Friday, May 31, 2013

Labels (and Round 6)

We just got home from Scarlett's chemo infusion.  Two drugs in, no problem.  It was a relatively fast one - only about 5 hours from starting labs to de-accessing.  She is asleep, and will probably be up half the night wanting some comfort.  The other effects remain to be seen - each cycle has been a little harder than the last, particularly on her stomach.  We're hoping we can manage her nausea with medication for the next two weeks to keep her weight on track and to make her more comfortable.  The older she gets, the more upsetting and disconcerting it is to throw up.  On the flip side, though, we feel like it must be "working" - chemo with no side effects felt too easy, not effective enough.  Quite the double-edged sword there.

While we were in the clinic room, we discussed the newest label we have for Scarlett: Intellectual Disability.  In the old days - and still in many federal, state and other documents - it was termed as "mental retardation".  I'm not sure the change in phrase helps the meaning.

This stems from our ongoing battle to secure medical insurance for Scarlett.  You can read more about our struggle with that here, but here's the basics:  Scarlett has been covered by Medi-cal (California's Medicaid) for a while, thanks to our meager income throughout her first treatments.  She qualified based on her qualification for Supplemental Security Insurance, which is based on our income.  Once I began working again, we no longer qualified, so we need to find a new form of insurance to cover her.  She is impossible to insure without a group plan (where pre-existing conditions are accepted by federal mandate), or by government coverage.  We currently pay for COBRA from Chris' old job at Starbucks because it is nearly half the price of insurance through my school district.

Heck, if I were an insurance company (thank godness I'm not!!), I wouldn't want to take her, either.  Her current chemo, per the EOB's we receive, costs about $25,000 a month (and is not FDA approved for pediatric patients, so is therefore not going to be approved by most insurance companies).  Her MRIs every other month are around $27,000.  A shunt malfunction can happen anytime, and has fun anywhere from $50,000-200,000 or more, depending on what is needed.  We get a shipment of medial supplies for feeding her every month.  She is getting new custom foot braces on Tuesday - I'm sure those don't come cheap.  And, of all things, the kid is determined to eat her $5,000 hearing aids.

After my last post on this, some readers and friends suggested we look into Institutional Deeming (ID).  By getting a doctor to certify that Scarlett is in need of such care that she would otherwise be institutionalized or hospitalized, she can qualify for a whole new round of services that are long-term and independent of our income, including full-scope oncology, therapeutical and other medical services.  We had heard about ID from a family at camp, but their description made it sound like something far outside of Scarlett's level of need - fully wheelchair bound, non-communicative, etc.  Now, however, we better understand that ID is for several long-term diagnoses.  This sounded like the solution for us, and so we have been working for months to make it happen.

We learned that, in order to qualify for ID, Scarlett would need to first qualify for long term services through the Regional Center, a county service for children with special needs.  She is currently a Regional Center client in their early intervention program, but on her 3rd birthday, in just a few months, she will be cut off from those services.  Regional Center provides Scarlett with her fantastic preschool program at CEID.  To keep Regional Center services past age 3, we needed to Scarlett to qualify for one of the few categories of disability that Regional Center serves.

The categories are pretty clear:
1.  "Mental Retardation"
2.  Cerebral Palsy
3.  Epilepsy
4.  Autism
5.  Anything that looks or sounds like mental retardation but cannot actually be called such (a catch all for the myriad of developmental disabilities that may need services.)

Since she is not epileptic or autistic (despite having syptoms that echo both), and is not technically diagnosed with cerebral palsy (though we have gotten previous services based on her similar presentation), she had to fit the "retarded" categories.  And yes, the documentation, social workers and brochures are all still using "mentally retarded" to describe this population.  There is no special category for "has half a brain left after massive tumor, stroke, shunt malfunction and chemo toxicity.  Cute, social and very well cared for - just need insurance."

