The Unexpected - Day 647

A little over a year ago, we crawled out of Ellie's final front line treatment sessions exhausted from the various side effects and tired of long days at the hospital.  We were anxious to get to this lighter chemo phase that would last the final year and a half of her protocol and in many instances craved a more normal health pattern where we knew what to expect.  Her immune system had been destroyed by the heavy chemotherapy and though it still was to be suppressed for the next 18 months, we would see it come up to a level where fighting off bugs was at least possible.  It think we have been fairly lucky for much of the time since.  Ellie's blood counts have remained relatively stable with a dip when dosages are increased (which occur when a patient reaches the next age/weight class as they grow) but good n' high enough that illnesses to come her way have not lingered.  Mentally, these last 12 months have been more or less better than we thought possible because we transitioned out of survival, day-to-day, mode and were allowed the luxury of thinking ahead.

We are still looking ahead with as much Hope as ever but got a definite jolt these past two weeks with the onset of what seems to be, after all the battery of tests finally done in the last 48 hours, an unknown composite of multiple viruses that came on strong just after she had started to kick two other cold bugs.  Timmy has been prone to respiratory infections since he was born and so we are on a higher alert during the winter months when it comes to basic colds with him.  In mid February he, along with a lot of help from "Nebby" (his nebulizer), overcame his latest cold and promptly passed on the germs to his sister (oh yes, twins share everything).  We figure at least we have a warning system in place as he is always the first one to catch something.  Ellie's version of the cold went to her chest, so the docs at the clinic ran virus check on her through a nose swab and she came back positive for the RSV virus in late February.  She did OK with this, had a slight fever, but never got to a point where we were alarmed.  She got better as we expected.  Wasn't it my last post where I had mentioned we were close to coming out of winter free of major issues???  I should know better by now.

Soon after the RSV had taken its course and given Ellie a good sized cough, her digestive issues began with an intestinal virus.  We started to see a strange change in her behavior.  She had very low energy and wasn't playing with Timmy in the same manner she usually does.  She lacked interest in activities and though the physical symptoms lessened in frequency, her normal, joyful, fun loving self had diminished.  I hate seeing her like this.  It is the worst part of any treatment or illness we experience....her suffering through the battle without much ability for us to comfort her.  Most colds we can start a clock during the initial onset and figure we have about a week or so before she starts feeling better.  No such luck this time and thus the worries began.

Since weekly chemo with methotrextate is every Thursday, it allows us an opportunity to see the doc if need be and have her examined.  During the third week of March, her digestive issues turned into periodic bouts of vomiting.  It is very difficult to tell on occasion whether an upset stomach is derived from a recent chemo treatment or a bug, so we play this guessing game and monitor other signs.  She is on a regimen of Zofran for nausea after every Thursday treatment which usually does the trick.  Only this time it didn't seem to help much as her stomach has remained queasy ever since.  Her unhappy moods kept her clinging to Polly most afternoons and when she did want to play a little, very small things would set her off to tears.  Polly started to prod me that something bigger was wrong.

If you know the story of her diagnosis, we had five main signs that had come up in the 2-3 weeks prior to June 26th that we had no idea what they were all pointing to until the doc made the big discovery with blood work that day.  1 - She had a big (very hard) belly from an enlarged liver/pancreas; 2 - She was extremely fatigued; 3 - She clung to Polly because she was in pain and her general unhappiness lingered over a long period of time; 4 - She had a low grade fever off and on for  a couple weeks; and 5 - She didn't want to eat much.  I'd admit that these symptoms are so burned into our minds now that you could say there is a little PTSD (post traumatic stress disorder) to it all.  These symptoms that may come up now in other non-cancer related scenarios can act as triggers for us in our thought process.  In the last two weeks, we've been experiencing all but the fever.  To be fair, her enlarged stomach is not a huge concern because we are sure to have her examined weekly (to a point where the doc kind of jokes with us about it - ya know....not funny "ha-ha" humor, but enough to let us know it isn't too much of a concern).  When the fatigue, lack of appetite  and clingy-ness reached Day 11 this past week and her vomiting was still persisting....I agreed with Polly something was going on.

We had called the docs a couple times and hoped for some answers but each time were told it was something that she would pass and that it wasn't a cause for concern.  This is one thing that drives me a little nuts about the docs on call - so easy to give a protocol type response (what he/she is seemingly required to say) when they are not the one watching her suffer through it all.  Ellie's weight had fallen 3 pounds in a little over a week when I took her in for her weekly chemo last Thursday.  She just wasn't eating.  I asked for a consult and we were given reassurance again that she was fighting a couple bugs and just needed time.  Couldn't we run some tests?  Thankfully her blood work looked steady but here we were getting more chemo and with it more unhappiness for her stomach.  As a side note, you must understand the chemotherapy she receives is literally saving her life, I never doubt that for a second (!!!), but our the cancer world is still using many drugs that are so toxic for human consumption.  They kill the intended cells but also many living healthy cells as well which could provide for long term health issues down the road.  It is a very uneasy feeling about messing with mother nature's original intentions.  We do what we have to do, of course, but therein lies the accompanying complexities of how chemo drugs mix with the body's normal abilities to defend itself.  As we are finding out, the potential variations and scenarios with how Ellie will react to every bug that comes her way are countless leaving us with an overwhelming number of things to learn around every turn.  I always get back to that question I ask of my players on a regular basis - "Have I done all that I can possibly do to help my team today?"  It is for us as parents to observe and note what we see and then advocate like hell to get answers.  I'll be damned if I miss anything that may lead her taking a turn for the worse one day.

