The good news is we get to go a day early. The bad news it we have to come back the day after Christmas. Hopefully it won't be for too long. We plan on bringing Norah back with us. We'd love to bring more of the kids, but just in case we get stuck up here we don't want to chance them having to miss school. I was really looking forward to being with them for Christmas break. While we are ready to be done with this chapter, we are okay with not being discharged until we have everything under control. SCCA docs are the experts in this field and we trust them. We are hoping Nathan is just a little behind since his cells came in so slowly and it won't take long before we can leave for good - or at least until his one year follow up. Gosh, I like the sound of that!
Seattle has been our home for six months now and our real home seems like a dream. I lay awake last night thinking that soon I will be sleeping in my own bed. As I drove down Mercer the other day I thought how strange it was that it felt as natural as going on Columbia Center Boulevard.
Nathan is still not feeling too great but we hope for improvement soon! Last week he had a PET scan and another endoscopy with biopsy to check for GVHD. We are eagerly awaiting the results and hoping it doesn't prevent us from going home.
Sunday, December 22, 2013
Tuesday, December 17, 2013
Days +81 - +87
It looks like we will get our Christmas wish! We are still scheduled to be discharged on the 24th. I can't think of a better Christmas present than to go home and be a complete family again. I wonder what Peter will think. He will have so many new toys and siblings to entertain him he will cease to spend his days climbing up on the table or emptying drawers, right? It's strange to think how much he has grown up. He was just a baby when we came and now he is a toddler. I keep thinking the kids that I am going back home to aren't exactly the same kids in the pictures I look at daily. They have had experiences, like going back to public school, without me. Before we left I had planned on keeping in better touch, but it didn't work out. I look forward to getting to know them all and seeing how much they have grown during this time.
We only have a week and a half left! Most of me is so excited and can't wait. A small part of me is going to miss the security of having the SCCA and our team just a phone call away. Also, I've only had to take care of Nathan, Peter and a little apartment for so long. It's going to be an adjustment to be part of a busy household again!
After a week of feeling well, Nathan started getting sick again so he is back on Prednisone. Nathan's immune system is already so weak from the transplant and he is on immune suppressant drugs to minimize Graft vs Host Disease. When Nathan caught a cold, it revved up his immune system which triggered more GVHD. Which means he's on more immune suppressants and more susceptible to sickness and infections. It is a vicious circle and it has made me see how important it is that we somehow keep him well after we go home. I'm not sure how to do it with the kids going to public school and church. I briefly thought about homeschooling, but I know I wouldn't be able to do a good job and still take care of Nathan.
This week Nathan had a bone marrow and skin biopsy as well as a lumbar puncture with chemo. We look forward to learning the results this week and hearing that he is still cancer free. It is always such a relief to hear that the tests came back negative.
Since the beginning this has been my plan:
1. Do chemo
2. Have Transplant
3. Live Happily Ever After
Most of the time I think we are almost to step three, although I now know it's going to take a while before Nathan is feeling up to speed. My heart is filled with excitement that we got our miracle and I want to jump up and down with joy because everything is going to be okay. But then, this week I learned of three people I know passing away. It's Christmas! Families should not be without their fathers or mothers. Mothers should not be missing their little girls. My heart aches for these families. After going through chemo and a transplant they still lost their loved one. They did everything they could, but in the end, it's just luck. It's scary.
I wonder if I am naive. I begin to wonder if it is even possible - does anyone with a blood cancer survive? Is long term remission possible? Will I be unprepared if things don't work out like we want them to? I wonder if I should be more realistic, but I've learned it doesn't do any good to worry. Winston Churchill said, "I am an optimist. It does not seem too much use being anything else." Walt Disney said, "Why Worry? If you've done the very best you can, worrying won't make it any better."
Faith conquers fear. Since the beginning I've felt that this is part of Heavenly Father's plan and that everything is going to be okay. No matter what happens I need to remember that. I'll also remember the promises given in priesthood blessings that miracles can happen and that Nathan will live a long life.
If faith is the remedy for fear, hope should replace worry. We are blessed with many medical advances, so even if we are unlucky enough to have the cancer return, there is still hope. Why waste my time with worry? My seminary teacher would joke it's okay to procrastinate sin. He would tease that we should just keep putting it off. I think I'll procrastinate worrying. I will not waste time thinking about the what if's. I will live in the moment and enjoy each one.
********************
I waited to post this until we had the results of the last biopsy/lp. Both came back negative!!! This week Nathan will have a PET scan to measure the tumors and cancer cell activity.
We only have a week and a half left! Most of me is so excited and can't wait. A small part of me is going to miss the security of having the SCCA and our team just a phone call away. Also, I've only had to take care of Nathan, Peter and a little apartment for so long. It's going to be an adjustment to be part of a busy household again!
