PLEASE don't help me...

[caption id="attachment_2711" align="alignright" width="300" caption="Proof that yes indeedy at one point Ellie consumed FRUIT!"][/caption]

Recently, I was reading how Gloria Steinam was on a bus once and saw a huge turtle near the road.  Concerned over the turtle's safety, with the help of some of the passengers, she carried the turtle to a safer spot.  Later someone informed her that the turtle was probably coming near the road to lay eggs and that it may have taken the turtle 6 months to climb that far.  The lesson she took from the experience was that to make sure the person/animal you are offering assistance to actually wants/needs your assistance. 

Recently I was in Trader Joe's with Ben working through some "chip issues'.  He wanted to try some chips, I did not want to take another bag of chips home that I was almost certain he would not consume.  Anyway, an older gentleman kept coming over to talk with us.  Which was challenging enough because I was trying to hurry through the store and get off of my sore toe without being rude to him, because he really seemed like he needed some companionship.  When he saw Ben and I having our moment of working through, he started trying to "help" by telling Ben he was going to have to learn to follow orders before starting kindergarten.  And by applauding my efforts at saying "no", which was not really what was happening anyway.  Ben and I were trying to come up with a solution that was agreeable to  both of us, which is the goal that I am always striving for in my family.  My vision if you will.  Anyway.  The thought went through my mind, "Please don't help me right now!!"  just as Ben said out loud, "I hope we never see him again."  

[caption id="attachment_2713" align="alignleft" width="300" caption="Ben experiments with drool at an earlier age."][/caption]

Or Friday morning when Ben tried an experiment to see what would happen when he pushed the water button on the fridge without a cup underneath (water sprays all over the floor).  I asked Ben if he could please clean it up, because he loves being a helper, he was totally willing to jump in and wipe up the mess.  But then the home health nurse started saying something about what a mess, you really have to clean that up, etc.  I know she was trying to be helpful, but I could tell that this line of discussion was going to turn Ben OFF to helping out.  It reminded me of when a toddler says, "I want to do it myself" or my more adult version,  "Please don't help me!!"   Maybe my real frustration in both situations was with myself in not feeling able or knowing how to just ask both adults to leave us be.   

Which brings me to the conundrum (one of Ellie's favorite words) how do you know when to jump in and help and when to step back and allow others to work it through.  I mean because at times it is wonderful when someone jumps in and does something unexpected (for example, when Lainie dropped off bread from our favorite bread company or when she folded laundry as she watched the kids or when Nancy and Gene vacuumed the whole house rather than just the rugs downstairs).  And during our hospital stays, the people that were the most helpful were the ones who said, "I am making you dinner and bringing it over Tuesday".  Or "I can take Ben on Thursday to the park."  Or the nursing assistant who just jumped in and started helping me clean up after a big poop blow out was exceedingly more helpful than the nursing assistant who walked into the room and stood watching me rush around cleaning up until I specifically asked her to help.  So in those situations it was actually the people who were able to jump in with assistance that were the more helpful than people who would just say, "How can I help?"  which tended to leave us both feeling a bit overwhelmed. 

[caption id="attachment_2722" align="alignright" width="300" caption="Baby Ben and Ellie the first time she underwent chemo."][/caption]

A few months ago, my Zumba buddy described us as being "Haiti", in that we had all of these people jumping in to give us assistance during Ellie's hospital stays.  Maybe as a local Haiti, I need to be able to speak up and say when something is helpful and when it is not (be more like I imagine Betty White would be).   As a helper, maybe it's only offering assistance when you feel inspired to do so.  Or perhaps it is about really paying attention and noticing when assistance would be the most useful.  I don't really have an answer to the question, just something I have been pondering.  Like that 80s song, "Things that make you go hmmm..."

Home

[caption id="attachment_2704" align="alignright" width="300" caption="The first time Ellie learned how to walk..."][/caption]

Yesterday late afternoon we arrived home from the hospital.  Ellie has moments now where she is feeling better, more like her usual self.  Then she has moments when she says, "I wish I had my energy back."  And times when she just feels like crying (that may be the steroids talking or it may be exhaustion or maybe a bit of both.)

We have her set up in bed working on crayons, we are on the final box of crayons shipped from Virginia, if you can believe it.  Ellie fell out of bed earlier today and I race/hobbled upstairs to retrieve her as she was stuck between the heater and the wall.  When she starts losing her stamina from being awake, is when she has the most difficulty with standing/sitting/talking/walking.  She also had a major accident in her room this afternoon, all the way across the floor.  I don't know how she did actually, she may have won some kind of female long distance contest with her performance. 

[caption id="attachment_2705" align="alignleft" width="300" caption="she was a bit easier to pick up."][/caption]

On Monday, we have PT/OT/nurse coming over to start our homecare regiment.  Fortunately, we had much much better visit with the nurse who came last time.  She stopped by today just to check on Ellie, take her temp (94 degrees, on this balmy Friday) and blood pressure and check her hospital papers.  Also a different nurse will be coming on Monday, so we will have the opportunity to "shop around".  

A couple more thank yous...A great big huge thanks to Nancy and Gene (aka Grandma and Grandpa) for ALL of their help over the last week--grocery shopping, vacuuming, laundering, doing hospital time, obtaining food, fixing stuff, wheelchairing me around, carrying items up and down the stairs, reading, etc. etc.  For being oh so willing to help in any way that we asked, without even rolling their eyes or giving us any attitude.  They drove a total of over 12 hours to assist us, even though Nancy is having shoulder surgery on Friday (hey that's today I just realized!)  AND a yummy thanks to Aunt Suzanne who sent the best darn packaged cookies I have ever ever tasted in my life (and the baby completely agrees with my assessment!)  And an entertaining thanks to Karly and Valentine for taking Ben and I to the movie and lunch yesterday.   And an Ellie thanks for Brittany's help with hospital bathing and for Cynthia's attempt at Ellie time this morning (Ellie fell asleep instead.)

