Days +61 - +66

This week Nathan had another bone marrow biopsy with great results. No cancer was found! He also had a endoscopy and colonoscopy which confirmed the doctor's suspicions. Nathan has some GVHG in his digestive track. (Everyone says "gut" and I find it quite funny to hear doctors say such a common, not to mention short, word.) This can be a good thing because it means we know those new cells are working and there is a good chance they will attack cancer cells if any remain. It is also good because it means Nathan has been prescribed two steroids that have made him feel so much better. The nausea is all but gone, his appetite is better and he has more energy.

Nathan's GVHD is very mild and is responding well to the steroids. I keep reminding myself to be thankful for that and to live in the present, not to worry about what will happen if he has chronic GVHD or gets a more severe form later. This experience is really helping me learn to live day by day and enjoy every moment. I look forward to the day when I will no longer be worried about future test results or GVHD.

Confession: I sometimes give Peter Skittles from his Halloween bag when I give Nathan his pills. Otherwise he tries to take the pills away from Nate.

Nathan's morning meds: 15 1/2 pills, 1 liquid, 1 injection - most people are on A LOT more!

My mom and dad brought Michael and Derek up yesterday. It was great to see them and we have an exciting week planned with the boys. Michael is such a good big brother -and he is BIG! He has grown so much he towers over Nathan and me. He is only 15 and it looks like he still has some growing to do. He keeps holding Peter and even elected to sit in the back seat of the car so he could be with him.

Michael took this picture of Derek and Peter

Michael was as happy to see us as we were to see him. He wasn't able to come up in the summer like the girls did and it has been a long time. He said it made him think about how he is going to have to be away from our family when he goes on a mission.

Tonight Eliza told me all about the Thanksgiving dinner that was held in her kindergarten class. She thought it was amazing! She also didn't want to get off the phone. I loved hearing her cute voice. She is full of spark and I miss her. When I told her we would hopefully be home for Christmas she asked how long we could stay. I tried to explain to her, but I'm not sure if she understood, that, except for follow up appointments, we will be home for good. 

I wish I could spend the first few months of being home doing nothing but holding my little kids and spending time with the older ones. I will need to remind myself not to get busy doing household things and consecrate this time for our family. Nathan will still be recovering and, before he goes back to work, I just want to spend time together. 

Only one more month to go! I don't think I've been this excited to count down until Christmas since I was a little kid!

Days +52 - +61

There isn't much to write. We go to the clinic, Nate has blood draws, transfusions, nutrition appointments, physical therapy, growth factor shots, team meetings...At home he rests while I entertain Peter, pretend to be a nurse administering oral and IV meds and injections, prepare smoothies, and keep up with the clerical aspects of this life. Nothing eventful is happening which is a-okay. It is a wonderful blessing not to be combating challenges.

Nathan's recovery feels so slow but that is the nature of transplants. It's going to take a long time and we just need to be patient.

I am, however, running out of patience with his neutrophil count. It is high time those start getting busy! I love Nathan being cancer free and I want to keep it that way. This particular cancer is very difficult to keep away. Following standard protocol, Nathan has been on immune-suppressants to "lull" his new cells into not being aggressive. This is to prevent them from attacking his body, a condition called GVHD (Graft vs Host Deseise) that can range from annoying to deadly. It is an amazing balancing act. If the donor cells are too aggressive, horrible things can happen but if they are to complacent, the cancer can return.

Nathan was supposed to be starting the slow taper off of this drug last week, but, because he is still experiencing some nausea which could be a sign of GVHD, our new doctor decided not to. Although I know he is an expert in this field (he was one of the original team that pioneered bone marrow transplants), it's hard to have complete faith. At our team meeting this week I want to make sure he is aware that Nathan was not in remission before transplant. Before we were almost sent home GVHD was my biggest fear. Now it's problems with Nathan's body producing white blood cells and cancer returning.

Today I read about a recent study citing successful results of diminished GVHD with the use of cyclophosphamide after transplant. Nathan was the last participant in a study using this protocol and the doctors said they had so far been pleased with the results.  I feel very optimistic and blessed that he was on the trial.

