Shepherd - Day 1237

"The Lord is My Shepherd...there is nothing I shall want"

~~ Psalm 23 ~~

I have been thinking about this particular verse for a couple weeks now.  You get to a point some days where things are rolling.  I mean going good enough where it feels possible to take in every color, scent, taste, and meaning from the day.  You know....because I have supposedly mastered this by now.  No big deal.  I can cruise around in the truck with the window down and tunes up to a slighly obnoxious volume.  Fist raised and pumping ever so appropriately to the beat in between sudden bursts of joy as I sit at a stop light with quick glances at my fellow red light neighbor who should be singing too if he knew what was good for him.  "SHEPHERD!!!!!!!"  Oh yeah....seizing the moment now.  "NOTHING I shall WANT, PEOPLE".  The light turns green with now a slight horizontal rocking taking place within the torso of the vehicle where I have been known to attempt several dangerously rad 90's dance manuevers whilst still in the confines of my car seat.  Another glance at my brother by traffic light..."CAN I GET AN AMEN???".  Not to worry I answer my own questions in the affirmative in scenes like these.  Instantly it dawns on me that I should be taking my talents to "The Voice"...but we'll save that for another blog post.  No need for outside interference.  I am rockin and requesting a ghostrider tower fly by.  I am in the zone.

Change scenes now.  4am, Sunday morning, so many days later.  Really it could be a few or a few hundred....does it really matter?  Ellie is screaming.  Her stomach has hurt since Wednesday.  The doc said yesterday at Urgent care it was "just a virus" (god, I hate that response from the medical world).  But here we are this moment with uncontrollable pain and now intermittent vomitting.  She says her leg hurts. What?!  No fever, thankfully....but zero appetite and no energy.  No other symptoms, but she cant keep food down and she can't sleep.  Do we sit here idle and wait for it to pass even though it is Day 5 and getting worse? It's just a virus.  (No it isn't....I can't believe I am blogging even fake saying that....STOP TELLING US IT IS JUST A VIRUS)  We haven't had an ER trip since May, things have been good.  So why now???  What is changing???  Its 4am and we need jackets, shoes, backpack, ipad, charger, maybe some food.  Do we need food?  We won't be there long will we?  (oh come on, Jeff, when have we ever gotten out of there under five hours??  Ok, true, now stop interupting and let me finish the story.  FINE.  Fine.)  Let's ask for a CBC test, just in case.  Why?  I don't know but maybe it will rule some things out.  Cancer?  No....YES.  OK.  I'll turn the car on, you buckle her.  Maybe its her appendix?  She keeps clutching in the same area over and over again.  But the leg pain????  No fever, remember that.  She just had her one year OT blood work two weeks ago....it was awesome.  I know.  If they tell me its her appendix I'll be relieved.  Definately demanding the CBC.  ok, lets just go.  We went.

The pit in my stomach that is never too far away after being so close for 3+ years reappeard (go figure) and nestled nicely in the middle of my gut in the sprint down the Portola Valley Hill.  And I realized I had to make a confession.

God....very sorry but....there's something I Want.

Such is my ongoing debate internally.  Fortunately, the big difference now is that we are going 6 months between ER visits instead of 6 days.  There are alot more truck torso rockin' days than freak out moments with the more favorable time in between.  Look, I don't doubt the bigger picture.  I get a little impatient but Faith has guided us this far and it will ease rough spots again.  But letting go of "want" and the corresponding feelings of anger and frustration that spin out from that struggle is not a battle I know how to attack very well.  I want her to have normal colds when/if she has to get sick.  I want her to not see any late chemo effects take over her movements or mannerisms.  I want her opportunities to be equal to those of her peers.  I want her to not think being stuck in the arm for blood draws is something everyone does this often (Wish you could see her....she stoically doesn't bat one eye lash when the needle goes in.  I think I cried about shots until I was 15).  I want her to always have this innocent belief that nothing truly is wrong once the band aid goes on.  I want.  I want.  That's not supposed to be the deal.  I should not want.  I should just be.