The choice

Ellie and I often discuss how although there are some things we must do, we always have the choice of what we think about.  We can choose thoughts that feel sad or bad or we can choose thoughts that feel good or sometimes just a little bit better. 

Yesterday afternoon, our neurologist, Dr. Hsu (pronounced shoe), stopped by to check on Ellie.   After listening to my monologue on what has been happening over the last few months, he said that after such an aggressive surgery, perhaps recovery would take longer.  And maybe recovery is an up and down process.  This statement totally made sense to me, as I recalled the times when I have had a cold or flu and felt suddenly better in the morning and worse in the evening.  It gave me a way to reframe all that is happening here.  Betsy C. said when she heard that almost the entire tumor had been removed, her immediate thought was how that would take a lot of adjustment for a brain, to go from lots of tumor to hardly any.   Those statements have helped to reframe everything going on right now. 

Speaking of choices, I was explaining to Betsy how when I was pregnant with Ben, I felt so indecisive, the pressure of making "the right" decision weighed heavily upon me.  It was when Ellie was undergoing chemo for the first time, something we had hoped to avoid.  Anyway, now Ben has the same difficulty.  He seems to constantly change his mind back and forth and back and forth.  When I told this story to Betsy, she wondered if maybe Ben had been like that all along and that I had picked up on that when he was in utero.  Again, another way to think about it.  And it certainly puts less blame on me, feels a bit better.

Then this morning, the rehabilitation person (I have no idea how she is different than PT/OT/speech therapy) came in and proclaimed that this, in fact, may be Ellie's new baseline.  I almost had to cover my ears and sing a song to block out the mere thought of that as our lives.  This drooling, slurring, unable to sit up, hardly able to walk the new baseline.  Unacceptable.  And, of course, what I have been secretly fearing.  So what I am working on today is focusing on the idea of being on a journey of recovery right now, rather than trying to figure it all out or deciding this is the best we are going to get right now.

What I really want...

I want a drink of refreshing cool water.  I want a world without cancer. I want to take in this world filled with wonder and beauty.  I want to laugh through my tears.  I want to snuggle with my daughter without fear of hurting her.  I want to cry through my laughter.  I want to dance and sing and play.  I want to feel the freedom from that worry niggling me, whatever it may be, suddenly miraculously diminished.  I want the to sleep with the commitment of a baby.  I want to escape.  I want to dive in.  I want to live.  I want to allow.  I want a cupcake with sprinkles.  I want a rainy day.  I want a bright blue sunny day.  I want the wind blowing on my face as I drive with the windows down.  I want to talk about something other than medical.  I want to jump in puddles.  I want a date night.  I want a nice hot bubble bath.  I want to stay up late talking because sleep seems less essential than the conversation at hand.  I want to feel a part.  I want to travel.  I want to take my children to the beach on a gorgeous day and play in the sand.  I want to immerse myself in a thrifting spree where there is nothing but the bargain at hand.  I want a Green Tea Latte.  I want possibility.  I want there to be such greater options for cancer treatment that chemo, radiation, surgery are laughable.  I want hope.  I want inspiration.  I want to inspire.  I want a baby snuggled up lying on my chest, all newborn smell and feel.  I want a world without hunger.  I want the awe and wonder of Christmastime.  I want a mood changing song.  I want a tiny hand to hold from a body that bounces instead of walks.  I want the green of summertime and the white of winter.   I want to lose myself in a great movie, theatre, or book.  I want Ellie giggles.

Not much new to report...

Pretty much the same as yesterday.  Our criteria for going home:  sodium stabilized and Ellie able to at the very least sit up.  Now that Ellie's sodium has gone into the normal range, it has continued to drop, so we are still working on discovering exactly what level of water she needs right now.  May have fewer blogs as there is not as much happening here and I start to feel quite boring telling ya'll the same thing.

A little bit bedder...

[caption id="attachment_2685" align="alignleft" width="225" caption="Ellie"][/caption]

One of Ellie's jokes during her hospital stays has been "I am bedder", pointing to her bed.  Which she discovered after discharge once, that the joke doesn't really work unless you are in fact in bed.  Ellie is better able to communicate today than she has been for awhile.  She is still somewhat difficult to understand, but at least she can form the words now and responds as she typically would.  Her sodium has been back in the normal level.  We lowered her anti-seizure meds because the neurologist was saying how the medication can have a sedative effect.  And now Ellie has been awake almost the entire day.  She is still pretty weak, but was able to get up and take a brisk walk with the nurses to the end of the hall.  She was feeling very uncomfortable being upright again, and sort of sped walked up the hall and back in order to return to vertical sooner (hey I can relate). 

Yesterday Ellie's 3rd grade teacher, Ms. Zwart, stopped by for a visit, which really perked Ellie right up.  Plus she brought us the best brownies I've tasted since Grandma Myers's brownies.  Just the right soft/hard brownie texture that is so hard to achieve.  Ms. Zwart insisted that I have some medical professional look at my foot.  And today, finally, I was in enough pain to be motivated to go to the ER.  Ellie's nurses took turns hanging out with her while I went down.  When I got to the ER, I was feeling so badly for leaving Ellie, and wondering if she would have companionship the whole time I was gone, that I started to tear up.  Right then, I heard the fast pitter patter of a Ben running up to say "Hi".  When he saw me crying, he asked why.  I explained that everyone cried in the ER, and I just wanted to get my cry over with right off the bat.  Then when we went into the room, Ben wanted to sit on the bed and snuggle with me, because he is not allowed to do that on Ellie's bed.  The nurse started asking my some standard questions, one of which was whether or not I had a will or a power of attorney.  To which I responded in a panic, "Do you think this tiny toe is gonna kill me???"  Apparently, these are standard questions they ask everyone, even someone with a 4th toe injury.  Everyone who came near the toe, I had the thought, "DON'T TOUCH IT WHATEVER YOU DO!!!"  I was not at all certain that I would be able to remain on speaking terms with anyone who hurt that toe.  I had an x-ray with a huge metal apron covering the baby.  My final diagnosis was, "Contusion of foot, bone bruise, osteochondrial lesions, occult trabecular microfracture."  Sounds fancy, eh?  Basically they suggested I keep off the foot as much as possible, elevated and use ice to reduce the swelling.  But I did not have to have the toe "buddy wrapped" to the next toe.  Which would have involved touching the toe, which like I said, I am totally against right now.  They gave me a special shoe to keep the foot straight and unbending plus crutches to support myself. 

