Embracing the Wonder

OK, so perhaps that last blog was a bit abrupt.  I apologize if it took you by shock.  I honestly do not know how to share this information.  How not to shock, even if you somehow know it is coming.  How to ease the pain, grief, frustration, or a whole mess of other feelings too.  How not to want to have the "right" thing to say.  How not to want to "fix" this thing that cannot be fixed.  Thom and I are working on allowing others to have their grief as we have been allowed to have ours.  Right now it feels as if everything has changed and at the same time nothing has changed (did I already say that?)

Yesterday was extremely challenging as Ellie seems to have some kind of stomach bug right now that caused her a lot of pain and created a lot of mess.  Ellie was extremely uncomfortable, spending much of the afternoon crying in bed.  Ugh.  My one wish for today is for her to feel better.

Huge thanks to Ms. Kathy Mack for the wonderful dinner on Sunday night and to Brittany for whipping us up a Lasagna!  I cannot even begin to tell you what a gift it is to already have food made right now.  Thanks to Karly for hanging with Ben on Friday after school and making his day funderful!  And thank you to Zumba Jen for the breath takingly beautiful e-mails.  They are even better than muffins, they are like a bar of the finest Gail Ambrosius dark chocolate.  If I have neglected a thank you, please know it is not because I am not greatful, it is because my brain is a bit foggy right now.

Here is an Ellie lesson from my Great Aunt Glenna (emphasis on "Great")

What I've Learned From Ellie

First I learned how important it is to have fantastic, talented parents like Debi and Throm.  Parents that love you and help you live life to the fullest.  Ellie teaches you about how to seize the moment, about holding someone's hand, and embracing the wonder of every day life.  Most of all, she has taught me to cope with what we don't understand. Her courage has helped me to go on zooming down the road . Ellie has the courage to do what is hardest and love without fear or boundaries.

I have never met Ellie but she is my GREAT, GREAT niece.  I have read "Sunny Days With Debi" for years.  I know she has great genes from many sources, and one source is my mother.  She would have loved Ellie's new words and understood the logic behind each one.  They would have enjoyed each other if they had ever had the pleasure of meeting. They would have bonded.

Many thanks to Debi and Throm for sharing Ellie with family and friends.  It has made me "jilled."      Aunt Glenna Burns

"You're not in trouble"

[caption id="attachment_3096" align="alignleft" width="300" caption="Budda Ben"][/caption]

We have officially signed on with Hospice Care.  This means that our doctor believes Ellie has 6 months or less.  We are now moving more into a phase of managing symptoms and providing comfort.  One of the things I have been pondering, is how can I make this time frame as amazingly spectacular as her life has been? Filled with love, humor, tears, authenticity, joy. I force myself to focus on right now and not thrust myself into the future.  A future where Ellie is no longer with us physically.  How can I allow myself to feel the weight of that and at the same time fully experience the time we have left?  I keep thinking how letting go is something we parents begin to do from the very first moment we hold our children.  There are moments right now where I do feel so connected and tuned into all that surrounds me that this seems totally possible.  Other moments not so much.

Another lesson from my dad:

I thought of another Ellie lesson that I have not yet seen anyone mention.  That is of her wonderful ability to take whatever you say and tell you that "It's OK you won't get in trouble with me".  The more I consider how wonderful that outlook is the more I am amazed at my granddaughter.  Love you dad

A Book Hero

 

Dan, Sara, Noah, Mia, Zach. Are they not beautiful? Seriously.

We are back home and Ellie had a rough evening of yucky stuff ("sucky" as Ellie would say to combine those 2 words) flying outta her body, at one point forming yet another lake here in Wisconsin.  She keeps questioning whether or not we are home yet.  And is having bouts of eeyor-ishness (gloomy sadness), probably partly because she isn't feeling well. 

Another Ellie Lesson from her stupendous Aunt Sara:

Over the last year or so, it seems more and more people are prophesying the end of the book era in favor of digital books.  I don’t think Ellie has much capacity for disdain, but I bet that idea would not leave her feeling too jilled.  Very few things satisfy like the tactile enjoyment of holding a good book, being surrounded by good books, organizing a pile of good books – finding just the right book to read at bedtime.  Ellie is a true book lover.  A lover of not only a frabulous story, but of the medium itself.  On behalf of books and bibliophiles everywhere, thank you Ellie!  You are our hero!
Love from Richmond,
Sara

 

A Love Story

Cynthia is on the left side of the photo.

