Silver Lining

Our clinic appointment was cancelled today; the doctors decided they already had everything needed, so we got a second day at home.  Since I did a little sale-cruising yesterday, and we are having some un-California May rain, I decided to stay home today.  We get admitted for more chemo tomorrow, the really nasty Vincristine-Cyclophosphomide-Carboplatin cocktail that leaves her so sick.  It's probably my last chance for the next week to have some time for myself.

One of the wonderful new tricks Scarlett has developed is a sleeping schedule.  She wakes up around 8, naps from about 11:30-3, another short nap in the evening, then goes to bed around 9 (she usually needs a feeding and diaper change in the night, but goes right back to sleep).  She is so much happier when she is awake, and I really think it has helped her recovery and development the last few weeks.  She is beginning to help hold her bottles, hold her head straight, put her pacifier back in her own mouth (only the Wubbanub - I LOVE these!), push off with her legs and babbles all the time.  She has also cut her second tooth.  It is such a relief to see these advancements!  I was beginning to forget that she wouldn't always be helpless.

One of the other things I noticed lately is how different she looks.  She has almost no hair, and what is left is straggly and thin.  She has no eyebrows or lashes.  

Her hair before surgery in January

No hair, no brows, no lashes.

I was prepared for this, but I barely even realized it had happened. 

In fact, despite all the other issues we have to deal with, I have been feeling lucky.  When we found out I was pregnant last year, there was no way we could manage me staying home for more than the basic maternity leave (up to 12 weeks unpaid, for those not familiar).  Even before D(diagnosis)-Day, I could hardly stomach the idea of leaving her in day care.  I am so lucky to have been able to stay with her all this time.  I am present for everything, for better or worse.  That's the little bit of silver lining I found in the rainclouds today.

Home

We made it home last night.  We have today off, then clinic tomorrow and re-admit on Wednesday!  Busy week, but for the first time since chemo began in February, we are on schedule!  As long as she can make it just two days without some new issue, we should finish the Induction phase as scheduled.  Hooray!

Adjustments

There are many changes afoot for our family.  Some are good, and some present challenges that I am not yet sure how to face.

Scarlett is almost done with the Induction phase of chemotherapy.  We have been told that the next phase, Consolidation, is a bit easier on her (chemo is better tolerated) and us (only a few days of hospitalization each month!)  After two months, we will move into Maintenance, which is all outpatient and oral chemo!  By the end of summer, she should not need to be hospitalized any more (just clinic visits for blood draws, check-ups, MRIs, hearing tests, etc..)

We are also arranging therapy to begin.  She currently qualifies for physical, occupational and speech (yes, even at 7.5 months) therapy, in addition to hearing intervention.  From what I can tell, this will be at least a few days a week, in addition to her regular appointments.  There are other activities, like swimming, that may be tough to fit in, but that I would love to get her started on that will benefit her development, too.

We made a big decision about my job:  I quit.  I have been on disability since I went on Maternity leave in September, and I was so lucky to have that hold us over through the school year, but I can't do that next year.  I can't be the teacher I want to be while I am worried about Scarlett's medicines or appointments; my students deserve more than that.  Plus, my current job is 45+ minutes from home with the daily traffic, and Scarlett can't exactly go to day care while on chemo.  However, I am considering a part-time teaching job closer to home (know anyone who wants to job share 1 or 2 days a week in Newark?).  If that doesn't work out, then I will look into tutoring or some other way to make ends meet and still be available for Scarlett. 

Giving up my job means a big change in insurance.  My insurance is very good, and has covered everything for Scarlett (including 100% of her hearing aids!!)  Chris' job at Starbucks offers insurance, but due to some paperwork error when she was born, Scarlett is not enrolled.  We have been asking around to make sure they can't deny coverage when we try to enroll her during open enrollment in August...she's a high risk for insurance.  Even then, it will be a different type of plan, one which does not cover nearly as much as our current plan.  We are beginning to plan how to make the most of my insurance (like refilling expensive prescriptions) before it runs out, and we have already talked to the hospital financial counselor about state insurance and Social Security for Scarlett if we have any problems in the transition.