[caption id="attachment_2684" align="alignright" width="300" caption="Oh boy I cannot get enough of these baby pics right now. Can u tell how pregnant I am? 10 weeks from today (give or take)."][/caption]

After we had a surprise visit from Ms. Zwart, Brittany came to visit.  So we had TWO mnft (marvelous nice fantastic and terrific) visits in one day.  Maybe that's why Ellie is doing so much better today, after all the great visitors she has had, how could she not?  Our spectacular neighbor, Lindsey, watched Ben yesterday even though she'd spent the day watching her own 2-year-old, while Thom and I switched hospital shifts.  Today, Esther was somehow able to peel herself away from doting on her husband in honor of father's day to come for a visit.  This was after just returning from a trip to Florida yesterday.  Pretty darn impressive.

No new news

One of the neurologists just stopped by and checked the EEG.  The officialreport is not in, but it looks like Ellie had no seizures during the 24 hour EEG.  There were some spikes, which means the brain was set up for a seizure, but she did not actually have one.  Dr. Iskandar questioned whether or not her anti-seizure meds were actually TOO high, making her sleepier and dizzier.  The neurologist is going to check on reducing her dosage slightly to see if that helps with wakefulness.  Feels like we are sort of at a standstill, without any new answers, and we are running out of ideas for possible solutions.

Holding steady

[caption id="attachment_2502" align="alignleft" width="300" caption="Smiley girl."][/caption]

So today it feels like she is sort of holding steady, rather than the downward decline we were seeing earlier this week.  Plus, she has moments where she is better able to speak and communicate.  Still no answers and still hooked up to the over 24-hour (at this point) EEG.  I think her sodium has been holding steady at 151, but I'll have to check on that. 

Great big thanks for a wonderful lunch visit and delicious food from Jennifer, which will probably last us all weekend long!!  AND a big load of gratitude for all the yummy treats made by Brittany.  AND big thanks to Lindsey for bringing me over some yummy Indian eggs, they hit the spot.  You all are spoiling me!

I was thinking last night how perhaps instead of worrying about Ellie and trying to figure all this out, I could focus on Ellie laughing at jokes or getting the giggles for no apparent reason.  Because focusing on her getting worse or trying to figure this all out, wondering if she will always be this way does not in any way feel good.  I keep recalling how the Sunday before last when all the weird symptoms started (particularly leaning to the left) Ellie kept saying to me, "But I am getting better mom!" whenever I would start telling someone how she was not doing well.  In her world, she was in no way getting "worse".  That's the world where I wanna live.

Still a mystery...

[caption id="attachment_2672" align="alignleft" width="300" caption="I know you have seen it before but it is the only photo I can find of Brittany..."][/caption]

When Ellie began to awaken after her MRI and placement of the pressure gauge thingy by Dr. Iskandar, I suddenly felt highly emotional, watching her struggle to wake up feeling once again nauseated.  (You know how I feel about nauseated, we are not at all friends at this point.)  I just felt like "She has had ENOUGH ALREADY!!"  I started to tear up over the free family pizza I was ingesting.  I decided if the doctor turned around and saw me crying, I'd just explain that I always cry when I eat pizza because I just love it so much.  Dr. Iskandar came and removed the pressure measuring device this morning and the results were that nothing amiss was discovered.  We also did a chest X-ray last night just to rule out any chest infection (and because we could, they have the machines readily available), which also showed us nothing.  Next we are going to try for a longer EEG to see if she may be having seizures that we are just missing.  Dr. Iskandar (neurosurgeon extraordinaire) said that a 15 minute EEG is not likely to catch seizures, a 24 hour EEG would be more likely to do that.  He seemed a little perturbed that everyone keeps thinking it was his surgery that caused all this trouble because he is quite certain that that is not the case.  He felt that her brain is just set up to see anything as an attack right now, so any little thing could set up all the weird symptoms we are seeing.  His recommendation was to get the dehydration under control.  In a way, it was reassuring to have someone in the hospital be certain of something, whereas everyone else just keeps shrugging and shaking their heads in wonder. 

[caption id="attachment_2675" align="alignleft" width="300" caption="Lindsey and Juna."][/caption]

Yesterday evening, brilliant Brittany stopped by for a visit and Ellie suddenly perked up and was able to communicate a little better.  Yeah!  Then, today she was back to the status of barely being able to talk.  Bummer. 

Our rockin friend, Cynthia provided us with lunch yesterday,what a relief to not even have to think about or figure out what to eat!  When I arrived home from an exhausting day at the hospital, with no new answers, I found Ellie's school papers delivered by the school secretary's husband (thank you thank you!!) and a bag of bread from our favorite bread company (yummy) delivered by our wonderful friend, Lainie.  Then our super friend Karly dropped off some groceries for us.  I had the chance to chit chat with our neighbors, Lindsey and Chris who both offered to hang with Ben should we need their assistance.  I was overwhelmed with all the love and support delivered by our community of friends.   

[caption id="attachment_2674" align="alignleft" width="300" caption="Ben and Betsy"][/caption]

I had the inspiration to e-mail our great friend, Betsy C., who lives in Chicago, to request a visit from her and she came THAT day.  She told me that I have never requested that she come right away, so she knew that things were pretty urgent if that was my request.  Right now she has taken Ben to Sai Bai Thong (our favorite Thai restaurant) for a lunch date while I hang with Ellie in the hospital and Thom is at work.  I am absolutely savoring the quiet of the room right now and the peacefulness of not having toys strewn all over the room.  Whenever Betsy C. comes we all vye for her attention because she is just so fabulous.  I definately feel as if I have shifted from a despairing place to one of hope since seeing her.

what does worse look like?

