Leukemia 101

THIS POST IS STICKY SCROLL DOWN TO SEE THE NEWEST POSTS!!!

 

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

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

The past two and half years in visual story telling.

This slideshow requires JavaScript.

Decluttering

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.

Cancer Moms.

In light of the shortage of Methotrexate….

CANCER MOMS

I belong to a special group of women

My friends and I have an amazing bond.

We never wanted to be in this group,

Yet we are in, for life.

Maybe we have met, maybe we haven’t,

Yet our love for each other is boundless.

We know the pain the other one feels,

And we share our victories small or huge.

Words like chemo, IV, Zofran , bald heads

Are always parts of our conversations,

As well as roidrage, tears, and meltdowns…

We always know where the closest puke bucket is ,

We can hold it in one hand and if necessary,

Swallow the sandwich the other hand was holding.

We can drive to the hospital ,

Park in the dark parking garage

Make our way thru the halls of the hospital

And to the appropriate floor,

Settle in a room, turn the TV on,

Give instructions to the head nurse,

Silence loud beeping IV pumps,

Direct a wagon AND an IV pole

To the playroom without hitting anything

Make our way back to the correct room

And all this, mind you,

With our eyes closed at any given time.

We know how to draw blood from lines

Sticking out of little kids chests.

We can hold them down with one hand ,

While a nasogastric tube is inserted in their little nose,

And be on the phone with their dads at the same time.

We can live for days on hospital food,

And on maybe only one meal a day .

We know the names of up to 20 different drugs ,

Their purpose, dosage and time to be taken.

We are always on call, 24 hours a day,

Seven days a week.

We are used to not always looking our best,

Hard to do with only a few hours of sleep .

Make up, hair styling, skirts are words of the past.

We have become addicted to texting, hospital, clinic, home, wherever…

We talk sometimes at all hours of the night,

We know we can count on someone to be up.

Then for one of us, the world stops.

She has to walk away, broken.

This job is over.

The job is over, but the fight is on.

Remember, I said we were in this forever.

We are friends, sisters, temporary nurses,

We are each others rock, each others punching bag,

We listen, we vent, we cry, we laugh together.

We share our lives and our deaths

We share our pain and our victories.

We are strong, but not by choice,

Sometimes we win, sometimes we lose,

But never are we defeated.

We are not nurses

We are not doctors,

We are cancer moms…

By Mimi Avery, mother of Julian, forever 4

Pink and Red

Isa wore a pink sweatshirt and red sweats today as she rode her bike with her sister. Her legs are strong. She still trips over her feet, but I can’t say whether that is due to Vincristine damage or an inherited klutziness. Sometimes I am amazed that she is still here. I appreciate her so much. I told her that I was twice blessed by her, once when she was born and once when she went off treatment.

I am grateful for every moment I have with her and her sister in this amazing life.

Go Dog Go

Last  Wednesday we went to the hospital.  The front office staff was all new. They had to ask our name!

 

THEY HAD TO ASK OUR NAME!!!!

 

Isa’s counts are low normal on most things, and still just about 10k short on platelets. Her spleen shrinks each time we go.   NO BIG NEWS!

 

Each time we go, I feel nervous.  A small sense of dread.  This time, however, I didn’t even take the Bag of Fun, so although I was nervous, I didn’t plan to stay all day.  After the hospital we went on a field trip to a museum!  WOW.. an outing!

I just realized that I didn’t even post about her diagnoseversary.  January 14, 2009.  I remember it very clearly.  GG even said that she remembers Isa getting her x-rays.  Isa says she remembers getting poked.

How far we’ve come, and I look forward to how far this intense child and I will go. And today, my little cancer survivor read Go Dog Go to me.  What a fantastic day today is!   And maybe, just maybe,  we’ll find the tree with the dog party.  The big dog party!

Onward and Upward

We spent Isa’s 6th birthday yesterday at the hospital. A regularly scheduled appointment.

Her counts are all within normal range, or almost to normal range, platelets only 122k whereas 150 is normal.

For the first time, GG felt a left out. Oddly, Isa got oodles of gifts and presents over the time of leukemia treatments. But, the gifts pushed GG over the edge yesterday. I look at it positively. For three years Isa’s elder sister gave the limelight, and lots of hugs, gifts and worry to her very sick sister. But, now, that Isa’s moving into recovery mode quite strongly, GG is moving into being able to show her emotions.

After some corned beef sandwiches, bagels and lox at the deli, we ate cookies and went home.

The routine is being broken. We won’t be going back for two months. The middle of January. I double checked to make sure it wasn’t going to be a problem if we couldn’t make it. Middle of winter could be snowing and dangerous to drive.

Our next appointment is January 11, 2012. Auspiciously, January 11, 2009 was the first day that her primary care doctor first told me it might be leukemia, with January 14 as her official first bone marrow aspiration.

The protocol calls for the Septra to end on the sixth month off treatment. So we are done with all medications.  Isa acts like any other kid who just went through years of chemotherapy and survived, like  a kid.

Vampire

You would think that after over 14 blood transfusions that I would be sick of seeing a pale faced child with dark circles.

Vampire: a wholly different type of pale.