Thursday, March 14, 2013

Go, Go, Go!

Round three of chemo has been relatively kind to Scarlett.  She has had a few bouts of nausea and has taken some extra naps, but on the whole is feeling pretty good.

Scarlett has made some great progress in the last few months.  Her doctor has been asking us t video her around the house so she can see what she is doing outside the hospital (since she is only seen during her chem infusions, her mobility is very limited when we are here.)  So, our phones have been trained on her, trying to catch her many tricks.  She is learning and changing all the time.  She is currently just over 25 pounds and gaining.  She is crawling, climbing and cruising everywhere.  She is most interested in her zebra scooter bike.  She can ride it for hours each day, and has learned to steer and control it despite its fixed wheels. She can even get it over cracks or the sliding door track, and gets mad when she can't go up steps (though she was also not pleased when she accidentally went down the step into the living room...) Since the weather has been warming up, she has been outside enjoying the sun.

She has gotten very adventurous.  So much so, that she is getting herself into trouble wherever she goes.  She has been falling, bumping and bruising on a regular basis.  It makes us nervous, but we have to let her learn to trust herself, and to explore on her own.  Normal kids get bumps and bruises, so we have to let her do that too...we just hope we don't upset her neurosurgeon, who has spent hours building the rounded head that she enjoys banging against her high chair!

She has also learned several new signs. She now regularly signs "more", "want" and "all done". She can imitate "mama", "diaper", "pacifier" and "happy" at appropriate times.  Her auditory receptive vocabulary (words she understands others saying) is exploding, especially for songs.  She knows the signs for several of the songs they sing at school, and shows understanding of words and phrases we use every day.  Her spoken vocabulary is still negligible, but she is babbling (as I type: wawawa ga ga babababa....)


Last week, we were excited when she scored at her age level for the very first time.  We are used to, and somewhat numbed to, her normal scoring of about a year behind her age. Her overall development is about on par with a 10-14 month old.  It has been this way since we first learned about her tumor and its effects.  It's hard to see her compared to other kids her age, but we know that progress is progress, no matter how it has to be labeled by standardized tests.  However, this time, they tested "self care skills" - essentially dressing herself - and she was at 2-2.5 years!  She can take off her shoes and socks (and in fact, never keeps them on); she lifts her feet for socks - one then the other; she can put her arms into and pull them out of long sleeves with minimal help; she can take short-sleeved shirts off on her own when she wants to; she pushes her feet into and pulls them out of pants, and can pull pants off her legs when laying down.  If I hold a jacket up to her, she puts her arm into the sleeve.  She brushes her hair (or at least puts the brush to her head and hits herself in head), and puts the toothbrush in her mouth (when she is feeling very agreeable).

The next round of testing is right around the corner.  We just scheduled the first of many meetings for her Individual Education Plan (IEP) with the school district.  It has the potential to be a very challenging transition, as the school district assumes the responsibility (and costs) of her education and speech services.  We have been preparing for it for a while already, and feel like we have a good handle on what will need to happen, but it is the next hurdle that we must cross for her.

Wednesday, March 6, 2013

"No Issues"

We've been waiting to hear about the MRI since it was done Monday.  I was feeling anxious, so I sent an after-hours e-mail to the doctor.  Her response just came back: "The scan looks great.  No issues."

So I guess that's that.  I'll go back to drinking my wine and exhale a little deeper.

Sunday, March 3, 2013


Scarlett's MRI was cancelled at the last minute on Friday - apparently there was a patient in the hospital who needed an emergency MRI, and that pushed Scarlett out.  I was very upset, but it got rescheduled for tomorrow morning, so hopefully we will get it over with and not have to wait over a whole weekend to hear some results.

Chris and I are stuck in a very complicated mess with health insurance right now.  It is causing a huge amount of stress, and we have yet to find a solution.  It is confusing and long, so I don't expect everyone to read it fully - just need to vent it and see if I can come up with a way to make it work.

Right now, Scarlett is covered by two medical insurance plans; private insurance through Chris' old job at Starbucks (which we are playing COBRA to keep), and Medi-Cal, provided by the state of California for people with permanent disabilities and low incomes.  Medi-Cal was granted based on her qualifying for Supplemental Security Insurance (SSI) through the the federal Social Security program; in California, people who get SSI automatically qualify for full-scope Medi-Cal.  SSI has been termed a "gateway" service by many of the providers we see, as getting it opens the door to many other services.

Having Medi-Cal has been  huge relief.  Every medical cost associated with Scarlett's treatments - everything after our private insurance pays its part - is covered.  This includes her hearing aids and their batteries, chemo, hospitalization, surgery, nearly everything that we have encountered so far.  It covered formula when she needed it (now that we blend for her, we buy all her food), covered the FM system that lets her hear our voices better through her hearing aids, provided feeding therapy (denied by our insurance), weekly PT and OT (denied by our insurance), and even saved us from the exorbitant cost of chemo that was not covered by our private insurance (as much as $12,000 per dose.)  It has saved us, and has allowed Scarlett to make the progress she has.