Yesterday when Ellie was no longer able to speak, lying in bed drooling, just pretty much staring, I asked the resident exactly what "worse" would look like?  Unconsiousness?  Then last night she had a seizure and Thom thought perhaps that was what "worse" looked like.  We are still waiting for MRI and followed by pressure study.  There was talk of doing it yesterday but some emergency surgeries/MRIs came up and bumped us (which I am quite sure we have done to others before.)  Not many other changes at this point, Ellie continues to have a lot of difficulty talking and is back to drooling a lot (although Thom thinks this may be more due to exhaustion than anything else.)  Endocrinology thinks that perhaps the part of Ellie's hypothalamus that controls body temperature regulation may have been taken during surgery and the part that was telling her body to lose the salt (aka cerebral salt wasting).  Which would explain the low body temperature, cold/clammy feel, and dehydration, but not really any of the other symptoms. 

I have often wondered why someone would chose the medical profession, I just do not have the patience for it.  Then during one of our hospital stays, Ellie was working with Physical Therapy to  relearn how to walk up the stairs.  Two of the nurses we had previously looked on and they were as enthusiastic as we were about Ellie walking again.  I had this moment of really getting that this was why someone might choose to go into the medical field, the reward and excitement of watching someone improve.

My hero

[caption id="attachment_2665" align="alignright" width="300" caption="oh those big baby cheeks!"][/caption]

Yesterday morning, before heading to the hospital, I thought a little Lazy Jane's was in order.  Any of you who have had the privilege of eating at Lazy Jane's you absolutely know what I am talking about (yummydelicious scones and croissants).  Ben and I were having a lovely breakfast together, me interviewing him about his favorite things, him savoring all the attention.  Suddenly he told me as exuberantly as only Ben can, "This is our best day ever!"  (Although Ben looks almost identical to Thom, he gets that flair of the dramatic from my side.) 

Then on our drive home from the hospital, we saw a rainbow.  It so filled me with awe and hope.  Ben shouting from the back seat, "It's my first rainbow!!!" only added to the greatness.

Yesterday afternoon there were a couple of hours when Ellie could not speak.  She was comprehending everything being said to her, but she could not formulate the words.  You could see her struggling to get them out, but they would not come.  Now sometimes in the past, I have been able to hear in my head what she wanted to say, but yesterday not so much.  She just looked at us with wide startled eyes.  Then later in the afternoon, when she got some of her abilities back, I was so overjoyed when she was able to do (albeit a a very slow) double wave to someone exiting her room.  I mean when things seem to be dissolving before your eyes, when they come back it is like magic.  But man oh man what a roller coaster ride of emotional ups and downs.

I was thinking about the hopefulness and love and expectation I had when I was pregnant with Ellie.  About how I had a vision of what her life would be like and what our life would be like together.  I often tell people pregnant or adopting for the first time how it is so much MORE than you could ever imagine.  More love, more work, more fun, more pain, much more bodily fluids.  Never in my wildest dreams did I conceive of what she would add to my life.  I think of all that she has added to so many people's lives.  When I contemplate her leaving her physical body, which I have quite often throughout her lifetime, I know with certainty that I will never wonder if she did what she came her to do.  I see it all around her all the time.  In the way people at the hospital now use the word, "jilled".  In the way she reminds everyone around her that if she can have a funderful (fun + wonderful) day while lying in a hospital bed, not feeling all that snappy, then maybe just maybe they remember to do so too.  In the way some become more compassionate, more calm, more loving when they are in her presence.  She is my hero.

Another rainy day...

[caption id="attachment_2650" align="alignright" width="300" caption="Ben at the dinosaur display at the science museum in St. Louis. "][/caption]

Yesterday (Monday, June 14) we decided to go ahead and take Ellie in to get her sodium checked.  We were scheduled to go in on Tuesday anyway to get her checked, and we thought that if her sodium had continued to rise, then that might be causing some of her symptoms.  Thom said once he started talking to doctors, everyone saw Ellie and it was quickly agreed that she needed to be re-admitted.  The general hypothesis was that perhaps she has some kind of infection, so she is now being treated with not one but two kinds of antibiotics.  Our nurse yesterday (who just happened to be a previous roommate of our brilliant friend Brittany) tried explaining the different types of bacterias, along with the different types of antibiotics to treat them.  I tried to take it all in, but I was totally having a Homer Simpson moment where all I could think of was donuts or music playing in my brain.  At one point she noticed the not so bright look on my face and said, "Are you getting this?"  I was totally bummed when she asked me that because then I had to admit that, yeah, I hadn't really gotten much of what she said. 

If possible, it seems like Ellie is actually doing worse since our admission.  She is now drooling, barely able to talk and this morning she keeps feeling as if she has hair in her mouth.  Oh and that is in addition to the general weakness and exhaustion she was feeling before.  Honestly, I do not recall her ever feeling this bad for this long and being this out of it.  I mean yesterday when someone asked her how she was feeling, she whispered, "Happy."  In my head I was screaming, "Happy????  She never says something un-fancified like 'happy'!!"  And I think any of you who have seen Ellie in the last 6 months know that how she usually feels is "jilled" (joy + filled).  But perhaps I always feel like she has never been this bad off?  Maybe?  I don't think it is over stating things to say she is certainly not herself.

