Next scans will still have both MRI and PET, but the dr. thinks that after that we will stop doing PET scans every time.
John is still doing good. Still working full-time. And still has energy to play with the boys after a full day of work.
Tuesday, November 10, 2015
3 Months Free!
John has zero doctor appointments on the books for the next three months. He had scans the last week in October, and the doctors still think everything looks good!
Next scans will still have both MRI and PET, but the dr. thinks that after that we will stop doing PET scans every time.
John is still doing good. Still working full-time. And still has energy to play with the boys after a full day of work.
Next scans will still have both MRI and PET, but the dr. thinks that after that we will stop doing PET scans every time.
John is still doing good. Still working full-time. And still has energy to play with the boys after a full day of work.
Friday, October 16, 2015
Heart
I don't think I ever posted the results from John's echocardiogram. His chemo drugs had a side effect that might have damaged his heart. Based on the echocardiogram after finishing chemo, his heart still looked normal. What a huge blessing!
Saturday, October 3, 2015
No Surgery
Never mind! The ENT oncologist we met with on Wednesday said he doesn't want to do another surgery. He said let's wait until the next scans at the end of the month and see what it shows, then maybe we would discuss the surgery again, but for now we aren't going to do anything. He says the doctors in the tumor board meeting didn't understand that a full resection had been done already. He says they thought it was just a biopsy. So no more doctor appointments until November. Scans are the 29th of October.
They took the stint out of his frontal sinuses on Wednesday.
They took the stint out of his frontal sinuses on Wednesday.
Monday, September 28, 2015
Pathology Results
Pathology has been back for a while now, but we still haven't wrapped our heads around the results. The pathology sample came back as being more mature rhabdomyosarcoma than what was initially found in John's neck biopsy. Because it is mature, the doctors agree it responded to treatment somehow. It's not common for them with this cancer to do a post-treatment biopsy, so they aren't sure what to think. Unless a new tumor pops up they are not planning to prescribe more chemo. The doctors on the tumor board did meet and discuss John's case last week. They agreed that John should go have resection surgery in his nose and try to get clean margins. My best understanding of that phrase is that they are going to keep taking tissue out of the same area of the primary tumor until they get tissue samples that do not have any rhabdo in them. It should be a pretty easy surgery with a quick recovery. The surgery has not been scheduled yet.
John has been working full-time since the end of June and only took off a few days for his last surgery. He is doing well. He is getting back some strength and energy. He installed can lights in our living room on his own last week. The heat still wears him out pretty quick, but early in the summer a few hours in the sun would put him in bed for two days. This week he went golfing one day and the next day was ready for a bike ride.
John has been working full-time since the end of June and only took off a few days for his last surgery. He is doing well. He is getting back some strength and energy. He installed can lights in our living room on his own last week. The heat still wears him out pretty quick, but early in the summer a few hours in the sun would put him in bed for two days. This week he went golfing one day and the next day was ready for a bike ride.
Thursday, September 10, 2015
Haircut
Sept 9 was John's first haircut after ending chemo back in May. He still has a bald spot on the back of his head, but the rest of his hair was getting crazy as it grew. One of our friends guessed it was because his hair was growing back curly. He couldn't ever fix it, so he finally cut it last night. For a while it grew as a mow-hawk, but as it got a little bit longer it was just all crazy.
Tuesday, September 1, 2015
Post Surgery Check-up
We found out why they straightened John's nose and what that meant. He had a deviated septum which made it hard for the doctors to do the surgery. The side of his nose that they were doing the surgery on was the small side. So after working around it for a little bit, the doctor decided he could do a better job at the surgery if he fixed John's septum. So they moved bone and tissue, maybe cartilage (I can't remember), then stapled it all back together. So John has several staples along both sides of his septum that will dissolve on their own. No wonder his nose felt broken!
Inside John's nose was still pretty swollen and irritated from the surgery so he hadn't drained very much. So the doctor used a vacuum to clean everything out. John is on strict orders to do a nose rinse 3 times (or more) per day, plus Nasonex. No blowing his nose yet for another week. The doctor hopes this cleaning from yesterday will help everything heal better.