If I listen to my feelings I know everything is going to be okay. I really have no doubt that we are going to go home and life will return to normal. That Nathan will live a long life and this chapter will be closed. I just need to stay away from statistics and not worry.

This last week Megan and Derek stayed with us. It was fabulous to have them here and hard to see them go. Derek and I got to work on a school project. It's something all of the kids have done in second grade. Each time they bring those clothes pins home I'm secretly wondering if we could possibly create something that looks remotely human, let alone from a particular country. Every time I am surprised and it turns out to be a great experience having some one-on-one time.

Nathan has ancestors from Norway and Derek decided to make a Viking. I was impressed by Derek's attention to detail and how meticulous he was in making sure he had the correct amount of facts written on his card and that everything was spelled correctly. I was one proud mom!

Derek also made a great fort on a "rainy day in Seattle," thus following the advice of one of his favorite Recess Monkey songs.

Days +45 - +51

Nathan progresses steadily. He has a little more energy and we are slowly weaning him from anti-nausea meds. We are thankful he can have his IV fluids and meds at home so we don't have to be at the clinic from morning until night. Currently he is hooked up to them for two 6 hour periods - which should be 12 hours apart - and is the reason why I am typing this update in the middle of the night. Just waiting for the last one to finish so I can unhook him and flush his line. Saturday we celebrated day +50; the half way mark between transplant and going home.

Nathan hasn't had to have any transfusions for a while, but his neutrophils are still not making a great come back so he's been getting growth factor shots. So far we aren't aware of any GVHD. Ninety-nine percent of me is amazed by this and rejoices in another miracle, but I'm a little concerned about not having aggressive enough neutrophils to keep the cancer from returning. At the end of this week, Nate's immune-suppressants will start to be decreased so we'll see what happens.

Merian and Eliza are visiting this week. I had forgotten how bouncy Eliza is. She is spunky and full of energy. Merian impressed me by how she diligently worked on her homework early each morning without any prompting. Nathan has been feeling better and, although I know it wears him out afterwards, we have been able to go on walks, let the girls play at the park, and even went to the science center. Thanks to the McShanes, Megan and Derek will be visiting next.

Friday night, since the electricity went out during our dinner prayer, we ate by laptop light. I'm not used to trying to function in darkness and thought about how, through the centuries, and in many parts of the world today, people live without Edison's amazing invention. It made me think of one of my favorite conference stories. Since it is Thanksgiving season, I think it's appropriate to share it. The link to the entire talk is: http://www.lds.org/general-conference/2010/10/the-divine-gift-of-gratitude

When we encounter challenges and problems in our lives, it is often difficult for us to focus on our blessings. However, if we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given.

I share with you an account of one family which was able to find blessings in the midst of serious challenges. This is an account I read many years ago and have kept because of the message it conveys. It was written by Gordon Green and appeared in an American magazine over 50 years ago.

Gordon tells how he grew up on a farm in Canada, where he and his siblings had to hurry home from school while the other children played ball and went swimming. Their father, however, had the capacity to help them understand that their work amounted to something. This was especially true after harvest time when the family celebrated Thanksgiving, for on that day their father gave them a great gift. He took an inventory of everything they had.

On Thanksgiving morning he would take them to the cellar with its barrels of apples, bins of beets, carrots packed in sand, and mountains of sacked potatoes as well as peas, corn, string beans, jellies, strawberries, and other preserves which filled their shelves. He had the children count everything carefully. Then they went out to the barn and figured how many tons of hay there were and how many bushels of grain in the granary. They counted the cows, pigs, chickens, turkeys, and geese. Their father said he wanted to see how they stood, but they knew he really wanted them to realize on that feast day how richly God had blessed them and had smiled upon all their hours of work. Finally, when they sat down to the feast their mother had prepared, the blessings were something they felt.

Gordon indicated, however, that the Thanksgiving he remembered most thankfully was the year they seemed to have nothing for which to be grateful.

The year started off well: they had leftover hay, lots of seed, four litters of pigs, and their father had a little money set aside so that someday he could afford to buy a hay loader—a wonderful machine most farmers just dreamed of owning. It was also the year that electricity came to their town—although not to them because they couldn’t afford it.

