Saturday, May 26, 2012

halle and lily

 these girls really do love each other

 yes this happened

Somehow the people at fotofly can get my Halle to smile her natural smile and laugh uncontrollably.  I love their new outdoor location at thanksgiving point.  I had scheduled this appointment for Lily's one year old pictures when I thought Wes would be out of the hospital, but it turned out he was still there and wanted me to go ahead and have the girls' pictures taken anyway.  Lily is just over one year old and Halle is three years old soon to be turning four. The girls started out so happy, but as time worn on Lily got angrier and angrier and more and more uncooperative until she finally melted down, which is when we decided to stop.  There is just something about barefoot little girls.
Our sweet friend and neighbor Natalie made the girls' headbands because I didn't have a moment to hop over to the mall and pick some out.  They were perfect.  
These pictures remind me of the joy these girls brought to us during some dark times.  I am so happy Wes encouraged me to get them done.

Wednesday, May 23, 2012

chemo faq's

We have reached the next big treatment milestone and chemotherapy has begun.  Wes had his first treatment a few weeks ago.  I was preparing for the worst and was expecting a week full of his head in the toilet.  I was pleasantly surprised to find his symptoms were manageable.  I didn't realize the hard part was making sure his white blood cell count was high enough each time to make sure he can get his next dose safely.  We were sent home a couple of days ago for this very reason.  
Each time we go to the cancer center they access his port and draw some blood to check his levels.  Every time we have been to the infusion center it has been packed.  Cancer patients are everywhere hooked up to toxic drugs.  Some with no hair, some young, but most are old and slightly angry.  If his blood levels are fine they go ahead and mix his special chemo concoction.  I had no idea there were so many types of chemo and so many combinations that could be used.  Wes's treatment and side effects are different and specific to the kind of chemo that he gets for his type of cancer.  

Does he have a port? How does he get chemo?
Wes had a port placed near his collar bone the day before his first treatment.  It is placed under his skin and threaded through his vein close to his heart.  Chemotherapy is very hard on veins and they have found that the bigger ones close to the heart handle it better.  It looks like a large bug bulging under his skin.  Each time he goes for treatment he can rub numbing creaming on it so it isn't as painful when they access it with a needle.  
Some people can get chemo through a pill, but for Wes's cancer it has to come through an IV. 

How often does he have treatment?
Every two weeks Wes has to go to the cancer center where they pump him full of anti-nausea medication and then one type of drug for about 3 hours.  A nurse will then attach a pump containing another chemo drug that he brings home and will continue to pump into him for the next two days.  After two days he goes back and they remove the pump.  He will get twelve of these treatments which means he will be doing this for the next six months.

What symptoms will he have?  
Part of Wes's drugs contain something called oxaliplatin.  This drug has certain side affects that are a little different than any chemo side affects I have heard of.  Oxaliplatin makes it hard to touch or drink cold things.  We are told when you try to drink something cold it feels like you are drinking shards of glass.  Wes is honestly the most proactive patient I have seen and has been practicing drinking luke warm drinks for weeks.  When you touch something cold, even putting your hand in the refrigerator it can shock you.  As you get more and more of this drug your fingers and toes begin to go numb and tingle.  If the tingling and numbness doesn't go away after a few days they sometimes have to stop giving this drug early.  They try to get at least 6 treatments of this kind in you before they consider stopping it.  
Loss of appetite is a big deal for us.  Wes is so thin that when he tells me nothing sounds good and he will throw up if he eats it gives me anxiety.  He lost a few pounds his last treatment because he didn't want to eat anything for 2 or 3 days.  
The chemo in his at home pump makes him very tired and he sleeps a lot for a couple of days.
Diarrhea is another big side affect that worries us.  The large intestine absorbs a lot of the water that we drink.  When they removed his large intestine his body had no way of absorbing water so dehydration is always a concern.  He has to really watch his fluids and make sure he is getting enough to keep his body hydrated.  The chemo drugs cause diarrhea.  This is especially concerning because of his ileostomy. He is more susceptible to dehydration, add diarrhea to that and he is hardly absorbing any water.  Luckily he is determined to take care of himself and makes himself drink even when he isn't feeling well.  The cancer center also has an infusion floor that they can hook him up to fluids any time if he is feeling dehydrated.

Will he lose his hair?
The silver lining is he will not lose his hair!

What about nausea and vomiting?
Cancer centers have become better at managing nausea.  The nurse was telling us that even five years ago they would hook cancer patients up to their drugs and hand them a bag to vomit in.  For half an hour they are pumping Wes full of anti nausea medication.  This will stay in his system for the first 48 to 72 hours after they have accessed his port.  This seemed to manage his nausea and he didn't vomit at all the first few days.  As the IV drugs wore off the nausea was pretty intense, but he was given some prescriptions that manage it pretty well.  He only threw up once during this first treatment.  Crossing my fingers that we can continue to keep this under control.