After a week of feeling well, Nathan started getting sick again so he is back on Prednisone. Nathan's immune system is already so weak from the transplant and he is on immune suppressant drugs to minimize Graft vs Host Disease. When Nathan caught a cold, it revved up his immune system which triggered more GVHD. Which means he's on more immune suppressants and more susceptible to sickness and infections. It is a vicious circle and it has made me see how important it is that we somehow keep him well after we go home. I'm not sure how to do it with the kids going to public school and church. I briefly thought about homeschooling, but I know I wouldn't be able to do a good job and still take care of Nathan.
This week Nathan had a bone marrow and skin biopsy as well as a lumbar puncture with chemo. We look forward to learning the results this week and hearing that he is still cancer free. It is always such a relief to hear that the tests came back negative.
Since the beginning this has been my plan:
1. Do chemo
2. Have Transplant
3. Live Happily Ever After
Most of the time I think we are almost to step three, although I now know it's going to take a while before Nathan is feeling up to speed. My heart is filled with excitement that we got our miracle and I want to jump up and down with joy because everything is going to be okay. But then, this week I learned of three people I know passing away. It's Christmas! Families should not be without their fathers or mothers. Mothers should not be missing their little girls. My heart aches for these families. After going through chemo and a transplant they still lost their loved one. They did everything they could, but in the end, it's just luck. It's scary.
I wonder if I am naive. I begin to wonder if it is even possible - does anyone with a blood cancer survive? Is long term remission possible? Will I be unprepared if things don't work out like we want them to? I wonder if I should be more realistic, but I've learned it doesn't do any good to worry. Winston Churchill said, "I am an optimist. It does not seem too much use being anything else." Walt Disney said, "Why Worry? If you've done the very best you can, worrying won't make it any better."
Faith conquers fear. Since the beginning I've felt that this is part of Heavenly Father's plan and that everything is going to be okay. No matter what happens I need to remember that. I'll also remember the promises given in priesthood blessings that miracles can happen and that Nathan will live a long life.
If faith is the remedy for fear, hope should replace worry. We are blessed with many medical advances, so even if we are unlucky enough to have the cancer return, there is still hope. Why waste my time with worry? My seminary teacher would joke it's okay to procrastinate sin. He would tease that we should just keep putting it off. I think I'll procrastinate worrying. I will not waste time thinking about the what if's. I will live in the moment and enjoy each one.
********************
I waited to post this until we had the results of the last biopsy/lp. Both came back negative!!! This week Nathan will have a PET scan to measure the tumors and cancer cell activity.
Sunday, December 8, 2013
Days +75 - +80
This week was full of great news. On Monday, we celebrated day +75. Three-fourths of the way to day +100! Also on Monday, Nathan had another lumbar puncture with chemo. That was not a good experience. For some reason they had a tough time getting in and three different doctors had to try several times. Poor Nathan. He ended up throwing up afterwards and had a spinal headache for a few days. But on Tuesday, we learned that his spinal fluid is still cancer free!!! Wednesday we found out that his counts have been steadily climbing and on Thursday our team told us they are doing everything they can to get us home early - on Christmas Eve! It will be the most amazing Christmas ever!
Since Nathan is now producing blood cells on his own, he doesn't have to go in for daily blood draws. Saturday was the first day since September 16th that he has not had to be in the hospital or clinic. It has been a nice relaxing weekend. In fact, Nathan and Peter are both asleep right now. I feel like this is the first time in 17 years that I've had some alone, quiet time!
Nathan was tapered off Prednisone this week, and unfortunately he's starting to not feel too great again. I hope it's not more GVHD.
Even though we are so close to going home, I can't help but feel more and more homesick. Megan has been so sweet and has sent us pictures and a video of the kids decorating the Christmas tree. (Peter loved watching it over and over. He's going to be amazed to see all of his brothers and sisters at once!) To help time go by, Nathan, Peter and I had a family night where we borrowed Peter's crayons and made our own advent calender. I think it helps to count down the days and keep us busy with some fun activities, not just medical stuff. So far my favorite thing we have done was to teach Peter "Once there was a Snowman." It is awesome to watch him dance to it and he thinks it's hilarious when I fall to the floor. The activity I'm most looking forward to, and the most nervous about, is making Christmas bags for some of the homeless people we see on a regular basis.
Since Nathan is now producing blood cells on his own, he doesn't have to go in for daily blood draws. Saturday was the first day since September 16th that he has not had to be in the hospital or clinic. It has been a nice relaxing weekend. In fact, Nathan and Peter are both asleep right now. I feel like this is the first time in 17 years that I've had some alone, quiet time!
Nathan was tapered off Prednisone this week, and unfortunately he's starting to not feel too great again. I hope it's not more GVHD.
Even though we are so close to going home, I can't help but feel more and more homesick. Megan has been so sweet and has sent us pictures and a video of the kids decorating the Christmas tree. (Peter loved watching it over and over. He's going to be amazed to see all of his brothers and sisters at once!) To help time go by, Nathan, Peter and I had a family night where we borrowed Peter's crayons and made our own advent calender. I think it helps to count down the days and keep us busy with some fun activities, not just medical stuff. So far my favorite thing we have done was to teach Peter "Once there was a Snowman." It is awesome to watch him dance to it and he thinks it's hilarious when I fall to the floor. The activity I'm most looking forward to, and the most nervous about, is making Christmas bags for some of the homeless people we see on a regular basis.
