Like Wildfire, It Spread.

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It’s 4:30AM and I woke up with this on my heart, swirling through my mind.  This is just a little glimpse of what it was like to watch Daddy fight small cell lung cancer.

It was a Saturday.  Mom and I were going shopping.  I had mentioned to Justin that maybe since the baby was almost 10 months old, it was time for me to buy some new jeans and finally give up my maternity jeans.  As he always does, he suggested I call my mom to join me and take off to town.  He loves clothes shopping… for himself.  For me or with me?  Not so much. So that’s what I did and that was the plan.  I talked to Dad on the phone then he passed the phone to Mom.  She and I got ready then Justin, Brynlee, and I went to their house so he and Brynlee could stay with Dad while Mom & I went shopping.

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As we went to leave I kissed Dad and told him “Bye” as I always do.  He looked at Mom and I and said “Don’t you think Whitney might want to go with y’all?”  For a split second, I thought he was joking.  He had this stare and he was very obviously frustrated as I told him yes, I was going and he repeated himself “Well, she might want to go with y’all!” in a heated tone.  In that moment, my world stopped spinning…. except it didn’t because that would be the easy choice and this life doesn’t offer easy options lately.  Instead I reassured him I was going shopping and walked out with Mom leaving him with Justin and Brynlee.  As soon as the garage door closed behind us, I looked at her and plainly said “It’s in his brain.”

The cancer had spread to his brain.  It was a Saturday and I was going shopping with my mom.  My dad knew this, but in an instant, he forgot who I was.  The next two weeks would be the worst two weeks of my life thus far.

Pop Collage

The next morning, Sunday, we had decided to stay home from church.  This is usually my idea, but this morning, Justin said he wanted to watch the kids play in the yard.  God works in mysterious ways sometimes.  If staying home from church is ever on the table, it’s always because I put it there- not Justin.  It wasn’t long until I received a phone call- my dad was at my uncle’s small church in his pajamas.  #1 Daddy rarely went to church and when he did, it was usually with me to our church.  #2  Daddy always cared how he looked and going to church in his pajamas?  Nope.  Not going to happen.

We would learn that week that his brain was covered with innumerable lesions.  The brain cancer was responsible for many actions of my Dad’s that were not at all normal.  That said, I firmly believe and know in my heart that he saw through the cancer and knew he wanted to spend some time drawing unto the Lord.  He allowed the church to pray over him.  That would be my dad’s last Sunday outside of in-patient hospice care.  It would be his next-to-last Sunday on this earth.

Father's Day Dad Hubby

After he got out of church, he called and apologized to me for some things he had said the night before.  Apparently my mom had filled him in, because I don’t think he remembered.  I accepted his apology through tears on the other end of the line.  I had kept it together and had not cried in front of him or on the phone with him until that moment.  There was no need to apologize as I knew it was the cancer talking when we got back from shopping and he complained about my “14 kids” and how he thought “I should get a job and let Justin stay home with the kids.”  I left his house that Saturday night broken and hurting, bawling my eyes out, because my daddy would never say those things to me.  He simply didn’t believe them.  He was my biggest supporter.  He wanted me to have as many grandbabies for him as I possibly could and he loved that I was a stay-at-home-mom.  I know that he bragged about my little family to anyone willing to listen.  Brain cancer said otherwise.

The family was called in and he spent that Sunday surrounded by people who loved him.  All he wanted was to sit with Brynlee in his big recliner so that’s what he did.  Things would go downhill that week as we watched the cancer terrorize my dad’s brain.  I spent Sunday and Monday night with Daddy.  Justin spent Tuesday night with him.  Wednesday, Daddy took a nap and woke up a different person.   Things were done and said that I don’t know if I will ever be able to write about.  Maybe I’ll write about it one day, but I’m not sure if I will ever share.  Small cell lung cancer is a horrific disease and it can and will attack the entire body, but for my Daddy, watching this brilliant man lose his mind was the hardest part.

photo by KC Photography

photo by KC Photography

Two weeks later on a Saturday, I stood in Skirum Cemetery as I watched a crimson Alabama vault be lowered into the ground.  Inside was my dad’s body.  Even in death, he was a beautiful man.  Even after an excruciating 4.5 month fight with cancer that overtook his entire body, he was gorgeous.  He had asked us to close his casket.  He didn’t want people to talk about how the cancer had aged him in such a short period of time or how badly he looked and so that was our plan.  He was always a bit vain when it came to his looks- Roger wanted to look good.  There was never any question- we would see him as  family and then close the casket.  Except when we saw him, he looked better than he had alive in his last days.  Everyone in the room began to second guess that decision as whispers swirled about how good he looked- at peace finally- and so that is why we knew we had to leave him open.  I’m not exactly sure what he would think about that decision, but I like to tell myself that if had been there to see himself all decked out in Crimson with that sliver facial hair shining and beautiful skin (it was like baby skin because he had been badly burned in 2000- an painful facelift, if you will), he probably would have said something like, “Damn, I look good.  You better leave me open!”

