Surgery Five

I am calm. After months of waiting, and days of terrible anxiety and restlessness, I am finally calm.

Surgery went extremely well today.  Emma is simply amazing; I just can't even begin to tell you.  I thank God for every one of today's blessings.  Thank you.

Today went as planned.  Got up at 5am, check in to hospital by 6, surgery at 7:30am.  I felt good about it.  But extremely exhausted, as I wasn't able to sleep the night before.  I never sleep the night before surgeries.  It was at 3am when I had a realization that I had to get up in two hours, so I put myself to bed.  Note to self: make sure to get some rest before surgeries.  There is hardly time for good sleep afterwards, and running on empty is really terrible.

I am thankful for everyone that made an appearance today to support our family while Emma was in surgery.  Thank you for being there for us.  Food and friendship always make the journey much easier. 

Operation

From what I can recall, surgery lasted about five hours.  Although they took her back at 7:30am, our actual surgery time didn't start until after 9am, it seems.  It takes while to put her under anesthesia, install IV's, place electrodes, shave her hair (great haircut this time, yay!), and whatever else they do back there to prep patients.  I kept my composure for most of the time, but started to feel a little anxiety here and there.  At 2pm, they finally called us back to a consult room to speak with the doctor.  My stomach turned.

Our neurosurgeon is awesome.  After every surgery, the family piles into this little room where we wait for him to tell us how it went.  At the end, Dr. Andrew Jea always emerges fresh and somewhat energized.  How someone can do this fine, precision work for hours on end and arrive moments later to meet you without exhibiting a speck of exhaustion, I just don't know.  Excited, but somehow reserved.  That's how he was after this surgery.  He told us that everything went well.  Emma had no deficits, no issues that could be immediately detected.  Vocal chords are intact, swallowing intact, no damage to any arteries.  Awesome.

The tumor was stickier than it had been before.  As previously mentioned, it was not very well defined and was harder to remove completely.  Dr. Jea performed a sub-total resection, leaving about 10% of the tumor   capsule in the area.  My understanding is that some tumors have a thin membrane, or a "skin" they are covered in, or capsule.  He removed the tumor, but had to leave some of the capsule as it was connected to various nerves that we didn't want to damage.  As promised, he delivered us our little Emma--intact.  Thank you Dr. Jea; I really can't say enough.  We are blessed to have you.

The difficulty in this news is that there is still residual tumor left.  Yes, we knew this would be the case.  Remember, our goal was not to remove the tumor in its entirety, but to remove as much as possible and let radiation and chemo take care of the rest.  So I'll take the 10%.  That's good enough for me.  As long as I have my daughter alive, and her quality of life is still good, I'll take it.

PACU Days

In case you are wondering what the acronym stands for, its Post-Anesthesia Recovery Unit, or PACU.  One of our many homes away from home. I can honestly say I am both happy and sad to know everyone's names personally, all of the lovely folk in PACU.  I frequently get asked if I work at the hospital.  That's how often we are there.  

I am always in such an anxious frenzy on our way to see Emma in recovery.  After our talk with Dr. Jea, we are directed back to see her in Recovery.  I make my way back to her bed, greeting the nurses that I know.    Finally seeing Emma though, was just a punch in the gut; relief and yet pain, all at once.  Here you are for so long, trying to keep yourself from thinking these dark thoughts, and not visualizing your kid in an hospital bed, when there it is, right in front of you.  The realization that she had to go through this all over again hit me.  My heart was heavy. I fought back the overwhelming emotions.  I went to hold her hand, to kiss her on the cheek and let her know I was here.  I'm so sorry Emma.

"You did awesome, baby," I whispered.  I often wonder how she will be when she wakes up.  This time, she was marvelous.  She had already spoken in very articulate words and with lots of movement, that she wanted ice chips and water, and that her dry throat was bothering her.  This is good.  Amazing that she is taking and moving so well.  But apparently, I had missed most of this, as I got there when the morphine had just started to kick in, and the drowsiness was overcoming her.  Her speech was slurred, eyes were barely open, she was in and out of sleep.  "This is normal, right?"  I kept asking the nurses and they assured me it was okay.  You'd think I'd be used to this by now.

A little while later, she was awake and agreeable.  The spunky little Emma with her personality whole and spirit unbroken.  She was asking for watermelons, saying she was feeling hot and kicking off her blankets--a perfect segue into singing off-key lines of Katy Perry's "Hot and Cold."  Later, she had a purple popsicle and asked for a mirror to see her tongue.  This was our Emma; funny and bright.

Doctors had installed a temporary drain, or an EVD in her head.  In simple terms, she is essentially attached to a tube, that is attached to a bag, that is attached to a pole.  It's there to drain the excess fluid, and will be kept in until her body creates its own equilibrium and no longer needs it.  She keeps tugging at the tubing; it will take some getting used to again.  Her incision looks pretty good; she should heal up nicely.

Sleep 

She is sleeping now, finally.  I feel almost guilty about it though.  Emma had been awake since surgery ended at about 2pm, for almost 9 hours.  She was only able to fall asleep for a few minutes at a time.  I tried my best to get her to settle down, be quiet and rest.  At about 9pm I had given up.  I had to sleep myself; my head spinning from exhaustion.  I laid down on a stretcher that was placed for parents in the curtain next to her bed and passed out for an hour long nap.  PACU doesn't have doors, it's just a floor with curtains to separate beds.  Bright lights, busy place, no noise control from staff and other patients, and only chairs to sit on.  Not the ideal relaxation situation.