Ellie is doing so much better today cognitively, we are planning on going home tonight!  This poem is written by our grabulous friend, Cynthia.  Grab a box of tissues, its a tearjerker!

For Ellie, in gratitudeWhen I walk down the hallway
I don't look in the other doors
I can't bear it

but my heart
feels a pull
toward your room
and I know that wherever
you are
is one of my homes

That is how you make me feel
my precious Ellie
At home

If I am lucky enough
you are awake
and I can gaze into your dark brown eyes
Oh, those eyes
I can see the whole world

I can't help myself
Once again, I tell you
your eyes are beautiful
and you respond
I have my dad's eyes
We smile at each other

Another time
I am lucky enough
to read you to sleep
You rest
peacefully
I turn to your dad and say
I love her
He just nods and smiles at me
He knows how true it is
How full of life and love
you make me feel

Ode to Ellie

[caption id="attachment_3071" align="alignleft" width="300" caption="Jenny and Bella Rose."][/caption]

This morning Ellie continues to oscillate between lucid and disoriented.  Not as often as yesterday, but she continues to say a sentence repeatedly that no one can understand.  Every time she says it my heart breaks a little, with the frustration of not being able to comprehend someone whose favorite thing is communicating.  Although perhaps I can take solace in that she may not fully realize that we are not understanding her. 

Another spectacular contribution to our Lessons from Ellie.  This one is from our neighbor in La Grange and our spectacular friend, Jenny (we seem to "collect" wonderful Jennifers).  She has been with us on this journey since the first day Ellie was diagnosed.  She is one of the kindest people I have ever encountered and I feel fortunate to call her a friend. 

Ode to Ellie-

I met you in Kohls,
then again in oakbrook mall,
You were just a wee thing, baby bjorn and all
And then, how strange, I heard you lived in La Grange
And how lucky for me to discover that
You lived across the street
I had never met a mother and daughter so sweet
You opened your doors to me and my Bella
And then we met your dad, one heck of a fella
( ok I'm not a poet and I never went to college)
You shared so much with us grateful Behms,
We felt love burst at the seams
You taught us some rhymes,
Shared many a book,
I fell for the Kennedys with just a look
Well, your family has grown and you've since moved away,
I can't cross the park to come over and play,
But my Ellie, I'm still inspired every day.

Ellie and the Kennedys are the kind of people that give me hope for humanity.
Warm, kind, funny, honest, quirky, look into your soul( oh and good looking) kinda folks!

Jilled

My sister had shirts made for Thom and I that say "jilled" (joy + filled) one of Ellie's favorite words.  I wore my shirt today and Thom wore his last night.  A gentleman stopped me in the hall today and said, "Hey I saw that shirt yesterday.  What does it mean?" I explained and a huge smile spread across his face as he 'got' the meaning,

When Ellie was missing home yesterday, I asked what she missed the most.  Immediately she told me her 'friends' (teddy bears and dolls).  I declared that I would bring a huge suitcase to the hospital filled with her friends.  I have set them up all over her hospital room.  I was explaining this to a nurse's assistant (NA) when she told me Ellie told her she missed her bookshelf most of all.  Hmmmm that presents more of a challenge.

MRI and EEG performed this afternoon when Ellie was really out of it, both looked good, neither explained her changed mental status.  Even talk of us going home tomorrow.  Hard to imagine with her continually changing grasp of reality.

Pretending

[caption id="attachment_3061" align="alignright" width="300" caption="Ben pretends to be a dinosaur."][/caption]

After being in the hospital for a week and a half, things out in the "real world" start to seem a bit surreal.  Culture shock.  I mean the hospital has its own time zone and language for crying out loud!  How could I not get culture shock?  Going to the bus stop in the morning and waiting with the other parents can feel mighty jarring.  Pretending I will go home and have a "normal day". Maybe watch The View or go to the grocery store or tackle the mountain of laundry in my living room.  We are walking a tightrope in in-between land where we are uncertain whether our lives will look similar to how it did before this hospital stay or extremely different or maybe somewhere in between.  Unfortunately, there are no maps in in-between land.  You have to make your own path along the way. 

