Monday, November 10, 2014

When the fear creeps in...

I feel like I hear often how strong I am and how wonderfully we're handling all this. 

I usually just say thanks and state "we're not doing anything any other parent wouldn't do in our situation."  I'm not one to graciously accept compliments.

For the most part, sure, we're handling things the best we know how.

Cancer or not, we always try our best to live our lives with a optimistic outlook.  We don't believe on dwelling on the past or what may or may not have been.  Another popular saying in our house is "what does crying get you?  Livi responds without missing a beat "nothing." Though it can be hard at times, we always try to look at the positive of every situation.  You give us a fork in the road and we're pulling up gps for new directions.  There's always something to be thankful for in the good and the bad.  That's just the way we try our hardest to live our lives.

The truth is though, we don't have a choice but to be strong.

As parents, we have to be the rock for Livi. She looks to us for cues on how to handle her diagnoses and what's going on in our lives currently.  We can't sit in the corner and cry every time she gets poked.....though no matter how much time passes, it never gets any easier to watch them poke a 3 & 1/4 inch gauge needle in your child's chest.  Every week, I literally hold my breathe till the nurse says "got it!"


I've learned it's one thing to know someone with cancer or to even have a family member with cancer....it's completely another thing to have cancer living in your home and staring you in the face day after day.  You can't truly understand cancer until you've been there watching the nurse come in week after week, decked out with hazmat suits and yellow toxic bags and to watch as they literally pour poison into your/your child/your loved ones iv.  To know you're going to have to watch them get worse before they can feel like themselves again......only to know you have to repeat this process the next week.

It's a draining process.  

Thirteen years ago, my grandmother took care of my uncle as he lost his life to cancer.  For years, I knew he was sick, but I never truly got it.  I never realized what was really going on.  These days, there are often times my grandmother and I will catch each others eye and both tear up....she knows the pain that's there.  It's a road I'm sure she never imagined one of her grandchildren having to walk down as a parent, especially at this early in the game. 

Thankfully, Livi got to finish her last round on time and we got to enjoy a full two week break in between chemo treatments. That two weeks is up already and in two days, we start the process again to hopefully get started with the next round on Friday.

This is when the fear creeps in.

Just a few weeks ago, I started to notice that there seems to be a cycle with each new round and new set of drugs.  Going into each round, we don't know how she's going to react to each new chemo she gets.  With chemo, there seems to be no middle ground....it's either ugly or it doesn't seem to phase her at all.  After we get a couple of treatments under our belt and we know what to expect, it seems we relax and our confidence seems to soar again.

It's easier then to say "we've got this."

I'll be honest, this next round is freaking me out and no matter how it may be portrayed on line....I'm scared as heck to watch her go through this next round.  I so badly want it to be over, but scared to move forward.

Round four is a handful and a half of new chemo and those dreaded steroids again.  It's chemo shots that have to be administered at home and day long treatments where her kidneys have to be flushed in ordered to be saved from the chemo.
 
And so there fear is here again and I hold my breathe till Christmas.

Hoping and praying that fear is gone by then.

That I can look her in the eye and without a single doubt say again "we've got this."


Wednesday, November 5, 2014

Little sister.

I was on a roll with blogging but then I came up empty the past few days.  Y'all should know me well enough by know to know I wouldn't make it every single day. 

I won't lie...this week is kicking my butt.

Time change has not been kind to us this round.  Actually, it hasn't phased Olivia one bit, but poor Amelia it's thrown for a loop.  I can't just say it's her either, I've been passed out at eight pm.most nights.  David had to wake me up to tell me to take my contacts out and even asked if I was feeling alright this morning.  Fall time change always does me in.

Speaking of Amelia....


Someone said to me the other day, they felt like they didn't know Amelia since I haven't blogged as much as I did when Olivia was younger.

I laughed and then I cried and then I laughed again.

Oh, Amelia...


For starters, we call her Milla.

