No doctor is better than three ~ German proverb

Waiting for Monday to talk to the only doctor who would be making the decision about the tumor was making me crazy.  Several nurses offered me their opinions of the neurosurgeon which all basically summed him up as a rock star among surgeons.  Back then it was just driving me crazy but now I know why no one else ventured any form of diagnosis, prognosis or even an idea of a treatment plan.  See brain tumors are confounding little things.  Doctors who specialize in them will tell you that typically they aren’t even classified as “benign” or “malignant.”  They are graded from Stage 1 to Stage 4 based on how aggressive they are.  And… only the neurosurgeon can tell you if they can be operated on or not.  Teagan’s wasn’t invading any major structures or components of her brain, but it was sitting “very close” to a major blood vessel.  In a 5 year old’s brain I’m not sure what “very close” means but I’m guessing micrometers.

We had a lot of visitors, both friends and family, over the weekend so I had a lot to distract me.  Teagan asked me why she had to stay in the hospital and I told her that she had a bump inside her head.  “How did it get there?” She asked.  “I don’t know.”  That was the only thing I could tell her.  Because let’s face it if I knew why she had become one of the 36 kids diagnosed daily with cancer or how one of her astrocytes in her brain got it’s DNA scrambled and started a tumor I would be a world-famous researcher with lot’s of fancy letters after my name like PhD.  I have since read that when talking to your child about their medical condition its best to be honest and upfront and to use proper terminology and not words like “bump” and “pokey thing” and “finger light.”  Oh well….. it’s not like it’s the first time I did something that didn’t coincide with the proper way to raise your children.

Sometimes I think I was walking around in a fog the whole time during the days we were there.  Then at night the fog was lifted (both the nights I stayed there and the nights I can home).  Mostly I just didn’t sleep.  But anyway…. On Sunday we were pretty bored and one of the nurses brought us a wagon and asked if we wanted to take Teagan for a ride.  We weren’t supposed to leave the PICU – that would have been a handy instruction to have before we left her room.  We took her downstairs, over to the main hospital, to the place she still calls the “fountain room” which is a huge marble fountain with brass wildlife and a nun (maybe 2 nuns) and to the cafeteria.  We passed a lady somewhere along the way who had that “I’m-smiling-because-I-feel-sorry-for-you” look and I just smiled back.  I didn’t really understand why she would feel sorry for us, she couldn’t know what was wrong.  Then about midnight it dawned on me.  Teagan was now one of the kids in the little red wagon.  When Dawson was 9 months old he was sent to Riley Hospital with a respiratory virus.  We had gone to a local ER and the hospital would have been able to take care of him but we had an odd pediatrician back then who made them send us to Riley.  That was my first introduction to a children’s hospital –  which despite all the bright colors and cute decorations are really sad places when you look at the number of children facing debilitating or incurable diseases.  During that brief stay at Riley I learned one thing — I was thankful that my child wasn’t one of the kids in the little red wagons.  You see the little red wagons are usually reserved for the really sick kids, like the ones with cancer or ones who have cerebral palsy and cystic fibrosis.   It took me until midnight to realize – now I was one of the parents of one of the kids in the little red wagon.

Yeah I’m pretty sure that my light is more like a flickering fluorescent and not a 100 watt incandescent.

Once we finally met the surgeon, Dr Young, I could see why everyone gave him rock star status.  I had thought long and hard to have a list of really intelligent questions to ask him.  That did not go well.  He scheduled us for surgery and explained it was just easier to remove the tumor and then determine what it was rather than use a small probe to do a biopsy and then have to do surgery too.  He explained how he would make the incision along her hairline so it wouldn’t be noticeable and he would drill a whole about the size of a nickle into her skull and then remove the tumor.  He said the skull would take about 6 months to repair itself and there would be no stitches to remove from the incision.  Whatever “intelligent” questions I had thought of (and I think even written down) suddenly didn’t sound so intelligent when I was talking to a man who was going to drill a hole in my daughters skull and dig through her brain to remove a tumor.  Luckily the impact of that conversation also didn’t hit me until way later in the day.  That same day I also met a very soft spoken young female doctor from the oncology center who spent a long time speaking to us and taking a lot of notes.  I didn’t know it then but she would become my “go-to” doctor.  The doctor who made me feel better every step of the way.  The doctor who had just finished her residency and Teagan would be her first brain tumor patient who would call and say “This is Jessica…uh… Dr Goodman.”

