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.
Tuesday, November 29, 2016
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!
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