Sunday, June 15, 2014

Seizures

We are home after a 5 day hospital stay.  Yuck.
Let me out!!


Baby jail

Scarlett has been having visible seizures for a few months.  For the last few years, she has had none (that we knew about); it was one of the few "expected" brain tumor effects that we weren't dealing with.  We noticed them right around her last MRI in March.  Her doctors tell us they can just start sometimes, with no new cause.  We had an EEG in April when we thought they were increasing; with confirmed seizure activity then, we began medication for them.  A few weeks later, when the medication did not seem to have any effect, we increased it.  And then increased it again.  Then saw another neurologist, who added a second anti-convulsant.  None of the medications worked, and the seizures have continued to increase in frequency.

Her seizures are not what most people think of: she does not fall to the ground convulsing.  The typical pattern is that her eyes tick to the left repeatedly, her left hand opens and closes and her upper body twitches for 5-10 seconds.  As soon as it is over, she is back to whatever she was doing, unphased by the interruption.  Sometimes, she continues to move - putting food in her mouth, playing with a toy - through the seizure.  If she is walking, she seems to sense it coming and can fall to her hands and knees safely, seize, then get up and keep going.  It is strange, but not particularly invasive to her.

On Tuesday, she had another MRI.  It was perfectly clear, so we are sure that this is not tumor-induced, which is fantastic.  However, that leaves a long and arduous list of possibilities.  We knew the seizures were continuing to increase in frequency, and we estimated 10 a day - that seemed like a lot to us.  As we sat in the clinic room with the nurse practitioner, Scarlett had 5 in less than an hour.  That prompted a discussion about how frequent they are really happening.  It was a startling realization that with that kind of pattern, she was likely having upwards of 50 a day.  This prompted her team to speed up their planned evaluations, specifically a 3-day long EEG that would give them a chance to look for patterns and a source of the seizures.  That day, Chris drove Scarlett to the hospital in the morning for the MRI, then home; back in the afternoon for clinic with me, then home again; when we got home, we got calls from the hospital that they had a bed, and they were ready for her that night.  She was admitted by 7:00pm.

EEGs measure electrical activity in the brain.  The patient is fitted with electrodes to pick up changes in the brain activity.  As the brain functions, it creates waves on the monitor connected to the EEG machine.  Seizures, which are like electrical surges in the brain, show as sharp spikes and abnormal waves.  Since Scarlett has had some strange behavior along with the seizures, they did a video EEG, so we had a video camera trained on her (and therefore us) at all times so that the doctors could compare her brain activity with her behavior in the moment.  To help the doctors track the seizures, we were to push a button when we saw one; that would mark the time and we would type in notes about what she was doing or what we saw.  The doctors were very impressed that Chris was catching almost all of the visible seizures within seconds.


In the first day, they got a reading on the actual frequency of seizures - more like 15 an hour, hundreds in a day.  And that's with medication already firmly established.  We only see some of them - they are often absent, where she might just blank out for a few seconds, others still follow the same twitching pattern we have seen for a few months.  Over the last few days, we have tried several things to get a handle on them - varying medications at varying doses and steroids - and are just now starting to see a change that we hope will stick.  She went down to 5-10 seizures a day early in the weekend, then only 1 in 12 hours overnight.  With that, they let her go, and will check in again soon to see where we are.


It's been wild, since this was the last week of school for me and I had to be packed up by Friday afternoon for construction to begin right away (and, in fact, they started on Friday, moving all my organized piles to the middle of the room to "help" me!)  Chris spent 3 nights back-to-back in the hospital while I visited in the evenings.  Finally, last night, I was free, so I stayed while he got to sleep at home.  We're readjusting to hospital life - we haven't been inpatient at Stanford for a really long time, and things are different (mostly for the better)!

Don't touch my baby!

The biggest change for us in hospital life is Scarlett.  She is mobile and gets bored quickly.  When she was an infant, she stayed in the crib or our arms without much complaint.  Now, we are managing a jumping, climbing, walking escape artist!  The medications kept her more sedated than usual, but she is still pretty lively.  With the EEG on her head, and the video monitor on her, it's quite cumbersome to move around, and she easily got tangled or stumbled.  Her favorite way to fill the boredom was to either eat - primarily graham crackers with crumbs everywhere - or to scoot her toy train around the room.
Jumping on the chair while wired up.
 



Just plain bored.
Despite the many toys we brought, she found the soiled linens bin to be most engaging.