Emma's throat was hoarse.  She had been intubated during surgery and all of her babbling and singing made for a scratchy little voice.  Her droopy eyes were surrounded by little purple bags, still open.  She was so tired.  I asked the nurse for some more pain medication, remembering that it had been a while since the last dose, and wondering if this was the reason for her restlessness.  With the morphine on its way, I climbed into bed with her.  We were squished together in a hospital bed, covered in blankets, as I tried to hold her, all the while trying to avoid accidentally yanking out her EVD tube.

It was nearly midnight and there were only two beds left in the PACU.  Emma and a little boy named Jarvis across the way.  We were the only two patients without beds, waiting for a coveted spot on the 10th floor. I peeked while the curtains were opened and gathered that he was also a neurosurgery patient; nurses later confirmed my suspicions.  I wonder if he also had a brain tumor.  He had a shaved head with a dressing on the left side, eyes swollen shut from the surgery.  He would yell, "Momma, I can't see.  I can't see," while his sweet mother tried to calm him.  Jarvis had lots of pain.  Poor kid would start screaming whenever nurses or doctors would check him.  He was pretty loud and would wake Emma from her short bouts of sleep.  Tonight, Em was a napper.

I lay next to her, not knowing what to do next, what to say to her to help calm her.  The nurse appeared and pushed some morphine into the IV attached to Emma's leg.  She left and were alone again, separated from the rest of the room behind a curtain.  Mike was now on the other side of the curtain, reading a book or trying to sleep.  One or the other.

Emma put her arm around me and nuzzled up to my chest.  "Mommy," her words began to trail off, and she sighed.  "What's wrong, babe?" I asked.  She sighed again.  "This is not what I thought it would be," she said.  Oh no.  Such a profound statement from a little kid; it caught me off guard.  I asked her to clarify.  "What do you mean?" I asked, feeling terrible; as though I had not prepared her well enough for this day.  Laying in that bed with her, holding her, feeling exhausted, helpless, wishing I could take it all back and make her feel better, I heard her say "the surgery." 

Her body began to stretch and stiffen.  Something was happening.  Emma was now writhing around, and moaning in pain.  I started to panic and called out for Mike.  He was awake and didn't know what to make of it.  Emma was crying and screaming "I want to go home!  I want to go home!"  I felt so horrible.  "Go get the nurse!" I said to Mike.  I put my arms around her and tried to calm Emma.  The nurse came back and tried to do the same, stroking her leg, shushing her.  She said it was probably an adverse reaction to the morphine.  What?  I never thought Em had a problem with it.  The nurse said she probably didn't like the feeling of it taking over her system.  Some children don't like the feeling of being out of control and hence freak out.  

"Shh, take a breath, Em, relax," I told her.  I explained to her that it was the medicine that was making her feel bad and she needed to relax and not fight it.  She finally calmed down and allowed the drug to take over.  In no time, she was asleep.  And I was exhausted.  

What a terribly frightening experience to see your kid reacting to something like that.  Especially Emma; this was not usually how she handled things.  She is tough.  Never cries or whines, she is the ideal patient.  I felt like the worst parent ever, knowing that the morphine was my decision.  Maybe it was the wrong idea.  But then again, she is sleeping now, peacefully.  I hate making the hard calls. 

Overnight

Currently, we cannot get a bed in ICU, as there are none available.  The entire hospital is filled so we play the waiting game again for a bed.  Hopefully we can go directly to the 10th floor for recovery and completely bypass the ICU.  Emma's last surgery in September had us in the same predicament; no beds. We had to wait a long while here in the PACU until something opened up.  I am dreading having to go to ICU.  It's not the best situation for rest.  

The PICU (Pediatric Intensive Care Unit, or ICU) is hard on families.  The swarms of people coming to support the parents and the patients in ICU end in a huge overflow and a packed waiting room.  It is basically a large room with lockers, a kitchen/lounge area and at least 30 reclining chairs that turn into beds for overnight use--better than the plain chair you get bedside when your kid is in the ICU.  But the beds are few and far between and are first come, first served.  People are loud, some want the TV on, the lights on, some don't want to go to sleep when you do.  They are stressed, emotionally vulnerable, tired and not so nice all the time.  If you ever find yourself stuck in PICU, get a bed early, make sure you take advantage of the free coffee, ear plugs, and eye/sleep masks to make your stay more comfortable.  

There is another option if you don't want to do the PICU lounge, and that is the Ronald McDonald House. You probably always thought that the redheaded clown was just a burger slinger, but RMH does so much for families at Texas Children's.  There is an entire wing of rooms on the 4th floor of West Tower dedicated for families to use overnight if their child is recovering in intensive care.  The rooms are fairly bare-bones; just a bed and a shower, but after all of the stress, emotion, and waiting time for surgeries, it is a welcomed relief to very weary parents.

RMH rooms are also first come, first served so you have to act fast once your kid gets a bed in PICU.  We tried that route earlier.  Oh, but wait.  We don't have a bed in ICU.  That's right.  None are available today, so we have to wait around until something comes available.  The entire hospital is beyond capacity apparently.  I should've used our frequent flyer miles and booked a room in advance.  Ha!  I wish. 

By the way, in case anyone actually does reads this, I just want to say thank you.  Thank you to all of the doctors, nurses, and hospital caregivers that have made Emma's speedy recovery possible.  You are all amazing.  Thanks for all you do, everyday. 