These are huge issues that we have never really had to think about before; we have been lucky to always have jobs and insurance, but never really need much more than the basic coverage.  Scarlett needs anything but basic coverage! Now that we have her to worry about, we can't ever be without insurance or jobs that keep us afloat.  I want to be able to do everything she needs without worrying about how much it costs or how we will pay for it.  It's a lot of pressure, but we are trying to take it one step at a time.  I hope that it will all begin to work itself out soon.

The C Word

Scarlett's chemo ended late last night, and so far, she's doing great!  Now, just the long and arduous wait for her system to clear.  I am so glad that this is the last dose of this chemo; the next cycles do not include methotrexate.

I have been experimenting with how to talk to other people about Scarlett.  It is not an easy thing to explain why my baby's head is caved in, especially when they are completely unsuspecting.  I know I have no obligation to other people, but I feel that it is better for Scarlett if we are up front and open about whatever is going on, rather than trying to hide it or lie just because it is easier.  I never want her to feel like she has to hide or keep her head down when she goes out in public, and so I want to be an example to her.

When people see her, they react in a few ways. In the last few weeks,

• At the post office, the clerk at the desk saw her NG tube and asked, "So what does a kid do to get one of those?"
• At the grocery store, a lady asked nothing except "Will your baby be okay?"
• At Old Navy, a grandmother shopping for her granddaughter, who was the same size as Scarlett, asked what had happened, and then proceeded to cry in the store. 

I have been playing with ways to respond to these inquiries.  Will she be okay?  I wonder that myself.  How much do I share?  The easiest is to just say, "She's had some challenges, but she is doing well."  This skirts the issue and lets us move on.  It doesn't seem to satisfy curiosities, though.

By far, the most difficult thing to say, and what seems to be the hardest for people to hear, is "She has brain cancer."  Something about the c-word really upsets people.  Tumor does not evoke the same response.  Cancer has such a history, and is much more known.  When I say brain cancer, I can see people's faces cringe, their minds go directly to their grandmother/cousin/coworker/friend who has had cancer.  They do the "pity head tilt" (from Friends, anyone?) and offer to pray for us.

As soon as they react, I feel bad for ruining their day; nothing brings a gray cloud to the picnic like a baby with cancer.  I try to be upbeat, ease their worries...and then I find myself actually comforting them, wanting to relieve them of the burden of my child's life.  It's a huge task, and something I am just not really up to most of the time.  The c-word is hard for me to say.  It seems so final, so severe.  I don't like to think about her that way, either.  Just like the people we run into, I would like to imagine her just a little under the weather, not with cancer.

Chris and I have both felt this stress lately.  It is too much responsibility to try to comfort other people when they ask about her.  We just can't manage it right now.  He does a better job than I do of being honest and letting people deal with it how they will.  I am still working on how to comfortably face the world with her while not apologizing for how others feel about it.  Maybe it will be easier when she is older and can show people how well she is doing.  Until then, I am learning to be brave so that I can teach her.

Round 4

We are in for her fourth round of Methotrexate.  So far, everything is going well, though she won't start the actual chemo until late tonight.  Everyone is on edge about the shape of her skull, and the neurosurgery and neuro-oncology teams are both going to come by in the morning to see her and hopefully discuss with us the next steps.  Until then, she's happy.  Her little tooth has come all the way through the gums and she is perfectly content to chew on her fingers.

Audiology

Today we had a surprise appointment with audiology.  Not sure when it was scheduled or by whom, but we got the reminder call and went.

We met Scarlett's new primary audiologist and discussed the exact parameters of her hearing loss, as well as how to proceed with hearing aids.  She explained in more detail the cause of the hearing loss, how it is measured and what changes we might expect.  Basically, the chemo kills hair cells, including the cochlear hairs that conduct sound in the inner ear.  Some hair grows back after chemo, but not quite the same; it is not likely that she will regain much hearing even now that the ototoxic chemo has been stopped.  In addition, the shunt infection, similar to meningitis, as well as the antibiotics used to fight that infection, were likely damaging to other areas of the ear, so her hearing took a big hit in a short amount of time.

