Thursday, August 30, 2012

Big Changes

Did you think we forgot about you?

You may have guessed what happened:  I got a job!  I am now teaching kindergarten full time at a school just a few blocks from our house.  I interviewed weeks ago, then heard nothing for almost two weeks.  Four days before school started, I got a call with an offer, and I jumped at it!  I spent the weekend getting my classroom materials out of storage, setting up the classroom, getting some work-appropriate clothes (I was 8 months pregnant last time I got work clothes!) and getting my head ready for a class of 27 kids.  To top it off, I spoke at a local Relay for Life event, sharing Scarlett's story in front of hundreds of people.

First day of school!
Thursday was my first day of professional development before school began.  It was also Scarlett's first day of preschool!  Technically, she is in the "toddler class" at her school, 3 hours each day Monday through Thursday.  She loves it, is engaged throughout the class and is starting to show some great progress already.  She has an aide who helps her get around the room, and with help from the teacher, speech and occupational therapists, she is doing amazing things!  Today, I hear she did some yoga with her pre-K (4 year old) buddy.

These new developments have led to some major changes in our house.  Since I am working all day, Chris is now the chauffeur for Scarlett.  He works at Starbucks on the weekends (for now...) and manages Scarlett's schedule all week.  It's hard for me to miss out on everything, but I am so happy to see him get the chance to spend more time with Scarlett while I bring home the bacon.

The schedule he needs to maintain is tight.  The school is an hour away, plus commute traffic.  He leaves home at 7:30am (after getting Scarlett fed and dressed), and drives to Berkeley.  They play at school until noon, then head home for a brief nap.  Scarlett's therapies are provided by a separate program, so after her nap (or often in the middle of it) they head off to PT or OT in the afternoons Monday-Wednesday.  That leaves Thursday for all the doctors and specialists.  Friday, he goes to work in the afternoon while my mom takes Scarlett until I get home from work.

As you may imagine, this first week has been difficult.  We are all tired, including Scarlett, who is finally sleeping through the night after a few months of 2am screaming parties.  The laundry is piled up, phone calls are un-returned and we've eaten out a lot.  But we are making it work, and hope that things will level out over the next few weeks.

As difficult as it will be for me to miss out on so much of Scarlett's day-to-day activities, this job marks the beginning of a new era.  We have been scraping by on Chris' minimal Starbucks pay for over a year.  We are hoping we can make the most of living with my parents and save so that we can come out of this experience with a more stable financial situation.  And in the end, I enjoy my job, despite the crying kids and piles of paperwork.  I am glad to be able to get back to the job I worked so hard for before Scarlett was born.

We are going to make some time this weekend to work out details of Scarlett's Birthday Blood Drive (coming October 20!), so we hope to have that available soon.  As always, I will try my best to update the blog as often as possible to give everyone their dose of Scarlett!

Tuesday, August 21, 2012

Back on Track (22 Months!)

Yesterday, just as I had hoped, Scarlett was back to her happy, playful self when I got to the hospital.  She was insisting on sitting up, grabbing EVERYTHING, was IV free and handling her meals and medications well.  The doctors were only partially convinced, but once they knew we only lived half an hour away, they agreed she was ready for a jailbreak.  She was discharged with just Vicodin for pain and we were home in time for lunch.  She goes back for a follow up Thursday, but finally seems to be feeling well after weeks of building pressure from a malfunctioning shunt (the problem was identified as some slight protein build-up in the valve.)

In the ER
Finally asleep after hours of screaming (sorry to all the other families in the was our turn to be the noisy neighbor!)
Starting to feel better, as evidenced by the constant grabbing of wires.  She was particularly annoyed by the head wrap and her glowing thumb.
Mellowed out with some good drugs.
Unfortunately, she still needs a shunt.  She may always need it, she may not, but for now we have to live with it.  Shunts are notoriously difficult for some people, so we just have to hope this one is the right one for a while, and keep an eye on her.  Now that we have seen the neurological symptoms hit so violently a few times, we will be better prepared (but still freaked out!) next time.

It's amazing how quickly she has bounced back from the terror over the weekend.  She woke up this morning early, all smiles, ready to play.  She hasn't had any medication for more than 12 hours, and is right back on her regular schedule.  She is clear to go to school on Thursday, even with exposed stitches on the back of her head.  If we had to wait for her to be completely suture-free, she may never leave the house!  Her emergency backpack, extra clothes, diapers, pile of registration forms and a picture of mommy and daddy are ready to go.  

