Starring Scarlett

Chemo, Camp and Medical School

2013-05-11T17:59:00.001-07:00

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.

It's That Time Again

2013-04-30T21:04:00.001-07:00

Scarlett's MRI is tomorrow afternoon. We hope for no change - a stable brain with no tumor.

Thursday begins Round 5 of chemo. That means we are on the downhill slide of this routine - 4 months down, 4 to go. Going to the hospital two days in a row is a bummer for Chris (he's single-parenting it, since I have to be at work), but there is a benefit of getting MRI results the day after the scan - anything to reduce the anxious waiting.

Chemo is early this week because we leave Friday for Camp Okizu. This camp is a few hours away, so we will be on the road for much of the afternoon, but look forward to a great time with our camp friends.

It's a busy week, and we appreciate all the support we get from our friends here through the waiting, chemo and travel.

College Commercial

2013-04-24T21:21:00.001-07:00

There is a new commercial for Target's education donation program. In it, teenagers are getting their college acceptance letters (online, it seems - so much for the fat or skinny envelope, I guess.) Their parents, friends or siblings are around them as they proudly declare, "I got in!"

Will we have that? It seems like a lifetime away, but I can't help but think about what the future holds for Scarlett. We have met many parents, both at the camps we have the privilege of attending and online, who have fought similar battles with their own children. Now, for many, their children are not kids any more, but they aren't really adults, either - they can't hold a full-time job, won't attend college, may never be able to live away from their parents.

We're only in preschool, and I have learned enough thus far to know that I can't predict the future, but I ask myself ...Will Scarlett go to her prom? With a date? Will she able to live independently? College? A rewarding and fulfilling job that gives her some personal satisfaction and challenges her? Will people accept her with whatever deficits she may have and include her in "normal" society? Will she find a partner who loves her the way she deserves? Will she get married? Have a child? Will her life offer her the opportunity to make choices and decisions for herself?

Will she live to get a chance?

I try not to let the worries spiral out of control - it does no good. Every parent worries about their child's future, so I know I am not alone. Even typical kids have to grow up, and it's almost never the way their parents planned. I am more motivated than ever to find the right schools and supportive professionals who can help her make progress toward more of her goals. We have high hopes, and are devoted to surrounding Scarlett with as much love and support as it takes. But sometimes, I wonder what the next phases of this battle will bring for her, and if I am strong enough to get her through it.

Tonight, I'm thankful she is still so little. It helps to know that the scary future is so very far away. She's tucked into her mermaid quilt in footie pajamas with her doll and her pacifier, and that's enough for today.

Two and a Half

2013-04-15T21:13:00.000-07:00

I can hardly believe that it has been two and a half years since this little lady came into our lives. She is growing and blossoming every day. Here's a snapshot of Miss Scarlett these days...

Age: 2.5 years (30 months)
Weight: 25 lbs. 12 oz.
Clothes: 18-24 months
Shoes: 5
Bedtime: 8:00
Naps taken most days: 0
Likes: dolls, cars, pudding, necklaces, school, our dog, her papa Mike, throwing toys out of the bathtub
Dislikes: Yogurt, brushing her hair, wearing shoes
Newest tricks: walking with her walker!, climbing on the coffee table, balancing her feeding syringes on end, fake-blowing kisses
Signs known: want, more, eat, pacifier, momma, daddy, all done, happy, diaper...something new every week or so.
Surgeries: 14 (1 biopsy, 3 tumor resections, 1 cranial reconstruction, 5 shunt-related issues, 1 G-tube, 2 port catheters in, 1 out)
Months of chemo endured: 16 and counting
Next MRI: 2 weeks

So proud of this girl!

One Foot in Front of the Other

2013-04-09T22:02:00.002-07:00

Scarlett had physical therapy today. PT has been rough for several weeks - she is usually cranky, and has been very resistant to work on her new goal of walking.

Today, however, she had a different plan.

She is walking!! She is using the tiny therapy walker to get around all by herself (sorry it's a rough video - it was an action shot, and I was just glad that Chris remembered to video for me! That's her lovely therapist Kathy in the video). This has been MONTHS in progress, and we were really backing off on it because she was so resistant. She has had a loaner set of ankle-foot orthotics (AFOs) to help her get upright and build strength in her legs for standing. She hated them until today. Doctors and therapists have been looking at her feet, watching her stand, checking her reflexes, all to be sure there wasn't something we were missing. It turns out it was just Scarlett deciding when she was ready.

And it wasn't just at therapy. As soon as she was out of the car, she hiked her way up the driveway. Then she walked all over the backyard and the living room. She has already discovered how to turn the walker to face a different direction, and she can go across the threshold of the sliding door.

Serious face

Checking herself out in the glass door.


Forcing her walker and her feet right over the door threshold. Can't stop her!