Scarlett's cochlea does not process sounds correctly due to ototoxic chemotherapy.  She also has long-term damage from her shunt infection and high-dose antibiotics.

Her hearing is categorized right now as mild to moderate on the right, more severe on the left.  We got a graph to show what decibels and frequencies she is hearing and not hearing.  She can hear most speech sounds at close range, especially when we hold her or are face to face.  Those speech sounds fade and become difficult to understand around 6 feet away, or at lower volumes; this will make it very difficult for her to learn to speak properly without amplification.  She likely hears loud noises fine - things like alarms, live musicians, horns, and even dog barks (which we know she hears, thanks to Cosmo).  Subtler sounds, like television, phones, vacuums and normal speaking voices are harder to hear accurately.  Quiet sounds, like birds, leaves and drippy faucets are probably inaudible for her right now.  With hearing aids, she should be able to hear most all of these sounds, and with the support of speech therapy, should develop normal speech.  She is not currently a candidate for a cochlear implant, but may be if her hearing loss progresses.

We are looking into all the supportive services we can access for her.  There are a variety of hearing loss support services locally, most of which offer intervention for babies as young as 6 months.  We also need to take her for an ear, nose and throat evaluation just to be sure there are no other medical or anatomical reasons contributing to her hearing loss (a standard prerequisite), as well as a developmental assessment to see if any developmental challenges need to be addressed along with her hearing.

It was a very informative, but overwhelming appointment.  The cost of hearing aids is huge - anywhere from $1500 to $3000 per ear every few years, not including the inner ear molds and accessories.  Most insurance plans don't cover hearing aids, but it seems our current plan does - whew!  Hopefully we can get her situated with the hearing aids before we have any insurance changes.  However, in the event our insurance is not covering them, there are multiple ways to help fill the gap, including loaner hearing aids from the audiology department, state support services and payment plans.

Right now, her hearing feels like a huge undertaking, as she is at such a critical age for speech development (and if you saw the video from yesterday, she is already experimenting with her voice!)  We are already looking into what the best strategies are to support her communication, and the audiologists are suggesting we look at sign language as a supportive communication tool.  It will keep me busy for a while. 

Busy!

I don't think we could have fit one more thing into our weekend.  We did everything we wanted to do, including Cosmo's run at the dog park.  Scarlett got to meet about 20 of her relatives, and loved being out in the redwoods.  She enjoyed the choir and handbell concert at church, and even tried to sing along to a few songs.  She was so exhausted last night; we got our first experience with an "overtired" baby.

This morning, we slept in, then rushed around to be at the clinic on time (I forgot to check the time until this morning...)  Scarlett is all set to begin Cycle 4 on Wednesday.  She charmed everyone at the clinic, winning over everyone who was wary of her new caved-in look.  Unfortunately, it sounds like we have another adventure on the horizon...

We saw another of our favorite nurse practitioners, Jen, who checks Scarlett before she is admitted.  She was taken aback by the new head shape (but covered it well!) and snuck out into the hall to grab one of the neuro-oncologists.  The doctor thought it looked a little low, but said that is normal, not to worry.  However, Jen, who keeps very close tabs on the little miss and wanted more, pulled in Scarlett's doctor, who she fondly referred to as "The Big Cheese".  He was not as pleased.  He said she is fine, and we could wait it out, but in the interest of long-term and cosmetic issues, wants to have neurosurgery consult on...wait for it...another shunt.

AHH!  I hate these shunts!  The old one got infected.  This one is over-draining.  They said we could wait for it to work itself out, but it may need more attention.  Either way, they will wait until after this round of chemo is finished in two weeks before we do anything.  That makes June a busy month - MRI, hearing test, hearing aids, and now maybe surgery.  Summer used to be my kick-back time!

