Saturday, June 2, 2012

Preparing for the storm to come

Yesterday, we had a very busy and fun morning here in Memphis.  The team at ALSAC was shooting another commercial to bring awareness through their Partners In Hope Campaign.  They loved Kayla last time and thought she might have fun taking a part in their second add that should air in July some time. Just in time for us to hopefully be planning our trip home!  Yes, Jenny, I'm knocking on wood right now! ;)

This time was a much more fun experience because Kayla's counts were high and she wasn't so sick! Her energy is still pretty low and she gets very tired, but we were all so proud of how wonderful she did. Our part is a skype session, which you all know by reading this, just how important it has been in our experience here. SO many families are not able to be here together and rely solely on Skype to keep them connected. For us, we have enjoyed it to be able to see other family members and friends. Mostly, it has been a lifeline for me during the inpatient stays when Anthony is not allowed beyond the fishbowl of the BMT (bone marrow transplant) floor. I get very testy,  ok, TICKED off when I don't have enough skype hours logged in just watching Kayla. Being able to listen in and hear what's going on is the only reason I don't go completely insane during those 5 days.  Thank goodness this is the last round!!!

Ok, so I just went off a little bit... Our part was a skype session. Breathe Annie, breathe. In and out. Sheesh! I like skype. Ok, I hate it really... but love it for those 5 days. ;)  We loved that they took a model Target House room and set it up with all of these adorable props! They used 3 of the paper flower decorations from the Mother's Day celebration to hang above "Kayla's bed". They decorated the room as if she would be living in it. It was ADORABLE. Complete with a lava lamp that she oodled over immediately upon entering the room.  There are a few ways the scene might go, but we are guessing it will be Kayla Skyping dad telling him how much she loves and misses him.  Saying her prayers because she is tired and is about to fall asleep.  And then eventually falling asleep with the Skype still running. I walk in, tuck her in, kiss her on her head, tell her I love her, and then say "good night Daddy" and turn the computer off. It's really really sweet! Kayla did incredible and the crew, especially Rick (whom we love now) seemed very very happy with how it will come across. I think it helps knowing how important that computer is to us here. They even used my computer in the scene. As a special present, Kayla got to keep a prop... the beloved Lava Lamp! We will cherish it forever along with all of the people who keep the fundraising going. I am telling you, these people are so incredible. So genuine. So gifted. Truly dedicated to helping St. Jude stay funded and ultimately find our cure! They take their time with the kids and families making sure everyone is comfortable at all times. No one ever rushes you and they just find ways to climb into your heart.  We are blessed to be able to be a part of something so incredibly moving. It's a moment of our lives we will always cherish and never forget!


Today and tomorrow we have nothing on the schedule hospital related. As you can imagine, we are enjoying every second of it. Kayla still continues to get sick a few times a day, but it doesn't hinder her spirit.  I am finding myself so sad about leaving some of the families we have become close with over the past 6 months living here (and counting).  The friendships we have made here have been more like getting extended family.  We continue to find the blessings in all of this, and that is a huge one!  There is just so much to be grateful for. We are also so very grateful to all of you who continue to follow our journey and keep us in your thoughts and prayers. Not only have your encouraging words, emails, comments, cards, donations and even a few beautiful CD's,  etc. have helped to keep us feeling so strong & loved, but we know they have also helped to lead the hands and hearts of all of the doctors & nurses here taking such incredible care of our special girl! We are just so grateful. So so so very grateful.  

If you aren't on Facebook, I really want to share with you this very encouraging and powerful blog entry written from a dad who's child, too, has battled cancer. It's so well written. Denny and I have now read it several times and can't believe how well he describes how this feels. I especially feel so empowered by the end. I changed the font color for that reason. I love it.  Just so true. Good night everyone!

