A Fussy Week

Not much has happened lately, but I always feel bad if I don't write for more than a week!

Scarlett has had a less-than-stellar week.  She is really fussy, really agitated and irritable.  She is taking extra naps because she exhausts herself with tantrums.  She wants to be held a lot.  This is all completely reasonable for just a typical kid, never mind one who is on chemo and teething, but it is not really like her.  We never know which of the many reasons is causing her frustration.

Any time there is a change in her behavior like this, it puts me on high alert.  I check for fevers every few hours, I check her eye responsiveness and check on her while she sleeps.  I never hesitate to call the doctors if I feel something is wrong, but I have gotten pretty good at telling what is doctor-worthy.  So far, nothing they can do anything about...but I'm watching.

She has started doing the strangest thing - grinding her teeth.  It is the WORST sound ever, like nails on a chalkboard, and I cannot figure out how to stop it.  I have tried to distract her, blow on her face, say "No!", give her more to chew on, but nothing is working.  Her NP heard it the last two weeks, and she is concerned.  Her Friday teacher heard it, and said not to worry.  I looked it up, and apparently some babies just grind their new teeth (she has new molars coming in).  Has anyone else dealt with this? It is so ANNOYING, and I am worried about her brand new teeth!

We were also introduced to a new concern her doctors/teachers/therapists have: visual processing, or how her brain interprets what she sees.  We know her eyes and optic nerves are functioning properly, but we are not sure that her brain is really making sense of what she sees.  She's too young to test, really, but inquiries are already in process to see if we can figure out what is going on.  However, since three different people brought it up this week, I am guessing we will hear more about it soon.

All in a typical week around here!  I am still not dealing with things as well as I could be, so its been a little harder than normal.

BUT, a teaser: I am working on a special project (or maybe a few...) for Scarlett's Valentine's Day surgery...fun!

Round Twelve...Nearing the End

Tonight, we begin round 12 of chemo, the last month.  In just 28 days, Scarlett will be finished with cancer treatment.  I can hardly believe we have made it this far, and am in complete disbelief that it will be OVER so soon.  I can only hope we never, ever have to go back to this.

We survived the week of eight appointments, but just barely, I think.  It was difficult, to be sure, and there were a few moments in the last 6 days that I really just lost it.  I know better than to schedule so much for myself in such a short time period, but I'll be more careful in the future to avoid it.  Despite the ridiculous amount of driving and perpetually fussy baby (though, the FOUR new molars coming in don't help!!), I ended the week feeling good because I got so much done, despite the efforts of many to make me crazy.  Here's some of what I dealt with (the good and bad):

GOOD:  Therapy.  In OT, Scarlett is showing great improvement in the way she uses her hands.  She can freely pass things across the midline (from hand to hand), lift her right hand above her head and her left to 90 degrees.  Her pincer grasp (pointer finger and thumb) is developing and she is banging things together.  In PT, we are moving into crawling skills.  She can hold herself on hands and knees for about 30 seconds, and rock back and forth if we are holding her legs from splaying out.  She can't go forward on hands and knees, but she is learning to scoot on her tummy if we give her something to kick off from.  Overall, she's making good progress and gaining more and more skills each week.

BAD:  Insurance.  I dealt with more insurance garbage this week than I have in months, and most of it was completely unexpected.  We can't get her formula sent out because it hasn't been approved by the state insurance.  We had to have her chemo sent from the mail pharmacy rather than pick up from the hospital pharmacy (like we have EVERYTHING else) because they don't cover a few drugs, including this one, at that pharmacy.  And, the big one, which left me in a puddle of tears in the audiologists office (for which I have profusely apologized to her for): somewhere along the line, back in the summer when she was in the hospital weekly for transfusions and just plain sick, the claim for her hearing aids did not get processed through our old insurance.  I have a sneaking suspicion this is my fault, but I honestly though it was taken care of, and we hadn't heard anything more since July.  Basically, they never got paid for, so now the hospital would like us to pay the $4200 they have not yet received.  We will go back to the insurance company to deal with this, but my initial reaction was blubbering.  Somehow, my rational mind is rarely present when dealing with large bills.