The next steps are vague - there are many approaches to seizure management, and we are getting an overwhelming amount of information about them all as we learn more.  The doctors are working to find a medication solution that balances the sedation effects with effectiveness - stopping as many seizures as possible with the least impact on her daily life.  This is proving difficult, but is critical before the next phase is discussed: surgery.  She is slated for cranial reconstruction in July, so we need to make some big decisions on how to move forward.  According to our doctors, they would usually take several months to try to manage seizures before even discussing surgery.  However, with a brain surgery already on the books, we need to seriously look at the options before we move ahead or close any doors.

Daddy helping entertain her while the technician cleans glue and tape from her hair.

Cruising the hospital halls in the new push car - the highlight of her stay, besides ice cream on-demand.

It's great to be on the other side of that stay, and hopefully we stay out for a while, seizure-free.

Wednesday, April 23, 2014

March and April Recap

Here's what Scarlett has been up to lately...

She had an EEG to measure seizure activity.  Her seizures were confirmed, and she started a new medication to help manage them.  The seizures are still present, so the medication will need some tweaking, but none of it is interfering with her days.
Wired up for EEG.  She was sleep-deprived for several hours the night before to help increase the likelihood of catching a seizure during the test - torture for her and us!
Ice cream parlor for mommy's birthday
She has a new fascination with purses - carrying her own and emptying mommy's!
New occupational therapy goal: dressing herself.  We have a ways to go...
Carousel ride at Happy Hollow


We went to Jack's Camp with other brain tumor families.  It was a great weekend!





Scarlett did several Easter Egg hunts in the last week.  By the time Easter actually arrived, she was starting to get it, and enjoyed opening her eggs (filled with stickers!)  She got dressed up and played with her cousin Caleb.




Helping daddy blend her meals for the week.
Playing horsey!
She got her new and improved hearing aids a few weeks ago.  They needed a few tweaks from the audiologist, but now they're running full time and she wears them with no complaints.  They are really high-tech - with a digital microphone that we can use to enhance our voices for her, a connection for her iPad to directly go into her hearing aids, and self-adjusting features that maximize her access to the sounds around her.  Plus, they're pink.  Always a plus.

The biggest new development is that Scarlett is walking independently!!  She has been taking a few steps between people for a while, but last week, she set her mind to it and just started walking around the house. 

She started with a few steps (surely in part because of her fancy cape from Cape4Heroes!)

Then, last week, we snuck around the corner of the living room to see this:


Now, she's on the move everywhere she goes!  At school, she follows the other kids around and does a good job dodging them as they play around her.  She can stand on her own, pick things up and carry them.  She tries to sign while she walks, but still needs her arms for balance. I am not sure what finally changed after a year of using the walker, but she decided she was ready.  Yesterday at physical therapy, we officially returned the walker, and even got the OK to have her wear regular shoes (without braces or inserts) for a while!

Last week, my article was published in the Narrative Inquiry in Bioethics journal.  It's one among a collection of stories from parents who have children with pediatric brain tumors.  I am very proud to have contributed to this, and hope that doctors and other professionals will read it and gain some insight into parent experiences that will benefit families who go through the same things in the future.  If you are interested in reading the journal, you can access it here or with Project Muse access (with a university or library affiliation).  Just for fun, I searched for myself in Google Scholar...
There I am!  Somehow second when I search my name, but there.

Tomorrow, we visit the neurosurgeon to discuss plans for her next surgery to continue rebuilding her skull.  We're hoping that he can continue to wait into the summer, when our schedules all calm down a bit...we'll see how patient he can be.  The idea of surgery now - days (weeks?) in the hospital, trying to keep this new walker from escaping her crib...ugh.  Procrastinating won't help, but it is the least amount of fun I can imagine for our summer.

Monday, March 10, 2014

6 Months Post-Chemo

Scarlett had an MRI last week.  It was clear!  We didn't have too many concerns, but that doesn't mean much.  She's doing great, so we will wait another three months before we scan again.

We had to wait quite a while for her turn in the MRI, so daddy made sure to keep her entertained.


  

She is teetering on the edge of 30 pounds, and has grown just tall enough to need 2T and 3T clothes rather than 24 months.  The doctors are watching closely to see that she continues to grow, as children with such extensive tumors and treatment often do not grown appropriately.  So far, she's okay (still short for her age) but we are watching carefully.

We have noticed some strange episodes, and we are all pretty sure she is having seizures. This has come up several times, so it is not much to note, but this time I think she will need medication. Her doctors are not concerned, and have essentially been waiting for this. They know we don't want to give her medication unnecessarily, but the concern that these seizures may disrupt her cognitive development is mounting. We would rather give medicine twice a day than have her regress or be uncomfortable. 

A little medicine is minor for us, so we will see how it plays out over the next few months.  We are also going to be seeing an ENT specialist to see if they can give us any insight into Scarlett's swallowing difficulties.  We can only attack one concern at a time!

