Well, I think I better get some details down before I forget things.
I previously mentioned that we had cancelled our appointment with an out-of-state doctor. That doctor was kind enough to do a phone appointment with us and Dr. Wright came into John's hospital room to be on the call with us. This was Dec 28, I believe. John wasn't talking much at this point. He was really out of breath and exhausted. He mostly kept his eyes closed while talking to people. Anyway, the two doctors spoke with us. The other doctor said he read John's files and would have done all the same regimens that we had tried. He said that the new proposed regimen only needed one of the three drugs. So the drug we were fighting to get approved wasn't going to be a big deal, because the one that was most important in the regimen had been approved.
The 30th, John said that he felt good and was ready to go on a walk around the 4th floor with me when I got back to the hospital from spending the night at my grandmas. So I got up to the 4th floor and I thought we were about to go on a walk when the team of doctors came in and told me there wasn't anything else they could do for John. His liver numbers hadn't improved enough after placing a stent. They told me they were going to send us home on hospice care. I was stunned is an understatement. Didn't they see that John was more alive than he was yesterday? John called Dr. Wright and then we waited for her to call back. She said that if John's bilirubin came down to a 4 that she would give him chemo. So we decided to go home with palliative care (which ended up not being able to accept John as a patient over the weekend (because of holiday staffing I think), so we just ended up with home care). The plan was to have home health for the weekend and since Monday was a holiday, we would check labs again on Tuesday. John's siblings all came to Salt Lake and spent some time with John and I in the hospital and then they all came and hung out at our house over the weekend. Our ward members brought the sacrament to our house and I think all of John's siblings and maybe his parents all came into our loft and had the sacrament one last time together.
Tuesday morning came with a ton of snow. We piled into the van to take John to go get his labs. Our van got stuck at the stop sign. I think 6-8 neighbors tried to help us get out. John, who had zero strength or energy, went and got a tow rope and he drove the truck to tow the van in a loop back to our garage. Then we hopped in the truck and went to get labs. (Another last minute babysitter and canceled babysitter happened here.)
Daniel was supposed to have speech therapy that same afternoon. John's doctor called with lab results. Bilirubin was worse than it was when we left the hospital. Hospice was agreed upon. Speech therapy was cancelled. John spoke with each of the boys one-on-one to explain what was about to happen. A neighbor took the boys and I stayed with John in our room. Wednesday morning, I spent doing one-on-one time with the boys. Grandma and Grandpa Clayton came and took the boys for the afternoon. I spent several more hours with John. He wasn't talking or moving much on Wednesday. By Thursday he was not responding much.
The whole 2 weeks we spent in the hospital included a lot of pain management. Wednesday night (Jan 4) John was so tired and just wanted to sleep. He was so peaceful, he said he felt fine. And then about every hour throughout the night, he asked for help with pain management. He was always on top of all his medication and always knew what to take when, but Wednesday night he started getting confused about medication and I had a hard time getting him to understand what I could and could not give him each time he asked.
Back to Tuesday night. Tuesday John called his family, some of mine came to visit and John said his good-byes to everyone. Talk about a hard thing to sit and listen to your husband call and say good-bye. I was scared to fall asleep thinking I would miss his last breath. He promised me he would still be there in the morning, though. Wednesday night, I didn't sleep much because of the medication needs. I think my sister's family who lives in Idaho were the only ones who hadn't said good-bye yet. My sister and brother-in-law got here Thursday. They played with our kids most of the afternoon while other visitors came and went. John was moaning in pain a lot that day too, but I couldn't get him to take any medicine. Hospice came and helped calm him down and I called my sister and her husband to come up. I was so tired that night. I had thought so many times in the last two days that John had taken his last breath. My sister, brother-in-law, John's parents and I decided to take shifts through the night so we could all sleep and also try to keep John comfortable. I fell asleep just after 10. My sister woke us all up at maybe 10:40. My sister, brother-in-law, John's parents and I were all in the room and watching John as he took his last breath.
John Michael Clayton, 32, beloved husband, father, son, brother, and
friend, was born February 22, 1984 to Dan & Mary Ann Clayton in
Burley, Idaho. He passed away late on January 5, 2017 after a brave,
hard and long fight with recurrent Stage 4 Alveolar Rhabdomyosarcoma.
