Weekly Update

I am staring in the face of two conflicting goals. One, to always get to bed by 10:30, two, to write a blog post every Sunday. It's 10:29. I'd better be quick!

It's strange for me to be back. I can't believe it's only been a week. It feels like forever ago that I left home.

Nathan continued to have radiation this week. It really takes a lot out of him. He walks into the room looking fine and walks out looking like a zombie. Imagine being outside in the sun all day. All that radiation just drains a person. It's like getting more than a day's worth of sun in only a few minutes.

Nathan said he feels like Wesley, from The Princess Bride, when he was being tortured. He feels like the technician should say, "I just sucked one year of your life..."

After radiation, Nathan rests and sleeps the rest of the day. I'm glad his appointments are in the afternoon so that he gets a little time in the mornings. He's been able to rest this weekend and gets to start all over again tomorrow, poor guy. Three more days, then, if all goes well, he will get time off until next week when he will start total body radiation in preparation for transplant.

Megan has decided to go out for cross country! I hope she can get in and that is not too late in the season. There is a long story that goes along with this, but for now I will just say I am so proud of her great attitude.

Michael went into surgery to get pins in his wrist on Tuesday morning. I wish I could have been there, but he called me before and after the surgery. Since he won't get his cast until Monday afternoon, he has been able to stay home from school and has told me he's still able to use a video game controller by using his chin - just like he did last time he broke that arm and had to have surgery on it.

Emma is excited to have friends in her classes and is loving band. I'm excited that one of my kids is and I think she will quickly catch onto playing the flute. I love talking to her on the phone and hearing about her day. It's one of the things I missed when we started homeschooling.

Merain has a great teacher who has called me to let me know that she is doing wonderfully at school. Merian is having a lot of fun in Mrs. Little's class too and is planning on playing the trumpet. I think she will look so cute! I miss her hugs and hearing her tell me that I'm the best mom ever!

Derek has started soccer. He was so excited to do that since Brennan, Asher and Ethan all play soccer. I hope he is having fun and I wish I could be at his games.

Eliza is in Kindergarten. I'm sure she is doing great and is loving it.

Norah seems to be happy when I hear her laughing in the background as I talk to the other kids. I can't believe how much older she sounds each time I talk to her.

It is hard to talk on the phone the Derek, Eliza and Norah. Derek get's easily distracted, Eliza keeps asking "what?" and Norah just doesn't get it. I don't think it seems real to her. Tomorrow we are going to get on Skype for family night and I can't wait to talk to each one of the kids.

They are all doing so great. It is such a blessing to know that they are happy and having a great time where they are. I hate being apart, but I know this is the best situation for everybody.

Peter is standing up really well and can take a step or two. Nathan's transplant is scheduled for the day before his birthday so it looks like he will be turning one in the hospital. I think he misses the kids too. He smiles when I show him pictures. He gets lots of attention from strangers. His first words might be, "look at that curly hair!"

So, there's a quick catch up. It's about all I know from being gone! :-)

Sunday Update

I've decided to do weekly recaps to somewhat keep this journey organized.

This week Nathan's dad stayed with him up at Seattle while I stayed home to take Michael to his doctor's appointment and spend some time with the kids for their first week of school.

Nathan started radiation. On Friday his dad dropped him off in Ellensburg on his way home and I took Nathan home for the weekend. It has meant that I've been able to spend more time at home and I have loved it. Poor Nathan has slept all weekend. It looks like radiation is going to be harder than chemo, which is too bad because there is a lot more of it to go through. Hopefully it is just because Nathan was worn out from entertaining his dad for a week and because he used his anti-nausea meds so sparingly. I've been trying to get him on a good schedule of alternating meds so hopefully with that and all the sleep he can get ahead of the nausea and have a better week.

The transplant team said they were very pleased with the results from his last round of tests and are starting to make plans to start the transplant. With any luck we could be back a few days after Christmas! I wish our doc here would have followed their recommendation and used that chemo regimen all along. 

Two more weeks of cranial/spinal radiation and then on to total body radiation to prepare for transplant. Not looking forward to this, but it's good to be moving forward.