I am still waiting to hear about a job for me - it is absolute torture not knowing, but I am still pretty confident something will work out, even if it is at the last minute.

And, since we missed it...Scarlett Grace is now 22 months old!  She has lost a little weight with all this drama, down to 22 pounds, 4 ounces.  She now has a whole slew of "tricks" that she will do with us.  She waves bye-bye, claps for "Yea!", gives a tiny, gentle high-5 and, most recently, does the goofiest grin.  I really feel like she is ready to pick up more, and I think her school, where everyone signs and speaks simultaneously, will give her the push she needs.  
The goofy grin!
 She had been so sick most of this month that she hasn't wanted to play much.  However, as soon as she was feeling better yesterday, she was pushing herself from laying to sitting.  She could use the crib bars to pull her self up, too.  She can pull herself from sitting on my lap to standing at a table or the couch.  She still hates the notion of crawling, but can stay on her hands and knees sturdily.  In getting her ready for school, we had to make sure she had an appropriate chair for the tiny teaching table.  After asking every therapist and worrying about it, I decided to just give their little plastic cube seats (for "typical" kids who can sit independently)...and she was fine!  Her feet just barely graze the floor, and she can reach the table.  With just some minor modifications, she should be able to use the regular chairs with no problem - a small but meaningful win for us.

This month has not been all hospitals!  We went to Happy Hollow Park and Zoo , an amusement park for preschoolers.  Scarlett got to feed goats, pet a zebu and ride her first carousel.

She also got to go to her first Relay for Life.  It was very touching how excited everyone was to see Scarlett.  Last year we had hoped to go, but she was much too sick.  This year, three different events invited us, and we made it to one, and will go to another this weekend.  Since Scarlett was youngest survivor, the Relay team from our local Disney store put together a special present for her!  She is ready for some serious princess play.
Thanks to the "Volunt-ears" from the Disney Store for Scarlett's special gift!
 She also got the gear from the American Cancer Society, including a survivor medal.  It was very hot, so we couldn't stay too long, but Scarlett did the Survivor's lap and visited all the team booths.

Too hot for smiles.
Thank you to everyone who had a special treat for survivors!  Seeing so many survivors and supporters at the Relay really reminded me what an amazing thing she has overcome, and how lucky we are to have her with us.

22 months old means just two months until Scarlett's 2nd Birthday Blood Drive!  More details will be coming soon, but if you want to help, or have something neat we can raffle off, email me at scarlettgrace2010[at]gmail[dot]com!

Sunday, August 19, 2012

Surgery #12

We are ending day 3 in the hospital.  She is stable, but it's been quite a roller coaster.  But let me back up.

Scarlett had a cold all week.  A runny nose, minor fever, nothing big.   After three days, we say her pediatrician about the fever, just as a precaution.  She told us not to worry, normal babies get colds, to let it pass.  The next day, the fever was clear and we thought we were on our way.

Thursday afternoon, she was getting more irritable, smacking her head, clingy, not sleeping, and a low fever came back.  We gave Tylenol, got her into bed and said we would call someone in the morning if strange symptoms persisted.

After she had been in bed about an hour, we heard her start to wiggle.  I went in to reposition her and make sure her pacifier was within reach, and then it started.  Projectile vomiting.  Everywhere. Chris, my mom and I all jumped into action, getting towels, sitting with her and cleaning out the crib. She kept throwing up until her stomach was empty, and then kept going.  Then she started screaming, arching her back and kicking.  That was my cue.  I called the on-call neurosurgeon (who ended up being her doctor - I swear he never sleeps).  He said to bring her to the ER now.  I had a feeling he would say that; I was half dressed by the time I hung up.

Mom held Scarlett as she screamed while Chris and I threw together our hospital gear. We have done it enough that we knew exactly what we would need - yoga pants, slippers, sweatshirt, phone charger, iPad, her soft blanket, extra pacifier.  My dad handed me a pile of towels as we got to the car.

The drive to Oakland should have been easy, but there was construction.  We were stuck in traffic at 11pm with a gagging baby!  Oy.  We finally got the the ER and they took her straight back to a room.  A lot of questions, an IV, and some blood cultures, and then we waited.  Of course, once we arrived, Scarlett did not throw up, and did not have any fevers.  Not a single one.  Luckily, they took our word about what had happened and moved on the symptoms we had seen.  There was a "nursing issue" in the PICU, so we stayed in the ER until 5am.   Chris went home around 1:30am to rest for work the next day, and I tried to sleep in a plastic chair.