One night when Gordon’s mother was doing her big wash, his father stepped in and took his turn over the washboard and asked his wife to rest and do her knitting. He said, “You spend more time doing the wash than sleeping. Do you think we should break down and get electricity?” Although elated at the prospect, she shed a tear or two as she thought of the hay loader that wouldn’t be bought.

So the electrical line went up their lane that year. Although it was nothing fancy, they acquired a washing machine that worked all day by itself and brilliant lightbulbs that dangled from each ceiling. There were no more lamps to fill with oil, no more wicks to cut, no more sooty chimneys to wash. The lamps went quietly off to the attic.

The coming of electricity to their farm was almost the last good thing that happened to them that year. Just as their crops were starting to come through the ground, the rains started. When the water finally receded, there wasn’t a plant left anywhere. They planted again, but more rains beat the crops into the earth. Their potatoes rotted in the mud. They sold a couple of cows and all the pigs and other livestock they had intended to keep, getting very low prices for them because everybody else had to do the same thing. All they harvested that year was a patch of turnips which had somehow weathered the storms.

Then it was Thanksgiving again. Their mother said, “Maybe we’d better forget it this year. We haven’t even got a goose left.”

On Thanksgiving morning, however, Gordon’s father showed up with a jackrabbit and asked his wife to cook it. Grudgingly she started the job, indicating it would take a long time to cook that tough old thing. When it was finally on the table with some of the turnips that had survived, the children refused to eat. Gordon’s mother cried, and then his father did a strange thing. He went up to the attic, got an oil lamp, took it back to the table, and lighted it. He told the children to turn out the electric lights. When there was only the lamp again, they could hardly believe that it had been that dark before. They wondered how they had ever seen anything without the bright lights made possible by electricity.

The food was blessed, and everyone ate. When dinner was over, they all sat quietly. Wrote Gordon:

“In the humble dimness of the old lamp we were beginning to see clearly again. …

“It [was] a lovely meal. The jack rabbit tasted like turkey and the turnips were the mildest we could recall. …

“… [Our] home … , for all its want, was so rich [to] us.” ¹³

The English author Aldous Huxley wrote, “Most human beings have an almost infinite capacity for taking things for granted.” 

Day +39 - +44 REMISSION!!!

Last week Nathan started growth factor shots to stimulate nuetrophpil production and things have gotten noticeably better! His eating is almost back to normal and, although he is still on anti-nausea meds and feels nauseated much of the time, he has kept everything down all week! He has more energy and is visiting a physical therapist to help him regain his strength. His mucositis is almost gone.

The infectious disease department wasn't able to grow anything from his cultures, so we still don't know what was causing Nathan's fevers. He was given a strong antibiotic in the hospital that seems to have taken care of what ever it was. He hasn't had a fever since!

The most exciting part of this week was, on Sunday morning, we learned that the flow cytometry from Nathan's lumbar puncture came back NEGATIVE! No cancer was found.  For the first time in almost a year, Nathan is cancer free. What beautiful, exciting words! I know we still have a ways to go, that we are still waiting to see how Nathan fairs with GVHD and, in Nathan's situation, there is a strong possibility that the cancer could return. For now I'm not going to think about that. I'm going to be thankful and enjoy it. It feels like we are enjoying an enchanting rainbow at the end of a horrible storm. It is so much more fun to report good news!

On Halloween Emma, Norah, Peter and I went trick-or-treating at the clinic, had tons of fun and got way too much candy. This week Emma enjoyed being able to read almost constantly and learned how to juggle. She brought her flute and is sounding amazing for only have been playing for two months.

Mike, Tallia and Kenna brought Merian and Eliza up and took the other two girls home. I'm so glad we live by our family and the kids have Aunts and Uncles to look up to and that love and care for them. It was hard to see them go and I missed them the moment they left.  Tallia told me that on the way home Norah would periodically put up her hand and wave while saying, "goodbye, Mama." I'm glad she still loves me even though I've left her for so long. I've been worried that when I get home the kids won't care about me anymore! Having Norah and Emma here has shown me that it was right to leave the kids at home. There is no way Nathan would get the rest he needs or I'd be able to take care of him properly if everyone was here.