On Monday, Michael saw the orthopedic surgeon and his x-rays showed that the bone had moved back and was displaced again. Mike says he's not in pain, but I think he's just being tough as he's asked for pain medication all week. Usually, once a cast is on, my kids have never needed anything. Michael will go in this week for more x-rays and to see if he will need surgery.

I have LOVED being home with the kids for a week. It was weird because as we went through our new schedules I would think of how I'd do things differently next week and I'd have to keep reminding myself that I wasn't going to be here next week. 

I'm not looking forward to going back tomorrow but I know the kids are in good hands. They are doing very well. They are happy and helping each other out. I hate missing out on this time with them, but it will pass and we will be a family again soon.

I think I'm a much better mom than I am wife. It's a good thing I have four months to practice!

Last week we were able to take Emma, Merian and Eliza to the zoo. On the way home we did some school shopping in Issaquah and stopped at Trader Joe's for some treats.

Saturday we had a birthday party at Grandma Lewis's for all the August birthday's. There are a lot! It was such a nice relaxing day with our family and it felt like summer is supposed to.

That night, Michael came home from a scout camp out with a wrist injury. It was pretty swollen and painful for him to move. He said he couldn't sleep at night and so I was pretty sure it was broken. It turns out it was a pretty bad break. Both bones were broken clear through with one also having the top part fragmented. The other one was very displaced. Michael received two shots of lidocane into his bone marrow and then the doctor forced the bone back into place. Since it had been a couple of days since the break, his muscles had hardened around the bones and it was not easy to do. I could tell it was a painful experience but Michael was a trouper and during it quipped, "is that all you got?"

He did better then I. Over the past months I've watched Nathan undergo painful procedures and I've hated it. I've held my breath, prayed and sometimes have wanted to cry, but it's different when it's your kid. I thought I was going to pass out or be sick.

His arm was splinted and he is to see an orthopedic surgeon. Great timing! Swimming season is over! He is also very lucky because it is on the same arm, but just below where he broke it when he was younger and had to have two rods put in. We were warned that if he ever broke that arm again it would not be good. At the time I didn't think it would be very likely that he would break the same arm twice.

I wasn't able to do everything  I wanted to get the kids ready for school and I don't want to leave Michael until he sees the ortho and we know he won't need surgery, so Nathan's dad is going to take him up to Seattle and stay with him for a few days this week. I am so glad I get to be with the kids for a few more days and be here for the first day of school, but Nathan is starting radiation this week and I wish I could be with him. It's hard not being able to be in two places at once!

Nathan will start spinal/cranial radiation this Wednesday and have 13 hour long sessions. During that process his spinal fluid will be checked and hopefully cleared of cancer cells. If is is he will move on to total body radiation in preparation for transplant. Once that happens we won't be able to come home anymore. We had hoped to be done by Christmas, but it doesn't look like that will be the case.

I am glad we were able to come home this weekend. Nathan was able to give the kids back to school father's blessings.

Starting the transplant is scary because the other side is uncertain, but it is the only way out of this and it will be good to get started. Having it be so hard to get rid of the cancer makes the transplant a welcomed event instead of a dreaded one.

It will all be okay.

We were able to go home for a few weekends and have brought the kids up to stay with us. The first week we brought Megan and Norah and were able to take them to the aquarium. This week we have Emma, Merian, and Eliza with us. It is so fun to have the kids here. I'm glad we have been able to do this before school and Nathan's transplant starts. We need to find a way to get the boys up next! Once Nathan starts the transplant process we will have to stay within 20 minutes of the hospital. When Nathan was in the hospital for a week of chemo he said it felt kind of like being in a nice prison.

It always feels surreal going back and forth between home and Seattle. Where ever we are, the life we leave behind seems like a dream. When I'm home, I wish I could freeze time and keep us all together, but I guess everyone wants that. I don't like to think about the day the kids will grow up and leave! I love being with them and being able to hold them.


Nathan has had lumbar punctures with chemo twice a week with the goal of clearing his spinal fluid of cancerous cells. This weekend we were told that the cancer cells might have mutated, his LP's for this week were canceled and we met with a radiation oncologist that specializes in cranial and spinal radiation. We have our consult with the team tomorrow morning to find out more but it looks like Nathan will be starting cranial and spinal radiation next week. He will undergo radiation for two weeks and then another LP will take place to determine if his spinal fluid is clear. After that it will be full body radiation to prepare for transplant.

