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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Weekly Update

I am staring in the face of two conflicting goals. One, to always get to bed by 10:30, two, to write a blog post every Sunday. It's 10:29. I'd better be quick!

It's strange for me to be back. I can't believe it's only been a week. It feels like forever ago that I left home.

Nathan continued to have radiation this week. It really takes a lot out of him. He walks into the room looking fine and walks out looking like a zombie. Imagine being outside in the sun all day. All that radiation just drains a person. It's like getting more than a day's worth of sun in only a few minutes.

Nathan said he feels like Wesley, from The Princess Bride, when he was being tortured. He feels like the technician should say, "I just sucked one year of your life..."

After radiation, Nathan rests and sleeps the rest of the day. I'm glad his appointments are in the afternoon so that he gets a little time in the mornings. He's been able to rest this weekend and gets to start all over again tomorrow, poor guy. Three more days, then, if all goes well, he will get time off until next week when he will start total body radiation in preparation for transplant.

Megan has decided to go out for cross country! I hope she can get in and that is not too late in the season. There is a long story that goes along with this, but for now I will just say I am so proud of her great attitude.

Michael went into surgery to get pins in his wrist on Tuesday morning. I wish I could have been there, but he called me before and after the surgery. Since he won't get his cast until Monday afternoon, he has been able to stay home from school and has told me he's still able to use a video game controller by using his chin - just like he did last time he broke that arm and had to have surgery on it.

Emma is excited to have friends in her classes and is loving band. I'm excited that one of my kids is and I think she will quickly catch onto playing the flute. I love talking to her on the phone and hearing about her day. It's one of the things I missed when we started homeschooling.

Merain has a great teacher who has called me to let me know that she is doing wonderfully at school. Merian is having a lot of fun in Mrs. Little's class too and is planning on playing the trumpet. I think she will look so cute! I miss her hugs and hearing her tell me that I'm the best mom ever!

Derek has started soccer. He was so excited to do that since Brennan, Asher and Ethan all play soccer. I hope he is having fun and I wish I could be at his games.

Eliza is in Kindergarten. I'm sure she is doing great and is loving it.

Norah seems to be happy when I hear her laughing in the background as I talk to the other kids. I can't believe how much older she sounds each time I talk to her.

It is hard to talk on the phone the Derek, Eliza and Norah. Derek get's easily distracted, Eliza keeps asking "what?" and Norah just doesn't get it. I don't think it seems real to her. Tomorrow we are going to get on Skype for family night and I can't wait to talk to each one of the kids.

They are all doing so great. It is such a blessing to know that they are happy and having a great time where they are. I hate being apart, but I know this is the best situation for everybody.

Peter is standing up really well and can take a step or two. Nathan's transplant is scheduled for the day before his birthday so it looks like he will be turning one in the hospital. I think he misses the kids too. He smiles when I show him pictures. He gets lots of attention from strangers. His first words might be, "look at that curly hair!"

So, there's a quick catch up. It's about all I know from being gone! :-)

Sunday Update

I've decided to do weekly recaps to somewhat keep this journey organized.

This week Nathan's dad stayed with him up at Seattle while I stayed home to take Michael to his doctor's appointment and spend some time with the kids for their first week of school.

Nathan started radiation. On Friday his dad dropped him off in Ellensburg on his way home and I took Nathan home for the weekend. It has meant that I've been able to spend more time at home and I have loved it. Poor Nathan has slept all weekend. It looks like radiation is going to be harder than chemo, which is too bad because there is a lot more of it to go through. Hopefully it is just because Nathan was worn out from entertaining his dad for a week and because he used his anti-nausea meds so sparingly. I've been trying to get him on a good schedule of alternating meds so hopefully with that and all the sleep he can get ahead of the nausea and have a better week.

The transplant team said they were very pleased with the results from his last round of tests and are starting to make plans to start the transplant. With any luck we could be back a few days after Christmas! I wish our doc here would have followed their recommendation and used that chemo regimen all along. 

Two more weeks of cranial/spinal radiation and then on to total body radiation to prepare for transplant. Not looking forward to this, but it's good to be moving forward.

On Monday, Michael saw the orthopedic surgeon and his x-rays showed that the bone had moved back and was displaced again. Mike says he's not in pain, but I think he's just being tough as he's asked for pain medication all week. Usually, once a cast is on, my kids have never needed anything. Michael will go in this week for more x-rays and to see if he will need surgery.

I have LOVED being home with the kids for a week. It was weird because as we went through our new schedules I would think of how I'd do things differently next week and I'd have to keep reminding myself that I wasn't going to be here next week. 

I'm not looking forward to going back tomorrow but I know the kids are in good hands. They are doing very well. They are happy and helping each other out. I hate missing out on this time with them, but it will pass and we will be a family again soon.

I think I'm a much better mom than I am wife. It's a good thing I have four months to practice!