Dr. Iskandar, neurosurgeon extraordinaire, stopped by this morning.  He was cautiously optimistic that because of the shunt revision we will see a change for the better over the next days or weeks.  We are getting ready to go for an MRI because when she woke up at 1pm, she was only speaking only gibberish and she was pretty agitated.  An EEG is also ordered to check for seizures.

The lessons from Ellie have been so incredible, at times, like a salve on a wound, reminding me of all the joy Ellie has spread far and wide.  Here is another one, from my Aunt Doris.

Ellie has taught me the meaning of strength. I have never known anyone with as much strength as she has. Think she passed a  little of it on to her Mom and Dad as well. God bless each and everyone of you. Love, Aunt Doris

Adding Depth

[caption id="attachment_3046" align="alignright" width="300" caption="Snuggled up with my kiddos."][/caption]

Dr. Iskandar, neurosurgeon extraordinaire, just stopped by postoperatively to say that there was lots of scar tissue around Ellie's shunt.  Whether or not this was causing all of her recent issues, time will tell. 

 



A great big thank you to superb Cynthia for not one, but two visits.  I somehow failed to mention her in a blog after her last visit, very unlike me.  I told her maybe she needed to be more "memorable" for me (ha).  She said that next time she'll come running down the hospital hallway naked screaming, "I'm in my birthday suit because it is someone's birthday somewhere!"  Last night she brought us wonderful Thai food that saved my life when I was hungry and needed to run into the kitchen to grab something quick like while Ellie was once again npo (nothing per oral, fancy medical way of saying you can't eat or drink.)  When Cynthia came by last night, Ellie was also npo.  As she stepped into the room, she started to discuss the food she'd brought and Thom and I were both like, "NO don't say the four letter 'F' word!!!"  (food) 

Here is another Ellie lesson, from our awesome friend, Jennifer.

[caption id="attachment_3045" align="alignleft" width="300" caption="Jennifer is sitting in front of the pink curtain."][/caption]

How in the world do I put into words what I have learned from Ellie?!?  It is more a shift in perspective on life in general than an individual “thing” learned.  Not to worry what other people think, to be happy in your own skin, doing your own thing, that might be the biggest one.  To try to have fun and be joyful every moment of the day, no matter where you are or the situation you are in, because wallowing in self pity certainly won’t help anything.  To appreciate every day, to appreciate every person who crosses your path, to just be filled with more gratitude in general.  How she always wants to make others happy by spreading her hugs around -- not many people, kids especially, are selfless like that.  Hearing her talk about the different versions of hugs and the huggle snuggle shop, back in the day when she was really into different kinds of hugs and putting out hug fires.  I have great memories of spending LONG weekend days at your house, hanging out, before I had kids of my own, and I know that I’ll never be able to do that again due to my own family life now, but there are definitely times when I miss spending that kind of time with you and your family.  Being her friend (and being your friend, and your entire family) has added a depth to my life that was not there before and for that I am eternally grateful.

What Really Matters

We are once again scheduled for surgery at 3pm.  Well first we were scheduled for 11am.  It is sort of like being at the airport watching your flight departure time change.  But hungrier. 

Here is another Ellie lesson from my awesome friend and Tiara coach, Amy.

So…strangely enough, I haven’t met Ellie in person. And, given that, she has still taught me so much. The thing that immediately comes to mind and maybe doesn’t sound terribly juicy, yet it’s HUGE for me is that Ellie reminds me that it’s more important to have fun and be joyful than it is to get it right. I think about her making up her words. And how – so often – I can’t allow myself to just have fun and go outside the “rules” and let loose.  I love how she is focused on what really matters….being jilled.

 

Given

Surgery kept getting pushed back today until it was canceled for today.  Probably try again in a few days.

This Ellie lesson is from Ellie's stupendous Aunt Sara who personifies grace.



[caption id="attachment_3036" align="alignright" width="300" caption="Sara and my nephew Zach."][/caption]

What a road you and Thom are walking – and yet, the gift is that you live with the peace, clarity and simplicity of lives focused on truly living each day you are given.  Thinking of how much I admire you both, I was reminded of this poem by one of my favorite thinkers.



Given

We travelers, walking to the sun, can't see
Ahead, but looking back the very light
that blinded us shows us the way we came,
Along which blessings now appear, risen
As if from sightlessness to sight, and we,
By blessing brightly lit, keep going toward
That blessed light that yet to us is dark.