He
grew up on a dairy farm where a deep love of hard work and the outdoors
was instilled. He enjoyed working and even bragged that he was such a
good worker and started at such a young age that he would change his own
diapers while out working. He has many fond memories of working with
siblings and extended family while on the farm. He loved four-wheelers,
soccer, and scouts in his teenage years. He always enjoyed bringing
friends to his house, both while growing up and in college.
He
served an LDS Mission in Malaga, Spain, and always spoke of taking Kelli
there someday. Right after his mission in 2005 at BYU, he unknowingly
met the love of his life, Kelli. Over the next two years, they played a
lot of racquetball and ate a lot of Frosties. Kelli left for Cape Cod in
the spring of 2007 and surprised John by keeping in touch with him.
Over the summer they found that they loved each other. In November 2007
they were sealed for time and eternity in the Monticello UT LDS Temple.
John
graduated from BYU in May 2009 in Construction Management. His brother,
Curtis, introduced him to construction and John found that he had a
passion for building. He found a job at Westland Construction and had so
much fun working on so many projects. After a couple years there, he
started working closely with Stan Houghton and learned and watched how
to be a good, honest, smart businessman as well as a family man. John
formed many close friendships at Westland and loved those he worked
with.
John took great care in taking care of Kelli and their dear
three boys as they came along. His boys knew dad could fix anything and
that dad would always share candy, hot chocolate and good food. John
took care of anybody who asked for help or advice. He was full of wit,
wisdom, and mischief. He loved sharing what he loved. He especially
loved gathering with his siblings and always enjoyed those who were
around and missing those who couldn’t make it.
While John wasn’t a
huge Rascal Flatts’ fan, he was fond of fast cars and freedom. He was
able to buy and enjoy both a Pontiac G8 GXP and a Cadillac CTSV.
Accelerating super fast always put a smile on his face. His boys all
loved riding in dad’s fast cars.
He had a passion for traveling
and loved asking people where they planned to travel next. He loved his
trips to Fiji, Puerto Rico, Alaska, Panama, Russia, and all over the US.
Most movies we watched, he could say that he’d been there. He
especially enjoyed taking his boys to Disneyland, the beach,
Yellowstone, camping, and New England.
John is preceded
in death by his dear Grandpa and Grandma Clayton and Uncle Jack Clayton.
He is survived by his sweetie, Kelli, his 3 amazing boys: Carson,
Thomas, and Daniel; his parents who were also his best friends, Dan and
Mary Ann Clayton; siblings he adored and loved: Chelsea (Andy) Bingham,
Curtis (Shauna) Clayton, Kimberly (Adam) Pierson, and Brent (Ashleigh)
Clayton; Grandma and Grandpa Gerratt; his parents-in-law, Warren and
Beverly Thomas; siblings-in-law; many adored nieces, nephews, aunts,
uncles and cousins.
Our six-year old Carson says, “We all love him.”
Funeral
services will be held at 11:00 a.m., Thursday, January 12, 2017 at the
Canyon Pointe Ward Chapel, 2162 East Canyon Road, Spanish Fork, Utah.
Friends may call at the Berg Mortuary of Provo, 185 East Center Street,
Wednesday, January 11 from 6-8:00 p.m. and at the church Thursday from
9:30-10:45 a.m. prior to services. Interment, East Lawn Memorial Hills.
Condolences may be expressed at www.bergmortuary.com.
In lieu of flowers, please send donations to www.kyleesdancingangels.org.
Sunday, January 22, 2017
Tuesday, December 27, 2016
Gallbladder
I posted partial updates on facebook, so now I'll do my best to get the full
story on here. Of course the full story is still only a partial story,
but I'll try to remember all the main stuff.
John had 3 transfusions in a short amount of time. Because of that, Dr. Wright said that he should stop his targeted therapy pills. So John stopped those on Dec 10th. The reason could have been that they weren't working and the cancer was interfering with his blood production. Or the reason could have been that the pills were working but causing his blood counts to drop super low. The reason didn't matter though because the transfusions were getting closer together.
During this time, we found out that Dr. Wright is leaving Huntsman in January. We found that out basically the same time she decided John should stop his pills.
At this point, she decided on a new chemo regimen that would be 3 different drugs that he would get 1-3 of them every week.
