Wednesday, April 24, 2013

Extreme Makeover: Cancer Edition

Here is what one month of steroids does to little boys.  It still amazes me how much his little body has changed in such a short amount of time. I feel sad for him, frustrated that the treatment is so harsh.  There's got to be a better way to cure this.  There just has to be.

Friday, April 19, 2013

Warrior Dash







Thursday, April 18, 2013

Treatment Plan

Phase 1:  Induction
Basically they throw everything they’ve got at the cancer. At the end of this phase, he will be in remission (less than 5% leukemic blasts… remember we started at 70% on March 22)
 He takes:
  • ·         Dexamethasone – the bastard steroid that we all HATE.  HATE!  He gets it twice daily. It’s a little white pill.
  • ·         Vincristine – this one is the little baggie with the Jolly Roger on it that he gets IV-style through his port.  He gets it every Tuesday.
  • ·         Asparaginase – this one he gets pushed through a syringe into his port every Tuesday.  It’s yellow.  This is also the one with the  high chance for an allergic reaction.  “Allergic to Asparagus” is how I remember it…  Whatever works, right?
  • ·         Methotrexate straight into his spine.
  • ·         He also gets Pepcid for his tummy
  • ·         Mouthwash to prevent/treat mouth sores
  • ·         Zofran for Nausea (as needed)

Phase 2: Intensification
Leukemia cells hide.  They find little cracks and crevices in his little body and hide like the cowardly little bastards they are.  This phase hunts them down, drags them out, and kills them.  Think “The Searchers”.  The John Wayne version.
I’m not sure yet, but I THINK he will get:
  • ·         Vincristine – BTW, this stuff is derived from the vinca plant.
  • o   Side effects: Constipation and hair loss
  • ·         Endoxan/Cytoxan – Thi s stuff attaches itself to his DNA and turns him into a superhero, Spiderman style.  Ironically, this stuff is a carcinogen.
  • o   Side effects: Nasea and vomiting; diarrhea, hair loss, lethargy
  • ·         Cytarabine-Some sort of inhibitor.
  • o   Side effects: Low blood pressure, metallic food taste, mouth sores, and hair loss
  • o   Ironically, it also causes AML (the sister disease of ALL [what Ben has])
  • ·         Methotrexate straight into his spine.
  • ·         He also gets Pepcid for his tummy
  • ·         Mouthwash to prevent/treat mouth sores
  • ·         Zofran for Nausea (as needed)

I’ve decided this phase is aptly named.

Phase 3: Maintenance Therapy
Kill off any residual cells not dead yet.  They are few. But doing this prevents relapse.  We’ll do this for 3 years.
He’ll get:
  • ·         Oral mercaptopurine daily
  • ·         Oral methotrexate weekly
  • ·         Once a month we’ll go in for a 5-day course of IV vincristine and those evil steroids
  • ·         A whole bunch of other stuff I don’t know about yet.

So yeah, that’s the plan.  Lots and lots of details that aren’t figured out yet. 
But we are sure we will be fine.
And I’ll need the help of lots of red wine.

Thursday, April 11, 2013

Bald for Ben

What it's like for Ben to Get Chemo

Our chemo schedule is every Tuesday morning.  This past Tuesday morning, Great Great Great Granny came along and snapped some pictures.
Step One: Get a prize.

Step Two: get the tube put in.  (AKA Alien invasion)

Step Three:  Physical exam time.  Gotta listen to that tummy!

Step Four: Wait around for awhile.

Step Five: Nurse Diane comes to try to get blood and push meds.
Step Six: Time to take the Tube out!

Step Seven: Tube is OUT! See the smooth skin?  All that shows is a little needle prick (like a flu shot).

Saturday, April 6, 2013

Dark Cloud of Doom

That's me.

My kid has cancer.

This is sad.

But no one would describe me as a sad or melancholy person.  But people expect me to be sad.  But I don't want to be sad all the time.  It sucks.
I walk around feeling like a dark gray cloud over the world; people look at me and feel sad.  I don't like having that kind of impact on people.  That's not how I roll.  I make people happy, or try to.  I laugh at myself and make fun of celebrities and stupid things people do.

