Long overdue. And Long.

Another high dose chemo week bites the dust.

Maci was a champ, as usual.  We were pleasantly surprised when they told us that this time, the 5-day course of etoposide and cyclophosphamide was going to be outpatient.  They said that since Maci has done well with this chemo in the past (while inpatient)…. they are willing to give it a go outpatient.  It made for a VERY long week…. we were in the clinic between 6:30 and 7 every morning and left around 3ish…. but we were all very happy to sleep in our OWN beds.

We were SO VERY LUCKY to have our dear Auntie Chrissy here with us all week (and for some fun the week before!).  And let me tell you…. SHE was a trooper too!  These days are long and not a lot of fun…. and she made them so much more bearable.  For ALL of us.  We are so lucky to have her… and love her SO. MUCH.

Anyways…. as usual, we did have several interesting hurdles.  Most of said hurdles revolved around… uh…. um…. pee.  Yes.  Sorry to be so very blunt.  But… this chemo is particularly toxic to the bladder and kidneys… and therefore we needed to make sure Maci was adequately hydrated (kind of like a cushion for the renal system)… before beginning the chemo in the morning.  This meant they needed to test her urine every. morning.

Which…. trying to collect from a not-yet-potty trained 1-year-old GIRL….. was interesting to say the least.  Let’s just say that after MANY failed strategies…. we FINALLY found one that involved a plastic and gauze lined diaper.  Poor baby.  But let’s just say that this option was not the worst/most uncomfortable….. by far.

In addition to THAT… we were also finding that she wasn’t always hydrated enough first thing in the morning.  This wasn’t the end of the world, but did mean we had to wait for her IV fluids to start working their magic…. and thus would push our end time further into the afternoon/evening.  Longer days were NOT something we were excited about.

So, we were given a portable IV pump to use at home…. and we learned how to hook Maci up to fluids overnight… administered through her port.  Doesn’t sound so bad, right?  I mean she’s on fluids overnight whenEVER we’re in the hospital.  It’s never an issue.

Ugh. Let me just say I give those nurses credit.  I would much rather just sit by, completely trusting them to protect my baby from all of the things that could go wrong while pumping fluid through a long tube, into a vein in my child’s chest, that then leads to her heart, brain, body, etc.  It was relatively simple…. but completely stressed us all out.  I couldn’t stop thinking of all of the {ridiculous} things that could POSSIBLY go wrong.

I even turned her infant motion detector monitor back on.  (ya, know?  the one that is supposed to protect against SIDS?) Yes. I am crazy.

Needless to say, there was NOT much sleep had. by anyone.

Days in the clinic were long – but Maci was such a good girl.  She had her moments of complete meltdown, yes.  But overall…. I can’t even begin explain how amazing she was.

She played with her favorite toys – in the same order everyday.  Mr. Potato head.  Animals. Fishies. Blocks. Cars. – girlfriend loves her routines.  She colored and painted.  She “momma’d” her baby.  She snacked and ate like a big girl – all by herself in the big girl chair.  She ran around clinic like a little maniac, saying “hi” and “buh bye” to EVERYONE. So social. So happy.  So freakin FAST.  The last time she was hooked up to an IV for these long stretches…. she was NOT NEARLY as fast.  It was interesting.

She watched a lot of Wee-Sing.

By day 2 Momma had given up on limiting TV to her normal 20 or 30 minutes a day before nap time.  Chica has cancer. And is being pumped full of chemo that would make a grown adult barf and crawl into a ball. And is stuck in a tiny dayroom everyday. All day.  She can watch as much damn TV as she wants.  Plus, it was kind of funny trying to explain Wee-Sing in Silliville to all of the nurses….. look it up.  You’ll understand.

Some pictures from our week…..

Big girl lunch.

She’s arty.

Tattoo time.

Momma finally got some snuggle time.

Could she possibly look MORE like John?

Just wants out.

Blowing raspberries. Of course.

Watching cars.

Maci’s BFF for the week.

Our fun new activity… thanks to one of our favorite child life friends!