As I stood in that cemetery, I was mad.  Not even so much that I have to spend the rest of my life without my dad and my best friend, but because of what the cancer did to him before God finally took him home.  My dad was the smartest, hardworking man I had ever known.  He told me once that when he died, he wanted people to say “He worked until the day he died.”  So I will say that because it is true.  He worked until the day the cancer completely took over his brain and it was no longer safe for him to work.  Even then, everyone was worried about how he would take the news that he could no longer work.  I sat across from him in the living room that Sunday night and said, “Daddy, I think it’s time for you to stop working.” and in the saddest tone he replied “Yes, me too.  It’s dangerous, isn’t it?”  We never said the words, but in that moment, I knew that he knew and he knew that I knew that the cancer had made it’s way to his brain.  I was so worried that I would have to take his keys and I’m thankful it never came to that.

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I miss him with every ounce of my being and I am still so very angry about how those last 2 weeks went but I know that Daddy is resting.  After he drew his last breath, I kissed him and told him to rest, that his rest was well deserved.  In the days before he passed, I talked to him about heaven and tears rolled down his face.  Most people thought I should shut up and not upset him, but I know that he needed to hear from me in that way.  I told him that I would be tough because I was his and I don’t think you can be Roger Mars’ daughter without being at least a little bit tough.  I asked him to save me a spot and I know that he will, that he is.  I can’t wait to join him one day.

New Normal… Again

me dad

It’s been over 2 months since I’ve written anything.  It’s beyond hard because I just don’t know what to say anymore.

My dad passed away October 9, 2014 after a short but hard fought battle with small cell lung cancer.  I didn’t write here about his diagnosis other than mentioning it once simply because he read my blog and I didn’t want him to come here and read about how depressed I was knowing I was losing him.  So I just quit writing altogether to avoid that.  He was diagnosed in May and passed away in October- it’s unbelievable and I feel like my heart has been stomped… again.  Since 2012 I have lost so many people I loved- 6 to be exact- and it feels like it’s never going to end.  I begged God to take my Daddy and end his suffering because sometimes you truly do have to love someone enough to let them go.  Knowing that I will see him again one day is the only thing that keeps me going at this point- that and my children.  They are heartbroken as well.  Pop was their world.

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Photo by Kayla Cobb at KC Photography

Brynlee underwent cleft palate repair surgery October 14, 2014.  Yes, it was a crazy few weeks.  She is so strong and did amazingly well.  We spent the night at Children’s of Alabama and she was released the next morning.  Her recovery has been astounding.  She weighs 19lbs 10oz and is almost 30 inches long.  She completely skipped 9 month clothing and went from 6 months to 12 months.  She wears mostly 18 month pants and leggings because she’s so tall and has thunder thighs.  :)  She goes back for her cleft repair follow-up and another modified barium swallow study November 6th.  She just started crawling!  She can also sit up and is still just a delight to be around.

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We started our homeschool year and it was going fantastic, but with Dad’s sickness and Brynlee’s surgery, we have taken October off.  We will begin again in November and probably not take as long as I had planned off in December to make up for lost time.  One of the reasons I wanted to homeschool this year was because I know things were going to be tough on the kids when Dad passed away so I feel like we definitely made the right decision keeping Bryson home.  Bryson is reading, spelling, sounding out words, counting to 100, and doing some basic math.  I’m so proud of him!

fall fair 2014 collage

These pictures are from the fair- 2 weeks to the day before my Daddy died.  He didn’t feel like going, but he had not missed a fair since Bryson was born and he knew it would be his last so he went anyways.  I’m so thankful for those last few memories we made together- picnics at the playground, the fair, playing h-o-r-s-e in the driveway, and simply spending time together.

I don’t want to quit writing so hopefully I can return to my favorite form of therapy now that we are learning to live with our “new normal” again.  What is normal anyway?  For us, normal is ever changing.  One year ago, normal did not include cancer, trachs, feeding tubes, surgeries, pumping, syringes, etc.  We just keep going- that’s all I know.

Brynlee // month eight

pierre robin, pierre robin sequence, trach baby

8 months old, say it ain’t so!

at 8 months, sweet Brynlee, you are taking off!

You weigh over 17lbs now- a far cry from that 10lb 4 month old who was sicker than we knew at the time.  I’ve never been so happy and proud of baby chub!  You wear 6-12 month clothing and 12 month boutique clothing.  You received breastmilk exclusively until you were over 6 months old.  With the stress of every day life and all that we’ve gone through this year, my supply tanked and I went through our freezer stash.  I still pump for you 3-4 times a day.  You receive 12-15 oz of breastmilk per day and then your other feeds are formula.  It was a hard pill to swallow as I wanted only the best for you, but I have accepted it for what it is now and moved on.  I’ll pump for you for as long as possible with a goal of 1 year and then 2 years.

pierre robin, pierre robin sequence, trach baby

July was a BIG month for you.