Because it takes so long to get new drugs approved through insurance, then I think this whole year as we started a new chemo, we went right to work getting the next option approved so that it would be approved by time we needed it. This cancer grows very quickly and we don't feel comfortable with too much time in between chemos. When he started the pills, though, it was close to the end of the year and our insurance was changing January 1, and scans were scheduled for mid-January. So we told the staff who works on preauthorizing everything not to worry about preauthorizing until our new insurance was set up. So now we are at the end of the year ready to start a new chemo and the whole preauthorize process hadn't even started. So now we had people scrambling to try to get our current and our new insurance to approve the new drugs so that once John starts the new regimen, he can continue without delay.
So, Monday the 12th, that is what our situation looked like.
Tuesday we ended up at an eye doctor appointment because John's eye had been swollen for a few days. He had pink eye so they said just wait it out.
Wednesday John felt pretty crummy. And Thursday morning he went to do labs to see if he could get another transfusion.
Scans originally scheduled for mid-January were moved to Thursday so that he could have scans before starting a new chemo. He tried to get a transfusion while he was at the hospital for scans, but it didn't work out with the last minute timing. So by now he had turned yellow and I was getting nervous because he was so sick and now yellow.
Friday morning he got a platelet transfusion and thought for sure he'd feel better within a few hours. Instead he felt worse and we went to the ER that night. The Provo ER transferred us up to inpatient at Huntsman. (No ambulance or anything, I just drove us up here.)
Somewhere in all of that we found an out-of-state doctor who squeezed us into his schedule. There aren't a lot of Sarcoma Oncologists that have both pediatric and adult experience. (I think most people reading this know John's cancer is super rare, but more common in kids than adults.) So John contacted the best two in the nation and one responded and agreed to see John before the end of the year.
So back-tracking to the hospital/ER visit. The symptoms looked like liver failure stuff, but with scans and tests, they decided it was John's gallbladder that was causing the symptoms. So they just watched John for a couple days and then Sunday they put in a gallbladder drain. Then they watched a couple more days and then put in a wider drain. During all this time, different teams of doctors were coordinating and taking things slow because A-that's how it goes in a hospital and B-John's immune system was down and he had low platelets so he wasn't really healthy enough to do anything else. John's liver enzymes and bilirubin came a little closer to normal after the drain was placed but then they just stayed abnormal but level for a few days. John and I decided if they weren't going to do anything but watch, that maybe he could go home. So we asked and they decided to let us come home since he had remained stable and they didn't think anything else they could do was going to benefit him.
So we went home on the 23rd. John stayed in bed basically all weekend. He never felt any better after getting home and couldn't keep any food down. He has bruises everywhere. His yellow didn't clear up at all. He had a hard time keeping his eyes open; he had a hard time sitting. His drain was supposed to be draining bile, but it was just blood draining out. He made it downstairs for a couple visitors. He made it up for a short part of our Christmas Eve party and Christmas eve pajama pictures with the boys. He made it downstairs to watch the boys open their gifts on Christmas morning. Then he spent the rest of the time in bed with a few visits from my family members and also the boys to show off their Lego creations.
The day after Christmas we headed back up to Huntsman. They gave him platelets last night. They've gotten his pain under control. He's gotten two units of blood today. They found a blockage in his intestines, so he got a shot and that helped clean things out. He still can't keep food down though. Now we are just taking things a day at a time. Right now we are waiting for an MRI of his abdomen, which will catch his liver/gallbladder area. After that the doctors will discuss what they see and let us know if they have any type of a game plan at that point.
So now as far as chemo goes, it's still in process of getting approved because it was initially denied and now is in the appeals process, I think. No chemo, though, until his liver/gallbladder issues are resolved. We cancelled our out-of-state appointment with the other Sarcoma Specialist.
Scans showed increased cancer activity in his skull/head. The cancer in his spine was unchanged.
I tried to mostly stay at the hospital during all of this, but I had a test I had planned to take on the 21st of December. John asked if I could take it sooner, so I ended up taking it one night while he was in the hospital that weekend before Christmas. Carson was SO excited about his Christmas concert, so I went to that. I'm able to sleep at my grandma's - she lives near Huntsman.
During all these last minute appointments and rescheduling appointments is a lot of childcare coordination. We have had a lot of help, early morning help, last-minute help, cancelled help and people letting us change plans on them a lot. I try not to schedule child-care help until I know what is going on and then by time I know what's going on and get things scheduled, it sometimes changes. So I try to impact as few people as possible with all of that, but obviously it still happens and people are still nice and still offer to help; I really appreciate that! The more help I coordinate when changes come up, the more stressful it is to make sure I contact everyone to make sure they all know the change of plans. So really and truly, thank you to everyone who lets me be a crazy person about scheduling and coordinating!
