I just got off the phone with my mom. She told me about how she told the kids that after she got back from dropping off books at the library they would clean the house. When she got home Eliza surprised her by cleaning the whole downstairs by herself! I love that girl! I miss her so much!
Megan sent me some pictures of the kids. We soaked them in. We've been away for so long and I just want to hold them!
Megan told me that Eliza and Norah were so sweet and were always holding hands. Before they left I asked Eliza to keep an eye on Norah and I guess she did a terrific job. It is such a blessing that our kids are such good friends. I know they are looking out for each other and they are not lonely. I would worry that they don't even miss us, but when we are home they like to make up for all the snuggling we've missed out on so I know that they do. I'm happy that they are happy when we are gone. It has been a surprise to me and great blessing that being apart is bearable and I feel it is a product of many prayers.
Nathan was discharged from the hospital yesterday (Friday) and we spent today at the clinic for infusions. We will be back tomorrow, and the next day, and the next day...until they are satisfied he is in good enough shape for us to go home for a brief visit before his transplant (assuming his next tests are acceptable.
Peter and I stayed at the hospital with Nate and Peter handled that pretty well. When Nathan was sleeping I would take Peter on walks around UW. It is a beautiful campus. I was very thankful for one nurse who would whisper when she would come in the middle of the night. She never woke Peter up! I wish I knew which one she was - I'd buy her a candy bar!
Saturday, July 27, 2013
Thursday, July 18, 2013
We have some good news and some bad news...
The good news is that Nathan has been feeling better since his last transfusion and we are having a great time...well, as much as could be expected. It's easy for me to say that because I'm not going through all the stuff he is.
Two months after we were married we were expecting Megan. When she was only a five months old I became pregnant with Michael. Emma was born less than two years later. Since I get pretty sick when I am pregnant, the first few years of our marriage was pretty much me being sick and then we were chasing after very active little kids while Nathan was working, going to school and being in Young Men's and Elder's Quorum presidencies. I've always felt kind of sad that we didn't really have the "newlywed" period in our lives. Being here has given us a chance to be together a lot. I've loved how we've gotten to cook together, walk everywhere together, talk about the podcasts we've been listening to, and when Nathan is feeling good, go explore Seattle.
The SCCA House is an amazingly helpful place to stay and we have already begun to make some friends here. It is exactly what is needed. The SCCA clinic is impressive and we have total confidence in the doctors there.
We have been feeling so confident, I was beginning to again feel like we were cheating somehow. That everything was going to be okay. It wasn't going to be easy, but we were so lucky and everything will work out perfectly. We were even given permission to head home for a week or two while we waited for our insurance to review all the test results and approve the transplant.
So there's the good news.
Today we learned that Nathan's latest spinal tap showed cancerous cells. We had hoped that would not be the case because it would mean he would need to receive radiation for his brain which would very likely result in loss of brain function that we were told could effect his professional and personal life. Nathan had previously had clean spinal taps. Hearing this news was almost as shocking as learning he had cancer.
In order to avoid this, we have decided to stay in Seattle instead of going home in order for Nathan to receive a much tougher regimen of chemo. He will be admitted to the hospital as soon as we have insurance clearance and they have a space; probably Saturday.
When we see how tough this particular cancer is to fight, all of our reservations about doing the transplant disappear and we cling to the hope of it saving Nathan's life.
Early next week, Nathan will also have a scan to check for brain tumors. I am so grateful for all the prayers on our behalf. It is unbelievable the difference they make and I will never be able to express how much they mean to us. So, I'd like to ask a favor, please. Instead of praying for Nathan to have a clean scan, I'd like to ask for prayers that there be no brain tumors, but if there are, that they will show up on the scan. I'd much rather face this and get it taken care of. I don't want runaway brain cancer down the road. :)
So that is where things are right now. Peter has been amazing throughout all the appointments and loves the attention he gets, although I know he misses his big brothers and sisters. He was excited to see kids when we went to church on Sunday and he crawls towards the computer when we are on Skype. I think he is gaining weight because I don't like him crawling on the waiting room floors (I gave in and let him once for just a few minutes and he had black knees) and I feed him snacks to keep him happy. I'm trying to think of other things to entertain him. He is bored of his little toys. Bubbles have gotten old and I only use them when the floor is carpeted. I'm thinking about getting a laser pointer, a small mirror and maybe a small car to keep in my pack. I've also thought of bringing a flat sheet and putting it on the floor. He's getting a little bit fed up with being held all the time. I'm open to any suggestions!