I have found my answer to a centering prayer recently in something tangible I can do without much effort.  Deacon Tom turned me on to this little Podcast put out by a Jesuit group in the UK called "Pray as you go".  It is a ~12 min daily podcast I can listen to on my commute to work.  I've been digging it.  Maybe everyone has known of this for quite sometime...but the discovery for Polly and I has been a good one.   I am OKAY with not getting answers all the time.  But the process of working through things for me usually involves asking questions derived from other questions and to be able to do that every morning with a guide, so to speak, has been helpful.  I am trying to simplify.

I finally sat down and watched the "Fault in our Stars" movie a week or so ago after reading the book cover to cover in about 4 days last May.  John Green is nothing shy of a genius in paiting an authentic picture of two cancer stricken teenagers who search for truth depsite an inevitable ending coming their way.  "Pain demands to be Felt" he has a character mention on more than one occasion.  True that.  And it could be the starting point of an evolving understanding of what my, or our, purpose is right now.  Things just never go according to plan.  They probably shouldn't.  Green's main character (Hazel Grace) then throws a reader like me a bone and says "The only thing worse than biting it from cancer is having a kid bit it from cancer".  Ok, stop it, you had me at "Hello".  haha  I actually throughly enjoyed the book because it asked questions about surrounding circumstances in a way that I would...or am doing.  How can I fully surrender to my Faith and be OK with whatever happens next?  What will I need to do?  It hasn't let me down yet, but does that always mean a positive outcome?  I gotta stop thinking so much.  You must think I am a wee bit crazy.  :)

Ellie's stint at the ER this past weekend yielded a crazy three day set of scans, blood draws, and more doctors pushing on her poor tummy than I can count.  I always forget there are readers of this blog who are not on facebook with us and don't know this all happened, so I will try to summarize here.  After two different doctors said exact opposite things about it possibly being appendicitus (which it wasn't), we were beyond fortunate to be seen by one of our old oncology docs way back from diagnosis who finally agreed that our parental suspicions were correct.  About a year and a half ago, she developed a condition called Gasteroparesis which is where the nerve in her stomach that allows food to flow out into her intestines gets irritated/temporarily damaged.  Everything in her food movement stops.  The condition came about as a combo result of the her monthly injections of Vincristine, a very constipating chemo drug, and her having a virus that threw her fragile immune system out of whack.  Ironically, the solution is very simple.  Eurythromiacin, a common antibiotic, is used not to fight any infection, but rather for its side effect of getting stomach motility going.  Polly and I know the signs now very well.  The problem is that most docs don't think that is a plausible answer until they run all of these tests and rule out everything else....test take time....time that passes while she is still miserably in pain.  We were sent home with no answers on two occaisons and all we wanted was the damn antibiotic.  How can I be calm when she suffers?  How can I not want?

Prayers were answered on Tuesday following Sunday in the ER and within 24 hours of her first eurythro dose, she was back to normal.  Phew.  Stomach pain, leg pain, loss of appetite....all appear on the relapse symptoms list, which I wasnt as worried about because there was no fever....but COME ON...my mind goes there.  Didn't help that we were put into pediatric ER room #6 upon our arrival.  The exact same room we were in on diagnosis day in 2011.  And I got to see my old Apple computer friend attached to the wall where I first looked up the phrase "Types of Leukemia in Children".  The irony ends there.  The frantic nature of leaving the house that morning was slowing and we were settled into just getting some answers because experience told us this was solvable.  Funny too because once the nurses know she had leukemia, we as parents are suddenly treated a bit more like nurse collegues, if that makes sense.  We start talking WBCs and Hemoglobin and ANC values.  It is nice ot have that on nights when the panic button is close to being pressed.  Worried yes, but beside ourselves, no.  That room no longer scares me.  We were being watched over now.  That sounds a little strange, but it has taken us 3+ years to get here and we are better people for it.  Perhaps because I want less now than I did prior to this whole childhood cancer world???  If that is in fact true, then we have progress even though I still complain a bit and want a few things (ok, alot of things).  It'll be like that for sometime....and I'd just like to keep asking more questions if that's ok?

"Apparently, the World is not a Wish granting factory"

~ Augustus Waiters ~
Osteosarcoma patient & John Green character extraordinare

You celebrate the little victories in this world, no matter when they are, so here is Ellie's first annual off treatment picture from three weeks ago.  1237 days into this fight and she has been cancer free for over 97% of them and we aim to keep it tha way.  WOW!  The Lord is my Shepherd...

Thanks Be to God for our Ellie Belle.