So.  We finished up on Friday…. and were pretty happy with how things went.  And, of course, that it was OVER.  Now we just wait for counts to drop…. and pray that she stays healthy and fever free.  They say the worst of it is generally 7-10 days post chemo…. which would be from about Monday the 28 – Monday June 3.  Prayers during this time would be so very appreciated.  It’s during this time of low counts and nuetropenia that Maci is at her highest risk of serious and life threatening complications.

As of now, Maci is her happy-go-lucky self.  She is getting back on track with her sleep schedule, so she is much happier and playful.  We are now on house arrest… but they tell me I can still take her outside for walks and to play a little bit.  Just have to keep her clean and as germ free as possible.  Ugh.  Stress.

We had a nice quiet weekend, and enjoyed some family time.  John has been transferred for work, and will now be working VERY long days…. including Saturdays.  We are not thrilled about it…. but we will make it work.  We tried to enjoy every second of our time together….

He planned the perfect weekend for my 30th birthday…. Surprised me (I thought he had to work on Saturday) in the morning ….cooked my favorite breakfast…. we had a great family day at the zoo….. and Auntie Chrissy made an AMAZING cake.  This whole chef-for-sister thing really works out.  Maci especially loved the frosting…. let’s just say we finally had to remove the cake from sight.

John took me out that night for an ADULT night out.  Just the 2 of us.  A nice restaurant. At night. Good (adult/non-hospital) food. Happy (non-cancer related) conversation.  We took our time and didn’t rush out.  It was like old times.  It was wonderful.

Overall, life is chugging along for us….. We are praying Maci flies through this round of high dose chemo, and we can get back to our summer.  I know there is a strong possibility of fever and delays…. but we are just going to stay positive.   If I’ve learned nothing else in all of this…. it’s that we absolutely cannot predict what is going to happen.   We will just enjoy the now. Try not to worry about the what ifs.  And just leave it in God’s hands.

We have clinic for count checks tomorrow morning, and are scheduled for her 2nd high dose chemo (ARA-C) 2 weeks from today.  Hope you all had a wonderful Memorial Day weekend!

Lots of love,

The Villarreals

Life lately.

 

Warning – picture heavy post

Not much to say lately… we have been doing our best to live our life as normal, happy, and playful as possible.  We do clinic once a week for counts and IV chemo, chemo pills at home, and have gotten through another week of steroids.   Maci continues to talk up a storm, learning several new words a day.  My current favorites are bubb-ble, waff-fle, puh-wease.  She figured out how to go up and down steps on her FEET (terrifying) and is loving swinging high in her tree swing.

She continues to be the BEST little mommy to ‘baby’.  ’Bay-beee’ goes everywhere with us, and I’ve even caught Maci feeding her crackers, her sippy cup, changing her diaper (on a changing pad of course), and wiping baby’s nose. She pushes her around in her doll-buggy, and puts her up in HER highchair.  She’s the first thing Maci asks for when we come downstairs in the morning (after we say hi to Kane of course), and we all know and are terrified of the ramifications of a lost baby.  She snuggles this little baby doll up in the crook of her neck and loves on her…. just like we do to HER.  She holds her up on her shoulder, like you would a newborn.  She pats her butt.  She gives her kisses in the car, and whispers in her ear.

WHERE do they learn these things?  I just love it.

We have one more week at home….. then back to admits, high dose chemo, neutropenia, isolation, hair loss, and worry.   Im dreading it and looking forward to getting it over with – all at the same time.

So overall, we’ve enjoyed lots of time outside and many fun playdates.  We hope you are all enjoying the sun and happiness that spring brings!  Love you all, and thank you for your endless support and love <3

J,M, MaciMoo

…. And here are some more of our faves from the last few weeks….

 

<3

 

 

Living our normal.

We are 3 weeks into Continuation I.  So far so good.  The doctors keep reminding me that this is a brief “relaxed” time in Maci’s protocol.  Don’t worry – I know it won’t last.

Snoozin after her last spinal + bone marrow….

