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Leukemia 101

March 14, 2012

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!

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Cancer Moms.

February 21, 2012
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

February 7, 2012
tags:

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

January 16, 2012

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

November 11, 2011

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

October 29, 2011
tags:

Halloween Costume

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.

Too Many Views

October 20, 2011

Each day  I check my blog stats. Just in case I have a comment I need to moderate. Each day I am struck that I have had someone view the blog. That is too many views.  One view could mean that well-meaning friends are dropping by. But I can also see the search engine terms that got them to me.

Search Views
peg asparaginase 2
leukemia blogs 1
blogs about childhood leukemia 1
pediatric cancer month?? 1
interim maintenance i leukemia 1
leukemia 1
port for blood transfusions look like 1
leukemia blog 1
childhood leukemia blog

Does anyone notice anything.  People searching for information about leukemia. I hate that. This means that kids out there are still getting diagnosed with leukemia. That means that even though I am not watching them go through all their treatments. They are still getting leukemia. And I also hate that.

Thanks to WordPress for offering people like us the ability to share our stories for free. And to search engines that help those that need us find us.  Thanks for the words that come to help me convey, as best I can, what it means for a child to have leukemia.

Too many views on my blog means that too many parents are searching for information to help their children survive.

Thanks for reading.

 

For those of you who don’t read comments.  I received an incredibly special comment that I wanted to make sure that no one missed.

I have been following your blog for about a year now and the is exactly how and why I came across your blog. There is so much scary information out there that it was nice to find another parent’s perspective, it made it feel more human for me. Thank you for having the courage to write this all down for the world to see, you have no idea how much it means to a cancer mom like me. My brain has been so scrambled since my daughter was diagnosed that I couldn’t possibly articulate the journey in writing on a regular basis. This past month’s appointment(LP month) I sat in the waiting room feeling so sad because the room was filled with new faces, it still brings a lump to my throat, and unfortunately there are worse things than Leukemia. This month I met a teenage boy with an inoperable brain tumor, a 2 year old with leukemia, and a baby with a stomach tumor. There were a few more new faces but I didn’t have the courage to hear their stories, I felt drained and weepy.
Again, THANK YOU for writing this blog.

Today, these searches lead other to us:  I have no idea why anyone would search Dirty Family Camping.  But the rest show what people need to know, or maybe want to know.

isa leukemia 5
do children with leukemia have purple circles under eyes? 3
low anc in childhood leukemia 3
blog about children leukemia 2
dirty family camping 2
blogs from mothers whose children are on methotrexate for 1
peg asparginase 1
leukemia blog child 1
leukemia life 1
child’s hair falling out again in maintenance of leukemia 1
getting a lumbar puncture 1
delayed intensification leukemia
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