I found out this week that a piece I wrote about Scarlett will be published in a medical journal.  Narrative Inquiry in Bioethics is publishing a special edition all about parent experience with pediatric brain tumors.  My piece was chosen as one of the few to be included in the printed journal, so I am very proud!  I will share it as soon as it is officially out.

In my last post, I mentioned NickyBear, who entered hospice.  He passed away this weekend.  Another baby lost, another family shattered by brain cancer. 

Monday, February 17, 2014

Valentine's Day 2014

V-day has come and gone once again, and I feel like this year we really made progress.

To recap:
Feb. 14, 2010 - I found out I was pregnant.
Feb. 14 2011 - Scarlett's first dose of chemo.
Feb. 14, 2012 - Scarlett had surgery to place a feeding tube.
Feb. 14, 2013 - quiet...sitting at my parents' house.

Last year, we were doing well, but this year, we set a goal of being moved out by Valentine's Day...and we did it!

There was nothing too fancy about our Valentine's day - it was exhausting at school that day (me in the classroom with 25 sugared-up kindergarteners and Chris working in the muddy garden) so we were both happy to sit and enjoy a nice dinner at home with Scarlett.  I couldn't help myself from thinking about how much has happened in the last 4 years...in a way, we've come full-circle, with Scarlett doing so well and back in our own place.  I know better than to think it is complete - we're never out of the woods with this tumor - but we are back on track to feeling like we are making forward motion, and it feels GOOD!

We're all moved in to the new house now.  It's great - Scarlett has a playroom (that we share as an office and sewing room); we have a big kitchen that fits all the great stuff we have had in storage for almost two years.  A big garage for storage, a backyard to play and garden in - so much space!  We are still getting settled, but it's all going well so far.

We have been working on filling up this big house, since the combination of a much smaller previous home with the purge of moving into storage two years ago meant we had very few big pieces.  We couldn't get too wild, so we have limited ourselves to Craigslist, thrift stores and hand-me-downs.  We have done great so far - couch and loveseat from Craigslist for $75, rug from the thrift store for $30, and several small pieces from friends and family who are downsizing.  We even got a great rocking chair and entertainment center (which we are using as a coffee table for now) from a blog reader nearby (Thanks, Jamie!  Sorry again that Scarlett was so grumpy!)  We did get one big gift: my grandma wanted to make sure we had clean clothes (and appliances with warranties) so she bought us a new washer and dryer - but even those came from an outlet and were about half off!

Scarlett loves the new house, and has found all kinds of ways to be adventurous here.  Here newest game is to push the dining chairs up to the kitchen counters and climb up.  Luckily, the chairs make a terrible racket on the tile floor, so she is never very sneaky about it.  She is already making friends with neighbors as she walks laps around the block in her walker; she even made it most of the way around the lake across the street - it's about a mile around, so we were pretty impressed!

She has a new trick this weekend, too - she can now stand up from the floor with no support and take several steps.  Tonight, we counted 16 steps from daddy to momma!  We're going through the typical walking milestones at a snail's pace, but she's doing it!  Despite all the specialty gear, therapy and fancy shoes we have tried, I have decided that she is going to just have to learn the way other kids do - falling, practicing, and taking her own little risks - in her own time. She has a big job as flower girl in August, and I am getting more optimistic that she may just walk for it!

Her signing is blowing up, too - she's added signs for momma, daddy, water, home, Cosmo (our dog), socks, shoes and pear.  She has an approximated word for most signs, too.  The more we understand her, the less she has tantrums, so it is good for us all.

The first steps of her institutional deeming Medi-Cal (full-coverage insurance for certain special needs) set in, so she can finally get her new ankle braces and hearing aids, which have been withheld while we awaited the last several months of bureaucracy.  Now we are hoping the coverage is in full-swing before her MRI in early March.

Finally, yet another of our brain tumor friends is losing their battle.  Nicky suddenly began hospice this week after the return of his tumor.  He went through much of the same treatment as Scarlett as an infant, plus additional radiation and hyperbaric oxygen treatments for the resulting damage.  He has deteriorated very fast, and his family is now left to make him comfortable as the tumors take over.  I hate it, and it seems to be happening over and over and over lately.  We've lost so many kids in the last few months; something has to be done.

Thursday, January 23, 2014

New Chapter

There are some big changes in the air!