Of course, they didn't really know what to do with her.  Someone wasn't listening about the history of shunt malfunction, and assumed she had an infection.  They started her on heavy duty antibiotics -  not something I was happy to wake up to.  She was on a second antibiotic for a possible urinary tract infection, though the doctor admitted it was probably a contaminated sample rather than any  discernible infection.  Basically, they were spinning their wheels until neurosurgery made a decision. 

Finally, the neurosurgeon made his grand entrance.   Within one minute, he said that we should just get this over with, fix the shunt and get rid of the bubble on her head and put this behind us.  THAT was what I wanted to hear!  He had had enough, and so had I.  She was scheduled as an "add on" for an MRI and then surgery that day.

We waited all day.  The MRI finally happened around 1 pm. Sometime during the day, she got a second IV to handle multiple antibiotics.  Before long, the first IV was useless, so it came out.  We were told that she would be last for surgery, around 8 pm.  At 8:30, we got the call to bring her in.  I saw the surgeon briefly - he had done back-to-back brain surgeries all day.  As I signed consent and talked with the anesthesiologist, Scarlett grinned and waved to the nurses.  They took her back for her twelfth surgery.

Chris arrived just after I passed her off, straight from work.  I was exhausted, having had only a few hours sleep in the last day, so I headed home while he settled in for the post-surgery night.  We were there together so briefly that the parking garage had not even had time to charge us yet before I left!  Of course, as I drive home, an A's game was letting out so there was more traffic.
She was out of surgery around 11:30, and had a pretty quiet night.  They ended up changing the shunt valve, but none of the tubing, so she just ahs a small incision on the back of her head.  The next morning, I met Chris back at the hospital and sent him home to get ready for another work shift.  Poor guy.

All day Saturday, she was unsettled.  Around 2, she started crying, and it escalated.  She was kicking, thrashing into the crib rails, screaming and completely inconsoleable.  She did not sleep all day.  We kept giving pain medications - morphine seemed to do nothing, tylenol with codeine lasted just a short time.  The brought lorazepam, an anti-anxiety medication, to try to calm her down.  She would calm down for a few minutes, but still startled awake to scream frequently. She wouldn't let us pick her up, move her or hardly touch her without a fit.  It was harrowing.  Once she had all three drugs on board simultaneously, she was finally able to fall asleep around 7pm.  She woke up screaming at 1am, and only fell asleep once all three medications were given.

This morning, she was still the same; once the medications wore down, she was completely out of control.  She has never, in all her surgeries, hospitalizations and procedures, been this way.  The PICU doctors called the neurosurgeons ("on call", but not really present on weekends).  The physician's assistant came to see her, and felt there was not much they could do for her other than treat for pain.  So soon after surgery, they felt that her unhappiness was caused by incision pain and maybe a headache from the fluid shifting.  So, Scarlett kept screaming.

Another call was made, and then suddenly the surgeon was walking into the PICU in jeans...brought in on his day off, when he wasn't on call (though I think he is always around).  We heard the nurses talking about him before we saw him.  He wanted to check on Scarlett since he had heard she was not doing well.  He looked at her, felt under the bandages on her head, and declared her "fine" - fussiness caused by incision pain and discomfort, not intracranial pressure.  He said we could do a scan Monday morning, but then she should be ready to go home.

So all day, we have been trying to keep up with her hugely fluxuating moods, thrashing and screaming.  We tried higher doses of meds, switching tylenol with codeine with vicodin, feeding her, NOT feeding her, giving laxatives (all the narcotics cause wicked constipation), repositioning, blankets, no blankets.  We have looked up and down for a cause, but I can't find anything. 

I am now home for the night, and Chris is in the PICU with Scarlett.  He just texted (no calls allowed) that her second IV is failing.  Since she is on IV meds, I am sure they will put another one in.  Our plan is to make it clear we don't feel comfortable taking her home tomorrow in this condition.

This was not what we expected.  Every other surgery has gone so smoothly, with fast recovery.  It's not unreasonable to expect her to be out of sorts, but it is scary and heartbreaking to see her in so much pain.  Tomorrow morning, I will head back, and I hope to see a Scarlett I recognize a little more.