Luckily, Scarlett does not seem the least bit bothered by her head.  She feels great!  Her latest achievement: she has a tooth!  It is just pushing through the gums, a little nub.  She can hardly keep her fingers away from it and is covered in drool, but it is so cute!  Teething brings about a whole new set of issues for her - teething is often accompanied by fevers, which can be complicated for her.  Even so, I'm so glad to see her continuing to grow.

Here's a fun little video I took today of Scarlett talking to herself...

Weekend!!

This will be the first weekend we have had in...months?  Maybe since Scarlett was born.  Chris has both Saturday and Sunday off, Scarlett is relatively healthy and feeling good, the sun is out and we are ready to get out!!  There are so many things I want to do, even though I think Chris would love the opportunity to just sleep for the next two days.  We have a few birthday parties and a concert to attend, plus a few long-overdue tasks - Cosmo has been promised a dog park trip many times, but with a barfy baby and then a few days of rain, it just didn't happen.  Tomorrow is the day!

All my talk of exciting outings has everyone else worn out...

Naps for all the little ones, while I catch up on laundry.  Scarlett's room is finally beginning to look organized and clean again, and we will have clean clothes for all of our adventures!

Yesterday's CT scan looked good.  The ventricles in the remaining portion of her brain (where CSF is produced and circulated) are back to a normal size and shape.  This is a great improvement, and will eventually allow her head to grow back to a normal size and shape.  As bad as the collapsed bones look right now, the correct fluid pressure will help to push them back into position over the next few months.  I am more and more amazed by the infant brain every day. 

I hope everyone has a wonderful weekend!

CT

We are going today for a follow-up CT scan to check her fluid since the new shunt was placed about a month ago.  We have been a bit shocked over the difference in her head shape with this new shunt.  The left side of her head looks like it is caved in, the bones collapsing over the open space in her skull.  I have asked countless times, and am continually reassured that this is okay, even though it looks scary.  Apparently, the old shunt was draining very slowly, while this new one drains much faster.  This makes the CSF level low until the brain adjusts to the new drainage.  Since there is no brain matter on the left, the fluid is all the hold up the bones.  The bones won't heal for a while, so there is still time for the fluid to level out and push the bones back up into the correct position.  Regardless, it is difficult to see my baby's head so lopsided.  If we go out, she wears one of her many hats to avoid scaring other people (which has happened already - "Mommy, what's wrong with that baby's head?!") 

Yesterday, I forgot to add one of the most exciting things about Scarlett at 7 months: She is almost 15 pounds now!  As much as I fought the NG tube, I am glad we have it now because it is getting calories into her and she is growing.  We have officially packed up all the 0-3 month clothes (some of which still fit until last week or so) and will hope that Scarlett's new cousin is a girl so we can see them all again soon.

Finally, more GBM families have found us!  Faylynn is almost 3, finished with treatment and doing very well!  She lives in Maine, but her mom saw Betty's video and found me!  Lily is 2, and her dad started a Facebook group for families with Congenital Glioblastoma so that we can find hope and support with each other.  That makes 6 other kids I have seen whose stories are so much like Scarlett's, but who are done with treatment and thriving.  This is why I started this blog, to find more information and support and maybe some hope.  It worked!  Hooray!

7 Months

 Scarlett is 7 months old!!  She is getting stronger every day, holding her head up more, pushing with her legs and finally beginning to push up on her stomach!  She has tried rice cereal, bananas, pears, carrots and sweet potatoes, but nothing seems to interest her quite yet.  She babbles all the time, grabs whatever she can reach (including my hair) and tries to get everything in her mouth.  Still no teeth, though we check every day since it always seems likes she is teething.  This round of chemo hit her hard, so it has taken two full weeks for her to perk up again.  It seems like the ugliness is behind us for this round, so I am looking forward to enjoying her good moods and smiles!

Video

A few weeks ago, we met Betty, a student at San Jose State University studying Broadcast Journalism. She lives in the same town as we do, and went to our high school. She asked if she could use Scarlett's story for a school project. Here is the video she produced.

