Sunday, April 29, 2012

a party for lily

 We decided to postpone celebrating Lily's first birthday until Wes was home from the hospital.  I had starting thinking of birthday party ideas for Lily before Wes was diagnosed.  I had a "Lily in One-derland" party in mind, with lots of fun Alice in Wonderland tea party stuff and a big fluffy Alice in Wonderland dress for Lily.  After Wes was diagnosed Lily's birthday creeped up on me and came and went.  No dress, no party, I didn't even buy her a present.  A thoughtful friend in our neighborhood made Lily a cake for her actual birthday and I was home from the hospital a bit to enjoy some time with her on her on the actual day But who needs a big party when you are one and all you want is your family at home. 
So after we brought Wes home we had a little celebration with some family over to eat cupcakes and open presents.
  I've always said this girl knows what she wants and it was very evident when it came to presents.  

While she loved opening the toys she got there were certain things she was drawn to.  One of the presents she got was a soft baby doll from the Bodines.  The minute she opened it and saw what it was she practically threw it at Grandma Bell to open it for her.  
She whined until it was out and then she hugged and loved it the rest of the night.  Don't ever take her down the baby doll aisle in a store, she almost explodes and wants to hold every single one.  
She also loved her princess car.  
She is a big fan of riding and pushing.  
It's amazing how much you just don't care with your second child eats or don't have the energy to monitor what the second child eats.  On Halle's first birthday we gave her a cupcake.  It was her first time eating cake and she hated it.  
Lily, on the other hand, knew what the cupcake was and had been dabbling in sweets for a long time and wanted it in her mouth.  She was a little confused when I set it in front of her and kept holding it out to me wanting me to put it in her mouth for her.  
She eventually realized she could do it herself and enjoyed it a bit more.
  Then she was whisked off to the bath and her birthday party ended.  
I don't feel like I get to celebrate the wonderful part of our family that she is enough. Thank you to all our family and friends who celebrated this beautiful baby and showered her with gifts and love   

Tuesday, April 17, 2012

preparation precedes power

I don't believe there is anything that truly could have prepared me for the shock we received on the day Wes was diagnosed. I knew cancer was a possibility considering his symptoms, but he was 28 and I just kept telling my brain to not even go there. Looking back, I can see a divine hand blessing me and preparing me to face this trial in the months and weeks before it all "hit the fan."

-If I could have planned things the way I wanted them to be, Lily would have been born sometime in the summer possibly July or August. Instead, she was born in early April. No big deal. Turns out this was actually a huge deal for me. After Wes was diagnosed and throughout his time spent in the hospital I was away from our children a lot. When all this started happening Lily was 11 months old and still nursing. Because she was so close to a year, her pediatrician didn't see any problem letting her go straight to whole milk a little early since I couldn't nurse her every few hours like I had been. At this age she was getting more independent and could eat other foods. Had she been born later like I had wanted I would have had to stop nursing before had I wanted to (which is a big deal to me personally) adding to my stress about leaving her all the time. What a blessing this was. One less thing for me to worry about when my life became filled with uncertainty and worry.

-During the October 2011 General Conference, Elder Richard G. Scott spoke about the scriptures. He said: The scriptures can become stalwart friends that are not limited by geography or calendar. They are always available when needed. Their use provides a foundation of truth that can be awakened by the Holy Ghost. Learning, pondering, searching, and memorizing scripture is like filling a filing cabinet with friends, values, and truths that can be called upon anytime, anywhere in the world. Great power can come from memorizing scriptures. To memorize a scripture is to forge a new friendship. It is like discovering a new individual who can help in a time of need, give inspiration and comfort, and be a source of motivation for needed change." I remember hearing him say these words and feeling them pierce my heart. I knew this was guidance for me, I felt that right away. It created a desire in me to really dig in and feast upon the word more then I had been. the promise that a scripture could be my best friend in a time of need was something I longed to achieve. On the day we found out Wes had cancer, the same scripture ran through my mind over and over and helped to keep my calm. It was Isaiah 53:4 which says: "Surely he hath borne our griefs, and carried our sorrows." The peace it brought was priceless and I knew I wasn't alone. Through Wes's second stay in the hospital another scripture kept rolling around in my head. It was Mosiah 24:15 which says: And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord. I couldn't let go of that word "cheerfully." I thought about it often. I wanted so much to endure and submit to this cheerfully and with patience. It kind of became my mantra and helped to buoy me up. My love for the scriptures and the words of the prophets has grown immensely. I know they are a constant friend through rain or shine.

