Monday, June 30, 2008

Nothing Much

We are so happy that Kenyon continues to do so well. His blood counts are steadily dropping. We are definitely at his lowest point so far but they will continue to drop - and that is expected. He had a platelet transfusion today. I would think that he will need another transfusion tomorrow. He is taking it easy but overall feels ok. The doctors and nurses say he is on course. For that, we are grateful.

The kids made it to a very HOT Seattle. I am told that Teague said to my mom, "You know that thing on the wall that makes the cold air come out. Can we use that?" Well, it turns out that the "thing" on the wall known in Utah as AC does not really exist in most Seattle homes. It doesn't get to 95 very often. The rest of the week should cool off and be a little more enjoyable.

I think Kenyon's favorite movie viewed so far is Bandits. Thanks Ryan!!

Saturday, June 28, 2008

Spoiled

We are spoiled. We are so blessed to have so many good friends and family taking such good care of us. Lots of help and generous gifts. I couldn't even list everything that has been done. I will try to get to those thank you notes but if you read this please know how grateful we are for all the notes, gifts, helping hands, words of encouragement, prayers, etc.

Today Kenyon was really feeling good. It was a pretty good day except we couldn't leave and do anything. His blood counts are steadily dropping and will continue to for another day or two. Today he was craving a snickers and Lucky Charms so I got that taken care of. Just about anything tastes better than a tray of hot hospital food.

Friday, June 27, 2008

It's All Good

So today there is not much to say but in case you are checking this will give you something new to read.

The doctors/nurses are pleased with how his doing. He is working on building his appetite back up. He really needs to work on increasing his calorie intake (that's nothing new though - is it?).

The side effect of one of the meds that seems to be really annoying him is bad dreams. Apparently they are vivid HD dreams that are always fast moving. They typically include planes or trains (probably because of the sound of his bed) and Mexicans. Go figure. I think it is hilarious but it is driving him nuts. He just wants to sleep soundly.

They expect that in about 3 days or so he will hit some of his tougher days. That is when they expect to see his lowest blood counts and need transfusions. He may also start dealing with mouth sores - which we have heard can be absolutely horrible. Last night he had some popsicle treatment that is supposed to help with that. I guess he was eating popsicles and cups of ice for a couple of hours. We'll see if that helps. I think I have a few neighbor kids who would think I was the greatest mom if I let them have popsicles for hours on end.

On the home front things are cruising along in the basement. We have such great neighbors who are working so hard to help us get that done. My mom has washed all my blinds and windows. And she pruned everything in the yard and has been weeding and planting. Now my problem is a sprinkler problem. If you know how to fix sprinklers - I have one that I don't know how to fix. I think it is a broken pipe or something. Lame. Those are the kind of problems I don't handle very well.

My kids leave tomorrow to have a great adventure with their grandparents. They are pretty excited and anxious to pack. I am sad but at the same time so grateful. It will be easier to not be juggling so much.

Wednesday, June 25, 2008

Birthday Photos

Today at 4 the moment finally arrived! Brett and his wife Jody came to our room a little earlier and we hung out until the stem cells arrived. Brett went through two days of having blood pumped out through a machine that separated the blood cells. Hopefully I will get some pictures from him that I can post. He is a good sport because it certainly wasn't easy.

Kenyon holding his new stem cells.
It was pretty crazy to watch it slowly move up the tubing to his chest.
Feeling a little stronger as he takes in his brothers generous gift of life.
We sat around and watched it drip in for a couple of hours. Brett kept us laughing through it all. We kept waiting to see if his sense of humor was getting passed on to Kenyon.
Blood Brothers!
It was a great afternoon. I loved having Brett and Jody there with us. We know this was a huge sacrifice of their time (and their family).
The nurses and aids came in with a pink blanket and a balloon. Volunteers make the blankets that they keep for BMT patients. Unfortunately they were out of more masculine colors. Kenyon didn't mind. Then we all sang a silly song of Happy Birthday. Happy Day!

