A Personal Anthem

I am convinced that I would not be the person I am today if it weren't for music being a ever-present and powerful force in my life.   Music is an outlet, an outward expression, and even an input from others that is unique and cannot be replicated in any other form of communication.  It is honest, open, often raw, and yet still soothing and open to interpretation by the listener.  It allows an artist to express deep feeling, and the audience to take from it what is impactful and moving to them - each in their own way.  It's beautiful.

Many who are familiar with Harper's story and her journey likely know that music has been a powerful influence.  There is not a time that goes by that we are in the car that Harper (or one of her sisters) does not request music - and not just a radio station, but specific songs, played off of Melissa's iphone.  They have a playlist of songs that they like; that speaks to them.  They take turns requesting songs, and Melissa plays DJ in the front seat.

In the middle of Harper's first round with cancer, we caught her singing along to one such song...

I was driving, and took the video from the front seat.  Yes, I cried.  A lot.  As we watched her sing along to Brave, by Sara Bareilles, we could heart her inner strength come out.  She was bald, full of chemo, struggling for her life.  And yet, we knew she was fighting - it came out in her voice.

She won that first round with cancer.  And we celebrated, with a huge party, inviting her supporters to say a huge THANK YOU for the love and generous support they had provided through Harper's journey, and celebrating her victory.

Dean Heckel and Holly Nelson Jackson sang at Harper's party.  As a special request, we had asked for them to sing Brave.  They invited Harper up, and this is what happened.

 

This time it wasn't just me crying.  There wasn't a dry eye in the house.

 

About a month later, she got the chance to sing with Dean and Holly again, at Huber's Winery.

 

 



 

Brave, undoubtedly, became Harper's anthem.  It represented the incredible strength she showed, fighting and beating Stage 4 Wilms. 

 

After a short few months, Harper has relapsed.  And today, after just one round of chemo, she's lying in the hospital, unable to eat without throwing up and battling a fever.  At this point, we still don't know for sure what is causing all of her current issues.  And her beautiful hair, which was coming back super-soft, is falling out again by the handful. 

 

 

Now, more than ever, as Harper is battling to beat cancer once again, it is as important as ever for her to be brave.  The future is scary and uncertain. 

 

Harper - I want to see you be Brave

 

An anthem for Harper - and the rest of us.

 

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Don't forget to take a look at the new Hope For Harper shirt - order by Aug 23rd.  Proceeds to benefit Harper's care. (click on the shirts below)

 

 

 

 

Hoping For An Infection

We're hoping for an infection.

Yeah, I know. It's a bizarre statement, but accurate. We really are currently hoping for an infection.

Thursday of last week, Harper was not acting well. After a decent day Wednesday, she slept most of Thursday day, eating little and throwing up. We were less than a week post chemo, and with it being stronger stuff, we attributed how she felt to the chemo.

I laid in bed with her that night. Yes, we're back in the "bad" habit of someone snuggling with her all night. In a normal parenting situation, I'd agree it's not a good precedent. But in the case of cancer, I'm okay with it. We all can use all the snuggles we can get.

At 3am Friday I woke up and she was burning up. I got the thermometer and she registered 103.2 - not good. A quick phone call to the on-call oncologist, and Harper and I were headed to the hospital.

She's been there ever since, on fluids, throwing up, diarrhea, and fighting the fever. She's slept a lot and only nibbled without bringing it back up.

They've tested her urine - no urinary tract infection. They've done daily blood cultures - so far not a thing has grown. But the fever has not relented - only controlled by Tylenol.

We could chock it all up to the chemo, but 10 days after her last dose seems an excessive time to still be having nausea (the neutropenia I understand).

It makes us very nervous about what's to come. A week from tomorrow, she's scheduled to start another round. Will it go the same way? If this chemo works, how will her body react once they up the dose/duration for a transplant? It's scary to consider - and Melissa would be right there with her, the entire time, with no break.

So, our current hope is something they said today they would test for - C. diff. The symptoms fit - diarrhea, fever, loss of appetite, cramping, vomiting... And it can occur with chemo.

If it IS C. diff, then maybe we won't have to worry so much about the next round of chemo. I mean, yes, it will suck - but maybe it won't suck as much as this has, because maybe this is not just the chemo.

Strange as it sounds, it would actually be a RELIEF to learn that Harper has an infection. It would put our minds a bit more at ease in a situation where little ease is anywhere to be found.

So, here's hoping for an infection.

The Inevitable

What consumes me most, in the silent darkness, as I stare at the ceiling or the back of my eyelids at night is the question - "What happens if the chemo doesn't work?"

We've discussed our current plan with the doctors, and we know that at the end of these 2 rounds of chemo, IF the tumor has shrunken and/or shows signs that the chemo is working, we'll be progressing towards a stem cell transplant.

But what if we do this chemo and it doesn't work? What then? The reality is, we don't know.

There could be other chemo cocktails to try. There's surgery, and radiation. But what if... What if they all fail? What then?

This week we witnessed a family, with whom we've become close, face this very situation. A little girl that Harper has become friends with has hit the end of viable treatment options. The end of the road.

And her family has had to make the toughest call I can imagine. They have taken her off treatment and will be moving her into hospice care.

I have tried to show support in my eyes. I have tried to smile and laugh with them as they have tried to keep her spirits up. I have been amazed by their strength and love for their daughter.

But I am still not sure what to think. I don't know how to feel. Or, More accurately, I'm terrified to think or feel. I have a hole in my chest, a stinging, aching feeling, because that could be in our future.

As much as we prefer to hold on to hope (and we still do), the risk is out there. We knew relapse could happen - now it's here. The chance exists we'll run out of options. Will it come to that?

I shouldn't dwell on this, but I just can't help it. The stinging painful reality of what a close family is dealing with will not let my mind avoid considering this very real possibility.

It has to be the greatest and most difficult expression of love, in that situation, to take your child's welfare above your own desires. I would want to keep fighting, but to what end? To inflict more pain and suffering on my child just because I can't accept the reality? No, it is powerful love that let's a parent see clearly enough through the grief to know - it's time to stop. It's time to let go. It's time to make them comfortable and accept the inevitable.

I hope and pray we don't get to the inevitable.