Waiting Game

"Wherever it is we're going now, you shall light the way, my sweet--and I shall walk for two."  --Shirley Hong


This weekend was entirely too short.  I felt as though we didn't do enough.  Like we couldn't cram it all in...everything she wanted to do.  Emma begged me to take her to Wonderwild or Chuck E. Cheese, or any suitable "jumping place."  On any other day, I would have.  But it's a big day tomorrow, and we don't need the germs.  Instead we fed the ducks at the park, went to dinner at their favorite restaurants, ordered big desserts, and picked up a few new odds and ends for the upcoming adventure.  We even had an impromptu family photo session.  Anything to keep us occupied.

I spent most of my weekend extremely stressed out.  I tried not to think into the future.  I tried to pack.  I tried to make single random moments into memories in my brain.  I forget them now.  It's amazing what stress can do to you.

"Mommy, can I still be a teenager?"
The girls were arguing over something and that was the question Emma asked.  'Can I still be a teenager?'  It made my heart jump a little.  I hope so.  It's not the way it sounds; they were arguing about something in some odd, childish frame of mind, and it just came out that way.  Nothing to worry about.  But it got me thinking.

Lately, I have been delving into really dark thoughts about Emma.  Making every moment count like it would be her last.  It's really terrifying to live like that.  But the truth of the matter is, I'm scared.  Really scared of what will happen to this child.  Whenever thoughts like this pop up, I squash them, brush them off, and try not to entertain them at all.  It's all been extremely difficult.  I haven't been able to shake this daunting fear about the upcoming surgery.

Sunday we found ourselves at church, twice.  Once for mass, the other to see our priest for a Catholic rite of sacrament: the anointing of the sick.  We try to go to mass weekly and sit in the cry room with our three young children.  Mostly, Mike prays while I chase the baby around and yell at the girls to quiet down.  Needless to say, I don't get as much prayer time as I'd like.  Lately though, God and I have been hanging out.  We talk a lot.  I ask for strength and peace, and He gives it.

We have had Emmy anointed with this sacrament, almost every time before she goes into surgery.  Our priest, Father Clint Bressler of St. Rose of Lima, is such an awesome guy.  Really funny too.  The girls love him, and try to hug/tackle him after each mass he officiates.

Today I was suffering from a major stress headache.  I knew it was stress, as it started in my shoulder blade and radiated along one side of my neck and head and into my eyeball.  Excruciating pain.  It was difficult to think, much less move, yet I found myself waiting in a car at the church parking lot, waiting to see our priest.  The sky was cloudy, yet bright enough to hurt my eyes, and the wind was blowing.  I thought it might rain.  We finally went inside and found Fr. Clint who brought us to the altar and prayed over Emma.  We bowed our heads as he made the sign of the cross on her forehead and palms of her hand with blessed oil.  I tried my best not to lose it, but I couldn't help it, the tears just poured down my face.

Once we were done, I felt this weight lifted off my shoulders.  Emma was laughing; giggling and squishing her oily hands together.  We thanked Fr. Clint, and headed out with a good feeling.  While we walked back to the car, I realized that the pounding pain in my head was gone.  And the sun was shining.  I knew then everything would be okay.  Please pray for a good surgery tomorrow.

Upside Down and Back Again

People ask me how I do it.  As in "how do you keep it together when your whole world is upside down?"  I don't.  It's just pretend.  When no one is looking, I cry.  I scream.  I fall apart.  Then I get up, dust myself off, and do it all over again.  Every day.

So how do you do it?  If you're going through anything difficult, here's what you do:  Fake it, until you make it.  Don't dwell on anything too long.  Don't think too far into the future.  In fact, don't think.  "Stay in the day."  Do what you have to do in that moment, and nothing more.  And pray.  Praying brings you peace, and may keep you sane.

I must apologize (again) for the lack of blog posting.  Truly, it is really difficult to keep up with this blog.  Not only is it hard digging up all of the emotions that I'd like to put past me, but I also have a huge lack of time.  In fact, I had already written this post halfway, and had been working on it for the past two days, when the baby came over and deleted it entirely.  And thanks to Blogspot's terrible auto-save system, I have to re-write the whole damn thing.  Ugh!  So now my goal is just to keep you informed of what you really need to know.  I have a tendency to ramble, so I will try to refrain from that.


Our New Reality
The most recent scans in the past few months have changed our lives considerably.  The latest MRI on January 25th has shown that Emma's disease has spread to a new part of her brain and to part of her spine.  The cancer is back and it's angry.

The scan confirms a new tumor; one which has almost doubled in size since the previous MRI just six weeks prior.  This new tumor was just beginning to show in a scan in late October.  Some doctors were skeptical about whether this spot was just scar tissue, others believed that it was in fact more cancer.  This one is located on the cerebellum; away from the original tumor site (brain stem).

At the bottom of Emma's spine is what has been referred to as a "coating" of sorts.  Kind of how sugar frosts a cookie, but definitely not at all sweet.  It is a frosting of cancer cells towards the end of her spinal cord.  These cells were detected in the November scan, but have remained stable since.  This is good news.  We like "stable."  Recently, there has been no nodular growth, meaning the cells have not yet formed into tumor-like clusters.  Hopefully they won't, but if they do, they will attach themselves to the nerve endings in the spinal cord, causing pain, urinary issues, and other very bad things that we will not speak of.

Through it all, Emmy remains her strong, sweet, vibrant, happy self.  Albeit tired and occasionally sleepy, she is otherwise asymptomatic of her disease.  And truly resilient.  I have been holding out on her, not wanting to tell her that she has an upcoming surgery, for fear of giving her the extreme anxiety that I feel on a daily basis.  So I waited until just a few days ago, and she took the news fine.  I asked if she was scared at all.  "No, I'm fine," she says.