Dr Young may be the rock star but Dr Goodman is the rock.  Without both of them this story has a different ending.

Next: You’re in pretty good shape for the shape you are in. ~Dr Seuss

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A disease known is half cured ~ Irish Proverb

Remember how I said that there were things that are vivid memories and some things that are a complete black hole when I start thinking about these things?

Four hours after finding out that my daughter had a brain tumor these are the things I remember:

We had a nurse named Julie who got us checked in to PICU who explained more than the neurologist did.  Teagan wanted “Tiger Cereal” (Frosted Flakes) when she got to her room.  Dr. Potts and the doctor assigned to PICU came and talked to us and told us that they had to wait for the neurosurgeon to return on Monday before anyone told us a course of action and next the floor doctor took Dave outside and showed him the MRI with the golf ball size tumor sitting deep into her cerebellum and dangerously close to a major blood vessel.

What happened to Dawson?  I have no idea…..  I don’t remember talking to him or if I explained anything to him or if Dave did.  When Teagan decided that she wanted her daddy to stay with her at the hospital that night I remember taking Dawson with me.  That was nearly 4 hours after we found out what was wrong.  He was nine years old and his sister was in the hospital and every nearly every family member we have was at the hospital and I don’t remember talking to him for four whole hours.  I can’t imagine what was going on with him.  He had to be scared — terrified, and there was no mom.

Once I found my car — St Vincent was a giant maze at that time for me and the car was on one side of the hospital where we entered and she had been admitted to Peyton Manning Children’s which was attached but on the other side — Dawson and I climbed in the car.  “I can’t even look at her little car seat.”  he said.  (Sigh) “Do you want me to put it in the back?” I asked.  “Yes.”  So I got out, took the car seat and put it in the back.  I vaguely remember telling him that everything would be OK.  At some point I agreed to get him a cell phone so even if he was with a relative he could call Dave or me at any time.

When we got home he asked if he could sleep with me and we climbed in bed.  He fell asleep right away.  I watched the Disney channel until the news came on, then Jay Leno, then Conan, then poker, then the news replay.  It was 3 o’clock in the morning.  I wanted to call Dave but I figured he was asleep.  I ended up sitting in the middle of Teagan’s room holding Waffle (her stuffed cat) surrounded by little pet shop toys and her soccer uniform she had gotten out and sobbed until I about threw up.  I know that the doctors and nurses who we talked to that night had reassured us that having a brain tumor didn’t mean that she was going to die but obviously as a parent that option was still lingering in my head.  That night, the first night was the only time I let myself think about what would happen if she died.  From that point on I never let myself think about that again.  It was there in the back of my head but I shoved it back there and buried it.  I’m pretty good at that because I’m married to a firefighter – you know the danger is there when they go to work but if you think about it the whole 24 hours they are gone you would go nuts. (Of course now he drives the “Fire SUV” so there is less danger – unless the A/C goes out 🙂 — oh you know you think I’m funny honey)

I finally did sleep.  Dawson had to be at football in the morning and I was dropping him off at Dave’s parent’s house before going to the hospital.  The family had decided that everyone would go to Dawson’s football game that morning before anyone came to the hospital.  Before I dropped him off I bought him a pay-as-you go cell phone at Wal-Mart.  I went to the hospital and left Dawson at Dave’s mom and dad’s house.  I really think I would liked to have seen the scene (and I’m sure it was a scene) at the football game.  Grandparents and aunts and uncles and cousins all there to be supportive for Dawson — some were telling all the other parents what had happened (I know because after the game is when my email started blowing up).  There were 3 grandparents, 4 aunts, 2 uncles and 3 cousins – twelve people all vying over Dawson.  He probably loved it.  I wonder if any of the parents from his team has a video of that game….. I should’ve asked.

One of the most important things for me that happened that day was once I got to the hospital we got a phone call.  It was one of the police officers that I worked with asking if he could come and visit.  When he got there I suddenly felt good or at least hopeful.  This particular officer had been shot earlier in the year on a traffic stop.  Not once or even twice, but five times and one of the bullets struck just under his vest and went into his abdomen.  He spent weeks in ICU.  One of the shots had gone into his leg and he spent months in physical therapy and had to use crutches or cane for a long period of time.  That officer and his wife were the fist visitors we had at the hospital.  He walked in to Teagan’s room.  Let me say that again for emphasis.  He WALKED in to Teagan’s room.  He – who had been shot 5 times including to the leg and abdomen just 6 months ago – walked in on his own power with no crutches and no cane and no assistance and no feeling sorry for himself about what happened and came and talked to Teagan.  Seeing him made me feel hopeful that this would all turn out OK one day.  Seeing him reminded me instantaneously that strong-willed people are survivors — and anyone who knows my daughter knows she is strong-willed.  I don’t think I’ve ever told him thank you — because he made the biggest impact on changing my attitude.