That is a really long post, I hope I got all the major details. Even though John felt miserable we were all so glad he was home for Christmas. Thank you all for your prayers, we feel them every day helping us get through all of this. The phrase it takes a village is sure true and we are blessed with the best village ever!
John had 3 transfusions in a short amount of time. Because of that, Dr. Wright said that he should stop his targeted therapy pills. So John stopped those on Dec 10th. The reason could have been that they weren't working and the cancer was interfering with his blood production. Or the reason could have been that the pills were working but causing his blood counts to drop super low. The reason didn't matter though because the transfusions were getting closer together.
During this time, we found out that Dr. Wright is leaving Huntsman in January. We found that out basically the same time she decided John should stop his pills.
At this point, she decided on a new chemo regimen that would be 3 different drugs that he would get 1-3 of them every week.
Because it takes so long to get new drugs approved through insurance, then I think this whole year as we started a new chemo, we went right to work getting the next option approved so that it would be approved by time we needed it. This cancer grows very quickly and we don't feel comfortable with too much time in between chemos. When he started the pills, though, it was close to the end of the year and our insurance was changing January 1, and scans were scheduled for mid-January. So we told the staff who works on preauthorizing everything not to worry about preauthorizing until our new insurance was set up. So now we are at the end of the year ready to start a new chemo and the whole preauthorize process hadn't even started. So now we had people scrambling to try to get our current and our new insurance to approve the new drugs so that once John starts the new regimen, he can continue without delay.
So, Monday the 12th, that is what our situation looked like.
Tuesday we ended up at an eye doctor appointment because John's eye had been swollen for a few days. He had pink eye so they said just wait it out.
Wednesday John felt pretty crummy. And Thursday morning he went to do labs to see if he could get another transfusion.
Scans originally scheduled for mid-January were moved to Thursday so that he could have scans before starting a new chemo. He tried to get a transfusion while he was at the hospital for scans, but it didn't work out with the last minute timing. So by now he had turned yellow and I was getting nervous because he was so sick and now yellow.
Friday morning he got a platelet transfusion and thought for sure he'd feel better within a few hours. Instead he felt worse and we went to the ER that night. The Provo ER transferred us up to inpatient at Huntsman. (No ambulance or anything, I just drove us up here.)
Somewhere in all of that we found an out-of-state doctor who squeezed us into his schedule. There aren't a lot of Sarcoma Oncologists that have both pediatric and adult experience. (I think most people reading this know John's cancer is super rare, but more common in kids than adults.) So John contacted the best two in the nation and one responded and agreed to see John before the end of the year.
So back-tracking to the hospital/ER visit. The symptoms looked like liver failure stuff, but with scans and tests, they decided it was John's gallbladder that was causing the symptoms. So they just watched John for a couple days and then Sunday they put in a gallbladder drain. Then they watched a couple more days and then put in a wider drain. During all this time, different teams of doctors were coordinating and taking things slow because A-that's how it goes in a hospital and B-John's immune system was down and he had low platelets so he wasn't really healthy enough to do anything else. John's liver enzymes and bilirubin came a little closer to normal after the drain was placed but then they just stayed abnormal but level for a few days. John and I decided if they weren't going to do anything but watch, that maybe he could go home. So we asked and they decided to let us come home since he had remained stable and they didn't think anything else they could do was going to benefit him.
So we went home on the 23rd. John stayed in bed basically all weekend. He never felt any better after getting home and couldn't keep any food down. He has bruises everywhere. His yellow didn't clear up at all. He had a hard time keeping his eyes open; he had a hard time sitting. His drain was supposed to be draining bile, but it was just blood draining out. He made it downstairs for a couple visitors. He made it up for a short part of our Christmas Eve party and Christmas eve pajama pictures with the boys. He made it downstairs to watch the boys open their gifts on Christmas morning. Then he spent the rest of the time in bed with a few visits from my family members and also the boys to show off their Lego creations.
The day after Christmas we headed back up to Huntsman. They gave him platelets last night. They've gotten his pain under control. He's gotten two units of blood today. They found a blockage in his intestines, so he got a shot and that helped clean things out. He still can't keep food down though. Now we are just taking things a day at a time. Right now we are waiting for an MRI of his abdomen, which will catch his liver/gallbladder area. After that the doctors will discuss what they see and let us know if they have any type of a game plan at that point.
