Endurance - Day 199

There definitely is no longer a delay....intensification is here.  I think the endurance factor is going to be something to really embrace through these next couple of months.  Endurance requires reserves of strength and stamina when fatigue sets in.  I think also despite the plea to take things day by day, there must always be a small thought of the bigger picture to know an end to it all will come eventually (at least that's what I have to keep saying to myself).  We were spoiled a bit with the 3 week break from treatment at Christmas time and I think still need to get our day to day "sea" legs back under us for DI.

When Polly was pregnant with the twins, we went to this "holistic" birthing class to check it out. (Ok, I went kicking and screaming....but I went nonetheless in support of my wonderful wife and there we stayed for several Tuesday nights in a row)  There was a story told in pieces throughout the duration of the course meetings we had with other parents to be which comes to mind right now.  I don't recall every detail but it involved the main character hearing a voice calling her name for several days.  As she searched for the source of the voice, she finally came upon a window or portal in which she found out that she had no choice but to go through.  The voice changed its tone when she approached the window and said something to the affect of "No one passes through unscathed or unchanged".  (Yep, at the time I thought I was dead center at the  "funny farm" awaiting my straight jacket)  So, this main character starts to push her way through the portal and essentially take an inevitable leap of faith.  That leap is frightening, somewhat blind, and about the biggest unknown she had ever faced.  The point of the story, of course, was her journey to meet her newborn child.  The rest of the tale is fuzzy at best and though I didn't give the story much of a serious chance at the time, this idea of standing at the portal is what pops in my head a lot with this cancer journey.  How I would probably be standing there for days sometimes knowing full well I cannot go back but completely unsure of what to do next on many an occasion.  Pretty amazing how things said to us which we don't pay much attention to at the time come back to make perfect sense years later.  Finding a way to embrace a change that has left you anything BUT unscathed helps with the endurance factor as hard as it may be sometimes for me.  I want to be concentrating on potty training, pre-school, and saving for a house someday that has corner windows....but will endure the nights of mixing steroid solutions, organizing an endless supply of syringes, and making sure Polly has everything she needs while Ellie clings to her as long as it takes to get to the other side of this.

Monday's first day of DI chemo treatment went OK.  We've learned that showing up early for check in gives us a slight chance of getting on with things quicker in case another patient fails to show up for their appointment or doesn't make counts (which happens all the time).  Ellie went through her lumbar puncture about 10am to receive a spinal injection of Methotrexate.  I went with Polly to help distract Ellie a bit because she wasn't allowed to eat anything after midnight the night before and lets just say she isn't the most patient individual when hungry in the morning.  Surprisingly she did quite well.  We were able to get Nemo showing on the Pre-Op room TV and then there are the always fascinating videos to watch Timmy has made filming himself on the "mini-pay pay"  (my iphone) which usually involves 10 second spots of half his head tilting in several directions as he pushes any and all buttons while the camera rolls.  Throw in some background music from the radio in the car he was in while doing it, and Ellie gets a nice laugh out of it while playing it back.

After her recovery from the general anesthesia, she went into a private room in the Bass center to get a 1 minute push of Vincristine through her port and a 15 minute push of Doxorubicin (Doxo).  Doxo is the heavy hitter of DI....though let us not forget the annoyances caused by Vincristine.  She will go back to LPCH tomorrow to receive her PEG-Aspariginaise shots in her legs and thus the onslaught of chemo drugs toward any remnants of cancer in her marrow is on.  She will get a weekly port injection of Doxo and Vincristine each of the next two weeks as well.  The Doxo will lower her blood counts to neutropenic levels.  Our sense for isolation is already in full gear as we question even letting her set foot outside our front door sometimes.  Believe it or not, all of these could be much more tolerable if it weren't for the course of steroids that accompany two of the first three weeks of DI.  We give her oral doses of Dexamethasone (DEX) twice daily and while most oral drugs have little taste or can easily be masked by cherry syrup, the DEX is about the foulest tasting thing she's ever had.  We haven't had it since Induction in July and so are a little out of practice with it right now in terms of how best to give it to her.  We've mashed it into yogurt and chocolate sauce, but what seems to work best is just trying plain old water and giving it to her as fast as possible.

DEX produces bad mood swings and the Vincristine gives her joint pain in her legs.  She started showing signs of irritability by Tuesday morning and now for the better part of the last two days has just sat and cried.  It's heartbreaking.  My wife, who is nothing short of amazing in her own right, has sacrificed so much time from work to be here at home holding her non-stop like today when Polly is the only person Ellie will allow even near her.  We jokingly have called our son, "Tornado Timmy" on some days because of his jubilant desire to pull as many toys and books off of shelves as possible while playing throughout an afternoon.  But remarkably on days like today, he was at Polly's side trying to make sure Ellie was ok.  He is starting to pick up on the fact that something is wrong and my hope is we can continue to keep life as normal as possible for him.  For a two year old, he has incredible patience sometimes.  We have been able to sleep relatively normally, thankfully this week which is likely our saving grace.  Please help pray that continues.  For me, seeing Polly withstand these tough times fuels my resolve to work harder on what I can earn for the sake of the family.

We owe our friend Kathy a great deal of thanks for giving the twins a teacher led day at pre-school all by themselves last Sunday (day before DI started).  They had so much fun, we had to coax them out of the building when it was time to go.  And there was that small thought that needs to show itself from time to time of the bigger picture....of what's possible someday on the other side.

Endurance requires faith in purpose.  I have no idea if next week will be better or worse, but I do know we got through today and we have a good idea on how we're going to try to tackle tomorrow.  I'm saying a prayer of healing tonight for my co-worker who just lost her brother to a long battle with Lymphoma this week.  While I know not much detail about his particular situation, I do know she has gone out of her way to give hope to mine while sharing stories of similar struggles.  I am forever grateful for those conversations.  Faith is alive and well because of the support Polly and I receive from so many different sources.  And so, our purpose to endure and push forward goes on.