Real Life Heroes

Our 4-year-old son has cancer.  Yesterday morning our refrigerator went out.  We got to Lowe's the moment they opened and purchased a new one, but they could not deliver until Monday afternoon.

Since he is undergoing chemotherepy, food safety is a priority.  His body does not have the immune system to fight off even the weakest bacteria.  We also have several hundred dollars worth of medications that must be kept refrigerated.

We told Lowe's we would pick up the refrigerator since they could load it.  But once we got home, how would we get it out of the truck?!  We were panicked at the thought of losing meds (on a Sunday when Medical Park Pharmacy is closed, no less).  We sent out a facebook SOS.

Here's what happened:

Post by Benjamin Morris Updates.

Just Breathe

Whelp, started the day with a nightmare of Ben's funeral (for some reason we were being forced to have a rehearsal dinner like at a wedding and I was trying to convince them not to leave Ben's coffin all alone at the church overnight). So fucked up.

 Went to the oncologist planning to be admitted, but failed counts (that always freaks me out because he is "off treatment" and that makes me feel like we're not DOING anything and the cancer cells have time to grow and replicate and it will get stronger). Not inaccurate, but not completely rational either.

 Came home and was excited to read the new MRD study from a global forum that the FDA held at the end of May. Regret what I learned. Ben's MRD level has a ~40% survival rate-even lower than we thought. 

Sitting here reflecting on this hellacious day when we remembered that Ethan's Parent-Teacher conference was at 4:30 today. We just completely forgot. Feeling like we are failing both of our children.

This is so freaking hard. Sometimes I think "yeah, we're going to make it. We're going to be stronger for it." And then I get a sucker punch like today and I wonder how we will make it through the next day, hours, minutes. How have we not just exploded with grief? Literally, physically exploded? What is keeping the sinew and flesh of my body from ripping apart from the force of my heart breaking.

 My soul hurts. It's a physical pain, that measures nothing compared to the pain cancer has inflicted on the tiny 36-pound body of my baby boy. Nothing to the pain Ethan feels in those moments he thinks I don't care about him or have time for him (I know he thinks that sometimes, because I thought it at his age when my little brother was dangerously ill).

Most days, with support, prayers, and a good sense of humor on my side, I feel mighty. Today is not one of them.

Today... I'm just trying to breathe.

CureSearch 2013

It Happened

Nothing special or weird happened that day.  No doctor's visits or lab results, just a plain old Friday.

And then it happened. Ben came in, looked us straight in the eyes and said, "I don't want to die." 

You could have knocked either one of us over with a feather. I couldn't even meet Mike's eyes for fear that I would shatter into a thousand pieces and scatter across the living room floor.

I asked our baby boy why he said that. He replied, "Because when you get really really old you die. And I feel like I am really really old." 

I spent the next few minutes telling him that he will live another 100 years before he is old. His body feels old because it’s tired from cancer, but the cancer will go away and his body will get strong again.  Gratefully, he agreed and bounced out of the room giggling and chattering about Scooby Doo.

I feel like a loss of... Innocence, perhaps? Like I was one person before that moment, and an entirely different person after that moment.  We knew that conversation was coming.  We were prepared, but you’re never ready.  Death is too real to our young family.  Death is something most kids think of in the abstract. Occasionally a pet dies, or even a relative, and you talk it over with your kids. Tell the little concrete thinkers about heaven and angels with halos.  No one should have to talk to their child about their own, very possible and very real, death.

Mike and I agree that today is the worst non-treatment day we’ve had.  Ben should have started Pre-K this morning. He should have chosen a cool backpack and new pencil case. He should have made his special first-day-of-school breakfast menu requests.  He should be headed to Wayside with his big brother. I should have picked out his clothes and packed his lunch. He should be with his friends from Kids First. But cancer took that away from him, from all of us.

Mike held back tears when he told me that as he watched Ethan skip into the school building, it felt so wrong. He should be walking his little brother to class and reassuring him of how fun it will be. 

It’s all just so wrong.

                                                     
Little ones just shouldn't get cancer.