The only big change in this phase (other than NO SCHEDULED ADMITS!) is that we have to give her chemo, at home.  Not too bad….except it’s a pill.  No liquid available.  And, to make matters worse…. Doc wanted us to give it to her in pill form.  Excuse me doctor, you do realize she is 19 months old, right?

Playdate with her buddies!

We gave it a shot. Twice. Both times I had panic attacks that she was aspirating the pill and that it was lodged permanently in her airway.  Oh. Did I mention we have to do this after she’s been sleeping for 2+ hours?  So she’s half asleep during the entire thing.  Yea.

ALL she ate during steroids week. Dunkin egg and cheese wake up wraps…..

Done with the pill. We are now dissolving it.  Which is also a big pain, because it takes about 4 hours.  So… if we forget at dinner time…. we are up VERY late.  Super fun.

Walking Kane….

But… after almost a week and a half…. and several middle of the night meltdowns…. John and I have a very well oiled routine.  And Maci barely opens her eyes.

diva.

Anyways.   We are enjoying our days at home and even having a few playdates here and there.  Momma has gotten to work a little bit!  The first time in SIX MONTHS!!  Im doing a few Fridays during this “lull” in Maci’s treatment.  Unfortunately it will be short lived…. will have to stop again in May when we go back to admits and neutropenia… but I am LOVING it right now!  It feels like a little piece of normal…..

Maci is growing like crazy – she gained 2 pounds in 1 week!  She is getting so old – more like a little kid and less like a baby everyday. She talks like crazy, LOVES books, LOVES playing crazy with dada, and always wants to be outside.

Mom is off to her first day back to work!

We had fun on her new swing set (thanks, Bear Necessities!) for about 1 hour.  The day after John put it all together (a 10 hour feat)…. the wind knocked it down and cracked it in half.  A blessing in disguise…. Im so very glad she won’t be playing on that piece of junk.

Uh ohhhh…

Word of advice – do not buy swing sets from Walmat.  For multiple reasons…. they are junk.  And the company is junk.  (Getting it returned has been a NIGHTMARE)  Bear Necessities on the other hand has been wonderful…. and are already helping us think up new ideas for a replacement “bear hug” for Miss Maci.

She discovered dirt.

best buds.

We enjoyed another AMAZING benefit last weekend.  Again, we were blown away by the sheer generosity and love that was shown to us.  It was such a wonderful day – we are so blessed to have YOU ALL in our life. <3

The good life…. breakfast in bed and Wee Sing in Silliville.

In other news…. I am so excited about a little project a friend has started.  An old friend from high school came to me last week about starting a fundraiser to help put together “pamper packages” for all of the ‘cancer moms’ at Hope – a gift the kids can give their moms for Mother’s day, and something the mom’s would really truly enjoy.  I thought it was such an amazing idea – these women are some of the strongest, kindest, most compassionate, nurturing, and fierce women I’ve ever met.

Maci’s stage. Dance party.

Any mother is without a doubt, all of those things- and would do anything for their child.  I know that.  But a mother of a child fighting cancer takes on a whole new set of qualities.

