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Leukemia 101

March 14, 2012

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My site stats are up.

That means another family has a child with leukemia. And it pisses me off.  BUT… i am also glad tht I am there, or was there so that it might be easier for them.

To hear, ” She has blasts in her blood.”  ugh.. what does that mean…

“You’ll need to admit her immediately.”  ugh, do they mean now at this moment.

Then to hear

“She can go back to school if you’re comfortable with that.”

Does this make sense?  NO.  None of it makes sense because they’ve just told you that your child has cancer.  WHAT!!!!   Not possible.

So we need Leukemia 101 for all the parents of new lukes out there.  We need a mentoring program where we can pair newly diagnosed families up with old timers like me.

A person, not just a message board where they can connect and ask the questions that need to be asked.  Do I give the ara-c before or after breakfast?  Not that we  could answer every question….. but it is sure nice to have someone to ask.

Of course it isn’t just the site stats that have me up in arms about leukemia again, it is a daughter of a family member of a Facebook friend.

That does sound convoluted. But basically what it means to you is that another child has been diagnosed with cancer. Leukemia, the 2 year treatment, cancer.  The one with the 95% survival rate at 5 years after diagnosis.  The one where the parents freak out.  Oh, wait, that is all cancer isn’t it.

So, if you’re a current or former cancer parent POST IN THE COMMENTS the number one thing that you wish that someone had told you!!!  Post it now.  Stop reading and go post.

Surely you cancer parents weren’t this bad at following directions.  ; )

Welcome to Leukemia 101!

A few reminders

May 13, 2011

THIS POST IS STICKY, PLEASE SCROLL DOWN FOR THE NEWEST POST.

The past two and half years in visual story telling.

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Super Max

February 28, 2014

Check him out. 

http://maxloveproject.org/meet-supermax/

oh psssst… hey.. you..

May 13, 2013

Isa’s been off-treatment a two years.   yeah.. Two… 

I know.  Yeah.. it feels great… 

Remembering

April 4, 2013

Just a quick update.  

Isa’s check-ups have been good.  We’ll go back in a couple of months. But it is so hard to re-read or respond to comments. 

Can’t believe we made it through!  But we did.

New or Old?

December 10, 2012

Are you new or old?  I said to the 20 something dad in a leather blazer.

The man who moments before had been speaking in a confident manner turned his eyes downward with a waver entering his voice as he answered,

“New.”

The nurse called our name at that exact moment, so rather than go into a dialog about diagnoses all I could offer was, “We’re old.  All I can say is that it can get better.”

It feels different being ‘old’.

We were escorted to our room where we were lucky enough to have had a nurse that we saw frequently throughout treatment.  They remember Isa, mostly they remember us because Isa looks so much different.

She apologized for being late, because she had to take someone upstairs.  That is the code word for INPATIENT ONCOLOGY.  Isa calls it going upstairs.    Going upstairs is the start of the ride.

But for Isa, we’re pulling into the loading area, and getting ready to disembark. Her ANC was 5300, her platelets at 191K.  We’re at the end of the ride.  Her spleen is receding, her strength is returning,  her calves aren’t as tight, and she doesn’t fall when she walks.  Now we’re just working on arm strength so she can turn a proper cartwheel.

We’re doing OK.  We have a little fun.  We have a little stress.  We have a lot of love and honestly, for us it is still one day at a time.

Peas out.

Moving On

September 2, 2012

A lot of times, when I was in the midst of all the hell we were going through I wanted to read about life after cancer.  And I had a hard time finding it.

 

A lot of people quit writing.  I swore I wouldn’t be that off-treament family.  But then, here I am with months of nothing.

 

We’ve moved on with our lives.  Our wish trip came through and it was truly fabulous.  Our daughter was so happy.  And she got an opportunity to meet some other kids that were sick like her.

 

Yesterday as we were bopping over the hills in our SUV she said, “mama these hills make me feel like I did when I was sick.”  And it wasn’t a negative comment.  Simply sharing that the feeling she had in her tummy is how she felt then.

But I didn’t know.   I cried.   I had no idea that her tummy felt queasy when she was sick.  She never mentioned it. Not once.  She went through it alone.

Oh yes, we were all there for her, and with her every step that we could be.  But she was alone. She is the one who will have to, at some point, tell future doctors, friends and lovers that she had leukemia.  That she survived .  Not me.  Not her dad.    We can move on from some aspects of it.  She will forever be a survivor.

Our family survived the traumatic years of leukemia treatments, until February of this year.  Then we broke apart.   My husband and I have separated and are doing what we can to raise the children with as much peace as possible.

So, life after cancer can have so many unexpected outcomes.  Additionally, it is as if while she was on-treatment I stuffed a bunch of feelings.   And now that she’s made it over a year off treatment.  Some of those hidden feelings are popping out.  Nothing specific.. just feelings of fear that want to be released.

I was so afraid.   Every day.  Fear so great that I would lose her.  That I would do something wrong.  That  something I wouldn’t be able to handle would come up.   But at the time, I had to pay attention to what the moment was.. BUT now looking back I have a bit of a safe distance.  It’s behind me you see, because I am moving on.

Decluttering

March 18, 2012
Heparin Flush

In May it will have been a year since Isa went off treatment.  In June it will have been a year since she had her port removed.

I just yesterday got rid of the emergency port kits I had made.  We lived two hours away from her hospital.  So I always had the equipment to access her port either by me or at the local hospital.  Oddly the docs had no problem with us accessing her, drawing blood and dropping it off at the local lab.

Bye-bye heparin and saline flushes.  Bye-bye 3/4 inch 22 gauge needles.  Bye-bye surgical masks.

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