Livi told me the other day she wanted another baby sister.  I just laughed, told her that ship had already sailed and then I asked "why?' She wanted a little sister that she could call Amelia. I said that it was a good thing she already had a little sister named Amelia, but she informed me her name was "Milla not Amelia."  I told her she can call her whatever she wants because that's a heck of a lot easier then having another baby.

Milla is either happy as a clam or mean as a snake.  She seems to have no middle ground.  It's all or nothing for her.

We like to refer to it as "passion."


We say on a regular basis that she's going to either change the world or end up in jail

You think I'm joking.

When she's in a good mood, she's the most sweetest and cuddly kid there is.  She loves being rocked and will still sit in your lap like a baby to drink a bottle at fifteen months old.  She does this sweet thing of tucking her arms in to her chest when you pick her up and hug her.  It's like she's trying to get closer to you and it melts my heart to pieces every time.


She has a laugh that comes from her gut and when she smiles, she smiles with her whole face.  She usually always has a paci in her mouth because if it's not a paci, it's some kind of small toy or poisonous plant.  You know, the kind of things that land us in the urgent care for x-rays. However, when she smiles with her paci in, it's the cutest thing.



She eats everything you put in front of her and everything she shouldn't (see above).  By the time she was a year old and a week, we had already had an ambulance ride, an er visit, x-rays, and had to call poison control. 


She's fallen off a kitchen table, from bed onto a concrete floor, and has hit her head so many times we've lost count.  It's so bad, I'm sure the kid has some brain damage in some form or fashion. 

She's a slow learner.  If she touches a hot stove, she'll touch it five more times to make sure it's actually hot (not that she's ever around a hot stove because y'all know I don't cook).

Where Olivia is a bottled up person and hard to read at times, Milla wears her feelings on her face and you know where she stands.


She has a temper.  For realz....the kid has a temper. If she's mad, you know it.

She's a hitter and a bitter. One time she went to bite me and I told her if she bit me, I was going to pop her in the mouth (total lie, I never follow through with my threats and my kids know this), she looked at me, popped ME in the mouth, and then laughed.  Being parent of the year, I was so shocked I laughed.

She knows when she does wrong and then she totally gives you that smile and you can't be mad at her....the total baby of the family kinda thing. She's bad and she knows it.

 

She's a mini David in looks and personality.  So much of her reminds me of David and that's why have no fear she'll do well in life.

She's the missing part of my heart. For years I ached for her and my heart has always felt full since she got here. 

Couldn't imagine life without her and now looking back, she was so worth the wait.

Monday, November 3, 2014

The Red House Tour ~Living room

One of the last times I blogged, I shared that we were moving back into the first house we ever lived in as a married couple. You can catch up on that story here.

It's been a little over two months since we moved in and I'm happy to say we've all settled in quickly.  For David and I, we were already familiar with the house, so there really wasn't a need to get used to anything. I'll be honest though, I was worried with how the girls would adjust. If you've been following our story for the past year, you already know that this is the fourth house that we've technically lived in this year.  Yeah, it's sucked, but that's life sometimes. 

Thankfully, all but one, the girls have adjusted to quickly.  My prayers were answered when they seemed to adjust quicker to the red house than any of the others.

Livi tells me on a regular basis how much she loves the red house. I think it's safe to say the red house has felt like home quicker than any other we've lived in. 

Any time a friend comes over for the first time, they immediately comment how the house fits us.  Funny story, my good friend Amy came over before we had moved in and the house was completely empty and she the first thing she said to me was "this house screams Amber." 

The red house just seems to fit "us."

I know people have gotten a glimpse of things here and there through pictures, but I've been asked by a few for more, so here we go...

Disclaimer: the lighting in this house is not the best.  Most of the time its kinda dark, but it comes across cozy to us personally.  Doesn't make for great blog pictures, but we like it. 

When you come in the front door, you're immediately dumped into the living room.


We do have a very small entry way with wood floor and a coat closet, but this is the best picture I could get.  A lot of the projects we've done since moving in are not necessarily the fun ones, but they've needed to be done and have made a big difference.  We've replaced almost all the window in the house and all the exterior doors, plus added storm doors. We're down to one door and four windows left to be replaced.