We wanted to avoid extra radiation to his brain, (total body radiation was already part of the transplant) but chemo isn't being effective and that treatment is not good for his brain either. After meeting with the doctor today, we see that this is the path that we must take. As an interesting side note, we found out that Nathan will be given tattoos as markers for them to place the rays. How weird is that? He is going to be so scarred and marked up when this thing is over!
 Megan seems to have everything running smoothly at home (and she's still smiling!) She amazes me. Michael and Emma have impressed me when I've been home by doing their services (what we call chores) without being reminded. They take care of the younger kids and ask me what they can do to help. After our tree blew over in the windstorm, Michael chopped it up into pieces and filled the garbage can without being asked.


I really wish I was home for the start of school. It is such an exciting time and so important to start new routines. I know the kids will do fine, but I'm a little bit nervous since we've been homeschooling.


I came home to two stacks of medical bills. If it wasn't for the generosity of so many people, I don't know how we could do this! 

Since I posted last time we were able to go home for the weekend. While we were gone:

• Michael grew taller than Nathan
• Derek lost his two front teeth!
• Norah began to talk so much more and so much clearer
• Merian grew enough to put the dishes in the upper cabinets away
• Peter missed the kids and the kids misses Peter. They loved being together again.

While we were home we took Derek, Eliza, Norah and Peter on a bike ride and Emma and Merian to Adventures Underground. We tried to do something with Megan and Michael, but teenagers have busy schedules. Hopefully we'll get to go home again and do something.

Monday morning we left for the UW Medical Center. There, Nathan received Hyper CVAC part B. He was discharged on Friday. While he was there Nathan had an MRI that did not show any brain tumors. The chemo he received should penetrate into his spinal column and, along with the lumbar puncture with chemo, hopefully will rid his spinal fluid of cancer cells. We will find out the results of his Monday LP today and he will also receive another one. 

Nathan enjoyed the food at the hospital. I wish they were serving the same thing in the cafeteria. It was hard to find anything healthy there. It seems counter intuitive that a hospital should sell so much junk. While we were there, Peter and I went on walks around the beautiful UW campus. I look forward to showing the castle-esq buildings to the kids when they come visit.

Nathan's blood pressure was low when he was discharged so we have spent everyday since then in an infusion room for him to receive liquids and transfusions as his counts have fallen. Sometimes we are there for seven hours. When you add that to the other appointments, that makes for a long day at the clinic. Nathan has had a couple of rough days being sick and in pain, but all the fluids and transfusions are helping and he is looking better. Hopefully he'll be ready for transplant soon and we will get a short trip home while we wait.

Peter loves all the attention he gets from nurses and people in elevators. We spend so much time in elevators! I've probably ridden more in the last month than in my entire life!

I miss the kids but I'm glad they are having a fun summer. I can't believe it's already August. Seattle is cold and gray a lot of times so it feels like we are skipping summer this year.

I'm glad we've been able to go back home a couple times, but it feels like I am living a double life. When I am home, Seattle seems like a dream and, when I am here, home seems so far away. I look forward to things settling down and having the kids visit.

Wednesday was Harry Potter's birthday. Since it is in between Emma's and Merian's birthdays they decided to have a combined birthday party then. It sounds like it was a success. I'll have them write about all the details.

Peter is waking up so I'd better get him ready for the day and meet Nate at the clinic.

I just got off the phone with my mom. She told me about how she told the kids that after she got back from dropping off books at the library they would clean the house. When she got home Eliza surprised her by cleaning the whole downstairs by herself! I love that girl! I miss her so much!

Megan sent me some pictures of the kids. We soaked them in. We've been away for so long and I just want to hold them!

Megan told me that Eliza and Norah were so sweet and were always holding hands. Before they left I asked Eliza to keep an eye on Norah and I guess she did a terrific job. It is such a blessing that our kids are such good friends. I know they are looking out for each other and they are not lonely. I would worry that they don't even miss us, but when we are home they like to make up for all the snuggling we've missed out on so I know that they do. I'm happy that they are happy when we are gone. It has been a surprise to me and great blessing that being apart is bearable and I feel it is a product of many prayers.