The plan is to do a full brain MRI tomorrow (that usually takes 45 minutes-1 hour and is with sedation).  Then we will be moved back to the PICU so they can do a pressure study of her brain.  Dr. Iskandar thinks that perhaps Ellie is having pressure changes in her brain that explain all of these rather unusual, debilitating symptoms she is having.  When we were first admitted, Ellie's body temp was measured at 89 degrees (normal 98.7) and her heart rate was low but her blood pressure was not as low as it had been.  One of our favorite endocrinologists came in and said they'd thought that perhaps after Ellie's last surgery, she lost the part of her hypothalamus that controls body temperature regulation which is why we are seeing her body temp so low.  As you can imagine, I am just racking my brain trying to put all the puzzle pieces together.  It feels like Ellie keeps giving us more and more clues as to what is going on, which also feels like she is getting worse every day (that thought does not feel as good as the one about her giving us clues, so I am working on focusing on that one.) 

[caption id="attachment_2653" align="alignright" width="300" caption="Ben being a T-Rex at the Science Museum. "][/caption]

One of the oncology residents or doctors told Thom that he did not believe we should be under the care of oncology services.  The thing is Ellie's oncologist is also the brain tumor expert at our hospital and she coordinates quite often with the neurosurgeon.  When I told her, because I wanted to make sure we were under either oncology or endocrinology and not hospital service (which seems to be so much more generalized than the other services that they may not be able to understand the scope and complexity of Ellie), she was appalled that someone would say that to us.  After Dr. Pucchetti left, her nurse practioner came by to say that we should absolutely be under their care as we are in here for cancer related reasons and even if we are not continuing with chemo, there is a whole scope of care outside of chemo.  Both Dr. Pucchetti and Kristin are going out of town next week, but they assured me that they would send out an e-mail letting everyone know that we definately should be under oncology's care (when we are out of the PICU).  We all talked about the importance at this point of having doctors who have a history with Ellie so there is an understanding that her current state is in no way typical.  The take-away lesson for me was that we have people here who will definately stand up and watch our backs, we are all on the same team wanting Ellie to feel better as quickly and easily as possible.

Not so sunny day....

Here is what I wrote on Sunday, June 13:

Honestly, the only reason I think any of us have been waking up in the morning has been Ben.  When Ellie woke up this morning, she sort of got stuck on the bed.   She wanted to move to the floor, but kept falling over trying to get off of the bed.  I was concerned about putting her on the floor because it felt like falling onto the bed was a better option than falling onto her hardwood floor.  Eventually, she ended up falling asleep sideways on the bed, her feet dangling off the end with her upper body on the bed. 

Since we have been home, Ellie has fallen twice.  Once on her way to the bathroom, her legs just gave out on her, the other time was a good face plant into her mattress.  Mostly she has been sleeping.  A lot for any 10-year-old, but super a lot for our Ellie.  Then when she is awake she is sometimes so exhausted, she just sits and stares.  Right now, she is doing "burk" (book + work) as much as she can.  She has a lot of shaking too.  After Ellie's surgery on May 26, Dr. Iskandar told us he did not know how much damage the last surgery caused.  I keep hoping that Ellie is still in recovery from her surgeries AND from chemo which is causing all of these crazy symptoms.  Because honestly, to me, she seems much worse than she did even when we left the hospital.  More sleeping, more shaky, less stable, more tired.  I mean this time she doesn't even seem like she has the energy to attemptwalking.  Whereas other times we've left the hospital without her being able to walk, she at least had the umpspa to try.  She hasn't even been downstairs since we returned home from the hospital.  While I have definitely had my despairing thoughts today and yesterday, there is a part of me that just keeps reaching for the thought that this has to get better, this cannot be the best we will get.  I mean after 4 surgeries, there has to be a better than this.  I feel that dull ache of dread and despair taking hold.  Wishing so desperately that I could do something, anything for her to feel better now.  Not in 2 weeks, not in a week, but right now.  And feeling helpless at watching her be so helpless.

We are home for real this time.

Yesterday afternoon, we made it home from our hospital stay.  Ellie's leaning to the left remains a mystery.  We felt like we had done everything hospitally possible to figure it out, so it was time to take her home and see if she is able to get some of her strength back there.  At home she is much more motivated to move around which if the leany left is due to weakness would be naturally corrected there.  Then we were shocked to learn from a neurologist that sleeping alot after 2 brain surgeries and 10-12 rounds of chemo is not that uncommon.  I mean after every other brain surgery, Ellie has been awake awake awake, sometimes for days. 

We had a home health nurse come to draw Ellie's blood today to check her sodium.   Unfortunately, it is on the rise (156, up from 152 yesterday, normal range 135-145).  Getting her blood draw at home was pretty stressful for Ellie as she was in the middle of doing burk (book +work) when the nurse arrived.  Typically at the hospital, the phlebotomist (person who draws blood) does it quick.  Because for Ellie, it is the anticipation that is so  much worse than the actual poke.  She does amazingly well with the poke.  Anyway, with the home health nurse's questions and checking it took 25 minutes of torture for Ellie and me before the nurse was ready to even attempt the poke.  Then she couldn't get any blood to come out because Ellie is dehydrated (high sodium = dehydration).   So she had to try twice.  At one point she started telling us about a 4-year-old who had a blood draw this morning.  I am not totally sure, but it seemed as if the point of the story was to say that, "Wouldn't it be so much worse if you were 4 having a blood draw than 10 having a blood draw?"  Similarly, after Ellie's second brain surgery in a week, I mentioned that she had had a tough week, because it just seemed like everyone was being so dang loud.  Anyway, the nurse said something about how she had seen some patients who had had 15 surgeries.  I am pretty sure that I could have easily topped these stories.  I mean we had one hospital stay where Ellie was getting a blood draw every hour.  And we started all this business when she was 20 months.  And I am somewhat certain that Ellie has had 15 surgeries, although Thom is the one who keeps a running surgery total.  What makes me madder than a wet hen (and are wet hens really mad?) is the whole thing that telling me someone else's tale of woe will make whatever challenge we are currently facing better.  It just doesn't.   Just makes me grumpy.  And wonder what assumptions this person is making about me and my family's experiences.  And then when I think of Ellie.  How she lays up in that hospital bed and tells everyone how "jilled" (joy + filled) she is and does everything in her power to spread her joy even when she herself is not feeling all the great, I just think she does not need to be guilted into acted the way somebody else wants her to.  And if we are having a moment of challenge, then I wish that we could just have our moment without comparisons to anyone else's experiences.  Plus who wants to be portrayed as the family that has it so bad anyway?  The one that all others can use as a yardstick that their lives are better.  Ugh.  I mean we ALL have challenges to face, right?  I guess it is all an excellent reminder of the power of truly listening.   The times when I have felt completely heard by whomever was around me have been transformative.  Powerful beyond words.  Allowing ME to, at times, come to the conclusion that maybe just maybe things are not as bad as they seem and that there are many parts of my life for which I am greatful and would not change.