No pathology results yet on the tissue they removed from the surgery. Also, yesterday the doctor said that he did find the tumor, it was just super small compared to what they were guessing. It was just a tiny bump so they did remove the whole thing.
Inside John's nose was still pretty swollen and irritated from the surgery so he hadn't drained very much. So the doctor used a vacuum to clean everything out. John is on strict orders to do a nose rinse 3 times (or more) per day, plus Nasonex. No blowing his nose yet for another week. The doctor hopes this cleaning from yesterday will help everything heal better.
No pathology results yet on the tissue they removed from the surgery. Also, yesterday the doctor said that he did find the tumor, it was just super small compared to what they were guessing. It was just a tiny bump so they did remove the whole thing.
Wednesday, August 26, 2015
Sinus Surgery
John's nurse tried to schedule the port and feeding tube removals during the sinus surgery. John checked with her three times to see if it was possible. She kept saying that they weren't able to work it out. So Thursday of last week, we went to get out the feeding tube and port. We got all checked in and went over everything with the resident doctor. Then the doctor came in and said she saw the note in the system that John would rather do all of this while he was under anesthesia the next day. She said she didn't know where the communication error came in, but she is working tomorrow and completely able and willing to do the removals during John's surgery. So we left and John went back to work on Thursday. Then Friday, we went back to the hospital for the sinus surgery and tube/port removals. The surgery lasted just under three hours, and was supposed to be an outpatient procedure. The surgery got a late start, so it didn't get over until about 9 pm. The doctor came out and told me the surgery went well; he explained everything they did and said the nurses should come get me in about half an hour. About 11 pm, I found out they had decided to keep John overnight. So John got one last stay with the nurses waking him up every 15 minutes all through the night. It was John's first time on the 5th floor at Huntsman, so now he has visited all six floors of the hospital. Saturday afternoon John was discharged.
The surgery was to unblock the left frontal sinus. The doctor said once the blockage was removed that the sinus should drain like a popped blister. Instead, the drainage was about the consistency of a gummy bear so the doctors had to clean it out. The ended up putting a tint up there to hold everything open. They also cleared out his sinuses in his cheeks next to his nose. They found that his nose was crooked, so they fixed that as well. The doctor said that once John is recovered from the surgery, he should notice a major improvement in his ability to breathe. So far John just feels like he got punched in the face by Mike Tyson.
Because they were doing the sinus surgery and were already up his nose, they took a biopsy of the tumor site. There were actually two sites to biopsy in his nose: first, the tumor site; second, the site that showed activity on his scans. Both sites looked like normal tissue during the surgery so the doctor had to guess where the sites were. That's really good news, because we have recently seen scopes of his nose and we could tell where the tumor had been. So that's great that it wasn't an obvious spot any more! Now John just has a couple follow-ups from this surgery and scans at the end of October.
The surgery was to unblock the left frontal sinus. The doctor said once the blockage was removed that the sinus should drain like a popped blister. Instead, the drainage was about the consistency of a gummy bear so the doctors had to clean it out. The ended up putting a tint up there to hold everything open. They also cleared out his sinuses in his cheeks next to his nose. They found that his nose was crooked, so they fixed that as well. The doctor said that once John is recovered from the surgery, he should notice a major improvement in his ability to breathe. So far John just feels like he got punched in the face by Mike Tyson.
Because they were doing the sinus surgery and were already up his nose, they took a biopsy of the tumor site. There were actually two sites to biopsy in his nose: first, the tumor site; second, the site that showed activity on his scans. Both sites looked like normal tissue during the surgery so the doctor had to guess where the sites were. That's really good news, because we have recently seen scopes of his nose and we could tell where the tumor had been. So that's great that it wasn't an obvious spot any more! Now John just has a couple follow-ups from this surgery and scans at the end of October.
Monday, August 17, 2015
Monday, August 10, 2015
Scan update part 2
John received a message from Dr. Wright today (8/10/2015) saying, "We
reviewed your scans this morning at our tumor board. All agreed
everything looks good on the scans, no concern for recurrent tumor."