Wendell Berry, Sabbaths 1999: VI

Love, tears and respect from Richmond,
Sara

The Best Kind of Love

More adult confusion here, this time about how long to wait after eating for sedation.  Surgery may be moved back to 4pm. 

All of the Ellie lessons being sent to me are so fabulous, it is challenging to choose which one to include.  Here is one from Ellie's Grandmama and Grandpa (Thom's parents):

This has been a roller coaster ride I wish that none of us in this family has had to ride.  To have watched this sweet child, who never did anything to anyone but be sweet and creative in her special little world, have so many problems and go through so many "procedures" and surgeries.  But through it all, we have all gained strength to go the next step because of one Thom and one Debi who loved on this child as God loves her.  We could learn their patience and their good attitudes... even if they were added for everyone else's benefit in addition to their own.

Ellie has taught me that creativity can come in word forms.... so far beyond what they rest of us can understand or imagine.  I feel I am a better person to know this sweet angel.

With much love from Ellie's Grandmama and Grandpa,  Nancy and Gene

And a bit more from another e-mail that I am sneaking in...

I was talking with a friend this morning and her comment was how lucky Ellie is to have a mom and dad who love her so much.  I couldn't even speak as I have said many times NO ONE could give as much love to this child as her mommy and daddy are doing.  Ellie may not have been able to experience some of the stuff of other kids, but she has missed nothing.  She got love.... the unconditional Kind.. the best.

I need another box (of tissues).

Please hug her for me.

Love, Nancy

Showing Some Color

[caption id="attachment_3021" align="alignright" width="300" caption="Laghing Ellie"][/caption]

Clarification that YES, we still are in the hospital, just not in the PICU, but instead on the oncology floor.  Yesterday was filled with confusion (for the adults even, not just Ellie) over what would occur today.  First we were going to have a care meeting with all of our doctors to figure out a plan for us.  Then, we met with Dr. Iskandar he explained that he really felt that there was a chance that her shunt is malfunctioning slightly and causing some of the problems we have been seeing.  We agreed to the surgery (a "minor" brain surgery called a shunt revision) which will be performed today at 2:45. 

Ellie has been so much more lucid over the last day.  She was even able to eat on her own and go to the bathroom out of bed.  Today her sodium is a bit high, so we are working to correct that. 

Yesterday, I was feeling a bit crazy weepy and thought it would be good to have a visitor, I immediately thought of our excellent friend Esther.   Esther then texted ME as if she had gotten my mental text message to ask if she could come for a visit.  As I have mentioned in previous texts, Esther previously lived in Memphis and she has met my entire family.  She has become an honorary member of my family.  Here is what she wrote about Ellie:

[caption id="attachment_3022" align="alignleft" width="300" caption="Esther and Jonathon at a Ben birthda party."][/caption]

I have been thinking a lot about Ellie especially lately.  Before I go to sleep and when I wake, I think about her and say a little prayer.  In my mind, I go through all my different memories with her.  From when I first met her in Memphis to living near her now in Madison, Ellie is definitely unique – set apart from other children in her own way.



 Ellie has taught me a lot over the past few years.  Sometimes when I leave her, I get so humbled and encouraged by her to the point of tears.  One of the main moments that stick out in my memory was the morning I was visiting her before one of her previous brain surgeries.  Dressed in my usual black attire and with a heavy heart, I approached Ellie’s bed in the pre-op area.  She was into giraffes at the point and I brought one for her.  When she saw it, she shot up in bed and said, “No waaay!” and I said “Waaaay!”  This girl was extremely jilled right before brain surgery!  She always manages to make ME smile even when she is going through the roughest times medically.

 Agogo was there too right by her bedside with a cheerful smile.  Somehow we got on the topic of favorite colors.  At the time, I think Ellie was into bright yellows and oranges.  She couldn’t pick just one.  Agogo I think said she liked pink.  Ellie then asks me, “Esther, what is your favorite color?”  I naturally responded “black” as I appropriately was wearing.  Both her and Agogo just stared at me.  You could literally hear a pin drop.  Ellie asked me, “Why?” as if black couldn’t be anyone’s favorite color.  I remember the look in her eyes clearly.  When Ellie talks to me, she looks at me as if she is looking into my soul.  At that moment, I just felt such heaviness in my heart and had the urge to pour out my soul to her.

