LightBuzz - Day 652

We have had a helluva last 24 hours.  All the progress made through last week in terms of Ellie getting over this seemingly endless stomach bug was lost as of Friday and we were back to square one....frustrated and worried one notch higher each time we are sent back there.  For weeks now (WEEKS), the docs have been telling us these are just normal viruses working on a compromised immune system.  I just don't buy this "she may be sick for a month" theory.  We were doing our best to soak it in with a good deal of blind faith last Monday as the Doc was telling us about it following our Sunday evening 5.5 hour ER visit.  My gut tells me something different here and it has with Polly since she first started throwing up now almost 4 weeks ago.

Days like today have not happened since Delayed Intensification a year ago January.  What is interesting about the human reaction, as I have observed, is when problems are compounding quickly over a period of only hours, we (or at least Polly and I) go into this basic survival mode.  In the moment, there are basic things that need to get done, there is no time to speculate on what could be nor waste time with small talk (doing our best to not be rude, of course), we will seek whatever information is necessary, and we will contain the emotion until an outlet presents itself so not to affect Ellie.  If you do not take care of right NOW, what is the point of talking about tomorrow when the current fray is a step beyond frantic?

Polly and I had rare dinner plans last night without the kids and were on our way just after 6pm.  Polly's parents had come to pick them up and take them to dinner, so we were free for a few hours.  Flashback to earlier in the week, after Ellie received hydration Monday and Wednesday, her upset stomach was better but she still lacked the energy missing from her normal spunky self as has been the case for the last few weeks.  She had been eating a little better giving us hope this was all coming to a close and had only had one queasy moment since our night in the ER.  And then the more regular vomiting started again on Friday, this time with excruciating screaming in the process.  She woke on Saturday morning happier again and willing to go out with Polly to the barn to try riding a bit but what begins as a pleasant morning now typically turns after a few hours.  She gets very quiet, starts to cling, then refuses to be touched by anyone, lays on the first flat surface she can find and doesn't want to move.  A nap helped a bit and then it was off with Polly's parents for the evening.

We hadn't been at the restaurant longer than 20 minutes when Polly's mom called and told us to come home.  Ellie was not the issue though.  Polly's Dad had fell very ill all of a sudden and a decision was made to take him to the ER.  After we raced back, Polly and her mom went to the ER and I took the kids home with Ellie looking greener by the minute.  While getting both kids ready for bed, Ellie went into her floor isolation mode, though I was able to coax her up to the couch.  The next 10 minutes was a combination of her moaning/pointing at her stomach while Timmy found multiple things to knock over/pull down simultaneously to just create the most wonderful scene of chaotic noise you could imagine in one living room.  Mickey Mouse On Demand calmed things down to a dull roar and at least priorities could be made.  Ellie needed her nightly chemo pill.  How to get a small white disc, that incidentally is toxic to many parts of her body, into a screaming child who doesn't want to be touched....a dilemma I can smile a bit about now but don't find the least bit amusing.  There is nothing to prepare you for things like this.  Polly was able to come home having gotten her Dad in the ER cue (which by the way was a packed house for a Saturday night - of course it was, would you expect any different in this story?).  In the time it took for Polly to get from Stanford to our house (about 15 min), Ellie had poured out the entire contents of her stomach in our bathroom.  I know this is tough to read.  It is tough to write.  I hate cancer with every living cell in my body.  Thankfully I hadn't given her the chemo pill yet, which she took a little while later after Polly had gotten home and things calmed down a bit.  Fearing dehydration and with knowledge that she hadn't peed since the early morning, the oncologist told us to go to the ER.  By 10pm, Ellie was checked into a Stanford ER room about 50-60 paces down the hall from her grandfather, in a room of his own.

I owe a big THANKYOU to my colleague and friend, Jen, who came over late to hang on the couch while Timmy slept, so I could head to the ER and help where possible.  Both Polly and I know there were many others out there who would have done the same.  That means the world to us.  Thanks to Jen and to the rest of you who flooded us with offers earlier today (Sunday).  With much respect for my father-in-law's privacy, I will say that after 20 hours in the ER and many tests that all came back negative, he is resting at home now and doing much better.  Even in his own time of need, he was asking about Ellie which even by my mentioning doesn't even do justice to the size of his heart when it comes to thinking of his family before himself.

