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!

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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!

Days +4 - +10

"I just don't feel like myself," Nathan has remarked. The idea behind a stem cell transplant is to give lethal doses of radiation and chemo, killing the original bone marrow and blood cells to make way for the donor cells. For several days now, Nathan's white blood cell count has been zero. Were it not for daily transfusions of red blood cells and platelets, their counts would be the same. So, since all of his blood cells are gone, and everything in him is from donors, in a way, he's not really himself. Weird, huh? Think of it like a bizarre sci-fi movie. Or maybe like that horrid zombie show Nate likes to watch. Essentially, he's one of the walking dead.

There's not much to say for this week. Nathan sleeps and rests. He has mouth sores and we are constantly experimenting with medication to keep nausea and pain at bay. He hasn't eaten in days. He sometimes gets fevers. His IV pole has more bags than I have every seen: transfusions, hydration, TPN (intravenous nutrition), antibiotics, antibacterial, antifungle...Still, he is doing much, much better than most people who go through transplant. Everyone is amazed at how well he looks. Most days we even make it on a walk for a few laps around the 8th floor.

My biggest challenge is trying to figure out what Nathan needs. I'm getting better at realizing when he needs more meds just by looking at him. When I was pregnant with Norah, I was so sick, I remember wishing someone would pick me up and take me to the hospital but I didn't have the ability to ask. That is where Nathan is at a lot of the times. He's wiped out from all he's been through and the medications make it so he's in and out of consciousness. Even when he is with it, because of his mouth sores, he doesn't talk.  I try to pay close attention to him to be able to assess and call for more pain or nausea medicine. If we don't stay on top of it, it's not a good thing.

While we were preparing for transplant, doctors and transplant survivors told me they didn't think it was a good idea to have Peter with us. I didn't really worry because I have eight children and I've home schooled. This should feel like a vacation! Taking care of Nathan and entertaining Peter are both full time jobs. In June, I brought several books with me and haven't even opened one.

Still, I'm glad we have Peter. He makes Nathan happy. Earlier in the week I congratulated Nathan for keeping down his protein shake and Peter clapped for him. Everyone on the floor enjoys him. One night, Peter was practicing walking in the halls when he saw a man, about Nathan's height and build, bald with a beard and glasses, same hospital pj's as Nate, pushing an IV pole, like Nate, walking too. He kept trying to catch up to him and I figured out Peter thought he was Nate. When the man would see Peter he would wave to him and Peter would try harder. When we finally got close enough and Peter saw he wasn't his Dad he clung to my legs and buried his head. He loves Nathan so much. I love watching them give each other hugs.

Peter and I try to get out for a walk everyday while Nathan sleeps. The University of Washington campus is gorgeous. I love it. Sometimes I hear the marching band practice and it reminds me of being at BYU. I've also found some really neat nature trails and romantic old neighborhoods.

Today is Day +10. Any day now we will see signs of engraftment. Any day now Nate's counts will start to go up and he will start to feel better. Day +10; 90 more to go.


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I wrote that last night to post today (Sunday).

This morning Nathan has done so much better. He woke up, didn't throw up, showered, took a walk, and stayed awake for several hours. He's even wearing his glasses and talking about maybe eating something later!

Nathan's neutrophil count is still zero, but Dr. Martin said maybe all the white blood cells were busy repairing his body instead of circulating through his veins.

The average hospital stay for this procedure is four to six weeks but Nathan has handled it so well, there is a chance he could be discharged at the end of the week!

Transplant Week (Spetember 16-22) Days -3 through +3

Monday, Tuesday, and Wednesday, Nathan received morning and afternoon total body radiation. We were told that if we decided to go through with the transplant, Nathan would be given the highest doses of radiation and chemo possible in order to give him the best chance of getting rid of the cancer. From past experience, we expected radiation to be harder than chemo, but I was not prepared for how quickly it would take effect. Immediately after the treatment Nathan lost his breakfast and within an hour his pillow was covered with all his newly regrown hairs. Wednesday was especially hard because he had surgery to place a new central line. (The Power Port he had placed in February is single lumen and subcutaneous.) If the treatment is this powerful, it just has to kill the cancer cells too, right?

Getting ready for TBI (Total Body Irradiation)

 

Nathan's days consist of resting, drinking water, rinsing with salt water for mucucitis, and walking around the halls. He's already logged six miles! He always does the best he can.

Last Friday, before we went home, we met with the doctor and nurse for Nathan to sign permission papers. Of course, the doctor has to tell how awful it will be and all the risks involved. I thought it was pointless. What other choice do we have? After he left, our nurse, who has been with us from the beginning, talked to us. She told Nathan not to think about the odds. Even if it's only a one in 100 chance, he could be that one. She told him to stay positive and to keep walking. It was so nice to hear her caring words and concern. It felt like she was giving advice before sending us off into battle and we both gave her hugs as we left the room.

Wednesday, Jarom's cells were harvested. He said it wasn't that bad. It's kind of like giving blood, but I can imagine it can be a little worrisome for a 16 year old. I'm glad it turned out to be an okay experience for him and I am so thankful for his courage and willingness to undergo this procedure to save Nathan's life.

Thursday was Nathan's "re-birthday." He has been exhausted from the radiation and surgery so he slept most of the day. Before the transplant he was given a large dose of Benadryl to prevent an allergic reaction, so he pretty much slept through the whole transplant. Jarom and Valerie came. The cells looked like water down tomato paste and we could see them move through the IV line. It was pretty cool. 

A transplant is basically just like any other transfusion and most people are disappointed by how unmomentus the occasion is. I prepared myself to feel like it wasn't a big deal, but I felt so excited watching those cells enter Nathan's body and imagining them saving his life. I felt such gratitude for Jarom. In a year from now we will have a huge "re-birthday" party to celebrate with everyone who has helped us get through this time.

Peter has been walking short distances, but during the transplant he just took off. He's decided he'd rather be vertical than horizontal and practices every chance he gets.

Friday, Peter turned one! Our nurse gave him a box of Kleenexes for his birthday so he could have fun pulling them out one by one. Nurses are such amazing people! What a year it has been for him. He started rolling over at Kadlec and is learning to walk at the SCCA and UW Medical Center. He is so interested in everything that is going on. Maybe he will be a doctor! 

Passing the cells from Jarom to Nathan.