A crayola miracle...

[caption id="attachment_2631" align="alignleft" width="300" caption="Ellie, Ben, and baby Tabitha"][/caption]

The MRI from yesterday did not show anything that would indicate why Ellie is suddenly leaning to the left.  So the two viable hypothesis we have are that the left side is just weaker than the right side OR that she might need more steroids to stimulate her CNS (central nervous system).  Thom and I were feeling like since we have explored every possible option as to what else the leaning could be through neurology, endocrinology, MRI, neurosurgery, that going ahead and taking her home is our best option.  There she will feel more motivated to move around and get back her strength. 

Speaking of MRI.  Before yesterday's MRI, Ellie kept talking about how she really really wanted to get back to the room to peel more crayons.  Because of my pregnancy, they will not allow me to go into the MRI room with Ellie.  From numerous MRIs, it seems like she has a lot of friends in that department, so I am never too worried when she goes in by herself (ok a little bit, but I know she is surrounded by friends).  Plus a quick brain MRI takes approximately 2 minutes.  When Ellie was wheeled out of the MRI room, she was laying on the bed, holding 2 sets of crayons in her hands.  I did not realize that MRIs now produce crayons, it's a medical miracle!  Ellie was much calmer just having those crayons in her hands and thoroughly looking forward to putting them with her other crayons. 

[caption id="attachment_2630" align="alignleft" width="300" caption="Super happy Ben"][/caption]

Sodium has been rising a bit, we were at 147 (up from 145, which is in the normal range 135-145) this morning.  So making minor adjustments to keep that where we want it.  Otherwise everything is looking good. 

A great big Happy Birthday to my lovely, smart, compassionate niece, Sophia who is turning 6 today!  When we were in Memphis over New Year's, Sophia and Ben would fight over who would get to help.  I just love this phase of so wanting to help and believe me, I work that angle right now as much as I possibly can.

Living happily ever after

[caption id="attachment_2623" align="alignright" width="300" caption="Kip and Patrick visit in 2005."][/caption]

Yesterday upon arriving home, I found a package with MY name on it containing Aveda products (those delicious shampoos and face products).  PLUS some lovely 8x10 photos of Kip, Patrick, Kirk, Agogo & Moffat.  Oh yeah, and Oprah (from when she was in NYC for a benefit walk).  I have hung some of the photos in Ellie's room so that she can look at her uncles from her bed.  Kip has a Yankees baseball cap on in some of the photos and Ellie cannot for the life of her tell who the heck baby fire is in the picture.  It's been kind of a fun game all day.  Who the heck is THAT guy.  And Ellie will say, I have no idea!  She is however, able to identify Patrick Kyle with his sunglasses.  Now all day long I just keep smelling the wonderful shampoo on my hair that Kip and Patrick sent.  And I feel rich rich rich.  I feel like saying to everyone I run into, "Yes my toe still hurts, but gee doesn't my hair smell terrific!"  It's quite a nice distraction. 

[caption id="attachment_2622" align="alignleft" width="300" caption="Kip and Patrick on a visit in 2005."][/caption]

Sodium is back in the normal range!!  We were at 145 this morning (135-145 normal).  We realized yesterday morning that some of the meds she was on were from back when we were worried she was diabetes insipidus (dropping her water), so it was a med telling her body to hold onto her salt I think).  When I mentioned it to the endocrinologist, she was shocked that we were still giving her that med.  Then the afternoon nurse noticed that the supplement we were giving Ellie had electrolytes including salt in it.  So we eliminated those two which may have helped with sodium.  How refreshing to have 2 simple easy things to do that seemed to have caused an immediate result.  

This morning our great friend, Lainie, offered to take Ben to the fire station with her children.  Well when she arrived, Ben was in the midst of eating his breakfast and just could not tear himself away from the wonderful cinnamon swirl toast I had prepared for him.  (Yes, I am quite the morning chef.)  So Lainie convinced her children to stay at our house for a playdate.  Her son, Gavin, was enthralled with our new tiny turtle.  He explained that he will be getting a turtle for his birthday (I am not so sure his mom agreed with that prediction.)  I mean wow, to cancel a trip to the fire station was way above and beyond.  THEN she asked me if she could start some laundry or do some cleaning for me if the kids were all occupied.  I felt like she deserved a raise.  Before I left Ben asked, "Before you limp outta here, can you give me another snuggle?" 

We had a mnft (marvelous nice fantastic terriffic) visit with Jennifer at lunch time.  Then Brittany came at just the perfect time this afternoon, right when Ben was ready to leave Tyler's Place (sibling care).  She was also around when Ellie went down for an MRI so she was able to stay in the room with Ben.  Finally she was around and able to stay in the room with Ellie while Ben and I went to get a yummy family meal before they ran out. 

So yes we have had an MRI just to rule out anything for the leaning to the left.  Rehabilitation seems to think that her left side is just feeling weaker than her right side.  But it doesn't explain the sudden onset of the leany to the left.  I am hoping that the MRI will have an actual arrow that points to what is causing the leaning and it will be something easily fixable.  And then we'll all live happily ever after.

