I have no idea what PICC stands for (and I could look it up, but don't feel like it :) ), I do know what it does and what it looks like though. So, after many many failed attempts at trying to get an IV in John for 2 days, it was finally time for John to get a PICC line. It is a more permanent IV, that goes in his arm and a catheter is fed through the vein up to the main artery by the heart. He has 15 inches of catheter running through him. He said it really hurt getting it in, but it is SO nice. There was NO problem getting his antibiotic in him last night. And the hospital can also draw blood from it. It should last 2 - 3 months?? I have no idea how they know when it is done. Still, one day at a time, and today it is working.
John had a good day yesterday. Stayed home and relaxed until it was time to go to the hospital and get the PICC line in. He also had blood work and a chest xray. He came home and we got to celebrate another birthday yesterday - it was Michael's 11th birthday. John had an ok amount of energy and was feeling pretty good. This morning he got up and ready and went to work. He said he feels good today too. It could be because we are half way through this cycle and there is less medicine he is taking. The first 2 weeks, is crazy with all the meds. If he still feels good, he might even go trick or treating with us tonight - we will see.
I am doing ok. Sometimes I still can not believe my husband has cancer!!! It still feels pretty surreal. It happened so fast and all my days are blending together. I never know what day it is any more - Michael's birthday totally snuck up on me (good thing I had actually birthday shopped over a month ago). I wake up each morning and realize I am not having a nightmare and get moving with my day. It is HARD! But, I don't have a choice. It is hard to try and keep life somewhat "normal" for the kids, and it is hard to get enough sleep. It is hard to watch John in pain, it is hard to stay on top of house work, it is hard to plan anything, it is just hard.
Wednesday, October 31, 2012
Monday, October 29, 2012
Too much
Ok - too much has been going on!
So, John continued to feel fine while at the hospital. Friday evening was told that as long as he did not develop a fever AND his chest xray showed improvement with the pneumonia he could be released from the hospital Saturday about noon. Luckily - that is what happened. I went to pick him up about 11 am and he was practically running out of the hospital :) We got home and had plenty of time to get ready for Jenna's baptism at 3 pm. The baptism was amazing and John had the strength he needed (he baptized and confirmed her, he sang a solo and we sang as a song as a family. He left right at the end of the baptism (no socializing for him). He came home and just relaxed the rest of the day. The Aunts and Uncles took our kids to a trunk or treat activity and I stayed home with John and his brother George came to visit for a little bit. It was a pretty good day.
Sunday started out good :) It was my birthday and the kids primary program at church. John came to sacrament for the program and then left. He had to wear his mask and we sat in the back. The mask makes him real sweaty though. We all came home after sacrament meeting and had a family "brunch". It was super fun, we had 2 breakfast cakes and scrambled eggs and OJ AND Rachelle, and Brook and Joy set up decorations all over the house and made it look like a birthday for me :) It was so fabulous and I SO appreciate it. John still seemed to be doing fine. Some of the family left at 1 pm to go to Brook and Dave's primary program. And we were waiting for home health to come and put an IV in John for at home antibiotics. They were running SO late and literally got here 2 hours late. We were supposed to eat dinner about 4 pm and that did not happen.
The first nurse came and tried twice and could not get John's veins to take the needle. And it was really hurting John. So, she called another nurse to come. We had to wait about an hour and then Tami came. We really liked Tami. Although it did take her about half an hour and 2 more tries to get an IV in. She was so nice and patient. John was not having fun and it was super stressful. The worst part was that she checked John's vitals and he had a darn fever!!!! We both just sat there and cried. She said it was ok, and wait to call the hospital because another few hours would not be a big deal (so we could celebrate my birthday). Problem was neither of us were really hungry :( His temp kept going up so we knew we needed to call. It got to almost 102 in the next few hours so I finally called the hospital. The PA called me back and happened to be the PA that was there Saturday when John left. He actually said since John was on 2 antibiotics to wait it out if he wasn't feeling sick. He was probably just reacting to something.
So, I liked that :) John got to stay home and watch the Giants win the World Series and his fever broke and started going down at bedtime. He slept great and felt good this morning. He has had a good day today and just relaxed. We went on a walk and watched Modern Family together while the kids were at school.
But, this afternoon we go to do his antibiotic. He starts to flush it and immediately big bubble under the skin and we know the catheter is NOT in the vein. AHHHHHH! It came out!!!! So, we had to call home health nurse again - They are literally down stairs right now trying to find another vein - I left after 2 tries and seeing blood squirt everywhere :( Problem is his veins are done. The chemo makes them weaker and they are spasming and won't take the IV now. Luckily he does have an appointment tomorrow to get a PICC line in. It should last for months. They go in through an arm vein and feed the catheter all the way through into a main artery by the heart. That will help a lot, I just hope they do not have trouble getting it in. John is REALLY tough when it comes to getting veins poked (I am not). And I am watching him in pain and I just cry. I hate it. Good news is that his temp has stayed down all day and he is feeling good. Hopefully at work Wednesday. I don't think he will go in tomorrow because he has to be at the hospital be 11:45 to get the PICC line in and then do bloodwork and a chest xray to check the pneumonia.
We have had a busy, busy past few days. John's parents were also in town and his brother George came down from Idaho for the baptism and to see John. Tomorrow is a new day!
So, John continued to feel fine while at the hospital. Friday evening was told that as long as he did not develop a fever AND his chest xray showed improvement with the pneumonia he could be released from the hospital Saturday about noon. Luckily - that is what happened. I went to pick him up about 11 am and he was practically running out of the hospital :) We got home and had plenty of time to get ready for Jenna's baptism at 3 pm. The baptism was amazing and John had the strength he needed (he baptized and confirmed her, he sang a solo and we sang as a song as a family. He left right at the end of the baptism (no socializing for him). He came home and just relaxed the rest of the day. The Aunts and Uncles took our kids to a trunk or treat activity and I stayed home with John and his brother George came to visit for a little bit. It was a pretty good day.
Sunday started out good :) It was my birthday and the kids primary program at church. John came to sacrament for the program and then left. He had to wear his mask and we sat in the back. The mask makes him real sweaty though. We all came home after sacrament meeting and had a family "brunch". It was super fun, we had 2 breakfast cakes and scrambled eggs and OJ AND Rachelle, and Brook and Joy set up decorations all over the house and made it look like a birthday for me :) It was so fabulous and I SO appreciate it. John still seemed to be doing fine. Some of the family left at 1 pm to go to Brook and Dave's primary program. And we were waiting for home health to come and put an IV in John for at home antibiotics. They were running SO late and literally got here 2 hours late. We were supposed to eat dinner about 4 pm and that did not happen.
The first nurse came and tried twice and could not get John's veins to take the needle. And it was really hurting John. So, she called another nurse to come. We had to wait about an hour and then Tami came. We really liked Tami. Although it did take her about half an hour and 2 more tries to get an IV in. She was so nice and patient. John was not having fun and it was super stressful. The worst part was that she checked John's vitals and he had a darn fever!!!! We both just sat there and cried. She said it was ok, and wait to call the hospital because another few hours would not be a big deal (so we could celebrate my birthday). Problem was neither of us were really hungry :( His temp kept going up so we knew we needed to call. It got to almost 102 in the next few hours so I finally called the hospital. The PA called me back and happened to be the PA that was there Saturday when John left. He actually said since John was on 2 antibiotics to wait it out if he wasn't feeling sick. He was probably just reacting to something.
So, I liked that :) John got to stay home and watch the Giants win the World Series and his fever broke and started going down at bedtime. He slept great and felt good this morning. He has had a good day today and just relaxed. We went on a walk and watched Modern Family together while the kids were at school.
But, this afternoon we go to do his antibiotic. He starts to flush it and immediately big bubble under the skin and we know the catheter is NOT in the vein. AHHHHHH! It came out!!!! So, we had to call home health nurse again - They are literally down stairs right now trying to find another vein - I left after 2 tries and seeing blood squirt everywhere :( Problem is his veins are done. The chemo makes them weaker and they are spasming and won't take the IV now. Luckily he does have an appointment tomorrow to get a PICC line in. It should last for months. They go in through an arm vein and feed the catheter all the way through into a main artery by the heart. That will help a lot, I just hope they do not have trouble getting it in. John is REALLY tough when it comes to getting veins poked (I am not). And I am watching him in pain and I just cry. I hate it. Good news is that his temp has stayed down all day and he is feeling good. Hopefully at work Wednesday. I don't think he will go in tomorrow because he has to be at the hospital be 11:45 to get the PICC line in and then do bloodwork and a chest xray to check the pneumonia.