(I don't mean to suggest the SCCA is a dirty place. It is the CLEANEST place in the world! But a floor is a floor :) )
Peter is a very vocal little guy. Nathan has been interested in Chihuly since he was at CBC. Last night we walked to the Seattle Center and visited his gallery. It was pretty impressive and Peter loved it. He jabbered about each exhibit.
I'd better go entertain him, but I first want to say how lucky we are. I met a guy that left his wife and children in North Carolina. As much as I hate to leave my kids, I couldn't stand not being with Nathan through this and not knowing how he was doing. We are so lucky our kids are in good hands. Thank you to our families (especially our moms), Megan, our ward and our neighbors!
Two months after we were married we were expecting Megan. When she was only a five months old I became pregnant with Michael. Emma was born less than two years later. Since I get pretty sick when I am pregnant, the first few years of our marriage was pretty much me being sick and then we were chasing after very active little kids while Nathan was working, going to school and being in Young Men's and Elder's Quorum presidencies. I've always felt kind of sad that we didn't really have the "newlywed" period in our lives. Being here has given us a chance to be together a lot. I've loved how we've gotten to cook together, walk everywhere together, talk about the podcasts we've been listening to, and when Nathan is feeling good, go explore Seattle.
The SCCA House is an amazingly helpful place to stay and we have already begun to make some friends here. It is exactly what is needed. The SCCA clinic is impressive and we have total confidence in the doctors there.
We have been feeling so confident, I was beginning to again feel like we were cheating somehow. That everything was going to be okay. It wasn't going to be easy, but we were so lucky and everything will work out perfectly. We were even given permission to head home for a week or two while we waited for our insurance to review all the test results and approve the transplant.
So there's the good news.
Today we learned that Nathan's latest spinal tap showed cancerous cells. We had hoped that would not be the case because it would mean he would need to receive radiation for his brain which would very likely result in loss of brain function that we were told could effect his professional and personal life. Nathan had previously had clean spinal taps. Hearing this news was almost as shocking as learning he had cancer.
In order to avoid this, we have decided to stay in Seattle instead of going home in order for Nathan to receive a much tougher regimen of chemo. He will be admitted to the hospital as soon as we have insurance clearance and they have a space; probably Saturday.
When we see how tough this particular cancer is to fight, all of our reservations about doing the transplant disappear and we cling to the hope of it saving Nathan's life.
Early next week, Nathan will also have a scan to check for brain tumors. I am so grateful for all the prayers on our behalf. It is unbelievable the difference they make and I will never be able to express how much they mean to us. So, I'd like to ask a favor, please. Instead of praying for Nathan to have a clean scan, I'd like to ask for prayers that there be no brain tumors, but if there are, that they will show up on the scan. I'd much rather face this and get it taken care of. I don't want runaway brain cancer down the road. :)
So that is where things are right now. Peter has been amazing throughout all the appointments and loves the attention he gets, although I know he misses his big brothers and sisters. He was excited to see kids when we went to church on Sunday and he crawls towards the computer when we are on Skype. I think he is gaining weight because I don't like him crawling on the waiting room floors (I gave in and let him once for just a few minutes and he had black knees) and I feed him snacks to keep him happy. I'm trying to think of other things to entertain him. He is bored of his little toys. Bubbles have gotten old and I only use them when the floor is carpeted. I'm thinking about getting a laser pointer, a small mirror and maybe a small car to keep in my pack. I've also thought of bringing a flat sheet and putting it on the floor. He's getting a little bit fed up with being held all the time. I'm open to any suggestions!
(I don't mean to suggest the SCCA is a dirty place. It is the CLEANEST place in the world! But a floor is a floor :) )
Peter is a very vocal little guy. Nathan has been interested in Chihuly since he was at CBC. Last night we walked to the Seattle Center and visited his gallery. It was pretty impressive and Peter loved it. He jabbered about each exhibit.
I'd better go entertain him, but I first want to say how lucky we are. I met a guy that left his wife and children in North Carolina. As much as I hate to leave my kids, I couldn't stand not being with Nathan through this and not knowing how he was doing. We are so lucky our kids are in good hands. Thank you to our families (especially our moms), Megan, our ward and our neighbors!
And We're Off!!!
Monday morning I woke up at 4:30 when Peter started poking at my face. At 5:00 Norah came to sleep with us. At 5:30 she threw up all over me. I cleaned her and the bed up and then went to take a shower...with COLD water! Our hot water heater had gone out. I only had two more days at home, so much to do, and I didn't want to leave Norah when she was sick.