So now as far as chemo goes, it's still in process of getting approved because it was initially denied and now is in the appeals process, I think. No chemo, though, until his liver/gallbladder issues are resolved. We cancelled our out-of-state appointment with the other Sarcoma Specialist.
Scans showed increased cancer activity in his skull/head. The cancer in his spine was unchanged.
I tried to mostly stay at the hospital during all of this, but I had a test I had planned to take on the 21st of December. John asked if I could take it sooner, so I ended up taking it one night while he was in the hospital that weekend before Christmas. Carson was SO excited about his Christmas concert, so I went to that. I'm able to sleep at my grandma's - she lives near Huntsman.
During all these last minute appointments and rescheduling appointments is a lot of childcare coordination. We have had a lot of help, early morning help, last-minute help, cancelled help and people letting us change plans on them a lot. I try not to schedule child-care help until I know what is going on and then by time I know what's going on and get things scheduled, it sometimes changes. So I try to impact as few people as possible with all of that, but obviously it still happens and people are still nice and still offer to help; I really appreciate that! The more help I coordinate when changes come up, the more stressful it is to make sure I contact everyone to make sure they all know the change of plans. So really and truly, thank you to everyone who lets me be a crazy person about scheduling and coordinating!
That is a really long post, I hope I got all the major details. Even though John felt miserable we were all so glad he was home for Christmas. Thank you all for your prayers, we feel them every day helping us get through all of this. The phrase it takes a village is sure true and we are blessed with the best village ever!
Tuesday, November 29, 2016
Cancer Pain
John had fevers a couple nights in a row, and a lot of pain all over. So we went to the ER yesterday. We left our house at 8:40 am and got home about 10:30 pm. A HUGE thank you to our wonderful friends and neighbors who took care of the boys while we were gone so long! (And after watching our boys all afternoon/evening, one of them even cleaned our house. And others have done this too.We seriously have the kindest neighbors!)
The ER ran blood work and UA to see if they could find an infection. So far they haven't found anything, but sometimes that can take a few days.
They did find that his red blood counts and his platelets were low, so he got a transfusion of each. That helped him feel better. Chest X-ray didn't show any infection in lungs.
About mid afternoon, we remembered to also tell the doctor that along with all the pain, John could barely move his left leg. So she did an x-ray on his leg. X-Ray didn't show any fractures. She asked John do move his leg for her. She was able to pinpoint where the most pain was. She ordered an MRI try to get a better picture of what was going on right there. We didn't want to mask the issue if we could figure out for sure what was causing it and get it treated correctly. We really appreciated that she was willing to get to the bottom of it. After the MRI results came back, she said it was cancer right in that area. So we left with 2 different types of transfusions and a steroid to hopefully help his leg.
They were also able to get his pain level from an 8 to a 5, so that is nice. Hopefully it will keep going down as he has learned some more ways to manage it.
We aren't sure about all these pain issues that keep popping up and turning out to be cancer pains, but the tumor on John's forehead seems to be shrinking, so we will keep hoping that this new drug is working.
The ER ran blood work and UA to see if they could find an infection. So far they haven't found anything, but sometimes that can take a few days.
They did find that his red blood counts and his platelets were low, so he got a transfusion of each. That helped him feel better. Chest X-ray didn't show any infection in lungs.
About mid afternoon, we remembered to also tell the doctor that along with all the pain, John could barely move his left leg. So she did an x-ray on his leg. X-Ray didn't show any fractures. She asked John do move his leg for her. She was able to pinpoint where the most pain was. She ordered an MRI try to get a better picture of what was going on right there. We didn't want to mask the issue if we could figure out for sure what was causing it and get it treated correctly. We really appreciated that she was willing to get to the bottom of it. After the MRI results came back, she said it was cancer right in that area. So we left with 2 different types of transfusions and a steroid to hopefully help his leg.
They were also able to get his pain level from an 8 to a 5, so that is nice. Hopefully it will keep going down as he has learned some more ways to manage it.
We aren't sure about all these pain issues that keep popping up and turning out to be cancer pains, but the tumor on John's forehead seems to be shrinking, so we will keep hoping that this new drug is working.