We have had a busy, busy past few days. John's parents were also in town and his brother George came down from Idaho for the baptism and to see John. Tomorrow is a new day!
Friday, October 26, 2012
The Hospital Staff
One thing I have been thinking about is how amazing the staff is at the Hospital. They are AMAZING! I can not believe how much John and I have loved some of the CNA's and RN's and PA's. (There are a very few we have not loved). Most of them really take their time and answer all our questions and help with everything - they are amazing. It is kind of funny to walk to 8th East and know almost every one by name :) And if we pass a Dr. in the hall, he knows John by name. The Dr's - oh my!!! FABULOUS and so so intelligent. They truly care and want what is best for the patients.
I realized something today. So, early Tuesday morning when John was throwing up and then got a fever, we took him to the hospital. And Jeff takes him in and his temp is 97!!! WHAT?? It had been 102 an hour before that. Kind of embarrassing. After a few hours one of the amazing Dr's (Dr. Ford) comes in and says he wanted to do a chest xray just to see if John had pneumonia! It felt so out of no where, but not questioning the Dr., he is amazing. There was no medical reason to think John had pneumonia, other than his white blood cell count started going up (and it had been going down and it should be going down). Going up is usually the sign on an infection. And the super smart Dr. was right - pneumonia (and caught super early). So, my point is that we only took John to the hospital because he had a fever. And that led to the Dr. finding pneumonia. If John had not had the fever for a few hours he would still be home with pneumonia getting worse and worse. I can see the Lord's hand watching over us every day. I know he is there watching and protecting. And I am so glad for todays technology and medicines and medical staff. We love them and know John is at the right place!
On another note - here is an update: John feels totally fine :) Does not feel at all like he has pneumonia. The numbers have been great at the hospital and his body has responded great to every medicine they have given him. I think a lot of the time every one is more cautious with John's case because it is so rare. So they watch him more closely. One Dr. came in today and said he would lobby to get John home today. But he had to clear it with the head Dr., Dr. Peterson. Dr. Peterson said, " Nope, maybe Sunday if he does not get another fever". Then tonight Dr. Peterson came in and told John if he does not get a fever and if the chest xray is clear tomorrow, he can come home at noon!! At first they were saying they would just give him a "Pass" to come home for a few hours for the baptism. So, we are praying super hard for no fevers and a clear chest xray.
I realized something today. So, early Tuesday morning when John was throwing up and then got a fever, we took him to the hospital. And Jeff takes him in and his temp is 97!!! WHAT?? It had been 102 an hour before that. Kind of embarrassing. After a few hours one of the amazing Dr's (Dr. Ford) comes in and says he wanted to do a chest xray just to see if John had pneumonia! It felt so out of no where, but not questioning the Dr., he is amazing. There was no medical reason to think John had pneumonia, other than his white blood cell count started going up (and it had been going down and it should be going down). Going up is usually the sign on an infection. And the super smart Dr. was right - pneumonia (and caught super early). So, my point is that we only took John to the hospital because he had a fever. And that led to the Dr. finding pneumonia. If John had not had the fever for a few hours he would still be home with pneumonia getting worse and worse. I can see the Lord's hand watching over us every day. I know he is there watching and protecting. And I am so glad for todays technology and medicines and medical staff. We love them and know John is at the right place!
On another note - here is an update: John feels totally fine :) Does not feel at all like he has pneumonia. The numbers have been great at the hospital and his body has responded great to every medicine they have given him. I think a lot of the time every one is more cautious with John's case because it is so rare. So they watch him more closely. One Dr. came in today and said he would lobby to get John home today. But he had to clear it with the head Dr., Dr. Peterson. Dr. Peterson said, " Nope, maybe Sunday if he does not get another fever". Then tonight Dr. Peterson came in and told John if he does not get a fever and if the chest xray is clear tomorrow, he can come home at noon!! At first they were saying they would just give him a "Pass" to come home for a few hours for the baptism. So, we are praying super hard for no fevers and a clear chest xray.
Jealous . . .
I warned you all this would also be my journal for personal feelings :) Here is one of those posts!
Since John first went in to the hospital 11 days ago, he has only been home for 2 1/2 days. I really hope this is not a trend. (although the hospital is great and he has had fabulous care). I just find myself really jealous. I walk through Walmart and look at these people shopping and think to myself "what is your biggest concern right now"? "I bet you don't have 5 kids under 13 (4 of whom have enough issues from spending years in foster care), I bet your husband is healthy and working, I bet you aren't juggling 3 school schedules, church activities, putting kids to bed by yourself every night, and spending every minute possible at the hospital with your husband who is fighting cancer". I get on facebook and get so frustrated with people who are complaining. REALLY - that is your biggest concern right now??
I know it really isn't fair of me to think these things. Every one has hard times in life and people have worse things going on in their life than I do. And every one has a right to complain about whatever they want to on facebook! I do know that - and it's ok. I just have moments that I am so overwhelmed and literally take it one minute at a time.
I am SO SO SO grateful for everything so many people are doing for us. I am grateful for a friend who thought to film Michael getting his Arrow of Light at Pack meeting last night so John could see it (and as I completely lose it on stage balling). I am grateful for every single dinner and every time someone stops by just to say HI, I am grateful for every single hug, I am grateful for a Bishopric that has taken over so many things for Jenna's baptism tomorrow, I am so grateful to have family near by, I am grateful for a friend who mowed my lawn, I am grateful for every single card we have gotten in the mail and especially grateful for the fasting and prayers for our family. Every one is so helpful and supportive and I do not know how I could do this with out each of you in my life.
Some times, it is just plain HARD!
Since John first went in to the hospital 11 days ago, he has only been home for 2 1/2 days. I really hope this is not a trend. (although the hospital is great and he has had fabulous care). I just find myself really jealous. I walk through Walmart and look at these people shopping and think to myself "what is your biggest concern right now"? "I bet you don't have 5 kids under 13 (4 of whom have enough issues from spending years in foster care), I bet your husband is healthy and working, I bet you aren't juggling 3 school schedules, church activities, putting kids to bed by yourself every night, and spending every minute possible at the hospital with your husband who is fighting cancer". I get on facebook and get so frustrated with people who are complaining. REALLY - that is your biggest concern right now??
I know it really isn't fair of me to think these things. Every one has hard times in life and people have worse things going on in their life than I do. And every one has a right to complain about whatever they want to on facebook! I do know that - and it's ok. I just have moments that I am so overwhelmed and literally take it one minute at a time.
I am SO SO SO grateful for everything so many people are doing for us. I am grateful for a friend who thought to film Michael getting his Arrow of Light at Pack meeting last night so John could see it (and as I completely lose it on stage balling). I am grateful for every single dinner and every time someone stops by just to say HI, I am grateful for every single hug, I am grateful for a Bishopric that has taken over so many things for Jenna's baptism tomorrow, I am so grateful to have family near by, I am grateful for a friend who mowed my lawn, I am grateful for every single card we have gotten in the mail and especially grateful for the fasting and prayers for our family. Every one is so helpful and supportive and I do not know how I could do this with out each of you in my life.
Some times, it is just plain HARD!
Thursday, October 25, 2012
Back at the Hospital
So, I didn't blog yesterday because John has been doing so well. There was nothing to blog. He went to work for 2 days, he's been eating fine, just lower energy. He was thrilled to watch the Giants play in the World Series last night. Everything was going ok :)
Last night I woke up at 1:30 am to John calling my name. He was in the bathroom puking :( I got him some anti nausea pills and that helped a little. But both of us have been up since 1:30 am. John was also developing a fever. The magic number to call the hospital is 100.4. His stayed around 100.1 for a while. Early this morning it got to 102. But he was feeling ok. He was no longer nauseas and wanted to eat. We called the hospital and they wanted him to come in to the out patient clinic. It took some thinking but we decided to see if one of Johns brothers could take him in so I could stay with the kids and get them to school.
So, Jeff comes to get John at 6 am ( and it is snowing). I get kids up and to school and then go to the hospital. John is doing ok. He has no fever an was ready to eat :) They have an iv fluid drip in him and took blood for lab work. They want to make sure he does not have a blood infection, but have to culture it for 24 hours. The Dr came in and said he wanted to do an X-ray too to make sure John does not have pneumonia. So we go down stairs for am X-ray and results come in saying, YES, he somehow came down with pneumonia over night :(
We wait a little longer and find out they do want to admit him. Ughhhh!!! So I make a list and run home to pack for him and to eat some lunch. I go back and unpack for him, take him on a walk and get him some lunch. Then, I had to get home to get kids from school. Now on to do dinner, and Michael has a pack meeting and Abby is babysitting. Oh and the Dr said as long as John is feeling ok he can at least be released for a few hours on Saturday for Jenna's baptism. But best case is he will be home for good.