We're moving!  We've been living with my parents for about 18 months.  It's been great to have somewhere safe and dependable to live while we recovered in many ways from the stress of Scarlett's diagnosis and treatment.  We started to casually look at available rentals in the area to get an idea of what might be out there, and the perfect place popped up!  We signed a lease, and we'll be moving February 1.  It's a very nice house is a great neighborhood; we decided that we could not risk the hard-fought IEP, so we had to stay in the same city (and IEP is managed by a school district, and would have to be renegotiated with a new school district).  We'll have plenty of space, a backyard for Scarlett and Cosmo to play and a lake across the street.
Keeping a non-eater occupied in a restaurant...sock hands!
Of course, moving is it's own brand of stress, but we're trying to stay focused on one small step at a time.  It's a huge change financially, so we have to be careful.  It will be tricky for a few months while we adjust, but we have a plan.  We are looking for a few things we don't have - a couch, washer and dryer are first on my mind - on Craigslist, in thrift stores and garage sales, and everything else will come together eventually.  Most of what we have has been in storage for a year and a half, so it will be like Christmas all over again as we unpack!

We're very excited, and feel like moving is the end of this recovery chapter.  When we moved in to my parents house, Scarlett was doing well, and we thought we were completely finished with the stress of chemo...just to have more tumor found a few months later.  Our recuperation took a bit longer than expected, but we still feel like we have made good progress in finding stability financially, medically and emotionally.  I don't know what will happen next - we're always wary of the chance Scarlett could relapse again - but we will just keep managing it as it comes.

Cutest protest nap in the doorway after a tantrum.
It's a new phase for Scarlett, too.  Her little body is still recovering, and we are all learning how to manage the long-term effects of the treatments she has endured.  Over the last month, we have been dealing with her immune system.  Everyone in our house has been sick, but she got a nasty infection that has lasted for several weeks.  She is on her second round of antibiotics with eye drops after both her ears and eyes were goopy.  She seems to catch everything that walks by her.  Despite the runny nose and all, she takes it like a champ and doesn't let it slow her down.

We're seeing her adjust more and more to life off treatment.  She is learning signs all the time - sh'es regularly asking for her iPad, saying "home", greeting everyone who comes in the room (over and over again!) and trying new signs she sees on Signing Time.  
Evidence of her pushing a chair to where she wants, climbing up and playing with the light switches and whatever she finds on the counter!
We're happily packing, planning and settling in to life.  We're busy like always, and still knee-deep in concerns, particularly around Scarlett's medical coverage that is in limbo right now.  We keep moving forward, and hoping that things will settle themselves if we continue to explore all avenues.

Tuesday, December 31, 2013

Scarlett's Year in Review

This year was full of joy, challenges and victories for Scarlett.

January
Scarlett began chemo for the second time in her little life.  She also learned to crawl out the dog door!
February
Scarlett was the NEGU Kid of the Week for the Jessie Rees Foundation!
March
A clean MRI - yea!
April
Scarlett started walking with the help of her walker.  It took her about 2 minutes to figure out how to change directions, go up driveways and over edges.
May
We went to camp to spend the weekend with other families of brain tumor kids.  We love it!  Scarlett lost her last pacifier, so we said goodbye to them!
June
Scarlett had to go to the ER after a night of vomiting.  Thankfully, it was just a stomach virus.  Then, we went on vacation!  We got to meet two other families with kids who have battled the same tumor.  We had a great day at the San Diego Zoo
July
Scarlett became an adept climber.  She started to get into everything, climbing onto chairs, tables and counters.  She participated in her second year of Relay for Life, and was awarded "Most Inspirational Relayer"
August
No mo' chemo!  Scarlett finished chemo with no sign of tumor.  She started her second year of preschool.  She also got glasses, which she took approximately 2 weeks to break.
September
We went camping twice in September, once with other brain tumor families and once with Scarlett's school.  Both were wonderful, and we learned a lot with both groups.
October
Scarlett turned 3!  We hosted our third annual blood drive to celebrate, collecting another 70 pints of blood for Stanford Blood Center.  We also secured her school needs through an IEP after months of preparation.  She had another clear MRI - yea!!
November
We made huge strides in our continuing quest for support services for Scarlett, including a handicap placard, respite care and the next steps toward long-term insurance.
December
Scarlett made the move to a toddler bed this month.  She is working hard to walk, sign, talk and eat on her own.

Thank you to all who have been following this girl in 2013 (and beyond).  I know I don't post as much anymore, but we still deeply appreciate the support and cheering that comes from our friends here.  I hope everyone has a happy new year!  Bring it on, 2014!

Wednesday, December 25, 2013

Christmas 2013


Helping daddy cook dinner
Suspicious of Santa
With cousin Caleb
Christmas in the Park




Breaking into the stockings
New doll house from Santa, complete with furniture, doll family, Christmas lights and ghost in the attic...
...and grandpa's addition of a "fragile" leg lamp!



The TV fire replaced the real one since it we've been on no-burn days for weeks.


Boots with handles to put them on by herself!
Merry Christmas!