Four Hospital Trips in one Week

We ran to the Huntsman last Tuesday, again last Friday, we spent Sunday night in Logan ER then returned to the Huntsman today.  There has been over 8 liters of fluid drained from the lining around his right lung.  Today they surgically placed a drainage port under his right arm.  The procedure was tricky and it took a lot out of him.  He is in a lot of pain and is very weak. 

While killing time Mark and I played hangman.  Here is one of our games.  Of course we started singing the song in Louis Armstrong voice and that got me laughing, and unfortunately when Mark laughs he has painful coughing fits, so I stopped.

Thanks again to all who have helped with childcare, errands, meals etc.  We have a lot of company coming in this week for Ava's baptism.  I'm thankful for all that are helping me prepare for that special day. 

Lately when I pray, I don't know what to pray for except peace.  Peace for all of us.

 

A Day of Rest

"Come unto me all ye who are weary, and heavy laden, and I will give you rest."  Matt  11:28 (look, my name is in this scripture!)

We need rest today.  Mark was good, relatively speaking, for the 24 hours after the drainage of his right lung.  We had dinner at the Keens, and I stayed home Saturday and worked in the garden with Mark sitting in a chair near me.  I want to thank Beck for running Aubrie to her dance competition, helping me in the garden, and taking Amari and Ava to a birthday party.  I also want to thank my mom for taking the little girls in the morning. Thank you to Suzy for bringing Aubrie back from Tremonton.  Thanks to Karen for a big hug and big chocolate supply.  Thanks to the ward for doing the awesome mini-missions that Andrew, Aubrielle and Ammoriah got to attend.  They had a blast "serving" in Italy, Washington D.C. and Holland.  They had great stories to share with us.

By Saturday night things changed quickly.  Mark was leaned forward in his chair trying to get more oxygen,  he wasn't talking so I knew he was hurting.  We sat together for awhile then he asked for Gatorade, so I jumped in the car and grabbed some in my pjs and flip flops.    I asked him if he wanted to go to the ER or try to make it until Monday and go to the Huntsman, he said neither.  He doesn't really want me around when he is like this, but he needs me.  I can't really talk to him, I can't hug him, kiss him, hold him or tell him how I'm feeling.  I sit 'alone' in the dark wondering if I'm doing all I can and how to best love him and serve him.  I go to bed late at night with a cry-headache.  Needless to say, I have terrible dreams. 

This morning he was doing a little better.  He got a bath and that seemed to help.  We both rested and kept the kids mellow and happy.  This afternoon he surprised me by stating he wanted to teach his class.  I immediately thought "no way!" but realized that this is so important to him that he had prayed for strength to do it in our family prayer.  I knew not to argue with his decision and said that I would go with him and make sure he was alright. I helped him get dressed for church.  He slowly buttoned up his white shirt and adjusted his tie.  He looked me in the eye and said, "I love wearing the uniform for the army of God.  To be called to serve Him and teach His message." That is so Mark.  Of course, that made me cry.  He was exhausted just going up the stairs into the church.  He meditated right up until he gave the lesson, which was "Are you prepared to meet God?"  I brought a pack of tissues, because this was not going to be easy to discuss right now (for me).  It was beautiful.  Most of the lesson was a discussion of how to balance complacency and zeal in the gospel. 

Now we are resting.  Tonight we may go to the ER and tomorrow we may go to the Huntsman.  Right now we are just resting.  It is good. 

It's OK not to be OK

Last night (Thurs night) was a tough night.  Mark had some interesting dreams that could be interpreted as "life flashing before your eyes", he woke up very disoriented.  I got the girls up early, ready for school, loaded up in the van, packed overnight bags...just in case, and got Mark into the van.  He was winded and hurting from just the few feet from the living room to the van. :(

We dropped the girls off in Hyrum with my mom to take to school, and to keep Amari for the day.  We drove to the Huntsman again.  Mark cannot talk when he is like this and so I listened to music and sang along but I swear every song was about someone in love who has to let go.  Ugh. 

When we were there on Tuesday, they took 2 liters of fluid from his right lung and said it was unsafe to take more.  We were told it may return but it could be months or at the very worst, a week, before it got that bad again.  I don't know why his condition deteriorated so quickly.  In only 2 1/2 days an ultrasound confirmed his lung area was full of fluid.  They drained over 3 liters today, and I don't know why it was safe to take that much today when it wasn't on Tuesday.  They don't even have Tuesday's test results back yet. 

Like I always do, I ask a lot of questions, so does Mark.  The answer is usually "it depends", because Mark's cancer is so rare...who knows? 

