Angel LeAnn - Day 206

My heart is heavy tonight.  We've had a pretty full week and though we have found our bearings again, there are no shortage of thoughts swirling around in my head.  It is really easy sometimes to get into our weekly routine (even now with labs one day and chemo the next) and then have your mind start fooling yourself like everything is getting back to normal.  Ultimately there is a reality hook every so often, like it or not, to reel you back in.  Emotions can be so raw at times that there just isn't anything more to say.  I've spoken about it before, but the kinship we feel with other parents who are going through this is amazingly strong.  So many stories we have heard and read about are near identical to ours.  There are 200 new childhood cancer patients diagnosed in the United States every single week.  So, that makes us a part of the biggest parent militia in the world by my count. The support is genuine and as a result we feel a very deep connection with their joys and their struggles.

Ellie's fight with the side effects of the DI treatment has been up and down.  With all that I will share below, I want to make no mistake in this next statement - we are extremely fortunate to still be going through this at home without having to make any late night trips to the ER.  Please PLEASE pray for as germ free of a January and February as we can get within the confines of our family home.  Last week, the effects of the Vincristine and Doxorubicin took about 36 hours to set in.  The acute effects of the DEX steroid went into effect by Thursday.  Her blood counts had not started to drop quite yet, but the increased nausea and constipation were definitely there as well.  Steroids are just nasty things.  Why on earth would someone take these crazy pills to hit a baseball further???  Seriously.  The DEX turns her into a fire breathing child one minute, someone who is craving a five course meal the next, and then a fatigued soul on the brink of exhaustion still the next.  We find peace when she goes to sleep at night and thankfully puts in a solid 10 hours before waking at her customary 5am time slot to come crawl into bed with us.  I know when she has returned to her normal self again because as I wipe the sleep from my eyes and pick her out of the crib, she softly says "Hi Daddy" with a big grin.

During induction's DEX phase, the food of choice was Yo-Baby Yogurt.  Not so easy this time around.  The requests have been coming in fast and furious for Potato Gnocchi.  Go figure.  Not just any gnocchi mind you.  It must be marinara covered gnocchi from Trader Joe's which we buy frozen now by the pallet.  Somehow the marinara flavor every morning finds its way to my bowl of cheerios.  Oh yes, yummy.  We completed the first week of DEX on Monday morning of this week and are now in the midst of a week off Steroids until this coming Monday when we will start again for another 7 days.  The effects are still lingering as of today, but it hasn't been nearly as bad on the mood swing front which made today a lot more enjoyable for everyone.

Chemotherapy observations and side effect symptoms make you question EVERYTHING.  Polly and I are so acutely aware of signs from her diagnosis that we get very nervous anything even remotely close to a single symptom of that time "seems" like it may be showing up.  It is our world of constant worry, maybe even call it my own relapse paranoia.  I hate it.  I do not let it rule my world, but it is there.  If you remember, Ellie's stomach appeared very very big back in June in part because of an enlarged liver from the leukemia.  This past weekend, Polly pointed out that her belly had gotten bigger and when I felt it, it had become very firm.  And so my heart leaped into my throat.  She had just seen our nurse practitioner earlier that day and they had said she looked great, so how could this be????  I swarmed to find her latest blood data and saw that most of it looked normal except that her white blood cells has risen to their highest point since diagnosis and so again how could this be???  Inevitably, we go back to what we are always supposed to do  -  and that's call the doc.  So we called and were reminded of the constipation issues.  Soon thereafter, Ellie maxed out a diaper and her tummy was back to normal.  I think our own fatigue doesn't help the situation as we find ourselves scurrying around the house to make sure she is comfortable and Timmy doesn't end up trying to shove jelly beans into the cracks of the coffee table just after attempting to climb on top of it (again).  This past Tuesday was not a good day for several reasons, but in all of this chaos I managed to ground myself again thanks to some supportive texts from an incredible friend and the ability to share tears with my incredible wife once the house was finally at peace that night.

And here is the irony in all of this.  Amongst all of these awful side effects that have started overtaking her in the last 10 days, Ellie's body over the last two weeks has shown signs of regeneration.  The elevated white blood cell count (WBC) I spoke of earlier had been a number that was steadily climbing since the Interim Maintenance chemo has left her system.  Since chemo started on June 27th, she had not been above 2600 WBC.  Her numbers on Monday were 5700 just on the cusp of what a normal human being has (5K-10K).  Her hemoglobin was back in normal range and her platelets had maintained a +200K count since Christmas.  Her ANC hit a high of 5875 - are you kidding me?!!! But the absolute kicker is the visual sign that had been starting to show itself.  Her hair has started to grow back in.  Now of course we cannot get too excited about this because the DI drugs will wipe it away again in the next couple of weeks....BUT, to see her physically recovering (likely due to the fact that we had a nice 3 week break from Chemo over Christmas) gave me another ray of hope that my little girl behind all of these treatment phases is alive and well and just waiting to come out.  My "Hi Daddy" in the morning might as well be a purposeful "Don't Worry" for the moment.

Our oncologist has told us that the worry of relapse is not going to go away for a very long time, possibly ever.  I have to remember our day-to-day pledge and keep a good perspective (though I refuse to bury my head in the sand with what "might" be ahead).  The chemo treatments are more or less a safety blanket for the time being.  I think my blood pressure will get its true test the day she goes off treatment and must now trust her body to maintain on its own.  But we will cross that bridge on another day.  Not today.

After Tuesday's rough spots, I was on the field Wednesday preparing for another intense WCAL soccer game.  It is quite the whirlwind on game days to be teaching 4 classes and then head immediately out to the field for a much anticipated match.  The mental preparations along with fighting off fatigue is a challenge though one I welcome because soccer allows me to escape for a short while.  As my team was going through its normal warm ups, the opposing team's captains approached me by surprise and presented me with a card full of prayers and well wishes from their entire team.  Again, complete strangers reaching out and this time young 16 and 17 year old high school students.  It was simple yet very meaningful and it added some strength to my day.  To those kids, I am extremely grateful.  Little things can make all the difference sometimes.

Along with the friendship we find with so many other childhood cancer families, we also get attached to stories and progress.  Each one is connected to us through some point of our treatment journey when we first happened to cross paths either in person or online in our virtual support communities.  On Tuesday we learned of the passing of LeAnn, a beautiful 14 year old girl who had been fighting ALL for 15 months and was in the midst of preparing for a Bone Marrow Transplant before pneumonia set in while her body's immune system was down.  LeAnn's mom was one of the first people to welcome me to the LLS support forum where we started exchanging questions and answers on cytogenetics and how best to give that foul tasting DEX to our kids.  It felt like we had returned to our foxhole that night missing a member of the team and the sadness and anger that came along with it were overwhelming.  It's like getting the wind knocked out of you and those moments where you are trying to find air again.  This was my first experience losing a fellow warrior while being in the fight myself.  Dammit, this isn't fair.  My prayers for her family will continue to go on for quite sometime and my hope is that peace will come again.  I hope you will join me in those sentiments.  Angel LeAnn is now pain free and I thank her for showing me the true worth of a person.

I am thankful for every single day I get to pick my kids up from those cribs.  I'm signing off on this post at about midnight.  Just another 5 hours til I get my "Hi Daddy".  Can't wait.