More on that a bit later.  Let's keep on going with the specifics of her medical condition, shall we?


Our Plan
We have a pretty standard treatment plan this time, consisting of "all of the above:" surgery, radiation, and chemotherapy.  This will be a lengthy and exhausting plan.  Surgery recovery will be anywhere from a week or two, then wait two more weeks for healing before starting radiation.  Radiation goes for about 3 weeks, then we wait 2 more weeks to recover before chemo.  Chemotherapy is done is six cycles of 21 days of treatment, so essentially, she's on chemo for about 4 1/2 months, if her little body can handle it.  Oh God!  I just counted this up for the first time on a calendar right now.  Someone tell me I'm wrong, but it looks as though we will finish this entire treatment plan by the end of August.  Great.  Cancer really sucks!

Surgery
Plans to resect the new brain tumor are scheduled for Monday, February 21st, 2011.  The incision site will be in the same place, which will take care of that unsightly and scary bump on the back of her head.

Looking back on my previous blog posts, it seems that I have not accurately described the back of Emma's head.  She has what is called a pseudomeningocele, which is essentially a giant blister filled with brain fluid that measures roughly two inches in diameter, and bulges about an inch and a half to two inches off the back of her head.  It has been there since the surgery in September. The fluid, or CSF, has seeped out from the skull due to pressure build up and excess fluid in her brain (hydrocephalus).  We've been told of several reasons why this is happening.  One is that the fluid is not draining properly because of a blockage (brain tumor and spinal "coating"), another reason is the body is not re-absorbing the fluid properly due to its thickness, a result of the numerous cancer cells floating around in the fluid.  Or, there is some sort of imbalance in the creation and absorption of the CSF.

Okay, back to surgery.  Like I said the incision site will be in the same place, which will take care of that bump.  By entering the same site, the bump will be drained, and the skin will be tightened when the surgeon closes.

The location of the tumor is on the cerebellum, I can't recall if its the right or left side.  Unfortunately, the tumor is located near the cranial nerves, and does not have many delineated edges.  Translation: harder to get a gross total resection, meaning getting all of it out.  Besides the usual risks of brain surgery, Emma is also at risk for the following based on her tumor location: impairment of her swallowing function, deafness in that one ear and cranial nerve palsy--or weakness in controlling her facial muscles.  I pray I see that smile again.

Yeah...not too stoked about what I just said there, but I know she will be fine.  She's in such good hands, God's and Dr. Jea's, that we are not really too bothered by all of this.  What does bother me is just simply putting Emma through it again, and again.  That's what kills me.  How I yearn for the normal.

One other thing, there is a good possibility that the doctors will also install a permanent ventricular shunt to help with the hydrocephalus problem.  I was told weeks ago that they would start with a temporary shunt, and later place a permanent one if she still had problems.  Shunts are very standard and fairly easy procedures, but unfortunately they have high rates of infection.

Surgery itself is expected to last up to 6 hours or more.  Recovery has been about 7-10 days on average.  We expect it to be about the same this time.  The surgery is in place to remove as much of the brain tumor as possible, to yield better results with the follow-up radiation treatment.

Radiation
Much like surgery, radiation is not something new with us.  Emma has had 32 (maybe 36, I forget now) treatments of conformal IMRT radiation to her original tumor bed when she was just 3 1/2 years old.  This was in 2008 at The Methodist Hospital, upon her initial diagnosis.  When her tumor came back one year later, we were unable to follow up with more radiation as it would be too detrimental to her growing brain and body.  At that point, we were only 14 months out from the last radiation treatment and studies show that any re-irradiation within a three year period resulted in unfavorable outcomes.  All we could do was wait.

So with her third recurrence, just 10 months from the last surgery, also known as "surgery 2010" (ha! I'm so funny), we were still in the decision process of what to do in terms of follow-up treatment.  We hadn't yet decided about radiation when we were suddenly hit with the devastating news that her cancer had spread.

Now the plan is to irradiate her focally in the spots where the cancer is located, the brain and spine.  We will be using IMRT radiation as before, also known as photon radiation (not proton).  The treatment course will run about three weeks and they will use a more gentle dose, as they are not able to do full dosages on growing spines.

Honestly, radiation doesn't sit well with me this time.  Our primary hospital, or "home base," is Texas Children's (TCH) in Houston, but because they don't have the machines or the space, radiation is done elsewhere.  We've been back and forth with radiation oncologists from M.D. Anderson's Proton Center as well as from The Methodist Hospital, and both agree that the radiation is not going to be 100% curative.  If there was a place where hope barely existed, it was in these meeting with these doctors.  The general feeling was that the towel had been thrown in.  We heard the words "palliative care" often, and got answers like "it really doesn't make a difference."

After multiple meetings with doctors from both hospitals, we decided that Proton Therapy at M.D. Anderson would likely be the most gentle to Emma's growing body.  When we told our neuro-oncologist at TCH about our decision, we were met with a staggering blow.

"M.D. Anderson will not treat Emma," he said.  What?! Why?  He said he was going to tell us the truth, but we wouldn't like the answer.  "The truth is, the Proton Center is overbooked.  There are too many patients wanting treatment there, and they reserve the appointments for the patients that have the best chances of survival."  He was right.  That was a crappy answer.  Didn't like it one bit.  This was really just too much for me.  I am angry about it, but not sure if I want to spend my energy and emotion on pushing them to treat her.  I don't have much fight in me left right now.