She hasn't fallen, but we are expecting that to be the next lesson.

At the rate she's going, she'll be running marathons by her third birthday.

Easter, Spring Break and Round 4

2013-04-06T10:49:00.001-07:00

Spring Break is quickly coming to an end, and, like always, I am not ready to let it go! Since Scarlett's school and mine had the same break, we got to sleep in every day. We had very few plans, so we really got a break from our normally exhausting days.

Easter was quiet. We got dressed up, went to church with the family, and Scarlett got to do an egg hunt with her cousin and friends.

Her Easter basket had no candy, but did have necklaces and bracelets, which she loves to wear.

Cousin Caleb was checking her inventory.


Family pictures with a 2 year old just don't always go the way you plan...

Thursday was my birthday. Since it was my 30th (yikes!!), we toyed with making it a big celebration, but eventually decided to save for some fun in the summer. We did get a day out while Scarlett stayed with Grandma. We decided to visit the California Academy of Sciences in San Francisco, a museum we have not visited in a few years. We got to tour the indoor rainforest, see a show in the planetarium, and feel a simulated earthquake (somehow not as nerve-wracking as when we have felt the real thing.)

Golden Gate Park in spring!!

The indoor rainforest is very interesting, with butterflies and birds flying through.

The aquarium is always one of my favorites.

So...many...candles.

After the museum, we drove out to a movie theater we had been wanting to try. At Vine Cinema, they serve dinner and drinks while you watch the movie from a couch in the theater. We have always joked that we would love to start a movie theater for grown ups, with real food and drinks - turns out someone else had the same idea! the restaurant next door, which prepares the food for theater patrons, offered a wine tasting and happy hour, so we were

glad to have arrived early.

Watching construction of the new hospital while waiting for chemo.

On Friday, we went in for the first dose of chemo in Round 4. Everything went smoothly, and she is already perking up this morning. At the end of this month, we will be half way through the scheduled treatment. I am so happy that this chemo still has so little effect on her - no hair loss, no transfusions, no hospital stays, minimal drama. We are still cautious, as complications can arise at any time, but we are glad we chose a treatment plan that allows her to live the most normal (for her!) life she can.

Jack's Camp

2013-04-03T09:00:00.001-07:00

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!

2013-03-14T19:24:00.002-07:00

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"

2013-03-06T19:12:00.002-08:00

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

2013-03-03T21:25:00.001-08:00

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

2013-02-25T20:47:00.002-08:00

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

2013-02-14T20:42:00.000-08:00

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

2013-02-10T09:12:00.001-08:00

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.

Staying Busy

2013-01-28T20:52:00.001-08:00

Apologies for the long delay since my last post. Keeping up with our daily life has been as much as I can handle.

We went in for the second dose of chemo on Friday. It was a very long day in the hospital, followed by an additional appointment at the clinic across the street. Scarlett was basically perfect all day. She handled the chemo beautifully, stayed reasonably calm while trapped in a hospital bed for 6 hours, and then self-entertained while we waited 45 minutes for the GI doctor. She was only briefly sick that night, but she felt good enough to crawl straight out the doggie door for the first time. By Saturday morning, she was feeling great and has been since.

Scarlett with her necklace and her doll all dressed up for chemo.

Playing in the mirror while we wait for the doctor.

The best news of the day was from the much-delayed GI and nutritionist: don't change anything. Scarlett is growing perfectly (just crossing over 25 pounds), and they are 100% supportive of our homemade blended diet for her g-tube. We even taught the nutritionist a thing or two about how we feed Scarlett away from home using baby food pouches - a clean and easy solution to our busy schedule. It has been nearly a year since we last met with a nutritionist, so we were prepared for some suggestions. It is such a relief to leave a clinic with no changes to our routine - a very rare event!

Last week, we needed a distraction, so we went on an adventure. Since we all had a day off from school, we decided to visit the San Francisco Zoo. It was a gorgeous day, sunny and warm. After seeing all the animals, we headed across the street to the beach (yes - probably one of very few places you can see giraffes, gorillas and the Pacific Ocean within a few steps.) The sunshine was a welcome change for us all, and we thoroughly enjoyed it. I especially enjoyed playing with my new camera.

We have some difficult days here and there, letting the unknown creep in on us. It's hard to keep pushing past it, but I don't really have any choice. I can't wait to feel some kind of relief, some little sign that things really might be okay for more than a few days. Until then, just one foot in front of the other.

First Dose

2013-01-14T20:01:00.001-08:00

It seems our concerns were unfounded. Or, at least, premature. Scarlett has come handled the first doses of chemo like a champ. As if I should have expected differently!!