As usual, our team of doctors is on board to make it happen - they are Team Scarlett through and through. And so today, the key neuropsychologist evaluation came to us, describing how Scarlett fell into the .1 percentile - lower that 99.9 percent of children her age, in cognitive, language, motor and adaptive behavior development (I take it as a personal victory, however, that she scored at 2% in Social and Emotional functioning - her strength!) Then, she made sure to note, in bold letters, Scarlett officially "meets the criteria for intellectual disability."

I am not sure why this hit me so hard today.  This is what we wanted, what we asked for, what we desperately NEED to get her what she needs.  But it came down on me like a ton of bricks.  It seems like such a loss for her, yet another hit to someone who has already taken so many.  A small part of me wanted the neuropsychologist to come back to us, saying "There's just no way - she scores too high, is developing so fast.  You'll have to come up with something different."  I wanted, just once, for the better sounding, easier to hear, easier to accept diagnosis.  But, no.  She's mentally retarded, and forever will be.

A part of me has been waiting, all this time, since the first awful day she was diagnosed, for this to be "over".  After her first surgery, I thought it might be over, but then came chemo.  After the first year of chemo, I thought it was over, finally, and "all" we had to do was therapy, but eventually, she would come out somewhat "normal" and that all of this would be part of her past, not her forever.  Then the tumor came back, that bastard.  Now it feels like we will never, ever be free.  It lurks, no matter how far out, and I don't think I will ever feel safe again.  And now, there is a document, on my computer, my phone and in every file in every office we visit and attached to her social security number in the state and federal databases (if those even exist, I guess) that says she is permanently, irrevocably damaged. 

And I know that, at the heart of this, it is just a label that gets her name in a system.  It puts the right check mark next to her name that releases all the benefits that she deserves.  For that, I am truly grateful, because I honestly do not know how we would have covered her otherwise.  But it hurts, and I am tired of taking on the hurt.

As usual, I will try to focus on the positive:  she should easily qualify for Regional Center services.  That means we can get In Home Supportive Services (small payments to us as her full-time caregivers), respite care (trained professional relief for small periods of time) and, in the end, institutional deeming for Medi-cal.  This may take a few more months, but the wheels are in motion, and that is a relief.

But, as my own therapy today, here's what I see:

Wednesday, May 22, 2013

Crisis for Some, but Just Another Day for Scarlett

Round 5 of chemo is fading away, and Scarlett is coming out the other side. She's feeling pretty good overall...

Music time at school

Discovering self-portrait capabilities on momma's phone

Last week, Chris saw what he thinks was a seizure while Scarlett was in physical therapy.  Her therapist agreed that the dazed stare and unresponsiveness looked like a seizure.  We watched her all week, and still have not seen anything else like it. Seizures have come up several times in Scarlett's history, and we were clearly told before that unless they impede her development or daily function, we won't treat occasional seizures.  So, we did not panic, and made sure to discus with her doctor later that week.

When the appointment came around, her doctor was only mildly surprised to hear about a seizure.  With all of the surgeries, tumor damage and blood loss she has experienced over the last two years, seizures are essentially expected.  However, she did add something that caught me off-guard: in the list of possible causes, she mentioned the stroke she had during surgery.

I didn't know she had had a stroke!  It had been mentioned, once, in the PICU after her first tumor resection, but never confirmed.  Since that was at the other hospital, two years ago, it is obviously a known element of her chart.  How did we never hear about that?!  I was so surprised, and it was said as though we clearly should have known, I couldn't even ask more about it because I was so baffled.

I hate surprises like this, but it does not change anything we do now.  It just adds to our understanding, one more tiny piece of the Scarlett puzzle.  Unless any of this starts to disrupt her daily life, we just keep going the way we have been.

Otherwise, we discussed our regular topics: all of Scarlett's fun tricks, and vomit.  The puke still plagues us on a daily basis.  We have moved back to medicating every day to try to keep more in her.  I am so very, very tired of vomit but it seems to be a steady part of our lives for a while longer...we are expecting it to get worse before it gets better.

