January (written 1/29/2014)

I'm not going to lie. As good as it was to be home, it was kind of hard to adjust.

First, it was hard to leave the security of our team in Seattle. We miss the SCCA and especially our nurse, Cindy. It was comforting to have our medical team giving us instruction and the hospital just five minutes away. It was so convenient to order prescriptions, pick up supplies and schedule transfusions and appointments. Now it just takes a little more foresight and coordination.

I think I can better understand what it must feel like to come home from a mission. It's a bit of an adjustment to get back to normal life. Life in Seattle was very structured and focused with our lives revolving around appointments, medications, and infusions. It has been a challenge to maintain the kind of structure needed to ensure all of Nate's meds are on time while living in the chaotic atmosphere of a family. 

Sometimes I feel like I have PTSD. I know too many people who have died. I have images I can't shake of patients I couldn't believe were still alive. I realize more than ever how fragile mortality is. There is a great benefit to be with others who are going through the same thing, but towards the end I started looking forward to going home and being friends with people who were going to stay alive.

I really expected our last meeting at the SCCA to be more celebratory. We had finally gotten rid of the cancer! Nate had been in remission for three months! Instead it was a bitter reminder of how close we had come to not even having the transplant and how the odds of remaining cancer free are stacked against us. I still believe we have been granted a miracle. I expect Nathan to make a full recovery, and even if that is not the case, every day we have because of it I will count as a miracle. Still, I will sleep a lot better when we are a year out and it will get easier until cancer is just a distant memory. Instead, I sometimes go through a mental checklist balancing of the facts for and against us.

Soon after we got home, I got a text from my friend in Seattle that her husband would not be seeking further treatment. He had been almost a year out from transplant when they learned the cancer had returned and they headed up to Seattle for a trial. The trial put him back in remission but had such awful side effects they decided to try a DLI – the process of infusing the donor's t-cells – kind of like a jump start transplant. We had dinner with them just days before they found out that cancer had returned again. He looked so great! Yesterday, less than two weeks since they had received the bad news, he passed away. For the last twenty-four hours I have simultaneously felt numb and a vast array of emotions.

Life hasn't felt normal for so long and it's strange to think that everything just carried on without us. Before we left I home schooled and now everyone is attending public school. While they are doing great and I know it is the right thing to do, I hate seeing them leave every morning. I've had to jump into a new routine but things are starting to run smoother. When we came home for Christmas, my mom had the house clean, laundry done and fridge and pantry stocked. After Christmas, we took the three youngest back up to Seattle with us. We just couldn't leave them again! The older kids said they could fend for themselves so the grandmas got a break. Let's just say that coming home to a house with four kids on Christmas break was a little a lot different then coming home for Christmas! Trying to get caught up was difficult because the kids needed so much attention and I wanted to give it to them, but I don't function well in chaos. Slowly things are getting back together.

It's funny, because even though Peter's the youngest he has the opportunity to experience the same sibling jealousy that older kids have when a new baby is brought home. He had 100% of my attention for six months and now he has to share with his older sisters. Every time I would hold them he would run over and want on my lap and try to push them off! He also started nursing like a newborn, silly guy. When he isn't wanting my attention, he is BUSY exploring our house. He has climbed into a bathroom sink and turned the water on, almost electrocuted himself, fallen down the stairs, and eaten laundry soap three times. In my defense, the reason why I didn't hide the soap better after the first time was because I really didn't think he would try it again.

Almost every night Eliza, Norah, and of course Peter, end up in our bed. Luckily we have an extra twin in the school room, from when Nate's mom would come to visit, that Nathan moves to when it get's too crowded. In hindsight, I think buying a king sized bed early in our marriage would have been a good investment! The kids handled us being gone pretty well, but Eliza and Norah still need extra attention. They are very clingy, have had nightmares, and I've had to reassure Eliza that I won't be going to Seattle again.

Nathan is looking better all the time. We marvel at his bushy eyebrows and lush long lashes. I had forgotten that even is hands were hairy! :) Since everything is coming back so strong I guess there is even hope for the top of his head! Recovery is still a full time job for him. He sleeps a lot. He has physical therapy twice a week and a doctors appointment in Yakima once a week. He still has a tons of medication and is on IV fluids. Unfortunately he is still sick sometimes and has to take anti-nausea or pain medication, but that is becoming less frequent. When he feels well he has started taking over more of his care and that has been a great help. I'm glad we spent six months in Seattle so we feel comfortable with managing these things. Our doctor's office in Yakima even looks to us for answers on how to handle things.

Right after Nathan was diagnosed I started thinking about all the things I wanted him to be alive for. Derek's baptism was one of them. On the 25th he was baptized with his cousins Asher and Ethan. These boys are so fun together. It's awesome to see them grow up!

Peter

Peter LOVES being home with his brothers and sisters. Michael missed him so much and Peter had an immediate connection with him. I think Michael is the only one Peter will reach for if I'm holding him.