Constant CONSTANT fear, worry, and anxiety – while maintaining an exterior of cool, calm, happy.  Career on hold.  Family on hold.  Friends on hold.  And not a thought about it.  Anything related to ‘normal life’ goes out the window, everything is completely upside down and backwards.  And it will never be the same.  Hopefully better, but never the same.  Packing a bag for the day takes on a while new meaning….. that bag now contains all the snacks you know your child MIGHT crave after chemo, several changes of clothes for you and your child- just in case,  cell phone chargers, iPad and chargers, and of course…a serious supply of hand sanitizer, disinfecting wipes, paci wipes, etc.  And an extra “overnight bag” is always in the car….because there’s always a good chance of admit.  They watch their child be poked by needles, sedated, and pumped full of toxic chemicals on a daily basis…. and stand by to comfort, cuddle, and love while their baby is throwing up, miserable, in pain.  Do everything in their power to lessen their child’s pain.  They spend COUNTLESS nights living in the hospital, sleeping in extremely uncomfortable chairs with stiff blankets and woken every 2 hours.  No privacy. No control. About 400 square feet.  They eat hospital food and drink hospital coffee – don’t see or feel sunlight for days.  All sense of normalcy completely goes out the window.  Many have other kids at home…. they manage to make everyone feel loved and taken care of.  They summon strength and gumption they never thought they had when standing up to doctors, residents, prescription companies, insurance companies…. to fight for what is right. What is BEST for their child.  They wash hands, sanitize EVERYTHING, and constantly worry about germs, bacteria, and infection. A common cold is public enemy number one – and they will cancel all plans if there is even a rumor of a sniffle or sneeze in the group.  They stand by while listening to their doctors discuss (awful, horrible, scary) possible side effects or risks their child will face now….. and in the future.  Their new family consists of the (amazing) nurses, staff, child life specialists, PCAs, and cleaning staff at the hospital.  They hold down their screaming baby while trying to squirt foul tasting liquid down their throat, all the while feeling equally awful about it but determined to get every last drop in.  And sometimes it’s even the parent that has to give the shots.  It’s dark and deep and buried… but they live everyday with the possibility that this ugly disease might take their child from them.

This is  the norm- it’s not a once in a while thing.  It’s ALL THE TIME.  It’s life.

These moms (and dads too!) deserve to be pampered…. more than anyone I know.  I have been lucky enough to be pampered already by my favorite Mary Kay gal – and Im so excited I can be a part of helping her to now pamper some other moms fighting for their children.

If you would like to help….. here is the link to the paypal account: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=M2QSARMMBZCSJ

And here is a link to Jen’s Mary Kay website : https://www.facebook.com/groups/339499289494714/

Pas de pieds sur la table
*mrs gardner, i have no idea if this is right – i used google translator. but it reminds me of the boys speaking to me in french at the age of three….every time i look at it .

So, we have about 4 more weeks of peace…. and then we head back in.  5 day admit…. followed by severe neutropenia. Then another high dose admit…. and more neutropenia.

Dada is her favorite reader.

It’s funny…. these high dose admitted chemos never phased me before.  But now that we’ve had a bit of a break.  A little taste of normal.  Im terrified to start again.

Some more buddies!

But…. I’ll think about that next week.  We’re just going to enjoy our weekend!

girlfriend likes her watermelon.

Hope you enjoyed our little “update”  I realized I have to get my camera back out…. I havn’t been using it as much these days.  I miss it.  These are all phone pics….. and there’s just no comparison.

temper.tantrum.

Have a wonderful weekend, all.  LOTS of love to you!

The Villarreal Family <3

meow.
*she was so proud of herself – she finally figured out how to get this on by herself.

4th time’s a charm. we hope.

Sorry again for the sparsity of our posts lately.  Unfortunately & fortunately we have not had much to update on…. other than somewhat “normal” life.

We have been on quite a significant delay.  It’s been slightly stressful, as all delays are.  Of course my mind has to wander to the worst possible reasons for the delay….. but Im trying really hard to keep things positive. Maci has been so much fun.  We spend our days doing happy things.  We play with her babies.  We read books – a lot.  She picks them out and then plops down in my lap…. handing me one after another.

We practice animal sounds, colors, counting, and body parts.  I can’t get over how smart she is.  She copies EVERYTHING we do- we’ve had to start watching what we say.  Let’s just say I’ve heard several “Shhhhh….” come out of her mouth after mommy drops something or bumps her leg or spills something.  EEeek.

She is SUPER fast…. and runs around the house.  She especially likes when Kane and I chase her.  She LOVES playing outside, and just loves it when the other kids are out.  Whenever she sees someone she goes running and saying “Hiiiiiii”!!!!

We have clinic tomorrow and hopefully that ANC has come up and we can get Continuation I started.  Fingers Crossed.

Here are some pics from our last few weeks…..