 I joke about this moment with friends but in actually, Ellie has made me see “color” in my life and those around me.  Whenever Ellie came to visit or I went to visit, she would be brightly dressed so proud of her outfit and how it made her feel.  She always exudes happiness and it is definitely reflected in her outer appearance.

 My wardrobe is still filled with a lot of black clothes but I have to say, I have been buying colors now to the shock of many friends.  Like Ellie, I too want to exude happiness to others.

[caption id="attachment_3020" align="alignright" width="300" caption="Esther, her son Jonathon, Kaitlyn & her dad, Mark"][/caption]

 

 It’s funny but maybe this is a small reason why Ellie loves peeling crayons.  Colors shouldn’t be hidden by paper covers.  They need to be naked and shown in all their glory.  Don’t get me wrong - I am not ready to streak through the streets but I definitely have made one step towards taking off a "layer" and showing some color.

 To Debi & Thom, thanks for letting me into your family and into Ellie’s life… even if Ben still thinks I am Jennifer.  He can call me whatever he wants, I’ll take it!

 Love you guys.

Esther

And here is a text Esther sent after her departure:

Ellie was doing a little repeating while u were gone.  I said to her when she smiled, "I love ur smile, u r so beautiful".  She repeated this sentence back so I thought she was repeating but then she added "Esther" at the end with a smile--that was the highlight of my day.

 

More Ellie Lessons

Ellie is doing so much better today, more lucid than disoriented.  She even started eating again!!  Another tearjerker, watch out (that's a good watch out, as Ellie would say).  This one is from my great Zumba friend, Jen.

Debi,

My hope for you is that you are inundated by inspirational words from novice authors that upon their delivery, provide you with instant strength to nourish you and your family while you continue on Ellie's journey.  

By your mother's suggestion I was compelled to write to you about "The Life Lessons of Ellie."  As you are well aware, I have never met Ellie in person - I know her through you - her "Inspirnomenal" (Inspirational + phenomenal) mother. There's one of Ellie's life lessons - I will never see the english language the same again. I will continue to see it through "The Eyes of Ellie."

I had this urge to try to fit the word "Little" somewhere between the quotation marks of "The Life Lessons of Ellie."  But when I tried to apply "Little" in between the quotations, I quickly realized that Ellie or anything about her is not little - in fact "Ellie is Epic."  

[caption id="attachment_3006" align="alignright" width="300" caption="Thom's favorite photo of Ellie"][/caption]

Ellie's spirit is Epic.  She is as infectious as laughter - I see her as "The Ellie Movement." Her far extending reach - has even touched the lives of people she has never met - such as myself.  I continually aspire to be a better person because of what Ellie emulates in her life. "Ellie's Optimistic Attitude."  Her life is not to be measured by her young years - but the greatness of which she is living those years, her courage is extraordinary.  When you think about living large with Ellie - it might be sitting down with a large bucket of crayons peeling the wrappers off of every last one of them.  All of a sudden everything in my life gets flipped around - what once was large on my never ending life list - is now small and vice versa.  Thank you Ellie for reminding me of that lesson.

Ellie exemplifies everything that is good in this world. She brings out the goodness in others.  I remember you Debi telling me that you didn't want your family and Ellie's illness to be used as a standard measure that people use in comparison as a reminder of how fortunate they are because of what you've gone through with Ellie.  I see it another way.  I think that your family subliminally challenges all of us to "Measure Up."  To rise up to do better, to be a better person. It is a choice that Ellie and your family makes every day to live your  lives with dignity, gratitude, integrity and the utmost grace.  Where nothing is taken for granted. Where there is appreciation for everything.  To live in the moment - grabbing a hold of that moment - hanging on tight to that same moment - not knowing what that moment may bring.  All done with huge amounts of hope and faith. In other words taking "The Ellie Challenge".  

I believe that Ellie has left an "Indelible Ellie Imprint" on my heart and with out a doubt the hearts of others that have had the fortuitous opportunity to be a part of Ellie's life.  What a gift.  I will be forever changed because of Ellie.

I'm hoping you can feel the abundance of love being sent your way. Know that you are not alone.  Wrap yourself in the good thoughts and feelings of Ellie.

Jen

The most beautiful sound

[caption id="attachment_3001" align="alignleft" width="200" caption="Ellie in third grade."][/caption]

Last night, as I was saying good bye to Ellie, she said as clear and sweet as could be, "Good bye mommy", it was the most beautiful sound I've ever heard (outside of Ben and Lotta laughter, of course.) 