How does it make him feel?
Like I said, I was pleasantly surprised the first treatment because he seemed to handle it well.  He took medication when he felt nauseous and was a little tired.  Chemotherapy supposedly has an accumulative affect and he may feel worse and worse as the treatments continue.  He feels the affects of everything for about a week and then he slowly starts to recover the second week just to feel well enough to do it all over again.  He can't do much but lay around and try to feel better.  I just tell myself over and over that it is busy season and to get in busy season mindset when it comes to taking care of the girls and the house.  Except this doesn't end on the weekends or at the end of March, and oh yeah it is way more stressful when you're worried about your husband's health on top of everything. 

Can he go out in public?
Chemotherapy kills the fastest growing cells in your body.  When you have cancer, those are the fastest growing cells and chemo will kill those.  However, chemo can not distinguish between cancer cells and healthy cells, so it will also kill healthy fast growing cells.  These happen to be the white blood cells, the cells that make up your immune system and attack infections.  So chemo basically kills cancer and his immune system.  This is why it is scary for chemo patients to get sick.  Their bodies just don't have the equipment it needs to fight off seemingly harmless germs. We try to keep him at home as much as possible.  He doesn't share food with the girls anymore.  He sanitizes.  He is allowed to go to church if he comes late and leaves early so no one comes up to him trying to shake his hand.  We were told wearing a mask could make things worse as it traps in germs, so it it best to just stay out of public places if you can avoid them.  He will definitely not miss important events.  Chemo couldn't stop him from seeing Halle in her ballet recital!

All I know is, if the chemo is going to do all that to his body and life it better be killing that darn cancer!

Wednesday, May 16, 2012

miss utah usa

i married into an amazing family.
i'm sure you already knew that.
my sister in law is the reigning miss utah usa.
i have seen first hand what it took for her to get herself here.  
she earned this title through hard work and determination, not to mention she's gorgeous.
one of halle's favorite things to do is pretend she is kendyl.
where do you think she has learned all her great poses from?
you want to know a little more about miss utah usa? watch a video here.
she is getting ready for the miss usa pageant in vegas on june 3rd.  
you can help.  
america can vote for one contestant to automatically compete in the semi-finals.
you can vote for miss utah usa here.
ten times a day per email until the day of the pageant.  
go ken!
"catch your dream!" (does anybody else watch parks and rec?)

Sunday, May 13, 2012


mother's day dawn patrol with lily pie and a sleeping kikster
I did a lot of mothering today.  I wiped faces and changed diapers.  I held crying children and fed them food.  I rocked a baby to sleep.  I dressed them, combed hair, and took them to church.  I read books and picked up binkies and goldfish and whatever else fell on the floor.  I kissed cheeks and snuggled my girls.  Very fitting for mother's day right?  
I came home from church to find my sick and nauseous husband had cleaned my house.  It took him a long time and he had to stop a lot, but he did it.  Halle sang to me at church today.  She drew me a picture and filled a giant mother's day card full of her gibberish letters and her name over and over.  Wes took a video of her telling him what her card says so I would know what she wrote.  It mostly said she just wanted to play candyland with me.  Lily even scribbled a bit.  Wes got me flowers with the help of his mom and wrote a card that touched my heartstrings and will be something I think I will read often when I'm feeling down.  And he threw in a little jcrew.  He knows me too well. Needless to say, I felt very loved.  
My mother heart worried a lot today.  I worried about Lily's growth.  She had an infection just before Wes was diagnosed.  Her weight plummeted and since his diagnosis her height has plateaued.  Her growth charts are sobering things to look at.  I can't tell if her growth stopped because of the infection or the huge change in our home, they both happened about the same time.  I worried about the kids that are unkind to Halle and how it hurts her little feelings.  I worried about my girls' addiction to all things chocolate and that stubborn Lily has a hard time eating anything that is not cottage cheese or chocolate. I worried about Wes and how sick he is and will continue to be for the next six months. I worried about the piece of chalk Lily ate and the bump she got on her head after she took a tumble today. I worried a lot about the word "normal." I just want my children to feel normal.  I don't want Halle to worry about me going to the hospital wondering who will be watching her.  I don't want her praying for chemo to kill cancer, words I haven't even talked with her about, but she has somehow picked up on. I don't want Lily to be scared I am going to leave every time I turn my back on her.   I worried about doing it all and stretching myself too thin.  I worried about being the mother I want to be.  I can't be in two places at once.  I can't be the mother I want to be right now.  But I have faith my family will be taken care of.  And then I thought about all the women who have mothered my children while I am being what I need to be for Wes.  I thought of the sweet neighbors who dropped off goodies, bubbles, chalk, and little toys in the days after Wes was diagnosed and how it lightened my heart to see my children laughing and playing, oblivious to all that had happened.  I thought of friends who sent packages from afar filled with treats and toys and how Halle thinks every box that comes in the mail is for her now.  I thought of our own mothers who have had to slip so easily from the role of grandmother to the role of mother while we are away.  I thought of the cousins and siblings and aunts and uncles who set up a schedule so Wes was never alone and so the girls were never alone when mom left and Wes's family went out of town during his last week in the hospital.  I thought of how they felt so loved at each house they were shuttled to that week.  I thought of the friends who have mothered Halle and their own children as they invite her over for play dates.  I thought of the mother who was pregnant with her second set of twins and yet emailed me each week asking to have Halle over.  I thought of my cousin expecting her first baby who used her day off to come watch my girls while I got things done around the house. I thought of the mother also expecting a baby who cleaned up Halle's diarrhea accident she had at their house without even blinking an eye and sent her home in Rapunzel undies Halle thought were magical. (why are all the pregnant people helping me?)  Halle had about a week where she had a couple of potty accidents at other people's homes.  I don't know if it was anxiety or not knowing where the bathroom was, but each time I know it was handled with love and without shame. I thought about the friend who made lily a birthday cake and the friend who made a special delivery from the birthday fairy. There were so many examples of others stepping in and taking care of my motherly duties.  It lifted my heart to remember that we are not forgotten.  Heaven will provide for my children if I have the faith in my abilities to do all I can and the courage to then let others step in when I can do no more.
So today I am grateful to every single woman with that beautiful mother heart.  Some of you are not married and some of you don't have children of your own, but you have used that God given gift of being a mother to mother my children.  And so even though I can't be the mother I want to be at this moment in my life, I am not worried.  For I have seen all of you stand with me and lovingly mother my children when I can not.  You are truly doing the work of angels and I can't express how grateful I am. Happy Mother's Day to all of you wonderful women.