Next:  No doctor is better than three ~ German proverb
(PS I’m running out of proverbs!!)

Bad is never good until worse happens ~ Danish Proverb

845 AM September 7th, 2007 Teagan and I walked into the doctor’s office.  We did all the usual things like height and weight and blood pressure and temperature.  I explained to the nurse not only the story of how she fell when she did a cartwheel but the balance and coordination problems we’d been having as well.  She took a few notes and we waited for the doctor.

Once the doctor came in he started asking questions and checking things like squeezing hand and hopping on one foot.  The growing look of concern was not doing anything to alleviate my level of panic.  He then said he needed to check with a neurologist that he knew and he would be right back.  Yeah –neurologist didn’t sound good.  Trying to maintain a calm façade for Teagan was not going well but in all honestly I’m pretty sure she knew something wasn’t right and had known for a while but when you’re 5 it’s not easy to describe what’s wrong with you.

I vaguely remember the conversation with the doctor explaining that she needed a scan of her brain done.  I’m pretty sure there were explanations of why and what they wanted to “rule out” but I don’t remember any of it. All I saw was a look of panic on the doctor’s face and that was enough for me to know it was bad. I remember being told they were setting up an MRI at Peyton Manning’s Children’s hospital and the doctor asking me where Dave was and could I get a hold of him.  I guess my façade of calmness was not really working at this point.  Dave was at work.  So I texted him to say I needed him to come to the doctor’s office.  I didn’t want to call him because I didn’t want to explain things in front of Teagan.  Well that didn’t work because Dave ended up calling me because he didn’t understand why he needed to be there for an MRI of her arm.  I guess he was still working on the dislocated-something-or-other in her arm theory.

When Dave got there we were given instructions of where to go and what time to be there.  Unfortunately because she had eaten breakfast and she would have to be sedated to do the MRI we had to wait until 4pm.  So we went home.  To wait for HOURS with a child who only knew she wasn’t allowed to eat lunch so suddenly she was starving.  I remember calling in sick to work and babbling to Mike about what was going on.  Staying home didn’t last long because every 5 minutes Teagan wanted a snack.

We did something really stupid, but I think we did it out of sheer desperation to hang on to “normal.”  She was supposed to start soccer that night and she didn’t have any shin guards so we drove to the mall and bought shin guards.  I guess I thought that after the MRI we would go home and she could go to soccer that night.  Going to the mall was a distraction for a while until Teagan saw Chick-Fil-A and McDonald’s and the crying about being hungry started over.

Finally it was close enough to the time we needed to be there that we went and picked Dawson up from school.  He was in his 3rd grade class doing Math and was beyond excited to get out of school early.  On the way from the school to the car I tried to explain that we had to take sissy to the hospital to “take pictures.”  He wasn’t that concerned because he’d had an X-ray before and they had referred to it as “taking pictures.”   The whole way to St Vincent he was telling us how his day was at school and he was super excited not to have to stay for Math.  I remember Dave being on the phone several times during the trip up there to various people, but I don’t remember calling anyone.  Did I?  What did I say?

That’s the odd thing about this day.  I have very vivid memories of some of it.  And other parts are a complete black hole.

I remember that Teagan fell asleep just outside the MRI room before they even administered the anesthesia.  The nearly 8 waiting to do the MRI had just been too much for all of us.  I know while she had the MRI we were in the waiting room and more and more family members showed up but again I don’t remember calling any of them or what was said to them about what might be wrong with her.

We found out 45 minutes later.  When we walked into the recovery room the nurse told us it would be a while before her room was ready.   Dave gave me a puzzled a look and mouthed “her room?”  I shrugged.  Then the nurse looked at me.  That’s when I knew it was really bad because she looked like she was about to cry.  She told us that the neurologist was on the phone for us – we never did meet him in person.  Dave would still like to punch him in the nose.  Which is probably why we’ve never met him.  He told Dave that she had a golf ball sized tumor on the right side of her brain and she was being admitted to the hospital.  That was it – no apology for not being there in person or instructions on which doctor would see us next or anything.    I actually found a glimmer of hope because of the shortness of the conversation – that Dave was going to say everything was fine.