I need to paint the front door soon. I want to do a fun color, but I haven't been able to decide just yet. Suggestions???




We have a lot of big projects for this house and our goal is to get one done each year.  The living room is first on the list for next year.  The house is built where we can easily add a fireplace for not too much money or too much damage.  Our goal is to start next summer so we can have it finished before fall and the cold rolls in.  We're also planning on doing built in book cases on each side.   I'm super excited about this project.


This would make home decor bloggers weep...I don't style my bookshelves, I just throw junk up there. Actually, we need to add the fourth shelf from the set because it's packed way too tight even for me. I just haven't gotten the motivation to do it yet.


We also have plans to hang the tv on the wall because it's already been almost knocked over several times.  Once again...just haven't gotten around to it. It's on it's last leg anyway, so maybe David and I are both just secretly hoping it does and we have an excuse to get a new one without a big red blob on the right side of the screen.


We don't have a play room, I gave up on playrooms a couple of houses ago.  The kids never played in it and always ended up dragging the toys to the living areas, so now I use storage baskets to keep the things they play with most close by while the rest is stored in their rooms.  I also just have toys sitting out.  I know that's not magazine worthy, but it's the stage of life we're in now.  There will be plenty of years my house can look magazine ready, but for now, the toys in the corner make me grateful for where we are in life at the moment. 

Along with our fireplace, we're wanting to switch out the couch for the matching sectional at ikea.  The living room is on the smaller side and it would open up a lot more space plus add seating.  



It's the room where we spend most of our time as a family and we love how cozy it is.  We've already started making memories in it.  Excited to start making holiday memories in it with the girls!!!




Sunday, November 2, 2014

"The best Halloween Ever!"

As much as it saddens me to say this....my oldest child hasn't taken on the same love for Christmas as I have.

As each year goes by, it shows more and more that she's a Halloween freak. I'm still holding out hope for the little one.

It's not that I have anything against Halloween, I've just never really gotten into it. I'm trying for her sake though. I'm not quite ready to join in the costume fun, but I did make sure to buy a few new Halloween decorations this year....baby steps.

Olivia was scheduled for chemo on Thursday, so we weren't sure how Halloween this year was going to go. Let's be honest, the kid has had a lot of disappointment thrown her way these past few months, so we were really hoping her favorite holiday wasn't another thing added to that list.


Months and months ago, it was declared that we were dressing up as Elsa & Anna just like every other little girl in America. That promptly started the search for the best Elsa costume we could find. 


Confession....this is now the third Elsa costume we currently own.  It started with a cheap itchy one from the Target toy section (you know the ones I'm talking about), then we found a better looking one online through a costume store...it was better than the Target one, but not "Disney" enough for Nana and I.  At the end of August, we stalked the Disney stores every single week till the end of September until we got one we were happy with.

We've got issues. 

Thankfully, Anna wasn't as hard to find.  Poor Anna...always living in the shadow of Elsa.


I'm sure you're now wondering how the witches broom and hat fit into all this.

Well, after the second Elsa and Anna costume had already been bought, Livi found a witch costume she liked.  We declared it was too late to change and instead I bought her a witch hat and broom from Target. I didn't get a good picture of it, but Pawpaw attached an Elsa crown to her hat. You better believe we got many of funny looks over the past few weeks when people would ask her what she was going to be for Halloween.  Everyone is not familiar with "Elsa Witch."

Since she can't be around a lot of kids, we stuck with our usual Halloween routine and made the rounds in David's parents neighborhood. They don't get a ton of kids and it's small, so everyone knows us.

That means jackpot for David and I our kids!!!



This year Livi had an entourage.


Let's be honest, when you almost lose your kid/grand-kid/niece, you realize how precious life is and that you can't afford to miss a moment.


Livi had been tired the whole day, so we brought our trusty wagon to tote her around the neighborhood.  She surprised us and got a burst of energy and then walked the entire neighborhood!!! As silly as it might sound, that's a big deal these days. 


