Tuesday, April 16, 2013

A Good Post ;-)

Well, the last couple of days I've been thinking about this great post I was going to write since last week was a little difficult.  Then, tragedy struck...in Boston.  Damn.  This one shook me up pretty good especially since the Big Sur is coming up in a couple of weeks.  A bombing at a marathon?  Really?  The thing that struck me most is because the end of a marathon is a cause for celebration, the completion of a grueling challenge, the sweet smell and sight of the finish line....especially at the Boston marathon.  People train their asses off to qualify and run this race...literally.  Now, the sanctity of this race is poisoned.  We've seen it happen again and again at elementary schools and high schools all over the nation.  For the last year, I haven't been able to follow these school shootings or process the aftermath of these devastating acts.  It was just too difficult.  This one, I took it in. There are no words for these senseless acts of pure terror.

I've found a couple of quotes that will stick with me in these tragic times:

"When I was a boy and would see scary things in the news, my mother would say to me, 'Look for the helpers.  You will always find people who are helping'."- Mister Rogers

"You must not loose faith in humanity.  Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty." -Gandi

Back to our lives....

Besides an up and down last week with emotions, this and that, we are all doing great!  I got my long run in (yay) and it felt amazing!  Gabriella and Bridget are loving school and loving being on the go.  G is getting some lovely locks and looks amazing.  Bridget is doing her best to keep up but get's pretty tired by the end of the day.  She dropped her naps back when we were staying home a lot just being mellow.  Now, she realizes she needs a nap and will often fall asleep in the car.  She could probably use some "routine naps"but I don't think she will comply.  Plus, we are having too much fun running around during the day.  If she sleeps for more than an hour, she'll be ready to party till 10pm....and that's parents time!

We got to see our Wish Granters, Jan and Gene a couple of days ago to get us all ready for Disney World.  We are all SO EXCITED!!!!!  I started packing up yesterday even though we leave on friday.  I just can't wait!!  It's going to be a fabulous trip and we are all really happy to spend time with each other.  They even have a parent's night where they watch the kids and mom and dad get to go to dinner!!  Whooo hoooo!

I've been hard at work on helping plan Mama's Night Out, which is already sold out to 420 local women.  With the organization and motivation of Cara and Michelle, along with the Jacob's Heart Crew, Susan, Deb and Judy, it is going to be an amazing event.  I can't say this enough that I am so honored and proud to be a part of this amazing community of women.  Team G Foundation is getting rolling as well and I'm really excited about this!  Its taking a lot of time and energy but I am motivated and determined to see it through.

I hope everyone has an amazing rest of the week and we will post more pics from Disney World!!


PS.  Thank you for all your encouragement when I was down last week.  I know these things will happen and I'm lucky to have people like you helping me through the rough times.  Even though it lasted only a few days (besides the GI and vertigo issues..blah) I wanted to share it with you all especially for those who have been through the experience or those who will experience it.  It's ok and you're not alone.  Much love to all of you!

Tuesday, April 9, 2013

Is this what PTSD feels like?

It's been a roller coaster of an emotion this last couple of days/weeks and I'm feeling the "post treatment" anxiety and stress that I've heard other cancer parents talk about.  Where every pain, or every soreness, or anything that isn't totally right means everything is totally wrong and the cancer has come back.  I'm finding myself wanting to be distant from friends who I'm not really sure have gotten the trauma that we've been through this past year.  I think I'm just having some anxiety from G being out of treatment and wondering if this monster is going to come back.  The fear... the fear of relapse is there....it's so real and it's present.  There's nothing I can do to make that fear go away and it makes me feel out of control.  I find myself needing much reassurance for being a good parent, being a good mom... so I go to those who have been there; my cancer parent friends and I ask them, "why am I feeling so terrible, about everything....when I should be feeling so great? And back and forth.  The wounds are still there, still very fresh and they have not healed.  The pictures and the feelings are still so fresh in my memory....leaving her in the MRI department after inducing with sedation, leaving her in the PET scanners...sedated, leaving her in the OR...sedated.  My little peanut...I had to leave her so many times.   I got a whiff of something that reminded me of the toxic smell Gabriella used to emit after her long chemo's.  God, I hate that smell.  I'll never forget that smell and it will bring me back to those times in the hospital having those poisons running through my little girl's IV lines.  (And now tears are pouring down my face).  I don't know how a parent lets this happen to their child and doesn't suffer the consequences.  I don't think there are any.  We are the ones that hold our children down, sign the papers for their bodies to be cut, burned and poisoned.  Our precious little babes we held in our arms and fell in love with the day we met....equivalent to the brightest part of our life to the darkest of moments having to walk away from our child while strangers "fixed" them.  And after all of that....there are NO guarantees.  None.