Our doctor at Methodist is wonderful, as is the staff.  Emma is familiar with them and feels safe there.  My only hesitation is that we've done this before and it didn't work.  The cancer came back when the radiation should have been a cure.  Sorry.  I don't want to talk about this issue anymore.  It's too draining.  I hope you understand.

Moving on...

Chemotherapy
Here's a place I am unfamiliar with.  We've never been down this path before and it's pretty daunting.  We met with our oncology team at Texas Children's back in November regarding the idea of adding chemotherapy to Emma's treatment plan.  It was a long meeting at in the end, I was ill and completely defeated.

That same day we met with the clinical trial team, who gave us the option of enrolling Em in a clinical trial instead of standard chemotherapy.  Putting Emma in a clinical trial meant that the drugs given would still be in the testing phase.  Like child-size lab rats.  Nice.  Seeing as to how I'm a stickler for the amount of Tylenol I give my kids, I decided we should opt out of this one for now.

Dr. Jack Su, our neuro-oncologist, presented us with a protocol based on clinical data from the Children's Oncology Group, or Curesearch.  Nice to see Curesearch in action.  This is a pretty standard but aggressive plan.  It consists of three chemotherapy drugs, and two additional drugs to counteract the toxic effects of the chemo drugs.  Too many to keep up with.

The chemo drugs are Etoposide, CISplatin and Cyclophosomide.  Aside from the hair loss, nausea, and general malaise, other side effects may include vomiting, lack of appetite, permanent hearing loss, diarrhea, bleeding of the urinary bladder, infertility, kidney damage, fingers and toenails loosening from their nail beds, chest pain, and new cancers or leukemia resulting from treatment.  Diarrhea is for sure.  Hearing loss is for sure. It's also very likely she will bleed when she pees, so we take another drug that coats her bladder and reduces the amount of blood in her urine.

I can't help but feel for those other kids who have already been through this chemotherapy thing.  I don't know how they get through it.  I don't know how I will get through it.  Not looking forward to this, that's for sure.

From what I remember (that meeting was so long ago), chemo is given in 21-day cycles, and repeated continuously for six cycles or however much Emma's body can handle.  This means every three weeks, Emma will be hospitalized for the first three days of infusion, or when administering the drugs.  This is done to monitor her, in case of any severe allergic reactions to the drugs while they are giving it.  For the first week, she will feel like crap, then a little better the next week.  She will finally feel her best the third week, only to be hit again with a new cycle the next week.

In addition to being inpatient for those three days every three weeks, Emma is also subject to tons of lab work, also known as blood draws, or what Emma lovingly refers to as "pokes," to check her counts.  Chemo not only kills the bad cancer cells, but also kills the good cells as well.  Fewer red blood cells can make your body feel weak and tired.  Fewer white blood cells reduces your body's ability to fight infection, and fewer platelets may cause you to bruise and bleed easier.  Checking the blood and counting these cells gives us a better idea of when Emma is at a higher risk for infection, and whether she should receive additional drugs to boost her white blood cell count.

This is all a part of the daunting, new language I have to learn.  Chemo is expected to begin a few weeks after radiation, and continue probably through August.  The reason why we never did chemotherapy to begin with, is that it is not effective for Emma's type of cancer.  In fact according to current data, there is only a 20% chance that this treatment will be curative at all.  But we hope and pray that Emma has not read the play book.  That she will beat the odds.


A Lost Tooth
After all this, it is easy to lose sight of the regular stuff.  Emma lost her first tooth on the last day of January.  It was such a spectacular moment.  Two new teeth were coming in at the same time, and while eating pizza in the car on the way home from the hospital she asked "Mommy, what happens if I lose my tooth?" I told her that the tooth fairy would come and give her a prize. Then I asked why, and turned around to find her holding a little white tooth in the palm of her hand.  She giggled with excitement.

I was so happy.  Emma had made it to another milestone.  I cherish these normal events in her life.  A while back, I stumbled upon a blog of a boy who fought bravely and lost his battle with neuroblastoma.  His name was Max and he was 7.  And while I read this painful recount written by his parents of the night he died, only one thing stuck with me, as his sister said goodbye "she said through her tears, 'He didn't even lose a tooth.'"  That really got to me.

I would inspect her mouth constantly, waiting for something to wiggle, watching as all of her friends smile their gap-toothed grins.  I tried to bury what I had read on that blog, but it always managed to find its way out.  That day, I cried silently in the car out of joy and thanked God for this precious little gift.

Asking for Prayers 
If you pray, please ask God for the following.  Please give us peace as a family.  Give us strength.  Guide the doctors' hands during surgery and lead them to make the right decisions.  Protect Emma from pain and discomfort.  Protect her from any fear and anxiety.  Please pray that her recovery go smoothly and that she will be well very soon.

Please add anything else that you might feel is pertinent.  That's all I can think of right now.  My mind is in so many places, I can barely keep it together.  It's been extremely hard to breathe lately, and staying calm is merely a wish.  But I have faith that God is with us.  He's on our side.  I just know it.  I'm praying.

I'm bracing myself for the wave, and ready to swim back to shore.

Down, But Not Out

That's our motto here. We are keeping it hopeful, and keeping it real at the same time. Hard line to walk. If you are out there listening, reading this, I ask you to please keep Emma in your prayers every day. I know you might already be doing that, but we need them so much right now. Every little request for God to heal her. Please take away all the cancer in her body and make her whole. Please let the scans be clear on Monday the 15th. We need them to be clean and cancer-free!

I've been trying to write this blog post for a week now, but somehow everything gets in the way. It's always something. So here are the details, if you are so inclined to read on.