Today, once again, Ellie has been in and out of it.  It is like an on-off switch now her being in and out of it, her transitions are so abrupt. 

The Ellie lessons have started arriving.  I won't give them to you all at once, because that they (at least for me) produced an extremely ugly cry.  Here is one from the totally brilliant Brittany.  (May I suggest having a big box of tissues handy?)

Hey Debi :)

[caption id="attachment_3000" align="alignright" width="300" caption="Brilliant Brittant and Ellie."][/caption]

So I don't even know where to begin on things that Ellie has taught me. Other than the obvious, to always look on the bright side of things, Ellie has taught me to be so appreciative of everything around me. She has taught me that everything in life is a treasure and should be treated as such. I have gone back to reading more and more children books myself because they have so many amazing lessons in them, even for adults. It really is the little things in life that make life worth living. But the main thing that Ellie has taught me is that angels really do exist. My mom has called me angel my whole life and I have always been told by her that angels are all around me. She always used to tell me, "Don't drive any faster than your angel can fly," and that there was always an angel watching in on me. I have an angel, big or small in every one of my rooms in my apartment. I feel like that keep me safe. The first time I was going to meet Ellie, Ms Zwart told me that I would never meet anyone in my whole life like Ellie. After meeting Ellie that first day, her 9th birthday, I realized I would of course never forget meeting my first real life angel. Therefore, I have never been able to leave her life or the lives of you all, her incredible family. God couldn't have chosen a more perfect family and a better mom to decide to give one of his very own angels to. She is just the greatest person I have ever met in my life. :)

LOVE YOU, Brittany

 

'

The begining of the end..or maybe not

Every so often, something will happen that feels like the prism of my life has been turned.  All the shapes are suddenly different.  Nothing looks the same.  That is how I felt when Ellie was diagnosed with a brain tumor.  And that is how I felt yesterday. 

Our neurologist, Dr. Hsu (pronounced "shoe") came by yesterday.  Our doctors here are so spectacular that they often will stop in just for a visit.  I told him how the Dr. Hsu in the PICU(same name, weird, huh?) called this "disease progression" rather than "recovery" as our Dr. Hsu had been.  In my mind, I expected that our neurologist Dr. Hsu would tell me why he felt all of this was part of Ellie's recovery.  Instead, he went "off script" and told me that all of the things we are seeing now are signs of the end of life.  In my head, I hoped that I was the only one imagining this as the "end", that later on, friends and family would laugh at how dramatic and emotional I had been at this time.  Maybe I am just feeling emotional because I am flooded with post pregnancy hormones.  Dr. Hsu said that our main doctors were wanting to sit down with us and have a discussion.  Being "at the end" feels similar to being "at the beginning" of a child's life in a strange way.  The anticipation, what will it be like?  How will our lives change?  But in some ways the opposite, too.  How would it feel not to have this big thing (brain tumor) that our lives virtually revolve around suddenly gone?  Will I have a love big enough to let her go when it is time?  When she is gone, do I still get to say I have 3 children?  Of course my mind has been trying to prepare itself for this news for years.  I have felt as if we were living on borrowed time for quite some time.  We have been so fortunate to get to spend 10 years with this little angel. 

Today Ellie was really out of it--repeating everything someone else would say, or becoming completely nonverbal.  Then Ellie's grabulous 3rd grade teachers stopped by and it was as if a flip was switched, she was suddenly "back"--talking about books, making up words, telling jokes.  It was astounding!!!  Dr. Hsu came back inyo our room to say that he had received an e-mail from Dr, Iskandar (he is outta town) stating that he absolutely believes a shunt revision will improve Ellie's condition.  That has been the roller coaster ride around here!   

So my mom had a grabulous (great + fabulous) idea to give a "shout out" to all of you to send in the lessons you have learned from Ellie and I can share them through my blog.  If you feel so inspired, e-mail me your stories, ideas, comments, songs, poems to debibetsi@yahoo.com.

Lotta laughter

This week, with all of its craziness and uncertainty, Lotta laughed for the very first time.  How strange the contrast of Lotta gaining skills each week, while Ellie loses hers.  I was pondering how much Ellie is like an infant right now.  Yesterday, I inquired whether Ellie was feeling cold.  She responded with, "What is cold?" Which gave me pause.  How do you explain "cold" to someone with low body temperature? 