In case you're wondering why Amelia isn't in any of the trick or treating pictures, it's because she fell asleep ten minutes before we walked out the door.  Nana took one for the team and stayed behind with her and to pass out candy. We got a call at the very last house that she was awake and they were coming to find us. Unfortunately, she missed out so we had a dance party for her instead.  She was happy with that.



I'm happy to say that Livi declared it "the best Halloween ever!"

She deserved it.

Saturday, November 1, 2014

"Start with where you are."

My blogging soul sister finally called me out on blogging.

I confessed to her that I felt like every time I sit down and look at the blog, words seem to escape me. I just haven't been able to find the words just yet. 

Thankfully, she let me slide and we went on to discuss more important topics like homeschooling our girls and our favorite Hallmark Christmas movies that are soon to be aired.

As someone told me just a few weeks ago about something else in life..."start with where you are."

So, I know there are a lot of gaps to fill from the last few months and I know people waiting for me to say something life changing about dealing with your kid being diagnosed with cancer (totally joking), but I'm just going to start with were we are now.

Right now, we're back from a few days in the North Georgia Mountains...


If you know us for more than 2.5 seconds, you'll learn we're big fans of vacations.  They are a priority in our family and not to be skipped.  I'd like to say we're world travelers, but we can't quite claim that title just yet.  Soon enough though....

Since Olivia's diagnoses in July, we unfortunately have had to cancel two vacations....one of those being a BIG vacation to Disney world! :(  Don't fear though, Disney has been more than fantastic and helped us to rearrange everything for next year when Livi's done with treatment! :)

However, at the beginning of October, we realized we were all desperately itching to get away for a few days and we weren't mentally going to survive the next few months unless we did.  So, I gave everyone just one requirement...whatever we did, it had to be less than two hours from Livi's regular hospital. That landed us in the North Georgia Mountains with David's parents.


Besides the fact it felt like summer the day we arrived (let's not talk about how five days later its now thirty degrees and snowing where we were staying), we went at the perfect time.

The leaves were changing and perfect color. After the first day, there was a constant crisp and fog in the air. We got to have a fire every morning and ate way too many s'mores each night....the trip had all that magic fall brings.


With most things these days, our days are touch and go depending on how Livi's feeling. Besides sitting in the hot tub as much as possible, this trip we went in with no expectation or plans.

We did go into Ellijay one day and Blue Ridge the next, because the girls out number the boys by a landslide in this family and shopping is a given. They don't even fight it anymore.  They did get plenty of fishing time in, so don't feel too bad for them.

 

Otherwise, we spent our time relaxing and eating.  Two things we like to do a lot.


And let's talk about how much this next picture sums up being a parent of small children...David sleeping while Livi bangs on a toy xylophone right next to him.


 Home away from home for the week.



Let me state that our cabin was very nice, but the angle of the picture makes it look like it's a mansion.  I promise that's not how we Mabreys roll.

This was our road leading to our cabin. 

 

I became an expert at mountain road driving after our week. 

The best part...we had hardly no cell phone service or internet.  When you have a husband who gets calls 24/7/365, that makes for an amazing few days.  Not that we didn't check up on things when we went into town, but it was actually good to have a break and no access to the world for a few days. I highly suggest it to everyone.

So, that's where we are at the moment....fresh from a quick escape and ready to take on the next part of this journey. 

Saturday, August 2, 2014

Going back home.

I know I should talk more about what's going on with Livi, but I'm not just ready yet.  I've been trying to do updates on facebook to keep you all posted on how she's doing, but the blog has always seemed more personal for me for whatever reason, and I just can't quite yet find the words for these past few weeks.

So, lets talk about the other craziness in our lives....

We're moving in 10 days and doing a semi-renovation to our new "old-to-us" house!!!

Let me back up a bit. 

Yes, we just moved into the farmhouse back in January.  That move came with a lot of big dreams and seemed almost too good to be true.  The farmhouse is very special and means a lot to dear friends of ours and because I'm a sucker for history and traditions, I love the farmhouse for what it is and what it represents to our friends.

