Thursday, October 31, 2013

Monday, October 28, 2013


Scarlett's next MRI is tomorrow, and I am having the worst case of scanxiety yet.

I lost count of Scarlett's MRI's years ago - 15? 20?  Somewhere around there, at least.  I remember the first one, but after that, they all begin to blur.  However, the sick feeling in the pit of my stomach that comes with it is a clear memory.  It comes with racing thoughts of what will happen next, imagining how we will her the next news, grief and old memories, sadness and fear. 

That's scanxiety.  Every parent of a kid with a brain tumor has it, as we have all learned what cn happen after a bad scan.  Some have learned to manage it, several years down the road.  As scans get further and further apart, we hear it gets easier.  Our doctors told us that they see people begin to relax more when they hit the once-a-year scans.  I can't even imagine waiting that long to know; we've been living scan-to-scan for so long now, I am not sure how to go about it any other way.

The last two months off chemo have been great.  Scarlett feels better - no more puking, much more tolerant of varied foods and regular meals.  She is more interested in food, in playing and in other people.  She is doing well at both of her schools, and is being her normal toddler self at home.  We knew that a scan was due - the last was at the end of July - but we hadn't heard about an exact date.  Chris was going to call Thursday.

That happened to be the same day that we got a call prompting us for the already-scheduled scan.  Not sure how we missed it, or if we ever actually knew the date, but here it is.  The second I heard the voicemail, I got chills.  I felt sick.  I was at a break in a day of training for work, and the rest of the day became a blur.  I went from feeling fine to being panicked.

And now, I am finding things to make me worry more.  Scarlett hasn't been walking without her walker in a few weeks.  Is something interfering with her motor skills?  She has had some major meltdowns.  Is she having headaches?  The small logical part of my brain (whatever is left there) tells me that there is nothing, but the grief-stricken, traumatized, emotional-mom majority of me cannot stop worrying.

We tried to get out and give ourselves a break over the weekend.  We had dinner out, saw a good movie, but on the way home, my thoughts wandered and there I was, in panic-mode.  Chris, who is usually the more level-headed of the two of us, heard my concerns and couldn't stop himself from joining in.  By the time we got home, we were exhausted and felt worse than when we left.

It catches me off guard, still.  I keep expecting to feel prepared, ready for the scan to be clean, like it usually is.  Or it was, until the damn tumor came back.  We started to feel comfortable, like it as going away, until this time last year, when it reared its ugly little head again.  Now, when we feel like we are over-reacting, we only have to tell ourselves that it already came back once, no reason it can't again, and worry floods in.

I think the difference this time is the end of chemo.  It's the first scan after stopping chemo.  As much as I hate those awful drugs, they give me a confidence.  Without the drugs, she's open, exposed.

I hate this part.  I hate the feeling that this will never be over, or that the worst is ahead.  I see families like ours who are years out with clean scans, and feel like they have mostly all figured out a way to move on.  We haven't been able to do that yet, and it is eating at me.  We are still in recovery mode.  Our whole life - our jobs, our finances, our marriage, everything - are still bruised and beaten by this tumor, and are trying to come back.  Every scan holds the chance that we go back to the beginning yet again.

We won't hear real results until Thursday when we visit the clinic.  Scarlett will be going for labs in costume (which I just finished making!) and we have plans for trick-or-treating after.  Until then, I keep trying to breathe, moving forward one step at a time.

Sunday, October 27, 2013

Birthday and Blood Drive 2013

We visited the pumpkin patch to celebrate Scarlett's birthday.  The whole family - Chris and me, my parents, sister and nephew all picked a pumpkin!  Scarlett and Caleb had a great time tromping through the hay and pumpkins.

Caleb helps push "Cuzzie" through the hay.

Grandma pulls the wagon
Chris encouraging the little ones to burn off some extra energy!

Scarlett doing trick moves in her walker.
Sadly, after a great time, as we paid for our pumpkins, Scarlett fell right on her face.  A bloody nose breaks up a party pretty quickly.  And, of course, she had a bruised, scabbed face for the blood drive and her school picture day!  At least her glasses survived this time.

That Friday, we got all set for our blood drive.  The Stanford Blood Center brought out their bloodmobile and an entire set up for inside the cafeteria at my school.  We set up a projector to show movies to help entertain kids, plus a popcorn machine, candy bar and hot dogs for everyone who came through.

The fantastic cake, thanks to my friend Jennifer, who has made all three of Scarlett's birthday cakes!

More cake?
 Unfortunately, Scarlett was nt having the best day, so she was absent for most of the event taking a nap at home with Grandma.  She did make an appearance for her cake, and to give smiles and hugs to everyone who was there.

Her barely-patient face, complete with scabby nose.
Tired mommy and daddy after a long day - and this was a while before we both donated blood!
 With everything happening with Scarlett this year, we were not able to do as much for the blood drive as we have in the past, but we still had a respectable 70 or so units donated.  it was a very long day (after I taught all day and Chris lead several classes through the school garden), but we are so proud of what we have been able to do over the last few years.