So many of you have reached out to us to serve us.  I've been saying no to meals, but decided recently that it really is super-helpful, so for now I'll say yes.  Nikki and Todd Oswald brought us dinners, so have Carrie Keen, and Helen Lundahl.  Tonight Cindy Maughan brought us so many ready-to-eat meals, and groceries for anything the kids might want.  She shared love and knowledge, and even put lotion on Mark's feet.   Beck has come up for a few days to help out where she can.  She loved on the kids and stayed with us.  That's good medicine.   Mark was actually feeling like getting out, so we surprisingly made it to the American Idol party.  It was pure heaven to enjoy our good friends, our bacon-themed dinner (excellent!), some good love and laughter!!  Britney Tyger gave Mark a  foot rub for better circulation.  The men (Todd, Mike and Tex) all helped Mark get to the car when his pain meds were running out and it was time to get home.  It was really nice to laugh again.

So what's next?
Mark rests and heals up and stays as busy as he can without taxing his energy.  If his lung fills again, we'll head back to the hospital.  Next Wednesday there will be a permanent draining port placed under the skin under his right arm pit.  We will be able to drain the fluid as  needed.  The sad part about this is that Mark is instructed not to go swimming with this port.  He swims for comfort and rehabilitation.  This is really a tough thing to ask of him. 

I want to sincerely thank you all for your continued love and support.  You don't have to post comments for us to feel that love.  We know.  It is what makes us able to keep going.  I mean that.  We love and thank you.

To love deeply...

We've said our goodbyes just in case.  We've had to, several times.  It sucks.  There have been times I've felt like Mark has had one foot in each world.  It is surreal.  Last night Mark and I sat in our living room with only the light of the fireplace, and the moon.  We had one of our powerful talks.  Although we are home, and Mark is better in some ways, he is worsening in other ways.  We took inventory of all of the pains that don't subside, there are about 12 issues.  My sarcoma sisters (my close friends Holly and Stephanie who lost their precious husbands to sarcoma cancer) say that pleural effusion is par for the course.  This is what I found in my hours and hours of research;


 Pleural effusions from a malignancy for which there is no effective treatment portends a poor prognosis. Median survival for patients with an effusion due to metastatic cancer averages 3 months. Drainage alone improves comfort, but does not affect survival.

In our talk last night we discussed the value and the mercy of having this time together.  Even the practice in letting go has served a purpose of exercising faith and experiencing comfort beyond my strength (a beautiful gift!).  He counseled me in my grief, that sadness is a good thing and a part of acceptance.  I expressed to him that I don't believe I'll ever really accept the loss, but learn to live with it, which isn't the same thing.  From what I'm hearing from several friends who have lost spouses (I'm surprised how many friends I have that experienced this, I am humbled by your examples) I will always have a part of me that grieves; can get angry about it, fearful, and profoundly sad and there is no end.  I feel that deep within me.  To love as deeply as I love Mark will obviously affect me when I ache for that part of me to be filled by his energy. 

Our plan for now is for Mark to rest up, do some computer work from home and we'll return to Huntsman next week to drain the fluid again.  He isn't doing as well as I thought he would after having so much fluid removed.  One day at a time, we'll keep on keeping on.

On our way to the Huntsman I heard a favorite song of mine by Nichole Nordeman, she sang, "Thank you Jesus, even when the pieces of my life are broken and small, dreams shattered, and scattered like the wind....thank you even then".  I do feel this way.  We turn our lives over to our Lord and trust in his plan and his love.

 

Our 4th Spring at the Huntsman

This morning  as I drove Mark to an unscheduled trip to the Huntsman I realized this is our fourth springtime coming here.  I saw the familiar big field of daffodils as I exited off 400 South.  The trees are covered with dark pink, pale pink and white blossoms.  The tulips are in bloom along every street.  I also realized a guy in roller skates could maneuver down town SLC just as quickly as I could in my van. I think I see these details to prevent myself from focusing on the task at hand.

So here is the update on Mark's health.  Forgive us for not posting sooner, we had our reasons.  It's been a week now that Mark has suffered more pain in his lungs, greater fatigue and difficulty sleeping.  He went to Nevada anyway for a two day work trip, and his schedule was packed.  When he arrived home late Friday night and I saw his condition I was truly worried.  He couldn't breathe.  He ran a slight fever.  His cough was constant, and talking made it worse.  He couldn't lay down and needed to sleep upright in a chair.  This situation worsened over the next few days, a humidifier helped but a hot bath made it worse.  Our friends Johnnie and Ron came over to give him a blessing.  Our friends Todd and Nikki brought us dinner.  They can all attest to his extremely poor condition.  We assumed it was pneumonia.  All signs indicated so.

