Thursday, June 18, 2009


It has been quite awhile since my last update. Here goes....

First and foremost, Tyler is doing well. We still have our challenges, especially during "roid rage." But, for the most part, we are holding steady. He continues to amaze us each day with his strength and perseverance. He had clinic last week and he did great. His counts have been pretty typical, no real alarm bells. We just pray each day that this will continue and that we can get through the next ten months without any major issues.

I stay very positive for the most part. But then I will hear about another child who has relapsed and it freaks me out. I try hard not to imagine what that would mean in our own lives. But cancer is not predictable. All we can do is live day to day, be thankful for each moment we get, pray and fight!

In other news.....Nathaniel had his rectal biopsies done and, thank goodness, it does not appear that he has Hirschsprung's disease. He did show ganglion cells in his tissue samples. This is both an answer to prayers and frustrating because we are back at the beginning. Don't get me wrong; I am VERY thankful that he does not have to have surgery or a colostomy. I just wish we had some more definate answers. However, we both trust his doctor and know that he will help us get through this. For now the plan is to increase his dose of Miralax and begin adding additional medications to help ease his constipation. If this doesn't help, we will explore some other options. Dr. Rossi thinks that because he was a micro-preemie, he may just need continued time to grow and he may grow out of this phase. We certainly hope that is the case.

Emmalee, Nathaniel and I got back from our trip last Monday. Please let apologize to all of our friends and family in Utah. We literally had less than 24 hours in Salt Lake. We drove straight from the airport to Elko when we arrived, drove straight through to Wyoming the next weekend and then spent less than 12 hours in the hotel before we flew home. I am so sad that we didn't get to see all of you! I guess this means we'll just have to come out again....or you'll have to come and visit us!!

We had a great time, minus the fact that the kids were sick for a few days. They both ended up with a nasty stomach virus and then poor Emmalee got a urinary tract infection. Not fun. As Emma said, "you're not apposed to get sick on cation." So true!

The rest of our trip was a lot of fun. My oldest niece graduated from high school. I'm still not sure if I believe it or not. Where did the time go? It was a blessing to be there and spend time with my family. I can't believe how much I missed them! It is very hard to live so far away.

We spent the second week of our trip in Wyoming, spending time with my dad and my grandma. My grandma has Alzheimer's and her memory is really starting to deteriorate. I am so thankful that I had time with her! She is one of the kindest, most loving people I have ever known. It was just incredible to be home with her and have that time together.

On our way back to the airport we stopped and spent time with my aunt, uncle and cousins. That was so much fun! I just wish we had more time together.

I think Emmalee's favorite parts of our trip were spending time with her cousins and following my dad around like a puppy. She had so much fun! She tells me every day how much she misses everyone and wishes we could see them. I agree!

Tyler did alright while I was gone. Brent said he asked for me quite often. I expected him to be thrilled to see me when we got back. He wasn't, at least not at first. It took him several hours to really pay attention to me and a couple of days for him to get over being mad at me. Poor kiddo. As much as I enjoyed my trip, I don't think I will ever be able to leave him for that long again. Thankfully he had his daddy home with him during the evenings and weekends and our amazing friend Hannah with him while Brent worked.

I have a million pictures to get posted but that will have to wait for another day. :)

All in all things are going well. Thank you to everyone for your love, prayers and support. It is because of you that we make it through this fight every day. We love you all!


Lilly said...

Hey, this is Lilly (Iden) I was reading your blog and i was just wondering what you are feeding your son with the bowel issue. please email me at

diana said...

So glad you were able to see friends & family. I can't believe how fast everyone grows up! I still think of your nieces as little girls, like when we lived in your sister's basement!

We are glad that Nathaniel doesn't have Hirshsprungs but keep you in our thoughts that his stomach stuff will resolve.

You are such a good person and great family! Hoping for some better times for you guys!

Tricia said...

How about your Wyo Friend? You weren't too far from me - I think. I'm so glad it went well. Isn't Wyo beautiful in the summer? Well, we finally have summer, I think. HOpe things keep looking up for the family.

Julie said...

I am glad things are going well. Hope you get some answers about Nate soon. My fav part of this post was Emma's quote about not pposed to get sick on cation.