I know people are concerned and scared for me. I know people are nervous about saying or doing the wrong thing.

But I don't want you to be unhappy.

Thursday, April 4, 2013

Top Ten

Here are the things I think, but don't say:

1.  I don't want him to die.  And when I think about that 5-10% I burst into tears and hyperventilate.

2.  I'm terrified.  You know when you're watching a scary movie and the music picks up and you know something is about to jump out and your adrenaline starts pumping?  That's me, 24/7.

3.  I feel guilty.  Did I do something in this life or the last to cause this?  Maybe if I were healthier during pregnancy?  Maybe if I was a stay-at-home mom?  Maybe if I read to him more?  Maybe if I forced him to eat those damn carrots?

4.  I'm pissed.  I'm so angry.  I know what he is being robbed of, what he is going to have to physically endure, and I'm mad as hell.

5.  I'm scared of what cancer is going to cost us, financially.  And then feel guilty for worrying about money when his life is on the line.

6.  I pity Ethan.  I grew up with a chronically ill sibling. It sucks.

7.  I'm scared that our family and friends are going to get sick of dealing with us.  That in a few weeks, the texts and posts and cards and encouragement will stop.  I'm afraid everyone will "get used to it" and that when this happens, I will fall apart.  Because that's all that's keeping me together right now.

8.  I want my little boy back.  The steroids leave him asking for food all the time.  They cause roid rage.  Who is this child that throws plates and screams at me?  Why am I not more grateful that he is here? Who cares if he is a beast?

9.  I'm scared to be his sole caretaker. If he dies, it's my fault.  I'm scared to let anyone else do it.  No one loves him as much as I do.

10.  I'm sad.  I'm sad that our life as we knew it is over.  We have a new life now.  I'm sad for what cancer has done to us, for what it's still going to do to us.

Tuesday, April 2, 2013

The Bald and the Beautiful

Ben's going to lose his hair.  Not maybe, not might.  It's going to happen.  I figure he and Ethan will freak out if we just let it fall out .  So we will shave it.

On Sunday, April 7 at 6pm we will be having a Shaving Party at Regis in the Washington Park Mall.  Several family members and friends (and friends' kids) will join Ben for the most awesome group haircut party ever!  (FYI: A local news channel is interested in coming down to do a story... we'll see if it works out!)

If you want to join in, let me know via facebook or e-mail.  I'll need a head count by Friday!

In related news, I guess I've been doing too much googling of hair loss:

Yes, Bosley. Yes, we do.  

Our First Outpatient Chemo

I believe in aliens, and their probes.

First of all, in my insane 5am grogginess, I let Ben have a bowl of cereal on a DOE day (no food or drinks after midnight).  I cried in the shower, because I was certain I'd just let cancer kill my kid.  Logic, schmogic.

Second of all, we had to take his dressing off of his port wound.  Blaeuagh!!  Thank goodness Mike is a trooper; Mommy nearly passed out. Then we had to put the numbing lotion stuff on his port.  I reminded Mike to use gloves.  Next time... I won't. [Insert Maniacal Laugh]

So Ben FREAKED OUT at having anything sticky put on him (band-aids included) so we wrapped him up in Saran Wrap to keep the numbing lotion in place.  It was red. He was festive.

Drove to Tulsa in the rain, which set a menacing tone over the day.  About Tulsa city limits I thought "this is straight out of a goddamned Nicholas Sparks novel."  Anywho, we got in and Dr. K did a physical exam and we ran some labs and then... it was time.


It looked like the tail/probe thing from Transformers 2 when that chick WAY out of Shie Lebouf's league turned into a murdering robot... You remember the scene:
Waaaaaay out of his league; really should have seen that coming.

So they jabbed this thing in to his chest, and then hooked tubes up to it, then pumped him full  of poison.