Kenyon was pretty tired and jittery all day. He has had a hard time settling down and getting comfortable (side effect of the meds). But when I left he was getting some good drugs to help him sleep for the night.


I can't express how grateful I feel. The process is amazing and then to have a brother that is so willing and able. It is overwhelming to think about what a gift it is to give Kenyon this amazing opportunity at life. We are so so so blessed. How do you say Thank You for that?

Happy Birthayday to Kenyon!


Today is Kenyon's NEW birthday - June 25th. I came to the hospital this morning and he was sitting up in bed and said hi to me. The blinds were open and the TV was on. It was the best. He is clearly feeling better. (It will get worse again but it is nice to have a good day here and there). His bowl of cereal was empty - a first since Sunday. He is sleeping now - still tired but at least not puking.

The transplant is happening sometime this afternoon. His brother, Brett, is just finishing the "procedure" where they take his stem cells. We are so grateful. What an amazing thing.

I was telling the kids this morning that it is Dad's birthday today. Teague said something about "what a yucky birthday in the hospital." My mom reminded them that most human lives start in a hospital and aren't all that fun but definitely joyous. Next year, when Kenyon is ONE, we will celebrate a little more and maybe he can smash his cake in his face.

I will update later on how it all went and hopefully we will have a couple of pictures. :)

Monday, June 23, 2008

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.

Sunday, June 22, 2008

Update on Day -3

In the couple hours since I have posted, I can say that he really did put on a good face for the kids this morning. Good thing we got that visit in when we did. He got his 5th day of chemo around noon and it has hit him bad. He has so much medicine going in him it is crazy. They are trying everything they can to make him comfortable but he HATES this. I haven't really talked to him much today because he is either so sick or asleep. Besides nausea he has jaw pain - a side effect from today's chemo -cytoxin. I am not sure he loves all these details being out on the web but I know many of you want to know what this is really like.

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.

Friday, June 20, 2008

Day -5 with Richard Simmons


Well, day -6 was quite uneventful except for the headache. But by the early morning hours of day -5 this lovely tiny little bag of chemo started to kick in. Kenyon can't wait until this stuff is over. Midnight is the last treatment of this kind of chemo. Saturday will be a day of rest from chemo but come Sunday it might be worse. We will start a new type of chemo. Thank heavens for the drugs that treat the drugs. The anti-nausea medicine seems to be helping but it is pretty miserable when it isn't. The fatigue is definitely setting in. Kenyon got quite a few little naps in today. Our neice Annie lent us their Nintendo DS and games. I have definitely developed quite the little addiction to playing even though I have a lesson for Sunday that I really should be working on. I am determined to get my brain age to a more reasonable age. I am not admitting what I started out on.
We know that you really want an update on the construction outside our window. Level 5 of the new hospital is moving along. We can no longer see the U on the hillside. I have been pretty entertained watching the cranes and workers put this building together (do I sound bored?).
Today was definitely a tiny bit more entertaining thanks to our nurse. No lie his name was Richard and he looks exactly (permed hair too!) like Richard Simmons. And he has just as much obnoxious energy. He came bounding into the room everytime - regardless of Kenyon's sleep schedule. He was loud and goofy and energetic. But, he did his job so we will take it. I know all about his cats, swamp cooler, mom and her diet coke addiction, you name it.
We have had lots of visitors. I don't really know how Kenyon feels but it is nice to visit with people for a few minutes. Don't be offended if Kenyon falls asleep on you. It just might happen. When my sister and brother came they brought Kenyon and Hulk "Radiation Rush" slurpee (real name). You can't really pass up on a slurpee with the name radiation. It was a little too perfect.

Wednesday, June 18, 2008

Day -7

Are you sick of the count down? We are!

Today was really a pretty good day. The nurses say that he is doing better than most patients. He really hasn't experienced any visible effects of the chemo yet. They up-ed the dose of chemo and then the brought it way down. Tonight he will have had 8 does of chemo. So far so good.