Mark did not want to go to the Logan ER.  We knew that in his high risk condition they would admit him and he absolutely did not want to stay there.  By Tuesday we both decided he needed to go to the Huntsman and run the tests and see if there was anything to be done to help.  Our nurse Katie took care of everything before we arrived today.  It's after 5pm and we've been in the acute care center all day running tests.  The doctor there asked many questions and correctly diagnosed the problem before testing confirmed it. It isn't pneumonia.  It's a Pleural Effusion of the right lung.  Mark had almost 3 liters of fluid in the lining around his right lung, compressing it to the point that there was almost no air circulation on that side.  They are now running tests and will do a follow up xray prior to letting us go home.

You've heard the phrase "sick with worry", well I consider myself a faithful, hopeful person but it doesn't change the fact that I worry about Mark.  I worry about his comfort, if his needs are met (immediate and the future that he won't be present for), I worry about the kids reactions and needs, I worry that I will never be ready to let him go, I worry about the conversations I must have with all those who love him, I worry that I'm not worrying enough!  Ugh.  I'm typing this from the underground parking garage because I needed a moment alone to process all of this.  I'm still not okay.  I haven't slept well in days (of course, neither has Mark).  I am so thankful for the emails, texts and all the prayers that have been offered in our behalf.  It makes a huge difference.   We love you all.  We are grateful that we don't endure this alone.  We appreciate the kindness and service you've shown to Mark, me, and each of our children.  Thank You.

Preparing for Baptism Day

Ava Olea Kailing

Happy Birthday to our Ava!

     This is a perfect birthday weekend for Ava, first baby animal days and now a big party at FunPark!  She had the best time!!  Ava is our little "surprise package" child.  We were in the final stages of adopting a little girl when we learned I was pregnant.....very pregnant. (We did not cancel the adoption, but months later the adoption fell through).   After spending over 5 years and lots of money on infertility treatment, I learned it would be highly unlikely for me to conceive with or without medical help.  Imagine our surprise when the ultrasound confirmed I was 6 months pregnant.  Ava has kept us guessing ever since.
     Ava has never followed traditional paths.  She is a trailblazer.  She dances to the beat of her own drum, in her own band, with her own audience.  She's such a funny, interesting, adorable daughter.

Kissing the birthday girl's cheek (tradition)

Amari and Emery play the duck game

Ava picked out her cake, it was yummy!

All the little girls! Ella, Emery, Ava, Amari, Bethani, and Arianna

Fruit Ninja was a favorite game

Sisters Ammoriah and Aubrielle with friend Ashley counting tokens

Mark and Andrew



Little Girl party fun!  We used the tissue in the gift bags to make hair bows :)

Which prize to choose??

Ava kills it at air hockey

The girls at the Soft Play area, laughing a lot!

Baby Animal Days at Jensen Farm

Baby animal days is a big deal to our little girls!  Ava looks forward to this like nothing else!  With the rain this morning, we didn't have to wait in any lines, and that was perfect.  Sorry I didn't catch a picture of the baby bears.  Most of them were asleep, but there was one brown bear, that was so full of mischief, he was super cute.  We enjoyed watching him chase and catch his trainer.  This was a great day!

Ava on pony ride



goats

Holding the ducks



baby ducklings

Riding the train



face painting a chick on her cheek

Amari is a puppy

Amari rides a pony named Loredo, but she called it Burrito

Ava is in love with this bunny



Can we keep him Mommy?  Please??????

Aubrie had a baby chick that was so chirpy!



This is the closest I've ever been to an owl, so beautiful!

A white peacock!  Gorgeous!

Tortillas

   Like my siblings and my cousins, I have fond memories of my mom and my grandma making tortillas, in large quantities, for us to enjoy.  Over at GG's (great grandma Huerta's) us kids would sneak into the kitchen and snatch the tortilla on the top on the pile that was covered by a kitchen towel to keep it warm.  If we helped make tortillas, it was always fun to see what shape you ended up with, like Aunt Sandie said, they never come out completely round.  Sometimes they look oval, square, or like the state of Texas, but they always taste delicious!! 

     Today my mom came over to teach my daughters the art of making tortillas.  The ingredients are simple; flour, shortening, baking powder, salt and warm water.  We don't measure anything, somehow you just know how much to put in.  We rolled out the balls using water bottles for rolling pins.  We managed to get flour everywhere, but we had a blast.  I know store-bought tortillas are cheap, but they cannot hold a candle to the taste of homemade.  (Sorry Dan, they are all gone already, so no tacos on Saturday.  We'll make a big batch next time.) 

¡Gracias mamá! Aprecio cuando enseñas a mí ya mis hijas acerca de nuestra herencia. Era agradable pensar en la abuela y nuestra familia. La próxima vez vamos a hacer tamales y bailar al ritmo de Ricky Martin!

