Friday, February 21, 2014


I struggle....often. I struggle with the fine delicate balance which is life. It's a teeter totter...up and down, down and up.  Every morning I find myself allocating time for each aspect of my life.  Every evening, I ask myself if I achieved that balance.  It can be anything from drinking enough water to maintaining a balanced diet to making sure all the bills got paid, etc.  Questions all day run through my head....  Am I working too long in the computer? Do my kids need me?  Is someone trying to reach me?  Is there important information that I'm missing?  Did I read enough with the kids today? Did we play enough?   Yes, it's exhausting.  Does every parent do this?  Or just obsessive ones?  Too many times, I've read passages and posts of cancer parents talking about their obsession...and guilt. "Too many precious hours researching, trying to save my child's life when I should have just put the computer down and spent time with him".  

It is so easy to see how precious life is when you question whether it will be always be there. That's an easy decision.  The fight has to be fought.  And you do. But life has this funny way of balancing it back.  Possibly the belief that it will, once again, always be there.  Maybe this is a coping mechanism?  Maybe this is a way to deal with returning to real life?   Cancer had my child....and we fought.  We fought like hell.  We won. Life doesn't go back to "normal"....whatever that might be.  It just changes.  And now, we fight like hell for every other parent who has a child with cancer now...and in the future.

These days often need adjustment from one to the next. It goes without saying that my family, being a wife and a mom is the first priority. Do I really need to write this?  That would always make the most sense. But sometimes these obsessions take over and makes me question my actions for my intentions.  Maybe it just comes from a place of guilt deep down.  I fought like hell for her life. Why don't I want to spend every minute with her...and Bridget?  Ok, I secretly do...but I don't.  That would just be weird. I want her to be independent...her and Bridget. And I want to...I need to see through my own passion. 

Adam and I are a pretty good balancing team. He pulls me back from getting too crazy into the plans for the foundation, I pull him back in, he starts to pull me back again....then I start pulling him in again. This morning, he tells me that I was funny going to bed last night.  I asked him what happened and he said "you were lying there with the phone on your nose. You were trying to 'think' before the ambien kicked in and I kept telling you to go to bed".  Now I know why my nose is phone fell on it.  Thoughts constantly run through my mind and keep me awake at night, unless I take my ambien. Yes, ambien.  I take it often. When I don't, I don't sleep.  I was trying to write down my ideas...for the to bring in more money....find that critical piece of we can start making a difference against pediatric cancer and set out what we aim to do...find a cure.  

It's funny to hear myself talk about a "cure". I never believed it was possible to cure cancer in my pre-cancer mom days. Now, it's all I hope for.  There are so many many ideas. It's scary. I don't want to loose myself in this foundation and forget why I'm here in the first place....because of my daughter....because of my family.  But I want to make a difference. It's a balance. 

I sometimes read that as soon as a child is diagnosed, it's like that's when life began.   You want to soak in every single second, every breath, every movement and never forget it. Why does it have to be like this once a child is diagnosed?  Because we easily take it for it will pretty much be there....why wouldn't it?  I go a million miles an hour.  But to stop and watch my girls sleep is just heaven. The other night, G must have known I needed her. She asked me to come lie with her.  I got to watch her little face, which brings me back to when she was a little baby. I got to soak in her hair...taking a deep breath and soaking it all in. I hope I never loose that. I hope I never have to think again about loosing that. 

My thoughts are scattered. I just needed to put them down and get them out. Today I attended a celebration of a little girl who lost her battle. She was killed by brain cancer. I don't go to these often. It's too painful. But I've been drawn in by this story.  I helped this mamma and this family say good bye to their little girl and thank them for the good they have done in terms of sharing their story with the world and their completely selfless donation of their daughter's tumor.  Ironically enough, it ended up in the hands of our board member who is at Stanford and heavily involved in the research aspect of medicine. How ironic. 

I held my little girls tonight, hoping that they would grow up knowing how much they are loved. Even when they drive me crazy or when I need a "mommy" break, I would do anything for them and give them every opportunity I can.  I'm always hoping my time Is balanced between them both and sometimes wish there were two of be with each of them. 

Every moment, life is a balance.  A precious balance.

Thursday, February 6, 2014

A YEAR post treatment

I did it.  I didn't want every other parent, mother, father on this planet...I did it.  I opened my heart and my eyes to a little girl dying of cancer and I've been reading her mom's blog...daily.  It's not that my eyes were closed (obviously) but to continually read stories and and blogs about little kids fighting (and dying) from cancer is emotionally draining.  I see why people won't read it.  I see why people turn their backs to it.  It's heartbreaking.  It's literally gut wrenching.  And most of us turn our backs and go on with our lives because it is just too sad to be a part of.

Well, I get it.  I've lived it.  But that doesn't mean we need to turn away and not act.  It doesn't mean that we can turn away and pretend like it doesn't it will never happen to us.  For every parent I know who has fought their child's cancer, they felt the same won't happen to me....the chances of it happening to me are rare...  I'm here to tell you.....WAKE UP!!  I was exactly this person. I didn't want to see it because it was TOO HARD.  Being a nurse and all, you are "aware"....sort of.   We know childhood cancer happens and you know children die of it.  But to actually get inside and feel and see the gut wrenching trauma that happens....yes it IS HARD....but it happens.   It happens all too often.  Damn it.    Reading this little girls story is so hard.  It has me emotionally to my knees and in tears for her family.  I hate it.  I hate every minute of feeling this way.  And she's not even my child.  I don't even know her yet it still rips me apart.  She is dying.  She will die in a matter of days.  And she's only 6 years old.

Throughout this horrifying journey, I have meet so many parents who have lost their child to childhood cancer.  I've read their blogs and I've talked with them face to face.  I've even cried with them.   I've gasped for air every time I hear "my child didn't make it" or "my child is an angel" and I think to myself how LUCKY are we.  How lucky we are to have our child still....thriving and living life to the fullest.  Going through it and coming out in the end with our little G.

I've met these parents and they still suffer.  Even with so many years that pass, they are never the same. They have a huge piece of their hearts that are void of a child they lost.  Time DOES NOT heal all wounds and no matter how much time goes by, it is still so painful.   I see it in their eyes.   I think of this every time I hold Gabriella's hand and as she falls to sleep.  This might have been us.  This might have been Gabriella's hand that I was holding as she was dying.  I could have been watching her take her last to many of these parents do.  It is agonizing.  Can you even imagine the pure horror that you would feel?

It makes me angry.  Yet, I push on and I WILL NOT STOP until more is done.

Tomorrow marks the last day one year ago when Gabriella had her last day of chemotherapy February 7th, 2013.  A day I will always remember.  The last day that poison that was necessary to save her life entered into my daughters little body. We will celebrate.
I'm in tears today.  Crying for happiness.  Crying for sadness.