After her Thursday chemo session, we returned home for Easter weekend with no change in her fatigue.  We had started to get very frustrated that not much was being done to figure this out.  On Easter Sunday while trying to enjoy some nice family time, her vomiting started increasing at a more alarming rate.  By 6pm we had had enough and decided to head to the ER at Stanford.  (If I were to tally all of days for our ER visits, I believe Sundays would win in a landslide, why is that always the case?)  We were there for five and a half hours trying to get some tests ordered, which they did.  ERs are wonderful in the service they provide overall but they do not know the oncology world very well sometimes.  I can smile about this now but it always takes the first hour or so for us to get the attending doc on the same page with us.  Once they know we can toss medical acronyms back and forth in conversation in a respectful but c'mon-we've-been-at-this-for-almost-two-years tone, we actually start to move forward in a productive manner.  This is where Polly is amazing.  She pushes the docs.  She has an amazing ability to put emotion by the wayside and get them to hear the difficulties that have led us to finally coming in.  And while this night did not provide all the answers we wanted, we finally got some movement to rule things out (which can bring a great deal of piece-of-mind at key times).

Through a few tests, we learned her liver function was elevated to ten times its normal value.  This figure is elevated about 2-3 times normally due to the methotrextae she receives so it was the one eye popping value of the night.  Her blood work was otherwise OK which beyond all the worry that came in the prior 7-10 days is a nice ace in the hole to have in your back pocket.....because it ultimately means she is not relapsing. It is a nice little thing to know you can bank on even though Ellie is right in front of us very unwell.  We currently have a couple of tests still pending as I write this but the take home message, which was confirmed by her oncologist yesterday, was that she is fighting off multiple viruses right now and it could possibly take a month to get rid of.  A month.  We had no idea.  Add that simple yet you'd think quite significant piece of information to the book never written on "What you should expect to see when your child is being treated for cancer".  As always this is trial by fire.  I know it is near impossible for the docs to tell us every possible scenario that might come our way, but the scope of the conversation we had yesterday could have easily been given several days ago.

Ellie received hydrating fluids on Monday morning in the clinic and will get more tomorrow as a follow up.  She has a Vincristine injection on tap for Thursday which is a constipating drug, so the assault on her gut doesn't really let up this week.  I would say today for the first time in a quite a while was a better day.  She was active and playful for more parts than over the weekend and had a little more of an appetite.  Now that we are aware this could be a couple more week battle, we're watching her diet with fine detail to hopefully get her stomach back to normal.  She's not too happy about some of the things we won't let her have (yogurt, milk....Frank's red hot sauce - ha) but complaints over food are a lot better to hear than general moaning and crying that goes on intermittently for hours.  Her liver values had come down a bit as of yesterday as well which is a good sign and I can say we are all a bit more relaxed as of today, which is a welcome relief.  She is sleeping soundly right now and we hope for a few more baby steps forward tomorrow so she can return to her beloved pre-school by next week.

I look at this whole two week experience as a potential positive in one respect actually.  This is another notch in the experience column for us; something that helps us deal with future ailments much better.  In 6 short months, we will be done with all chemotherapy and go, as they say, OT (off-treatment).  The chemo is a bit of a safety blanket right now which though is causes the suppressed immune system, the actual chances of relapse during active treatment are incredibly small.  This won't be the case following next October and I can already envision a tough winter moment of two when something like a similar bad cold/flu arises leaving  us guessing how much we really should be worrying about on the cancer front.  You want to be able to look to the future, make plans, and dream a bit like we did before leukemia entered the building.  Scares like this, even if just in our own somewhat uneducated medical minds as parents who are not doctors, have a very cruel way of yanking you back into a struggle that keeps you from being able to dream.  It's just part of the whole world we walk through now, like it or not.  I can accept that.  But as OT lies ahead, I want to know what things are possible as she starts to work her way back to normal body operations.  If she gets a bad cold, it may take a month to fix.  OK, got it.  Didn't know that before, but won't ever forget it now.  I know those first several months OT are going to be very tough as we hang on every blood test. If there is an edge to gain on knowing what to expect, like the incredible coaches I have worked with and know how to scout his opponent every which way possible, I want to have it and will rehearse every possible scenario so we're as prepared as possible.  Ellie deserves nothing less.

Thanks to many of you for the prayers over the last week.  I'll let you know if things don't continue to improve with her current ailments but we're finally moving in the right direction.  The Easter message of new life always comes at such an appropriate time for us each year.  If anything there is the reassurance of Faith which to walk without would lead to pointless and perhaps very painful meandering.  It may mean we bug, annoy, and nag the doctors we come in contact with so often, but we just want to hold onto that luxury earned from 21 months (!!!) of cancer remission,,,,to be able to look toward the future and see a huge potential for much brighter days ahead.