Hope4Peyton

You know, it’s been a while since I did this, but there has been a sudden influx of new readers who may not know what the big deal is about all the follow up angst I suffer with each monthly oncology visit for Peyton.

So, here’s a quick “Cliff Notes to Peyton and Leukemia”.

Peyton’s first hospital stay at diagnosis, 2 1/2 years old

Peyton was diagnosed in July 2006 and her official diagnosis was Pre-B Acute Lymphoblastic Leukemia CNS positive. Leukemia is a blood cancer, which means instead of cancers that are solid tumors like breast cancer or brain tumors, it is already spread throughout the entire body upon discovery.

Just 30 days into treatment

It’s the most common form of the most common type of cancer that affect children under twenty-one.  It has the highest success rate of treatment as well.

She did two and half years of chemotherapy protocols and radiation to her brain.

The treatment is fast, nonstop and brutal on the body. We may not know the full extent of side effects for years to come…there may never be any obvious ones…but she’ll always run the risk of secondary cancers, brain tumors from the radiation, neurological issues and learning problems to name a few possibilities. We TRY not to worry about those things until there are things to worry about.

She made bald look good

We finished up her treatment in November 2008 and she has been successfully maintaining remission.

YAHOOO!!

We were told that the most common time frame for a relapse of her type of cancer is in the first eighteen months after the end of treatment…so suffice it to say I agonize over every clinic visit. {5 months down!}  This *could* be the one, those *could* have been symptoms, I *could* just be completely insane of my own doing.

And, blessedly, each month we’ve been able to walk away from the clinic knowing that her cancer is still in remission.

They don’t use the word “cured” until five years out from the end of treatment. FIVE freaking years!

I would love to be able to tell you that I am confident that we are done with this cancer in our lives beyond these monthly checkups.  I may never be.

We have seen far too many of Peyton’s young friends have Leukemia relapses…I’ve attended far too many funerals for kids that have the cancer with the highest rate of success.

Nothing is 100%.

So, when I walk her into the clinic for her fingerpoke, those results aren’t just a relief…they are our hope.  The longer she remains cancer free, the better her chances are of a lifetime with no disease.

And just for old time sake, her counts today?

Today: White Blood Count (part of the blood that fights infections): 8000

Normal: WBC is between  6000-17000

At the time of diagnosis: 45,000

Today: Hemoglobin (the part of your blood that carries oxygen to your body): 13.4

Normal: HGB is between 10-13.5

At the time of diagnosis, hers was 4

Today: Platelets (the part of your blood that makes you able to clot so you don’t bleed to death): 250K

Normal: platelet count is between 150K-450K

At time of diagnosis hers was 8K

Today: ANC (her ability to fight off infection): 3100

Normal:  ANC is between 2500-8500

At time of diagnosis hers was 450

I know that was totally confusing (and those are just the highlights), but IF you got it…her current counts are ROCKING!  Her body is really bouncing back from the effects of the chemo and is just constantly healing and fighting its way back to a healthy state. It’s AWESOME to see.

And for a few more weeks we breathe easy that all is right in Peyton’s body. She fought it and won.

Now we just pray it never comes back. E.V.E.R.



Peyton at the clinic from Anissa Mayhew on Vimeo.

ps…..I’m totally sounded like a medical professional there, yo!

pss…just don’t ask me any math questions, I might have to start throwing punches.

psss…I got my medical degree off Google, so don’t ask me for advice

*seriously, though, if you have any questions about Peyton’s diagnosis, treatment or overall crazy mother, feel free to ask*

A Berkeley student who was covering an anti-government protests in Egypt managed to get a single word out to his friends via Twitter: Arrested.

A pretty tremendous series of events unfolded over the next days and the college ended up getting him a lawyer and helped get this young man free.

That’s fairly impressive no?

Yesterday I found out that my Twitter account had been suspended for “suspicious activity”….apparently I somehow aquired a worm which was sending out spammy tweets under my name.  And the M.A.N. shut me DOWN.

I sent an email to Twitter saying that I wasn’t, in fact, a spammer and had caught some sort of Twitter virus.  They sent me an email saying “Have you been suspended? These might be the reasons why…please email us if you feel this is a mistake”….which, I did…AGAIN…and I got another email saying “Have you been suspended…blah blah blah”.

GRRRRRRR

Sooo, I did what any able-minded adult would do.

I hit Facebook to whine about it.

I too am being held hostage….maybe just from my social network addiction and not in a filthy, scary Egyptian prison, but still.