Right now the hardest part is being trapped in this little space. We have started playing Settlers of Catan online. We watched the first three episodes of Heroes. We like it. We also had a few visitors which broke up the day a little bit. I am just scared for when it all hits - which it most certainly will.

The kids swam in their cousins pool for hours today! They were so happy. Thanks to everyone who is helping so much to make this time easy on the kids and me. We feel so blessed.

Tuesday, June 17, 2008

Sleepless Nights

The first night was apparently HORRIBLE. Kenyon's bed is this pressurized air bed. It fills with air every few minutes. When it turns on it makes quite the noise. Kenyon describes it as an aircraft carrier. Then there is another noise that we call the "jackhammer." I don't actually know what it does but it comes on at regular intervals. The noise is right under Kenyon's head. Those noises combined with regular blood pressure tests, nurse checks, etc. made for one very sleepless night. I think he better start taking the sleeping pills and wearing ear plugs.

The chemo started this morning at 6am. He is on his 3rd dose (they come in every 6 hours). So far there are not any major side effects but we are told that they are coming. They run regular blood tests and apparently they came back and said that he needs to have his chemo increased.

I only spent a few hours up there today. It is tricky to be split between wanting to be with the kids and wanting to be with Kenyon. It is making more sense to have the kids be with Grandma and Grandpa this summer. They will be so happy. Gavin cried himself to sleep last night because he wants Kenyon to get better faster. He doesn't understand why it takes so long and why he can't be with him. It is so hard to explain.

Thank you to the visitors who stopped by today. He appreciates the support!

Thank heavens for the hot water because the kids have been playing out in the swimming pool at our neighbors house. Swimming always makes my kids happy.

Monday, June 16, 2008

Day -9


Technicially, the doctors call today Day -9. That means there are nine days until transplant. Then we count forward. It was fairly uneventful other than I seem to not stop crying. It really needs to stop soon. It was harder on me than the kids to watch them say good-bye to Kenyon. Elise was emotional but she always is so that wasn't surprising. Teague and Gavin were more interested in getting to their friends house. I just overthink everything, I guess.

We checked into Kenyon's lovely new room. It is actually quite ghetto. Clean but very old. From Kenyon's bed this is his view. Don't worry - I don't think he will be easily persuaded to give up his BYU loyalties.

It might be a pretty long 4+ weeks. We were kind of bored all day but at the same time the nurse and aide came in often to give us more information, more meds, drinks, etc. It is quite a schedule - including very early morning wake up calls. LAME! Tomorrow morning he starts chemo at 6am. Tomorrow will be even more real. Hopefully - he will handle the meds and treatments well.

If you have any great ideas for time fillers we would love them. We got online and played a little Settlers of Catan. We are thinking of trying out the Heroes (NBC TV series). Anything?

He tried out his exercise bike and got a little workout it. And our bishop came for a visit. That was nice.

Thanks for all the love and prayers!

Sunday, June 15, 2008

DELICIOUS!


My cute niece, Lauren, made these yummy cupcakes pops featured on this great blog called Bakerella. Check it out. But even better - make these cupcake pops and then be careful how many you eat. They are kind of dangerous.

By the way - Lauren - if you read this you better start a blog and put all the cute things you make. You are amazing.

Happy Dad's Day


My kids have a great dad! Sadly, he didn't feel very well today so most interactions included Kenyon laying on the floor and the kids talking to him. He did sit up for a breakfast of crepes and he made it to church. I asked the kids what their favorite thing about Kenyon is - pretty much unanimous - being chased. The kids LOVE being chased and tackled by Kenyon. They also love playing soccer in the backyard. The next favorite thing is that he will squirt redi-whip in their mouth and they think that is the greatest thing ever!! He is a fun dad. I feel blessed to have such a great husband to be the father to our kids.