In the past I would have been upset, but so many things have gone wrong over the past couple of months, I'm better at just rolling with what ever happens. My new attitude is that I like my kids to do what ever I ask them to with out complaining. I'm sure Heavenly Father would like the same from me. I'm pretty good at whining and this thought helps me avoid that.
I am amazed how much we got done on Monday and Tuesday. (Well, for the several days previous for that matter. Saturday Philip's family came over to help me get our yard in shape by weeding, picking off the yucky apples, and making a sandbox for Michael's family life merit badge. They are awesome!) By the time we were ready to go I felt like I had left the house fairly organized and stocked.
Poor Nathan has just finished a round of chemo on Sunday and wasn't feeling well. Since he was worried about being car sick, he had a great idea to spend the night in Ellensburg. Lying on the couch he gave each one of our kids father's blessings. Then he and Jared left around 6:00.
I stayed and helped the kids clean up and get ready for bed. I rocked all the younger ones. It was easier to think about leaving once they were in bed and the little ones were asleep. Emma asked if she could help me pack the car since she didn't get to be rocked. She was so helpful. Without her it would have taken twice as long to get ready.
I ended up leaving just after 11:00. It was strange to be driving so late. I felt like I had the whole freeway to myself and when I stopped for gas in Prosser, it felt like I was in a ghost town. The whole time I kept thinking about my kids and how I was driving farther away from them and toward an uncertain future.
The next morning we left early for Seattle. Going over the pass is always a pretty drive. I was worried about driving in Seattle but I said a prayer and I always had an opening when I needed to change lanes. I actually beat Jared and Nathan to the parking lot. As I was walking to the elevator in the parking garage, I turned a corner and saw Jared's car stalled. They had ran out of gas but had made it all the way to the garage and Jared was able to push it down hill for Nathan to park just across from me. I'm counting that as a miracle.
We checked into the cancer center and Nathan and Jared had a lot of blood drawn. We had time before our next appointment so we walked down the hill to get lunch by Lake Union. Then the guys had physicals and meetings with the nurses about their medical history. They were each given a binder of consent forms to take home and read that night.
Nathan's headache was really bad so we checked into the SCCA House for Nathan to rest and then Jared and I went to fill Jared's car up with gas.
Living in Seattle is a new experience. Driving actually hasn't been as bad as I thought it was going to be and when I get to know my way around it will be better. It's the finding and paying for parking I hate. Yea for the Tri-Cities and plentiful and free parking! Jared and I have had to wake up at 6:00 to feed our meters. Seattle has a ban on plastic grocery sacks so I will get good at remembering to bring my reusable bags with me. Every where we go there are three garbage cans: garbage, compost and recycle. Right next to the SCCA house is a "giving garden." It's a pretty place that includes eatable plants. I think that is a smart solution to help all the homeless people. It is so sad to see them. For most of them, it is obvious that they are mentally ill. When we walk by my first thought is to smile and say hi but then I worry about them following me as I walk away.
Thursday morning I got to work unpacking and organizing our hotel room where we were staying until a spot at the Pete Gross house opened for us. I figured if I did that we would get an apartment faster and as I placed the last book on the shelf the phone rang. There was an opening at the Pete Gross House! We were about to leave for the clinic so we told them we would stop by on our way home.
The Cancer Center has shuttles that run from the housing to clinic and hospital and so thankfully we didn't have to worry about driving or parking. Nathan had an EKG and we had a meeting with the attending doctor and nurse to sign consent forms, learn about studies and get more information about Nate's particular procedure.
"So, you have Peripheral T-Cell Lymphomia," Dr. Scott began,
"WHAT?!?!" Nathan immediately replied, much to the doctor and nurses shock. After they realized he was teasing, they told us that several years ago that really happened with a man who had already been through transplant. Throughout his treatment he had never realized that the strange sounding desiese that ended with a "ia" was a cancer.
-----------------
I wrote all of this almost a month ago and was interrupted mid-thought. Since I can't remember what I was going to say, here's a brief synopsis of what happened.
Jared was determined not to be the best donor and was off the hook. Randy Dupuy came to visit and we all went to the EMP. Nathan had been wanting to go there since it had opened. I hope he enjoyed it, although he really wasn't feeling well. Nathan had just gone through a round of chemo so we were able to return home since they wanted the chemo to take full effect before any more tests were taken. We were able to have Fourth of July with our family and Jared and his kids stayed with us for a week. We came back to the SSCA and have had non-stop appointments since!