When I arrived at the hospital after work on Friday, Chris and Scarlett had just been put in a room. Scarlett tolerated her port access and lab draw, and was ready for chemo. It took a long while to get everything in order, so we spent a lot of time waiting with an impatient little girl, but she did as well as could be expected with toys, Yo Gabba Gabba on her iPad and snuggling. We were in the hospital for more than 7 hours, then sat in traffic for 90 minutes when it should have taken 20, so it's a miracle we got home with any sheds of sanity.

She was pre-medicated for nausea, just in case. Then she got both 90-minute infusions back to back. Around the time the chemo began, her nurse practitioner came in to check on us and discuss some of the last details. She stayed for nearly an hour, answering our questions, discussing the schedules and side effects we should expect, and looking at pictures of Scarlett (a favorite past time of us all!)

After talking with her, we have a much better idea of what we are looking at. The main talking points:

She will get three different drugs: Two chemotherapies - temador and irinotecan - and Avastin, which is intended to stop blood vessels from continuing to feed the tumor cells.
She is scheduled to get infusions of Avastin and irinotecan every other Friday. Temador will be given for the first 5 days of the cycle at home.
The most significant side effects we are watching for are vomiting and diarrhea - icky, but not unbearable. There are several other possibilities, including hair loss, fatigue, slow wound healing, and nose bleeds, to name a few. Eventually, we will have to closely watch her blood counts, but she should not (fingers crossed) get as low as in her first chemo, and we should be able to avoid blood transfusions.
She is currently scheduled for 8 months of this routine, with MRIs to monitor for tumor progression (or, we hope, lack thereof) every two months.

So far, she has handled it all so well. A little throwing up, and tonight a tiny nose bleed, and certainly some sleep and appetite disruption. It's hard to attribute things to chemo, or just to Scarlett. Did she stay up until 11 last night because she felt bad or because she's Scarlett and she does that sometimes? Is she avoiding eating because she does it regularly, or because she is genuinely not hungry and nauseated at the thought of it?

We'll never know, but it has made us a little hyper-vigilant. We set up our video baby monitor again, after several months of not using it, so that we can easily check on her without waking her with an open door. I frequently feel the need to check on her before bed, just to make sure everything is okay. We also turned her car seat around to face forward. I was not too keen on this, as I am well aware it is safer to be rear-facing as long as possible, and at nearly 25 pounds, she is far from the limit for rear-facing; however, she is two, so she passes the recommended age, and she spends so much time in the car (at least 2.5 hours a day for school and therapy) that it made us feel better knowing we could see her easily on long drives. She loves being able to see us, so at least she is happy.

We are taking it one day at a time, still watching her like hawks. If it could be like this for the next 8 months, we would be in good shape. There's no way I am going to bet on it, but at least so far, we are feeling confidant.

One down, 15 to go.

Round 1, Take 2

2013-01-10T21:13:00.000-08:00

The time has come. Scarlett begins chemo tomorrow. She will get two drugs via infusion (given by IV directly into her port), then one will be given at home via g-tube. We aren't 100% sure what it will be like. They tell us it won't be anything like what we dealt with before, but I am skeptical...I guess I can't imagine it being any better.

I have to work tomorrow. It's one of those days that I will have a really hard time focusing on my job, but will have to make it through. Luckily, it's Friday, and we hang a little looser in kindergarten on Friday! As soon as my students leave at noon, I will make my way to the hospital, where Chris will already be with Scarlett.

The infusions are each 90 minutes. That means that with prep time, fluids, pre-medication for nausea (it's expected to come on quickly this time), we will be there 4-5 hours. I have yet to figure out how we will entertain Scarlett in a hospital room, connected to tubes and wires, for so long. Usually we have the benefit (if you can call it that) of sedatives and pain killers. I doubt she will be incredibly cooperative, so we are packing a bag of entertainment to try to help.

Thankfully, she has been so happy all week. She absolutely loved getting to go back to school. She has played her heart out for the last few days, and is full of smiles.

Not me, though. I have been a mess for several days. I have been distracted, short-tempered and tired. I can hardly look at her without getting choked up. I have been frantically taking pictures and videos just in case we never get to see her as healthy as she is now. I know it is grim, pessimistic, sad...whatever you want to call it. But for me, it feels like the only chance I may have; we can't go back. As she giggles and scoots, I keep thinking how cruel it is to make her sick when she cannot understand why.

There is a point in a traumatic experience when you can't cry anymore. There is no point - it no longer provides the emotional release it used to. You know that it will not solve anything. It drains you of the last shreds of energy you have saved up for the next stage, and you just can't afford to lose that. I have cried everywhere over everything with everyone. I have cried in movies, in meetings and in the shower. I have cried more in the last two years than many people do over many decades. I've reached the point that I just get it over with when I'm ready, get it out of my system for a while, then move on. And there is no end in sight.