Auntie Chrissy was here for a visit! 

lunch in the city

St. Paddy’s Day 2013….

my my how things have changed….. which one does not belong….

 

xoxox

Mag, John, & Maci

 

Still happily waiting.

First of all.  So very sorry that it has been so. very. long. since we last updated.

Life has been quiet. We have been “waiting” to begin Maci’s next round in her chemo protocol.  As usual, cancer/chemo is fooling us…. and we have had several trips home from the clinic after thinking “today is the day”.  Her counts have been on their way up.  For 2 weeks.  Each time we arrive, we just know…. this time they HAVE to be high enough. But each time we are, again, wrong.  Fooled.  Stumped.

I keep telling myself Im done trying to figure this all out…. trying to make sense of it.  But each time I find myself fooled again.  Oh well…. there are worse things out there than a bit of a delay.

Her docs are very pleased with how she’s responding….. and keep saying these delays are completely normal.  They can tell from her blood work that her marrow is coming around in a healthy way.  We just need to wait a bit longer.

I even got a “big picture” answer from one of her oncologists.  I asked overall…. how well did they think she has been doing so far.  One of those questions I know doctors hate because there’s generally no good answer.   But I figured, what the heck…

But…. a giant smile appeared and the words “very good.  we are very pleased” came flying out.

Now.  He did warn me that this was more regarding her tolerance to chemo and her ability to stay infection free during her severe neutropenia bouts.  He said they do (so devastating) loose kids during this intense period due to side effects and infection.  So with regards to that, she is doing well.  He told me that he can’t really speak to the Leukemia itself.  Due to the high risk nature of her cancer – she is on a VERY intense protocol.  Thus… these drugs do a really good job of keeping the cancer at bay while she’s getting them.  He said we will know more about the state of the Leukemia once she is in maintenance and off treatment.  A lifetime of worry.

But I will take my happy news and be happy about it.  Deal with the other crap later.

And right now we really can’t complain.  We have been fever free (scared to even say this out loud. i know i will be jinxing us.) since January.  She breezed through her last 2 very nasty high dose chemos (HD ARAC and Etoposide/cyclophosphamide…. for those interested ) without a hitch.  It’s actually a bit scary to me…. how “smoothly” the last few months have gone.

The “MO”of a true cancer mom.  Even a lull scares the sh*t out of you.

So.  We have been enjoying our time at home as best we can.  We’re getting a little restless and are ready for spring!  Maci stands in the doorway with her shoes in hand…. and gets VERY angry if she doesn’t get to go outside.  She loves watching Kane run the crazy dog laps…. and her new favorite pastime is walking up and down and up and down and up and down the curbs.  She loves to RUN. yes. RUN.  down the cul-de-sac.  And especially loves it when I have to go chasing after her.

So, overall, not too much to report.  Hopefully this Thursday will be the day.  Spinal, chemo, and bone marrow aspiration….. the start of Continuation I.  7 weeks of outpatient chemo!  Maci’s oncologist actually said the words…. “these next few weeks will be a little less intense”.  I ask him to repeat those last three words.

After the “less intense” we go back to admitted stuff and high dose chemo…. but we’ll take what we can get!

OH!  And, we just wanted to let everyone know about another WONDERFUL effort to help support our little girl.  The Come Through for Maci Lou Benefit will be held on April 7 at Bourbon Street.

You can check out their website : TeamMaciLou.com

or Facebook page: Come Through for Maci Lou 

for more details, tickets, etc.

We feel SO BLESSED by this amazing outpouring of support. xoxo

Lots of love to all!

 

Mag, John, and Maci moo

 

More of the same – good stuff.

Maci continues to do well.  We are again “recovering” from another high dose chemo she got last week.  So far…. she is doing well.  The chemo really didn’t phase her much.  She was her normal perky self.  We got home on Saturday afternoon… and we have been playing around the house since.

And awesome breakfast with some of our FAVORITES <3

I thought her counts would be LOW.  They were preparing me for very LOW.  But… yesterday at clinic… they were decent.