Spinal Tap, or Lack Thereof

The Thursday before last (11/4), was a long day. We were scheduled to come in early, meet with oncology, see ophthalmology, then get a spinal tap, or "lumbar puncture" for Emma to see if any cancer cells had spread to her brain fluid. It didn't really work out according to plan. Emma did not have her spinal tap at all. It was cancelled due to scheduling conficts and instead we met with oncology for almost three hours.

I love our oncologist, but I hope he's wrong. His opinion is that the "spot" we are watching is indeed a tumor. He said "I would be surprised if it wasn't a tumor." The reason being that it has a very defined shape and doesn't look like most normal scar tissue--please be scar tissue, please, please! But he also said he is happy to be wrong. Let's hope he's wrong. Pray for it!

The "spot" (sorry, I just can't call it a tumor) is in a different area of the brain this time. Not the brain stem, where it has recurred before the past two times, but in the cerebellum. We took a look at the original scans vs. the scans from a few weeks ago, and you can see that the "spots" almost match. The original tumor in 2008 was enormous, the size of a baseball. This new "spot" is very small, maybe pea-sized, but lies in the same plane as part of the old tumor that was removed. Unfortunately, doctors won't treat it like a recurrence, but a metastatic tumor, meaning one that has spread. This changes the game plan entirely.

If our MRI on the 15th confirms growth of the "spot," then we will have to do full radiation to the brain and spine after surgery. Though we don't have all of the specifics just yet, we have been given our options for post-surgical treatment and are exploring them. We have already met with a doctor that works with Phase I and II clinical trials to get the information on that option. (Not a great option, but at least its there.) In the next few weeks following the MRI, we have meetings with radiation oncology set up again.

There's another thing I haven't mentioned yet. Remember that fluid-filled bump on the back of Emma's head? The pseudomeningocele? Right, well, there is a possibility that the reason it is not flattening out or draining down into the spine may be because of a blockage. You see, brain fluid (CSF) circulates around the brain and down into the spine and back again. In Em's case, the CSF is moving, just very slowly. Slow enough to allow the fluid to pool into the little bump on the back of her head. The possible blockage could be caused by scar tissue, thickened fluid, or worst-case, a tumor on the spine. A spinal tap or spine MRI is the only way to really tell. Sigh.

So the plan is this: We have a scheduled full brain and spine MRI on Monday 11/15, and see what is going on in Emma's little body. Depending on results, we will either do a lumbar puncture (spinal tap) to check for cancer cells in the fluid, or not. The spinal tap all depends on whether or not the spine scan shows any tumors. If they can see something visually, they will spare her the pokes. Worst case scenario, Emma has surgery a week later to remove the recurrent "brain tumor." A week later, we begin radiation therapy, then whatever else we've got to throw at it.

I have to say, all this talk of something that I know is not there really winds me up. I'm not hopeful, I'm positive. Positive that she will be cancer-free. And this upcoming scan will confirm that. I know I'm right, I've got to be.

Birthday Week = Rough Week

So my goal going into this week was to avoid hospitalization. Good goal, don't you think? We were looking forward to Emma's 6th birthday on Saturday the 13th. As part of her birthday gift, I was going to take her to Disney On Ice, Princess Wishes and she was very excited. Just me and the girls--Mike was out of town at a national sales conference until Friday (not fun with three kids).

But by Monday, we were all upside down again. Em had been vomiting again with a low grade fever over the weekend, so I called the oncology nurse. I got a return call asking me to check her into the ER again. At first I was going to do it. But then the Mom in me decided that my little girl needed to have a good birthday week, without hospital involvement. I called back and was adamant about not checking into the ER. So we saw the Dr. Su at the Cancer Center instead-we were seeing the Phase I doctor and had therapy later on anyway. Dr. Su agreed with trying to give Emma a "normal" week, as long as her body permitted. He sent us off with a prescription for an antibiotic for her mild ear infection--probably the cause of the fevers.

We trudged on. On Tuesday, she attempted to return to school for a half-day. I wanted her to be in school all week, because on Friday the class was going to have a birthday celebration for her with cupcakes and photos of her on each year of her life. She was going to share stories of her life's adventures thus far. It would've been lovely.

Falling

But by lunchtime, around 11am, something happened. I got a phone call. The number on my cell was from the school; when I answered it, the nurse gave me the news. Uh-oh. Emma had lost balance and had fallen off the chair while having lunch in the cafeteria. She fell backwards and hit her head, right on her bump. Great. Fortunately, the school nurse is an ex-pediatric neurology nurse who worked in the brain tumor clinic at Memorial Hermann. (I'm pretty sure that is the right hospital.) I can't tell you just how wonderful it is to have your school nurse know exactly every detail of Emma's health issues and understand them fully. It's so cool! We are very blessed.

Nurse Chapin told me that Emma seemed to be okay, but her concern was the size of the bump on the back of Em's head. Emma's teacher, Ms. Blanco, later confirmed that although it was a huge bump, this was a normal size for Em.

I got there ten minutes later and Em was back in class, sitting a desk with her lunch tray, but not eating. She looked exhausted, droopy-eyed and pale. I apologized profusely to her, wishing I had never sent her to school that day. I held her tightly, kissing her head, telling her I was sorry. She stared to squirm and in an instant, she was vomiting. Fortunately, I move pretty fast, so I had her vomit into the trash can instead of all over the floor. It was really hard to watch her friends see her getting sick. Thankfully most of them were unaware and were in a lesson with the teacher. My heart was heavy; I so wanted her to be one of those healthy kids sitting on the rug happily listening to a storybook, instead of vomiting into a trash can.