I HATE CANCER!!! Today has not been a good day.
Last night I woke up at 1:30 am to John calling my name. He was in the bathroom puking :( I got him some anti nausea pills and that helped a little. But both of us have been up since 1:30 am. John was also developing a fever. The magic number to call the hospital is 100.4. His stayed around 100.1 for a while. Early this morning it got to 102. But he was feeling ok. He was no longer nauseas and wanted to eat. We called the hospital and they wanted him to come in to the out patient clinic. It took some thinking but we decided to see if one of Johns brothers could take him in so I could stay with the kids and get them to school.
So, Jeff comes to get John at 6 am ( and it is snowing). I get kids up and to school and then go to the hospital. John is doing ok. He has no fever an was ready to eat :) They have an iv fluid drip in him and took blood for lab work. They want to make sure he does not have a blood infection, but have to culture it for 24 hours. The Dr came in and said he wanted to do an X-ray too to make sure John does not have pneumonia. So we go down stairs for am X-ray and results come in saying, YES, he somehow came down with pneumonia over night :(
We wait a little longer and find out they do want to admit him. Ughhhh!!! So I make a list and run home to pack for him and to eat some lunch. I go back and unpack for him, take him on a walk and get him some lunch. Then, I had to get home to get kids from school. Now on to do dinner, and Michael has a pack meeting and Abby is babysitting. Oh and the Dr said as long as John is feeling ok he can at least be released for a few hours on Saturday for Jenna's baptism. But best case is he will be home for good.
I HATE CANCER!!! Today has not been a good day.
Tuesday, October 23, 2012
Family Pictures
Stem Cell Transplant
OK - the next step. So, right now John is doing chemo, steroids and something else :) His body is doing fine with it and we want it to keep bring down the white blood cell count for as long as possible. Then, he has a choice to make. Auto vs. Allo (those are the short names for types of stem cell transplants).
Auto is where they take out John's stem cells and freeze them. Then through high doses of chemo and maybe radiation kill all the cells in his body. Then put his that were frozen back in him. It has been explained that it is kind of like a garden and the stem cells regenerate through out his body. He would be in the hospital about 4 weeks and then resting at home about 2 weeks before he could work. Pros are that his body should accept his own cells and there should not be a problem or complications. Cons are that the cancer will come back - could be months, could be a few years.
Allo is a donors stem cells. We are hoping his is matched to either his sister Christy or his brother George. They only test full siblings and then go to a donor bank and do their best to find a close match. They do the same thing and through chemo and radiation kill all his cells and input the donors. He would be in the hospital any where from a few months up to a year. Biggest pro is that he would be cured since it is all new cells of some one else. Con is that bodies do not always accept a donors stem cell. It is a lot more risky.
HMMMMM - ya, well for John only doing auto is not a choice. They can do it a few times, but after 2 - 3 times it stops working and his life may have been extended 5 - 9 years. He knows he will do the allo and take the risk. Just not sure if he will do it first or maybe do an auto once and then the allo when the cancer comes back.
He has great Dr's and they have said it is fully his choice. Don't ask me what I think? I have no idea. It is something that has to be decided, but luckily not quite yet. It will take a lot of prayer to figure it out.
Auto is where they take out John's stem cells and freeze them. Then through high doses of chemo and maybe radiation kill all the cells in his body. Then put his that were frozen back in him. It has been explained that it is kind of like a garden and the stem cells regenerate through out his body. He would be in the hospital about 4 weeks and then resting at home about 2 weeks before he could work. Pros are that his body should accept his own cells and there should not be a problem or complications. Cons are that the cancer will come back - could be months, could be a few years.
Allo is a donors stem cells. We are hoping his is matched to either his sister Christy or his brother George. They only test full siblings and then go to a donor bank and do their best to find a close match. They do the same thing and through chemo and radiation kill all his cells and input the donors. He would be in the hospital any where from a few months up to a year. Biggest pro is that he would be cured since it is all new cells of some one else. Con is that bodies do not always accept a donors stem cell. It is a lot more risky.
HMMMMM - ya, well for John only doing auto is not a choice. They can do it a few times, but after 2 - 3 times it stops working and his life may have been extended 5 - 9 years. He knows he will do the allo and take the risk. Just not sure if he will do it first or maybe do an auto once and then the allo when the cancer comes back.
He has great Dr's and they have said it is fully his choice. Don't ask me what I think? I have no idea. It is something that has to be decided, but luckily not quite yet. It will take a lot of prayer to figure it out.
He is HOME!
YAY! We are so happy to have John home. The hospital had to wait until his white blood cells were at a certain level. And then on Sunday his phosphorous levels were low so they put him on a drip for that. Sunday morning I took the kids to church. It was such a busy marathon of a day. Then we came home and Abby grabbed something to eat and then ran back to church for choir practice (I am SO glad the church is literally right across the street). Then I fed the other kids quick and took Jenna back for her baptismal interview with our Bishop. Then we all went to our old ward. Some friends; Tammy and Olivia were singing "I Know the my Redeemer Lives" for John. And since he was still in the hospital I took all the kids and voice recorded it. They did amazing and I cried the whole song, the spirit was so strong. We snuck out after the song so I could take the kids to the hospital (at this point we still weren't sure when John was coming home). We we left the chapel, several people followed me out to give me a hug and asked me to tell John he is in their prayers. I just couldn't stop crying.
I take the kids to the hospital and John was feeling fine and said he could go home in a few hours. My good friend from high schools husband was working as a PA Sunday. So Danielle went to work with him that day. When we got there it was so good to see them. Jim came in after his shift and showed John all his images from his x rays and bone scans. Since Jim knew us, he said he would show John anything he wanted after his shift. It was so nice of him. He spent about 2 hours with John. Danielle and I took the kids outside and let them run around for a while. Then I took the kids home and Jeff and Rachelle met me at the house. They watched the kids and did dinner with them so I could go get John.
John was almost ready when I got back and we loaded up and left. We stopped at a pharmacy to drop off prescriptions and came HOME!!! Kids were so excited to see him and John was now so exhausted. Luckily it was still before bed time so the kids got to see him. I got the kids in bed and Jeff went and picked up the prescriptions for us. (Right now he "only" has 7 - but 4 are for as needed side effects).
He has to go in to the outpatient clinic at the hospital every 4 days for about 2 hours for chemo and blood work. John rested yesterday and was just low energy. He is feeling ok, except for his hurt ribs. He has 6 broken or cracked ribs and that makes it hard for him to sleep. He still has not had any naseau and we are hoping he doesn't. No hair loss - yet! he may or may not. His hiccups are gone but he has not been taking the steroids - he takes them again on days 8-11 of his cycle. John made it in to work today - got there about 10:30. We will see if he can work the rest of the day. He did not have much energy, but luckily all he has to do is sit and talk on the phone.
I am really trying to get into a normal routine of life with a husband with cancer :) It is so nice when I can pick up kids from school and John can work and we can eat dinner as a family :) Until John has a stem cell transplant, everything is out patient now. Unless he gets anemic, a fever or an infection.
I am doing ok. Frustrated that I can't do everything. Michael had a volcano school project due yesterday that we had totally forgotten about :( And last night Abby was up super late working on a science project that is due today. I forget when bath nights are and life is flying by. One of these days I will figure it out. But, for now I am SUPER grateful for everyones help and the dinners that have constantly been coming in :)
I take the kids to the hospital and John was feeling fine and said he could go home in a few hours. My good friend from high schools husband was working as a PA Sunday. So Danielle went to work with him that day. When we got there it was so good to see them. Jim came in after his shift and showed John all his images from his x rays and bone scans. Since Jim knew us, he said he would show John anything he wanted after his shift. It was so nice of him. He spent about 2 hours with John. Danielle and I took the kids outside and let them run around for a while. Then I took the kids home and Jeff and Rachelle met me at the house. They watched the kids and did dinner with them so I could go get John.
