This was not a good week for news. Early in the week we were told that, with the amount of cranial and total body radiation Nathan was receiving, it was an absolute certainty that he would suffer some degree of diminished cognitive functioning. He's young and healthy so we hoped it would be minimal. We were told it would likely effect his ability to focus and change his personality. It was impossible to know to what degree.

I tried to get used to the idea of the possibility of my relationship with my best friend changing and prepared to go back to school in case I needed to support our family. Nathan said the last time we were home, as he held our kids, he realized that they wouldn't care if he wasn't as sharp as he had been. They would only care that he was still around. Then we had more bad news.

Even after all the extra chemo and radiation, cancer cells were still found in Nathan's spinal fluid and the CT scan showed that his tumors had grown, one had doubled in size, in the last month. The doctors felt that the chances of a stem cell transplant curing Nathan of cancer were so slim they suggested we forgo the transplant in order for Nathan to go home and spend time with our family. A very generous estimate for the time we would have was between six and twelve months, but most likely it would be much faster. Suddenly, any amount of brain damage or graft vs host disease didn't seem to matter.

The doctor told us he was going to talk to more attendings to see if they had any ideas and also look for clinical studies Nathan might be eligible for.

Nathan and I didn't want to give up. However, we've already spent three months away from the kids and a transplant would be at least three more. Nathan was concerned about spending the rest of the time he has in the hospital and not with the kids. To remedy this we are trying to find ways to have our kids come to Seattle, either to live with us or just to visit on the weekends.

Neither of us slept that night. At 6:30 I took a walk and then went to the meditation room of our building. I prayed and pleaded to the Lord to have compassion and show mercy upon our family. It was shocking to go from an 80% chance to not really a chance at all.

We decided to go home for one last weekend. That is exactly what was needed. When we walked into the house Norah ran to me crying. I picked her up and she wrapped her arms and legs around me and kissed me all over my face as she continued to cry and say "My Mom, my mom, you're home." At first it was bitter sweet. I wanted to somehow bottle up being together, playing in the back yard as a family, going to Derek's soccer game or all of us being in the same van. I wanted to freeze time. It was so hard to enjoy being together knowing that it might be the last. I kept reminding myself not to let the uncertainty of the future rob from the joys of the present.

But we are so lucky. We are surrounded by a caring family, good friends and a loving ward. Today we have been fasting for a miracle. The night Nathan was diagnosed Bishop Kruetz and Brother Howard visited us in the ER. They gave us both blessings and they both mentioned miracles. So far all we have had is bad news. It's time to have that miracle.

All we need is for Nathan's spinal fluid to be clear. There is a possibility that the cells they found were no longer viable. They have warned us that if there is even just one remaining cell, it will multiply and take over. The new donor cells won't likely breach the spinal column barrier to fight the cancer as it hopefully will in the rest of Nathan's body. So this is the miracle we are praying for: that somehow Nathan's spinal fluid will be free from cancer.

We loved the feeling of being at church today. We had planned on only going to sacrament meeting so we could spend more time as a family, but being there felt so good we stayed for all three hours. After, we drove to the temple and had a family meeting on the back lawn. When it was time to leave, as soon as we got to the gate, Norah stopped and started crying. She said she didn't want to leave the temple. The times Nathan and I have gone to the temple I have left feeling so peaceful, confident and happy. I knew everything was going to be okay. I think one aspect of faith is to remember and trust those feelings even when things seem dark.

Nathan and I both feel like going through with the transplant is the right decision. I feel that Nathan can be made whole. We believe that miracles can happen. From the beginning I have felt that Nathan's cancer is part of Heavenly Father's plan. I knew that the outcome was totally up to Him and I resigned myself to accept what ever may come. But I feel that everything will be okay. I keep reminding myself that if this were easy, it wouldn't be a miracle.

Thank you, everyone, who is praying and fasting with us. Your love and prayers sustain us. I know Heavenly Father is listening and that your prayers and fasting make a difference. There is no way I will ever be able to thank you for what you are doing for our family.

 15 And now, O all ye that have imagined up unto yourselves a god who can do ^ano miracles, I would ask of you, have all these things passed, of which I have spoken? Has the end come yet? Behold I say unto you, Nay; and God has not ceased to be a God of miracles.

 16 Behold, are not the things that God hath wrought marvelous in our eyes? Yea, and who can comprehend the marvelous ^aworks of God?

 17 Who shall say that it was not a miracle that by his ^aword the heaven and the earth should be; and by the power of his word man was ^bcreated of the ^cdust of the earth; and by the power of his word have miracles been wrought?

 18 And who shall say that Jesus Christ did not do many mighty^a miracles? And there were many ^bmighty miracles wrought by the hands of the apostles.

 19 And if there were ^amiracles wrought then, why has God ceased to be a God of miracles and yet be an unchangeable Being? And behold, I say unto you he ^bchangeth not; if so he would cease to be God; and he ceaseth not to be God, and is a God of miracles.

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!