Lefty leany

Yes we are still here in the hospital.  And yes we are a bit grumpy about it.  Ellie's sodium continues to be on the rise, even though we have increased the amount of water we give her (more water should equal less sodium and vice versa).  We had been able to get the sodium down to 150 (average range 135-145), then she started elevating again this morning to 152.  Also, 2 days ago Ellie started to lean to the left when walking.  that progressed to leaning to the left even when laying in the bed and having difficulty sitting up because of the leaning issue.  There was talk of us going home today or tomorrow and I have said that I do not feel comfortable taking her home with the leaning issue.  I mean we have taken her home before when she has not been able to walk, but it was always an issue of regaining strength.  My concern is that she could easily fall and injure herself, particularly when she is unable to even sit up without falling over.  No one seems to have any idea why she would be leaning.  Our neurosurgeon thinks it may be to little steroids.  Physical Therapy thinks maybe she needs to wear her shoes.  Endocrinology just stopped in and they think the whole steroid idea helping with CNS issues is something that we do not fully understand yet.  Nobody really knows what to do.  I have requested a neurological evaluation just to rule that out out.  Because I cannot imagine going home with the issue this severe without us immediately coming back.  I tried googling "leaning to the left" but mostly came up with political websites.  Even searching for neurological leaning to the left did not produce much.  So that is where we are today.  More questions than answers.

SuperBen

I was thinking today that being in the hospital is sort of like finals week.  You feel isolated from the rest of the world and consumed by the whole thing.  You have to devote all of your time and energy on this one task, pretty much putting everything else in life on hold.  The difference in the hospital, is that there is no end date and you never quite know when a hospital stay will happen.  But I also suppose there is no "grade" either so you can keep trying again until you get it the way you want it. 

Ellie's sodium is back down from yesterday, although still slightly elevated.  We have increased her steroids to help her feel more wakeful and will be slooowly tapering her back down over the next few weeks.  Talk is of going home tomorrow (assuming no drastic changes today). 

Ben has been struggling a bit the last few days.  I think maybe he is just exhausted and missing us.  Right now, I think he is really looking forward to all of us being together again at home, because when we are in the hospital it is rare that all of us are together.  He is so good at picking up on how we are feeling and acting that out or trying to make us feel better.  I imagine it has been somewhat exhausting for him as Thom & I have not been our usual perky selves much of the time.  I know at least for me, I have been up and down emotionally, sometimes so exhausted the thought of making him another meal and then cleaning it  up makes me sigh heavily.  I was also thinking of how challenging it must be for him to be in Ellie's room right now when we are constantly asking him to be quiet, sit down, don't jump in that drawer, etc.  Plus his whole life is rearranged for his sister.  I feels so fortunate that typically he just rolls with it, but I know that there are times he wishes he could do more of what he wants to do.  As so many 5-year-olds, he wants to be the "good guy", he just thrives on helping out.  What an unexpected change to suddenly feel like the "bad guy", at least in the hospital room.  We talk a lot about good guys/bad guys lately because so many of the books and movies geared towards his age have them.  He wonders why anyone would want to be a bad guy.  It just does not make any sense to him.  He has definately been a super hero throughout this year of hospital stays!

So for sure NOT today...

We are having some strange symptoms, like feeling "tippy" (maybe dizzy?) while laying in bed.  Our oncologist was in the room when Ellie told us she was feeling tippy and then her eyes sort of started zipping back and forth.  It was not like anything I'd ever witnessed with her before.  Anywho, with the having trouble standing, sodium rising, and now this latest episode, we are for sure not going home today.

So maybe today...

Ellie was having a hard time staying awake yesterday/today and she was having trouble walking/standing and her sodium has suddenly shot up.  So we are still here.  We may still be going home today but there is talk of physically moving us off PICU to the floor.  That's all I know right now.

The sun'll come out tomorrow..

Ellie in sunny Florida.

Believe it or not there is talk of us going home tomorrow!!  Yes, tomorrow.  All tubes have been removed, and we are just waiting to see what her electrolytes do over the next 24 hours.  We have been moved down to "floor status" from "PICU status" but are physically in the same room (b/c there are no other rooms to actually physically move us into to.)  Ellie is still pretty weak and having trouble walking, so it will be good to be home while there are 2 adults over the weekend.  Then we'll figure it all out on Monday.  
Ben is hanging out with us in the hospital room (almost said "hotel" room, because I like to pretend...) he was missing us a bit today after a busy busy week of playdates and sibling care.  I remember when Ellie was first diagnosed, how nervous I felt just being in the hospital room by myself with her.  Now I can have 

Thom and Ben searching for shells in sunny Florida.

both kids in the room with me with one on the way.  I am inspired by my friend, Lainie, who has 2 kids, 3 and 5, but never balks at taking on another 5-year-old boy, EVEN when she has already agreed to watch two 6-year-old neighbors.  She just tells me, "What's one more?"  And even yesterday told me she wished there was MORE she could do to help us out, even though she had done us a GREAT service by taking Ben for the morning.  Amazing what you can do that you don't think you can and how your perspective on what is possible can change. 

Right now Ben's eating cream cheese for lunch (he is from Wisconsin, after all, and while that may not be acceptable in other parts of the country, it counts as a lunch here in the dairy state.  But hopefully no nutritionists will stop by to take away that fantasy...)  Thanks again for all of your love and support, playdates, and chocolate (Esther brought me emergency chocolate, the really really good stuff.  Some of you know what I'm talking about...Susan, Ghany, Dan, Sara, Kip, Patrick, Cynthia, mom.... ) 

And now back to my toe....

Here  I thought I was getting soooo sooo boring droning on and on about my hurty fourth toe.  But I have received 3 e-mails inquiring about how my tiny toe is doing.  Little did I know it had such a fan base.  I hurt it by running into the cedar chest in our bedroom.  Which did not seem that unusual as at this point in pregnancy, everything but everything seems to be getting smaller.  The toe is doing so much better, less swollen and less purplish now.  Still working on keeping my weight off of it, because it continues to be somewhat sore, even after a week.   Often around the hospital I have been utilizing the numerous wheelchairs available.   