Last week when we had met with Dr. Wright and Dr. Poppe, the tumor board had not met yet. Now they have and they all agree with what was said last week. We are excited that there is kind of a built-in second opinion to our care at Huntsman, and we are excited that they all agree that everything looked good on the scans.
Here's a picture of John hiking over the weekend.
Last week when we had met with Dr. Wright and Dr. Poppe, the tumor board had not met yet. Now they have and they all agree with what was said last week. We are excited that there is kind of a built-in second opinion to our care at Huntsman, and we are excited that they all agree that everything looked good on the scans.
Here's a picture of John hiking over the weekend.
Tuesday, August 4, 2015
Scan Update
John had his follow-up scans last week and we met with the doctor yesterday to get the results. The doctor still hopes that the cancer is gone. She said she was really happy about everything. His June scans showed activity in his nasal cavity. His July scans showed less activity in his nasal cavity. The doctor said that the activity isn't in the same spot as the tumor. So it could be tissue healing or something from his congestion, or a hundred other things. She said it doesn't look like something to be concerned about. So she encouraged John to get his port out and then set the schedule for scans to be every 3 months for the next 2 years and then after that it will be every 4-6 months for a while and then they will gradually be less often. She said she encourages getting the port out now, but he could leave it in for however long he wants. She said 6-9 months is kind of the typical time frame to see something if we are going to see a recurrence in the cancer, so some people leave it until they pass that marker. She doesn't feel the need to do that, she recommends just being done with it, and if we have to put it back it, it's simple to do. We have decided to just be done with it too.
John is going to get both his port and feeding tube out. We are hoping that the doctors/surgeons can work it all out and do everything during the sinus surgery in a couple weeks.
The radiation doctor has been optimistic about John's saliva glands fully recovering until yesterday. Yesterday he said that there could still be improvement over the next several months, but that there is a possibility that this is the best they are going to get. Right now, John has to drink a lot while he is eating to swallow his food. It makes eating a real chore. But he has been eating more and using the feeding tube a lot less. Some foods are even tasting good to him now. The doctor offered a prescription that may or may not make a difference for him, John decided for now it's not worth taking a pill three times a day for.
John has been feeling so much better and has been back to work for just over a month now.
John is going to get both his port and feeding tube out. We are hoping that the doctors/surgeons can work it all out and do everything during the sinus surgery in a couple weeks.
The radiation doctor has been optimistic about John's saliva glands fully recovering until yesterday. Yesterday he said that there could still be improvement over the next several months, but that there is a possibility that this is the best they are going to get. Right now, John has to drink a lot while he is eating to swallow his food. It makes eating a real chore. But he has been eating more and using the feeding tube a lot less. Some foods are even tasting good to him now. The doctor offered a prescription that may or may not make a difference for him, John decided for now it's not worth taking a pill three times a day for.
John has been feeling so much better and has been back to work for just over a month now.
Wednesday, July 22, 2015
Sinuses
John has had sinus problems for a long time. His first doctor who did the biopsy to diagnose the cancer said John had chronic sinus problems. But as we were learning about the cancer at the same time as this sinus problem, we just focused on getting rid of the cancer. Fast forward 11 months and now it's bad enough to need surgery. I don't know that anybody knows for sure, but it seems probable that radiation caused scar tissue that blocked off one of John's sinuses. Because the sinus with the blockage is between the brain and eye, the doctors are going to go in and remove the blockage so the sinus can drain normally. There has been buildup accumulating in that sinus and if it continues or ever gets infected, it could quickly do some damage (to either the eyes or the brain). The surgery should be pretty simple and will be an outpatient procedure. They will just go through the nostril to perform the surgery, so there shouldn't be any stitches or anything. John will have to be pretty still for a week and then by the end of two weeks should be recovered. The surgery is scheduled mid-August.
Wednesday, July 8, 2015
Update
We are feeling like a normal family again. We went to Burley for a weekend. John went back to work. The boys are fighting and playing. I'm trying to make dinner every night. Daniel is walking around and climbing on things.
John worked every day last week, except for Friday (which was a holiday). He has even started going back to meetings in Salt Lake. He thought he wouldn't be ready for those for a while, but so far he has gone to two and has been doing fine. He is still tired, but he doesn't go right to bed when he gets home.
