Patience - Day 132

We've been in-patient at El Camino Hospital for 5 days now.  Ellie's 2nd of 4 High Dose Methotrextate administrations for Interim Maintenance was completed late Friday night.  We then sit and wait for it to clear her system while she is continually hooked up to a hydration IV in her port.  The hydration gives her a mixture of water, saline, and dextrose (sugar) to help flush her system and maintain kidney functions as best as possible.  She cleared in 48 hours two weeks ago but has been much slower this time around and as of now it isn't guaranteed we will get out tomorrow (Tuesday).  We get a new data point about twice a day regarding the drug level in her blood and her creatinine levels from her kidneys (elevated creatinine would mean her kidneys are struggling).  While El Camino is definitely the place to be for great care on "expected" in-patient stays, the labs still have to be shuttled up to Stanford for analysis and then shuttled back to us with results.  The couriers, as we have gathered, are anything but expeditious with this process.  (Funny how it takes me about 50 minutes to drive round trip from Redwood City and yet it takes them a solid 4 hours)  At the 24 hour data point, we were at 47% HDMTX and are currently sitting on a solid 0.25 heading into day 5.  We need to be below 0.1 to get discharged.  Hurry up n' Wait.

Polly has done an incredible job of finding ways to pass the time.  The highlight of this stay has been to go down to the 1st floor (cannot miss us en route as we bring our friend the 50 lb IV pole, pump, and assorted liquids with us) and peer in the window of the gift shop where they have the holiday decor up and in full bloom.  There is a small automated roller coaster where the cars get dumped off a conveyor belt of sorts and then get flung down the coaster's course.  She shrieks with laughter everytime she sees it.  After 20 minutes of staring in the window, a visit to the baby grand piano that plays itself is (of course) next.  While the music is really good, Ellie's main concern is "Where man playing piano, momma?"  Here we get to respond with whatever we desire and perhaps the remarkable thing is that no matter how thorough the response where stories of how the man is invisible yet able to play while standing on his head.....or the man left to get something to eat.....or there is no man, it is a magic piano....it is 100% guaranteed to be followed with her saying back to us (and in unison with Timmy when he is present) - "WHHHHHYYYY?"   If I ever see that courier, I am going to ask him how long it took him to get us our results back, listen to his lame excuse, and then have T & E do their "Why" rebuttle in full glory.  When the Twins go 2v1, we all have little chance.

I watch Timmy find ways to occupy himself when Ellie is not around and he certainly is not the same cheery guy without her.  He has fun, don't get me wrong, but he is starting to get slightly annoyed with her disappearing acts recently and of course he doesn't quite understand.  They say twins have a special connection.  I am your witness here that this connection not only exists but is quite strong with these two.  The first thing he asks about when he wakes up in the morning is "Where's Ellie?" and he wakes up far more often late at night when she isn't around.  In the last few weeks, he has shown her much more affection than before with hugs and sharing of his toys if he has tow items and can spare one.  When we get down to the parking lot to go home from the hospital, he asks all the time to look up to the window on the 4th floor to wave bye to her.  Ellie meanwhile can sit all day and look at pictures of her and T on Polly or I's cell phones.  We've recently learned how to send quick videos over our cell phones (yes, slow on that technological account) where both watch each other on the screen and then just look up after its over and say "Again".  It's something small in the course of the day, but when we have time to sit for several hours in the hospital by yourself in Polly's case or in mine at home....out of all the terrible things that have come our way in the last four months, these two bonding with each other has been an amazing gift to behold.  With cancer in our midst....we consider ourselves very fortunate.

I lost sleep a year and a half ago about what kids may say to Timmy about his eyes when he reaches elementary school.  He is so fun loving now and knows no cynicism whatsoever that it will be a tough day when he first realizes the person speaking to him may be saying something that he doesn't like very much.  Cancer has taken a lot of the worry away from this forethought. (Ironic, isn't it?)  I'm sure we'll still have some battles to fight with playground banter, but the fighting spirit we see developing exponentially with Ellie while she conquers this thing coupled with the simple yearning Timmy has to make sure she isn't too far away provides great comfort that these two already know they have one another to lean on when rough patches pop up.  As I see in the high school world daily, positive reinforcement from peers far surpasses anything we adults can do quickly when it comes to building a healthy social environment for the kids involved.  They have each other.  Even when we are a few cities apart by necessity (certainly not desire), they have each other.  T & E have an uncanny way of providing relief enough to help our family patience on nights when we just all want to go home.  This is a long, very tough road.

Time to sleep and think up all new ways to craft patient answers around the best smile inducing question in a two year old's vocabulary - WHHHHYYYYYY?