Great work Betty! Thanks for helping us share Scarlett's story!

*and just for the record, her surgeries were at Children's Hospital Oakland.  :-)

Spa-aaaah

I'm sorry it's been a few days.  I got a few messages wondering what is going on.  I've just been trying to keep up with everything, and blogging went to the back burner for a few days.  No big changes or emergencies, just busy and not much to tell.  Then today, I had a lovely day at the spa for a massage, facial, manicure and pedicure.  It's been months since I did anything relaxing like that.  Plus, I needed a break in a big way.  Chris piled Valentine's Day, my birthday, and Mother's Day (and probably our anniversary) into one big day.  After my afternoon of pampering and quiet, we went to the movies to see Bridesmaids, which was pretty hilarious (despite the people behind us who repeated nearly every funny line or action...I think a blind person could have enjoyed the movie from their play-by-plays!)  So, now that I've had a break, I can write a bit.

Scarlett and momma have had a hard week.  She has had trouble eating, and not really keeping down much that she will eat, so we are supplementing with the NG pump much more.  I'm sad and frustrated to have her hooked up to something all day, but it seems to help, so we do it.  I'm also struggling with how much medication she is taking, and how sleepy the medicine makes her.  I feel like she can't make progress or learn anything about the world when she is asleep, but sleeping lets her rest and feel better to be ready for those things another day.  The teacher in me wants to keep her moving, but she is not ready.  The tired grouch in me wants her to sleep so I can rest.  The mother in me just wants her to feel better.  I just keep reminding myself (or having the doctors remind me repeatedly) that this is not forever...it will get easier.

She is neutropenic (low white blood cell count) and scheduled for a blood transfusion for Monday, so we'll be staying in most of the weekend to be safe.

Mother's Day

Scarlett sent me flowers for Mother's Day (I think her daddy helped...)  I mostly enjoyed spending the day with a happy baby who is beginning to feel better.  It seems like she needs to throw up once in the morning, but then she does well all day.  I just hope that she begins to eat more soon.  She will take about 2 oz. ever few hours, but that's not nearly enough to meet her hydration and calorie needs, so we supplement every night with NG feeds.

I have not had much chance to reflect on what it is like to be a mother; I am too busy actually being one.  I feel like that last 7 months have been a blur, more "Extreme Mothering: Cancer Edition" than fairy tale.  I know other people look at me and think I am doing something incredible, but it is the only way I know.  Being Scarlett's mom is not an easy job, but I do find joy in it every day.  I love her little noises and smiles, the way she grabs my fingers and holds my hand close to her face.  I love everything about her, no matter how challenging, and I commit every day to fighting for her. 


I hope that next Mother's Day, chemo is behind us and I am still enjoying my little girl every day.

Reorienting

We came home yesterday.  Scarlett is not feeling great, but she is okay.  Probably a few more pukey days, but that's nothing new.  We do a lot of laundry after chemo.

I am trying to get the house clean and functional again.  It's a mess, even though we have hardly been here to make any messes.  We left in a hurry on Wednesday, so things like dishes did not make the priority list.  I am paying for it now.  Our cats are shedding like mad and our $18 yard sale Roomba (which has done the majority of the vacuuming since Scarlett was born) gave out, so I have to sweep and vacuum, and probably mop a little too.  Our mailbox was so stuffed that I am sure the mail carrier has finally had it with us.  It's nice to be home, but it is going to take some work before I can enjoy my house.

I had to go through all of the little girl clothes, since we have officially left 0-3 size behind.  She has SO many clothes in the next size, for every scenario and season, from fancy summer dresses to lined corduroy overalls.  I hope she doesn't grow too fast so that she can wear them all!

I am also adjusting to her new medication schedule.  She has 10 different medications on four different schedules - once, twice, three and four times a day, plus some as needed.  In the hospital, the nurses bring everything already dosed on time and I give the meds.  At home, I have a new iPhone app that alarms for her meds so that I don't forget or lose track of time.  It seems silly to need it, but when something is due every few hours, I am bound to forget something.  I also bought a scrapbooking organizer caddy to hold all her medications when we go out. 

