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!
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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
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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!
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