Which brings me to another topic.  Why are we curing cancer with poison?  It seems so archaic.  I half expect them to bleed him with leeches next time we're in the office.

So anyway, we finished the chemicals, then went down to have a Spinal Tap

Not this kind of Spinal Tap, but you sleep through it all the same.

Then it was grocery store, then home to nap (me, not him).

We survived to fight another day!

My Little Druggie

I used to worry about my kids in their teens and "the college years"... I never imagined my 4-year-old would have more drugs in his system than Lindsay Lohan.  These are just the ones he takes orally.  They pump him full of many many more on Chemo Days!

Monday, April 1, 2013

Our First Stay at the Hospital

Photo: Good Morning!

Doing some coloring...

Photo: In pre-op. Surgery should take an hour.

Surgery to put the port in...

Photo: Our cookie monster! :)

Everyone looks like hell after surgeries... even toddlers.  On the other hand, all you can eat cookies!

Photo: It's a BOY!

Getting an EKG! The chemo can damage his heart so we will be doing a few of these to monitor his ticker.

Chemo causes heart damage, so we did an EKG to get a baseline. We'll do this every month for awhile. He slept through it...

Photo: Thanks for all the awesome treats!

We got some awesome gifts and cards from friends. Sugar overload!!!

Photo: Granny had to get a blood shot.

He HATED getting blood draws/lab work done ("blood shots"), so given the opportunity he gave Granny a blood shot.  She held him down for one of them, and paybacks are a bitch....

Photo: Blood transfusion underway.

His hemoglobin dropped dangerously low, so a blood transfusion was necessary. If you donate blood, thanks!  Ben is B-positive.

Photo: Brothers together, again.

Ethan was promptly kicked out of Ben's bed after this picture was taken!

Photo: Choosing down on some grilled cheese! He is a MUCH happier baby today. Lots more laughing and playing today. :)

The Return of the Appetite

Photo: We're done! No reaction! :)

We made it through another does of chemo with now major side effects or allergic reactions! Awesome sauce.

Photo: And the green beans are GONE!

He craved green beans. Weirdo.

On Sunday, March 31, EASTER SUNDAY, we got to go HOME!!

Warrior Dash: Ben's Team

Sponsor or sign up for Team Benjamin! We'll be there to cheer you on!

All I Got Was This Stupid Sticker

Photo: Praying for you guys during this scary time...

I actually want this sticker...

Cancer is a Terrorist

Cancer is the terrorists of disease. Seemingly random. Targets are unfairly chosen. Ravages and wounds or kills. Incites fear. 

But is has the same outcome to it's victims as terrorists: it brings people together in ways you can't imagine. Like the flags waving after 9/11. People come together. They support each other.

So even if cancer or terrorists "win", they lose. Because the end result is always

Our Story

  • In mid-February, our son came down with what we thought was allergies. He was feeling puny and had a stuffy nose and not eating that great, all typical spring allergy symptoms for him.
  • On March 3, we weighed Ben and realized he had lost 6 pounds in 10 days.
  • On March 5 we took him to his pediatrician, knowing something was very wrong. Dr. McQuillen did a urine test and a blood test. We awaited results.
  • On March 6, Dr. McQuillen called and said we were to meet with the oncologist first thing in the morning (March 7).
  • On March 7, we visited with Dr. Kirkpatrick, who ran more blood tests.  He mentioned that Ben did not seem to have leukemia.  He said it was probably some form of virus, but when someone with Dr. McQuillen's caliber asks you to see a patient, you do.  He said he'd probably be fine with some extra vitamins and rest.  We awaited more results.
  • On March 11, we got the viral results back: negative.  No atypical blast cells were found.
  • On March 13, Ben turned four. 
  • On March 21, we went in for a bone marrow aspiration and biopsy to rule cancer out and begin testing for autoimmune diseases.
  • On March 22, after six visits to his pediatrician and two visits to the oncologist, a bone marrow biopsy, and four blood tests, Ben was diagnosed with leukemia. 
  • On March 26, he started chemo.
This is our journey...