When we first applied, we were desperate.  The insurance we had when Scarlett was first diagnosed was through my job; when I had to quit to care for her, the insurance lapsed.  The insurance from Chris' job was good, but had co-pays and did not cover some of the necessary equipment, procedures and treatments.  We had barely been able to swing it all on our combined income, but on his alone, we could no longer afford our rent, let alone the new medical expenses.  We needed help.  Medi-Cal and SSI were not the only help we found, and we were very grateful for it all - WIC provided some of Scarlett's infant formula and some staple groceries and EBT (food stamps) helped fill in other gaps.

After about 10 months of that, we were ready to make some changes.  Scarlett was stable, so I felt like I could go back to work.  Full time teaching made a significant change in our income, but could not change some inevitable effects - we had to move in with my parents, who had to sell the condo we had been renting (or living in...without paying a fair rent for over a year).  Scarlett still needs full-time care, so it made the most sense for Chris to take a turn being a full-time dad while I work.

This posed a problem for insurance.  By quitting his job, we lost his insurance.  We had planned to roll over to the insurance through my school district; unfortunately, the current arrangement with the teacher's union is for teachers to pay the full premium, which would be over $2,000 per month - nearly half my paycheck.  COBRA with Starbucks is abut half of that, but still a huge percentage of our income.  We applied for several individual insurance plans, but as soon as we had to disclose Scarlett's medical history, we were automatically denied.  She is legally required to be covered by an employer-provided plan, but independent plans can deny us based on pre-existing conditions.  So, to maintain our private insurance (for Chris and me, as well as whatever of Scarlett's treatment will be included), we have COBRA as well as Medi-Cal.

Here's the trick:  we are trapped.  To maintain SSI, and therefore Medi-Cal, we must stay below the income threshold.  That means no savings - we are allowed a maximum level of assets, including the value of our second car (currently my 14-year-old, handed-down SUV).  If we make much more money, we will be denied and therefore lose Scarlett's insurance.  We can continue to pay COBRA, but it runs out after 18 months (and who knows where we will be then).  If we want to move out of my parents' house, or ever have anything more than we can fit in a single storage unit, it would take work to we are just trapped here.  We would love to buy, or even just rent, a small house somewhere near by where I can work, Scarlett can get to school and we have some room for her and the dog to play.  That is so far off, it seems impossible.

We have already encountered some threat from SSI - in December, my district pays early (on the last working day of the month, before Christmas), so we deposited the check without thinking.  When our income for the month was reported to SSI, it included the check from November (deposited on Dec. 1) and from December (deposited when it was dispersed around Dec. 22).  This caused us to be denied SSI for December.  Because they determine eligibility AFTER dispersing checks, we now owe the Social Security Administration that month's SSI payment back.  There is no consideration for me not getting any pay in the month of January (that month's check was deposited Feb. 1) - it's based solely on our transactions.  It was our fault, but not something we even considered a problem - our total income never changed, just the date it was deposited.

We don't want to be reliant on this faulted system, but we need it right now.  We needed it when we first applied, and Scarlett's need has only increased since then.  We have been able to move away from the other assistance programs, but were so grateful that they were available when we needed them.  So many factors make it hard - we live in one of the most expensive areas in the country, by chance; my job has no way to get a raise or earn more (and I'll be lucky to not get laid off yet again); Scarlett's schedule is such that she requires a full-time parent for school and appointments.  We are not willing to compromise her development and progress at school, so that part cannot change. 

It looks like we may have a chance when California changes to the new "Covered California" program, which says it will offer a "easy-to-use marketplace where you and your family may get financial assistance to make coverage more affordable and where you will be able to compare and choose health coverage that best fits your needs and budget."  We're not sure yet what that will look like.

More than anything, I am frustrated.  I had to fight to get her SSI approved, writing letters to our representatives to speed it up from a months-long waiting period.  We have waded through oceans of paperwork, fought annoyingly inconsistent phone systems, and been talked-down to by phone agents on several occasions.  It is a maddening system to be a part of.  I can only imagine how difficult it would be if I did not speak English, was not able to read, or did not have the education I do to understand the process.  It continues to feel as though we are being punished for having a sick child, as though we made some kind of mistake that earned us a spot in insurance purgatory.  I can understand why someone might choose to not work, just to avoid the hassle of refiling their paperwork and risking the loss of everything that is keeping their child healthy.  I it much harder to work.

There has been a lot of attention given to the medical programs offered to people in the United States.  There in no question in my mind that there is a serious, embarrassingly terrible problem when it is this difficult and maddening to insure my ailing child.  I don't care which side you support; my child deserves to be covered and treated as much as one with significant financial resources; her illness and treatment should not have to damn us to financial prison.

Let me just say, I am sure this will bring out some less-than-friendly feelings in some...please don't share your negativity here.