Wednesday, May 9, 2012

a sprinkle of happiness

These days I love a bit of good news. I love that life goes on and good things continue to happen to our family and friends around us.  It brings me so much joy to be able to celebrate other people.  My brother's wedding has been one of those happy events I have looked forward to for awhile now.  A definite bright spot among all the clouds.  And I couldn't have been happier with the girl he chose to be with for eternity.  I knew she was a wonderful girl when he was dating her, but it really sealed the deal for me when they showed up the day after Wes was diagnosed.  Haley and Ryan came, scooped up our children, and played with them all night while Wes and I just tried to keep our heads above water.  They'll never know how much that meant to me that day to see my girls laughing and enjoying themselves.  
They were married in San Antonio on May 5th.  Wes started to feel well enough that he thought he might be able to make the trip with us.  I was thrilled.  He purchased a ticket and some insurance just in case.  We flew out Friday morning and met up with my family on the flight.  We settled in to San Antonio and my parents and I went to Haley's endowment session at the San Antonio temple.  I was in awe of that temple.  The windows are covered in beautiful stained glass.  It really is gorgeous.  Wes went to the movies with my cousins and my aunt and uncle watched our girls.
The next morning we were up early getting ready for the wedding.  Their sealing was beautiful and Wes actually said, "they look so cute" and then told me they must really be a perfect fit because that is a big deal for him to use that word without me prompting it.  I loved holding my companion's hand and telling my brother how proud I was of him and hugging my new sister in that beautiful room in the temple.  
We had a lovely luncheon at a restaurant in San Antonio and then rested for a bit that afternoon.  We drove out to Austin for their reception.  Halle fell asleep on the way there.  
Their reception was held at an art museum in downtown Austin.  The food, the atmosphere, the music were all fantastic. 
I love watching people be in love.  They cut cake, they danced, and my sweet little Halle caught the bouquet.  
It made her day. 
 We said good bye with bubbles and sent the new Mr. and Mrs. Nimer on their way.  Exhausted, we headed home and crashed for the night.  
The next morning we had a few hours before our afternoon flight so we headed out to see downtown San Antonio.  In the middle of it all is something called the riverwalk.
 The San Antonio river flows through the city and they have created circle of river that is lined with restaurants, hotels, and shops.  We all took a boat ride around the riverwalk. 
 Halle thought it would be like the jungle cruise at Disneyland and wondered what animals we would see.  It was a great little area that I would have loved to spend more time in and enjoy the different types of food.  Next we walked down to the Alamo.  We came, we saw, we walked through, and were done.  
It's a bit smaller then I imagined.  Dad had tracked down a diners drive ins and dives cafe in San Antonio that we all wanted to try.  The mile high onion rings were delicious, but the place definitely fit under the dive category.  We got on the plane and headed home.  Wes was tired, but the trip had been manageable.  Our girls were well behaved and had so much fun with their cousins.  It was a beautiful little bright spot and a sense of normalcy before chemotherapy began.