Some cute friends of ours in the neighborhood provided a fun outing at Boondocks. The weather was great and the kids were in pretty good moods. The funny thing is that their most favorite part of the day - was turning in the tickets and picking out their cheap little prizes. You can see how a gambling addiction could get started. They couldn't get enough tickets and were willing to give their all for just a couple more tokens - all in hopes that they would pick the right game that would spit out just enough tickets for that next bigger prize. It was pretty funny. Thanks for the perfect family activity before Kenyon is out of commission. It was a very thoughtful, generous gift.

Friday, June 13, 2008

And the baby is a ....


Good news! Boy or girl is good news. The baby is healthy and that is truly a blessing. But we are having a girl and that makes everyone at our house excited. Elise is especially thrilled. Gavin would liked to name her "Beach." We'll see if we can't come up with another name. She was very active for the ultrasound and was busy sucking her thumb and yawning. We look forward to her arrival in November.

On another note - Kenyon had his central line/catheter put into his chest today. It went pretty smoothly. Unfortunately he had a lumbar puncture (spinal tap) on Tuesday and he has been miserable. He does ok if he is laying flat but that isn't any fun. The doctor said he would do something on Monday to fix it. That doesn't really do me any good because he will be admitted to the hospital on Monday anyway. Lame! Oh well.

Wednesday, June 11, 2008

The Big Plan...

I think I said that I would keep everyone updated and now I realize that I haven't done that very well. I promise to do better...

Kenyon will be admitted to the University of Utah hospital on Monday, June 16th. Am I freaking out? Pretty much. Some days it feels real and other times it really feels like this can't be happening. We have been to lots of doctors appointments, classes, meetings, etc. His brother was a perfect match on all their scales and that is such a blessing.

When he goes to the hospital the first 8 days include a series of chemo treatments and hydration and a few other drugs. It won't be fun but the goal is to kill that darn leukemia. Then when everything is sufficiently killed off, Kenyon's brother will donate his stem cells. The process is a little different that a bone marrow harvest where they suck the marrow out of the hip bones. The peripheral blood is collected from one arm and run through a machine that pulls out the necessary cells and then runs the remaining blood back into the donor. Pretty amazing. The next day, Kenyon will receive the transplant. It is really quite anti-climatic. It pretty much just drips through one of the tubes that will be hanging out of his chest and within an hour or two it will be done.

Then we wait...and stay healthy. We don't expect him to come home for 4-6 weeks. We hear different numbers every time we talk to someone.

I appreciate all the offers for help. Everyone has been so thoughtful and generous. Your prayers are definitely appreciated and felt! I think I have the kids squared away. They are looking forward to a super fun summer in Seattle and California. There will be opportunities to help - I am sure - but for right now we are doing fine.

I will definitely post often on his progress.

Sunday, June 8, 2008

Another recipe update

Once again my friend Amy has improved one of my recipes!! The Baked Four Cheese Pasta is super yummy but really not good for you. Turns out that the cup of cream in that recipe has 80 grams of fat and 800 calories. And that doesn't include the cheese or bacon. Yikes! So, she learned on the food network that you could replace the cream with evaporated milk. She said it turned out great and reduced the calories of the milk to 200 and no grams of fat. Gotta love it. I think I will give that a try this week.

Tuesday, June 3, 2008

Favorite Post

I just spent my evening reading my favorite post of the week (actually I did a few other things too but it does take awhile to read). My friend Courtney and her husband just participated in an Amazing Race in Utah County. First of all - they won a trip to Cancun so that is pretty cool. But, the race sounded awesome. Sign-ups have already started for next year. Kenyon wants to sign-up tonight. I am a little nervous - May doesn't prove to be our best month but things should be different next year - right? Anyway, if you like the Amazing Race or anything about Utah County - check it out!

In fact - I think we could create a couple good extended family Porter teams (Dayna, Annie, Lynsie, Angie....). We could have some serious competition.