A spark of brilliance hit. *snort* Maybe if a couple of friends would tweet that I wasn’t a spammer and that I was trying to get my account reactivated, Twitter would pay attention sooner rather than later.

A COUPLE of friends.

Poor Twitter.  Over the past day a fair barrage of tweets have been sent to @Twitter to pitch a fit over my spammer reputation.  These people are actually defending my honor! I may be slightly crazy, more than a little weird and frequently misuse the words conscience/conscious…but dangit, I’m no spammer!

Can I just tell you how truly awesome these people are? These are just a few of the messages sent out to try to spur some justice around here!

Mamabug Hey, @Twitter? Bring back @anissamayhew! She’s a lover, not a spammer! #freeanissa

michellew_If we all show @twitter our boobs maybe they’ll bring @AnissaMayhew back! #freeanissa

mobu67 My day has been shot to hell. And do you know why? Becaus@AnissaMayhew can’t tweet. It’s ruining my chi, I tell you. #freeanissa

BackpackingDad Hey @Twitter, under no circumstances should you reinstate @anissamayhew. I’m pretty sure she eats puppies. #freeanissa

redneckmommy Um @twitter? Please reinstate @anissamayhew. Not only does she eat puppies but she has the best boobs ever. #freeanissa

Sammanthia I’m going to blip the sh*t out of this song until @twitter gives us back @AnissaMayhew. #twitteryouhavebeenwarned ? http://blip.fm/~4o09i

missbanshee Hey @twitter! Does @anissamayhew need a cake with a file in it??? Should we organize a candlelight vigil??? I WANT MY ANISSA!! #freeanissa

karensugarpants: Hey @twitter, @anissamayhew is not a spammer! #freeanissa #missin’ anissa #dudewhere’smyanissamojo?

childsplayx2: It’s a little too quiet around here. That’s what happens when @Anissamayhew is silenced. #FreeAnissa

mommielicious@twitter you needz to reinstate @anissamayhew stat! I may die w/o her!!

karlerikson If @anissamayhew is a spammer, then I’m RuPaul. #thesefishnetsgetsnaggedoneverything

gamingwithbaby Starting something here and need the R/T: Hey @twitter, @anissamayhew is not a spammer! #twitterfail

willrunforcake@twitter Where is @anissamayhew, what have you done with her?!? #freeanissa

danthedaddyHey @Twitter! Bring back @AnissaMayhew! You’re messing with my demographics. I think she was the only Asian following me! #freeanissa

Yeah, we Twitterers are a bit for the dramatic.  But what can I say? THESE are my people!

I’m not entirely sure this is going to have an effect on the speed at which Twitter responds, but I’m having a field day reading the things people are saying about me.

Would it be wrong to just go ahead and design a #FreeAnissa t-shirt now? Cause it’s kinda catchy.

And that thing about the puppies? It’s just a rumor.

No one can prove anything.

“Where you this interesting in high school?”

I got this message on Facebook the other day from a guy I went to high school with.  I can’t say we were friends or that we even knew each other all that well. For a few weekends we hung out in a mutual friend’s basement and drank…kool-aid…and…read the Bible.

Yup, that’s my story and I’m sticking to it.

I was sixteen, don’t judge me!

But he friended me in one of those friends-of-a-friend-of-a-friend Facebook chain reactions and after a few days of lurking around, THAT is the first thing he says to me.

“Where you this interesting in high school?”

I don’t know if my random, scattered, often confusing Facebook status updates offer a true glimpse into my soul…but they sure give you enough of an idea if you’d really want me to be your next door neighbor.

Does he mean interesting as in “Wow, you’re fascinating and I can barely leave my computer in anticipation of the next pearl of wisdom that will fall from your lips” or “When was the last time you had your prescriptions checked for proper dosages?”

Was I interesting in high school?  To a sixteen year old boy?  Probably NOT!  I still don’t think that I’d understand what makes teenage boys tick <—er..not that I’d want to, because I’m all thirty-five years old now and that would just make me all creepy and stuff.

I’m just saying.

So I played a bit of “If I could go back to high school knowing what I know now…..”.

Pffft, you know you do it too.