GOOD: School.  We came to a decision about Scarlett's schooling, at least until she is three.  She will continue to attend her current school, CEID in Berkeley, until her interventions are reassessed by the school district when she is three.  We toured the California School for the Deaf (CSD) this week, and while it is a great place for many students (it is a public school that serves most of the deaf students from toddlers to high school in northern California), it is not the right place for Scarlett right now.  CSD uses a bilingual approach with American Sign Language and English; most instruction is done in ASL, which is not compatible with spoken English, meaning Scarlett would be in a nearly silent environment most of the time.  CEID uses a variant on ASL called Signed Exact English, so that each spoken word gets a sign, allowing a child with some hearing (like Scarlett) to learn English both visually and auditorily.  Her audiologist feels this is the best option, but the commute was intimidating (about an hour each way - CSD is 10 minutes away).  We hemmed and hawed over this for months, especially since she will begin going to school there 4 days-a-week in the Fall.  But, decision is made, and we all feel good about it.

GOOD, sorta: G-Tube.  Scarlett will have a G-Tube placed on February 14th...Valentine's Day.  For those of you have been following us closely, Valentine's Day has been intense for us for the last two years - V-Day 2010, I learned I was (surprise!) pregnant; 2011, Scarlett began her first chemo that day.  So, in traditional Scarlett fashion, I will spend Valentine's Day in surgical recovery with my sweet girl.   Despite the unfortunate date, we are glad to the g-tube in so that the NG tube can come off of her face after 11 months!  Fingers crossed for fun on 2/14/2013!

UNDECIDED: Neurosurgery.  We met with Scarlett's incredible, but very intense, neurosurgeon.  He had not seen her in about 6 months, and there have been some significant changes to her MRI that he needed to see for future planning.  The good part is that we have a plan; Scarlett will have a CT scan in April, then go in for a new shunt and reconstructive surgery in early May.  This is a few months sooner that we originally planned, but her blood counts have been pretty stable for a few months, so her oncologist decided we could push it up a little.  The surgeon would have taken her in to surgery right then and there, I think, if we had let him.  We met the plastic surgeon who will participate in the surgery, as well as the ever-evolving team that surround the neurosurgeon; everyone is great, loves Scarlett, and are very pleased with her progress.  The not so great part was hearing him describe the surgery.  I won't go into too much detail (yet), but suffice it to say that he is not happy.  It will be difficult to fix her head shape, and this procedure (probably over a few different surgical days) will not be the end.  He expects this to set the foundation for proper growth, with follow-up surgery likely necessary when she is 4-5, and then again when she is done growing. 

This weekend, Scarlett and I are recovering.  The house is a mess, we have no groceries and the laundry is everywhere.  Chris has to work every weekend (a trade in for his work-from-home days with his new job, which is going great, by the way!), so we are just going to get back to baseline energy levels.  Next week, we are back on our regular 5-a-week schedule, so it should be more manageable, with hopefully less drama. 

8 is More Than Enough!

This week is going to be busy.  We have 8 appointments.  EIGHT!  I am not sure how it happened, but it seems everything got scheduled in the same week!  Physical therapy, occupational therapy, audiology, neurosurgeon, neuro-oncology, signing class (one at school, one at home) and a tour of a second school option.  I will drive to Palo Alto twice, Oakland and Berkeley this week, on top of the local spots, for a total of about 200 miles solely for Scarlett's care.  Holy gas bill, batman!

15 Months

Miss Scarlett is now 15 months old!  She weights 20 pounds, 14 oz. and is about 28.5 inches tall, just beginning to outgrow some of her 12 month size clothes.  She has 6 teeth on top and 4 on the bottom, with the first two lower molars working their way through.  Her hair is about and inch and a half long!  She laughs and chatters all day long, with a lot of "dadadadadadadada" especially.  She likes to play games like peek-a-boo; she's particularly fond of me pretending to sleep, then "waking up".  She still sleeps about 12 hours at night, but only takes one good nap each day.