On top of all this, it's school week.  Scarlett starts preschool on Thursday (4 days/week starting next Monday).  I would hate for her to miss the first day.  In addition, we are entering week two of waiting to hear if I have a job.  I interviewed last week, and then the district made a bunch of changes to what was available.  When I called on Thursday morning, I was told I would hear "early next week".  School starts in a week, with teacher prep days beginning Wednesday.  If I have a classroom to set up (which, despite the last-minute stress, I hope I do) it will have to happen in the next few days.  I hope, hope, HOPE I hear something tomorrow so I can stop waiting and start getting ready.

Thursday, August 9, 2012

Shunt Update

Today we went to a follow up appointment with Scarlett's neurosurgeon.  After last weekend's wild ride, we were a tad nervous about what he might say.  After an annoying scheduling mix-up, we got her quick-scan MRI (only takes 5 minutes, requires no sedation, a parent can stay with her, and no radiation exposure like CTs...the fancy pants at Stanford don't have one!) and headed up to the clinic.

The physician's assistant, who has seen Scarlett at every visit, took the basic details, and then, after a quick look at her, he said, "I just don't know.  I think we just need the doctor to come in and decide."  Hmm.

At this hospital, this surgeon is the top of the food chain.  Even his office is on the top floor.  No one makes any decisions that might compromise his patients...and Scarlett is one of his pet projects, I think.  Understandably: he has spent more than 30 hours in her brain.  He saved her life. It's his turf.

When the surgeon came in, he told us that he feels this shunt is not working properly.  After the pretty major change he made to the adjustable setting last Friday, there has been almost no change.  True, Scarlett seems to feel better.  She is not throwing up, is going to bed without a screaming fight (something we had never struggled with until last week) and seems to be in a better mood most of the time.  However, the bubble on her head is still just as massive as it was last week.  Her fluid-filled ventricles are just as enlarged.  Something is just not right.

I am no brain surgeon (obviously!).  I don't understand the intricacies of how shunts work, why they don't seem to be very reliable, and why Scarlett's little brain is so difficult to properly regulate.  He showed us two images side-by-side to help illustrate the problem:  on the left, we saw an older image, where it looked like a third of her brain (the tumor) has been scooped out with a spoon; all the fluid was accumulated in one large space (which later allowed the bones to collapse).  On the right, we saw her most current imaging, which showed a few smaller spaces, divided by thin lines (membrane of some kind, I think), as the fluid has redistributed itself.  The shunt glows bright in the MRI images, and we could see in the first image it was placed in the big fluid space, but was now in a smaller space.  With all the changes her brain has made since the first shunt was placed, the catheter was no longer in the most effective space.  Or at least that's what I took away from it all.

He then said something very enticing.  Scarlett may not need this shunt.  She may not need any shunt.  Her brain is showing that it is reabsorbing the vast majority of fluid on its own.  Really???  You mean she could be a completely medical device-free kid eventually?  I wish I could do something to make this a reality, but it's up to her brain to do the hard work and manage itself.

We left with another shunt adjustment and a two week wait.  If, in two weeks, we don't see some kind of significant change, the shunt removal discussion will begin.  Maybe.  If the doctor feels comfortable - it is, after all, his decision.  We have our fingers crossed!  In the meantime, we are on high alert, again, for neurological symptoms.  The adjustments that have been made are pretty significant, and could equate to major changes if her body isn't ready.  I'm watching, as always.

First Haircut

For the last few days, I have seen this:

That is some major (adorable!) bed head!  From the back...

Some curls, but mainly a little nest around the big egg of fluid that is still sitting on top of her shunt.

We started discussing a haircut a few weeks ago.  Scarlett is not a big fan of anything that touches her head, face or neck, thanks to the...extra attention...that has been focused there for so long.  So after she eats...

...the wiping, brushing and detangling necessary became one more battle than I wanted.  This won't be fun for her teachers at school in a few weeks.  Additionally, her hair is still growing in after her surgeries in May.  Neurosurgeons are definitely not hair stylists!  She was left with a bald streak across the top of her head from ear to ear, a stripe from front to back and a section over the shunt for good measure.  Those sections have gotten to be about an inch long, and stick out.  In the back there are short sections among the long curls.  It was time to clean it up.

So today, Chris and got organized and made it happen.  After her bath, when her hair was nice and wet, we combed it out, decided where her bangs would start.  We set everything out and got ready to work fast!