John was almost ready when I got back and we loaded up and left. We stopped at a pharmacy to drop off prescriptions and came HOME!!! Kids were so excited to see him and John was now so exhausted. Luckily it was still before bed time so the kids got to see him. I got the kids in bed and Jeff went and picked up the prescriptions for us. (Right now he "only" has 7 - but 4 are for as needed side effects).
He has to go in to the outpatient clinic at the hospital every 4 days for about 2 hours for chemo and blood work. John rested yesterday and was just low energy. He is feeling ok, except for his hurt ribs. He has 6 broken or cracked ribs and that makes it hard for him to sleep. He still has not had any naseau and we are hoping he doesn't. No hair loss - yet! he may or may not. His hiccups are gone but he has not been taking the steroids - he takes them again on days 8-11 of his cycle. John made it in to work today - got there about 10:30. We will see if he can work the rest of the day. He did not have much energy, but luckily all he has to do is sit and talk on the phone.
I am really trying to get into a normal routine of life with a husband with cancer :) It is so nice when I can pick up kids from school and John can work and we can eat dinner as a family :) Until John has a stem cell transplant, everything is out patient now. Unless he gets anemic, a fever or an infection.
I am doing ok. Frustrated that I can't do everything. Michael had a volcano school project due yesterday that we had totally forgotten about :( And last night Abby was up super late working on a science project that is due today. I forget when bath nights are and life is flying by. One of these days I will figure it out. But, for now I am SUPER grateful for everyones help and the dinners that have constantly been coming in :)
Saturday, October 20, 2012
Going home one of these days . . .
AHHH - still at the hospital. Day 5! John is feeling fine, but just wants out of here. I can't imagine if this was for 4 weeks (although it will be when he has his stem cell transplant). He has been doing fine on the chemo. I think his worst side effect is the hiccups :) It can last for hours. I am getting into an odd routine of getting the kids up and getting us all ready. Then kids to school or a friends house and then I come to the hospital and stay till 3-4 pm each day. John usually showers when I get here, and we go for a walk. I try to bring him real home cooked food for lunch/dinner, we play games, go for a wak and then it is time for me to go home. In between all of this there is typically several visits from the Nurse, the CNA, occasionally the PA, the Dr. once a day, social wokers, John's coordinatior, phlebotomist and that's all I can think of for now.
John started chemo Wednesday night. Dr. wanted to monitor for 4 days or until his white blood cell count goes down to a certain level. Still waiting for that. It is going down though, so now the hope is he can go home tomorrow. It will be nice to get some normalitiy to life. John should be able to work, although he will have to come to the hospital every 4 days for an IV chemo treatment and blood work.
We have a busy week next week with family and friends coming into town for Jenna's baptism on Saturday. We are all looking forward to that. John should be able to baptize her and confirm her. But I have told him he has to leave and go home and can not stay to socialize at all :) With his white blood cell count coming down he has to be EXTRA careful about germs.
Well, that is an update for now. I am doing good and feeling ok. It is just hard and it sucks, but we will make it through this. We are amazed daily by the love, support, prayers, fasting and help we constantly recieve. Thank you every one for everything. Time to take John on a walk.
John started chemo Wednesday night. Dr. wanted to monitor for 4 days or until his white blood cell count goes down to a certain level. Still waiting for that. It is going down though, so now the hope is he can go home tomorrow. It will be nice to get some normalitiy to life. John should be able to work, although he will have to come to the hospital every 4 days for an IV chemo treatment and blood work.
We have a busy week next week with family and friends coming into town for Jenna's baptism on Saturday. We are all looking forward to that. John should be able to baptize her and confirm her. But I have told him he has to leave and go home and can not stay to socialize at all :) With his white blood cell count coming down he has to be EXTRA careful about germs.
Well, that is an update for now. I am doing good and feeling ok. It is just hard and it sucks, but we will make it through this. We are amazed daily by the love, support, prayers, fasting and help we constantly recieve. Thank you every one for everything. Time to take John on a walk.
Thursday, October 18, 2012
Hospitals Stink
Yes, hospitals stink (literall smell), and they just suck. We can't wait to get John home and I am so glad this is not for 4 weeks!!! Hopefully only 2 more days, maybe 3 till John can come home.
I don't have any thing really new to report. John did actually start chemo last night. They are monitoring him on it and so far not really any changes in any way. He has not had any side effects other than tingling lips and high blood sugar. He feels fine and has normal energy.
I took the kids to the hospital today. They have really missed John, but were all anxious about going to the hospital. I think it was good for them to see that he is normal and not sick in a hospital bed :) They were not so sure about him having to put on gloves, a robe and wear a mask though just to leave his room. The kids and I were there for about an hour and I felt bad leaving. John has movies, books. games, computer, TV, but it is just boring over there. And I still can't believe how often people are in and out of his room checking or cleaning something. We just want him home.
I don't have any thing really new to report. John did actually start chemo last night. They are monitoring him on it and so far not really any changes in any way. He has not had any side effects other than tingling lips and high blood sugar. He feels fine and has normal energy.
I took the kids to the hospital today. They have really missed John, but were all anxious about going to the hospital. I think it was good for them to see that he is normal and not sick in a hospital bed :) They were not so sure about him having to put on gloves, a robe and wear a mask though just to leave his room. The kids and I were there for about an hour and I felt bad leaving. John has movies, books. games, computer, TV, but it is just boring over there. And I still can't believe how often people are in and out of his room checking or cleaning something. We just want him home.
Wednesday, October 17, 2012
Roller Coaster
Blogging from LDS Hospital - Room 848
OK, so - Tuesday morning: Actually, John had a bad night Monday night and did not sleep much. The bone strengthening injection he had Monday gave him awful bone pain. All night long he was in pain and very nauseas. Early in the morning he had a fever over 101 so I had to call Dr. Frame. He said to give him tylenol and said he was hoping John would be at the hospital soon. I asked John if he wanted a blessing and he said yes, so I had our new friend Matt Moore (from our new ward) come over. As soon as the blessing was done John felt a lot better, fever was going down and he felt like eating. We were waiting to hear from the hospital though. John wanted to give all the kids a blessing so he did that and I took the kids to school.
As soon I walked in the door from taking the kids to school John said the hospital called. He needed to be there in 1 hour and he should expect to be there for 4 weeks!!!!! OH MY! We packed quickly and headed over to LDS Hospital. What a day we had!!
We got here and it was constant people in and out. Tests and tests and tests. They did an EKG, and took him for a full MRI. There were 2 nurses, a PA, a coordinator, social workers and the Dr. I stayed with John for a ferw hours then went home to shower while they were doing tests. Came back around 2:30 and Dr. Hoda came in. He is great and explained what was going on. Basically John has multiple myeloma that turned into Plasma Cell Leukemia. Only about 2 % of MM patients get this so it is really rare and usually in patients older that 50.
Bascially the plan is to start him on Chemo Monday. It is a 3 drug combo to try and basically get him into a sort of remission. It is a 21 day cycle. Mostly oral pills and he will now come to out patient at the hospital every 4 days for about 1-2 hours of chemo. He should be able to work through most of it as long as his body is responding well and he does not get an infection. Oh and Dr said he would NOT be here 4 weeks, only a few days :)
The long term plan is a stem cell transplant. Long term actually meaning anywhere from 6 months to 2 years. Just depends when his body is ready for it. A stem cell trasnplant can cure him in a way, but has many risks. It is our only hope though and we are positive and know John can beat this. A stem cell transplant is not fun :( and in hospital for 4 weeks then. And it is not always easy to find a match.
We are taking it one day at a time and praying his body is accepting of the chemo treatments. Plasma Cell Leukemia is rare and aggresive and not easy to treat. The Dr's are being aggressive with John and we are hopeful that with him being younger and healthy he will make it through this.
Last night I had a hard night. I got home to get the kids around 5 pm and a friend brought dinner. Kids were pretty hyper. When I get anxious I have a hard time eating. I was eating ok yesterday and even ate dinner. I felt nauseas though and my dinner did not stay down. I was just freaking out about everything and shouldn't let my self do that. I slept from about 10-3 and then could not go back to sleep. Finally got up about 6:30 to get Abby ready for school. I was still feeling nauseas and could not eating this morning (isn't John supposed to be the nauseas one). I had been praying all night for peace. I am just freaking out and cancer has taken so many people from me and I am not ready for it take take my husband. (Just pased to play Phase 10 with John)
I got the kids all to school and came home to shower and cry. I try really hard to not cry in front of the kids. I got ready to come to the hospital and was getting in the car. All of a sudden I had this instant sense of peace come over me. It was just what I needed and has stayed with me all day. I was able to eat and am feeling fine.