During treatments, John kept saying that he would never go through all of it again. This morning, he said he felt good enough that if he had to, he could go through it all again if he knew he could feel this good again at the end of it. We are not planning or thinking about doing it all again, but that is just how good he finally feels. (Sounds like women and pregnancy, right?) It was so good to hear him say that! It took 48 days for him to feel good enough to say that. That's a lot earlier than I was expecting to hear anything like that. We are still working on strength and energy recovery.
He has started eating dinner almost every night. He has gone out for lunch with co-workers several times. I think we are on our way to getting the feeding tube out.
John's hair is starting to come back. He now has to shave more than once every 6 months.
John worked every day last week, except for Friday (which was a holiday). He has even started going back to meetings in Salt Lake. He thought he wouldn't be ready for those for a while, but so far he has gone to two and has been doing fine. He is still tired, but he doesn't go right to bed when he gets home.
During treatments, John kept saying that he would never go through all of it again. This morning, he said he felt good enough that if he had to, he could go through it all again if he knew he could feel this good again at the end of it. We are not planning or thinking about doing it all again, but that is just how good he finally feels. (Sounds like women and pregnancy, right?) It was so good to hear him say that! It took 48 days for him to feel good enough to say that. That's a lot earlier than I was expecting to hear anything like that. We are still working on strength and energy recovery.
He has started eating dinner almost every night. He has gone out for lunch with co-workers several times. I think we are on our way to getting the feeding tube out.
John's hair is starting to come back. He now has to shave more than once every 6 months.
Wednesday, July 1, 2015
Tuesday, June 23, 2015
Hopefully Cancer Free
Last week, we heard news that the doctors were kind of puzzled by John's scans. The MRI report showed no cancer, the PET showed activity in nose and neck. Monday morning a team of doctors (including two sarcoma radiation oncologists, an interventional radiologist, an orthopedic surgeon specializing in sarcoma, Dr Wright, and a couple more) reviewed the scan reports as well as the scans. Dr. Wright said that after reading the reports, she looked at the scans and wasn't worried about John having any cancer left. She said based on the report, she was underwhelmed when she saw the scans. The activity the report mentioned on the PET was very hard to find on the scans. The NP said that the overall consensus in the room of doctors was that there was no worry about any cancer being left behind. She said there was some dispute about removing the residual tumor in John's nose. The ENT said that it was a minor surgery that could be easily done, but he doesn't think it's necessary as it won't change anything in John's overall cancer picture. Some of the doctors thought if it was so easy then it should just be done. They ended up leaving the decision to John. Possibly the only side effect would be a risk of losing his sense of smell, so we decided not to do anything with it for now.
Although the doctors think the cancer is probably gone, the scans did show some activity of something, so they can't say for sure that it is gone. Something could mean an infection, post-radiation activity, nothing, or recurrent cancer. Typically our schedule would be scans every three months, but since these scans didn't show for sure that there was nothing left, we are doing scans in six weeks to re-evaluate and hopefully confirm the hope that the cancer is actually gone!
Thank you everyone for your love and support!
Although the doctors think the cancer is probably gone, the scans did show some activity of something, so they can't say for sure that it is gone. Something could mean an infection, post-radiation activity, nothing, or recurrent cancer. Typically our schedule would be scans every three months, but since these scans didn't show for sure that there was nothing left, we are doing scans in six weeks to re-evaluate and hopefully confirm the hope that the cancer is actually gone!
Thank you everyone for your love and support!
Friday, June 12, 2015
Eating
John has had two meals by mouth this week! A burger from McDonald's earlier this week and tonight some scrambled eggs with a burrito. He has been having green drinks zero to three times a week for the past month, as well as occasionally trying bites of different things. Until this week, it's only been a bite here and there, so it's pretty exciting that he ate two whole meals! He said that the eggs were not disgusting and that that is his new level for something to taste good. The chemo made most things taste disgusting. Earlier in treatment, that side effect only lasted a few days. After his last dose, this is about how long it has taken to get over that side effect.