When you see news footage following a horrific natural disaster, storm, fire or other destructive event you'll usually hear one sound bite from a survivor. Amid all the loss, destruction and devastation there is usually one person left standing and despite the complete and utter loss of everything they have ever owned they will say something along the lines of:
"The only thing that matters it that everyone got out.  We are all alive and the 'stuff' can always be replaced".
My own personal storm, my own natural disaster, my personal hell on earth was the day the home my infant lived in was engulfed in flames by the word neuroblastoma.  
Since that day I have tried as hard as I can to climb through the fire, to see through the smoke and crawl through the debris in an attempt to find him and carry him out before he is killed. To be able to stand there with him after 'the crisis' as a survivor and to be able to only care that he is alive when the odds are just so stacked against him.
Childhood cancer is filled with kids who are warriors or angels and a lucky group of survivors. Will is still on treatment but ever since we have returned home from Grand Rapids where his PET scans showed that his tumor - while still measurable on CT - was barely active on the PET scan a switch has flipped in my brain.  
I am now parenting Will more like a survivor parent than a warrior.  I am still keenly aware of his disease and the risks to his life but I now worry more about a secondary cancer from his treatment.  I consider all of his radiation exposure and therapy and what that means for longer term issues. I now think of the future as consisting of more than the just next 21 day cycle of treatment - or the three month gap between scans.
Nothing has changed - other than that little switch in my mind - and for me that has changed everything.
When tearing into the burning building fueled on fear and adrenaline and worrying only about saving your child you fight through pain.  A gash to your leg, a burn to your arm or a broken bone as you inhale smoke in an all or nothing push to get your child outside to safety is not going to make you turn around. You can tend to your wounds later.  You must compartmentalize the pain and fear and the horror of all you see because you've committed everything to saving your child. 
As dawn breaks I have begun to sift through the ashes of the 7 year fire that has been neuroblastoma.

Will is not 'cured' - he'll never be free from the perpetual shadow of this disease and treatment.  It will take him from us one day.  However, I have removed my mind from the inferno way of life and I now I'm left to sort out what I'm supposed to do now.
As I go through the ruins I continue to uncover all of these bags of pain, suffering and grief that I was forced to bundle up as they happened.  And now they sit bulging with the malevolent promise of unrealized grief and unshed tears.  
I know I can not unleash it all at once.
I know I can not ignore them forever.  
I need to lighten the load I've been carrying and right now is the time to do it thanks to Will's quality of life - and my own. And as I sort through the PTSD bombs all around me I'll do my best to come up with a new way to live the life of a cancer parent and caregiver that is hopefully less suffocating.
I have begun the heavy lifting of personal cleanup by unleashing these bags of poison - at times deliberately - while other times it is unintentional.  What I have discovered is that this new new mind set is free of the extraordinary hyper vigilance that allowed all of this pain to be compartmentalized to begin with.  And without my brain being on high alert to protect itself from further emotional trauma this means that at times a simple thought or memory can detonate one of these PTSD bombs.

Regardless of how or why I choose to deal with all of this ignored emotional baggage I feel lighter afterward - better somehow - in a way  that I can't describe or even understand.  But nonetheless better and that makes it easier to lift the covers on what I've intentionally ignored in order to try and stay afloat.  
And with each day I realize just how much I have changed. 
I realize how different I am - and will forever be.  
And most importantly I realize that I don't want to live my life as a scared parent anymore.

There is no going back to who I was - so I need to figure out who I want to be.


  1. WOW! I bet you have read that a million times. Have you given more thoughts to my concerns and what you should be getting from St. Jude's while you are there, tools for later??

  2. That is truly an emotional and powerful blog post. Another saving grace of having a place like St. Jude's, I'd imagine, where you can meet and be with other parents who are going through what you're going through, as only you can understand it. I hope whichever Annie (Kayla, Denny, AJ....) comes back to all of us in Novato is empowered to feel stronger and more able to live in every moment and be at peace with what you've accomplished in your journey so far. Stay Strong and NEGU!
    Erin S.

  3. And with each day I realize just how much I have changed.
    I realize how different I am - and will forever be.
    And most importantly I realize that I don't want to live my life as a scared parent anymore.
    There is no going back to who I was - so I need to figure out who I want to be.
    and you will do it, Annie, are doing it, beautifully, with angst, deep thought, and grace. Thank you so much for sharing the words from this truly articulate dad. He speaks to our experience with our own Will, and to many who follow your blog. Love to all, Auntie Ann

  4. How can i watch the video?