John is doing good. They gave him a sleeping pill last night but then woke him up all night to check vitals and take blood. His bone pain from that injection is gone, he did have a fever at some point last night though. Not sure what is causing that. Dr. Hoda came in again and said he changed his mind after talking to his board. They are starting John on chemo today and doing one 28 day cycle with a different drug. Then will start the 21 day cycle after that. They want to monitor him for the first 4 days of chemo so now he is here through Saturday/Sunday. We all can't wait for him to be home. Dr. says he should be able to work through most of the chemo.
Dr. also said John could go for a walk out side and we were about to go. But, they just came to get him to take him for a bone survey. It is basically x rays of all his bones. I think it is kind of funny that he needs permission to go out side. He feels totally fine and is not "sick". When we get him home this weekend he can go out all he wants :)
He hopes to be at work Monday or Tuesday and Dr. said he should be totally fine to baptize Jenna next Saturday. Every thing is one day at a time, but John will be fine.
OK, so - Tuesday morning: Actually, John had a bad night Monday night and did not sleep much. The bone strengthening injection he had Monday gave him awful bone pain. All night long he was in pain and very nauseas. Early in the morning he had a fever over 101 so I had to call Dr. Frame. He said to give him tylenol and said he was hoping John would be at the hospital soon. I asked John if he wanted a blessing and he said yes, so I had our new friend Matt Moore (from our new ward) come over. As soon as the blessing was done John felt a lot better, fever was going down and he felt like eating. We were waiting to hear from the hospital though. John wanted to give all the kids a blessing so he did that and I took the kids to school.
As soon I walked in the door from taking the kids to school John said the hospital called. He needed to be there in 1 hour and he should expect to be there for 4 weeks!!!!! OH MY! We packed quickly and headed over to LDS Hospital. What a day we had!!
We got here and it was constant people in and out. Tests and tests and tests. They did an EKG, and took him for a full MRI. There were 2 nurses, a PA, a coordinator, social workers and the Dr. I stayed with John for a ferw hours then went home to shower while they were doing tests. Came back around 2:30 and Dr. Hoda came in. He is great and explained what was going on. Basically John has multiple myeloma that turned into Plasma Cell Leukemia. Only about 2 % of MM patients get this so it is really rare and usually in patients older that 50.
Bascially the plan is to start him on Chemo Monday. It is a 3 drug combo to try and basically get him into a sort of remission. It is a 21 day cycle. Mostly oral pills and he will now come to out patient at the hospital every 4 days for about 1-2 hours of chemo. He should be able to work through most of it as long as his body is responding well and he does not get an infection. Oh and Dr said he would NOT be here 4 weeks, only a few days :)
The long term plan is a stem cell transplant. Long term actually meaning anywhere from 6 months to 2 years. Just depends when his body is ready for it. A stem cell trasnplant can cure him in a way, but has many risks. It is our only hope though and we are positive and know John can beat this. A stem cell transplant is not fun :( and in hospital for 4 weeks then. And it is not always easy to find a match.
We are taking it one day at a time and praying his body is accepting of the chemo treatments. Plasma Cell Leukemia is rare and aggresive and not easy to treat. The Dr's are being aggressive with John and we are hopeful that with him being younger and healthy he will make it through this.
Last night I had a hard night. I got home to get the kids around 5 pm and a friend brought dinner. Kids were pretty hyper. When I get anxious I have a hard time eating. I was eating ok yesterday and even ate dinner. I felt nauseas though and my dinner did not stay down. I was just freaking out about everything and shouldn't let my self do that. I slept from about 10-3 and then could not go back to sleep. Finally got up about 6:30 to get Abby ready for school. I was still feeling nauseas and could not eating this morning (isn't John supposed to be the nauseas one). I had been praying all night for peace. I am just freaking out and cancer has taken so many people from me and I am not ready for it take take my husband. (Just pased to play Phase 10 with John)
I got the kids all to school and came home to shower and cry. I try really hard to not cry in front of the kids. I got ready to come to the hospital and was getting in the car. All of a sudden I had this instant sense of peace come over me. It was just what I needed and has stayed with me all day. I was able to eat and am feeling fine.
John is doing good. They gave him a sleeping pill last night but then woke him up all night to check vitals and take blood. His bone pain from that injection is gone, he did have a fever at some point last night though. Not sure what is causing that. Dr. Hoda came in again and said he changed his mind after talking to his board. They are starting John on chemo today and doing one 28 day cycle with a different drug. Then will start the 21 day cycle after that. They want to monitor him for the first 4 days of chemo so now he is here through Saturday/Sunday. We all can't wait for him to be home. Dr. says he should be able to work through most of the chemo.
Dr. also said John could go for a walk out side and we were about to go. But, they just came to get him to take him for a bone survey. It is basically x rays of all his bones. I think it is kind of funny that he needs permission to go out side. He feels totally fine and is not "sick". When we get him home this weekend he can go out all he wants :)
He hopes to be at work Monday or Tuesday and Dr. said he should be totally fine to baptize Jenna next Saturday. Every thing is one day at a time, but John will be fine.
Monday, October 15, 2012
I hate this
OK - here goes:
Well, first off - Saturday was kind of busy. But, a good day. Around 4 pm we met my friend Melina and she took family pictures. I am so excited to see them. The kids were pretty hyper, but I am sure we have some good ones. Then we ended up having Rachelle's birthday dinner at our house because they lost power. It is so nice to only live 1 mile apart :) It was a little later night for the kids but it was fine.
Yesterday was great. We had a very nice Sunday and John sang in church and did amazing. We had a birthday dinner for Jenna with family and it was so nice. She wanted BBQ hamburgers and chips and jello :) It was kind of crazy, but it was fun. And fun to celebrate Jenna's birthday early. Abby reminded me today that last year we moved on Jenna's birthday - poor Jenna!!! Next year she gets an extra special birthday :)
So, this morning we got the kids to school. John was scheduled for his first chemo treatment at the Dr's office. It was supposed to be for 8 hours and some one was supposed to stay with him. So, we were packed for the day :) Books, movies, lap top, games, food. We were ready. First we meet with Dr. Frame. He comes in and talks to us. He tells us that after getting the results of the tests from last week things have changed. John does not have Chronic Lymphocytic Leukemia. He has multiply myeloma and probably also has Plasma cell leukemia.!!!! I was not surprised to have a different diagnosis, because he did not have much to go off of to guess the CLL. They needed to do more tests to figure out what was going on. This diagnosis made more sense because John has been breaking his ribs so easily and that is what happens with multiple myeloma (MM). The only good news we got was that the CT Scan came back perfectly fine. Still waiting on bone marrow biopsy results. This type of cancer is somewhat similar to CLL, but different chemo treatments, pretty much same side effects. So today was just a 20 minute IV injection of bone strengthener. We were home by noon, which was nice. I was able to get some things for Jenna's birthday. John was scheduled to start the new chemo treatment in a week. Mostly oral pills but in the office twice a week for a 1 hour IV chemo treatment.
Well, we were home and John had a question for Dr. Frame. He calls and leaves a message. About an hour later Dr. Frame calls him back. He said there was a change of plans. He is referring us to a specialist at LDS Hospital. The hospital would be calling us tomorrow morning and to tell us when to come in for a consult tomorrow. AND very likely John will be admitted to the hospital tomorrow for in patient hospital treatment!!!!! The cancer is more advanced than they first thought and we need to start aggressive treatment NOW!
It is not easy to hear this with all your kids right there. John and I were both trying to hold it together. We have no idea what this means. All we know is that it is bad enough to need a specialist and he needs to be treated in the hospital. We have no idea for how long yet. After dinner we told the kids. It is hard to tell them with so many unknowns!! Abby and Michael are having a hard time. Abby is NOT herself and is very quiet these days. Michael says he cries at bedtime. I HATE this!! All I can tell them is it isn't fair, it is ok to cry and we will be ok.
An interesting thing is that I have a friend from high school that lives about an hour south of here. Her husband as a PA and works for this new Dr. Dr. Peterson. He says he is the best and it is great that he specializes in this.
Yes, today has been a roller coaster and now John will be admitted to the hospital tomorrow or possibly later this week. Tomorrow we will find out more.
Well, first off - Saturday was kind of busy. But, a good day. Around 4 pm we met my friend Melina and she took family pictures. I am so excited to see them. The kids were pretty hyper, but I am sure we have some good ones. Then we ended up having Rachelle's birthday dinner at our house because they lost power. It is so nice to only live 1 mile apart :) It was a little later night for the kids but it was fine.