I've learned that one-year-olds have great memories when it comes to those they love. Peter walked right up to Merian and gave her a big hug. He even remembered Uncle Mike and gave him a long love.

Through this experience, I've also learned to be more humble. I like to be independent. I don't like accepting, and I especially hate asking, for help. Even from my family. From the first day Nathan was diagnosed I realized there was no way we could do this alone and that I was going to have to swallow my pride. We have been so very blessed with all of the service given to our family. The hardest part for me has been to accept the fundraisers and donations so generously given to our family. I am floored to know how much work has gone in to them and how giving so many people have been. Part of me wanted to tell everyone we didn't need it, that we would be okay without them, but that wouldn't be the truth - especially since our stay in Seattle has been twice as long as we originally planned. I will never be able to adequately express my thanks for all the fervent prayers, hours of service and generous acts given to our family. I've tried to write thank you notes for all the meals brought and gifts given but I know I don't have a complete list and that it is going to take me forever to get all the ones I do know written. We know that the money given to us is special and if there is any left over after all the bills are paid and we are certain Nathan is in remission we will pass an any that is left to someone who needs it.

Days +32 - +38 Good Test Results!

Nathan slowly improves. It is at such a slow pace, it is hard to measure day by day, but his slight improvements can be seen if we look at things week by week. He has been eating more and throwing up less. When he is awake he is more himself and it has been wonderful to "have him back." We have talked more this week than we have in the last few months combined! It is such a relief and so much fun.

Nathan's counts have been incredibly low. We were lucky to leave the hospital on the day we did. They let us go because he was getting close to having high enough counts for us to leave and they expected them to be there by the next day. If they had kept us one more day we would still be in the hospital since Nathan's neutrophil counts have only been slightly over the 500 mark for one day and have mostly been in the 300's. Thursday he was given a growth factor shot and his nuetrophils rocketed to 2000 but the next day they were back down.

This week Nathan had two re-staging tests; a CT scan and a bone marrow biopsy. The biopsy showed only a very small amount of abnormal cells: 0.003%. One pathologist thought that perhaps these might not even be cancer cells but just immature donor cells! The CT scan showed a significant reduction in tumor size, a lot of which may be scarring. The results from both of these tests are very promising and we (and the doctors) are so pleased/relieved. I am thankful for the prayers that are helping this happen. If there is any cancer left the hope is that Nathan's new immune system will take care of it.

The CT scan also showed very small nodules in his lungs, that are probably nothing but will be monitored, and a blood clot. Because of the clot, we have added blood thinning injections to his morning and night meds and consequently he is needing lots of platelets. This is kind of too bad because platelets were one of his cells that were making a great comeback.

There is one more test that we are anticipating - the lumbar puncture. We NEED this to be cancer free. Cancer cells in Nathan's spinal fluid is why we were going to be sent home without a transplant. He has undergone so much radiation and chemo, I believe it is gone, but if it is not, I'm not sure we have many, if any, options left. The cranium/spinal column is a fairly closed system and the new immune system will not cross the blood brain barrier to clean up any remaining cancer cells. It makes me want to ask, "then how did the cancer cross over? How is a blood cancer surviving in spinal fluid?" The more I learn about the way cancer cells work, the more I am convinced that they are not just poor misguided cells, but pure evil. :-) This procedure was going to happen tomorrow.

It will probably still happen this upcoming week, but Nathan is now in the hospital. He has had a fever all week that would get dangerously high in the evening and climbed higher with each consecutive night. Twice he has had chest x-rays and cultures taken but nothing is showing up. The doctors are baffled as to what is happening so right now he has been admitted to be monitored and receive stronger antibiotics. I know he didn't want to go back in the hospital but I am relived. I dreaded night time and taking his temperature. It's been strange not to be his care giver today. I've gotten used to administering meds, taking temperatures, and hooking him up to hydration. I'm not staying with him in the hospital this time and it is awful to leave him at night.

Sometimes, while we are at the clinic, Nathan and I separate for a few minutes. He'll go to triage on the 6th floor and I'll pick up something at the pharmacy on the 5th. When I meet him, I love to see his smile and hear him say how much he missed me and how glad he is that I am back. It is one of my favorite things. I've sometimes wondered if I made the right decision by coming instead of staying home with the kids. Knowing he wants me here takes away some of the regret of missing out on a half of year of my kids' lives.