I hope everyone has a wonderful Mother's Day.  We don't have any big plans, but I am sure I will still feel just as appreciated.  :-)  A special Mother's Day wish to my sister, Scarlett's Auntie Lindi, who is officially pregnant!  Cousin Orange-o, as Chris and I fondly refer to him/her, will be joining us sometime in November.

Feeling Good

Scarlett was admitted yesterday for chemo.  She is coming through this round really well so far.  She doesn't seem to feel sick and is happy to play with her fingers, stick her hand in her mouth and look at herself in the mirror.  Her doctors changed her chemo plan to help preserve her remaining hearing, and the replacement drug seems to be much, MUCH easier on her.  While I am glad she feels better this time around, I hope that it is just as effective as the last drug.  I would rather have her feeling sick for a few days, and even deaf, than have the tumor grow back.  The doctors are confidant, so I will try to be.

We only had two days at home, but it was not so traumatizing to come back in because it was scheduled.  I always do better when there is a plan, and this particular plan is working out well.  Now that we have been in and out so many times, we know exactly what to bring, what to expect, and how to settle in quickly.  I feel so comfortable walking around the hospital, going to get coffee in my pajamas, where the cafeteria barista knows my order, the security guards know where I am going and I see nurses and hospital staff we have worked with all over.  It's a very strange version of a hotel where Scarlett is the VIP and I am her manager.

If she continues to do as well as she has been, we will be discharged tomorrow evening.  Then, if we are lucky, we will have two whole weeks of freedom!!  Fingers crossed, knock on wood!

Relay For Life

Everything is fine at home.  It looks like we may be going back to the hospital today instead of tomorrow, but we have to wait to see if there is a bed available.

I have been getting many letters from our readers who are participating in Relay For Life with Scarlett in mind.  These are amazing events that raise awareness and funds for the American Cancer Society.  We are hoping to attend some of our local events, but it will depend on Scarlett's schedule.  

To learn more about Relay and find Relay events in your area, click here. 

Thanks to Scarlett's Relayers!

Ashley Poirier

Debbie Duncan

Amy Tuleen

FUN Mom's Club

You can donate toward these or any Relay events to help raise money for cancer research.  Research is the only way to find a cure.

Home

We're home!  We've had some challenges getting her medications sorted out, but otherwise, it's been lovely.  We all slept well, got dressed up, went out to breakfast and now Scarlett and I are relaxing (Chris had to work - boo!!)  The sun is shining and warm.  What a good day to be out!

May is Brain Cancer Awareness Month

Brain Tumor Awareness Month

May is Brain Tumor Awareness Month.

Brain tumors are the most deadly of pediatric cancers.  More than 3,000 kids are diagnosed each year, and just a few of those are babies.  There have been huge advancements in the past few decades, but the prognosis is still grim for children with brain cancer.  We need research to find a better treatment and cure for kids like Scarlett.  The National Brain Tumor Society has ways for you to help.

We get a lot of questions about Scarlett.  I am happy to share and answer questions, since I know most people don't have any experience with kids with cancer.  I want to promote as much understanding and support of Scarlett and her fellow cancer fighters as I can.

How did you know she had a tumor?

We had no idea.  There were no outward signs that anything was wrong.  Most kids present with symptoms like vomiting, dizziness, seizures, or lethargy.  She had none of these, just a bruise above her left eye.  Our family doctor got an emergency CT scan at her 2 month Well Check based on her fontanel (soft spot on her head) bulging and being tight and her increased head circumference.  We didn't know it was abnormal - that is something never covered in the baby books.

You can barely see the bruise above her left eye.  This was taken a few days before the tumor was discovered.

What caused it?
Scarlett's tumor was congenital, which means she was born with it.  It developed along with her brain in utero.  Unlike many cancers, there is no known cause nor risk factors; somewhere in her development, a cell mutated, and from there the tumor grew, absorbing blood and nutrients from her growing brain.

