Monday, September 8, 2014

September is Childhood Cancer Awareness Month

It was pouring rain when I drove home from work last night. Usually I hate driving in the dark and the rain, but without other cars on the road it was easy to see where I was going and the reflections on the road were quite beautiful.

Owen and I go back to LA this week. I ran through all of the scary, possible scenarios in my head as I worked last night. I’m not sure that it’s a healthy habit, but I like to go into every appointment thinking about how I’ll handle different kinds of news.

This will be Owen’s sixteenth time going under general anesthesia.

September is Childhood Cancer Awareness month. Last year we were newly diagnosed and weren’t in a position to really think about raising awareness. This year I’ve been trying to spread awareness and thinking of ways to help. I think sometimes people don’t want to think about childhood cancer because it’s hard. It’s hard to read stories and statistics and learn that not every child survives. It’s hard to see a child go through treatments. It’s a hard subject, but turning away isn’t going to help it improve. We need more research and treatment options.

I’ve been looking at different organizations and I’ve decided to donate to CureSearch. They focus on research and clinical trials and I really believe that is where the money is needed most. Next week I’m going to start a fundraising campaign for them through my business as an Independent Scentsy Consultant. If you’re interested, check back here next week and I’ll post the link. If you want to donate to CureSearch directly follow this link and donate to the Salt Lake City 2014 CureSearch Walk. CureSearch supports Children’s Hospital Los Angeles, Huntsman Cancer Institute, and University of Utah (and a bunch of others, but those are our hospitals so they’re worth noting here).

This week when we’re in LA, I’m going to focus on spreading awareness with pictures via Instagram and Facebook. I don’t always share the tougher photos, but I think I need to be more transparent about our experiences.

My prayers are with every child fighting cancer and to the families of those that cancer has taken.

Monday, August 25, 2014

I haven’t written for a while... a long while. I think my last post dates right after our last round of chemo. The truth is that I haven’t written because I’ve had so many things on my mind and I’m not always sure how to voice them or if they need voicing at all.

I started my job at the hospital and I love it. love. love. love. Especially working in the ER (where I’ve been the past two nights). It’s exciting. I get to clean up some messy messes, which are my favorite. I get to be super busy and rushing all night, which makes the time rush by. Mostly I am just happy to be working. I work weekend nights, so I don’t feel like I miss out on much family time (most of the time that I’m at work, J&O are asleep). J gets some great one on one time with Owe-bug while I’m gone and I’m already seeing it make a difference in how big of a mama’s boy O is. I want him to realize that both of his parents adore and take care of him and I think having Daddy as the solo parent three nights a week is really helping. Mostly I just feel good. I didn’t realize how much I needed to have something away from home. I feel better about myself, I feel more accomplished, and overall I just feel happier.

I struggle this time of year, every year it seems, since the twins died. It seems like once August hits, it’s a whirlwind of I&P anniversaries. I’m already struggling with the birthday. November is months away but it feels like it’s looming over me already. I might just crawl under my covers that day and pretend the world doesn’t exist.

Working at the hospital has forced me to acknowledge some of my experiences and deal with how I feel about certain things and areas. The first day I realized that the EVS office is around the corner from the morgue, when I turned the corner and saw it- that room where they took my babies after we said goodbye- I wanted to cry. I wanted to turn around and go back to my car. But I didn’t. I stuck it out and now when I turn the corner, it doesn’t even bother me. I didn’t realize I would have such strong feelings about specific areas of the hospital. I had the same reaction when we went to the NICU. I&P never made it to the NICU, so I didn’t think I’d associate it with them, but seeing those itty bitty babies just brought it all back to me. The rush of that morning, the NICU team being called, my premies that never made it that far. Every time I hear something or find another place that gives me flashbacks, I feel like I’m climbing the mountain. I’m acknowledging my feelings and I’m working through them. I’m trying very, very hard to heal.

Owen’s last EUA went very well. There was no active tumor, so we will stop chemo for now. In three weeks, he’ll have another EUA and we’ll see what’s going on. Like always, he handled it like a champ. No melt downs, 22+ hours in the car, and two nights sleeping on a bed with me (I forgot the pack n play). He’s awesome.

Overall, we’ve all been good. We’ve been busy, but I think most of it is getting into a routine. The past two weeks weren’t our “normal” schedule, but now that we’re on track we should be able to get into the groove of things.