Yesterday was great. We had a very nice Sunday and John sang in church and did amazing. We had a birthday dinner for Jenna with family and it was so nice. She wanted BBQ hamburgers and chips and jello :) It was kind of crazy, but it was fun. And fun to celebrate Jenna's birthday early. Abby reminded me today that last year we moved on Jenna's birthday - poor Jenna!!! Next year she gets an extra special birthday :)
So, this morning we got the kids to school. John was scheduled for his first chemo treatment at the Dr's office. It was supposed to be for 8 hours and some one was supposed to stay with him. So, we were packed for the day :) Books, movies, lap top, games, food. We were ready. First we meet with Dr. Frame. He comes in and talks to us. He tells us that after getting the results of the tests from last week things have changed. John does not have Chronic Lymphocytic Leukemia. He has multiply myeloma and probably also has Plasma cell leukemia.!!!! I was not surprised to have a different diagnosis, because he did not have much to go off of to guess the CLL. They needed to do more tests to figure out what was going on. This diagnosis made more sense because John has been breaking his ribs so easily and that is what happens with multiple myeloma (MM). The only good news we got was that the CT Scan came back perfectly fine. Still waiting on bone marrow biopsy results. This type of cancer is somewhat similar to CLL, but different chemo treatments, pretty much same side effects. So today was just a 20 minute IV injection of bone strengthener. We were home by noon, which was nice. I was able to get some things for Jenna's birthday. John was scheduled to start the new chemo treatment in a week. Mostly oral pills but in the office twice a week for a 1 hour IV chemo treatment.
Well, we were home and John had a question for Dr. Frame. He calls and leaves a message. About an hour later Dr. Frame calls him back. He said there was a change of plans. He is referring us to a specialist at LDS Hospital. The hospital would be calling us tomorrow morning and to tell us when to come in for a consult tomorrow. AND very likely John will be admitted to the hospital tomorrow for in patient hospital treatment!!!!! The cancer is more advanced than they first thought and we need to start aggressive treatment NOW!
It is not easy to hear this with all your kids right there. John and I were both trying to hold it together. We have no idea what this means. All we know is that it is bad enough to need a specialist and he needs to be treated in the hospital. We have no idea for how long yet. After dinner we told the kids. It is hard to tell them with so many unknowns!! Abby and Michael are having a hard time. Abby is NOT herself and is very quiet these days. Michael says he cries at bedtime. I HATE this!! All I can tell them is it isn't fair, it is ok to cry and we will be ok.
An interesting thing is that I have a friend from high school that lives about an hour south of here. Her husband as a PA and works for this new Dr. Dr. Peterson. He says he is the best and it is great that he specializes in this.
Yes, today has been a roller coaster and now John will be admitted to the hospital tomorrow or possibly later this week. Tomorrow we will find out more.
Friday, October 12, 2012
Bone marrow biopsy
Hmmmm - ya, John had a bone marrow biopsy. They kind of make it sound like it is no big deal!!!
We get the kids off to school and John has his appointment for 9:30 am. We get there right at 9:30 and he checks in. They call him back pretty quickly. The nurse asks if I want to come and I am like "no thank you". I would not do well watching something like that :( After about 15 minutes, a lady comes to ask me if I want a free massage. We just happen to be there on free massage day :) I felt bad getting a massage while John was getting a biopsy!! It was just a 15 minutes massage, but was relaxing. After I go sit down again, a nurse comes to get me and says John is asking for me. I go back and they are done with the biopsy. But, John did not take it too well. He almost threw up and almost passed out - good thing I wasn't in there. He was very pale and had a rag on his head. One of the nurses went to get him some juice. It took about 10 minutes, but eventually he was ok to get up and walk.
I told him they were giving free massages and he could ask them to just do his shoulders. So, we are walking over there and we run in to Pres. Wakefield. He is our old Stake President. He looks at us and says, "what are you doing here"? John tells him what has been going on. It was so good to talk to him. He is the Director of Radiation for Salt Lake Cancer Specialists. John went to get his massage and I talked to Pres. Wakefield a little longer. He told me if we needed anything to call him and he gave me a card and put his cell and home number on it. That office we were at for the biopsy is not the regular office where John's Dr. is. But, we think we are going to switch over there after his first round of chemo. We have been there several times this week and really like that office and the staff and nurses. And it helps a ton knowing Pres. Wakefield is there too :) He also told me some Dr.'s we could switch to over there.
I get John home and he is just kind of tired, not talking much. He is doing fine, but has been just relaxing today. They said he would be a little down for about 24 hours. He says he is not in pain though, so that is good. Results from the biopsy take about a week.
And that was a day in our house.
We get the kids off to school and John has his appointment for 9:30 am. We get there right at 9:30 and he checks in. They call him back pretty quickly. The nurse asks if I want to come and I am like "no thank you". I would not do well watching something like that :( After about 15 minutes, a lady comes to ask me if I want a free massage. We just happen to be there on free massage day :) I felt bad getting a massage while John was getting a biopsy!! It was just a 15 minutes massage, but was relaxing. After I go sit down again, a nurse comes to get me and says John is asking for me. I go back and they are done with the biopsy. But, John did not take it too well. He almost threw up and almost passed out - good thing I wasn't in there. He was very pale and had a rag on his head. One of the nurses went to get him some juice. It took about 10 minutes, but eventually he was ok to get up and walk.
I told him they were giving free massages and he could ask them to just do his shoulders. So, we are walking over there and we run in to Pres. Wakefield. He is our old Stake President. He looks at us and says, "what are you doing here"? John tells him what has been going on. It was so good to talk to him. He is the Director of Radiation for Salt Lake Cancer Specialists. John went to get his massage and I talked to Pres. Wakefield a little longer. He told me if we needed anything to call him and he gave me a card and put his cell and home number on it. That office we were at for the biopsy is not the regular office where John's Dr. is. But, we think we are going to switch over there after his first round of chemo. We have been there several times this week and really like that office and the staff and nurses. And it helps a ton knowing Pres. Wakefield is there too :) He also told me some Dr.'s we could switch to over there.
I get John home and he is just kind of tired, not talking much. He is doing fine, but has been just relaxing today. They said he would be a little down for about 24 hours. He says he is not in pain though, so that is good. Results from the biopsy take about a week.
And that was a day in our house.
Thursday, October 11, 2012
Feeling Loved
Today was quite a day. John went to work, kids went to school. I have really been feeling the need to go to the temple. So after taking the kids to school I was able to go to the Jordan River Temple. It was nice to just feel the peace from being inside the temple. After that I met a friend from our old ward for lunch. We just sat and talked for 2 hours. It was SO nice, I really needed it. Today was a day of giving. This is what happened:
- First Richelle paid for my lunch - made me cry.
- Next, I came home and a friend from our new ward came over. She hugged me and I just cried and cried, and then she brought dinner, and then said she would watch my kids Monday and then said she would take treats to Jenna's class Monday for Jenna's birthday - I cried.
- Then, had a message from a car pool friend saying she wanted to drive my car pool mornings. - I cried.
- Then someone else from our ward said they would have dinners brought in next week - I cried.
- Then another friend offered to make Jenna a birthday cake Monday - I cried.
- Then, another friend from our old ward called and said she was bringing a dinner - I cried.
We feel so blessed to have such great friends near by that are so thoughtful. This is all on top of already having 3 dinners brought in this week, friends watching my kids yesterday, friends bringing books by, lots of phone calls, lots of emails and lots of hugs.
We really are going to be ok. Thank you every one, we love you.
Wednesday, October 10, 2012
a Port???
Today John and I had a chemo class. In a weird way it was kind of neat to learn a lot and what to expect. We watched a video with general information. Then they went over a lot of stuff to do with eating and drinking and diet. Then went over stuff about infections and what to avoid. They talked about the free classes they offer - even a free massage therapy (that I can go to).
The odd thing was that the nurse was telling us John would have his chemo administered through a port. She had gone over every ones files and asked John if he had his port in yet. We told her NO, but the Dr. had told us that his chemo would be done in the office. She said it must have changed and he needed to get his port in?? We were so confused. So, after the class we asked her to check his records again. Good thing we did - we were right. They had the wrong info on his paper. I think it is kind of funny, but am glad we had her check.