Where does she get her treatment?

Her major surgeries were done at Children's Hospital Oakland in Oakland, CA.  She was diagnosed and now has chemotherapy at Lucile Packard Children's Hospital at Stanford in Palo Alto, CA.  She is a part of a research study (SJYC07) in conjunction with St. Jude Children's Research Hospital, but all elements of the study are done at LPCH.  Both near our home in the San Francisco Bay Area.

Why does she have to do chemo if the tumor was fully removed?

There is no way to guarantee that every cancer cell was removed.  This type of tumor is very aggressive and can grow back quickly from even once cell.  Chemotherapy aims to kill the cancer cells so they can never grow back.

Will her brain grow or expand and fill her skull again?

The pink line outlines the tumor in December.  After surgery, that area is all fluid.  The blue line is the midline of the brain, which was once pushed to the right but is now centered.

No.  Her tumor was very large, even among other brain tumors.  It did irreparable damage to the brain structures.  Most of her left hemisphere never developed.  Once the tumor was removed, her brain did move slightly; this is likely the cause of the seizures she experienced early on.  I think of it like her brain could finally exhale after holding it all in to make room as the tumor grew.

How long is her treatment?
Her particular protocol has 12 cycles, each one month in duration, that includes various chemotherapies, imaging, tests and recovery.  We have already experienced some delays due to infections, low blood counts, and surgeries, so we hope for her to be off therapy by summer 2012.  If there is any regrowth, we will have to reevaluate her treatment and see what comes next; though we hope to avoid it, radiation may be necessary in the future.

What kind of long term effects does the tumor and chemotherapy have on her development?

We don't know.  Every brain heals differently from such a large injury.  Baby brains are amazingly adaptable.  As of now, there are no real signs of neurological challenges.  We know that she may have some limited peripheral vision on the right, but we won't be sure until she is older and can tell us what she sees.  We are learning she has some hearing loss due to one of the chemo drugs; further testing will give us a better idea, and then her doctors may alter her therapy plan.  Despite missing most of the left hemisphere, she moves both her left and right sides equally.  She gets physical therapy and occupational therapy to help make up for all the time she spends in hospital beds and to help her learn to manage her heavy, unbalanced head.  Otherwise, we will just see what happens as she gets older and adjust as we go. 

Chemotherapy can have cognitive effects on developing brains.  It can also lead to increased risk of subsequent cancers years after the initial therapy is complete.

Why does she need a shunt (especially if they get infected?!?)?

The tumor damage caused a secondary condition called Hydrocephalus, which essentially means too much fluid in the brain.  Brains are suspended in, cushioned by and filled with cerebral spinal fluid (CSF).  Most brains produce and drain CSF constantly on their own.  People with Hydrocephalus have problems with drainage, so the fluid builds up and causes pressure in the brain.  In babies, this expands the cranium and causes the head to be enlarged.  In older kids or adults, it causes headaches, seizures, etc. because the bones of the cranium are fused and cannot accommodate the increased pressure.

Shunts are placed in the brain to help drain CSF to maintain appropriate inter-cranial pressure.  A shunt is an artificial drain to move CSF out of the brain to the abdomen where it can be reabsorbed.  She will always need a shunt.  It should not limit her activity as she gets older.  Unfortunately, shunts are prone to infection and malfunction.  When they get infected, heavy doses of antibiotics are used to clear the CSF, and then a new shunt many be necessary (she is on shunt #2 already).  It is an imperfect solution to the problem, but it is the best we have now.

When will she be in remission/cured?

I am not sure, really.  She will be a part of the study for many years.  She will get MRIs every two months right now, then we will begin to spread them out to once a year after she finishes chemo.  I think she will visit the neurosurgeon (for the shunt) and neuro-oncolgist (for the tumor) at least once a year as long as she can.  I don't know if I will ever be able to stop worrying that the cancer will return.