I took her home to rest and the vomiting continued through the next day. By Wednesday, she was worse off than I had imagined. Poor thing. She couldn't lift her head off the pillow. All day long she tossed and turned and never got comfortable. Her vomiting was getting more consistent and frequent, as was her pain. She began to get more lethargic and sleepy. She took four naps that day; a far cry from her usual "I'm not tired" routine. I felt awful for her, knowing she was in so much pain and there was nothing I could do.

Birthday Princess

By the evening, she was too sick to go to the Disney Princesses she was so eager to see. I was heartbroken. The event was for both girls' birthdays. Hannah and Emma are exactly two years and one week apart. Needless to say, combined parties are the norm around here. Hannah was just as excited to see the Princesses as Em was. I tried to talk her out of it since her sister was sick, but I was met with crying and tantrums. I felt bad. What do I do? Take one, and not the other? Abort the mission altogether? After some consultation with friends and my mother, I decided I would only go if it was alright with Emma.

"Hey Emmy," I asked, "is it okay if I still go to see Princess on Ice with Hannah? Will you be too sad?" She looked at me with her tired eyes, and said "yeah, it's okay Mommy. It will be fun." Guilt was eating at me as I got up to go. I felt awful pretty much the entire time. On the drive there, I called Dr. Su to update him on Emma's situation. He said that by the looks of her on Monday, he had suspicions that we might be back later that week. He told me to bring her into the ER where they would do another head CT to see what the hydrocephalus was doing to her brain. They would probably also do a temporary shunt to relieve the pressure build up.

I felt awful. Was making the decision to keep her out of the ER in lieu of a good birthday week the wrong one? I've looked at it in so many ways, and I am really convinced that every birthday should be celebrated. Every birthday. I never want to regret missing one. Still, I am conflicted daily with having to choose between a normal life for my daughter, or one lived in the hospital. For now I choose normal. As normal as we can get. And I will do this until I don't have a choice anymore. I hope that's the right call.

I will admit it was good spending that time with Hannah, to see her face all lit up with excitement and joy. But I missed Emma a lot. I couldn't help crying during the Ariel part. Emma loves mermaids and this act was so cool, she would've enjoyed it so much. When I got back home to her, she was so listless that she wasn't even interested in the souvenirs or photos I took for her. I was debating on whether or not to take her to the ER that night or in the morning. Looking at her resting so soundly, like a true sleeping beauty, I decided to wait.

Photo of the Day

Just messing around with Google's Picnik, and I thought I'd share. This was in April of this year.

Mermaids, and Crabs, and Brain Fluid, Oh My!

Happy Halloween 2010! It's been such a whirlwind around here since Emma's surgery in September. She is slowly recovering, but not without incident.

Scary Stuff

Since surgery on September 15th, she's had two CT scans and one MRI to take a closer look at the bump on her incision site. Doctors have decided that it is a pseudomeningocele--a collection of brain fluid (also known as cerebro-spinal fluid, or CSF) under the skin. This comes from leakage from the the burr hole in the bone due to pressure from coughing or vomiting, both of which she has been doing since surgery.

I don't think I ever explained the specifics of her surgeries, so in the gory spirit of Halloween, let me elaborate a bit. Essentially, they open the skin, with a six inch incision from the nape of her neck to the middle of her head. Next, they drill a small burr hole in the skull, and cut a small square flap of bone which is then removed to access the brain. They put her all back together again and usually she heals very well, with no problems. This time, she caught a virus which caused her to cough and vomit, causing pressure in the head which pushed fluid out from the skull that has yet to fully heal.

Scans, Scans, and More Medical Jargon

Emma had nightly high fevers almost consistently for 4 weeks. The CT scans were done to make sure that the vomiting was not from increased pressure in the brain (hydrocephalus). At the time, she was fine. No brain swelling. She was also subjected to lots of tests--blood cultures and labs, urine cultures, etc. Still they could not determine what was causing the fevers. I was told it was a virus.

Early on Monday morning (10/26) I made a call to our oncologist to find out the results of some blood work that Em had done that Friday before. I told them she was still experiencing the high fevers over the weekend, and we were asked to come into the ER to get an MRI and do more lab work on Emma. We were admitted that night for what was to be a short stay. A little more than 48 hours later, we were sent home.

The MRI results were not nice. It showed that there indeed was excess fluid, known as hydrocephalus, in the brain, and that Emma's ventricles are enlarged because of it. Our neurosurgeon went into some detail regarding the scan. Aside from the enlarged ventricles and excess fluid, Emma's brain fluid is also somewhat thicker--what that means, I don't know, but it doesn't sit well with me. The hydrocephalus causes vomiting and sleepiness. The extra pressure in her head has also been causing her pseudomeningocele--the fluid-filled bump on her incision site--to swell. The bump is the size of a lime, and looks pretty scary.

Then there's the "new spot." A new spot we have to watch.

Yeah. When I saw it, I felt sick to my stomach. At this point, we are not sure what it is. It could be scar tissue, blood product or changes in the brain resulting from surgery, which was just 6 weeks ago (at the time). Good news is that it is not located on the brain stem, but on the cerebellum. Bad news: its very symmetrical and measures about 8mm in size. Ugh. Hopefully it is nothing. Our next brain and spine MRI is scheduled on November 15th, and if it has grown, then we have our answer.