Grandma mixing the dough

forming the tortilla balls, back in the day she could do this step so fast!

rolling the tortillas flat

Watch for the bubbles

I can just smell this!

When we were kids we'd rub a stick of butter over the top when it came right off the skillet, YUMMY!

So good!!

To Hope, or not to Hope, that is the Question

     It's taken me a few days to process our day at the Huntsman.  On Wednesday, March 27th we spent a long, long, day at the hospital(s) running tests, infusion of meds, cleaning the port in his chest, and the CT scan.  Mark has to drink the contrast fluid on an empty stomache, and he ended up nauseated during the entire day (that stuff tastes aweful).  He had low energy, and felt unhappy to have to be in the hospital again. Every appointment was running late, we sat for hours in waiting rooms, with Mark in pain. It was not a good day.
     Hope, that beautiful word has been a source of pain and joy for me these years in the cancer world.  I've held out hope to varying degrees for a miracle.  We've had several small ones, and those have been wonderful for us!  I am now in a place of complete surrender to God's will.  When Mark shared the Easter lesson in our combined Relief Society/Priesthood meeting yesterday...he spoke of doubting Thomas.  Thomas loved Christ so much that he dared not hope for something so big, so great, as to believe he really could overcome death.  I think I can relate to Thomas in that kind of love.  I love Mark so much, that I no longer dare to hope for something so big, so great, as his life to be spared.  Everytime I do hope, I hurt more and more everytime I'm shown the path before me.  I've felt this loss countless times already. 
     Mark is strong and fearless in the path before him.  He gets discouraged on occasion but it never lasts for long.  He has also never lost hope in a miracle.  However, after our meeting with Dr. Gouw to discuss the results of the CT scan, I saw the hope fade and this time I hurt for his loss of hope.  I hurt to see him accept the inevitable....again.  Our drive home was somber and tears streamed down my cheeks.
     Dr. Gouw gave us some useful information, but most of our meeting was covering what we already know.  Without chemo treatments all of the tumors are growing.  The two largest are the size of tennis balls (but not perfectly round).  The tumors are not fast-growing right now, which is nice to hear.  The doctor said we still have "months" ahead of us.  I will let myself dream about Mark being able to baptize our daughter Ava on May 4th, and I will continue to make plans for our birthday bash, believing that he will be able to party with us.  Don't ask me to set plans for this summer though, we'll take that one week at a time.  
     One thing is for certain.  If Mark had not done chemo treatments at all, he would've died in 2011.  His perserverance through treatment has bought us a lot of quality time together.  I am so grateful for the medical treatments we've had, and incredibly grateful for Mark's strength to endure them. 
     So, do we hold out hope????  We do.  We hope that our time left together is filled with more adoration, and sharing with our children.  We hope that we've done and said all that we should to eachother and our children to prepare for our time apart.  We hope that our faith in Heavenly Father's plan of salvation will bring peace to us all.  We hope that we use these lessons of love and loss to allow us to have deeper hearts.  We hope that our story will somehow bless our family and friends.
    Hope is a beautiful gift.

   

    

Our Colorful Easter Weekend

Let's get this easter fun started!

Our eggs, including the Duran Duran album cover eggs!

Easter Weekend:  An unbelievably spiritual fireside about the life of Christ, love from Karen & Greg,  A visit from by best friend Charity and her husband Victor from Twin Falls, dying eggs, hiding and finding glow-in-the-dark eggs, staying up 'til 2 am for three nights, big Saturday breakfast, egg hunt with friends at the Davis', several work meetings to finish up end of the month and end of the quarter paperwork, side walk chalk, a drive to Franklin, ID, dancing to Ripkord's music, hugs from the fremilies, meeting up with Kay & Eric at Factory for dinner, extending our triple date to the movies (Great and powerful Oz), a long talk with Charity in our pjs, an awesome day at church including hearing Mark giving the Easter lesson, easter baskets filled with sugary treats, a yummy traditional dinner, an egg hunt at the Anderson's, a nap, and looking over all these pics at the love and joy!

glow-in-the-dark eggs

waiting for the egg hunt

Riah and Janessa helped the little girls find eggs

Charity and Victor

We filled the driveway with art

RipKord jammin'

Aubrie every minute of this weekend....

Love the Factory!

Nachos and peanuts

I mustache you a question

Kay, me and Charity

Movies!

Baskets of treats

Easter girls

All the Kailing girls

Me and Mark

My mom making deviled eggs and eating peeps

Dinner, yum!

Ava found an egg with a dollar inside!

Grace and Amari having fun

Emma and Riah

Loving the sunny day with friends and family :)