The ER attending doc the second time around (in 7 days) was much more in tune with the oncology world this time. (Thankful!) It was obvious Ellie needed fluids and those were started into her port fairly quickly once we got to the room.  Her stomach X-ray was clear and her labs came back as they have all week, in the expected normal-for-her range. You should know there is never a normal lab report I do not love to see.  It is never a given and it will never be taken for granted.  When those white blood cell numbers are in the range we hope they should be, you say a prayer of thanksgiving and find time in the not so distant future to pay something forward.  There isn't a choice in the matter.  It is a duty.

The doc sat down for a good 15-20 minutes with us to talk about possibilities for this stomach ailment.  A conversation we sort of started last Monday following our Easter ER trip with our regular Doc but still were told a wait n' see approach was best.  We finally had a G.I. troubles discussion and where various things could be going wrong.  One thing was coming clear, it is time we had gastro specialist come into the mix which we will try to do tomorrow.  Ellie fell asleep after she got her fluids and was at peace for the first time since the morning.  We accomplished getting her chemo pill into her system and ceased the vomiting with an additional dose of Zofran (nausea med).  We knew this ER trip was mainly for hydration purposes, so at long last by 2am it was time to go home.

Polly and I got about 4 hours of sleep until the Timmy Alarm went off and both kids were up early this morning.  Ellie was doing OK but the same pattern with lack of energy was still going on.  Again.  She ate a little but spent most of today on the couch not moving.  She was able to go to the bathroom a few times which was reassuring but her stomach pain increased again.  I took Timmy to the park to blow off some energy with another friend, got both kids down for a little nap, and then it was time to get Polly's parents home from the ER.  Ellie's uneasiness was starting to grow again as the afternoon wore on and her usual stoic self was giving way to a very painful cry.  If you recall, this is also her monthly steroid weekend which could not have come at a worse time.  On a good day, she is still irritable with Prednisone running through her veins.  Having to be "On" now for close to 16 hours (minus 4 hours of sleep in between) was and still is taking its toll for the both of us.  Trusting our gut that something was still wrong we made another call to the Doc at about 4pm this afternoon.  She wanted to try something new to help.  This is where the power of prayer has come to be an incredible force that shows itself at opportune times for us.  I get a little weary of putting out notifications to the facebook world about how Ellie is doing as if our problems are more important than anyone else.  But I also know that the army of people willing to stand with Ellie in a space and time proper for their own world of thoughts helps her even if just by a little bit.  I believe that.  Every little bit helps.  I will be thanking you in my own way when she it makes to to Monday and I will be thanking you even more when she blows out the candles on her 10th birthday cake.

Back to the Doc's suggestion...there is a somewhat lesser seen side effect possible from Prednisone which is acid reflux.  We have not seen anything of the sort in over a year on Prednisone.  It could even be that if this is truly what she has, it could have started weeks ago for a different reason not quite known.  Anyways, she (the Doc) had an instinct to prescribe a quick pickup of Zantac to reverse a possible acid reflux going on.  Ellie, who had been screaming at the top of her lungs for the better part of 4-5pm today because she was in pain, took the first Zantac dose at 5:15pm.  By 5:20 she was a completely different person.  She looked up from the couch, smiled, got down and came into us in the kitchen and announced she was ready for pumpkin pie.  Wow.....Wow Wow Wow.  For tonight, calm has been officially restored.  We are not our of the woods with the stomach issue yet.  We need to get through a full day of normal eating, drinking, and behavior before that happens.  But I feel like we got back to the barracks today exhausted and ready to collapse but with a small yet quite significant victory despite it not being very pretty outside.  Very very thankful for that.