Life for Peter is much different here than in Seattle. In Seattle our apartment was very tiny and he was the only kid I had to pay attention to. He is now enjoying free range of the house and all the mischief he can get into. He's in that stage where I wonder if he will live until his next birthday. He enjoys climbing on things and, even though he hasn't been eating the food I give him, he has eaten laundry detergent three times. I know I sound like a bad mother for allowing that to happen, but really, after the first time I didn't think he would try it again. He has this crazy intense desire to get into the laundry room and eat that stuff. I think I finally found a way to secure it though.

For a few months now I've been trying to teach Peter baby sign language. He would just look at me with a sly smile that said, "Yeah, right Mom, that's not happenin' but keep going because you look so funny when you do that." I had stopped trying but it turns out he just needed the right motivation. Eliza was eating a piece of Halloween candy when Peter walked up to here saying and signing, "more! More!"

The kids love to hear him talk and are always trying to teach him new words. His favorite words are: ball (everything remotely round is a ball), water, more, uh oh, and ta-dah! Both Michael and Derek, unlike the girls, were really late talkers. This will be interesting to see what it is like to have a little boy that talks.

Peter loves the vacuum cleaner, just like Derek did. He uses Derek's old toy vacuum cleaner when I vacuum. Tonight when he saw Tallia's he went up to it and started making brooming noises.

Peter is still a snuggeler and I love it. He is learning to share me with Norah, Eliza and Derek.

Days +95 - +100 and beyond

It's been an amazing year that started with a diagnosis, was consumed by cancer, and ended with all signs pointing towards remission. We have been amazingly blessed by our mothers, our families, our church, co-workers and community. People are awesome! Looking forward to a year of recovery and life getting back to normal!

Silly things to remember:

• After being in Seattle the sky here looks so BIG and blue!
• I don't have to worry about not having a place to park and it's always free.
• Nathan's eyelashes have grown back so long, thick, dark, and perfectly curled.

It's a Wonderful Life

Today we came home!

Because the results from Nathan's biopsy weren't yet available, our appointment was delayed until the team decided what to do with us. After looking Nathan over they decided to let us go and even rescheduled our Thursday appointments for Friday so we could have another day at home! We also got the best news. The latest PET scan showed the tumors were shrinking! It is so nice to be nearing the end of cancer!

After we got over the slushy pass the roads were clear and as soon as we drove into the garage the kids rushed out to meet us. I got the biggest hug ever from Eliza and Nathan had Norah. It was awesome! We were welcomed home to a sparkly clean house, beautiful poinsettias from friends, and within minutes of being there, a large group from our ward came caroling. Even though we were late getting home, the kids had waited to eat dinner. The table was set and my mom had prepared a yummy roast. (I think that was probably Michael's idea. :-) ) It was late but we didn't eat for awhile. The kids showed us the new songs they had learned on the piano and other instruments and Norah danced for us. Peter had a great time exploring the house and being with Michael. It was such an exciting, happy time and I thought this must be a little what it is like when we join our loved ones in heaven.

Once, when I went out to the car to get Peter's pajamas Norah cried out, "Mom! Don't go yet!" Poor girl. We are definitely taking her back to Seattle with us.

Before bed I rocked each of the kids, and tucked them in. The four youngest made beds on our bedroom floor and are sleeping there.  Emma even came to sit on my lap, but when it was Michael's turn, I sat on his lap since he is so much bigger than me.

After everyone was asleep and I had given Nathan his night time meds, I walked through each room of the house and thought about how lucky I am. Before I saw every scuff mark and flaw but now I realized how beautiful my house is. When I looked through my room, it felt like opening a time capsule, since it has been nearly undisturbed since I left it six months ago. I loved spending time in the school room. It made me remember all the time I have spent there with the kids, especially teaching Eliza and Derek last year. Since we are not homeschooling, the kids have been using it as a craft room and I got to see their latest creations. I had forgotten our kitchen faucet broke before we left and we replaced it with a pretty one! My mom and dad installed shelves in the laundry room and it is amazing!

I am so very lucky. I think this has been the happiest day of my life. I also think my bed has never felt so comfortable!

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It's the next morning, but I wanted to add that Eliza climbed into bed with us twice and Derek tried to once. I wish we had a king sized bed so they could have stayed there!

Days +89 - +94

The good news is we get to go a day early. The bad news it we have to come back the day after Christmas. Hopefully it won't be for too long. We plan on bringing Norah back with us. We'd love to bring more of the kids, but just in case we get stuck up here we don't want to chance them having to miss school. I was really looking forward to being with them for Christmas break. While we are ready to be done with this chapter, we are okay with not being discharged until we have everything under control. SCCA docs are the experts in this field and we trust them. We are hoping Nathan is just a little behind since his cells came in so slowly and it won't take long before we can leave for good - or at least until his one year follow up. Gosh, I like the sound of that!

Seattle has been our home for six months now and our real home seems like a dream. I lay awake last night thinking that soon I will be sleeping in my own bed. As I drove down Mercer the other day I thought how strange it was that it felt as natural as going on Columbia Center Boulevard.

Nathan is still not feeling too great but we hope for improvement soon! Last week he had a PET scan and another endoscopy with biopsy to check for GVHD. We are eagerly awaiting the results and hoping it doesn't prevent us from going home.