Nathan was discharged from the hospital yesterday (Friday) and we spent today at the clinic for infusions. We will be back tomorrow, and the next day, and the next day...until they are satisfied he is in good enough shape for us to go home for a brief visit before his transplant (assuming his next tests are acceptable.

Peter and I stayed at the hospital with Nate and Peter handled that pretty well. When Nathan was sleeping I would take Peter on walks around UW. It is a beautiful campus. I was very thankful for one nurse who would whisper when she would come in the middle of the night. She never woke Peter up! I wish I knew which one she was - I'd buy her a candy bar!

We have some good news and some bad news...

The good news is that Nathan has been feeling better since his last transfusion and we are having a great time...well, as much as could be expected. It's easy for me to say that because I'm not going through all the stuff he is.

Two months after we were married we were expecting Megan. When she was only a five months old I became pregnant with Michael. Emma was born less than two years later. Since I get pretty sick when I am pregnant, the first few years of our marriage was pretty much me being sick and then we were chasing after very active little kids while Nathan was working, going to school and being in Young Men's and Elder's Quorum presidencies. I've always felt kind of sad that we didn't really have the "newlywed" period in our lives. Being here has given us a chance to be together a lot. I've loved how we've gotten to cook together, walk everywhere together, talk about the podcasts we've been listening to, and when Nathan is feeling good, go explore Seattle.

The SCCA House is an amazingly helpful place to stay and we have already begun to make some friends here. It is exactly what is needed. The SCCA clinic is impressive and we have total confidence in the doctors there.

We have been feeling so confident, I was beginning to again feel like we were cheating somehow. That everything was going to be okay. It wasn't going to be easy, but we were so lucky and everything will work out perfectly. We were even given permission to head home for a week or two while we waited for our insurance to review all the test results and approve the transplant.

So there's the good news.

Today we learned that Nathan's latest spinal tap showed cancerous cells. We had hoped that would not be the case because it would mean he would need to receive radiation for his brain which would very likely result in loss of brain function that we were told could effect his professional and personal life. Nathan had previously had clean spinal taps. Hearing this news was almost as shocking as learning he had cancer.

In order to avoid this, we have decided to stay in Seattle instead of going home in order for Nathan to receive a much tougher regimen of chemo. He will be admitted to the hospital as soon as we have insurance clearance and they have a space; probably Saturday.

When we see how tough this particular cancer is to fight, all of our reservations about doing the transplant disappear and we cling to the hope of it saving Nathan's life.

Early next week, Nathan will also have a scan to check for brain tumors. I am so grateful for all the prayers on our behalf. It is unbelievable the difference they make and I will never be able to express how much they mean to us. So, I'd like to ask a favor, please. Instead of praying for Nathan to have a clean scan, I'd like to ask for prayers that there be no brain tumors, but if there are, that they will show up on the scan. I'd much rather face this and get it taken care of. I don't want runaway brain cancer down the road. :)

So that is where things are right now. Peter has been amazing throughout all the appointments and loves the attention he gets, although I know he misses his big brothers and sisters. He was excited to see kids when we went to church on Sunday and he crawls towards the computer when we are on Skype. I think he is gaining weight because I don't like him crawling on the waiting room floors (I gave in and let him once for just a few minutes and he had black knees) and I feed him snacks to keep him happy. I'm trying to think of other things to entertain him. He is bored of his little toys. Bubbles have gotten old and I only use them when the floor is carpeted. I'm thinking about getting a laser pointer, a small mirror and maybe a small car to keep in my pack. I've also thought of bringing a flat sheet and putting it on the floor. He's getting a little bit fed up with being held all the time. I'm open to any suggestions!

(I don't mean to suggest the SCCA is a dirty place. It is the CLEANEST place in the world! But a floor is a floor :) )

Peter is a very vocal little guy. Nathan has been interested in Chihuly since he was at CBC. Last night we walked to the Seattle Center and visited his gallery. It was pretty impressive and Peter loved it. He jabbered about each exhibit.

I'd better go entertain him, but I first want to say how lucky we are. I met a guy that left his wife and children in North Carolina. As much as I hate to leave my kids, I couldn't stand not being with Nathan through this and not knowing how he was doing. We are so lucky our kids are in good hands. Thank you to our families (especially our moms), Megan, our ward and our neighbors!