I turned 37 today.  Hopefully Polly and I will be able to repeat that dinner from last night sometime very soon.  This blog post tonight could have very easily had a different tone or perhaps not even written had we not found the magic acid reflux elixir right before dinner.  I have not had a chance to respond to all of the wonderful birthday well wishes on facebook today but I want to say thank you for the great thoughts for me and my family.  The blog tonight was more of a self needed transition out of survival mode with an attempt to ease back into a daily routine (so hoping that is true) tomorrow with Ellie and with the fact that spring break for me is now over thus beginning the whirlwind final 8 weeks of the school year.  Needless to say, I would trade any gift received today for a promise Ellie will not have to ever suffer again the way she did this weekend.

I suppose there have been better birthdays.  But you know there were three moments that made the day today which bring as much significance to 37 as any other year prior.  They filled me with a sense of love and gratitude which help to refuel the tank, aid in licking the wounds so to speak, and get me fired up to go right back out there tomorrow.  One - my parents who are the reason I am who I am today support whenever and however they can.  They also never miss a time to call and say Happy Birthday.  Two - in the chaos of trying to calm Ellie this afternoon and keeping Timmy below Deafcon 3 on the energy level while I was out picking up Polly's dad and doing a quick grocery run, Polly pulled up "Toy Story" On Demand through our TV cable for the first time.  Timmy, who has "Buzz LightYear" pajamas but has never seen the movie, only knew who Buzz was because we all call Timmy that when he wears them.  Sometime ago we also pointed out the Buzz action figure in the window of a toy store we passed by.  Again, he was intrigued but without proper background didn't think too much of it.  So tonight when the movie came on, he was not fully aware what he was watching.  If you know the movie, you will recall that Buzz does not make his initial appearance until about 15 min in.  As the movie starts Timmy sits dazed watching.  (No big thang, mom, where the heck is Meesca-Moosca Mickey Mouse????)  When Buzz finally comes on the screen for the first time, we had ourselves an Awakening in our very living room. The sun came up, the trumpets were heard for miles, and the Hallelujah chorus was deafening.  Timmy came flying of the couch pointing at the TV and yelling - "LIGHTBUZZ, LIGHTBUZZ, MOMMY, IT IS LIGHTBUZZ".  For the rest of the night, he was standing with his legs spread and his hands on his hips telling us he was about to blast off, even hitting the fake buttons on his pajama top while getting ready for bed (well seriously, after the awakening, what do YOU think he was going to wear to bed?), and attempting to bellow out "To Infinity and Beyond" (came out more like "To Ifnitty and Bond!").  Goodbye Thomas (ok, not so sad to see Thomas replaced in all honesty), Goodbye Bob the Builder (do like Bob though, he authors short books), and Hello Toy Story.  Timmy's smile and enthusiasm is both renewing and resilient....wise beyond his years.  When Ellie is with him, he is very visibly whole again.  Three - we ended the night taking dinner another friend has delivered to us (thank you Sheila!) up to Polly's parents house for an unplanned impromptu Sunday Night Dinner with everyone present.  The topics discussed?  Ellie's small temporary yet slightly miraculous recovery, the incredible emergence and quite hysterical addition of LigthtBuzz into the family, and a serving of birthday pumpkin pie for dessert.  My mom will tell you I don't like Pumpkin pie.  She would be right.  But it is Ellie's favorite and therefore that's what we served tonight with three candles blown out in one joint powerful breath between the twins and myself.  I wouldn't have it any other way.  Words cannot express the thanks to God for somehow bringing us all back to the table tonight to enjoy a little bit of Now.

Thank you for all the continuing prayers.  We made it to Monday.  And it is even starting to rain as I finish this, leaving the door open for some dancing in the morning I suppose.  We have more things that have to be figured out this week on Ellie's treatment front with her stomach issues but we will get there.  You will never see anyone work harder to that end in his 38th year than I will in the months upcoming.  If you see Polly this week, please give her a hug.  She is the strongest person I know and I am very lucky to be able to stand next to her through all of this.  Monday - check.  10th Birthday - Upcoming.  Infinity & Beyond - A steadfast promise.