-A few weeks before Wes's colonoscopy we had the opportunity to attend our in-laws stake conference where my father in-law was released from the stake presidency. Elder Neil Andersen was in attendance and was the concluding speaker. I was out in the hall with a squirmy Lily and could only catch snippets of what he was saying. I could hear he was speaking a lot about trials. Lily held still just long enough for me to stand still a catch a bit. Elder Andersen related something he had heard Elder Neal A. Maxwell say that went something like this: "if you think things are going well in your life, just you wait." Now, I don't think it was meant to make people start living in fear of the unknown or anything like that, but was meant to illustrate that trials happen to everyone. I remember the feeling I got when he said this. I would say a jolt kind of ran through me. It made me take a step back and think to myself "am i ready?" Of course, Sunday ended and I went back to worrying about what to make for dinner and silly things like that. But, when cancer rocked our world a few weeks later I remembered those words and knew that statement he made was for me and was glad to have mentally checked up on my faith through hardship that Sunday.

I am so glad to have a loving Heavenly Father who has a plan and an interest in the lives of his children. He doesn't take away our trials, but he can give us the power to endure them if we just stop and listen. We will see his divine guidance, help, and blessings if we are looking for them.

Sunday, April 15, 2012

home again

on friday i got to bring my sweetheart home on a low fat, low fiber, soft food diet.
feels so good to be reunited with our girls.
now if only lily would stop clinging to me in terror every time I try to leave a room.

Thursday, April 12, 2012

baby steps

I actually saw dust on my dinner table yesterday.
That means mommy and daddy have been gone for too long.
And we have not been a fully functioning household for way too long.
This second stay in the hospital is creeping up on two weeks now.
I thought he would recover quick and his pancreas would get better once they took everything out of his bowels.
But the cup of powerade they finally let him have after one long week of eating and drinking nothing was pure manna from heaven.
The nausea was still going strong and he was on the verge of vomiting for days and his pancreatitis numbers kept going up and up.
He was losing so much weight.
He bottomed out having lost 31 pounds.
31 pounds in 3 weeks.
Have you seen my husband? He does not have 31 pounds to lose.
They put him on a feeding tube while his bowels continued to rest.
It was getting incredibly hard to be patient and wait for his pancreas when my family felt so torn apart.
We couldn't even celebrate Lily's birthday together.
It was hard to watch Wes literally wither away in a hospital bed.
It was hard to keep coming up with encouraging words day after day.
I have never wished I could be two places at once more then I did last week.
Yesterday they put Wes on a full liquid diet.
Cream of wheat and creamed clam chowder were on the menu.
And the day passed with no nausea.
Dr. Kim came in that night and said if he keeps everything down and feels well he could possibly go home soon on a low fat diet.
All I could say was "whaaaaaaaat!?"
No one had even mentioned going home for the longest time.
Here's hoping for good things to come.
Baby steps, my friends, baby steps.

Thursday, April 5, 2012

happy birthday to lily

my how much can happen in just one year.
i watched you on the day you were born struggle to breathe and eat.
look at you now.
you are so full of life and emotion.
you know what you want and you are determined to get it.
you love: to eat (especially anything on your big sisters plate), to follow your sister around, dance to music, your dad, to make people laugh, to chase a ball around the house, your sister, and playing downstairs.
you are: sweet, smart, stubborn, and the best kisser.
you say: "hello?" everytime you pick up a phone, "all done" when you hate something, and call for "halle" in the mornings.
you can: walk on your knees, but not your feet, be a handful and delightful all in one day, and do all the actions to "wheels on the bus" it is your favorite song along with "five little monkeys."
you eat: cottage cheese (for every meal if I would let you), treats, especially love yogurt, and spit out any green vegetable.
we love it when: you fold your arms for prayers, you do the "no no no" dance, you laugh only because other people are laughing, and when you snuggle up.
you should know: that this past year has been wonderful and hard. your dad got very sick and nothing made your mom feel better about life then playing with you, watching you smile, and seeing you learn and grow. you and your sister were the greatest blessings through our biggest trial.
you should really know: this love we have for you runs deep little lily pie.

Monday, April 2, 2012

surgery and more things that aren't normal

Where to begin?

Thursday, March 22nd
Wes was put on a liquid diet to clean his bowels out in preparation for his surgery the next morning. He had already been feeling terrible from radiation and as night wore on things kept getting worse and worse. He had near constant diarrhea and unbearable abdomen pain. He finally couldn't take it anymore and we drove off to the emergency room. They gave him medication for the pain and sent him home so he could sleep for the next few hours before surgery.

