Saturday, August 24, 2013

Seriously?!?!

Timing.  It is all about the timing, according to Quinn's (awesome) hospice nurse.  Nurse Anne intimated a number of times that even in a child as young as Quinn, they seem to know, to let go at the right time - even if the fact that it is right isn't quite apparent to everyone else, at least not right away.

I held on to that talk with Anne for weeks following while Quinn was here, and for the past two weeks while Quinn is not.  

The Friday before her death was a 'summer Friday' for Brett, meaning it was his turn to have the whole day off (he alternates with his business partner / cousin during the summer).  We decided to go to the beach that day, it being a beautiful day and the beach being Quinn's most favorite place.  We had a great, relaxing day and on a whim, Brett's mom decided to come with us.

On Saturday, we went to a fairly impromptu barbecue at Brett's friend's house, where we had a great, relaxing day with old friends we hadn't seen in some time.

On Sunday, two of my brothers and my mom popped in for bagels in the morning - also somewhat impromptu.  Sunday afternoon, we went to my best friend's house where another close friend and her family were for yet another great, relaxing day.  

On Monday, my mom came over and she, I, the boys and Quinn went to Colin and Reid's favorite sprinkler park / playground combo where we had (all together now) a great, relaxing day.

Once she became ill, all of our immediate family - and my (almost) 92 year old grandmother - made it in time to see her and say goodbye.  When she passed, just our brothers, sisters, mothers, father, and step-father were in our house and came to see her once more before the funeral home took her away.

She managed to squeeze in amidst vacation plans, freshman year of college beginnings for not one but two of my nieces, and my cousin's wedding. 

All excellent timing - very commendable, Quinn.

But, Quinn had bigger fish to fry.  I should obviously have known.

Back in July, two days after Quinn's 14 month birthday, I finally made it to my 6week postpartum check up.  My gynecologist (formerly my obstetrician) wrote up a few scripts, including one for my baseline mammography.  As it was a few months early (I don't turn 35 until November - the magic age dictated by insurance companies as to when your baseline should be taken), he wrote it for a bilateral diagnostic mammogram.  

I made the appointment for August 16th.  It seemed like a good day because Brett would be home for summer Friday that day and he could take care of Quinn - the only other person besides me she would allow to handle her for more than 47 seconds.

Well, by August 16th, who was watching Quinn was obviously no longer an issue.  Being three days out from the funeral you may think that I'd bag the appointment and reschedule for a later date.  But, August 16th - besides being Quinn's 15 month birthday, and one week since her death - was one year to the date of her diagnosis (something I probably should have considered when making this appointment...) and it seemed prudent to keep the appointment instead.

As I entered the Diagnostic Imaging Center, it all suddenly clicked.  Quinn's timing was not about vacations, college entries or even goodbyes.  It was about Us - me and her, and the Linzer Party of Five.  I knew at that moment they were going to find something on that test, and with even more certainty, I knew Quinn knew it too.  That was her timing.

Unfortunately I - and she - was right.  The mammography revealed three spots that needed biopsy, only two of which could be reached by needle.  On Thursday, August 22nd I had the first two biopsied.  And on Friday, August 23rd, I learned that both were malignant, indicative of invasive cancer.

I learned, in short, that I have Breast Cancer.  

And I am apparently one of the last to know.  That little pip knew full well that if I had ever learned of this during her life, that information would have gone in my back pocket to be brought out only after our time with Quinn was through.  She would not - could not - allow herself to be cared for by anyone else.  I understood this, and it is (was :( ) my life's mission to ensure that she never would be - come hell or high water... or breast cancer diagnosis.

There are a number of 'next steps', the most important being a pre-op MRI to determine where else it may have spread.  The results of that test will really guide the rest of the treatment plan.

So for those of you who have asked that I continue writing... seems we have a new chapter to fill.

God, I miss my baby :(


Tuesday, August 13, 2013

goodbye

**a note: thank you to every one of the hundreds of family and friends who came to mourn with us, to Phil, Ken and everyone at Perry Funeral Home in Lynbrook, to everyone who contacted us with their thoughts, well wishes and condolences. 

It is very important to me that you all know that Quinn was never in any pain.  She is not 'free from pain' as I've seen oft-written, she is simply free from our world.  She passed away peacefully, at home, and in our arms.

I wanted to share my final words to the most important person in my life - both for those who braved the rain to stand with us and couldn't hear over its pounding on their umbrellas and those who loved her, and us, from afar.**

Quinn's Eulogy


One year, two months, three weeks and three days.  Not a lot of time, and definitely not enough time.  For you, though, it was sufficient time to make everyone who met you see you not as a baby - and definitely not as The Sick Baby - but as a person in your own rite.  From the moment you were born, despite being number three, you weren’t the baby - you were simply Quinn. Like Madonna, you needn’t any further introduction, and it stayed that way throughout your too short life - and will stay that way throughout your too long death.


I tried getting out of this, baby girl.  I read stories of stronger moms than me giving their children’s eulogy and I would say to anyone who would listen, “Wow, I can’t imagine how they did that - I couldn’t ever do that.”  Just so they all knew that when this inevitable time came I was going to balk and hopefully everyone would understand.


But you being a Person, I had to answer to you too.  And we both knew all the time, I suppose, that I could never get out of doing this no matter how hard it is.  Without taking away from either of our relationships with other people, we had something pretty damn special between us and without ever saying a word, you communicated volumes to me about everything - life, love and stinky butts.  


You enchanted - and continue to enchant - the world over.  People are mourning you, Quinn - not that poor sick Linzer baby.  It is you and your nasty looks, you and your crazy determination, you and your infectious smiles and laughs that we will all miss.  