Tuesday, December 3, 2013
If a picture is worth a thousand words....this is the longest post I've ever writen
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| Derek's birthday cake. It turns out QFC has really good cupcakes. |
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| Nate's favorite plane SR71 |
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| Hang gliding fight simulator |
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| Space shuttle and Hubble telescope |
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| Michael took a lot of good pictures. I'm impressed he got this one. |
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| UW had sheep cleaning up the bramble at the park. |
Sunday, December 1, 2013
Days +67 - +73
Nathan is feeling much better since he was put on two different steroids to help heal his digestive tract and calm the new cells. He has more energy, the nausea is gone and and he has a much better appetite. Just in time for Thanksgiving, his taste buds recovered. This means every time he eats something he spends the next two hours talking about how good it tasted. His eyebrows and facial hair are really coming back. He's still waiting to see how much he'll have on top, though. His nuetrophil count has been steady. It's hovering above 1,000 so he hasn't had to have a growth factor shot in more than a week! He also had a transfusion this week, but those have been getting less frequent.
One hundred days falls four days after Christmas. If he keeps doing well, I don't see any reason why we shouldn't be able to go home on Christmas Eve. It's awesome to be counting down the days!
The boys came to visit this week. We went to the Museum of Flight, they played games with Nate and Derek and I went on a walk. (I'll have to add pictures later.) It's fun to spend time with just one or two kids. It is something I always meant to do more of and I'm going to work harder on that when we get home.
Unfortunately, Michael came with a little cold which Nathan, Peter and I have caught. I'm not sure how this is going to effect things....we'll just have to get better quick!
We had a great Thanksgiving dinner at our Home Teacher's house and it wasn't hard to think of things to be thankful for.
Derek's birthday was on Thanksgiving and he thought that was pretty neat. He wanted a turkey cake, but luckily he was okay with turkey cupcakes from QFC. Megan also made a cake and had it waiting for him when he got home.
This week Nathan will start a series of four bi-weekly intrathecal (administered through a lumbar puncture) chemotherapy treatments to prevent the return of cancer to his CSF (cerebral spinal fluid.) His brain has been through so much I hate to see him have to do more but cancer in the spinal fluid is a very bad thing so we don't want to take any chances.
I think I figured out why the doctors seem more concerned with GVHD (graft-vs-host disease) than hoping for GVT (graft-vs-tumor.) From what I've read online, GVT works well with leukemias, but the jury is still out with lymphomas. There really isn't a lot of clinical evidence to support that it works. That is probably why Nathan's pre-conditioning was so tough, to eliminate all of the cancer and not count on GVT.
I did read one study that supported some GVT success and then I noticed it was written by Dr. Malloney, the leading Lymphoma expert at Fred Hutchingson and the doctor that first spoke to us in March. I feel so lucky that we are at one of the leading centers for BMSCT (bone marrow stem cell transplants) in the world!
One hundred days falls four days after Christmas. If he keeps doing well, I don't see any reason why we shouldn't be able to go home on Christmas Eve. It's awesome to be counting down the days!
The boys came to visit this week. We went to the Museum of Flight, they played games with Nate and Derek and I went on a walk. (I'll have to add pictures later.) It's fun to spend time with just one or two kids. It is something I always meant to do more of and I'm going to work harder on that when we get home.
Unfortunately, Michael came with a little cold which Nathan, Peter and I have caught. I'm not sure how this is going to effect things....we'll just have to get better quick!
We had a great Thanksgiving dinner at our Home Teacher's house and it wasn't hard to think of things to be thankful for.
Derek's birthday was on Thanksgiving and he thought that was pretty neat. He wanted a turkey cake, but luckily he was okay with turkey cupcakes from QFC. Megan also made a cake and had it waiting for him when he got home.
This week Nathan will start a series of four bi-weekly intrathecal (administered through a lumbar puncture) chemotherapy treatments to prevent the return of cancer to his CSF (cerebral spinal fluid.) His brain has been through so much I hate to see him have to do more but cancer in the spinal fluid is a very bad thing so we don't want to take any chances.
I think I figured out why the doctors seem more concerned with GVHD (graft-vs-host disease) than hoping for GVT (graft-vs-tumor.) From what I've read online, GVT works well with leukemias, but the jury is still out with lymphomas. There really isn't a lot of clinical evidence to support that it works. That is probably why Nathan's pre-conditioning was so tough, to eliminate all of the cancer and not count on GVT.
I did read one study that supported some GVT success and then I noticed it was written by Dr. Malloney, the leading Lymphoma expert at Fred Hutchingson and the doctor that first spoke to us in March. I feel so lucky that we are at one of the leading centers for BMSCT (bone marrow stem cell transplants) in the world!
Sunday, November 24, 2013
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.
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 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.
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.
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| Nathan's morning meds: 15 1/2 pills, 1 liquid, 1 injection - most people are on A LOT more! |
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| Michael took this picture of Derek and Peter |
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.
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.
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