Thursday, November 10, 2016
Time for an update
So, in September, John started a new chemo Yondelis (aka Trabectedin). It was a 24 hour infusion once every 3 weeks. He did that probably the middle of September and then again the first part of October. He seemed to do ok with the infusion the first time. He had muscle pain everywhere for a day or two. He was sick enough to stay in bed starting the third day, and by the fifth day he said he was feeling better. But then that same day, he got a bad cold or something. So he ended up going back to bed for probably another week. During his cold, he decided that we should go on a short trip after his next dose. So we planned a 4 day trip. Then he started feeling even better and we extend our trip. Then he found out his brother he wants to see on our trip is going to be out of town, so he adds a couple more days to the trip so we can visit with his brother. So now our trip is 12 days long. Then he gets his next dose. He didn't get better by day 5. On day 3 he started having major chest pain. We think it might go away by the next day and it doesn't. So we go to the ER to run all the heart attack tests. They also checked for blood clots in lungs, pneumonia and other stuff. They can't find anything wrong so we come home. Then we kind of keep thinking it's going to go away. By Thursday, the chest pain is still bad. So we go to a different ER. They run all the same tests plus a couple more. They decided that John's heart looks healthy and that the pain lines up with cancer in his sternum. That night on the way home from the ER, we decided that we would still leave for our trip the next day. By time we made it home we decided to postpone our trip to leave on Monday. Suddenly, on Friday morning John feels better. So we changed our flights again and left Saturday morning. (So now our trip is 11 days long.) Our 5 year old exclaimed that, "this is the happiest day of my life!" (Keep in mind, we are leaving to look at leaves in New England and earlier this year we went to Disneyland....) Just look at that smile!
Aside from John's lingering side effects that cleared up by day 5, we had a perfect trip. The kids were good, the weather was perfect, the leaves were incredible!!
We went to Boston, Cape Cod, the White Mountains in NH, we also made sure to drive over the border into Maine so we could add an extra state to our list. We also went through Vermont, Connecticut, New York, New Hampshire, New Jersey, and Pennsylvania. We counted our layovers in Baltimore and Chicago for 11 days 11 states.
John and I went to the Sears Tower in Chicago and these two have been wanting to go to the top of a skyscraper since then. So this was super exciting for them to go to the top of the Rockefeller Center!
Scans were scheduled for Oct 25th. So we flew into Salt Lake on Oct 25th, dropped John off at Huntsman. One of our many wonderful neighbors let me drop off 3 kids who had been awake for 14 hours at her house. She watched the kids so Carson could make it to his first ever basketball practice/game. I went back to Huntsman to pick up John.
Oct 26th, we were luckily still on East Coast Time so our 7 am MST appointment was bearable. The scan results weren't completed yet, but based on blood tests the doctor recommended changing treatment. The blood tests showed elevated protein levels that indicate eventual muscle/heart/kidney failure if he stayed on that treatment. So that automatically means that it's not a long-term option to stay on, so we may as well start on something new. By the end of the day, the scan results were back, the doctor called to let John know that it appeared the Yondelis was probably working, but still recommended switching drugs at this point to avoid the muscle failure. She said there were a couple new spots on the scans but some of the old spots had decreased in activity and/or size. So the theory is that the new spots grew in between chemo treatments and that the Yondelis was likely working.
By the end of October, the targeted therapy pills were approved (after we appealed the denial). So we got the Votrient (aka Pazopanib) pills. We decided to wait a couple days to start those so that we could take a trip to celebrate John's dad's birthday. John started those pills on Oct 31. He spent the first week on those pills pretty much in bed, but the side effects are starting to even out a little bit and he has been up and pretty healthy/active during the days.
During our trip John started having night sweats. Once he started the Votrient, he spiked a fever, so we let the doctor know. She said if he had more, to come in to get checked out for infection. So that night, he spiked a fever again. So we ended up in the hospital ER again. Seth, the PA, wanted to admit him overnight, but we talked him into letting us just come back the next day. That night, John still had night sweats but no fever. So we went back to the same ER to have them double check things. They let us come home without keeping us there very long. Night sweats are still happening, but no more fevers. They determined that the night sweats are most likely caused from tumors.
Seth was one of our many favorites on the 4th floor. He transferred to a different unit, but somehow ended up filling in the one time this year we have spent the night on the 4th floor. And then he just happened to be filling in in the ER last week when we were there. Anyway, it was nice to see someone who's been part of our journey from the beginning.
We have had a lot of help from a lot of friends and neighbors. We so appreciate the kindness shown to us as we navigate through all this craziness. It sure makes things easier with a support system like ours! Thank you all for your continued prayers and support!