• I would totally NOT get into the Hypercolor clothing thing, realizing the hottest parts of my body are my armpits and my boobs….I may have figured out why I didn’t date a LOT in school.
• I would stop thinking of the movie “Breakdance the Movie” as the most kickass dance film ever…I wasn’t old enough to see “Flashdance” when it came out and I hadn’t yet figured out that guys who wore red, mesh crop tops may not be INTO chicks.  SHUT UP!
• I would NOT make that bet to wear shorts all winter long…in Wisconsin…for $150 measly bucks.
• I would have appreciated the fact that I had skin like a newborn baby’s butt and never touched it with makeup….including bright eye shadows…especially because all my friends were white and none of us could figure out how to put eye makeup on MY eyes.
• I would have totally broken the fingers of the girl who dared call my friend a name that starts with a W and rhymes with “door”…oh WAIT..I DID that one.
• I’d find better ways to cope with my anger issues.
• I wouldn’t have had that first cigarette during that field trip.
• I would have told him that I liked him instead of just being late to class so I could detour three halls away to walk by his locker.
• I would have filtered all my allowance into Apple stock instead of saving for a freaking Guess jeans.
• I would have saved the cassette tapes of Milli Vanilli instead of trashing them in disgust…I wonder if those originals are worth anything on Ebay yet?
• There are girls I would have told to suck it.
• There are friends I would have stayed in touch with.
• I would have been confident to be as strange and weird and random as I always have been, and MAYBE I would be able to say that I was interesting in high school…at least I would have been able to say that I was honest about who I was.

I’d like to think that like little kids who have to grow into their ears or noses, I have finally grown into my personality.

There was a moment, sitting in the uncomfortable pews of the historical church where we gathered to celebrate Maddie’s short life, that I thought to myself “I hope that if it’s ever Peyton, we’ll be able to say the same things Heather and Mike are saying”.

I protect myself from funerals in a very bizarre way.  Every funeral I’ve attended has had an element of it…I don’t think I’d want that many flowers…I thought that was a pretty casket…the verse they chose was perfect…I hated the theatrics….blah blah blah.

I think it’s a way, and I kid you not, to separate myself from the reality of what’s happening around me.  Criticize the grandmother’s dress, notice the dust on the window sills, make it about stupid trivial things, distract from the ripping pain of what is truly going on.

But something about the words being spoken during this service wouldn’t allow me to do it.

They didn’t speak of their grief and the heartbreak, although those are going to be day-by-day, hour-by-hour, second-by-second companions.

They talked about being blessed with time, no matter how limited.

They talked about the joy and laughter Maddie brought into their lives, and the lives around them, near and far.

They spoke proudly of her accomplishments, not the things she would never get a chance to do.

They shared her quirks, her charms and the shine of her personality.

They gave us peeks into their quiet times with her, the gentle moments where nothing *special* was happening, just love being strengthened.

Regrets weren’t a consideration, they knew with assurance that Maddie had lived the fullest life she could possibly have dreamed in the precious time she was given.

It was truly beautiful.

I’ve thought often…perhaps too often…about Peyton’s fragile life. The past years have ripped away any naivete about the mortality of children.  And I hope that if our circumstances change and we are standing in the shoes of Mike and Heather that we are able to honestly and with complete confidence know that we gave her the best life we could…that we let her just be herself and find the things that brought her happiness.

I want to know that we laughed with our kids, that we challenged them, that they understood the depths of our love for them….that we never took for granted the gift that they are and never held back a bit of ourselves from them.

I just want to know that we live so that we’ll have no regrets.

I want to live like Maddie.

**************

HUGE thanks to Casey, Meghan, Tanis and Shannon for allowing me to have a shoulder to cry on, a hand to hold and inappropriate giggles at a time I needed them most.  Love, always.

I’m home from my trip to California and I have a post inside me about that…however, I’m too tired and just..DRAINED to even think about writing it right now.

SO!

I want to share with all of you exactly HOW much my family loves me…and not even my kids, because I expected them to be asleep, but mah dear beloved husband….who texted me all day “when are you going to be home”, “I miss you”, “are you almost here?”

Sweet, huh?

I creep in the house and put my suitcase in the bedroom, strip off the day’s airport funk and some get into some good-to-be-home-comfort clothes.

Peter’s passed out on the couch and I so lovingly *snort* curl up with him. This is going to be sooooo good, I’ve needed this hug so much the past few days. I can’t wait for him to wake up and just be my rock.

“I’m home, babe.”

He snores.

A little shake is given.

“Honey, I’m back.”

I’m getting nothing.

“Hey! I’m here.” POKE.

MY big strong man?

Jerks up, screeching like a flipping girl, gives me wild-monster-in-the-closet eyes and almost punches me in the kisser.

It’s good to be home, ya’ll.