When I first arrived at the hospital today, Ellie was very out of it, not even really responding to questions.  Now she is much much closer to her baseline--even telling the nurse she was feeling happy.  She just made up a word, "peal-ile" for a pealed pile of crayons, she even laughed at her funny word.    When I told her I was writing a blog, she wanted me to tell everyone she is feeling jilled and is funderful.

an "ellie lesson"

[caption id="attachment_2797" align="alignleft" width="300" caption="Ellie right after birth, looking wise already."][/caption]

Here is a super sweet e-mail my Dad wrote, which I am sharing without his permission (hope that is ok, Dad! I thought I'd let you help me write this blog.)

"I went to the dentist today and thought I would have to go back for extra work as I had been a bit tardy in dentist exams the past few years.  I got xrayed and cleaned and then was told I was all set and to come back in 6 months.  I said "I'm so happy" just as I have seen Ellie do.  I told the receptionist I was having to restrain myself so I would not break into a joyful dance.  What a great influence Ellie is.  Love dad"

and isn't that exactly how Ellie would want to spread her joy?  It just brightened my day to read it and I hope it brightens yours too.  Then, as Ellie says, we'll have "galloping happies". 

Ellie slept all night last night and her sodium is back in the normal range.  During physical and occupational therapy this morning Ellie was much more lucid than she has been in the last couple of days.  It was so amazing to have her "back".  We were physically moved to the oncology floor.  Alas, the lucidity did not last.  This afternoon, she is back to not knowing what she is doing or seeing.  Sort of in her own world, where she is back home playing with her books and peeling crayons.   

Awake Beauty

There are certain moments where I just feel so heavy like I can't continue on.  Walking by a room in the PICU, I saw a mother holding a baby younger than Lotta, gently stroking her baby's head.  She was fully suited up with a mask on.  It made me want to weep.  But then I feel like if I start weeping, I will be unable to stop.  I might just melt into a pool of butter on the floor.  Other times I can turn it off and not feel so emotionally at the edge.  Then I think of the times when Ellie feels like she cannot get out of bed, and I remind her that if she says that she might believe it.  And I remind myself that I absolutely can do this and I will do this and one day I will look back on this time and be amazed at what we were all able to pull together and do.  Right now, in the middle of all this, it feels very messy and dramatic.

This morning as I walked up to Ellie's room, the fellow was finishing up.  He said that his conclusion was that the symptoms we are seeing now is merely "disease progression."  We have explored every avenue and have done everything we can do for her right now.  He recommended that we move to hematology/oncology service. 

Our neurologist however, is convinced that Ellie is still in recovery mode from 4 major brain surgeries and chemotherapy.  He thinks that the change in cognitive function may be due to lesions in the frontal lobe (the part of the brain responsible for rational thinking) from her previous surgeries.  He also thinks some of the fluctuations in her heart rate may be due to the second incision site (at the back of the head, near the brain stem),lesions to that area of the brain. 

Ellie is back to being awake for days on end, which seems appropriate after being asleep for days on end.  She had a hard time coming out of the anesthesia yesterday after her MRI and was doing some heavy duty hallucinating afterwards.  This morning she has not been talking much, just mostly staring, as that is about all she can do with this level of exhaustion.  Her heart rate is again fluctuating between the 40s and 50s and occasionally dropping into the 30s (that is when I get nervous).  Her heart monitor is on silent mode because the alarm is pretty much constantly beeping.

ch-ch-ch-changes

[caption id="attachment_2959" align="alignleft" width="300" caption="baby ben"][/caption]

ellie's sleeping beauty turned into wakefulness.  her low salt turned into high salt.  her body temperature began to fall, bringing her heartrate with it.  she has been much more consistently disoriented today.  she kept thinking she was at home, then becoming extremely sad upon realizing her whereabouts.  the mri was finally completed after some initial delays, have not heard back from anyone the results.  ellie's body temperature started to drop which seemed to be bringing her heart rate done with it.  she quickly warmed up, but her heart rate has remained on the low side (right now in the upper 50s and 60s).  lotta does not wanna blog anymore right now.  gotta go bounce and walk.