Thank you SO much to everyone who came out to donate, and to those who helped make it all happen: Tim and the Stanford Blood Center staff; Jennifer Kitajima (at the last minute!); my partner in kindergarten madness, Lindsay who gave up her classroom prep time to grab my camera and take the pictures!; Sandy and Alex, who came just to help (and thank goodness they were there!); my parents and sister for wrangling Scarlett all day; the Castellanos family who helped set up; and Barbara who came to rescue us as we were left to clean up by ourselves and couldn't fit it all in the car!

If you have never given blood, it is a very important thing that people must do to help other people.  Yes, it hurts a little, and yes, it takes a few minutes.  There is no replacement for human blood - people must give it to save other people's lives.  Scarlett is alive thanks to donors in our area who were kind enough to donate their A+ blood for an unknown person.  Not everyone can donate, which puts an even bigger responsibility on those of us who can.

Wednesday, October 16, 2013

The Little Miss at Three

Miss Scarlett is three today!

Scarlett weighs about 26.5 pounds, finally gaining a little now that the chemo nausea has passed.  She is somewhere around 33 inches tall.  She wears size 24 months, and is just creeping into 2T in some things.  Her tiny feet have not grown much - still wearing a size 5.5!  

She likes to play with cars, trains, trucks, buses - anything with wheels.  She also likes her "babies" - any dolls or stuffed animals.  She can be found snuggling them and giving them kisses whenever she finds one.  She thinks it is very entertaining to push empty boxes around.  She still loves to swing and her baths, extra warm, where she splashes, kicks and blows bubbles.  She likes to watch Yo Gabba Gabba, Sesame Street or Signing Time, breaks into dancing as soon as any music is played.  She enjoys sitting in my lap to read a story, pointing to pictures.

We're finally getting a sense of what she has to say.  She has a solid list of signs she knows and uses regularly: want, more, cookie, cracker, banana, all done, walk, swing, bath, iPad, pudding, eat, please, and a few more.  She can say banana (bamama), walk (awk), cracker (ca-ger), mama, dada (baba), bike (ba-k) and bath (baaa).  She gives hugs and kisses on demand (and I ask all the time!)  She can point to her nose, eyes, hair, tummy, legs; she understands a few common requests like "stand up", "lay down" and "knock on the door".  She still doesn't seem to understand the word no (despite hearing it frequently!), or any negative facial expressions - not sad or mad; she just giggles no matter what we do.  She waves hello and goodbye (or blows a kiss if you're lucky).

She's ready to walk any day.  She can take off running in her walker, but is still hesitant without the support.  She climbs up, over and under all the furniture in the house, even pulling boxes or chairs around to reach new things.  She jumps on the couch or in her crib.  She still goes through the dog door at any opportunity; the goal seems to be mainly to get on the other side and wait for us to get her.  She loves to play by herself in her room, just upending baskets of toys and looking at each one.

She is more and more amazing each day.  She is funny, sweet and easily excited.  She is sneaky and mischievous.  I love to see her face light up when one of us walks in the room, or when she figures out a new trick.  She proves to us each and every day why we fought so hard all this time. 

Sunday, October 13, 2013

An Amazing Year

This week, Scarlett turns three.  I can hardly believe it.  I can't stop looking at pictures and videos, amazed at how far she has come.

See more videos on our YouTube channel.

Thursday, October 10, 2013

The Big IEP

Today was the big IEP meeting.  We have been planning it for weeks - when we would do it (had to be before her birthday next week), who would attend and what we wanted to be sure was considered.  We have talked to specialists in every field related to Scarlett's needs, discussed the fine points of parent's rights with advocates and other parents, and talked through the details with our fellow brain tumor families at camp.  It has been an all-consuming, stressful, anxiety-filled process that is finally over.

An Individualized Education Plan (IEP) is developed to ensure special education services for children age 3-18 (and beyond for some).  It is a very technical document that establishes annual educational goals for a student, including measurable reference points through the year.  It covers all aspects of the academic environment, including school placement, assistive technology, classroom environment, testing accommodations, physical and occupational services related to academics...the list goes on.

When a child with special needs turns 3, the school district is legally mandated to assess the child, create the goals and provide services to that child.  Sometimes, it is just a need for weekly speech sessions, or a placement in a general education classroom with some minor modifications.  For Scarlett, it was much more intricate.

The assessments happened over two weeks, when she was put into our district's special education preschool class.  They got to know her, observe her in the classroom environment and do the extensive battery of tests that help to narrow down what her needs really are.  The team to assess her included the classroom teacher, a school psychologist, a speech therapist, an occupational therapist, a vision specialist, a deaf and hard of hearing specialist, an adapted physical education teacher, the district nurse, signing interpreters and a bevvy of other district personnel to manage the details.  Each person had a test (or multiple) to measure Scarlett's abilities and gauge what might be an appropriate placement for her.