Aside from John's lingering side effects that cleared up by day 5, we had a perfect trip. The kids were good, the weather was perfect, the leaves were incredible!!
We went to Boston, Cape Cod, the White Mountains in NH, we also made sure to drive over the border into Maine so we could add an extra state to our list. We also went through Vermont, Connecticut, New York, New Hampshire, New Jersey, and Pennsylvania. We counted our layovers in Baltimore and Chicago for 11 days 11 states.
Scans were scheduled for Oct 25th. So we flew into Salt Lake on Oct 25th, dropped John off at Huntsman. One of our many wonderful neighbors let me drop off 3 kids who had been awake for 14 hours at her house. She watched the kids so Carson could make it to his first ever basketball practice/game. I went back to Huntsman to pick up John.
Oct 26th, we were luckily still on East Coast Time so our 7 am MST appointment was bearable. The scan results weren't completed yet, but based on blood tests the doctor recommended changing treatment. The blood tests showed elevated protein levels that indicate eventual muscle/heart/kidney failure if he stayed on that treatment. So that automatically means that it's not a long-term option to stay on, so we may as well start on something new. By the end of the day, the scan results were back, the doctor called to let John know that it appeared the Yondelis was probably working, but still recommended switching drugs at this point to avoid the muscle failure. She said there were a couple new spots on the scans but some of the old spots had decreased in activity and/or size. So the theory is that the new spots grew in between chemo treatments and that the Yondelis was likely working.
By the end of October, the targeted therapy pills were approved (after we appealed the denial). So we got the Votrient (aka Pazopanib) pills. We decided to wait a couple days to start those so that we could take a trip to celebrate John's dad's birthday. John started those pills on Oct 31. He spent the first week on those pills pretty much in bed, but the side effects are starting to even out a little bit and he has been up and pretty healthy/active during the days.
During our trip John started having night sweats. Once he started the Votrient, he spiked a fever, so we let the doctor know. She said if he had more, to come in to get checked out for infection. So that night, he spiked a fever again. So we ended up in the hospital ER again. Seth, the PA, wanted to admit him overnight, but we talked him into letting us just come back the next day. That night, John still had night sweats but no fever. So we went back to the same ER to have them double check things. They let us come home without keeping us there very long. Night sweats are still happening, but no more fevers. They determined that the night sweats are most likely caused from tumors.
Seth was one of our many favorites on the 4th floor. He transferred to a different unit, but somehow ended up filling in the one time this year we have spent the night on the 4th floor. And then he just happened to be filling in in the ER last week when we were there. Anyway, it was nice to see someone who's been part of our journey from the beginning.
We have had a lot of help from a lot of friends and neighbors. We so appreciate the kindness shown to us as we navigate through all this craziness. It sure makes things easier with a support system like ours! Thank you all for your continued prayers and support!
Saturday, September 10, 2016
Chemo Starting Up Next Week
A HUGE thank you to all those who joined our fast last week! We so appreciate your faith and prayers on our behalf!
Insurance denied the targeted therapy pills. So while we fight them on that (it could take up to 12 weeks to get another decision), John is going to start a chemotherapy next week. It will be an IV for 24 hours at Huntsman. Since we are starting this one, we are going to do a couple rounds of it to see if it's effective. So we are off next week to visit our old friends on the 4th floor of Huntsman Hospital.
And for those wondering what we did fun while we were in between treatments... Wednesday night, John and I took my kayaks on the Provo River for my birthday! Then last weekend we went camping at Lake Cleveland with most of John's family. It's crazy how much time and energy can go into planning a family reunion when you have a year's notice. Somehow we pulled one off in about 3 days. We found out Monday that John wasn't going to be on chemo for the week. By Wednesday we decided that we should go camping. I think maybe by Wednesday night, everyone had an invitation. Somehow, we ended up having all of John's siblings (and most of their families) show up to camp with us Friday night.
Insurance denied the targeted therapy pills. So while we fight them on that (it could take up to 12 weeks to get another decision), John is going to start a chemotherapy next week. It will be an IV for 24 hours at Huntsman. Since we are starting this one, we are going to do a couple rounds of it to see if it's effective. So we are off next week to visit our old friends on the 4th floor of Huntsman Hospital.