Her hemoglobin was good, over 7.  Her platelets and fibrinogen levels were borderline.  They decided to go ahead and transfuse… since this chemo’s effect doesn’t really even peak until Sunday. (They knew the levels would just keep dropping).

the greeting brigade…. waiting for dada to walk in.

dada?  DADA?  dada????

And.  Are you read for this?  Her ANC was 6400!!!!  SUPER HIGH.

In true Maggie form, instead of being happy…. I kinda freaked again.  Hah.

It just seems that this neupogen is REALLY getting her white count HIGH.  Which is fine – as long as there are no blasts.  They tell me that the neupogen will only stimulate the leukemia cells if the bone marrow is producing them already…. so if her body had already relapsed… it would just amplify it.  It won’t CAUSE a relapse.

Waiting patiently to be accessed, eating her eggy wrap.

And neupogen is IN her protocol.  And hundreds of thousands of kids get it.  Im sure if they were all relapsing…. this drug would no longer be in use.

Im trying to just let the medical people do their thing… and not think too much about it.  At least when it comes to the neupogen.

One of Maci’s very best friends at the clinic… we <3 Lino! 

Anyways.  Since her counts were so high…. we did a bit of shopping today and even went out in the snow!  She was a little nervous about the snow…. and wouldn’t move from where I placed her.  She is such a cautious little one.

Hopefully her counts will remain in a decent range and we will make it through this “recovery period” without another admit.

Playing potato head with one her favorite PCAs

Oh yea.  Did I tell ya?  Only 4 more scheduled admits.  Period.  Thats it.

And only 30 more weeks until maintenance.

And we have 7 ->SEVEN<- weeks until another scheduled chemo admit.

decided she’d look better in the sunnies.  obviously.

All of these wonderful numbers have been giving me an itch to get back to work.  Obviously not back to a regular schedule.  But now that Im registry, I have the flexibility to work when I’m able and when they need me.  Since we are heading into a slightly more stable time period…. Im thinking a day here and there would be so wonderful.   For me and for HER.

Nurses convinced us that Maci moo deserved this amazing toy after being such a good girl during her longggg day at the clinic. <3  She is one lucky little girl.

Talk about being ATTACHED to mommy.  Don’t get me wrong… I love it.  But she needs to be around other people once in a while.  I know it’s not good for her to be with me 24-7, 7 days a week, every day of the month.

hello snow.

So, we have a lot to think about.  I am super excited about the prospect of day here or there at work.  Back in my “old” “normal” life.  But I am also extremely concerned about finding someone to watch Miss Maci moo.  I thought I was nervous when I went back when she was a newborn…. whew.  We will have to do some investigating…. and hopefully we will come up with something.

Well.  Not much else to report.  We are settling in for a quiet weekend…. back to the clinic on Monday for more counts.

Happy Weekend

The Vills.

Love + some other stuff.

Im sorry for the lack of posts.  But – I have to say – it’s not because I’ve been lazy.  It’s because there hasn’t been much to update.

Good news in our book!

Maci spent 1 day short of 2 weeks at home.  And she was happy, healthy, active, and playful.  The entire time.  Like a “normal” 17 month old.

It was wonderful.  Amazing.  Heaven.

Yes, we were cooped up….. didn’t let her out of the house much until these last few days.  When I knew her counts were going up.  But we still stayed busy.  We baked some more.  We ran around the house chasing Kane.  We brushed our teeth three times a day (she LOVEs it.  Weird, I know).  Maci lost those adorable curls she’d been holding onto for so long (stupid chemo).  And we had a ton of fun.

These last few days, we got to have a few playdates with some of our favorites.  Always a great time- and a wonderful taste of our “old normal”.