Today's meeting was the culmination of all the testing.  We received pages and pages of reports from each of the different departments, plus updated reports from her current teacher, current speech therapist, and non-academic PT and OT.  We were hoping to have them a solid week ahead of time, but after some delay (we heard off-the-record who!), we got them all Tuesday evening.  That gave us one full day to review them all, look for any inconsistencies with her previous assessments (many of which have been done regularly since she was first diagnosed), understand the jargon and have her current teachers review them.  It was tight, but we got it done.

As the days went by, the meeting got progressively larger, with each person who has a vested interest in Scarlett's education wanting to be present to support her.  It ended with a 4 tables-worth of people: Chris and me, the director of special education in the district, classroom teacher who assessed her, district speech therapist, deaf and hard of hearing specialist, school psychologist, district OT, PE teacher,  vision specialist, district nurse, a general education teacher, Scarlett's current teacher, speech therapist, school director, case manager and OT.  That's a total of 17.  I've been to many IEPs, and I've never seen or heard of one this extensive.

The agenda of the meeting was a full page of conversations that needed to be covered, including reviewing the reports together, discussing and amending the proposed goals, qualifying her for specific categorical disabilities and finally deciding on a placement.  Following all the parent guides we read, we brought snacks (sliced apples and s'mores bars, plus lemonade and sparkling water).  It helped to relieve a bit of the tension as we walked in to have everyone see chocolate on the table.

We started by each person introducing themselves, and then I really wanted to talk briefly about Scarlett's history.  So much of what has happened is not in the records, especially not the educationally-relevant ones.  I spoke briefly about her diagnosis, surgeries and complications, how far she has come and how much is unknown about her future.  It was very important to me for the team to understand that just because she is done with chemo, she is not "all better."  I ended by showing before and after MRI pictures, the CT scans that show the damage to her skull and finally, a picture of her now.  

We had to discuss which of the Individuals with Disabilities Education Act (IDEA) categories Scarlett would qualify for in order to get services.  They considered several, including language, traumatic brain injury, intellectual disability, low incidence disabilities and a few others, but settled on a primary qualification of Multiple Disabilites with a sub-qualification of Hearing Disability.  The others, including low incidence, which apparently gives the district extra money for Scarlett-specific equipment, will all be listed, too.  The director said they have never had a child who has qualified under so many categories - go Scarlett!

After two hours of reviewing reports and goals, and without having any real arguments or disagreements about what they saw, it was time to discuss placement.  This was where we were really nervous - we feel strongly that Scarlett needs to remain in her current school for language support.  She has made fantastic progress there, and we don't want to lose any ground.

Time was running out, so the director asked us if we were comfortable cutting to the chase.  We said yes, and she laid it out:  They offered to keep her at her current placement 4 days a week, plus add a 5th day of socialization opportunity at the local school.  She will continue to get speech therapy twice a week and add OT and PE twice a week each. To top it all off, rather than the district providing a bus or taxi service to get her the 35 miles to school (which is required for any out-of-district placement), we will be reimbursed for mileage each month.

It was that easy.  Everything we wanted, handed to us.  Everyone left happy, and, at least for all the non-district people, astonished.  That NEVER happens.  Districts almost never approve a private, out-of-district placement without a fight. 

We are still in shock that it went so well.  We were prepared for a battle, or at least an argument, and are still amazed that it did not come to that.  We are so grateful to everyone who put so much time and energy into assessing Scarlett, talking with us about what we knew and wanted for her, who trained us how to read the reports and what to say and ask for, and especially to those who sat there with us, saying only what they needed to in order to support us in this very stressful meeting.

So now that we've survived the dreaded IEP, here are our tips to others:
  • Be relentlessly positive and understanding with the people who are working with your child.  When something does not happen as expected, be firm but polite.
  • Read everything you are given.
  • Find experts on every potential topic whenever possible, and be prepared to refer to published research when you need to defend your point.  We didn't have to, but we had a binder full of articles to back up any of the potential solutions they might have proposed (i.e. a signing interpreter or the local school for the deaf)
  • Be reliable and consistent in communication.
  • Bring snacks and be polite in the meeting.  As a teacher, these meetings, after a long day at work, are brutal.  A simple gesture of "we're all in this together" goes a long way to maintain a positive vibe.
  • Ask every question that you come up with.  Don't let yourself feel swindled or run over by the jargon, even if you think it might sound dumb, or it takes a few minutes away from the agenda.
  • We are going to, in just a few minutes, write thank you notes to everyone who attended.  We will meet like this once a year; the staff may come and go, but we want our "good name" to be passed through each year to maintain a positive relationship with the district.
I am halfway through a delicious glass of wine, and ready to let this wild day end.