We were all robbed of a lifetime of those - but our lifetime.  I truly believe you lived out yours.  You ate real food when you never should have.  Sat up on your own when you never should have.  Were an honest to god One Year Old when you never should have.  


Colin and Reid have had too much free time the past four days without you.  They haven’t been scurrying to pick up the puzzle pieces and toys you threw down when you were done with them - only to throw them down immediately upon receiving them again.  They haven’t been popping up in the back of your playhouse yelling “Peek-a-boo”, or dancing naked in dog towels after bath to get a giggle and shriek out of you.  They have been talking about you nonstop Quinny - and laughing at the memories, and crying at the loss.  You were very lucky to have to such amazing, selfless, crazy Big Brothers.  And they hit the jackpot when you became their sister.


We will miss the way you light up when any of us walked into the room.  The way you would bob up and down and throw back your arms when you heard daddy’s voice coming into the house.  The way you would giggle and smile and scream and yell - whatever was your propensity at the moment.  


I will miss holding you.  I did it for 1 year, 2 months, 3 weeks and 3 days almost nonstop.  I don’t know what to do with my arms now, baby girl - they are so empty without you.  I know we’ll make it through this simply because we have no other choice, I just don’t know how without you to show me.  You are responsible for everything I know and everything I am and it’s going to be so so hard to figure it out without you now.  


But that’s for us to worry about. You have no worries anymore.  Because I know that where you are you’re healthy - and running and jumping and playing in the ocean breeze.  You’re finally able to speak what’s been going on in that mind, behind those wise eyes.  And I know you were received with such joy up there, and are already running the joint.  


So don’t forget our instructions Quinny.  Find Grandpa Carney and whistle at him to get him to do stuff for you, like he used to do to Nana.  Find Grandpa Murry and ask him for some money, no senior discount.  Then take that money and go find Grandma Cyndi and have her take you shopping - she’s really good at it.  Have a cup of tea with aunt Pat, and a gin and tonic with aunt Mary.  And play with Lily, Trek, and all of those beautiful babies who went before you, who will show you the way and guide you through.  They’ll keep you for us until we can hold you again.


And send us a sign here and there - let us know you’re ok.  Daddy and I have already seen your lavender sky and your heart shaped cloud.  Thank you.

Thank you for picking us, baby girl.  I love you - always and forever.

---------------------------------------------------------------

My niece Katie created this super sweet video of photos of Quinn. I invite you to visit it and get to know her for who she was, not her disease.


Friday, August 9, 2013

Everytime a bell rings

An angel gets her wings.



Quinn Madeleine Linzer
May 16, 2012 - August 9, 2013


Wednesday, August 7, 2013

Here We Are

Thank you all for the heartfelt messages and comments.  Please know that we really do read every one and truly appreciate them all.  It sounds crazy but each time one pops up it does a little bit to lift our spirits.

Lifting they could do with.  The nurse left a little while ago, bearing the news we knew was coming but - like when Quinn entered hospice - knowing something and being told something are two very different things.

That something is that Quinn is at The End.  This has been a suspicion in my mind since last Thursday, when I called the nurse to come by for her second day that week - very unlike me.  But Quinn was very unlike herself, and I just could not shake the feeling that something had dramatically changed, even as I struggled to pinpoint what exactly it was.  

We had a very rough night here, the fever suddenly falling to the bottom of the concerns list.  Quinn is no longer tolerating any feeds (she's been off the pump since 2pm yesterday) and the hardest part of that is that she doesn't care.  Normally she needs something by mouth - anything.  She's past it at this point.  She also vented out tremendous amounts of black material, indicating that her body is shutting down (the nurse said it's actually blood), was generally uncomfortable and had at least two absence seizures this morning.

So, here we are.  I don't have much to say about it - probably because I know if I start, I won't stop and Ain't Nobody Got Time for That.  We can - and no doubt, will - fall apart later.  Right now we're just concentrated on keeping Quinn comfortable and the boys and ourselves sane and upright.

I'll leave you with a few photos of our amazing little girl.  She never fails to make us smile.


Tuesday, August 6, 2013

0 to 60

The past week or so, Quinn hasn't entirely been herself. We've used her narcotic an unprecedented three days in a row, she's been more open to affection, and generally a little more blah than normal. But nothing specific seemed to be ailing her. 

Overnight last night, however, it all came to a head with a spiked fever of 102.6 at 4am. Crazy as it sounds, her ashen color and want of me to sleep in her bed - whereas she would normally literally biff me in the face and kick at my belly to get me out - were actually more concerning to me than the fever itself.

This morning, 7 min after the Tylenol was technically no longer effective, Quinn had a 103.7. She is extremely lethargic and, when the narcotic is not in her system, is whimpering in her sleep. 

The nurse came by this afternoon and even the self-dubbed Eternal Optimist agreed that while it may be an infection, signs are indicative otherwise. That instead, Quinn may be in the final stages of disease progression. 

She was started on antibiotics at 11:30 this morning, so we'll have a much clearer picture over the next 24 hours. 

I'm not sure what to even hope for at this point. The end is imminent, even if it's not within a days or hours timeframe. And she's pretty zen right now, even feeling really shitty as she obviously does. So is it the worst timing?  Because the end result is not changing, timing is really the sole variable. 

I've given her 'permission', if you will. Six months ago today she was in PICU after bleeding out and I was begging her to hold on. But I'm not begging her right now. I'm telling her instead that if this is it, if this is the right time for her, then it's ok for her to let go. 

It'll never be OK. But for Quinn, we'll figure out a way to make it so. 

Please keep my baby girl in your thoughts.