Friday, March 23rd
We woke up, said goodbye to the girls, and headed off to LDS hospital.
Wes was prepped and we waited together on his bed. It really is pretty comical that his feet hang off every hospital bed.
They wheeled him and my heart into the operating room that day. The wait was excruciating. I am so glad my in laws and my dad were there to sit with me that day. The whole surgical waiting room cleared out for the day as the clock ticked on and on and person after person was reunited with their family members fresh out of the operating room. Finally a phone call came saying he was stable and they needed a few more minutes to close him up. It had been almost 6 hours. Dr. Kim came out to chat about the findings.
First, the surgery went as well as he could have hoped. He was able to go in laproscopically and snip out his whole large intestine and the two tumors. He discovered that the tumor up high was almost completely obstructing his colon (this explained the diarrhea and pain from the night before. If that tumor had grown any bigger he would have been completely obstructed and would have needed emergency surgery). How thankful we are that everyone was able to fit him in when they did.
Second, he discovered some very large lymph nodes attached to the colon that made him almost positive the cancer had spread. This actually really pleased Dr. Kim. This would hopefully be the explanation for his high cancerous blood count. They have told us over and over that it is unlikely that two tumors would cause him to have such a high blood count. They were sure it had either spread to his lymph nodes or that cancer was hiding somewhere they had not discovered. He was happy to see that these enlarged lymph nodes could explain his high blood count. This also upgraded what was initially looked like stage 2 colorectal cancer to stage 3. This also means chemotherapy is not too far off. I am actually glad. I want to just shock his body and flush everything out so I never worry about cancer lurking somewhere that chemo could have killed. I say that now right, but just wait until I watch him suffer through that. I might change my tune.
Third, he wanted to make sure he cut all of the cancer out of Wes. The rectal tumor made this complicated and he was hoping to save as much of the rectum as he could in order to hook his small intestine up to his rectum for future use. He was able to get a clean margin and leave 2.5 cm of rectum for reattachment.
Fourth, he used Wes's small intestine to make a j-pouch and connected it to his rectum. He then cut a portion of that intestine out through his abdomen to be his new set of plumbing while the j-pouch and the colon area heals.
Fifth, in order to keep the cancer from being squished and leaking everywhere in the body by pulling the colon out through the ileostomy hole he created an unexpected incision around the navel to pull the colon out cleanly.
Sixth, I asked if I could hug him and he probably thinks I am weird.
We headed up to Wes's room to wait for him to come out of recovery. They finally brought him up and his smile was like sunshine to my soul. It was wonderful to have him safely out of the operating room with most of him still intact.

Saturday, March 24th
Wes was up and about.
They encourage patients to walk around as much as possible after surgery to stop blood clots and get your systems moving again. Our nurse told us most patients make it to the door and back the first time. Not my superman. He went all the way down the hall and back.
The girls came to visit.
Lily was practically jumping out of my arms to get to Wes. Halle was very careful with Daddy and held his hand so sweetly. She was also very interested in his ostomy bag or "poop bag" as she calls it.

Sunday, March 25th
Sunday was full of visitors.The girls stopped by with my parents, Wes's family stayed for a bit, my brother and his fiance dropped by, our bishopric came, and then some special visitors showed up. Three of Wes's gaming friends came with gifts in tow.
Everyone asked about the call of duty poster they hung in his room. They actually had t-shirts made that displayed their gamer tags and the words "pwn cancer" (I am told that when you "pwn" someone in a game you kill and destroy them.)
Everyone was so sweet to look in on him that day.

Monday, March 26th
Wes began to feel better and his ostomy bag had been working and he was trying more and more soft foods. I took this picture of Wes as he was trying to get warm and told Halle it was ghost daddy
She loved it.
It seemed like he was on the mend, but he randomly kept spiking low grade fevers when they would check his vitals. They pulled out his catheter thinking he would soon pee on his own. They gave him 8 hours to let his body try. All day nothing happened. We had more great visits from extended family that day. 8 Hours passed and he was able to urinate a tiny bit if he pushed and tried really hard. He was desperate to keep that catheter from going back in. He tried to pee a lot and was eventually getting out quite a bit, but had to really try to make it come out.

Tuesday, March 27th
Abdominal pain began to increase as this day worn on. Martha the ostomy nurse came and taught me and Wes how to change his ostomy bag and how to get supplies. I have now fed him, bathed him, clothed him, cleaned his poop bag and emptied his pee bag. It is truly humbling to be taking care of my companion in this way. It is a love like no other my friends. That night Wes was in some awful pain. I felt completely helpless as I watched him suffer. He wanted more medication, but wasn't allowed more even though the pain was unbearable. He was up all night. I am ashamed to admit I fell asleep for a couple of hours while he sat up. And the little dear let me sleep on while I was oblivious to what he was feeling. I am so grateful I was so exhausted as we stayed up that night because I think it shielded me from feeling too much emotionally.