She chewed on her green comb while I tried to work around her wiggles.

Evened out the back around the big bubble - didn't cut the sides, but they brushed back short.
Trimmed the bangs.
 She sat still for all of 30 seconds or so, but we did manage to even it all out.  We didn't cut very much, and saved it in a plastic bag.  Even though her hair has been cut so much for surgeries, we wanted to save this as a memento of her first "real" haircut!

 And now, she can see without wisps in her eyes!  It's a little short, but, like I always say about my own short cuts, hair grows.  In a couple months, the surgical sites will have grown out, and it will be time for pigtails!

Luckily, her bows still work well, so we shouldn't get too many "What a handsome little boy!" comments!

Saturday, August 4, 2012

Close Call

If you see our Facebook posts, you know we have had a very crazy few days.  We're still home recovering, but Chris has to head back to work (his Starbucks store was closed all week for a remodel - sadly, this meant no work and no pay for any of that store's employees).  

Scarlett has been cranky for a few weeks.  It's been difficult, and we have been on the lookout for a cause.  Every one of her teachers and therapists have noticed the change - she doesn't hardy participate in therapy, just cries; she won't let anyone else hold her, and cries anytime I am in sight; she won't play independently; her sleep schedule has been off.  It's been a tough few weeks, but nothing seemed doctor-worthy.  We all agrees she is the right age for separation anxiety, and is rightfully frustrated over her lack of mobility, so we have been focusing on those areas.

Last Thursday, she was nearly inconsolable, and then woke up a lot in the night.  I decided not to take her to school on Friday, and took her to the GI doctor instead.  She seemed uncomfortable and very sensitive to being touched anywhere near her g-tube, so I thought maybe it was infected.  The nurse there saw a small red spot, but said that it was fine, calling her tube site "pristine".  She gave me a cream to help stave off any possible irritation, and sent us on our way.

Monday was nerve-wracking thanks to vaccines.  She seemed fine, though a slight fever developed in the afternoon.  We expected that, gave Tylenol, and moved on.  Sometime in the evening, she threw up a little.  We are so desensitized to vomit, we just took it in stride, attributed it to the rough day with vaccines and a hearing test, and thought nothing of it.

Tuesday, she threw up again.  Wednesday, she threw up twice.  If it had been a "normal" puke episode, we would have probably overlooked it, but she started to act very strangely.  She would scream - like a deep, stark scream that we had never heard before - then look disoriented until she threw up just a little.  It was disconcerting.

After the second episode of this on Thursday, I was done.  I called the pediatrician, who we consider a  "gatekeeper" to more serious doctors.  She's not a brain tumor specialist, but her office is just a few minutes away, and can rule out some things before we move to more extreme measures.  Especially since I was still considering the vaccines to be a possible cause, it seemed appropriate.  I left a message with the office, then waited for a call back.  After an hour with no response, I was feeling more impatient, so I called the Neuro-Oncology nurse line, hoping someone who knew Scarlett well would be able to advise.  The nurse suggested I call the pediatrician again and ask them to see Scarlett for a neurological check - pupils, reflexes, blood pressure, etc. - just to be careful.  I agreed, and made a second call to the pediatrician's office.

I had just hung up and handed Scarlett a few cheerios when the phone rang again.  It was the Oncology nurse, asking us to please pack up and come straight in; after hearing the list of symptoms, the doctors wanted Scarlett to be seen immediately.  We jumped into gear - changing clothes (we had been gardening), packing Scarlett, packing some food (they asked we did not feed her until they had seen her) and getting out the door. 

Apparently, they had decided they would do a CT scan before we had even arrived.  After a brief visit with one of the doctors, we went to radiology, where they informed us that the machines were damaged after the hospital's second construction-related plumbing break in the last year; luckily, the children's hospital is attached to the main Stanford Medical Center, so we walked through three buildings to their radiology department and got the scan right away.

By the time we returned to the clinic to see the doctor again, it was after 5 o'clock, so everyone was gone.  One medical assistant was left to communicate with the doctors as they reviewed the scans.  After a few minutes, my phone rang.  The caller ID told me it was Scarlett's doctor, the head of the department, who we rarely ever see anymore.  My heart nearly stopped, afraid of why they would have him call us.  The idea that the tumor could return is never far from my mind in these situations.

