Monday, March 1, 2010

In like a Lamb......

It's March 1. I've put out a APB on February because it seemed to disappear from our lives without a notice. The last time I remember being truly cognizant of the date was January 22 - the day I sat in the clinic and listened to Dr. Hem and Haw tell me that Lois had leukemia. She was almost sure. Maybe. Kind of.

Lois returned home from the hospital a shadow of her former self. The last time we "talked" I told you she was weak and pale and lifeless. What I didn't tell you was what that did to me. Remember that anger I've been dealing with? When I took Lois to the clinic last Thursday to have another bone marrow aspiration and biopsy, I wanted to take a machete with me. I was SO MAD at what the doctors had done to my girl. Lois has always been a happy, spunky bucket of fun. The light was gone from her eyes. She was a ghost. And I wanted to take out the mofos who did this to her.

I don't think YaYa knows what a mofo is. Please don't tell her. Thank you.

Yes, I realize the doctors are CURING her. It's the cancer I should be angry at. But the cancer doesn't walk in the room and try to engage me in upbeat conversations about the weather.

Needless to say I left all sharp items back at the ranch and did NOT take my fury out on a single medical professional. But one particular nurse - a kind, meek, sweet person - made the mistake of asking me if Lois was doing well. And instead of venom pouring from my mouth, I dissolved into a pile of tears before her. Somehow that anger instantly morphed into a big pile of grief and heartbreak.

Who am I kidding? It wasn't a metamorphosis. The sadness is ever present. I think the anger is just a clever disguise.

Tears in front of a stranger? That's on my list of "not to-dos". I'm just not prone to emotional outbursts in front of people I don't know. I don't even enjoy doing it in front of people I do know. In fact, let's be frank. Tears are for sissies.

It still grates my last nerve I cried in front of Witchy-Poo. DARN IT!

Anyway. Lois's bone marrow test (BMA) went well. She went to sleep, they stuck two giant needles in her back, she woke up. Her blood results were amazing. For a child who hasn't made a platelet of her own for months, to have 166,000 was awe inducing. No transfusion needed. We picked up the fat man at the Goddard School and came home.


And the next day, something amazing happened. Lois started to perk up. Over the next 4 days, my daughter returned. And she came back better than ever. I think Lois was on a steady decline for several months before her diagnosis and we just didn't notice the slow progression. The Lois that is napping upstairs right now is 10 times perkier, happier, and spunkier than the Lois who lived here in January. Don't get too excited. Chemo can't kill the genetic material in her chromosomes, so she's still a lazy slug like her mother. Genetics is a bitch.

Friday we returned to the clinic to start round #2 of chemo but were stopped dead in our tracks when Lois's neutrophil count wasn't high enough. Essentially, her immune system still hasn't recovered enough to get hit again. So we're home for another week and we try again on Friday.


YaYa and Pops were here for the weekend to see Maggie perform in a school play. (Something tells me this is the first of MANY performances cousin Moo will participate in. She's naturally quite dramatic.) They took the Big Mac home to PA for the week so I can concentrate on mending my head, my heart, and enjoying my temporarily healthy kid. Being with her happy self is the best kind of medicine for what has been ailing me.


The results of the BMA? There are no more abnormal cells in her bone marrow. And those wonky chromosomal abnormalities (4 copies of #21) that were the tell tale sign that something was rotten in Denmark? Gone. She's in remission. But we must proceed as planned to be 100% sure that not one single yicky cell remains.

And that's where I start to get angry again. They took a giant baseball bat and knocked my kid to the ground. And over the course of the past 2 weeks she has picked herself back up and is standing tall once again. And Friday they will wield their bat once more and knock her to the ground again. What mother could participate in this madness and not want to scream herself to sleep every night? It goes against every maternal instinct I have. And I have to do it FIVE MORE TIMES.

Ugh.

But today? Today Lois is happy. And therefore, so am I.

FYI: Lois lost four pounds during her stay in the hospital for pneumonia. That was almost 20% of her body weight. I was told to give her whatever she wanted in order to try to get her to eat. She now subsists on a steady diet of pop tarts, oreos, and chocolate milk.

I am currently accepting donations of will power.


The photos from this post show Lois enjoying her daily mini oreo snack.

14 comments:

C, E, e & a said...

What an awesome sight to see Lois' big smile. And grat news on the marrow result....VERY good news. It can't offset the hell your going thru but thank goodness it's working. We think about you guys often. Stay strong, break down, do whatever you got to do to help the Butter Bean push on through.