Scarlett never ceases to surprise me. She is 24.8 pounds and around 32 inches long. She is in the last few weeks of teething ever - finally! She learned to suck on lollipops this week, thanks to a school friend's birthday; this is a skill we have actually been practicing to help her swallowing. She has also learned to cruise furniture while standing - no surface is safe if it is below waist-high! She signs "want" when she wants more - whether its food, singing or playing. She sleeps through the night every few days, but generally likes to have a chit chat party around 3 am. And she rarely naps. There's just too much to see!

This is my beautiful, amazing girl last week. She put on quite a show for this shoot.

Thanks to Krista Lucas Photography for always being there when we want to capture a moment.

New Year

2013-01-03T23:44:00.000-08:00

Happy 2013 everyone! We're just getting back into the swing of things after the holidays. We had a nice visit with Chris' family, and then a fun little New Year's Eve of fondue and wine with friends and their 2.5 year old twins (making me appreciate more and more my one crawling kid!) Now I am back to thinking about school, getting my classroom ready once again (it needed some TLC after my distraction before the break); it's also time to get back to the business of Scarlett's new treatment.

Today, we had a follow-up appointment with her neurosurgeon. He says her incisions are healing well, and that she is safe to start chemo from his perspective. He will see her in a few weeks when the healing is further along - scabs should be falling off (lovely) and skin closing - to make sure she is still infection-free once she begins chemo.

He confirmed that the tumor pathology came back as recurrent glioblastoma. No ifs, and or buts. Her oncologist has yet to get a sample for second pathology, so there are still some oncology-specific questions awaiting answers, but we know what we are dealing with. However, he also showed us the post-operative MRI images to show us that the tumor, along with a margin of additional tissue for good measure, was completely removed.

Tomorrow, she will have another MRI at LPCH; it was scheduled months ago, and we all agreed it was not a bad idea to get some pictures of what is happening in her head before starting chemo. We hope to see no additional tumor growth from the last three weeks. It is the first time her new port will be accessed. I hope she is as tolerant of the numbing cream, plastic wrap and giant needle as she was before...

The plan is still to begin chemo on January 11. Scarlett and I will both begin school again on Monday, so it is back to the grind for us all. We will once again be trying to find a new normal, a way to get through this next phase with our sanity intact.

Two years ago this week, the first gigantic tumor was removed in two 12-hour surgeries that nearly killed Scarlett. She was only 11 weeks old...I know I posted these pictures a few weeks ago, but I keep going back to them. I remember so vividly what it was like in those first awful weeks...we have come so far.

Jan. 4 2011: the night before the first big surgery (she had already had a biopsy the week before). She couldn't hold her pacifier yet, but she would hold my finger as I held it for her. By this pint, she had lost the ability to lift her head, visually track, and was having seizures that we did not know about.

A few days after the first surgery...in a warmed newborn bed, so swollen, unable to move her eyes, left arm/leg, or breathe on her own; severe seizures, getting blood transfusions around the clock. The nurses in the PICU, who meticulously cared for her for the three weeks she was there, and every time since, recently told me how scary it was for them in those first days, that the doctors had prepared them for the worst. So grateful for their compassion and bravery.

Scarlett's Christmas

2012-12-28T09:02:00.000-08:00

Now that we have put away most of the wrapping paper and bows, here's how Miss Scarlett spent her Christmas...

We finished the last of our shopping on Sunday, amidst an incredible rain storm that caused flooding and chaos everywhere we went. However, Scarlett was a trooper through both Costco and the grocery store, and kept herself entertained with whatever she could reach from the cart.

Playing Christmas Jedis with grandma.

On Christmas Eve, we decided to take advantage of smaller crowds and visit a museum exhibit we have wanted to see (we bought the tickets months ago and only had another week left!). We headed to The Tech in San Jose, where they have a special Mythbusters exhibit, with props from the show and recreations of some of their most memorable experiments...including their giant Jaws shark.

That night, we had a big group over to eat way too much delicious food, do a White Elephant gift exchange and go to church. My job was dessert, and I made this awesome, easy cake that I found on Pinterest. It's Betty Crocker's Pumpkin Prailine Cake, and it was quite a success!

Christmas morning, we opened presents. Scarlett was not too sure what was going on, but once she was able to dig into a few new toys, she was all to happy to rip up the next one.

Her favorite gift from Santa was a new scooter bike, which she wants to ride as soon as she wakes up in the morning, and any time she sees it.

New magnets!!

Her stocking had Crayola Color Bath Drops that make the bathwater a little more fun. She is just transitioning to baths in the tub from the kitchen sink.

As usual, she was showered with wonderful gifts, including some new clothes and books. She's a very lucky girl to be loved by so many people.