When I answered the phone, he said hi, and then immediately followed with "It's not tumor."  Whew.  That's one of the things we have always liked about this team of doctors: they understand us, and know what we need to know first.  However, he didn't have great news.  There was a build-up of fluid in the ventricles of her brain and she needed to be seen by neurosurgery immediately.  We asked if we had time to stop to grab dinner and some clothes; he said we should just get to the emergency room in Oakland as soon as possible.  He walked us to the door of the hospital, wished us luck, and we were off.

Now, I have to apologize to him:  Dr. Fisher, we stopped and got clothes anyway.  And we grabbed called-ahead food from a diner.  Sorry.  

The stopping didn't matter much, since it was prime commute traffic time.  We were in bumper to bumper traffic for almost two hours.  Driving from Palo Alto to Oakland (from the southwest to northeast edges of San Francisco Bay) is never fun, and it was the worst time of day to do it.  We chose to avoid the bigger bridges and stick to the more direct freeways, which passed by our house.  On the way, I was CC'd on an e-mail from doctor to doctor, with the CT images attached.  We finally got to the Emergency Room at 7:30.

We've never been to the ER in Oakland, and let me just say I hope to never have to do it again. It's a rough part of town, and the clientele reflects that.  There were multiple security doors to pass through, with guards at each one.  The staff was stretched, and took nearly two hours to figure out what to do with us, even though the neurosurgeon was waiting for us (he had apparently left by the time they got themselves organized; he had called us, but there was no cell service in the ER).  We waited in the ER for more than an hour before they started making arrangements to have her admitted.  The one highlight was being able to get the IV in on the first try - we've never gotten an IV in Scarlett while she was awake without a big fight.  We finally got a bed upstairs around 9:30.

Since only one parent could stay, I headed home.  As I left, the nurse was writing "possible surgery tomorrow", and was clarifying that Scarlett would be NPO (no food) until further notice.

When I returned the next morning, Chris had yet to see anyone from Neurosurgery.  Scarlett had not slept much though the night, so neither had he.  She was hungry and unhappy.  The nurses were still prepping Scarlett for surgery, giving her a bath and organizing her charts for transport.  Finally, the neurosurgery team came by to see her.  They said the surgeon, who was making rounds on a different floor, would still decide what needed to happen when he saw her, and that any procedure would be late in the afternoon. 

We were very frustrated - why had we been sent there if no one was going to do anything all night?  She was not dehydrated, so she did not need the fluids she got overnight.  It seemed like a lot of hassle for nothing.

Later, the surgeon finally came by.  He asked why we hadn't called them first.  I tried to explain how many other things there were to consider, that we didn't know it was a shunt problem, and that we had just done what we thought was best.  They don't seem to quite understand how difficult it is to manage Scarlett's needs.  If I had known it was a shunt problem, I would have cut out all the middlemen and called them directly.

After some poking and prodding, the neurosurgeon decided to change the setting on Scarlett's shunt from the most constricted setting to a more open setting, allowing more fluid to drain from her brain.  It is simply adjusted using a special magnet pressed to the outside of her head.  No surgery, at least for now.  We are going to watch her for the next week, then go back in Thursday for another scan to see if things look better.  She didn't need to go to the ER, stay overnight or get an IV, but since we weren't sure who to call, it went much further than it needed to.

So far, her symptoms are not much better - she is still cranky, has still thrown up a few times, and still seems off.  The one good thing is that the bubble of fluid that has been on the back of her head, which has apparently been growing (though we felt it wasn't much different - the doctor disagreed) is now much smaller, softer and less noticeable.  I think that some of the other ideas we had - teething and separation anxiety - are still plausible, but I hope that releasing some of the pressure in her head will take the edge off her moodiness.  It takes a few days for the brain to level out after a shunt change, so we are keeping our fingers crossed that we will see some improvement soon.

Sadly, we also missed an important hearing test Friday morning as this was being sorted out.  It took more than a month to schedule it, required an extra appointment we will have to repeat, and can't be rescheduled for another month.  Her hearing aid ear molds were supposed to be refit yesterday, too, so she will go another month (or more) with ill-fitting hearing aids.  Oh well.

Sometimes I wonder if this is what it will always be like for Scarlett - always wondering when the next crisis will hit, always on the lookout for symptoms.  As soon as we start to feel more normal, we get a harsh reminder of the way Scarlett's childhood will always be colored by cancer.  I hope that one day, she might be able to forget, even for just a while, about doctors, therapy and hospitals.  It seems a long way off.