Today we came home!
Because the results from Nathan's biopsy weren't yet available, our appointment was delayed until the team decided what to do with us. After looking Nathan over they decided to let us go and even rescheduled our Thursday appointments for Friday so we could have another day at home! We also got the best news. The latest PET scan showed the tumors were shrinking! It is so nice to be nearing the end of cancer!
After we got over the slushy pass the roads were clear and as soon as we drove into the garage the kids rushed out to meet us. I got the biggest hug ever from Eliza and Nathan had Norah. It was awesome! We were welcomed home to a sparkly clean house, beautiful poinsettias from friends, and within minutes of being there, a large group from our ward came caroling. Even though we were late getting home, the kids had waited to eat dinner. The table was set and my mom had prepared a yummy roast. (I think that was probably Michael's idea. :-) ) It was late but we didn't eat for awhile. The kids showed us the new songs they had learned on the piano and other instruments and Norah danced for us. Peter had a great time exploring the house and being with Michael. It was such an exciting, happy time and I thought this must be a little what it is like when we join our loved ones in heaven.
Once, when I went out to the car to get Peter's pajamas Norah cried out, "Mom! Don't go yet!" Poor girl. We are definitely taking her back to Seattle with us.
Before bed I rocked each of the kids, and tucked them in. The four youngest made beds on our bedroom floor and are sleeping there. Emma even came to sit on my lap, but when it was Michael's turn, I sat on his lap since he is so much bigger than me.
After everyone was asleep and I had given Nathan his night time meds, I walked through each room of the house and thought about how lucky I am. Before I saw every scuff mark and flaw but now I realized how beautiful my house is. When I looked through my room, it felt like opening a time capsule, since it has been nearly undisturbed since I left it six months ago. I loved spending time in the school room. It made me remember all the time I have spent there with the kids, especially teaching Eliza and Derek last year. Since we are not homeschooling, the kids have been using it as a craft room and I got to see their latest creations. I had forgotten our kitchen faucet broke before we left and we replaced it with a pretty one! My mom and dad installed shelves in the laundry room and it is amazing!
I am so very lucky. I think this has been the happiest day of my life. I also think my bed has never felt so comfortable!
********************
It's the next morning, but I wanted to add that Eliza climbed into bed with us twice and Derek tried to once. I wish we had a king sized bed so they could have stayed there!
Tuesday, December 24, 2013
Sunday, December 22, 2013
Days +89 - +94
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.
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.
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
 |
| Derek's birthday cake. It turns out QFC has really good cupcakes. |
 |
| Nate's favorite plane SR71 |
 |
| Hang gliding fight simulator |
 |
| Space shuttle and Hubble telescope |
 |
| Michael took a lot of good pictures. I'm impressed he got this one. |
 |
| 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.
 |
| Nathan's morning meds: 15 1/2 pills, 1 liquid, 1 injection - most people are on A LOT more! |
 |
| 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.
Sunday, November 10, 2013
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
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.”
Monday, November 4, 2013
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.
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.
Monday, October 28, 2013
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!
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!
Monday, October 21, 2013
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.
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.
Wednesday, October 16, 2013
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?
Sunday, October 13, 2013
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.
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. |
Sunday, October 6, 2013
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!
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!
Sunday, September 29, 2013
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.
********
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!
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.
********
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!
Friday, September 27, 2013
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. |
Subscribe to:
Posts (Atom)