They're not relationSHIPs; They're relationTITANICs

Look. I get it. I'm a crazy person.  I'm tired. Not like, "Whoa, that was a crazy week!" tired. I'm tired to my core.  I'm doing things to help refill my tank.  But instead of getting low, and refilling. I'm running on fumes, and getting a gallon of gas to tide me over until I'm running on fumes again.

Which means, of course, is that I'm a mediocre employee, a pretty crappy wife, and an abysmal friend.  I can't commit to anything, ever. Because Ben may start running a fever at any minute and I'm in the hospital fighting for his life with him for 8 days.  Because Ben gets emotional and clingy and I have to be present for those moments.  Because I am already dealing with judgement and guilt for maintaining my job (that I still LOVE so much).

Mom stayed with Ben in the hospital last week.  She met a father of an infant who was admitted for jaundice. The father all but called me a horrible person for not staying with Ben in the hospital.  He pretty explicitly stated that I was a bad mother.  He said I was greedy for keeping my job.  He said a lot of other things that I know you have thought as well.  I know you have, because I have.  Trust me, no one is harder on me than me.  I'm doing the best I can.

It's no secret Mike and I have gone to counseling in the past and are at present.  (We usually wear at as a badge of honor! Judge if you must, but we're ridiculously and absurdly in love with each other and don't care what anyone thinks, we're going to work for our marriage and this love.)  We believe in mental health like you believe in physical health.  The way you eat kale and hit the gym, we go to the therapist.  It's about health for us, and we recommend going for any reason.  That said, we are trying so hard to keep our marriage strong.  But it's weakened. Marriages are an entity unto themselves that require nourishment, work, and attention.  We have none of that to spare right now, so of course the marriage is going to feel the pain.  (No one panic. We're not in "trouble", it's just not ideal. Don't send that "The Morris's are getting divorced" text.  Unless of course you like the taste of crow.)

My friends must be so sick of me. I'm distracted. I'm not focused. I'm pretty self-absorbed.  I'm a flake and noncommittal.  It's been interesting to watch a few drop off or get angry.  But it's also been incredible seeing others come in strong.  The ones who just keep trying, keep texting, keep e-mailing, keep talking to me.  I believe there's a country song somewhere in there...

So what's it like when your kid has cancer?  Well, a predictable "it sucks" comes to mind.  I will never be the same. My relationships will never be the same.  But I bet they end up stronger, better, and will certainly be more appreciated.

Mother F*#%ing Cancer

As many of you already know, my 31-year-old sister was diagnosed with breast cancer two weeks ago.

Ben was in the hospital for some unknown infection when my mom and I got the call.  We stood behind his bed and sobbed.  Pulling ourselves together only when Ben took his headphones off and demanded to know what on earth was so sad.  I sat down on the bed and began explaining: "You know how you have cancer? Well, Aunt Tera has cancer too.  And we're sad because cancer can be scary sometimes."  He responded, "Aunt Tewa will get a port like me [pointing to his heart].  Then she is done. That is not sad or scary."  From the mouths of babes...

Tera is undergoing testing right now and will have a treatment plan nailed down in a couple of weeks.  You can follow her progress/story on her facebook page: https://www.facebook.com/TeraFightsLikeAGirl

One of her tests is a genetic test. Breast cancer "runs in the family" so we all suspect she will test positive for one of the genetic markers.  If she does, I have to go get a test done as well.  If it's positive, it is likely that a double mastectomy will be recommended, along with a oophorectomy (removal of ovaries)/hysterectomy.  (I'm hoping for the oophorectomy, just so I can say I've had that done. What a hilarious word.)

So.  Cancer.  You effing bastard.  First come after my son, then my sister, then threaten me.  You threaten us with death. You force us to maim our bodies. You steal precious memories that will now never happen. You take our future children.  You scar our souls.

Why does tragedy always seem to find my family?  How much can one family take?  We're about to find out.

I hate to ruin the ending for you... but everything turns out okay.

Benjamin Morris Updates

Hey Friends! I'm reclaiming my personal facebook page and will be posting all of Benny's updates here. I'm doing this for a few reasons:

1-Those who know me, know I like my privacy. After the Children's Leukemia Foundation posted Ben's pic last Monday (so cool), I got ~30 friend requests from strangers. I like for people to hear about Ben, pray for him, and to spread awareness about children's cancer. I don't like for strangers to know about everything (and everywhere and everyone).