We tried hard to make it work for us, but after two months of living there, we had realized it wasn't working for us no matter how hard we tried.  Originally, we had planned to be there long term, but we were starting to think only a year or two would work.  We knew where we wanted to go next, so we approached David's parents at the end of March, and asked if a certain rental house of theirs became available, we wanted the chance to move in.  We were prepared to sit and wait another year or two. 

Well, a few weeks later, our neighbors told us they were selling their house and moving across the country.  At first we thought we could still make things work with the farmhouse and try our hand at all our original plans, even if it was just for a year or two, but things quickly became apparent that we couldn't keep up with farmhouse duties on our own.  Not long after that, David's parents approached us and told us they were willing to not renew the current tenets lease when it came up in September, if we wanted to go ahead and move in.  With the Popes moving to Arizona, we felt it would be best for us to go ahead and move on too.


So, to explain things, we're moving back into the house that we lived in when we first got married eight years ago.  While we were engaged, David's parents bought it to use as a rental and we ended helping rehab it and then moved in for three years.  BUT.....we were young and stupid and thought we wanted bigger and better, so we moved out.  We've said for years now that moving out of the red house (what Livi has named it) was one of our stupidest decisions and that we should have stayed put, but that's apart of growing up. You live and learn.

Exactly six years later, we're moving back in to our first home.  It has just the space we need, it's exactly twelve minutes from David's parents, it's closer to David's stores, and it has a lot of potential for future projects (which you know we can't resist).

The number of houses I've lived in all my thirty one years would probably rival most adults in their sixties, but oddly there are very few of them that I'm sentimental about.  I'm not one to get sentimental over a house, but the red house has always been one of those I do. It's not the house we brought our babies home to or anything like that, but it's the one where "we" began.

The part that sucks is that we're now re-rehabbing a house that we rehabbed nine years ago.  The renters over the years were not kind to it.  Also, we have to do this within two weeks.  Originally, we planned on just cleaning the carpets and painting things over time, but with Livi's diagnosis, we've decided to go ahead and get it as in good as shape as we can before she lives in it.  Mostly we're just painting everything, but we've decided to go ahead and completely re-do the girls bathroom.  We're also having a heating and air company come out and clean the entire vent system and installing an ultraviolet something to help keep any air coming in clean.  The healthier we keep her, the less time we spend in the hospital, and the less setbacks we have.

 (purple, of course)

As crazy as everything is right now, we're excited to be rehabbing and moving in a few weeks.  After all the disappointment July brought us, its nice to have something to take our minds off things for a bit.  Livi is excited to be moving into the red house and to have her own space (with a door that closes she says) again.  We're excited to have a school room and play room again, plus a guest room for grandparents!   Which is obviously going to be very much needed these next few months.

So, hope that explains things, we're going back home and it's happening just when we need it most. 

 (new windows)

Also, don't fret, the farmhouse is already been claimed for a couple of months now and the new family is excited to get in and make the farmhouse home!!! It's going to be in good hands!

Sunday, July 13, 2014

Like always....life changes in an instant.

Most of you have heard by now, but we got some life changing news on Friday.  

It's natural to say our world has been turned upside down, but I've decided I don't like that term and I'm instead looking at it as our lives have just been turned side ways for a bit. 

Life will be back to a new normal soon. 
 I'm determined and stubborn enough to make it happen. 

The story is a short one and something typical of a lifetime movie....in the wee hours of Thursday morning, Olivia woke me up complaining of not feeling well. She was running a high fever, so her and I were up most the night trying to get it under control. Around 7am that morning, she started throwing up non stop, by lunch she started throwing up blood. That would be when I decided to throw her and Millie in the car and rush to the Children's Hospital. We got there just before 2:30pm and she looked so bad, they immediately took her back to start iv fluids and run blood test. By 4:30pm, they had came in and dropped the bomb on us.  