We will see how right she is about John's hair?? Apparently he should start losing it right around my birthday and it would all be gone within a week of that. Usually about day 14 after you start chemo. When his starts to fall out, he is letting the boys shave it all off :) We are really hoping chemo does not affect him too badly. They say you really should be able to carry on a normal life style. Just with out as much energy. You should have fatigue, but it should be level. Also, super important is to get John to exercise 30 minutes every day!!!!
We do not have any results from the tests yesterday. Although the Dr. does have them. Not sure when we will get them. Maybe not until Monday when we go in for his chemo. One day at a time.
The odd thing was that the nurse was telling us John would have his chemo administered through a port. She had gone over every ones files and asked John if he had his port in yet. We told her NO, but the Dr. had told us that his chemo would be done in the office. She said it must have changed and he needed to get his port in?? We were so confused. So, after the class we asked her to check his records again. Good thing we did - we were right. They had the wrong info on his paper. I think it is kind of funny, but am glad we had her check.
We will see how right she is about John's hair?? Apparently he should start losing it right around my birthday and it would all be gone within a week of that. Usually about day 14 after you start chemo. When his starts to fall out, he is letting the boys shave it all off :) We are really hoping chemo does not affect him too badly. They say you really should be able to carry on a normal life style. Just with out as much energy. You should have fatigue, but it should be level. Also, super important is to get John to exercise 30 minutes every day!!!!
We do not have any results from the tests yesterday. Although the Dr. does have them. Not sure when we will get them. Maybe not until Monday when we go in for his chemo. One day at a time.
Abby's turn
At first John and I were most worried about Abby and how she would take her Dad having cancer. When we told everyone she was pretty calm and did not seem very upset. Later that night she said she was nervous about the unknown and she thinks she will really learn responsibility now :) She has been very helpful with the other kids and not showing much emotion. But, I know all the kids are sensing the stress of John and I. And several kids have been sick, including Abby. Her throat is so sore and she has very little voice.
This morning Abby got up late and was rushing to get ready. She isn't feeling great, but there was something else. I asked her what was wrong and she said, "I'm just stressed, tired and I don't feel good". She was supposed to be leaving for school in like 3 minutes - and we were driving car pool today. I finally sent John to pick up the other car pool kids and he said he would be back for her in 5 minutes. She was ready for school, but kind of distant. So, I went to talk to her and she just started crying and crying. I asked if she was worried about Dad and she said "kind of". So, I called John and told him to not come back for Abby, that I would take her later.
So, I have her home with me. She really doesn't feel well, but I know there is more to it. I think she needs a little break. So much of this process is reminding me of what I went through as a kid finding out my mom had ALS. Difference is ALS is terminal and no remission or cure of any sort. I just never thought my kids would have to go through what I went through. I figured I had had enough for all of us :)
This is just the beginning . . .
This morning Abby got up late and was rushing to get ready. She isn't feeling great, but there was something else. I asked her what was wrong and she said, "I'm just stressed, tired and I don't feel good". She was supposed to be leaving for school in like 3 minutes - and we were driving car pool today. I finally sent John to pick up the other car pool kids and he said he would be back for her in 5 minutes. She was ready for school, but kind of distant. So, I went to talk to her and she just started crying and crying. I asked if she was worried about Dad and she said "kind of". So, I called John and told him to not come back for Abby, that I would take her later.
So, I have her home with me. She really doesn't feel well, but I know there is more to it. I think she needs a little break. So much of this process is reminding me of what I went through as a kid finding out my mom had ALS. Difference is ALS is terminal and no remission or cure of any sort. I just never thought my kids would have to go through what I went through. I figured I had had enough for all of us :)
This is just the beginning . . .
Tuesday, October 9, 2012
No child should . . .
I am sure this will be the first of many: We were having dinner tonight and Jenna was asked to say the prayer. Her birthday is in one week - day 1 of John's chemotherapy treatments. In her prayer she says, "please bless that Dad will not have too much cancer and will be able to have some energy for my birthday"!!!!! I had to hold back those tears. It broke my heart. No child should EVER have to worry about her Dad having enough energy to be able to celebrate her birthday :( I can not believe this is happening.
Tests
As I am writing this, John is at LDS Hospital getting a bone scan and CT Scan today. He was able to go to work for a few hours this morning. All I know was that he had to go having been fasting for 4 hours. When he got there, they hooked him up to an IV and he had to drink this radioactive lemonade stuff. 8 oz every 20 minutes for 1 1/2 hours. He was first going to have the CT scan, which I am pretty sure was for most of his torso. They need to see if the cancer is in any of his organs. Then the lemonade stuff is for his bone scan. The radioactive stuff makes it easier to see the bones on the scan. He should be home in about 2 hours.
It is odd to me that in our every day conversations we talk about Chemo, medications, CT scans, bone scans, Doctors, white blood cells. . . And I am sure that list will grow as time goes on. I will forever be grateful his cancer was found when it was, but I still feel like I will wake up one morning and realize it was all a bad dream. It just does not feel real that this is happening to us. It is hard and we are just beginning.
Every one asks how I am doing. I am doing ok, but I can be folding laundry and just start crying out of no where. And when my 6 year old is acting out and then tells me he is nervous about Dad's cancer, it is so hard to not cry and instead to comfort him. Our kids have so much faith and pray for John like crazy. They are amazing. We all have faith and feel like John will be around for a long time :) Right now we are taking everything one day at a time though.
It is odd to me that in our every day conversations we talk about Chemo, medications, CT scans, bone scans, Doctors, white blood cells. . . And I am sure that list will grow as time goes on. I will forever be grateful his cancer was found when it was, but I still feel like I will wake up one morning and realize it was all a bad dream. It just does not feel real that this is happening to us. It is hard and we are just beginning.
Every one asks how I am doing. I am doing ok, but I can be folding laundry and just start crying out of no where. And when my 6 year old is acting out and then tells me he is nervous about Dad's cancer, it is so hard to not cry and instead to comfort him. Our kids have so much faith and pray for John like crazy. They are amazing. We all have faith and feel like John will be around for a long time :) Right now we are taking everything one day at a time though.
Monday, October 8, 2012
Word is out
After telling the kids, there was no holding back. And what's the point? Every one is going to find out. We had told all our family and close friends. I texted a few people because I did not want them to find out on facebook. John put it on his facebook Friday night. I did Saturday. I think the world knows now :) We have amazing friends and support. We had friends and family bring dinners Thursday, Friday and Sunday nights! It was so nice to not have to worry about dinner this past weekend - thank you everyone. Our old Bishop called John last night once he had heard. Every one is SO supportive and helpful. I am so grateful for that.
Saturday we had a nice day. It was a busy morning as we were getting Abby ready to sing in General Conference!! John and I got ready and took the kids to Jeff and Rachelle's. Then picked up Abby's friend Aija and went to the Stake Center to pick up more girls. We were helping car pool kids to the Conference Center. They had to be there by 10:45am. So we dropped them off and had a few hours. We went to City Creek and had lunch. It was so nice to sit in the sun and relax a little. I don't think we will have too many days like that in the near future. We went to the Conference Center before 1 pm and got our seats. We were on the floor and had great seats. It was AMAZING to be at General Conference. The Choir did fabulous and the talks were perfect.
Here is John and I at City Creek after lunch before Conference.
This is in the Conference Center before Conference. Abby is in about the middle of the picture in the choir loft. On the aisle of the sopranos 4 rows from top.
Telling the kids
So, we had decided to tell the kids Friday night at dinner. John was real nervous and wanted me to tell them. I wasn't too worried about it. I told them our lives are changing, that Daddy's body isn't working right. We explained that his blood is not doing what it is supposed to and he has a disease called leukemia. We told them it is a type of cancer, but Daddy has not done anything wrong.We told them that he has to take lots of medicine to fight the bad cancer cells. That he will probably get really sick when he has chemo treatments. We also explained that we won't have any extra money for things like eating out or going to the movies. That we will have a lot of Dr bills and Daddy won't be able to work as much. I told them I would need their help.
Every one seemed ok. I think it is good that they don't have a bad connection to cancer. They asked a few questions, and seemed ok. Later that night Michael had more questions. He is the one that is the most worried. All we can say is that Dad should be ok and we all need to have faith and pray and fight. Abby seems ok. She says she is nervous about not knowing and she has a feeling she will really learn responsibility now. Isaiah has been acting out all weekend and maybe this is why. He just does not know how to express his worries. Jenna has actually been sick with a fever all weekend, but has not said much about John. Emma has been pretty quiet, but said there is a girl in her class whose Dad died from cancer this past summer. So, I am sure she is worried.