2-I have a crazy neighbor.  Time to adjust the privacy settings back to strict.  Remind me to tell you this story next time I see you. :)

3-Some people (like friends of our parents and grandparents, colleagues and their friends and families, and entire congregations of churches we have never visited) have been following us and praying for us since February. They don't know me or Mike. This is a way for them to stay in the know. These people are our angels. 

4-I wanted a way that Mike, mom and dad, and Richard and Kathy could post updates when I am too tired/sick/out of commission to do so. We are about to enter a phase where Benny will be hospitalized for inpatient care every other week. It's treacherous. But we have all pulled together and worked out a schedule so that I can work for most of the times he inpatient. They can all post in one place now!

5-I've seen how successful the Team Emerson page has been. Team Emerson has been an incredibly hopeful and happy place to "visit" each day. I was so afraid a page dedicated to Ben's illness would be a terribly sad place.  But Team Emerson has shown me that positivity, joy, and even humor is possible.  The Poindexter/Meredith Family is a huge blessing to us. (If you haven't "liked" their page yet, please do so. Cancer is evil, but it brings us all together in a special way. Love abounds where evil exists.)

6-I wanted to provide an opportunity for my personal facebook friends to opt out of pediatric cancer. I talk about it a lot. And it's freaking sad. And the constant reminders bum people out or take a toll, and I get it. Really. I totally get it. Now we can be friends and participate in each other's world without being bombarded with seriously sad stuff. 

Thanks everyone for liking this page! 

https://www.facebook.com/BenMorrisUpdates 

8 Things I Have Discovered So Far

It's been an incredible journey so far and we're nowhere near done.  But here's 8 things I have discovered in the last three months.

8.  Why not us?  Instead of why me? Why us? Why him?  I have begun to turn that around.  The odds are not in our favor.  But it's not a 100% death sentence, so that means SOMEONE out there survives this.  Why not us?

7.  Just keep swimming, just keep swimming, just keep swimming swimming swimming.  Oh the things Pixar has taught me.  Sometime you just have to go through the motions.  When that time comes, it helps to hum a happy tune.

6.  The alternative is unacceptable.  Period.  So I hold his little arms when getting poked.  I make family, friends, and strangers alike sanitize. I make co-workers send me an e-mail instead of walking 20 feet to my desk if they're sniffly... just in case.  I keep a ziploc baggie with a doctor's note and facemask in it just in case I get pulled over, so the officer won't freak out by our masks (and the necessity for him/her to wear one).  I sign documents that state that I am aware that the "medicine" that they are about to shove into my child's blood is toxic, and might kill him. I do all of this stuff because I must.  Because the alternative is unacceptable.

5. I am a crazy person, and that's okay.  Those who love me, understand. Those who don't, well... point and laugh. I'm good with either of these scenarios.

4. I am surrounded by lovely people.  Maybe it's because I am in the Midwest/Bible Belt/relatively small town.  But the kindness of the people who surround me is downright weird.  I thought the world was going to hell in a handbasket!  It's all over facebook 24/7!  (Thanks a lot, Obama.) But that is simply is not my experience.

3. Don't sweat the small stuff.  Nothing like cancer to provide a healthy dose of perspective.  Oh, that waitress screwed up your sandwich?  Dude... it's a pickle.  Flat tire on you way to an important meeting?  Dude... send a photo text to your boss and then work on your tan while waiting on OnStar.  After cancer, everything is "small stuff."

2.  When in doubt, laugh.  And try to get those around you smiling as well.

1.  Don't eat hospital food... ever.  You WILL pay the piper.

So Your Kid Has Cancer

We learned on Monday that the daughter of some friends of ours was diagnosed with leukemia.  We're still waiting on bone marrow results to know if it's Pre-B, T-Cell, ALL or AML, and a host of other variables.