Bed Head!

Snuggling with her doggie brother

This month brought along a big event:  she rolls over!  We have been working on rolling for nearly a year, once her incisions were healed enough, and she has finally, finally, finally decided it was time to get moving.  It's still a rare event, but it has been witnessed by multiple people, and I got it on video, so it's official!  Now, on to crawling...

It has been one year since a massive tumor was removed from Scarlett's brain.  Tomorrow night, we complete the 11th round of chemotherapy, and get a week long break before the very last round!

Grief

This is something I have been meaning to write about for a while, but I haven't been able to get my words around it clearly.  It is such a deep chasm that I often lose myself in it as I try to explain it.  It catches me almost daily, just little things, sometimes much bigger, but often the most unsuspecting thing brings it on.

We began the battle for Scarlett's life a year ago, and it has been difficult, to say the least.  One year later, I am still grieving.  I wake up every day to her beautiful smile and her sweet little voice, but I am still grieving inside.  It might be difficult for others to understand, but it is something very real for me. 

Sometime early in this journey, during one of the many long and arduous hospital stays, our hospital social worker brought up the idea of our grieving.  It didn't sound right - we usually think of grieving death, and Scarlett was very much still with us.  But then she explained - we were grieving the loss of the child we had dreamed of.  The one we had hoped for and imagined all those years before we had her, while I was pregnant and for those first two unblemished months.  We had to grieve the loss of that imaginary child, of the dreams we held for that child.

I know it sounds like we had to give up on her, but it was quite the opposite.  We had to give up the illusion and accept her, with all the scars, delays and complications to fully appreciate the triumphs and celebrate her.  We had to let go of the fantasy child so that we could fully embrace the one in front of us.  Having a child diagnosed with any kind of medical condition or special needs is difficult, and while it does not compare to the death of a child, it still represents a deep loss. While the child is still present to be held, every day is a reminder of an unknown future, continued challenges and pain, and that can bring new waves of grief.

Unfortunately, I have been witness to a lot of grieving lately, and I have seen a whole range of experiences and ways that people handle it.  Some grieve very publicly, and want others to join in to help ease the pain; others want to hide and quietly process on their own.  I have done both, though I know it seems like this blog has been an all-access pass to our journey.  I am working my way through the infamous stages of grief, and while I can pinpoint some events in each category, I don't find that they come in a definitive order.

Denial was a short-lived stage, as we were put face-to-face with the tumor that was overtaking her brain on the first day; I remember a fleeting thought of "Maybe they have the wrong scans!" until I blinked again and could recognizer Scarlett's profile, with her tiny nose and round chin, in the MRI image.  

Anger comes and goes.  Unfortunately, there is no person or thing to be angry at, so it had been a fruitless emotion.  The anger comes in more in the lack of options, the lack of information and the overwhelming number of kids I have met who are also battling this. 

Doctors don't bargain much, but I tried my best with God.  We asked Him to make this stop, to take this pain away from our innocent child.  While some may argue that God brought us to the surgeon who removed the tumor, I have a hard time giving Him credit for that.  Ultimately, I don't feel I had much to bargain with.

Depression ebbs and flows, like the tides.  There are good days, where I feel like she is making such great progress and that all of this will be a distant memory that we will tell her about.  Other days it sits around me like a thick, soupy fog that I can't see my way through.  Luckily, I am pretty good at identifying the bad days and finding ways to combat it, and I almost always have someone or something that can distract me.

We are, and may always be, learning acceptance.  We accept that Scarlett will not fit any kind of development schedule or curve.  We accept that she will never hear perfectly.  We accept that Scarlett will always need some medical interventions, monitoring and even further treatment down the road.  I am learning to accept the way people look at her, like they are sad for her, and just a little scared of what might happen if she sneezes too hard.  

