A Bone Marrow Donor Saves 2 Little Lives

This story is amazing. For several reasons to me. First - I have known Xander (the dad) and his family for many years. Second - I have an obvious interest in bone marrow tranplant and their donors thanks to our experience with this process. Third - I have enjoyed watching NBC's program "Who Do You Think You Are?" I love family history connections and the joy that comes to these people to learn more about their ancestors. Turns out BYU TV is doing something very similar - and maybe even better. It's called "The Generations Project."

So watch this... It was worth the 45 minutes to me. And I needed a tissue. It is the story of Xander and Carrie and their twin boys who were born with a fatal genetic problem. The only hope for these baby boys was to have a bone marrow transplant. And they needed a donor. Watch what happens.


I am so grateful to Kenyon's brother, Brett, for being a willing donor. It saves lives. So many people do not have the benefit of many siblings to choose from. The National Marrow Donor Program matches donors with those in need. If you are interested in joining the registry - it is easy. Check it out here. And if you are ever the match for someone - it is't that bad and it will be a miracle for someone.

PS - I love your comments for my giveaway. You have a another day and half so keep them coming!

Relay For Life - This Friday night!!

Be there or Be Square!

It is a great event to raise money for the American Cancer Society. It is a relay event that goes all night long - showing cancer that we never stop fighting. And we will Beat It. And because of that we named our team - Team Beat It.

It is Friday, July 9th from 6pm to 8am the next morning. From 6 pm - 10pm there will be booths, activities for kids, entertainment, hot dogs, popcorn, treats, etc. It is a great evening for the whole family and promises to be even better than last year. We will be selling our popular foam swords. The kids love them.

Location: Monarch Meadows Park  in Herriman (13600 South and 4800 West).

We will have members of our team walking or running laps around the event all night long.

The track will be lit by luminaria bags. Those bags are for sale ($10 each). It is a great way to make a donation to the ACN and you can request that we put the name of someone you know that is fighting or surviving cancer. Let me know if you would like one.

We hope to see you there!

Relay for Life

> What a great event! Thanks to all who were on Team Kenyon, who donated money, or who came Friday night and supported us. A big thanks to the Jamieson's who put in so much time to making the event happen and to Angie, our team captain. We had the best team and next year is going to be even better. The event began with a flag ceremony and tribute to the survivors. The survivors carried flags and did the first lap around the track alone. Then the caregivers joined them for the second lap. And for the third lap, everyone was invited to walk in support of those fighting cancer.

Teague and Jake (he was diagnosed with Leukemia a year ago).

Each team had a booth to raise more money for ACS. We sold light sabers (made out of pool noodles and pvc) and marshmellow guns. It was a hit! We sold out fast and raised a lot of great money to fight this stupid disease.

Next year promises to be even better!!

Relay for Life

The American Cancer Society sponsors Relay for Life events in towns throughout the country. It is an opportunity to bring people together to celebrate survivors and those fighting cancer. Our friends the Jamiesons decided to get involved and start Relay for Life in Riverton. It the first year. Their little boy, Jake, was diagnosed with leukemia last year. They have been such great examples to us. It has been a tough battle but Jake is doing so well.

The event is held throughout the night - August 7-8th at Riverton High School. Please check out our team page. The money raised helps the American Cancer Society.

You can check out Relay For Life events in your own area.

Start your own team.

Donate (to anyone on our team).

Donate for a lumanaria.

Join our team.

Or just come that night. There will be booths and some entertainment. And you can cheer on those participating.

**Another event coming up on October 2nd is Light The Night. This event takes place at Sugar House park. It is specifically for the Leukemia and Lymphoma Society. It is a 2 mile walk celebrating those fighting blood cancers and honoring those who have died. The money goes to great research helping people like Kenyon. The LLS has been very good to us and we are so greatful for all they do. Feel free to join us that night as well. I will get a team together for that event as well.

Rex Lee Memorial Run

I did it! I have NEVER run a race, but today I completed my first 5K. I didn't run the whole way but I sure gave it my all. I can sort of see how this could be addicting. I definitely want to do it again so I can improve my time. I would really love to be able to run the whole way.

Egan and Kristine joined me in the run (aren't they cute?)- and they DID run the whole way. Egan did the 10K and beat me. We all ran in honor of Kenyon. It was so cool to run for cancer research with so many other people. I also loved running around BYU campus. It brought back lots of good memories. The only thing that I really hated - IT WAS COLD. My lungs hurt so bad.

Next year - I want you all to join me!