They told us there was a possibility that this could still be just a virus that has taken her out. Though I usually try to remain positive, something in me just knew. Call it a mother's instinct or just a gut feeling. I knew that Friday was not going to be good news and life would never be the same. Every fiber in me knew we were about to start a battle with something big. Friday afternoon I walked down to get lunch with my mom and John, when I got the call from David that the doctors were here to talk to us. I jumped up and sprinted back to the ICU. When I walked in to see six doctors waiting for me, I shattered to pieces right there and probably cried harder than I've cried in awhile. I've dealt with enough medical stuff in life to know, it doesn't take six doctors to come tell you your kid had mono and you're going home tomorrow. 

If you've known me for longer than 2.5 seconds, you know I'm not one to sugar coat things or beat around the bush. 

So, here is is....Olivia has cancer. 

Acute Lymphocytic Leukemia (ALL) to be exact. 

Here's the good news, if there is any type of cancer you want to get, Olivia has hit the cancer lottery. ALL has a 85-95% cure rate. 

Hear that....CURE rate!!! That means there is a very good possibility that cancer will eventually be a distant memory in our lives. It means my girl will grow up and live a full healthy life and not always carry the label cancer with her. She will go to prom, she will get married and have babies of her own one day, she will be a Rockette one day like she always says she will be. 

We have better odds at beating this cancer than we do at winning the Mega Millions next week. As David told the doctors, we'd take 90% odds on anything you're throwing our way. 

So, yes....it sucks ass. No parent ever wants to hear their child has cancer. This is the stuff that happens to other peoples kids. But, it's the cards we've been dealt and last time we went to Vegas, we went home with more than we came with. 

As I told David, we've been dealt something that has great potential to be completely gone from our lives. There are not a lot of families who can say that medically for their children and with that, I feel blessed. 

The next few months/years will be rough. Everyday will not be pretty. There will be days filled with tears, setbacks, and fears. But there will also be just as many days filled with giggles, smiles, and dreams. 

One of our mottos in the Mabrey house is "we can do hard things." David actually started saying this to Livi when she was two and we often hear her spitting these words back to us. You can believe these words have already been thrown around our icu room over the weekend.

We can do hard things and we will. 

Last night livi and I were alone in our room and I told her, things aren't going to be easy. I'm going to be mean when I have to be (I.e. When she refuses to take her meds) and I'm going to love her and hold her hand through every step of this journey.  More than anything, I'm going to fight for her. There are going to be days she feels like giving up, but I'm not even giving her that option. She will fight this and she will beat this.  

This hard but beautiful journey starts today. Today we moved from ICU to the Aflac cancer wing and around noon tomorrow, Livi will go in to the OR to receive a pick line and her first round of chemo. She will also get a bone marrow test and a spinal tap. This is standard procedure with all ALL patients. 

We're learning a lot right now and have so much more to learn, so bear with me if I go back and forth on information about what is going on. They heard I loved reading and literally threw a bible sized book about Leukemia at me.  There is a lot to learn about our new normal. 

And that's just what it is....a new kind of life for us. 

One that's going to have hills and valleys, along with sunshine and rainbows. 

If there is one thing I've learned in my thirty one years, it's that none of us are promised an easy life. We are all given our own trials.  At some point in all of our lives, we're all going to fight some type of battle. 
Cancer is now one of our battles. 

I'm not angry. 
I'm not sad.
I don't feel sorry for us. 

Instead, I sit here thankful 

Thankful that she did get sick and we found the cancer.

Thankful that I seriously just got in the car, turned on GPS, and drove straight to the #11 Pediatric Cancer hospital in the country, without having a clue what the heck our future was about to bring. 

Thankful that the Oncologist who happened to be there that day has been doing this for thirty years and happens to be a part of the biggest research group for Leukemia in the country.

Thankful that they believe the cancer has only been living inside her for only two weeks to two months. 

Thankful for doctors and nurses who already feel like family and whom have literally held our hands and wiped our tears these past few days. 

Thankful that for the prayer and love that has surrounded us these past few days. The family that has stepped up and the friends who have come out of the woodwork to help us. 

Thankful that this is a journey that already has and will continue to bring us closer as a family. 

As I told Livi last night, it's time to fight and we're going to fight with everything we have in us. 

We can do hard things and we will.