Mommy and daddy didn't do so bad, either; I got a new camera that I am very excited to learn to use (and you, my dear readers, will benefit from my better pictures!) and Chris, who asked Santa for an "interesting experience," was treated to dinner at Opaque in San Francisco, where diners eat in complete and total darkness. All the servers are blind or visually impaired, and lead guests through the dark restaurant, where you have to rely on your other senses to enjoy your meal. We saw it on the Travel Channel many years ago, and wanted to try it out, especially now that we have a child who has some visual impairment. The food was great (Chris ordered all "mystery options," so he had to figure out what he had as he ate it), and we were happy to leave without having spilled our drinks at all.

It was a great holiday, and it's not over yet: we leave early tomorrow morning to visit Chris' mom near Lake Shasta. When we get back, we will have a quiet New Year's Eve at home, and then start preparing to get back to our real lives...Scarlett has doctor's appointments and MRI next week in preparation for her first chemo on Jan. 11.

The best gift: a box full of packing peanuts.

Merry Christmas!

2012-12-25T15:40:00.004-08:00

We hope everyone is having a wonderful Christmas! Scarlett is napping after digging into her stocking, eating a delicious brunch and then opening more presents! Mommy is exploring the manual for her brand new camera, and daddy is...well, I think he's asleep, too. Enjoy your family, eat something yummy, and stay warm!

Surgery #14

2012-12-20T20:20:00.000-08:00

Yep, that's right. Scarlett will go in for her 14th surgery tomorrow. But let me back up...

Monday we met with Neuro-oncology at LPCH. We are all dismayed that we have to have these discussions again, but we were glad to get to sit down with the doctors that know Scarlett so well and hear their thoughts.

They have not yet seen the pathology from the tumor removed, so their assumptions are preliminary based on the first look from the surgical pathologist. Everyone is expecting that this is the same tumor she had before. We asked how this new spot came on so slowly after so long; they said their guess is that one or two rogue cells were left behind in the first surgeries (as the surgeon always told us could happen, which is why she needed all the chemo in the first place). The super-speed duplication of those cells was staved off by the chemo, which ultimately may have changed the core biology of the tumor. Now that she has been off chemo for several months, those cells were able to begin to multiply, though at a much slower rate than what we saw in the original tumor.

The doctors are expecting to see somewhat good news from this pathology - that the tumor cells have been altered in a way that makes it much less destructive, and easier to control. Less likely would be an equally aggressive tumor as the original, which would be much more difficult to manage. Worst case scenario, which no one expects based on the behavior we have seen over the last few months' MRI, would be the pathology shows this to be an even more aggressive version that would be nearly impossible to eradicate; treatment would be of little or no use.

Somewhere in there, we found our hope. We are not done yet.

As we expected, they had a plan that was vastly different from what we were told at CHO. They feel that there are basically 3 options available.

Option 1 (LPCH's choice) is to begin a new chemo regimen. It would include all new drugs from what she had before, more similar to what is given to adults with this same tumor. It would be much less intense than what she did before - no (or very few) hospital stays, no blood transfusions, much less severe side effects. They estimate about 10 months of infusions every 2 weeks. She would still be able to attend school as long as she felt up to it, and could continue therapy and most all of her normal routines.

Option 2 (CHO's choice) is high dose chemo with autologous stem cell transplant. This plan would have her in the hospital for several weeks as she got a lower dose chemo to prepare her body, then had stem cells retrieved from her bone marrow. Then, she would be given an incredibly high dose of chemo - I saw it compared to getting six month's worth in a single dose. That drug would completely erase her immune system, as well her hair, digestive system, could damage her skin, heart, kidneys, liver, and would require several blood and platelet transfusions....and hopefully kill the cancer cells. Once she began to recover from the chemo, the stem cells would be given back to repopulate her now-erased immune system with her own cells.

Because she would be so dangerously weakened, she would be in a specially-filtered hospital unit, protected from all possible germs. Depending on how long it took for her to recover, she could be there for weeks or months. She would not be able to continue at school or therapy. Further developmental delays could present. The risk of death from the sheer toxicity of the chemo is high.

The final plan, which neither hospital prefers, is proton radiation to the tumor bed. This would be done at a hospital that offers proton to children...in Boston, most likely (quite a ways from our home in the Bay Area). Proton radiation is a highly-targeted to be as minimally damaging to surrounding tissue, but some radiation scatter cannot be avoided. Particularly for Scarlett. this presents a danger based on the location of her tumor, which is very near some of the most vital parts of the brain (as if there are any unessential parts!) She could sustain some even further delays in cognition and learning potential, and the long-term effects are still widely unknown. It is generally considered a non-option (at least to our doctors at both hospitals, and many I have read/spoken with) to radiate a child under 3 in most circumstances because of the damage it causes to the still-developing brain.