Kenyon Update

So the good news is that Kenyon got a haircut. I haven't seen it yet but pictures are coming. I wish I had been there to take pictures. It was SO LONG. It has never been cut. And it just keeps getting curly. Thank you SO MUCH to the Wrights for making his day.

The not so good news is that he has a yeast infection that required the central line to be removed. They put a pic line in this afternoon. That is kind of a pain but necessary. Kenyon says he is feeling better but the infection means yet another antibiotic. Hopefully it will work quickly.

No Love!

Not much to love today. Kenyon is back in the hospital. It seems like his gut GVHD is back. Really frustrating. Who knows how long he will be back in there - long enough to get better. He is starting all over on the IV nutrition and then will work his way back up on the liquid diet to food. It is depressing and frustrating but necessary. We definitely want him completely healed. I'll keep you posted.

Happy Valentine's Day to all of you. We love you!

Home Again, Home Again

Kenyon is home! Thanks for all the prayers, fasting, concern, visits, calls, food, childcare, help, etc. It takes a lot to take care of this family.

Kenyon is definitely feeling better than he did 2 weeks ago. There is still progress to be made. And there are A LOT of meds he now has to take. Probably for the next several months. The biggest pain (for me) is that he is still without an immune system so we can't go out in the public yet. Darn it. Someday we will be able to go out and do something fun.

The kids love that he is home. The only problem is that they can't all sit by him at the table. He has been a good sport with all of this.

Guess Who Came To Visit?

Quinn caused quite a stir at the BMT unit today. They finally said that she could come. I don't know if the original doctor who said NO knows about it but oh well. I was happy to bring her and Kenyon was very happy to see her. All the nurses and aides were also happy to finally meet her. Life is crazy for me so I still didn't stay that long but it was nice to visit.

Kenyon has started Progression 1. That means that he got to add applesauce and cream of wheat to his diet today. Pretty much like feeding a baby. Taking it slow and introducing one food at a time.

Kenyon is feeling much better but the treatment of GVHD is a slow process. I don't know when he is coming home. But, it is better that they get him really feeling well. He is still on IV meds and nutrition and that will take some time to switch over.

He gets a little stir crazy but he is able to work (which we are SO grateful for). He has had some great visits (Thank you!!) and then there is always the bike, pacing the halls, and the TV. I think he is managing quite well.

Hospital - Day 2

Kenyon is a trooper but he isn't lovin' it. Today he had a central line/port put in. He had one all summer until about October and then had it removed. It seemed that we didn't need it any more. But it is back - and it is probably better. It is much easier to administer meds, fluids, and IV nutrition.

He is on IV nutrition to get his gut/digestive system working properly. It has taken such a beating and he needs to get things stabilized. The bummer is that he feels hungry and wants food, even though his body is getting the nutrition that it needs. Strange. I think he will be on that for a couple days at least.

Kenyon also had the fun of a colonoscopy today. They put him out so he has nothing to say about that. But it definitely makes me not want to get to age 50. I don't want to drink that icky stuff. I have a hard enough time drinking 8 glasses of water a day.

Thanks for all your love, prayers, and concern. We appreciate it and need it.

Hospital - Day 1

Well, it finally happened. We always knew it could but hoped it wouldn't happen. Today at our clinic visit the doctor decided that it was time to admit Kenyon. I have been pretty emotional about it. But we already knew that I am a cry baby. It is really a good thing. Kenyon has been so sick and miserable with this GVHD. They will be able to take care of him and get him the treatment he needs.

Tonight he is back on that stupid bed and his arm is full of IVs. He is also drinking GoLytely (this big old jug of fluids). He gets to have a colonoscopy tomorrow. Fun stuff. He says that the drink is AWFUL. Apparently the pharmacy is out of flavor packets.

Hopefully we get nurse Richard again. Those were good times. It was actually nice to see a few of the nurses and aides that I haven't seen since this summer. They are so good to us up at BMT unit at University Hospital.

Oh and guess what - Gavin turned 5 today. He is miserable. He had a good day despite the sickness and he appreciates all the birthday wishes and gifts. Hopefully he will feel better soon.

Love Love Love

There are too many good pictures to pick. My friend Heidi did an amazing job. She was super patient with us and worked so well with Quinn. I probably should have done them when Quinn was newborn but I waited until she was 6 weeks. Quinn just wanted to keep her eyes open and watch everything. Near the end of the session, she finally fell asleep.

Check out Heidi here for more of her work. I love her. She is a dear friend and a great example. She is putting up with all the cancer/leukemia junk at her house too. Only it is worse because her little guy is only 6. Heidi is so tough and handles it all so well. I love that I can call her and vent and she knows exactly what I mean. Thanks Heidi. I LOVE, LOVE, LOVE the pictures.

