Jack's Camp

Last week, we went to the first family camp of the year.  We plan to attend three different weekends of camp this year, hosted by two camps for families dealing with brain tumors.  The first was Jack's Camp, hosted by a support group called We Can.  The camp site, Camp Arroyo, is run by the YMCA and The Taylor Family Foundation, and hosts camps for kids with special needs through the year.  The camp founder, Elaine Taylor, had a nephew named Jack with a brain tumor, so she decided to invite a group to use their camp in order to support the kids and families in the area.

The view from the dining hall patio

Past the pool, over the whole Livermore Valley

 

Scarlett exploring our cabin.

Watching the campfire

 The camp is beautiful. It is in Livermore, about 20 minutes from us.  It overlooks the hills, valleys and vineyards in the area.  There are wild turkeys and deer wandering through the camp, and there is plenty of space for kids to run around.  Campers stay in cabins with solar-powered radiant-heated floors, huge handicapped-accessible tile bathrooms and bunkbeds, and eat in the big dining hall where healthy food is prepared for us.

 

Meeting the chickens at the all-organic camp garden

Adventures for mommy and daddy, too!  We got to do climbing and a zipline during one of the parent sessions.

During the weekend, the camp staff and volunteers take the kids, both patients and siblings, to play while parents share their stories and share information, resources and support.  Meeting other parents (and their kids) is an invaluable part of these camps.  There are many issues we are dealing with for Scarlett that only others with similar issues can understand.  And, since Scarlett is the youngest in the group, we get a lot more insight into the issues that kids who have been through similar treatments are facing as they get older.  

It is emotionally draining, but also gives us a new energy to find new resources and solutions to the problems that we are all struggling with.  The children we see now, including Scarlett, are part of a trailblazing group; they are some of the first to survive these tumors, and there is no structure to support them yet.  The treatments our kids are going through, and especially what was done 10-15 years ago, has life-long effects; very few of the kids are able to lead independent adult lives. It is up to parents like those we meet at camp, whose kids are becoming some of the first adult survivors of childhood brain cancer, to lay the groundwork for what we hope will continue to be a supportive community for kids who have undergone such drastic treatments.

In a few weeks, we will go to a different camp, and then in September, we will get to visit Jack's Camp again.  We feel very grateful that these camps offer these weekends to us - some of our only chances to get away - for minimal cost to us.  We look forward to them all year, and are so glad that camp season has arrived!

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.

"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.

Predicament

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 save...so 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.

Connecting

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. 

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.

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.