Emma was treated with antibiotics, and given a medication that should help reduce the hydrocephalus. It's been a little over a week now, and while the size of the bump had reduced while she was in the hospital, it has since become larger. Though she is not vomiting or complaining of headaches much, and the fevers have subsided, I can see that she is still tired.

Our doctors are considering placing a ventricular shunt to help drain the fluid if the medication is not effective enough. A shunt sounds scary. It involves creating a burr hole in the skull into which a tube is inserted. That tube is then run under the skin, down the neck and into the stomach where it drains out. I'm sure its not as bad as it sounds, but it is permanent. And I'm sure it will hurt.

The Thursday Marathon

This Thursday, November 4th, will be a long one. Aside from an early meeting with our oncologist to discuss treatment options, getting blood labs drawn, and meeting with her ophthalmologist for an eye exam, there is also a Lumbar Puncture scheduled.

Also known as a spinal tap, fluid will be drawn out of Emma's spine to check for cancer cells in her CSF. The procedure is similar to an epidural, for those of you familiar with childbirth. FYI, the same fluid that flows through the brain also cycles through your spinal column. It is not uncommon for brain tumors to drop seedling tumor cells into the fluid, where they are free to float around and attach and grow to different parts of the brain or spine, spreading the cancer. Not fun.

I tell you honestly, we are pretty shaken by all of this. Mike and I are holding steadfast, trying to make it day after day. We try to give Emma every opportunity to be a happy, normal child. But I tell you, I am weary. I think the emotional stress has finally caught up with me after all these years. I feel like every time the tumor comes back, it knocks me down again and again, making me just a little bit weaker every time. Please pray for strength...for me and Mike and especially Emma. I hate that she has to endure this at all, but sadly, this is what she knows. It's her "normal."

Happy Stuff

On the plus side, Emma has been in pretty good spirits. She has gone back to school for half days lately, though her attendance is pretty terrible with all of her medical issues and weekly therapies. I think in the past two weeks, she's only been to school a total of 4 days. But she loves it and is glad to be there. I take her home early for therapies or to rest. She has very limited energy and can only endure so much schooling. What a way to start Kindergarten, huh?

She was really adamant about going to the Fall Festival at her school, so we did. She only lasted a few hours before becoming too exhausted, poor thing. It was a lovely day, all the kids in costume and great weather. Although there was no participation in bouncy houses or anything too physical, there was an overwhelming eagerness to throw balls and dunk Mr. Diaz, the Vice-Principal, in the dunk tank. Go figure. She missed of course; throws like a girl. I think she loved the hay stacks the best. (I have photos which I promise to fill in here, later.)

I guess I should tell you what they were dressed as for Halloween...Mermaids. Emma was a mermaid, of course. As was Hannah. And the baby? I couldn't resist dressing him in something that will forever embarrass him...a crab. I figure this is likely the only year where I can choose his costume for him. So I went with a theme.

Behold, the two mermaids and the crab...and the "cheesy" smiles.

How to torture your baby...put him in this costume and take his picture.

Halloweening with our Superhero friends.

And a little piece of sushi, too. :)

Halloween night was so tiring, but was spent with wonderful friends. Emma was very happy. She started off with some energy, but couldn't endure trick or treating like other kids could. Halfway down the block, she had to sit in the baby's wagon and get pulled around. That's okay; it was the best way to eat candy while on the road. She was quite content to just let Hannah bring her all of the treats.

In Conclusion
Thanks for your understanding as to why I don't update this blog often anymore. Lately, I have been too overwhelmed and exhausted with everything to be able to sit down and write (which is why this post is pretty uninspiring.) The truth is, most of the time I can't make it through the tears to finish a blog post. Nothing is easy. Everything is stressful. We take it day by day.

Please continue to send prayers for Emma. We are so grateful at the love and support we receive from everyone. Thanks so much. Please pray that her spinal tap goes well and the results are good! I really do feel like she is getting better daily. Even though its taken a longer time to heal, she will indeed heal.

I haven't said this in a while either, so I'll remind you kindly...take some time tomorrow to cherish your children and the ones you love. Just stop. Take one moment out of your busy day to see them with your heart, listen and love them. Don't forget that feeling...ever.

FW: Emma Update 10/29

Our friend Bill has updated some of you via email. Please send your thoughts and prayers Emma's way. Thanks Bill, we love ya!

---------- Forwarded message ----------
From: Mike
Date: Mon, Nov 1, 2010 at 9:26 AM
Subject: FW: Emma Update 10/29
To: Jayne

Our friend Bill is doing a good job keeping people updated and generating prayers for Emma. See below.

--Mike

Sent: Monday, November 01, 2010 8:46 AM
Subject: FW: Emma Update 10/29

KEEP THOSE PRAYERS COMING !!

Keep the Maltbie's in your prayers this weekend - they've got some serious tests to go thru next week with Emma. She was admitted Monday for fever and pressure on the brain. The MRI showed a spot on her cerebellum away from the surgery site, that could either be a shadow, a residual blood spot from the surgeries, or another tumor. The slight fevers persist, but she was released on Tuesday. Next week more tests will be administered to determine the nature of the spot and to monitor the pressure.

She's also scheduled for a spinal tap to see if there are any cancerous cells floating around in her spinal fluid. To treat the brain pressure they have put little Emma on diuretics to keep the fluid from building up. If that fails to control it, she will have a tube implanted behind her ear, run under her skin and divert the fluid into her stomach. Yuck. Let's hope they find a solution.

The family is resilient, and the Maltbie's are planning to have a busy Halloween weekend. Emma's in good spirits, and the family is positive that the prayers will see them thru. Please take a moment this weekend to pray for them.

--Bill