Kim said...

Love the pictures! Lois and Mac are 2 gorgeous kids!!!! Good luck on Friday! We will be thinking of you guys and cheering Lois on!

Kim Godsey
HUMC Preschool

Heather said...

Finding your way.Trying to figure out how to have anger and fear dwell side by side with joy and gratitude.Tall order but I think your up to the challenge.

Great news all around really.Pesky neutrophils.We were set back a number of times waiting for those to show their faces.

Zoey too morphed into a different child during round one.She hit milestones,such as sitting,that seemed like they would never come.She had a sparkle in her eye that we hadn't seen in forever and this, despite the poison that had just been pumped.

Lois will continue to lead.You will follow.Sometimes with a puddle of tears trailing but often,I promise you,with a smile,as you rejoice in this tiny girls strength.

I just received an email this morning from a reader of Zoey's blog,another little chromosomally enhanced little love just diagnosed with AML.Her name is Keely.Just beautiful.So at the moment I have 4 of our "club' members waging war on this nasty,horrid opponent... the common thread,as I gaze at each of their photo's is a smile and a spirit that transcends all this crap...a face that assures us all that if they can do it,so can we.

My three year old,tomorrow as a matter of fact,is my hero.As are all these children who teach as they go and show us that we really didn't have this thing called life figured out after all.

Love from California.

Denise said...

I am so glad to see a post from you. I have been wondering how Lois has been doing. I can feel your anger all the way in CA and find it so hard to understand as well except for to know that they truly are making her better. She really does look happy in those pictures (of course who wouldn't with an Oreo in your mouth). Does this mean that she isn't losing her hair? I will pray for you to find your peace with this horrible disease as Lois continues to battle with all her might. You really are doing a great job!!

Stephanie said...

So glad to see you posting. i can only imagine the anger and emotions you are going through. I felt my stomach twisting as I read. You are super human from now on... if you ask me. All moms who go through this nightmare are.
Lois looks beautiful.
God Bless!And prayers coming from us!!

Anna said...

willpower with a side of poptarts and oreos on the way! Figuratively speaking. The babies are so beautiful!Take care of mommy.....

Megan said...

Oh, it's so good to hear from you, and to hear that Lois is her happy self this week! Great pictures, btw! So, I'm available again this weekend to come by MCV to provide a distraction or relief if you need a break... :) Love to everyone!

Angi said...

Good to hear the little fighter is back on top (even if it's temporary)...no will power coming from NH for you...I would cave and give the darling anything she wants...she's just too darn cute!!! You don't know and may never meet me, but I check in daily to see if there is an update, sending a prayer for you to stay strong...and not take large or sharp objects to the docs with you...LOL..just kidding:) You are a tough mom going thru everyone's worst nightmare...I have never been there but I feel your pain...sending a hug from a stranger...and a kiss for that beautiful little girl...stay strong!

Gretchen a/k/a StampingRooster said...

Willpower coming your way.

Jessica said...

I say let her eat what she wants for now, there will be time for willpower when she is all better and not having to go through chemo anymore. No need to stress yourself over the small stuff. :) I know it seems like you shouldn't be doing it - but Ms. Jessica says it's ok for right now. I don't know if that counts for much and I promise I can come help get her back on track if you need it once she gets better. I love you guys and I'm thinking of you everyday. I can come for a visit this weekend to keep you company - just let me know what a good time would be.

Stephanie said...

I've been an avid follower of Lois and the Fat Man for some time now, and I was wondering if you have a Facebook page?

Tina said...

So wonderful to see that smiling adorable face...certainly the best remedy for your aching heart. You are very brave, which mother won't want to lash out with anger, knowing what is happening to their little angel, and yes sometimes the anger is just a cover for all the pain we are actually feeling inside. It's also easier sometimes to break down in front of a total stranger than your own people. You need to let it out, as hard as it might be don't keep it stored up inside youself, that's going to rob you of your strength.

Love love those pictures, such a happy face, and yes, she does seem to enjoy her oreos!!

Kristen's mom said...

That too is the hardest thing for me...Kristen finally gets her strength back, her glow, her spunk and then back to the hospital for more crap. When Kristen was 3 she also had leukemia and Pneumonia on two occasions. She faught back like she does. So happy cute Lois is in remission.

kim lepe said...

so great to see her smiling :)

it was so great to meet you yesterday! i'm keeping you in thoughts and prayers... especially on friday. hang in there!