First of all, I am so angry.  We had counseling on Monday and I expressed:
"I am so livid. I'm beyond pissed.  And while I know it's not logical, the reason I'm mad is because the statistics for childhood cancer is 1 in 10,0000.  I don't know 10,000 people.  So in my head, no one I know is going to have to go through this.  I took this hit.  I carried this statistical burden for everyone I know.  No other Mommies will have to watch their babies whither."

Dr. Keith's response: "It's not right. It's not fair. But it still happens."

Other of our mutual friends have expressed a crises of faith.  If God is so, big, so strong and so mighty... why the hell do kids get cancer?!  (Sidebar: Don't tell people that Satan caused their child's cancer.  It makes you an idiot.)

Also this week, Ben was featured on the Childhood Leukemia Foundation's facebook page. It was pretty cool!  Lots of encouragement from strangers on a day I really needed to hear it was great.

But then I heard from Samantha.  Then I heard from 3-4 other moms who kids were diagnosed with ALL recently.  They all needed some help with the first weeks of diagnosis.  So I started to put together a list of all of the things a parent might need for the first few weeks after diagnosis.

***If you happened upon this page from a search result or on a link to other resource sites, I'm guessing your child was recently diagnosed.  I'm so sorry for what you are going through.  Comment or send me an e-mail if you need to talk or have questions.***

For hospital stays:

• Button down shirts to easily access the port.
• 3-ring binder with page protectors. They give you tons of printed paperwork for meds. They hand you a ton of resources.  Plus prescriptions. Plus instructions. Plus.... lots of paper.  
• Notepad to write down instructions and list of people to thank and questions to ask the doctor or nurses.  Or doodle.  
• Pillowcases.  Yes, hospitals provide these.  But one of Ben's side effects from the steroids was night sweats.  He went through 6 pillowcases a night sometimes.  It's just easier to have a stack to get you through the night.
• Activity bags. If you have friends who are teachers, ask them to put together one activity that will fit in a gallon ziploc bag.  Pinterest people, I'm talking to you!  
• A board game.  Because board games are awesome. But also because it gives people something to do when they come for a visit.  Childhood cancer is sad. But no one can be sad if they're playing a boardgame.  
• Quarters for machines
• House shoes
• Instant coffee.  Besides putting hole in your stomach, I think the last time the coffee machine was cleaned on our floor was in the 80s.  It was just gross.  If you have a Keurig, go that route. Otherwise, just add water coffee and tea is your friends.
• Koozies.  
• A canvas fabric bin or two.  It helps to have a "catch all" and keep your room from getting out of hand.  "stuff" tends to accumulate.
• Command strips.  So you can hang awesome stuff on the wall.
• Low calorie snacks.  Steroids make your kid stupid hungry.  And you tend to be lethargic/inactive in the hospital. No one needs to gain a ton of weight.  
• Yoga mat.  Hospital accommodations for parents are... lacking.  I did a lot of stretching and yoga and still ended up with back trouble.
• CD/MP3 player or plug in speakers for your phone.  For nighttime and impromptu dance parties.
• A calendar to transpose her protocol/roadmap/appointments on to.  They work in Day 1-29, not June 17-???.  It can be confusing.
• Your sense of humor.  If you don't laugh about it, you cry about it. Choose joy.

So be thinking of Emerson Meredith, and her parents Josh and Samantha.  They are beginning an incredible journey that will test them to their core.  But they will succeed, just as Ben and me and our family will.  Because we must.

May, Part One

Wow! What a month! May went excruciatingly slow and mind-blowingly fast all at the same time! Here are the highlights: •

• May 5: Superheroes visited the hospital while we were there getting treatment. 

It was super cool!

•  May 6: My dad finished assembling the new playground (complete with a cool new fence)!

• May 7: Successful day of chemo and still CNS1 (negative for leukemia in his central nervous system=no radiation=lower risk of long term side effects)

Certain long-term side effect: being spoiled with Oreos on command. Okay... he comes by that honestly.

• May 11: Blood Transfusion 

• May 12: MOTHER’S DAY! 

•  May 15: Bartlesville MOPS put together these awesome games for Ben for when he is in the hospital. It makes the trips so much better/easier/FUN!

Minimal Residual Disease

What. A. Week.