Life shouldn't be too crazy this week. But, John starts chemo one week from today. We are SO hoping he does not get super sick. We will see. John and I go to a chemo class this week to learn more about what to expect.
Every one seemed ok. I think it is good that they don't have a bad connection to cancer. They asked a few questions, and seemed ok. Later that night Michael had more questions. He is the one that is the most worried. All we can say is that Dad should be ok and we all need to have faith and pray and fight. Abby seems ok. She says she is nervous about not knowing and she has a feeling she will really learn responsibility now. Isaiah has been acting out all weekend and maybe this is why. He just does not know how to express his worries. Jenna has actually been sick with a fever all weekend, but has not said much about John. Emma has been pretty quiet, but said there is a girl in her class whose Dad died from cancer this past summer. So, I am sure she is worried.
Life shouldn't be too crazy this week. But, John starts chemo one week from today. We are SO hoping he does not get super sick. We will see. John and I go to a chemo class this week to learn more about what to expect.
Thursday, October 4, 2012
AHHHHHHHH!
John and I met with Dr. Frame today. He is our Oncologist. We liked him. He is pretty sure that John has chronic lymphocytic leukemia. We are in for a fight and it won't be easy. It is possible it has spread to some of his organs. I sat in that office pretty much knowing John has leukemia, but I think hearing it, it feels different. I am glad to know and to be moving forward and full force, here we come.
Next week John has a bone marrow biopsy, a bone scan, an xray, a CT scan and more blood work. Then Monday, Oct. 15 is his first day of chemo. He will have 3 days on 25 days off for about 6 months. In a few months the Dr. wants to do a bone marrow transplant. I can't believe I am saying all these things. I am kind of in shock. He has a good chance of fighting this, but it will be a fight and a long one. It can take 1- 2 years to get it under control. It can be "cured" in a way, can also live decades with it totally under control. First step is to start fighting.
John went back to work after his appt to talk to his boss and his HR. We need to see what they have for disability. His 3 chemo days each month are definite chemo days and he won't be able to do anything else. Then usually he will be pretty weak and sick for another week or two. Then he might have 1 or 2 weeks each month he could work. We won't know until we start.
Right now I am totally overwhelmed with all the appointments and picturing how our lives are changing. I know it will be ok. We are fighters and have no choice but to fight. We will tell the kids tomorrow. We are worried Abby will have the hardest time with it. I am going to really need her help. We have great kids though and they will be fine.
Here we go!
Next week John has a bone marrow biopsy, a bone scan, an xray, a CT scan and more blood work. Then Monday, Oct. 15 is his first day of chemo. He will have 3 days on 25 days off for about 6 months. In a few months the Dr. wants to do a bone marrow transplant. I can't believe I am saying all these things. I am kind of in shock. He has a good chance of fighting this, but it will be a fight and a long one. It can take 1- 2 years to get it under control. It can be "cured" in a way, can also live decades with it totally under control. First step is to start fighting.
John went back to work after his appt to talk to his boss and his HR. We need to see what they have for disability. His 3 chemo days each month are definite chemo days and he won't be able to do anything else. Then usually he will be pretty weak and sick for another week or two. Then he might have 1 or 2 weeks each month he could work. We won't know until we start.
Right now I am totally overwhelmed with all the appointments and picturing how our lives are changing. I know it will be ok. We are fighters and have no choice but to fight. We will tell the kids tomorrow. We are worried Abby will have the hardest time with it. I am going to really need her help. We have great kids though and they will be fine.
Here we go!
Wednesday, October 3, 2012
Tomorrow
So, in a weird way I am almost excited for John's appointment tomorrow. This anxiety of not knowing is awful. His appointment was changed to the morning. Which is good because all the kids are in school and they can do all their tests that they want to. Which hopefully means results will be in Friday.
I am grateful for the Dr. who ordered the MRI of John's shoulder, so this was randomly found. I keep thinking worst case, but reality is that just because he has a hight white blood cell count, he does not necessarily have cancer. He could have one of many infections. But, the oncologist has to figure out what it is. A lot of things are leading to leukemia, but he does not have any of the typical symptoms. I REALLY just want to know what it is and how we move forward.
We are both so stressed and anxious and the kids are sensing something is up. I worry about the kids, but they are amazing and strong kids. We will all be fine.
I am grateful for the Dr. who ordered the MRI of John's shoulder, so this was randomly found. I keep thinking worst case, but reality is that just because he has a hight white blood cell count, he does not necessarily have cancer. He could have one of many infections. But, the oncologist has to figure out what it is. A lot of things are leading to leukemia, but he does not have any of the typical symptoms. I REALLY just want to know what it is and how we move forward.
We are both so stressed and anxious and the kids are sensing something is up. I worry about the kids, but they are amazing and strong kids. We will all be fine.
Monday, October 1, 2012
Miracle #1
So, honestly yesterday I was having an emotional day. Most of the time I really am optimistic. I know what ever is supposed to happen WILL happen. John and I both really feel all will be fine and he will be ok. We just need to get started.
So, I stayed home with Isaiah yesterday since he had a fever. I always miss church when I can't go. I need the spiritual upliftment each Sunday. But I know John needed it more. So, it's the end of the day, the 4 younger kids are in bed and John went to pick up Abby and her friend Aija from Choir practice.
A few months ago Abigail was invited to sing in a youth choir for General Conference. AMAZING opportunity. The 9 Taylorsville Stakes were invited, but each ward could only have 5 youth. We had just moved, and our Bishop knew John sang. So he asked us if Abby did too. So, the Bishop recommended her. The Stake Presidency makes the final decisions and she was chosen. She has had a ton of music to memorize and had rehearsals 1 - 2 times a week for a couple of months. As soon as we found out, we asked our Bishop if he could get us 4 tickets to that session of Conference (we wanted to be able to take Michael and Emma). He said he would do his best. In the end, our ward was not given any tickets for that session. We found out that Abby would receive one ticket for a family member. I had decided that John should go. We asked around and were hoping for another ticket so I could go, but have not had any luck.
So, last night, it is like 8:30, kids are in bed, I am in my pj's and John went to pick up Abby and Aija. There is a knock at the door and I open it and have no idea who it is. She knows me and introduces herself. She is the choir manager for this choir that Abby is in. She told me she had one extra ticket and she really felt like she was supposed to give it to me!!! She drove to our house to give it to me and was so so nice about it. We totally felt our prayers were answered. But, the story continues because we found out, this was not an EXTRA ticket. It was HER ticket. I totally started crying and wanted to give it back to her. But, I couldn't because I know I need it. I don't know why, but John and I really feel like we are both supposed to be there for a reason. And not just to see our oldest sing :)
This is just the beginning of knowing the Lord is watching us and will bring us miracles!
So, I stayed home with Isaiah yesterday since he had a fever. I always miss church when I can't go. I need the spiritual upliftment each Sunday. But I know John needed it more. So, it's the end of the day, the 4 younger kids are in bed and John went to pick up Abby and her friend Aija from Choir practice.
A few months ago Abigail was invited to sing in a youth choir for General Conference. AMAZING opportunity. The 9 Taylorsville Stakes were invited, but each ward could only have 5 youth. We had just moved, and our Bishop knew John sang. So he asked us if Abby did too. So, the Bishop recommended her. The Stake Presidency makes the final decisions and she was chosen. She has had a ton of music to memorize and had rehearsals 1 - 2 times a week for a couple of months. As soon as we found out, we asked our Bishop if he could get us 4 tickets to that session of Conference (we wanted to be able to take Michael and Emma). He said he would do his best. In the end, our ward was not given any tickets for that session. We found out that Abby would receive one ticket for a family member. I had decided that John should go. We asked around and were hoping for another ticket so I could go, but have not had any luck.
So, last night, it is like 8:30, kids are in bed, I am in my pj's and John went to pick up Abby and Aija. There is a knock at the door and I open it and have no idea who it is. She knows me and introduces herself. She is the choir manager for this choir that Abby is in. She told me she had one extra ticket and she really felt like she was supposed to give it to me!!! She drove to our house to give it to me and was so so nice about it. We totally felt our prayers were answered. But, the story continues because we found out, this was not an EXTRA ticket. It was HER ticket. I totally started crying and wanted to give it back to her. But, I couldn't because I know I need it. I don't know why, but John and I really feel like we are both supposed to be there for a reason. And not just to see our oldest sing :)
This is just the beginning of knowing the Lord is watching us and will bring us miracles!
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