the best we've had in years.  Well, there was a little puke, but that's just a normal day around here.

Sunday, February 10, 2013

Round 2

 This is our view lately:
That's Scarlett, heading straight out the doggie door.  She has gotten so fast, we can barely catch her (and have had to go looking for her more than once.)  She doesn't care if it is cold and dark in the garage, or if dogs are waiting on the other side. It has become a game of chase, and most days, she is winning! 

This week's appointments included a visit to the neurosurgeon and audiologist.  Her neurosurgeon is very happy with her healing after her surgery in December, and does not need to see her for 6 months.  We have never gone 6 months between neurosurgery visits, so I will keep my fingers crossed that we can stay away that long.

Audiology brought more good news.  Her hearing has been difficult to test for the last two years, as she was too young to rely on behavioral results - gauging her hearing levels based on her reactions to tones played through big speakers.  We have done several ABRs, which test her brainstem response to different sounds, but they require anesthesia, and are therefore much more dangerous.  A few months ago, we decided to switch audiologists, and it has made all the difference for getting more detailed and accurate information about her hearing.  The new office is able to do much better behavioral tests, and measured her hearing as slightly better than in previous tests - moderate, rather than moderate-severe.  It's a minor difference, and doesn't change what we are doing with her hearing aids or school, but gives us a better idea of what she actually hears.

On Friday, she began Round 2 of chemo (her third dose in the twice-a-month plan).  The appointment was not until 12:40, and then with the typical delays (and the non-typical, like waiting for Scarlett to produce a urine sample), the actual infusion did not start until nearly 3:00pm.  We did everything we could to entertain her for the hours she was trapped in the bed, but her favorite game was "Throw everything on the floor so mommy or the nurse have to rinse it."  Fun!

Her psychedelic t-shirt is from ComfyCozys.  They make shirts for kids undergoing chemo who have port catheters.  There are two zippers on the chest to allow access to her port without having to strip off her clothes, as well as holes in the side seams to allow the wiring and her feeding tube to come through untangled.  It worked great, and we are very thankful to Lorraine from ComfyCozys for getting us the shirt so quickly after we heard about it from one of our readers.

At the end of a very long day, Scarlett showed us just how far she has come in this journey.  The nurse had to take her blood pressure before discharging her.  Scarlett stretched out her arm and held it still for the entire squeeze.  When the machine stopped, she pulled at the velcro to take it off.  It left me with mixed feelings - she is so relaxed and agreeable, which I love and am grateful for.  However, no toddler should be so used to a blood pressure cuff, or should need a special onesie that allows access to all the medical access points.  It's just another reminder of how different her life is than we ever imagined it would be.