I met a friend the other day.  She said so casually, that I was doing the right thing.  We've been through a ton this past year and I was feeling like a guilty run down mom who couldn't do everything I needed to do for my children...but that it was ok.  That's all I needed.  All I needed to hear.

I know its temporary and the feelings will pass.  It's just part of the ride.

Thursday, April 4, 2013

Memories and Milestones

Last month Kris and I were driving home from the hospital after G's last chemo treatment.  I looked at Kris and said what we both were thinking.  "This may be the best day of our lives".  We both chuckled a little but understood that this was a battle won, but the war was and is yet to be determined.  The next incredible day was two weeks ago when we sat down with Dr. Marina and she told us the preliminary scans were clear, "nothing in her lungs and nothing new on the MRI."  Another brick was removed from our shoulders.  That night at home when the phone rang I gave a nervous glance around before I answered it.  Once again, Dr. Marina with good news, the PET scan showed no cancer activity.  We popped the cork on the Champagne and cried.  Another brick.

The following Tuesday we met with Dr. Marina for a more formal review of the scans that had now been looked at by the oncology team and given their report.  Same results, clear.  Another brick.  We were now clear to have G's port (central line) removed.  Monday morning Kris and I got up and were out the door a little after 6:00am (that's pretty early for us).  We wrapped G in a blanket and tossed her in the car.  As I carried her out of the house, the rain was falling on her head and she covered up with the blanket.  It was the same pink blanket that one of my co-workers, Gina, gave her just days after her diagnosis.  That blanket has been with her through quite a bit.  G slept in the back of the car as we drove to the hospital for one last milestone.  Once her port is out, she is considered a regular kid.  No longer will fever be immediately assumed as a central line infection and require immediate admission to the hospital with a bombardment of antibiotics for weeks.  All three of us were beside ourselves with happy anticipation.

At Packard the procedure was fast and uncomplicated.  The anesthesiologist was cool as was the surgery team.  We got to see a lot of nurses in the recovery unit that we got very close to while G was undergoing radiation.  It was pretty amazing.  The surgeon made me laugh when he came out and told us that we have to keep her mellow for about a week.  Low activity.  This kid has felt like crap for the last year.  She finally feels good and is the most energetic and happy kid I know.  There is no way we could keep her mellow for a week, even if we wanted to.
Last night I was checking on the girls before I went to bed and watched G sleeping in her bed.  It brought back memories of the countless times we had snuck in and given her her shot while she slept.  Damn I'm glad that's over.
The plan now is scans every three months for the rest of this year.  If it does come back, the earlier we catch it the better.  After the first year she moves to scans every four months for two more years.  Then it is scans every 6 months for I don't remember how long, but it will be awhile.
This month has been a series of beautiful milestones.  Great big victories.  We are overjoyed with the news but we realize that we have lots of nervous days ahead.  Parent's in the kid's cancer community called it Scan-xiety.
We have had a few questions about when will it truly be over, when can we really celebrate?  If there is one thing that this year has taught us, it is that we celebrate today, we celebrate every day.  Life is a gift, and right now it is a dream.  We have no idea what is next but I can tell you today, life is good.

Team G