A simple half day appointment and spinal tap turned into a 3-day stay in St. Francis.  So here's the best way I've come up with to explain MRD and how it affects Ben.

The first phase of treatment is Induction.  If you were to give us a letter grade on how induction went, we would get a "D-".  Technically we "passed" and are in remission, but we have to take the remedial courses now.

When diagnosed, Ben met the criteria for Standard Risk.  There is also High Risk and Very High Risk.  Because of his MRD, he is now considered in the Very High Risk group.  What this means is that he has a much higher probability of relapse and lower chance for a cure.  The numbers vary, depending on what study you're reading.  Here's another way of looking at it:

Notice how you have to be less than .01% and we're at .4% meaning ours is particularly high (meaning our cure rate is that much lower).

So we're now receiving a daily oral dose of chemo, and he will be going to St. Francis to get chemo through his port a whopping FOUR times per WEEK!

Here's the thing.  They are going to kill his immune system.  Kids who die of leukemia usually die from infection or organ failure, not actual leukemia cells in the blood.  They can kill the cancer.  The trick is not killing Ben.

SO:

• Classified as Very High Risk
• Lots more Chemo at Lots higher doses
• More intense side effects
• Lots more risk for relapse (relapse = lowest survival rates)
• Higher chance a bone marrow/stem cell transplant will be needed
• Even greater chance of infection and organ damage
• More frequent clinic visits and hospital stays (we anticipate at some point being admitted for a month or two).
• We were removed from all clinical trials, because we are no longer eligible.  (I don't know why this one in particular is bothering me so much.)

In other words:

Damnit. This is shitty.

Generous

We had a pretty incredible experience last Thursday.  First of all, Mike works for Phillips 66 and I work for OakTree Software on the ConocoPhillips Windows 7 project.  I left my job of 7 years in July; Mike left his job of 5 years in September.  We're both new to this organization.  So when our colleagues, supervisors, and work acquaintances learned of Ben's diagnosis, we were gratefully surprised by the outpouring of support.  Most of them have known us for only a few short months!

Mike's dad has worked for the company for decades (sorry, Richard).  As he passed an old friend in the tunnels a few weeks ago with his freshly shaved head from the Bald for Ben night, I doubt he would have ever guessed the chain of events that would take place.

Rob learned about Ben, about us, and about what our family was going through.  He took action!

Rob auctioned off swipes of the clippers on his hair!  When he first started, we all suspected he might raise a couple hundred dollars.  Instead, he raised a couple THOUSAND!  Plus additional donations to St. Jude's in Ben's honor!

His generosity and the generosity of his team and co-workers has enabled us to purchase this for Ben, who in a few weeks as the intensification phase begins will no longer be allowed to go to the park for risk of infection.

Big Brother Ethan is pretty stoked about it, too!

The remaining donations will go towards his medical bills.

Strangers to us, did this for us.  We're unceasingly in awe of what people have done in support of our little boys.  

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.

Warrior Dash

JOIN TEAM BENJAMIN AND SIGN UP TO RUN THE 2013 WARRIOR DASH

STEP ONE: CLICK THE LINK ABOVE

STEP TWO: CLICK "JOIN THIS TEAM"

STEP THREE: FILL IN YOUR INFO.  CHOOSE THE "JOIN A TEAM" OPTION UNDER PARTICIPATION TYPE AND MAKE SURE IT SAYS "BENJAMIN".  SET ANY GOAL YOU LIKE, BUT REMEMBER $300 GETS YOU INTO THE VIP TENT! 

STEP FOUR: SEND US A LINK TO YOUR FUNDRAISING PAGE. WE WILL HELP PROMOTE IT!

THE TEAM WILL GET TOGETHER WITH BEN FOR PICTURES THE DAY OF THE RACE. WE WILL CONTACT YOU WITH A TIME AND PLACE!  

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.

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).

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.

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.

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.

Oh.
Dear.
Lord.

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!

Our First Stay at the Hospital

Doing some coloring...



Surgery to put the port in...



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



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...



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



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....




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



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




The Return of the Appetite



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



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!

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All I Got Was This Stupid Sticker

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...