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?

Days +18 - + 24

It's a big surprise to us that we are still in the hospital, but Nathan's counts have been going sideways all week. His neutrophil count needs to be at 500 before he can be released and it has been hanging out around 150. Tomorrow we hope to get the results of a test that will tell us the ratio of his original cells to his new donated cells.

Nathan feels a little better each day and he has managed to increase the amount of laps he walks. It is the best thing he can do to keep his lungs clear of fluid. One doctor told him he has the clearest sounding lungs on the floor. Peter loves to go outside our room and get attention from all the nurses. His favorite thing to do is to hold both of our hands. That can sometimes be slow when he decides to stop and check out every outlet or try to climb on the equipment that lines the hallways so I put him in the baby backpack after a lap or so. Even when he is in the backpack, he reaches over to Nathan's arm, pulls up his hand to hold, and then smiles contently. If I'm trying to hold Nathan's hand as well, he pries it off. That is his dad.

It's hard to get a picture of them holding hands while Peter's in the backpack, but is sure is cute!

Today Nathan was able to have some free time from his IV pole! He spent it playing with Peter on the play mat.

Our main objective lately has been to control nausea and try to get Nathan to eat (and then keep it down). He is off of TPN (yeah!) but still isn't eating much at all. I have a feeling when he is released the majority of my day will be spent trying to find things to feed him.

Nathan is taking the most of his meds orally instead of by IV. He hates doing it. There are a LOT of pills and some are huge and make him gag, which usually means he loses what he worked so hard to eat. Our nurse last night brought in a secret weapon: chocolate milk. It is Nathan's new favorite way to get those babies down.

Eating and taking meds orally are two very important steps in moving towards discharge. It's hard to believe we've lived in the hospital for almost a month! Once we are out we are going to be vigilant in our efforts to stay out. It hasn't been easy for Nathan to be cooped up and not feeling well for so long, but he has taken it in stride. On the last day of Dr. Martin's rotation he told Nathan he was something special with how he was able to handle all this. I know we are blessed by many prayers. It hasn't been fun or easy, but he's had relatively few complications and with the exception of those darn counts, he's recovering well.

Nathan is in much better shape than he was even a week ago. He can't remember all the funny things he did when he was out of it. Once a nurse asked if he had a port (the internal catheter) and he told her he got it on a scout camp out when he was twelve. Then he snickered, thinking it was funny. :-)

Peter is such a flirt. He loves to explore the hallways and is always trying to leave the room with whoever comes in. He'll take the nurse,or whoever, by the hand and start walking to the door. Sometimes I'll take him for a walk and he'll get a nurse for each hand, give them a sweet look, and they walk him down the hallway. I've never had to worry about my kids with strangers because they would only let me hold them, but he knows everyone loves him and is very trusting. I think he will be our friendliest and most outgoing child - or the most narcissistic. Although it is a lot of work, it is great to have him here. He snuggles with Nathan and claps for him when he eats.

Peter and I made a fort. Before we did, I wasn't sure he was old enough to appreciate it but he LOVED it. We read books inside and it kept us quiet while Nathan napped.

One of the problems with making friends here is when they come to tell you they are being sent home because there is nothing more that can be done.  Cancer makes me feel so vulnerable and powerless, but I am also blown away with the kindness and generosity I see on a daily basis. Everyone here is in probably the worse time of there lives and yet I see constant acts and offers of service and friendship.

Our room overlooks the Montlake Cut.

Peter's play space with decorations from Kim. 

We miss our kids and look at these pictures all the time.

I feel like the three bears: a Papa bed, a Mamma bed, and a Baby bed.

Peter likes to help me keep his mat clean.

Look! I can juggle!

Game days are exciting. I sometimes crowd watch with binoculars.

Boats lining up for the game.

I can't figure out what they are building on Lake Washington. 

Days +11 - +17

Still no engraftment. It's been a discouraging week. After Nathan was feeling better last Sunday, we thought for sure his new cells had grafted. Dr. Martin guessed we'd be out of the hospital by Thursday, but everyday Nathan's condition does not improve and the lab work comes back with a zero white blood cell count.

We've been told it's not time to worry until day +21, but Nathan is tired of feeling worn out and being stuck in the hospital. I'm tired of trying to get him to eat and take his meds! It's a delicate balance of coercion, reverse psychology, and reasoning. :-) I know that once his cell counts begin to rise and he feels better this won't be an issue. He really has been awesome throughout all this. Dr. Martin is so impressed how he takes it all in stride.

Two PA's have told us it isn't a surprise it has taken so long for engraftment since Nathan received the highest doses of radiation and chemo. This is what was needed to have a chance to kill the cancer in his spinal fluid. Now it is time for the new immune system to take over and finish the job!

Megan and I were talking today about how peaceful we feel. I really should be more worried, but I'm not. I know we are blessed by everyone's prayers.

Megan also told me she overheard Derek's reasons why home school is better than "normal school." I'm always sure it's because they think home school is easier, but he said it was because at home school he gets to spend more time with Mom. We sure do miss our kiddos! 17 days down, 83 more to go!

***********

After I wrote this we were told Nathan had white blood cells! 120 to be exact. The lowest range of detectability is 110. Nathan lucked out because Dr. Martin admitted that if they didn't show up he was going to order a bone marrow aspiration. (Sigh of relief.) It was easy to see the doctors were relieved as well.

Nathan has not needed a transfusion for a few days. I'm guessing that means he is also producing red blood cells and platelets! Looking forward to a much better week!