Dave came over to the side of the cart where Teagan was still sound asleep  and told me exactly what the doctor had told him.  To say I “lost it” would be an understatement.  Not the “lost it” you see on TV where people fall to the floor or scream or whatever – but I was sobbing so hard I was shaking.  Dave was doing good until he went out to tell the various family members in the waiting room.  That’s when he says he “lost it.”  I don’t know because once I could breathe again I stayed in the recovery room with Teagan.

Next:  A disease known is half cured ~ Irish Proverb

“Beginning is easy – continuing hard.” — Japanese Proverb

Where to begin?  The most obvious choice would be to start on September 7th, 2007.  That’s where the actual “Cancer Story” starts.

But it really begins before that.

It all started with a pair of flip-flops.  I know that sounds stupid but a pair of flip-flops is what should have been the sign there was something wrong.  They were pink with a chunky heel that had a light blue stripe and a multicolored ribbon for the strap.  She thought they were great.  We went to the car and she walked out of the left one.  We got out of the car in the parking lot of Target and she walked out of the left one.  We got home and … yeah she walked out of it – I figured you would see the pattern.  This was in May 2007.  I chalked it up to being uncoordinated.  When B was trying to teach her how to bat she had trouble holding the bat with her left hand and B showed me that when you have her squeeze your hands the left doesn’t squeeze as hard as the right.  I had her squeeze my hands and there was a difference but it didn’t seem like a huge problem.  Dave did the same thing.  We shrugged.  Should we call the doctor?  The answer should have been yes.  But we decided just to “keep an eye on it” because maybe she had trigger finger like Sara had when she was little.  This would be where the GUILT starts.

I know hind sight is 20/20 and I know that something like not keeping flip-flops on your feet or a small difference in squeezing hands doesn’t shout “YOUR FIVE YEAR OLD HAS A BRAIN TUMOR!” but in my mind now — it should have.  There were other things too, like going backwards in ability at gymnastics class.  She had been so close to doing a cartwheel and then it starting getting harder and harder instead of easier.  When you think of something like a life threatening illness you expect the signs to be a bit bigger.  Like instead of a small black and orange “open” sign in the window you expect there to be a giant blue and pink neon flashing sign.  This would be RATIONALIZATION to try to diminish the guilt.  More rationalization is thinking that if I had called the doctor maybe he wouldn’t have found it either.  Knowing her doctor – who likes to take a “wait and see” approach before ordering big tests and procedures – maybe it would have been weeks or months before he figured it out too.

All the rationalization in the world doesn’t actually take away the nagging feeling of guilt that I have because I didn’t take her to the doctor in May (or June or July or August).  Maybe she wouldn’t have had to have such a radical re-section of the tumor, maybe her left side wouldn’t be as damaged as it is now, maybe she wouldn’t have had to endure 14 months of chemotherapy.  Maybe maybe maybe…. the maybe’s still keep me up some nights.

In defense of my official lack of parenting skills and maternal instinct…. does this look like a kid who has a tumor invading her brain?

This was taken at the beginning of August.

So how did we get to the doctor’s office on September 7th?  Well it started when she began pre-school at “Shooting Stars.”  The mornings we would get up she always complained she had a headache.  But after she ate and went to school she was fine.  She spent some time at my mom’s on Labor Day Weekend and my mom found out that she couldn’t hop on one foot.  There were alarm bells going off in my head but I just couldn’t for the life of me put all the puzzle pieces together to figure out what was wrong with her.  Then she fell not once but twice trying to walk around the corner in the hallway.  So on Tuesday morning (9/4) I called and asked for an appointment to see the doctor – given the random stuff like hand squeezing, not hopping properly and tripping they scheduled me for the following Wednesday (9/11).  Tuesday afternoon when I picked her up from pre-school the teacher told me they couldn’t get her to open her left hand to make hand prints.  I was in a panic mode at that point and called my sister who calmed me down.  After I got off the phone Teagan asked me “Mommy what do you wish for on your shooting star?” – because that was what they had done at school that day.  I don’t remember what I told her because all I could hear was the voice in the back of my head screaming “THAT YOU ARE GOING TO BE OK!”