Wednesday, March 28th
We figured something was not right because his pain was getting worse. He was putting out good urine numbers, but was spending half an hour in the bathroom each time trying to pee. Dr. Kim took some blood and urine tests and saw some numbers that he thought might be an infection. Wes was sent down to radiology for a CT scan of his abdomen. As we waited in his room for the results a physicians assistant came in and said Dr. Kim was at his Salt Lake clinic, but had just sent her a text saying the catheter needed to go back in. A nurse came in and hooked it up and immediately drained 2 liters of pee! Dr. Kim explained that the CT scan showed that his bladder was so full of urine the kidneys were backing up and pushing on his bowels causing some serious pain. His bladder had never completely woken up from the surgery and was not functioning. He would need the catheter for a couple of weeks. The pathology results came back and the lymph nodes they took tested positive for cancer. We meet with an oncologist soon to discuss treatment.

Thursday, March 29th
We finally saw the light at the end of the tunnel and were told we could bring Wes home. He was feeling so much better now that his bladder was draining
Family was waiting for us when he arrived and I was so happy to be reunited with our little girls

Friday, March 30th
It was hard to adjust to home life. Wes missed the hospital bed that would help him to sit up without using his sliced up abdominal muscles. The girls were extra needy and clingy to me making it hard to take care of Wes. He was finding ways to carry around his catheter bag.Wes was up and down the stairs doing a lot, his ostomy bag was putting out pretty liquidy stuff and was starting to scare me. It just didn't seem normal. He was pale and weak and nauseous, and the on-call doctor chalked it up to doing too much, saying it was all completely normal.

Saturday, March 31st
Wes woke up with severe heart burn. We figured it was his new plumbing getting used to everything again. I called the on-call doc again and he recommended pepcid. Mom ran to the store. Soon after Wes started vomiting. We called the on-call doc again saying he had vomited and was extremely nauseous. He said it is normal and prescribed some anti nausea/digestive medication and told him to stay on clear liquids. Wes was feeling terrible. Mom ran to the store again for broth and medication. He vomited again. I called the on-call doc again saying he had vomited again and his ostomy bag was putting out blood and pure liquid. He again said it was normal and to just give him powerade. I helped Wes get into the shower and he vomited again. I was over it and said we were going to the ER. He continued to vomit at the ER and a CT scan was ordered. The results were that his small intestine was not working and was five times the size it should have been. His food was not digesting and he had gotten so full he was backing up and vomiting. He needed a tube down his nose to suck out everything and decompress his bowels back to their normal side. They whisked him off in an ambulance up to LDS hospital. It was an image I never thought I would witness. I followed the ambulance and held his hand as he they put a tube down his nose and throat into his stomach. He looked awful and exhausted and kept throwing up. My heart hurt so bad that night to see him so pale, thin, and tired.I felt I had hit rock bottom two nights before as I watched him retch over and over and all I could do was sit and watch. I didn't know if my heart could take anything more. Watching Wes hooked up to so many machines was almost too much to handle.
It was the first time I have wanted to mentally check out since his diagnosis and just not feel anymore. There was way too much feeling going on.

Sunday, April 1st
Another sleepless night full of pain and frustration as he got used to the tube down his throat. He was absolutely miserable, but seemed to improve throughout the day. He seemed to sleep well that night.

Monday, April 2nd
The morning brought Dr. Kim.
I was so glad we had him back and no more on-call doctor. That man is like sunshine every time he walks through the door. He gets things done and just seems to know what to do. He looked at the labs they took and saw he had pancreatitis, something my dad had suspected Wes had since Saturday. They believe this has paralyzed his intestines and food has not been digesting but simply building up and building up until it had nowhere to go but back out. At this point there is not much they can do, but continue to pump him out and wait for the pancreas to calm down. The problem is Wes has not eaten in three days and can not eat or drink while that tube is down his throat. He is already skin and bones and if the fluid they are pulling out of him doesn't slow down soon he will have to be put on IV nutrition, something we do not want. Say a prayer for my love and hold your own sweethearts a little bit tighter tonight for me. They are so very very precious, I hope you never forget that.

And that concludes the very, very basics of what is going on since surgery. I don't even know if I have all my facts right. All the days and information just seem to be blurring together. There is so much I want to talk about: nurses and doctors (this boy is seriously loved around that hospital. Dr. Kim told me the anesthesologists fell in love with Wes before the surgery and told him not to screw this one up. We also have nurses not even taking care of him that day that have taken care of him before stop in when their shift is over to see how he is doing), help we've been given, the prepartion I believe I received for this trial, visits, general conference (was it just me or did this conference seem made for me and my family?), my sweet girls (lily's birthday is this week!), the way my girls make me laugh, how halle is blessing her daddy all the time because she knows she can talk to Heavenly Father about it, and the funny things my husband does despite this huge burden placed on his shoulders. There is so much turmoil and pain and worry going on, but surpassing it all is the good. There is so much good. All around, in people and in this world. I hope to always see that.