Roid Rage

The news this week after visiting Huntsman is that it is time for steroids. Unfortunately, I don't have tons of details. I win the prize for worst wife. I went to a hair appointment instead of a doctor appointment. I was really going gray, though. Something had to be done. But, that was dumb because now I really don't know enough to update you. Maybe someday Kenyon will write a post for this blog. He has a much better understanding of what is going on.

What I do know is that this steroid should work. It ought to put a stop to the nausea right away and treat GVHD. But, as with all his meds, there will be side effects, too. We'll see how that goes. I just hope he isn't too mad at us all the time. That kind of scares me.

But on a good note, don't you love 24? I am so glad that Jack is back. Monday nights will be so much better.

GVHD is LAME

That is what I think - anyway. The doctor says he is pleased. Easy for him to say. Kenyon is MISERABLE. He feels pretty much as lousy as he has ever felt. Yesterday at our appointment, the doc diagnosed Kenyon with GVHD (graft vs host disease). They have told us all along that a little of that stuff is good. It tells us that the new marrow is doing its job. So we knew this could happen but we kept hoping it wouldn't. The GVHD has shown up in his liver, skin, gut and mouth. So, guess what that means??? More medicine. Kenyon loves getting more prescrips. Not. One of them requires him to swish medicine in his mouth for FIVE minutes 3x/day. The doctor says he should feel some relief quite quickly otherwise we will be getting another prescription for a steroid.

So, there you have it. Keep him in your prayers. He is hating it.

PS - I am mad at Huntsman. The dumb doctor told me that I can't bring Quinn anymore. Please. Snotty toddlers - OK. Tiny little babies that need their mom - Not OK. Ughhh.

A Little Good News for Kenyon

The worst medicine of all is OVER. It is called GenGraf (cyclosporin). It is the immuno-suppressant drug. Kenyon has been taking this medicine for a LONG time and it has made him so sick. Even the sight of these pills made Kenyon sick. It was probably one of the worst parts of this BMT for him. Of course, if that ugly GVHD (graft vs host disease) ever shows up then he will go back on it but so far so good. Now that he is off that medicine, his new immune system will start working. But it is weak. So, it is still really important that we keep him away from all germs for about 3 more months. Last night Kenyon and Quinn stayed home from the ward party to try and avoid some of that. It is such a bummer because he would love to get out of the house and join in the festivities. But better safe than sorry. Plus, he really hates that mask.

Shortly after I made my last post about Kenyon, we got a call that his counts are moving in the right direction. He is at 98% donor marrow and 2% his own marrow. He has clinic on Monday and hopefully will get a little more info on what the plan is.

We are happy that he now has all his hair back on his head. We even had to give him a little haircut a few weeks ago. It is different and actually better. I was pretty worried about how it would look but I like it!

Kenyon Update

Today we had our 100 day evaluation meeting with the doctor (even though it is actually more like 112 days). It was kind of complicated and that makes it a little difficult for me to put into words exactly what the results are and what they all mean. I should really make Kenyon write this because I think he understood it all a little better than I do. But here goes... (Some of you might be bored with all the details - long story short - Kenyon is doing quite well).

Kenyon is doing well. He still HATES taking pills but his appetite and energy are improving - gradually, of course. The blood marrow tests show no sign of CML. That is great! However, other tests show that 97% of his marrow is from his donor and 3% is still his own. That is not uncommon for patients at about day 100. But, it has to get to 100% donor marrow. The problem is that left unchecked the 3% could start producing leukemic cells. The doctor reassured us that there are "many tools in the toolbox" for this problem. The first step is to speed up his medicine taper. That forces the donor marrow to step it up and fight off the 3%. The drawback to this tactic is that the chance of GVHD (graft vs host disease) is more likely - but not necessarily guaranteed. (Defense for GVHD is to continue to avoid any infection and sunburn). Next there are some meds or infusion methods that they might try. It also means that we continue to make frequent visits to Huntsman and more tests in month to check those percentages.

So, overall it was quite good news.

While I was sitting in the waiting room this cute gal approached me wanting to talk. She and her husband are from St. George and a little younger than us. Her husband is preparing for a transplant at the end of the month. They have a 1 and 3 year old and are also expecting a baby. She had so many questions. It was nice to talk with her and share a little of our experience. I am so glad to be this far out and able to tell her how blessed we have been and encourage them that it will work out. I know the stage she is in and it is such a scary, overwhelming place. I just can't imagine having to uproot from home and move to go through this. That will be a whole different challenge for her.