Days +81 - +87

It looks like we will get our Christmas wish! We are still scheduled to be discharged on the 24th. I can't think of a better Christmas present than to go home and be a complete family again. I wonder what Peter will think. He will have so many new toys and siblings to entertain him he will cease to spend his days climbing up on the table or emptying drawers, right? It's strange to think how much he has grown up. He was just a baby when we came and now he is a toddler. I keep thinking the kids that I am going back home to aren't exactly the same kids in the pictures I look at daily. They have had experiences, like going back to public school, without me.  Before we left I had planned on keeping in better touch, but it didn't work out. I look forward to getting to know them all and seeing how much they have grown during this time.

We only have a week and a half left! Most of me is so excited and can't wait. A small part of me is going to miss the security of having the SCCA and our team just a phone call away. Also, I've only had to take care of Nathan, Peter and a little apartment for so long. It's going to be an adjustment to be part of a busy household again!

After a week of feeling well, Nathan started getting sick again so he is back on Prednisone. Nathan's immune system is already so weak from the transplant and he is on immune suppressant drugs to minimize Graft vs Host Disease. When Nathan caught a cold, it revved up his immune system which triggered more GVHD. Which means he's on more immune suppressants and more susceptible to sickness and infections. It is a vicious circle and it has made me see how important it is that we somehow keep him well after we go home. I'm not sure how to do it with the kids going to public school and church. I briefly thought about homeschooling, but I know I wouldn't be able to do a good job and still take care of Nathan.

This week Nathan had a bone marrow and skin biopsy as well as a lumbar puncture with chemo. We look forward to learning the results this week and hearing that he is still cancer free. It is always such a relief to hear that the tests came back negative.

Since the beginning this has been my plan:
1. Do chemo
2. Have Transplant
3. Live Happily Ever After

Most of the time I think we are almost to step three, although I now know it's going to take a while before Nathan is feeling up to speed. My heart is filled with excitement that we got our miracle and I want to jump up and down with joy because everything is going to be okay. But then, this week I learned of three people I know passing away. It's Christmas! Families should not be without their fathers or mothers. Mothers should not be missing their little girls. My heart aches for these families. After going through chemo and a transplant they still lost their loved one. They did everything they could, but in the end, it's just luck. It's scary.

I wonder if I am naive. I begin to wonder if it is even possible - does anyone with a blood cancer survive? Is long term remission possible? Will I be unprepared if things don't work out like we want them to? I wonder if I should be more realistic, but I've learned it doesn't do any good to worry. Winston Churchill said, "I am an optimist. It does not seem too much use being anything else." Walt Disney said, "Why Worry? If you've done the very best you can, worrying won't make it any better."

Faith conquers fear. Since the beginning I've felt that this is part of Heavenly Father's plan and that everything is going to be okay. No matter what happens I need to remember that. I'll also remember the promises given in priesthood blessings that miracles can happen and that Nathan will live a long life.

If faith is the remedy for fear, hope should replace worry. We are blessed with many medical advances, so even if we are unlucky enough to have the cancer return, there is still hope. Why waste my time with worry? My seminary teacher would joke it's okay to procrastinate sin. He would tease that we should just keep putting it off. I think I'll procrastinate worrying. I will not waste time thinking about the what if's. I will live in the moment and enjoy each one.

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I waited to post this until we had the results of the last biopsy/lp. Both came back negative!!! This week Nathan will have a PET scan to measure the tumors and cancer cell activity.

Days +75 - +80

This week was full of great news. On Monday, we celebrated day +75. Three-fourths of the way to day +100! Also on Monday, Nathan had another lumbar puncture with chemo. That was not a good experience. For some reason they had a tough time getting in and three different doctors had to try several times. Poor Nathan. He ended up throwing up afterwards and had a spinal headache for a few days. But on Tuesday, we learned that his spinal fluid is still cancer free!!! Wednesday we found out that his counts have been steadily climbing and on Thursday our team told us they are doing everything they can to get us home early - on Christmas Eve! It will be the most amazing Christmas ever!

Since Nathan is now producing blood cells on his own, he doesn't have to go in for daily blood draws. Saturday was the first day since September 16th that he has not had to be in the hospital or clinic. It has been a nice relaxing weekend. In fact, Nathan and Peter are both asleep right now. I feel like this is the first time in 17 years that I've had some alone, quiet time!

Nathan was tapered off Prednisone this week, and unfortunately he's starting to not feel too great again. I hope it's not more GVHD.

Even though we are so close to going home, I can't help but feel more and more homesick. Megan has been so sweet and has sent us pictures and a video of the kids decorating the Christmas tree. (Peter loved watching it over and over. He's going to be amazed to see all of his brothers and sisters at once!) To help time go by, Nathan, Peter and I had a family night where we borrowed Peter's crayons and made our own advent calender. I think it helps to count down the days and keep us busy with some fun activities, not just medical stuff. So far my favorite thing we have done was to teach Peter "Once there was a Snowman." It is awesome to watch him dance to it and he thinks it's hilarious when I fall to the floor. The activity I'm most looking forward to, and the most nervous about, is making Christmas bags for some of the homeless people we see on a regular basis.