And for those wondering what we did fun while we were in between treatments... Wednesday night, John and I took my kayaks on the Provo River for my birthday! Then last weekend we went camping at Lake Cleveland with most of John's family. It's crazy how much time and energy can go into planning a family reunion when you have a year's notice. Somehow we pulled one off in about 3 days. We found out Monday that John wasn't going to be on chemo for the week. By Wednesday we decided that we should go camping. I think maybe by Wednesday night, everyone had an invitation. Somehow, we ended up having all of John's siblings (and most of their families) show up to camp with us Friday night.
Wednesday, August 31, 2016
I think we are starting Plan G....
John had scans last week and we got the results Monday from the doctor. Cancer has spread from his spine to other bones including his front right skull and a new tumor behind his right eye.
To be blunt, we are hoping for a miracle at this point. While the doctor has a few more chemotherapy options, she doesn't have any left in her arsenal specifically studied for treatment of rhabdomyosarcoma. If I understand correctly, the next option we are starting has had success in other sarcomas - either in shrinking tumors or at least stopping them from growing. Even though sarcomas are all the same family, the different sub-types are so different it's hard to say that because it works for one sarcoma that it will work for the rest.
This next drug John will try is actually a "targeted therapy" rather than a chemotherapy. Targeted Therapy attacks cancer cells where chemotherapy attacks all fast growing cells. We are going to try out this drug for about 2 months to see if it will work in John's case. If it does, then just like last time, we will continue it as long as it seems to be working. If it doesn't work, we have other options. Those other options just haven't been studied specifically for Rhabdomyosarcoma.
Early in John's diagnosis I read blogs from other cancer families. They were so insightful and said so much about the emotions and lessons learned during their cancer fights, and they so accurately described a lot of what I was feeling and going through. I have mostly kept this blog very specific to the facts around treatment, but this time I thought I'd give a glimpse of my thoughts and emotions. I'm not as fluent in emotional writing as other bloggers, but here's an attempt:
While this is hard news to hear, and it definitely made me cry (as many have seen), I'm still hopeful. I read a book called The 10 Habits of Happy Mothers by Meg Meeker, she quotes someone in her book who says, "I expect nothing, but I hope for everything...and believe in God's Goodness." Sometimes I may let my hopes become my expectations, but when I run into that I try to remind myself of this quote and keep hoping for the vision to see the good in whatever happens. Sometimes the good is not immediate, but if I'm waiting for the good then the hard parts don't seem so hard because I know I'm fighting for something worthwhile. I'm fighting for an eternal family. I know that an eternal family isn't going to be easily achieved and so I know have to step up to the plate and practice and improve until I'm able to hit that home run (which is a goal that takes an entire lifetime of work). Cancer has taught me that every thing that happens in a day is my practice time - and just like people practicing to be the best musician or athlete, I will have to get bruised and tired and sore to become my best self. I feel like the people King Mosiah gathered in The Book of Mormon. In Mosiah 25, Mosiah read some journals to his people. The people listening to the stories were filled with joy from parts of the story, with pain and anguish, they were filled with sorrow and cried, but "when they thought of the immediate goodness of God...they did raise their voices and give thanks to God" (vs 10). Our story has pain but it also has joy and while I can feel both those emotions, I give thanks to God for all He is teaching me and His patience with me when I take so long to learn some of the important lessons I need to be learning.
I have gone through all kinds of emotions during this fight. John and I try to stop and recognize what we are feeling in sorrow, pain, or confusion and then also acknowledge the blessings and good parts. We are not perfect at this, but we went into it knowing that it was a test of our faith and decided early on that we were not going to use cancer as an excuse to be anything less than our best. We know we have a lot to improve on to be our best selves, but this has been an awakening to things we can improve on. We are working harder now than we ever have before to live to be an eternal family*.
Thank you all for your continued prayers, love, and support. If any of you would like to join us in a fast this Sunday for this next treatment to be effective, we would appreciate it.
*We believe that life continues after mortal existence and that in the temple, we are sealed together for eternity. https://www.mormon.org/faq/mormon-families
Sunday, July 3, 2016
Scan update!
John just finished another week of chemo on Friday- he doesn't get too sick or nauseous from the drugs, just completely exhausted and drained. Thankfully he recovers pretty quickly and we are blessed and grateful to be able to go do some fun things.
 |
| Heber Valley Railroad |
 |
| Smores |
 |
| Hike to the Grotto |
 |
| Just hanging out |
Subscribe to:
Posts (Atom)