I will, however, never be able to accept that this happened to her.  She did not deserve it.  Honestly, I don't think I did either.  Nevertheless, I am learning to accept that it was always going to be this way.  She was always going to be our daughter, was always going to be a Scarlett, and was always going to be born with brain cancer.  There was never a "before", only Scarlett the way she was meant to be.

Resolutions

It is January, and that means resolutions.  I know almost no one sticks to them, and I am no exception.  Every year, I say to myself, "This is the year!" and decide I will make some kind of change.  And I don't.  However, I want this year to be different.

For the last year, I have been completely consumed with medical information, hospitals, doctors, therapy, and medicine.  I have not taken great care of myself, and it is very clear to me that I can no longer afford to do this.  For the last few months, I have been feeling less and less comfortable in my own skin.  The months of sitting in hospitals and eating my stress have taken their toll: I weigh more now than I did at 9 months pregnant!  It is definitely not something I want to continue, so I am trying to put a stop to it now.  I am fighting every day to give Scarlett a better life, and I want to enjoy it with her.  I want to be an active participant in her childhood, and not regret that I couldn't do things with her like I wanted to.

I am not good at making big changes; I am really a routine-bound person.  Taking this into consideration, I have been trying to make a little tweak here or there that I can live with for a few weeks, then add something else.  For instance, I have cut out a lot of coffee from my diet.  The coffee itself isn't so bad, but the way I drink my coffee (basically caffeinated hot chocolate!) wasn't doing me any favors.  Since essentially everyone in my family is vegetarian or vegan now, I can pretty easily cut most of the meat from my diet - not weight-affecting in itself, but a path to more fruits and veggies.  I am also drinking a lot more water (or tea) during the day.

I am also determined to add more activity into my day.  When I was teaching, I inevitably got more walking in just chasing kids.  Now, I have to create opportunities to move.  We have had a Wii for a few years, but it has been mostly dormant for a while.  I got a few new games to spice it up, and I am making time for 30-minute sessions right now.  I am also going to try to take Scarlett and Cosmo on more walks, but I haven't been able to make this happen yet (luckily, we have had the most un-winterly Winter so far in the Bay Area - about 60 degrees every day).

This is not a groundbreaking plan, I know.  I am just trying to make a change that I can live with that makes me feel better.  I am posting about it here for a little accountability...I went public now, so other people know what I am working toward!  If I have any major successes (or failures, even) I will try to keep you updated.

New Beginning

Our new year has started out with a big new change:  Chris has begun a new job!  He is now working at a large tech company on their global marketing team.  I can't really explain his new job - I don't really get it yet - but he is doing marketing stuff and works from home!  It's only part-time right now, so he is still at Starbucks part time, where we will maintain some benefits (including free coffee, of course!)  He picked up his brand new work laptop this week, and is really excited to begin a new project after a little more than two years of under-employment.  It's a big sigh of relief around here, for sure.

This week, we are back on our regular schedule for therapy after two weeks of vacation for the holidays.  It was nice to see all of Scarlett's lovely therapists again, refreshed after their breaks, but going back to driving all over the place has been less than wonderful.  Luckily, the little girl is very good in the car and has been generally pleasant for her appointments...except the ophthalmologist!  She threw quite a tantrum while having her eyes checked - so much so, that it took me, the medical assistant and the doctor to hold her down!  She still shows that feisty attitude when she needs to!  Luckily, the doctor got a good look at her optic nerves and says everything still looks good.

Every few days we have another anniversary of the events of last year.  This week, is it surgery.  On January 5, 2011, we waited more than 12 hours while the majority of the tumor was removed for Scarlett's brain.  It was such a long, arduous day, and not the first or last one that we thought we were going to lose our baby.  To see her a year out from that point, and how well she is doing...it is simply a miracle.  We will see the neurosurgeon that saved her life in a few weeks to begin planning the big surgeries for this year.

As I have been tying up some loose ends from last year, I added a big event to our calendar:  our next blood drive!  It's scheduled for Oct. 20, 2012.  It's far off still, but I am already making plans to make it fantastic!