Today I was all ready to pull out my inner Carol Burnette mom to get these breathing treatments up to every 4 hours.  I was preparing myself, imaging what I would say, the stance I would take, etc.  Then much to my surprise, I came in this morning and NO MORE BREATHING TREATMENTS!!!!  Not only that, but the big old nose breathing thingy is out!  Ellie is feeling jilled today and just keeps smiling.  And smiling.  And telling everyone how jilled she feels.  It is so much easier for her to talk and smile without the huge nose thingy and tubes emanating from it.  Yesterday we were doing breathing treatments every 2 hours and Ellie was bugged by the nose tubes and the head bandage.  Ellie would say to me, "I want all of these things off!!!"  And then the struggle with the breathing treatments (they seemed more like non-breathing treatments, because usually Ellie would hold her breath, she was so scared).  At one point during a breathing treatment, one single tear rolled down Ellie's cheek.  It felt like I was in a movie, it was so dramatic.  Fortunately, Brittany was with us so she could take over encouraging Ellie as I wept quietly.   What a difference a day makes.

a better day...

[caption id="attachment_2597" align="alignright" width="300" caption="Before Ben was a man..."][/caption]

Ben had such a good time with our great friends, Cynthia and Caitlyn yesterday that they asked for a repeat this afternoon!  Cynthia told me lots of Ben/Caitlyn stories from yesterday.  About how when they did have disagreements, they were finding ways to work them out.  Caitlyn had a Little Gym class, which Ben watched with Cynthia.  He was amazed because there was a baby there named Ben.  He kept rubbing the baby's head and telling the others that this is what I do to put him to sleep every night.  Even when he was a baby the old head rub is what would send him off to sleepy time when nothing else worked.  He told everyone that when our baby is born, he is going to rub the baby's head to help him/her get to sleep (sort of practice runs with any babies he sees now.)  Then this morning, as we were riding the elevator, Ben sort of put one arm up on the side of the elevator with his leg crossed.  When we stopped by guest depot to get him a bracelet for sibling care, he told the woman working there that today he is a man.  Not exactly sure what that means, but he seemed pleased with himself. 

Yesterday we had a lovely visit with both Brittany and Ellie's teachers from last year, Ms. Zwart and Ms. Mack. AND they brought home made chocolate chip cookes, which during our last stay, I think Thom sustained himself for several days on Ms. Zwart cookes.  Then today at lunchtime we had a visit from Esther (who for some reason, Ben is calling "Jennifer" right now.) 

At one point, a young resident stopped by and I requested that we move the breathing treatment from every 2 hours to every 4 hours, as had been discussed with me the day before.  He told me he was going to get on it.  I should have known that residents do not have the authority to make such promises, only higher ups like the attending can do that.  So, yes, we are still on every 2 hours.  But we have decided that we are going to on having a pma (positive mental attitude) about the breathing treatments which will make the whole experience easier for both of us.  We are down from having to do 2 different, but equally annoying, treatments to 1 treatment type each time.  As my wise, sister-in-law, Sara, pointed out, Ellie oftentimes does not remember much from her hospital stays.  Ellie was able to have her "turban" or head bandage removed today much to her delight.  And she seems to be feeling less nauseated today than she did yesterday.  Her sodium and potassium keep jumping around on us, so we have been keeping a sharp eye and responding accordingly.  Oh yeah and she did have a pretty good night's sleep, so she looks a little less haunted today.  Right now, Ellie keeps looking like she is going to fall asleep, and then any noise in the room or outside the room makes her eyes pop right back open.

Back to no sleeping...

Right now Ellie is sitting in bed, head bandage a bit caddy whompus after 4 days, giant calendula in her nose (that's the oxygen tube), with huge bags under her eyes.  Her face did not swell as much this time.  But she is so tired that she looks sort of haunted.  Lots of staring spells.  It is hard for her to sleep as every few minutes someone comes into the room.  Sort of to be expected after a holiday weekend.  Even a fly just flew into the room.  And if not a person coming into her room, there seems to be lots of beeping from her monitors/IVs.  Ellie keeps telling me that she feels yucky, that her stomach hurts.  Dr. Iskandar said that may be due to air bubbles in her brain from when he took out the cysts.  Respiratory therapy says it may be from the breathing/coughing treatments putting air into her stomach (yet another reason these breathing treatments are my nemesis right now).  I really don't care why her stomach is hurting, I would just very much like it to not be hurting any more.  Ever.  Ugh I hate feeling nauseated.  And nauseated with a headache.  Total bummer.   These freakin' breathing treatments are bumming me out.  I know I was going to think of better feeling thoughts about that, but I'm not quite there yet.  They so make her gag and stress her (and me) out.  Seriously I have never seen a fly in the hospital before, and now there is one zooming around our room.  Weird. 

We have had the greatest nurses this time.  Ones who are kind and smart and patient.  Just the best.  That certainly makes the day go much more smoothly.   I told our nurse yesterday how whenever Ellie is uncomfortable/in pain/nauseated, in my head I become Carol Burnette in that episode of Mad About Youwhen she played Helen Hunt's mom while Helen Hunt was giving birth.  Carol Burnette freaked out about her daughter being in pain, as only Carol Burnette can.  So all day, if Ellie seemed uncomfortable, we would say, "We don't want Carol to come out!"   

Ben is on a playdate with his friend Caitlyn (and her mom Cynthia) this morning.  He was super excited to see her again and kept asking me when he could go on another playdate.  He also asked me when we could stop going to the hospital last night.  I told him not tomorrow, but sometime soon.  Guess he's getting a little tired of all the hospital stuff too.  Great big thanks to Cynthia to agreeing to a playdate even on a day that is already busy.  (Cynthia sent me an adorable photo of Ben and Caitlyn on a previous playdate.  I cannot seem to locate them, unfortunately.  Cynthia, could you please re-send them to me so I could post them?  Cynthia is super organized, so I am confident she will be able to find said photos.  But "watch out" as Ellie would say, Ben and Caitlyn together is extremely cute...)