Two sleepless nights (for me not her) and one trip to zoo where she couldn’t use her left hand to pick up a potato chip and suddenly I started to see the giant blue and pink neon flashing sign.  I asked why she didn’t use her left hand and her answer was that “it was afraid.”  She told me she fell at school trying to do a cartwheel and her left hand was “afraid” after that.

Calmly (sort of), I called the doctor one more time on Friday September 7th, 2012.  I told them we had an appointment for next week but could we come in before that because she fell and hurt her arm when she was doing a cartwheel.  Of course a possible dislocated shoulder, elbow, wrist, or even worse a BROKEN BONE got us an 845 am time slot that very same morning.

Next :  Bad is never good until worse happens.  ~Danish Proverb

(Grey) Matters Over Mind

Yesterday was Brain Tumor Awareness Day.  I advertised out the wazoo to everyone on Facebook that they were supposed to wear gray yesterday to support brain tumor survivors.  Luckily brains work in mysterious ways.  It wasn’t until yesterday night at 9pm when I was putting on my PJ’s to go to bed that  noticed I had actually worn gray all day.  Gray shirt and gray shorts.  Yay ME!  Actually … Yay subconscious!

See originally I had not selected gray clothing for the day.  At 545 am when I was walking out the door to go to work Teagan decided to celebrate Brain Tumor Awareness Day by reliving actually having a brain tumor and throwing up.  Okay maybe she was reliving chemo as she typically threw up between 545 and 645 am.  Either way with both parents due to work yesterday we were in a pickle.  Luckily I was able to convince (and probably owe several Big Apple Bagels to) a coworker to stay over until 10am when there would be full staffing and I went back home.

With Teagan tucked safely in bed with water and The Fairly Oddparents and Dawson heading out the door to the bus I realized I was still in my work clothes and decided to throw on shorts and a T-shirt.  And for whatever reason (more than likely the top shirt in the laundry basket) I picked a gray shirt – then actually matched with gray shorts.  All hail the power of the subconscious mind.

I’m an intrigued with the brain.  I have been (for obvious reasons) since 2007.  Although I cannot recite all of the parts of the brain or even begin to describe their infinite amount of functions I am still amazed by what brains do on a daily basis.  I am still in awe of Teagan’s neurosurgeon.  Not in awe like the “McDreamy” stuff on Gray’s Anatomy but just amazed – what type of confidence in yourself do you must have to open up someone’s skull and cut out tumors?  I read a book about a year after Teagan’s second surgery written by a female neurosurgeon as she finished her last year of residency.  As rare as neurosurgeons are in general there are only 200 or so women who claim the title.  I sped read the book and all its gory and glamorous details.  She describes the brain as having the feel and texture of tofu.  She describes what it’s like to drill through someone’s skull knowing that you have to stop at the right spot or you start drilling into brain.  Based on my recent construction work on our deck out back and my inability to stop the drill once it really gets going I’d say I would make a lousy brain surgeon.

My favorite part of her book is where she describes brain tumors.  After explaining that there isn’t any certain chemical or cell phone or bad habit or any other sin that causes them she sums it up by saying In short, a brain tumor is the fault of no person or thing.  As with a deadly hurricane, nature is often both powerful and indifferent.”  My daughters golf ball sized “hurricane” is sitting in a jar of formaldehyde on some shelf at John Hopkins university.  And I can say that “hurricane” accurately describes the last 5 years of our lives.  And just like the indiscriminate hurricane that levels one home and the one next door remains standing – the difference between fatal and survivable in a brain tumor is as small of a margin as .1 cm.  We were of the lucky latter group allowed to remain standing unlike so many other children and adults every year.

So as for Brain Tumor Awareness Day 2012 I can at least say I wore gray — thanks to the tofu in between my ears.  One day maybe I will not feel like a Who screaming at the top of my lungs so someone other than Horton can hear me about the need for more research and treatment and cures for brain tumors and children’s cancer.  For now I will continue to do the “beeping” and “yapping” and “yipping” and “bipping.”  And maybe one day my little JoJo will come along and make the noise that the rest of the Jungle will hear.  Proving that “a person’s a person, no matter how small.”

Works cited:

Firlik,Katrina.  Another Day in the Frotal Lobe.  New York; Random House, 2007.

Geisel,Theodore Seuss.  Horton Hears a Who!  New York; Random House, 1954.

Afterword:  The 3rd Grade production of’ “Suessical Jr.” may or may not have influenced this blog — as well as typing notes on the 7th grade English final exam including how to do a ‘works cited’ page.  Jus Sayin’