The best part of the appointment was being approved to bump chemo for a few days to take her on vacation!  We booked a little weekend trip to San Diego, where we will get to visit the zoo, the beach and best of all: meet Riley, another kiddo who has fought the same tumor as Scarlett!  His family lives across the country, but will be visiting San Diego for his Make-a-Wish trip.  They invited us to meet up for a play date, and we are going for it!  Even better, another of our GBM friends, Lily, is able to meet us there from their home in SoCal, so all three families will get to play!  It's still a month away, but I am very excited!

Saturday, May 11, 2013

Chemo, Camp and Medical School

I realized far too late that I did not post the MRI results here.  I put it on Facebook, but not here, and I apologize to anyone who was worried.  The MRI was clear, and Scarlett is set for another 2 months.

She had chemo the next day.  It appears that the chemo is getting more difficult for her to tolerate with each dose.  She had a hard time this round - fussy, clingy, nauseated and constipated.  She has not been able to play on her own or entertain herself for a few weeks, meaning that we are constantly trying to find a way to get something done with her in one arm.

The next day, we headed out to Camp Okizu. This was our second time visiting this camp, and I am so glad that it is available, and that we are able to get ourselves there in the midst of treatment.  I grabbed the wrong memory card for my camera, so we unfortunately have no pictures, but a good time was had despite the photographic evidence.  We met several new families, and reunited with a few from previous camps.  This time, Scarlett was not the youngest, nor the most recently diagnosed.  She was, however, one of very few receiving chemo while at camp - we had to keep the pre-measured syringes and latex gloves in the camp refrigerator for the weekend.

Despite the chemo, Scarlett had fun scooting around the dining hall, getting passed between all the wonderful volunteer counselors and snacking on camp food.  We had hoped that she would get a chance to swim in the lake since it was so warm, but thunder and lightning came out of nowhere and forced us inside for the rest of the day.  Campfire was inside, but we still got to make s'mores in the big stone fireplace, so all was well.  

My favorite part of camp is the most difficult part - parent discussion sessions.  Having a chance to share, and hear others' stories, is fascinating, emotionally exhausting, and empowering simultaneously.  Each family's story is unique, but so many of our paths have had the same landmarks.  I (obviously) enjoy, or feel relieved and eased by, sharing what we have been through, but many do not.  To have to dredge up all the feelings that a child's cancer brings is difficult, and many choose not to participate or give minimal details for self-preservation, and I can understand that, too.  I so appreciate hearing how their families came through it, as it gives me some perspective on where we are and where we might be one day.

Camp was not our only chance to rehash it all this week.  On Wednesday, Chris and I made a trip to Touro University in Vallejo to speak with osteopathic medicine students about our experiences with pediatric brain tumors.  A parent from camp who is a student there was looking for other parents to join her in sharing with the medical students some of the issues that patients and their parents encounter.  We presented to a lecture hall with two other kids' parents about some of the particularly unique details of Scarlett.  Each of us had a few images from our kids' treatment - including Scarlett's MRIs and 3D CT scans - which got audible gasps throughout the talk.  After we finished speaking, the professor came up to explain to the first-year students a few of the terms we had mentioned - turns out we have a pretty advanced medical vocabulary!

The second half of the presentation was a Q and A with the students.  Interestingly, they wanted to know much more about the emotional and psychological toll on our families than the medical side.  It is hard to explain how helpless it feels in the first days of diagnosis; all three families dealt with different issues, and handled it differently, and none of us could say that we had done it "right".  In the end, I felt like in just the three stories they heard, the students were given a very god idea of the patient side of this kind of diagnosis.  I enjoyed doing it - if there was some kind of speaking circuit for this, I'd be there.

Now, Chris and Scarlett went to visit his mom for the weekend while I stayed home to catch up, both at home and work.  In texting back and forth, I've heard that Scarlett is not having a great time, as she tossed her last pacifier out of the car at some point.  Missing the first two pacifier weaning nights may be the most generous Mother's Day gift I ever receive.