Emma and Norah came to visit today! Nathan and I looked forward to it like kids getting ready for Christmas. Peter keeps giving Norah love and they are playing so well together. It felt wonderful to take care of Norah doing Mom type things and to spend time playing and dancing with her. She wasn't talking much when we left in June and now she talks constantly. I love listening to everything she says. Emma spent most of the day in the hospital with Nathan playing games and watching Studio C and Korra. Nathan love it! Norah only got to see Nathan for a short time and she was a bit apprehensive at first. I've gotten used to the way Nathan looks, but to her it must be a little disconcerting. She soon wanted to give him a hug and after we left his hospital room she said she was so sad to leave. Since we are only having two kids visit at a time, the hardest part is deciding which ones can come and wishing we can see them all.

This week we moved into an apartment with a kitchen and washer/dryer! Doing the dishes or laundry has never been so much fun and Peter is able to do one-year-old activities - like empty the pots and pans cupboard to crawl inside or have a battle to see if I can fill the dishwasher before he unloads it.

Sometime I'd like to share some of the things I've thought about during this time but it seems like these posts are always too long after just recording what is happening. I need to learn to be more succinct!

Days +25 - +31 (A Really Quick Update)

Tuesday, Nathan was discharged from the hospital. He says he wants to do everything in his power not to go back.

Nathan is recovering slowly. Our main objective is still to try to get him to eat and have him keep it down. He still isn't drinking, but we are able to give him IV fluids at home so we don't have to spend 8+ hours at the clinic every day. That is a wonderful thing. His counts aren't recovering at any amazing speed. They are still kind of going sideways. Once they start building, he will feel better faster.

We are moving to an apartment closer to the hospital. I have scrubbed and sanitized everything and I think it will be a great place to be for the next ten weeks.

I can't wait to have the kids start to visit. I'm missing being with them for all the Halloween fun!

We have gotten in contact with the church here and that has been a great blessing. We met Stake President Fairbanks and Ann and John Rotham, who are in charge of helping hospital families. They are an amazing couple. We were also visited by our new home teachers yesterday and they brought us the sacrament.

We were invited to have dinner with Richard and Zonthiry Johnson. It's always fun to see them!

Nathan had a bone and bone marrow biopsy. Today he will have a CT scan and soon a lumbar puncture.  Since the doctors don't expect Nathan to be cancer free, I don't look forward to the results of these tests. I feel certain Nathan will get better, but if the results aren't great, it just means a longer road and Nathan and I are both ready for our lives to get back to normal.

Meanwhile, back at home...

I love that Megan sends me e-mails, like these ones, with glimpses into life at home.

Today in cross country I ran 8 miles. It was a very windy day and after a weekend of watching conference, eating cinnamon rolls, and visiting Aunt Erin to see her new baby, somehow, I loved it. It felt amazing! There have been times when I run when I feel...completely in pain and wiped out and can't fathom how it can all be worth it. But there are also times when it feels exhilarating and I can go fast forever and forever without a thought of any possible pain. Cross country has been a blessing. 

Emma helped Marian with her math homework this evening. She made it fun for her by impersonating the chief of of Psych and treating each problem like solving a case. It was pretty funny. One of my favorite lines that she used was "innocent citizens are dying."  

Michael also helped Derek with his homework and made it fun for him.

Eliza read the word "ranch" during our reading time today. I asked if she knew what it meant, and then I told her it was kind of like a farm. Then she said, "a cilantro ranch?" It was so cute because the way she pronounces "cilantro" sounds kind of like "ranch" in the middle!

I gave attention to Norah today when I played Killer Bunnies with Michael. I could tell she wanted attention, so I started to talk to her, trying to engage her in conversation, but then she plugged her nose and made weird noises. I copied her and she laughed. I also sang her songs, changing the words to her name. (Example: "How do you solve a problem like my Norah?")The first thing Norah said this morning was "Mommy." But she's doing great! I got her out of bed, and she was a happy camper. 

When I see pictures of the kids they look so much older. How can it be that I can miss out on six months of their lives?