Maci is back in the hospital for scheduled chemo.  It’s a new one – high dose ARAC (Cytarabine).  So we were all a bit on edge.  I’ve heard other “cancer moms” say this one is the worst.  Ugh.  Luckily – our Maci continues to laugh at chemo – and seems to be flying through it without a care it the world.  No nausea. No vomitting.  Still eating like a little piggy and being as feisty as ever.  She’s out in the halls – now doing a very fast walk/run – up and down.  Constantly.  She “handed out” her Valentines suckers yesterday to her hospital buddies.  (Well, mom handed them out, while Maci held 5 in each hand and refused to let go).  She has had 2/4 of her chemo doses, with no issues.  Gets one more this afternoon and one at 1am.  Then, she has one more type of chemo (PEG) tomorrow morning, that she’s had before, then we are outta here!

Hopefully.

It’s cancer.  Nothing’s ever a sure thing.

But of course our time here wouldn’t be the same without a little drama.   Luckily it was short lived, but still stressful.

Yesterday in clinic, her counts were HIGH.  LIke REALLY HIGH.  Like so high they had to send her blood work to the main hospital to make sure it wasn’t a mistake.

*high white count = possibility of leukemia cells.  it’s how most kids are diagnosed…. with a crazy high white blood cell count.

Of course I went into panic mode.  Dr. H tried to calm my fears – “it’s probably the Neupogen” “We see this sometimes”

*Neupogen stimulates bone marrow to produce these cells.  She’s been on it to help get her counts out of the tank.  It’s never put her into a “high” range though.

Nope. Uh uh.  I need some proof.

Dr. H told me he’d look at her blood work, make sure there are no “bad cells”.

So. of course the next hour or so was torture.  I know the nurses were trying to calm me down – telling me they see this all the time.  That kids have even HIGHER white counts sometimes…. all because of Neupogen.

My brain was saying, it all makes sense.  They’re right.  She’s fine.  Be happy that her immune system is so strong right now and quit freaking out.

 

My heart was breaking.  Wondering if this was the day they were going to tell me my baby relapsed.  When there’s bad news all around you… it’s hard to believe you’re going to get good news.

 

I saw Dr H slip behind the lab tech’s desk and look at some slides – held my breath.  He came out smiling.  All happy cells.  All neutrophils and good things.  No bad cells.

Thank god.

Now, I know Im probably being  a bit dramatic.

I know there are kids out there who have been through much worse relapse scares.  I know that.  And my heart breaks for them, and their families.  But, I have always been a worrier.  Before Maci was diagnosed, I was a constantly worrying.  About everything.  I guess most didn’t know that about me.  I’ve always kept the worries in my head.  I rarely say them out loud.  Unless, of course you are my husband or mother.  But, I even spare them the majority of my craziness.

Now, with cancer in our life,  it may be getting out of control.

I live my daily life without a problem – Happy.  Happy to be with my baby and my love…. and determined to make our life as “normal” as possible.  But, I’d be lying if I told you that dark word.  relapse. doesn’t creep into my mind at least a couple of times a day.

It’s scarier than anything I’ve ever dealt with in my life.  I can’t help but make a big deal about it, freak out even, if there is even the slightest chance it could be happening.  I know it’s something I will have to deal with the. rest. of. my. life.  I’m just not sure how.  But I know I’ll figure it out.

I mean do those people really exist?  The people that can just sit back and say…. it’s out of my hands.  Why worry about it?  And TRULY NOT WORRY.

Jeesh.  I’ll work on it  For right now, Im just going to focus on good things.  Our good news.  Maci’s joyful healthy spirit.  Her serious chemo-and-cancer-butt-kicking. The feeling of peace and completeness I feel when she reaches out for me or snuggles into me with that perfectly happy smile and says mama! How blessed I am to have such a selfless, dedicated, loving husband- and the soft change in his face when he’s holding our baby girl.  And of course….ALL the LOVE that surrounds us. From YOU. <3

Anyways.  It’s Valentines…. did you really think you’d get through this post without a little mush?

Hopefully we’re here for a short stay…. and Maci can get home and keep her counts in a decent range.  We were so spoiled last time – no fever/neutropenia after her most recent chemo.  Maybeeee we’ll squeeze through this one the same?

 

Here’s hoping!

 

Happy Friday friends,

We love you all…..

 

Mag, John, Maci moo