We listened, asked tons of questions, and talked through what the ramifications of each decision. By biggest concern is no longer what we do now, but what options we have down the road - I want a plan A, a B and a C so I know that there are still roads to be taken. There were several very compelling issues, and we tried to be as objective as we could.

There was one statistic we could not ignore: the survival rate for children with recurrence with all these treatments is around 20%. We have to hang on to the hope that Scarlett is the one child in five who will pull this off.

With no decisive difference in survival rate, we decided that we want to impact her daily life as little as possible; she deserves the absolute best life she can have, and the hospital - no matter which one - does not offer that. So, we have decided to begin the less-intense chemo plan at LPCH with the same doctors who have been overseeing her care for the last two years. It is immensely helpful to us to stay with the team we have trusted all this time; seeing their interactions with Scarlett on Monday only cemented that feeling for me. They laugh and smile with her, tickle and play peek-a-boo and know how awesomely wonderful she is doing right now; they have celebrated with us, and now are digging their heels in along with us.

Her new chemo will begin sometime during the second week of January (she is already on the schedule to regularly have appointments on Fridays so that it does not impact her school schedule.) This gives us a few weeks to get mentally prepared for more chemo, even if it is not going to be as bad as before.

Now for that surgery: she needs a new port placed before she can begin chemo. Ideally, her head would have at three weeks to heal before chemo, and a port would have two...which means it needs to be in ASAP. With the holidays upon us, the schedule for "elective" surgeries like ports (not an emergency, but necessary) is incredibly limited - in fact, so limited that tomorrow is the only option. She is not even on the surgical schedule, so Chris and Scarlett will essentially be on stand-by at the hospital early tomorrow morning waiting for an available surgeon and operating room.

Crazy as it seems, surgeries like port placement just doesn't worry me that much. The idea that she needs one is upsetting - we just got rid of the old one! - but I'd rather she have a port than need IVs in her arms and legs. I have to be at work tomorrow, having a holiday cookie-decorating party with my kindergarten class while Scarlett is (hopefully) having surgery. The hardest part for Scarlett is that she will not be able to take a bath for a few days - she just got her first real bath after the last surgery.

I can't say we are excited, or happy, or frankly, even incredibly optimistic. There is still so much unknown, and until we know more, we will just get through each day. We are calm, and we are okay for now. We see this amazing little girl growing and changing before our eyes, and we are ready to fight for her. Again.

And that amazing girl is where I want to end - it's been a while since I have given her stats. Scarlett is now 26 months old. She is 24 pounds. She outgrowing 18 month-sized clothes and size 4 shoes. She crawls full speed in every direction, and get from her back to her stomach to kneeling to sitting to standing with no problem. She can stand up at a moments notice. This week, her teachers were thrilled to report that she was clearly signing "more" during snack time; she started do it at home, too. She seems to know what "gentle" and "no" mean now, too. She has started cruising the furniture while standing. She laughs hysterically when we eat anything from her hand, and when we tickle her, when we blow raspberries on her tummy and ... well, she laughs all the time. She is determined to play in the toilet - not particularly fun for us, but blissfully normal behavior for a kid.

Early Days

2012-12-17T06:00:00.000-08:00

For those who have not been with us since the beginning, here are some of the posts and pictures from two years ago.

Discovery

2010

Whirlwind

A New Phrase

Dec. 17, 2010: First CT, when we thought it was a big misunderstanding. We laughed as we took this picture with Chris' phone.

Dec. 24, 2010: The day after we were sent home to wait for a call from hospice.

Dec. 27: A few days before going in to have first tumor removed.

Jan. 3, 2011: Two days before surgery.

Jan. 4, 2011: The night before the first big surgery.

Jan. 7, 2011: Touch and go after the first surgery.

Jan. 23, 2011: Waiting to go home after nearly a month in the hospital.

Tumor-versary

2012-12-16T14:24:00.001-08:00

Tomorrow we will walk into Lucile Packard Children's Hospital for what feels like the 500th time. We will smile to the valet who recognizes us, wait patiently as others try to figure out the security badge requirements (though we just slide our IDs, and our badges print out); we'll peek in on the Bass Center, where all the kids receiving chemo are safely sequestered behind heavy doors, and walk into the oncology waiting room, where we have spent hours waiting, chatting with the office staff. It's a familiar, comfortable and reliable place for us now. But it was not always that way.

Two years ago tomorrow, we did this for the very first time. We drove into the parking lot, jumping out of the car before my mom had a chance to park. It was dark, and the hospital was lined with lights, including the large animal topiaries that sit out front. We ran into the entrance, soaked from the rain, breathlessly asking the security guard where we would find our daughter, who was brought in by ambulance. The signs, filled with unfamiliar abbreviations like NICU, PICU, PACU, Hem/Onc, led us to her. We were overwhelmed, nervous and downright scared.