I have also been following an 8 year old boy, Trent, here in the South Jordan area who is losing his battle with AML. They had a great fundraiser for him at Chick-Fil-A on Monday. It was packed so hopefully it provided a lot for his family. If you want to be inspired - read what he has written on his blog. He is an amazing kid!

We continue to be so grateful for all the love, support, babysitting, prayers, etc. Thank you!

Hip Hip Hooray...

It is Day +100. What does that mean? Well, it is kind of complicated and a little anti-climatic but it is a big milestone for Kenyon. It is amazing that 100 of days have passed. It hasn't been great but definitely not as bad as it could have been. We have been blessed. I would love to have a big party -but not the greatest plan because he still needs to be very careful about germs.

We don't have our 100 day conference with the doctor until the 14th of Oct. when all the test results are back in. But, the main idea is that if Kenyon didn't have any GVHD (graft vs host disease) before day 100 then the chances of GVHD after are less. He really did quite well without major complications during the last 100 days. It also means that he begins to taper off his meds. We hope that he will feel lots better as he gets rid of the number of pills he swallows each day.

He still struggles with some nausea but his appetite is much better and seems to be putting weight back on. His hair is growing back.

The warning is that while he is feeling better each day - he is still on immuno-suppressent drugs. That means - he really needs to be careful - still. That is mostly a problem in large groups or around anyone who is sick.

We are looking forward to him being back to 100%. In the meantime, we are also counting down the days to the baby coming. 34 days!! That kind of freaks me out. Time to get serious about this. I am absolutely not ready. It is panic time.

The kids and I were excited to finally finish the Book of Mormon this morning. Don't ask us how long it took us. I read to the kids every morning over breakfast. Sometimes it is a chapter and other days we get in a few verses. But we made it!! We talked about Moroni 10 this morning and Teague said, "Every time we read the scriptures my testimony gets stronger." Love it!

Hey Good Lookin'

Today I shaved Kenyon's head. The hair was coming out in big chunks and all over everything so it was finally time. I was kind of scared but it turned out good. The BMT unit has special clippers so that I couldn't cut him (that would be bad). I think we might keep him bald for a while. I like it! The doctor said that maybe by day 100 he would like he had a short buzz.

Kenyon got a couple bags of blood today and he was feeling quite a bit better than yesterday. We love the good days!

The update from Seattle is that the kids have been busy collecting slugs and playing tennis. We used to love salting the slugs on our way to school. Kind of cruel, I guess but we thought it was cool. My sister Jen was the only one we could dare to lick one. Did you know that if you lick a slug, your tongue goes numb? Good fun fact to know.

I talked to the doctor today about donating the baby's umbilical cord blood. It is getting a little easier in Utah. I was so happy to find out that they just set up that option at St. Marks where I will deliver. The only hitch is that you have to deliver in the day time when they have someone on staff. It is such an easy way to save someone's life. At the BMT unit today, a patient received a bone marrow transplant from umbilical cord blood. There was no other match available from the national registry. And, the doctor told me that umbilical cord blood is a great safe option and it doesn't require a perfect match to have success. So for any you giving birth - -check with your hospitals and get it set up!

The sprinkler is getting fixed. Thanks for the offers of help!

End of Chemo Day -2

Well it was a crappy day for Kenyon but he has completed his chemotherapy treatments! Hopefully tomorrow will be a better day. It is considered a day of rest. He will still take quite a few different meds but none of that icky stuff. I wish I could tell you more but I haven't even actually talked to him now in quite a while. He is too miserable for much talking.

Chemo Finally Kicks In

Well, I skipped a day of blogging because there really wasn't too much to say. But it is looking like Day -3 isn't much different from Day -4. Kenyon is exhausted. He sleeps most of the time I am here although he does wake up periodically and we exchange a few words. He is on Day 5 of chemo. Tomorrow is the last day of chemotherapy!! The nausea is making him miserable but they do give him lots of good drugs and then he seems to perk up or fall asleep.

I brought the kids in for a very quick Sunday morning visit. We were all clean and only stayed about 10 minutes. Kenyon put on a good face and the kids were happy to see him. Of course, it reminded them of how much we wish he could come home. Gavin can't understand why it takes so long to get better. It is complicated for me and a little 4 year old brain.

You can see that the kids were very interested in the machines and tubing and how this whole process works. Kenyon was patient enough to talk them through it.

I have been happy to learn of some readers out there that I didn't know we had. Thank you for all your interest and support. We appreciate it so much.