You began physical and occupational therapy.  After only 3 sessions, you were sitting up unassisted and loving your new freedom.  We love your team of therapists and they love you!  You are working hard and though you sometimes cry, your progress is wonderful.  Now that you can sit up, that’s all you want to do.  You’ll begin speech therapy later this year or early next year.  We are learning ASL and signing with you so we’ll have a way to communicate even if you can’t make sound quite yet.

pierre robin, trach

You were discharged from home health which was bittersweet for all of us.  We are happy that you are healthy enough to be discharged but will miss Jaime.  When you came home from the NICU and we found out there would be a nurse in our house several times each week to check on you, that did not sound like fun!  But then Nurse Jaime walked through our door on that Saturday and she fell in love with you and we fell in love with her.  She became more like family that “just” your home health nurse.  Bella would even sometimes cry when it came time for her to leave.  We know we’ll keep in touch and she’ll probably be back to check on you after your cleft repair surgery this fall.

pierre robin, trach

You continue to sleep through the night and rarely require suctioning overnight.  We usually put you to bed for your 8 o’clock feed and you sleep until 7 or 8 in the morning.  You prefer to sleep in your bed.  You also enjoy sleeping in the car, but you always wake up when we arrive at our destination.  You are not a cuddly napper- you want to be left alone with your pacifier.  There is no rocking you to sleep.  This is a good thing, but I sure would enjoy holding you as you slept sometimes.  You take at least 1 good long nap every day and a few cat naps.  On the days we have a lot to do and aren’t at home, you are fussy without your sleep.  Updating to add that as soon as I wrote this post, you decided you really did want to cuddle and sleep on your mama every once in a while.  I love it!

pierre robin, trach

You “eat” at 8AM, 12PM, 4PM, & 8PM.  Your day feeds are at 5oz and you receive 8oz overnight.  We stopped adding extra calories to your feed and you lost a little bit of weight so we fortify with a 1/2 scoop extra of formula per 4 oz during your feeds.   We were hoping to begin bottle feeds but another swallow study showed that you are not ready for liquids.  You passed your swallow study with super thick pudding-like foods so you do get to enjoy baby food now!  We add rice cereal or oatmeal to baby food until it’s thick enough and then you eat it up.  So far you’ve eaten pears & raspberries, peas, mango, bananas, and sweet potatoes.  You’ve turned nothing down but the sweeter foods like the pear & raspberry mix are definitely your favorites!  You are eating baby food once daily for now.  We have to watch you closely for signs of distress and aspiration (which stresses your mommy out!) and your food goes in your cleft and out your nose which is uncomfortable for you.  I keep the suction machine right beside you so I can suction your nose (you do not like that!) and your trach while you are eating.  Feeding you baby food is a lot of work but it’s so worth it!

pierre robin, sweethoney charlee

You continue to be our most content baby thus far.  And since we are pretty sure you are our last, I guess you get the award for “most content and quiet baby” in this family, haha.  You personality is calm and happy much like your dad.  Your temperament is sweet.  You are rarely mad and are as far from a diva as possible which is great since your sister has that covered.  Over the past week or so, you’ve entered into the separation anxiety phase and you want your mommy by your side or holding you most of the day.  If I can leave the room without catching your eye, you are okay with Dad until you spot me again.

You have two cute, crooked bottom teeth!  Those little teeth are sharp and you love to chew on my finger with them.  It hurts!

pierre robin

Appointments are finally beginning to slow down though therapy sessions have taken their place.  You had another g-tube change and we got the okay to change it at home from now on so you don’t have to go back to Dr. Gilbert for 1 full year!  You see the ENT every 3-4 months and cleft clinic every 3 months.  The quiet won’t last long though as you’ll be having surgery before we know it.  Your reflux is still under control with the new medicine so you only see the GI every 6 months as well.

pierre robin

We are so proud of you!  The other day, I was holding and cuddling you and I said “Everyone needs a baby like you!” then I laughed.  A few months ago, I wouldn’t have wished this on my worst enemy and now I’m saying everyone needs a baby like Brynlee.  God has turned things around for you and it feels so good to just exhale.  You are so healthy and happy, so content.  You very rarely whine about anything and you’ve given everyone who comes into contact with you a new perspective.  We look at you and see how happy you are after all you’ve gone through in your short little life and it humbles us.  How dare I feel sorry myself or you when you do not!?

pierre robin

I love you little girl.  I love you more than you will ever know and I am so glad you are mine.  Your little life hasn’t been easy, but you are such a blessing in my life.  I look at you and I can’t help but smile.  You make my heart beyond happy and bring such joy to everyone around you.