In the past I would have been upset, but so many things have gone wrong over the past couple of months, I'm better at just rolling with what ever happens. My new attitude is that I like my kids to do what ever I ask them to with out complaining. I'm sure Heavenly Father would like the same from me. I'm pretty good at whining and this thought helps me avoid that.
I am amazed how much we got done on Monday and Tuesday. (Well, for the several days previous for that matter. Saturday Philip's family came over to help me get our yard in shape by weeding, picking off the yucky apples, and making a sandbox for Michael's family life merit badge. They are awesome!) By the time we were ready to go I felt like I had left the house fairly organized and stocked.
Poor Nathan has just finished a round of chemo on Sunday and wasn't feeling well. Since he was worried about being car sick, he had a great idea to spend the night in Ellensburg. Lying on the couch he gave each one of our kids father's blessings. Then he and Jared left around 6:00.
I stayed and helped the kids clean up and get ready for bed. I rocked all the younger ones. It was easier to think about leaving once they were in bed and the little ones were asleep. Emma asked if she could help me pack the car since she didn't get to be rocked. She was so helpful. Without her it would have taken twice as long to get ready.
I ended up leaving just after 11:00. It was strange to be driving so late. I felt like I had the whole freeway to myself and when I stopped for gas in Prosser, it felt like I was in a ghost town. The whole time I kept thinking about my kids and how I was driving farther away from them and toward an uncertain future.
The next morning we left early for Seattle. Going over the pass is always a pretty drive. I was worried about driving in Seattle but I said a prayer and I always had an opening when I needed to change lanes. I actually beat Jared and Nathan to the parking lot. As I was walking to the elevator in the parking garage, I turned a corner and saw Jared's car stalled. They had ran out of gas but had made it all the way to the garage and Jared was able to push it down hill for Nathan to park just across from me. I'm counting that as a miracle.
We checked into the cancer center and Nathan and Jared had a lot of blood drawn. We had time before our next appointment so we walked down the hill to get lunch by Lake Union. Then the guys had physicals and meetings with the nurses about their medical history. They were each given a binder of consent forms to take home and read that night.
Nathan's headache was really bad so we checked into the SCCA House for Nathan to rest and then Jared and I went to fill Jared's car up with gas.
Living in Seattle is a new experience. Driving actually hasn't been as bad as I thought it was going to be and when I get to know my way around it will be better. It's the finding and paying for parking I hate. Yea for the Tri-Cities and plentiful and free parking! Jared and I have had to wake up at 6:00 to feed our meters. Seattle has a ban on plastic grocery sacks so I will get good at remembering to bring my reusable bags with me. Every where we go there are three garbage cans: garbage, compost and recycle. Right next to the SCCA house is a "giving garden." It's a pretty place that includes eatable plants. I think that is a smart solution to help all the homeless people. It is so sad to see them. For most of them, it is obvious that they are mentally ill. When we walk by my first thought is to smile and say hi but then I worry about them following me as I walk away.
Thursday morning I got to work unpacking and organizing our hotel room where we were staying until a spot at the Pete Gross house opened for us. I figured if I did that we would get an apartment faster and as I placed the last book on the shelf the phone rang. There was an opening at the Pete Gross House! We were about to leave for the clinic so we told them we would stop by on our way home.
The Cancer Center has shuttles that run from the housing to clinic and hospital and so thankfully we didn't have to worry about driving or parking. Nathan had an EKG and we had a meeting with the attending doctor and nurse to sign consent forms, learn about studies and get more information about Nate's particular procedure.
"So, you have Peripheral T-Cell Lymphomia," Dr. Scott began,
"WHAT?!?!" Nathan immediately replied, much to the doctor and nurses shock. After they realized he was teasing, they told us that several years ago that really happened with a man who had already been through transplant. Throughout his treatment he had never realized that the strange sounding desiese that ended with a "ia" was a cancer.
-----------------
I wrote all of this almost a month ago and was interrupted mid-thought. Since I can't remember what I was going to say, here's a brief synopsis of what happened.
Jared was determined not to be the best donor and was off the hook. Randy Dupuy came to visit and we all went to the EMP. Nathan had been wanting to go there since it had opened. I hope he enjoyed it, although he really wasn't feeling well. Nathan had just gone through a round of chemo so we were able to return home since they wanted the chemo to take full effect before any more tests were taken. We were able to have Fourth of July with our family and Jared and his kids stayed with us for a week. We came back to the SSCA and have had non-stop appointments since!
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