It’s darkest before the dawn and I’ve always believed this to be true.  Historically my dark and my dawn have been of relative non-emergent qualities but I’ve adopted this mantra most recently to calm me and carry me, renewed, into the next phase of our new normal.

On February 15th we learned Will’s 2nd induction of chemo had failed.  With my heart in my throat, I held my son’s hand as he came to terms, once again, with the fact that life is not fair.  AML is, at best, very aggressive and hard to treat but the various genetics of Will’s cancer have moved him into the refractory and high risk category.  He has the cancer of an old man, not a 14-year old child (how could there even possibly be such a thing?) that is stubbornly wreaking havoc with his body and with our mental stability.  To watch poison the color of cleaning solution being administered into his body, to bear witness to the horrible side effects, to gaze upon my child who is so thin his hip bones are protruding and then to learn it was all for naught…is simply heartbreaking.

We did earn a trip home and soaked up every moment of normal we could.  I spent a good deal of our break researching and consulting with other top AML doctors across the country, something Will’s oncologist was also doing. Sometimes it is easier to stay numb and be blindly led by the hand through a journey such as this but I knew I needed to to start peeling off some layers.  It was time to get a little uncomfortable because we were running out of options and I would never forgive myself if I didn’t do everything in my power for Will.  Some of what I discovered gave me great hope and some of it pierced my soul and drained me completely of what little faith I was holding on to; knowledge being a double edged sword of sorts.

In my every day life I vacillate between being overly analytical and “trusting the universe” which, if I’m being honest, have not always served me well as I can get caught up in analysis paralysis or, depending on which way the wind is blowing, I might make a big decision rashly.  With so much on the line I was in analysis mode on steroids, like a mad scientist really.  In collaboration with his doctor I was considering two different clinical trials for Will; one at St. Jude and one at Cincinnati Children’s.  I had consulted with the two lead docs and done as much research as I could (one of the top docs at St. Jude asked if I was a doctor, lol…nope just a mom and yoga instructor!!!).  The very day I was about to book travel for Will and I to Cincinnati his oncologist informed us a similar trial had opened up right here at Colorado Children’s.  This is where the ‘trust in the universe” comes in handy….I feel very strongly there is a reason for all of this and for the timing of this particular trial.

So here we are, tucked back into to our spot at Children’s – the familiar sights and sounds both reassuring but also anxiety producing as we know what is to come.  Will has a new team of doctors who run the experimental department here but we also have the benefit of our incredible team of nurses who have mad skills at caring for kids like Will and families like us.

When Will was created he was doused with an extra dose of strength and courage – he just naturally has it.  He has allowed me the strength to remove my cloak of comfort and bare myself to this journey.  Cancer comes and tries to take everything from us but it also comes bearing gifts.  I can not control how this next phase will go but I can be assured that I have found new strength to engage us in the battle.  Our weapons are willpower, knowledge, faith and our incredibly brilliant allies who continue to research and fight alongside us.  Our armor is thanks to all of you, built to last by countless acts of love and generosity and so I thank you, we all do…continue to send us love and light and I hope you know we send it back to you tenfold.