For 43,800 hours we have lived with the word cancer directly in our life. And let me tell you, sometimes it feels like I can remember all 2,628,000 minutes of this journey. But the amazing thing is, I remember it with a little sadness, but most of all with hope.
I will never look back on the day we found out Charli had cancer and think "yee-fricken-ha, look what we get to do now" but I will always look back on that day and think "we had no idea what we were in for", but this does not always mean it was tragedy.
Charli's cancerversary, a day I celebrate and lament.
Charli's cancerversary, a day which broke my heart...and put it back together again.
Charli's cancerversary, a day that I thought took so much away...but one that put so much new in its place.
For the past five years I have had something to say about this event. What could I possibly say today that hasn't already been said? "Charli had cancer, Charli survived, end of story"? This is not the truth.
I mean, don't get me wrong. Charli did have cancer. Charli did survive. That is NOT the end of the story.
Five years ago we were distraught. We were broken and battered. We were fragile, unsure of the world we lived in, and standing on others two feet as we could not put ours on the ground.
Four years ago we were hopeful, a little less fragile and putting pressure down on our legs.
Three years ago we were building our strength and starting to walk on our path.
Two years ago we were solid, and leading where others would maybe want to follow someday.
One year ago, we were a little wobbly again. Charli was having strange stomach pains which were causing her to be sick a lot and causing everyone who loved her a lot of stress. After some testing, scoping, and "doctoring" we moved forward...with some confidence, some medicine, and a little fear back in our stride.
Today as I sit and write this, we are filled with hope. We are strong, yet fragile. We are walking on our own feet, knowing that others are always here to hold us up even when we don't need it.
I guess there are a few things I could write about that I maybe haven't before. I could tell you story after story of amazing friends who have held me while I cried in fear and frustration for this journey, "why do we always have to worry about this", "why does this always have to be our my mind when something is wrong", "why do we have to worry so much about a stomachache". I can give exact examples of friends bringing me my favorite treat, just to make me smile and remember that while this is my life...the journey is not mine alone.
Charli's cancer didn't just change her.
It changed all of us who are reading these words.
Did it change you?
I am guessing it did...or you wouldn't still be here.
Neuroblastoma has brought a lot of heartache to my life. Can I tell you how it has changed me? Probably not, this is all I have known.
Neuroblastoma has brought a lot of clarity and stability into my life. I look at my life, today, and I know that I would not be doing what I am doing without that bump in the road. It makes me wonder what Charli's path will be, this experience was not about me, but look how much changed for me. I hope and pray we can guide Charli in a way in which she can reach her potential.
So as we "celebrate" and "lament" this five year cancerversary I am filled with a mix of emotions. I want to celebrate...and I want to lament. And you know what, I probably will! I know that I will have another crappy opportunity to lament this damn disease the next time Charli's medicine stops working and I start to wonder if that is really what is causing the consistent stomach problems. I know that when this time comes I will turn to the same people I always do who have to talk me off the ledge and help remind me that I need to find the balance between "typical mom" and "cancer mom", but though it was five years ago...it is NEVER gone. NEVER.
It will happen again. The fear, it is never gone.
I will call my friend who's husband is a doctor and see if she can ration with me between motherhood and medicine. I will walk to my coworkers office and she will remind me that it does suck, and it is okay to be so torn up about the way it leaves me feeling. Then I will go home and put the brave, yet slightly irritated, face on because I wouldn't want to cause fear in anyone else...yet I can't hide it because of all the irritated crabbiness I bring with it!! I will turn to my wonderful friend who has a son who is also a survivor, and she will calm me down - like I have done with her in the past. And many others will help in my processing of what may seem like regular everyday things, but aren't just quite as regular as I would like them to be.
This is what we do. This is how we survive!
It's not all heartache and tears though...we have had a lot of 'amazing' on the road. A lot. And one thing I know without any uncertainty...
I cannot wait to write about year six!