Sometimes these "spells" are tricky

[caption id="attachment_2954" align="alignright" width="300" caption="Ellie at the hospital in Chicago."][/caption]

Ellie did not sleep last night, making up for lost time I suppose.  She is definitely more awake today than yesterday.  She continues to have moments of disorientation and loss of vision.  The neurologist (Dr. Hsu) suggested that because vision is processed in the back of the brain, perhaps the signal is getting interrupted somewhere along the way.  There are vision tests that can test how long it is taking the signal to travel.  We will be doing a full brain MRI (she'll be sedated as it takes 45 minutes to an hour or more) to get a more accurate view of her brain.   Right now Ellie is peeling and breaking crayons in bed.

The spell is broken!!

Ellie is awake!  She has even already eaten 2 chocolate chip pancakes (a hospital speciality) and 2 sausage links (her favorite shape for a sausage).  She is somewhat sad to be in the hospital but oscillates back to feeling jilled.  Still pretty sleepy and having some vision difficulties.  Just so so happy clappy snappy to be able to talk with her again!!!!

Sleeping Beauty

Ellie continues to sleep, even after a super duper dose of rescue steroids this afternoon.  It suddenly hit me during a conversation with endocrinology that she is sleeping beauty--we just have to figure out how to break this "spell".  Her left lung has started to collapse and the PICU team is monitoring her breathing closely.  The PICU resident told me that any other patient with this level of unresponsiveness he would've intubated (the tube down the throat to help with breathing) a while ago.  The Endocrine team is not totally convinced that her drop in sodium level is causing all the sleeping, they feel that the sodium drop may be a symptom of something bigger going on in the brain.  At the end of this day, we still have as many questions as we did at the beginning.  And now we are coming up on 48 hours straight sleeping.

acknowledgement for the unacknowledged

This morning was a bright crisp autumn morning as I walked Ben to the bus stop.  On my journey home, I noticed a possibly homeless man I have seen quite often in our neighborhood.  His pants have only one leg that reaches to the ground, the other cut off at the knee, and he wears a tattered hat.  Sometimes when he walks down the street it seems as if his brain gets stuck on doing one activity obsessively.  I have wondered how imprisoning that must feel to have your brain be stuck, forcing your body to repeat an action over and over.  This morning as I walked by, he seemed in a better state of mind, I said, "Good morning," as we do here in Madison.  He responded in kind and then said, "Thank You."  What struck me was the thank you, it was as if he was not used to someone greeting him and he truly felt appreciative for the acknowledgment.  Made me feel both happy to be a part of that moment and sad that this did not seem more of the norm for him. 

On Saturday night, Ellie pretty much passed out at 7pm.  She continued to sleep on into the day on Sunday.  This is not completely abnormal for her, particularly since she had pulled an all nighter last week.  Around 3pm on Sunday we decided to make sure that we could still wake her up.  During her sleep she had started moaning and crying.  We were unable to arouse her fully.  Thom and I debated whether or not to try to get her to our car on our own or to call 911.  Ben's enthusiastic vote was to "call 911!  Call 911!!!"  For the safety of Ellie, making sure we didn't cause her any further injury, we decided to call 911.  I sort of wish there was an 811--this is an emergency but not a total emergency.  We really just need a ride to the ER, and of course the prompt service we get when we arrive by ambulance is also an incentive.  Upon arrival, Ellie was given, as usual, a stress dose of steroids.  Typically this revives her.  Yesterday it was a no go.  The only thing that seemed amiss was that her sodium was low.  Ellie is still not fully awake this morning, she does moan and cry out when someone is "bugging her"--as she is right now because she is getting another EEG to rule out seizure activity.  She has not opened her eyes and spoken since Saturday.  Her MRI and shunt tap showed that the shunt is still functioning well and there is no sign of infection in her brain.  Dr. Iskandar (neurosurgeon extraordinaire) stopped by to say that she is just extremely sensitive to even seemingly small changes right now.  He said that we could expect at the very least a year of her being more vulnerable.  The EEG technician was just taking off the glue and Ellie yelled out, "OUCH!" as she had her hair combed and she even opened one eye.  Never have I been so excited to hear an "ouch" before. 

Last night, our great neighbor, Chris stopped by with her order for a school fundraiser.  She asked if she could get us anything from our local grocery store.  I said no, right as Ben said, "Moldy bread, clean water, and bananas."  So about an hour later, Chris stopped back by with a bunch of bananas.  So sweet.  Brittany also stopped by and helped me fold some of the mountains of laundry that have accumulated over the last 24 hours.  Thanks to both of these fantastic women!