Friday, August 8, 2014

Just got internet after a week without. I can’t believe how much I rely on the internet! I was so stuck... I actually had to go to a real store to buy the things on my shopping list (the horror!)

In that past week (and a half) this is what we’ve been up to-

1. Owen completed his second round of chemo.
2. We went camping with my family in Ferron, Utah (where my grandma grew up).
3. We moved.
4. I got a job.
5. I signed up to be a Scentsy Independent Consultant.

Owen has struggled a lot this week from the affects of chemo. Lots of nausea meds, snuggles, and pain medication as needed. He’s been waking up in the night more than he did as a newborn. The last few days we’ve seen huge improvement, so we’re hoping we’re on the downhill of the nasty side effects. We return to LA the week after next to see how his tumor is responding. Chemotherapy itself went okay. The first day I was alone and it was very, very difficult. I had called ahead and asked if I could take Owen out of clinic hooked up to the IV, but I had failed to ask about the chemo drugs specifically. I didn’t find out until we were in clinic, that he couldn’t leave with the chemo drugs. Which makes sense, but it grounded us for the day. Me with too little caffeine and him in a room that didn’t keep him entertained for very long. Fortunately there are lots of fun toys in clinic and we had the iPad, but it was a tough day. The next day my mom was able to come with us (hallelujah) but they struggled with Owen’s IVs. He ended up having three different IVs put in before the day was over. We were all very tired by the time we got home.

Camping was a much needed get-away for us. We went down to Ferron, where my grandma grew up and had a great time hanging out as a family. We went hunting for round rocks, swam at the lake, and saw the pageant.

I’m very excited about my new job and about being a consultant for Scentsy. It was hard this week to complete all of the pre-employment stuff for my job and get ready for my Scentsy launch party sans internet, but I’m back up and running now and ready to get going with both endeavors. My job is part-time and nights, so I’ll still be able to take care of Owen and be with him for his doctor’s appointments and treatments. I am excited to do something outside of the house that will help our family financially. I’m super excited to have TWO new jobs. Scentsy is something I’ve loved for a long time, I’m thrilled to start sharing that with other people.

We go back to LA the week after next. Until then Owen has ZERO appointments :) Since his numbers have always done so well, he doesn’t have to have any blood draws unless we start another round of chemo after LA. Being able to stay home during his bad days has been really nice. I’ve spent a lot of time just holding him. It’s made un-packing go really slowly, but chemo pain and nausea wins over un-packing responsibilities. Plus there are a lot worse places I could be than cuddling my sweet O.

Friday, July 25, 2014

I’m sorry it’s been so long since I’ve updated. We went for our monthly exam in LA and our doctor found that Owen’s tumor is responding very well to chemo (YAY!). So well, in fact, that Owen might be done with chemo after this next cycle. We won’t know for sure until we return to LA in August, but it’s a possibility.

Owen is having another round of chemotherapy this week (Tuesday and Wednesday). I’ve been fortunate that up to this point, I’ve always had someone to go with me on chemo day(s). That won’t be the case this week, so I’d appreciate some extra juju that everything goes smoothly :)

I’ve been feeling really good the past few weeks. I wrote about it briefly, but I’ve had some times in the past month where I’ve been really down about the twins. It’s normal for grief to hit me harder at some times than others, but it’s exhausting when it does. I’ve been packing (we’re moving soon) and as I’ve gone through things, I’ve had some break-down moments when I unexpectedly found a card given to us after their death, scrapbooks I compiled, etc. I think allowing myself to break down has helped me overall though. After crying, I feel more refreshed and able to move on with my day unburdened. I’m going to work on allowing myself to feel what I’m feeling in the moment and not feeling guilty about it.

I’m also working on being less stressed in general. I have two mottos right now, “I have bigger things to worry about.” and “it is what it is.” I’m trying to have perspective as I go about my day. I’m also trying to be more positive about myself. I find that some days I think about myself as a “bad mother” or “bad wife” because I didn’t accomplish all I wanted to accomplish, because I didn’t wake up on time to make a hot breakfast, because Owen watched too much Sesame Street, etc. But I think giving myself those messages does more harm than good. The important thing is that I’m trying. Some extra Sesame Street on a day that I’m fried and trying to get housework done isn’t going to hurt Owen. Likewise, Jacob having toast or a bagel for breakfast one morning isn’t going to make him have a bad day. It’s all about balance and doing whatever we need to do to get us all to the end of the day happy, loved, and well cared for.