That night, we were shown, for the first time, the massive tumor that was killing our child. The first sight of it was on a neurosugery resident's iPhone, accompanied by the now-infamous "impressive". That night, Scarlett had her first CT scan, her first MRI, her first IV, her first anesthesia and her first night in a PICU. Looking back, I could never have imagined how routine those things would become.

That night, Chris and I were also accused of child abuse. As far as we have come, I can still never shake the horror of being suspected of something so heinous. The doctor who reported us and the social worker who interviewed us were just doing their jobs - they were not skilled at reading CTs, and when they saw what they thought was bleeding, they reported it, just as I would as a teacher if I had a student who came in injured. Nevertheless, I wish that the system could have been flexible enough to avoid the many phone calls and the home visit we had to endure later that week.

Over the next few days, we were told very plainly that our daughter was going to die. We were told exactly how it would happen, and what we would see along the way. We were given a time frame of a few weeks, maybe a few months. There was absolutely no hope.

We know now that there was a chance. Scarlett was always meant to be much more than a statistic.

Since then, we have changed. We have learned so much, both encouraging and harrowing. We know the signs of increased intracranial pressure. We know how to give injections at home, how to handle chemo without exposing ourselves and how to identify the need for blood transfusions. I can watch someone vomit without even blinking an eye, and clean it up, too (this particular skill has already been tested by my kindergarteners). We have learned that we can handle an inordinate amount of stress and still laugh together. We know each others' strengths, our breaking points and how to rely on each other in a way we never had in the first 9 years of our relationship.

When we walk into that hospital tomorrow, I will go with hope. I will go knowing that she has overcome so much, and continues to amaze us every day. I will walk in with confidence in the doctors who have worked so hard to save her life, and faith that they will continue to fight for her just as we have. I go there with all of the experience we have gained in the last two years, both of the good and the bad, and knowing that as hard as it will be, we will make it through. We have done it once; we can do it again.

Recovery

2012-12-14T21:44:00.002-08:00

Miss Scarlett is home again. She was completely stable for the last two days, has been off morphine for more than 24 hours, and is tolerating meals. The PICU and neurosurgery staff felt that there was nothing they were offering that we could not handle at home (or get to the hospital in time to handle). Since we are pretty experienced at handling neurosurgical recovery at this point, they don't hold her inpatient for the sake of observation. They trust us. So, they packed us up with some at-home pain medication, and sent us on our way.

Brain surgery to home in less than 48 hours. Not too shabby. She is still very drowsy, and has yet to tolerate being put down, but no one here is arguing with her. Hopefully, we'll be able to downgrade her to the regular Tylenol tomorrow, and then she will be back to her trouble-making self in just a few days.

We will be taking it easy at home for the weekend. We never expected to be home this weekend, so we have no plans, no obligations.

Last night, and again this morning, the neuro-oncology team from Children's Oakland came to speak with us, as we requested. One of the doctors we met at the Pablove conference last month consults in Oakland 2 days a month, and that just happened to be yesterday and today. He has very strong feelings on what the next steps would be, so we asked some preliminary questions, and have that information to consider.

Monday we meet with her primary Neuro-oncology team at Stanford. I hand-delivered discs of her latest MRIs to them in Palo Alto this morning, so they will discuss her in tumor board, and then meet with us directly after. I am not sure what their plan of attack will include yet, but I have a feeling it is going to look very different than the option already on the table. I am having a hard time considering anything that would eliminate the team who we have relied on so heavily for the last two years. They know Scarlett better than anyone outside of Chris and me, and have been with us through hell and back. I can't imagine going forward without them.

I am not sure how we are supposed to make a decision like this. I am sure we will find something that convinces us in one way or another, but it's all too big to conceive of right now. We are currently scouring the internet for articles, journals or anecdotes of infants with recurrent high grade glioma. Luckily, I guess, there isn't too much to sift through that we haven't already seen or heard about.

Everyone agrees on a few things. They all want us to "enjoy" our Christmas, and not try to make too many decisions before then. But the flip side of that, which they also agree on, is that we don't have long to ponder; if the tumor that was removed continues the observed growth pattern since September, it will basically double every 6 weeks or so. It would be ideal to start treatment before any significant growth occurs (existing tumor is the main factor in success rates; less tumor to stop gives a decidedly better outcome).

So, we have about 3 weeks. By the first week of January, she will be in some new treatment plan that will send our entire world into a tailspin yet again.