I’ve noticed as I feed myself these positive messages, I’m happier. I’m becoming more and more content with my life. I’m enjoying the time with my family more. And I’m worrying less about things that really don’t matter that much.

Thursday, July 10, 2014

I was cleaning out our closet. Trying to de-junk and add to the “yard sale” pile. I pulled down the box of Isaac and Porter’s things and for the first time since we moved last year, I opened it up. As I pulled out their blankets, the journal I’d written to them while I was pregnant, the molds of Isaac’s hands and feet, and the photographs I wanted to bawl. I wanted to curl up in a heap on the floor and sob or scream at the universe for taking away my babies. 

But I didn’t. I packed everything back up. More quickly than I’d intended to and put the box away. It’s just too hard to look at it. I have framed pictures of I&P. Pictures that were hanging on our wall in our last apartment. Pictures I planned to hang along side the pictures of our living children (at that time I planned on having more than one living child). Now? I’m not sure I can do it. When we move, I may just hang a picture of the three of us and call it good. I’m not sure I can emotionally handle seeing I&P’s pictures every day.

I never thought I would feel that way. That’d it’d be harder to see their pictures than to not.

Grief is such an interesting monster. It has taken on so many forms in the past 2 1/2 years. I’ve had times when I was happy and was surprised. And I’ve had times when I’ve struggled and that surprised me too. It’s an ever consuming roller coaster of emotions. 

Not long after I’d put the box back, Owen woke up from his nap. His sweet smile and insistence on bringing his blankie and pacifier downstairs cheered up my heart. He’s so good. Even when he’s not feeling well (chemo is hitting him), he makes me laugh.

Sunday, July 6, 2014


My mom watched Owen this morning so that Jacob and I could go to Sacrament Meeting. We haven’t been in a few weeks and I didn’t realize how much I missed it until I was sitting in the meeting. Today is the first Sunday of the month, so it’s fast and testimony meeting. Members get up and bear their testimonies of Christ, of the gospel, etc. It was a spirit filled meeting and I desperately needed it today.

It made me think about ways that I can bring the spirit into our home more. Ways I can build my testimony. Ways I can draw closer to my Savior and my Heavenly Father.

Attend the temple. My recommend is expired and I’ve been lazy in getting it renewed. I’m making it a goal to set up the appointments and get that taken care of this week. I’m also making it a goal to attend the temple. Even if we have to take turns so one of us can stay with Owen.

More church audio. I like to have noise during the day. Owen and I often listen to music or audio books. I am going to put on church music more often- hymns and songs from the Children’s Song Book, and the book of mormon as audio. Church music especially has the power to bring the spirit into our home and it tends to make me happier and more at peace.

Read my scriptures more. This is something I simply need to do. Reading the scriptures on a regular basis helps me to be guided and more at peace with my circumstances. I need to sit and read more and turn off all of the distractions when I do.

Those are my three goals. I think following them will help me and our family have the spirit more. I’m so grateful for our families. Without their help, we would not be able to come through things unscathed. We are so very blessed.

Friday, July 4, 2014


It was a review on Amazon. I was looking at different dolls. Someday I want to get Owen a doll that is anatomically correct and a boy (he already has a girl doll). I always read the reviews. It’s the fastest way to find out if it’s a product I’m interested in or not. Usually they’re super helpful. Sometimes people are dumb (especially about toys that anatomically correct). Today I read a review that talked about the size of the doll (14 inches) and said that a premie that size wouldn’t look “real” because they’d be too young.

A 14 inch baby wouldn’t look real?

Isaac was 14 inches.

Isaac was a gorgeous, 14 inch, 1 lb 14 oz. baby.

My perfect, beautiful, baby.

He was real.

After reading the review. I went to my iPhoto and flipped through the pictures of that day…

The worst day of my life.

I wish it was different. I’ve faced some hard things. I’m facing some hard things. But if I could change one, Isaac and Porter would be here. I miss them desperately. Most of the time I push those feelings aside, to the back of my mind. I don’t face them on a regular basis because they hurt too much. When I actually sit down and think about the fact that two of my children are dead, I want to die too. Those feelings are exhausting and sad. They hurt. The fact that they are dead, really really hurts. I miss them.

It’s a stupid little thing, but the fact that the commenter said a premie that size wouldn’t look real pissed me off.

I miss my boys.