Starting Over

2012-12-13T14:12:00.002-08:00

We're settling in. Scarlett is recovering well. She is still on round-the-clock morphine, but we are working on weaning her to Tylenol. Last night, she got pretty feisty, kicking her catheter line out several times (requiring full bed changes), pulling off the bandages on her head, and eventually wiggling free from the arterial IV line, the one that took over an hour with three anesthesiologists to place in surgery yesterday (the anesthesiologist later came to tell me it was her most difficult IV placement. Ever.) She finally settled down and I fell asleep around 11, to then be woken at 2:00am to be moved to a different bed spot in the PICU. I groggily carried my bedding across the unit to the quieter, more spacious side, and settled back in on the squeaky sleep chair. Around 5, they decided to draw labs, but they couldn't get any blood through the remaining IVs, so I awoke to Scarlett screaming as they pricked her toe and heel to get enough. At 7, rounds began, so I was on deck to talk with doctors and get the plan for the day.

This morning, Scarlett had a follow up MRI to make sure every trace of tumor was removed. We haven't seen the surgeon yet, but we heard he came through the PICU while we were out and told the nurse it looks good.

We are in a daze. As much as we thought we were prepared for new tumor growth, I am finding myself at a loss for clear thoughts. I am sure the fatigue is partially responsible, but I can hardly keep my mind focused on one thing. We spoke with the neuro-oncology nurse practitioner who has been with us from the beginning. She is in communication with the surgeon, and they are already working on getting scans sent over to have on hand. She wanted to check in on us, and to let us know that there are still many options. Hearing the details, though, hit home.

She suggested we push to have a port placed back in Scarlett's chest if she continues to have IV problems. If we're going to need it anyway, we might as well save her pincushion experience and do it while she is already in the hospital. And then she stopped short to say she was assuming we wanted to proceed with treatment.

Is there a choice? I know there is, though I can't imagine choosing to give in at this stage. Yes, we will proceed with treatment.

She did not mention any specifics, but that we will have to wait at least 2-3 weeks for Scarlett to heal from this latest surgery before proceeding. She asked about my work schedule, when my vacation begins and when we can come to Palo Alto to talk further. She said we will have to look at balancing aggressive treatment with quality of life.

Quality of life.

How did we get back to this place? How is this happening again? I was so sure, so convinced that we had left these questions far behind. She has been doing so incredibly well. Two years ago (almost exactly, as it happens) we were faced with these questions, and there was no time to decide. Plans were made faster than we could blink, and it made things easier to not have to think about it. Now, we know so much more...we know the challenges of treating Scarlett, the challenges of bouncing between hospitals, the risks of infection, of further developmental delays and of permanent damage from treatments that may only give her a short time before we are right back where we are now.

I know too much. I cannot forget or ignore what I have seen, read, and learned over the last two years. I have seen countless other families be faced with watching their children, their babies, die in their arms. Keegan, Jessie, Bree, Talon, Zac...all gone this year, and they are just a few. I have read about their last vacations, their last days and the emptiness of the days, weeks and years after. I can hardly swallow, hardly breathe when I think about facing that with Scarlett. Not after everything we have been through already. The image of her slowly fading before my eyes continues to flash through my mind, and I can't help but cry.

This is not fair. Not for anyone who had done it before us, not for us, not for me. Not for Scarlett.

Our plan is to meet Monday, pending Scarlett has been discharged. Hope is not lost - there are options. We will learn more about them and make some decisions soon. Scarlett's case will be discussed at tumor board at two different hospitals, including doctors consulting from even more hospitals. I have already asked for any information available from the Pediatric Brain Tumor parent group, the biggest network of parents I have found for learning about the most recent research, treatments and approaches from around the world.

My greatest fear is that this is the beginning of the end. It's a premature thought, and I am not giving up. But I can't deny what I have seen.

Surgery #13

2012-12-12T17:16:00.002-08:00

Scarlett is out of surgery, headed to the PICU for recovery. We just spoke with the surgeon. Here's what we know right now:

Getting an arterial IV line in her was very difficult, so it took an additional few hours.

The entire growth was removed, including some of the adjoining tissue that might harbor rogue cells.

The pathologist looked at a sample. The initial impression is that we are again looking at glioblastoma multiforme (GBM). Official diagnosis results will come in the next few days, but it is definitely some kind of tumor. I have some particularly colorful words I could add here, but I'll keep it PG-rated for now.

While they had her opened up, they used a mesh to help repair some of the unhealed soft spots on her skull. This will hopefully help them heal stronger.

They expect her to be ready to go home Sunday or Monday.

Her doctors at LPCH at Stanford are being informed, as well as samples sent soon to start developing their plan. Her case will also be presented this Friday to a doctor we met at the Pablove conference in LA last month, who consults at Children's Oakland. Basically, everyone is on it, and we should have a plan (or likely, a choice of plans...) soon.

We are pretty tired after waking up at 4:30am and being anxious all day. I will be staying the night in the PICU tonight while Chris goes home to sleep. I am hoping we can keep her more comfortable with pain medication this time.

Thanks for checking in on us. I'll continue to update as we learn more about this new phase.