He has started feeling a little closer to normal this week, but he does still run out of energy pretty fast. He went to work for almost a full day earlier this week, but he was pretty wiped out when he got home. The boys asked when dad was going to get out of bed and they weren't sure how to react when I said that he wasn't in bed, he was at work.
Next week, we are going to start working on small steps to help regain some of John's strength. We are also going to have scans on Monday and finally know for sure if all the tumors are all gone. If the tumors are gone, then the port can come out at the next doctor appointment. He won't need sedation or anything, they'll just take it out in the doctor's office. His feeding tube will still stay in though - AT LEAST until he is eating 2400 calories/day by mouth, possibly until he has gained a certain amount of weight back.
June 15th are the scans. We should know the results some time on the 17th!
He has started feeling a little closer to normal this week, but he does still run out of energy pretty fast. He went to work for almost a full day earlier this week, but he was pretty wiped out when he got home. The boys asked when dad was going to get out of bed and they weren't sure how to react when I said that he wasn't in bed, he was at work.
Next week, we are going to start working on small steps to help regain some of John's strength. We are also going to have scans on Monday and finally know for sure if all the tumors are all gone. If the tumors are gone, then the port can come out at the next doctor appointment. He won't need sedation or anything, they'll just take it out in the doctor's office. His feeding tube will still stay in though - AT LEAST until he is eating 2400 calories/day by mouth, possibly until he has gained a certain amount of weight back.
June 15th are the scans. We should know the results some time on the 17th!
Monday, June 1, 2015
June
John had a hard time recovering from his last dose of chemo. He was starting to get better from it and then he got mouth sores again. Ugh! Luckily it doesn't interfere with his eating since he is still using his feeding tube, but talking is painful right now. His immune system blood counts are still really low as of today. Once his counts recover, then his mouth sores should go away pretty quick. By the end of this week, John's counts should be recovered and we won't have to worry about any more hospitalizations! (While his counts are still low, there is a possibility of another fever that he would need to be in the hospital to get antibiotics.) Another blood test on Thursday will hopefully show that his immune system is back. Here is a picture of his last dose of chemo and his lifetime max of doxorubicin getting pushed into his veins.
Wednesday, May 20, 2015
Last Dose
John's chemo was supposed to be Monday and Tuesday, but there was a communication error in scheduling, so we ended up getting the chemo today and tomorrow. It worked out great though, we were able to spend Tuesday celebrating Daniel's first birthday.
Scans are scheduled for mid-June. Next appointment with the doctor is end of June. At that time, we can take out his port if we want. The feeding tube is staying in until he can eat 2000 calories by mouth. Up until John gets over this dose of chemo nobody has worried too much about his nutrition. Everybody has just worried about him getting any calories at all. Now we are going to try to get a nutritionist to write a meal plan to help John recover better. Hopefully, it's all food I can cook for him
Long-term side effects that we discussed with the NP today are that he should return to his normal self, but aged 10 years. John has had neurapathy in his fingers and toes; the NP thinks he might get most, if not all, of his feeling back. John still has crazy sweating and chills that nobody has figured out a cause for yet. Hopefully we can get that figured out sooner, rather than later. It keeps John from getting good sleep. The NP thinks that John's dizziness will go away when chemo goes away. She thinks his taste will come back eventually.
The boys have just started asking, "When is dad going to stop being sick?" So this is a good time for this last dose!
Scans are scheduled for mid-June. Next appointment with the doctor is end of June. At that time, we can take out his port if we want. The feeding tube is staying in until he can eat 2000 calories by mouth. Up until John gets over this dose of chemo nobody has worried too much about his nutrition. Everybody has just worried about him getting any calories at all. Now we are going to try to get a nutritionist to write a meal plan to help John recover better. Hopefully, it's all food I can cook for him
Long-term side effects that we discussed with the NP today are that he should return to his normal self, but aged 10 years. John has had neurapathy in his fingers and toes; the NP thinks he might get most, if not all, of his feeling back. John still has crazy sweating and chills that nobody has figured out a cause for yet. Hopefully we can get that figured out sooner, rather than later. It keeps John from getting good sleep. The NP thinks that John's dizziness will go away when chemo goes away. She thinks his taste will come back eventually.
The boys have just started asking, "When is dad going to stop being sick?" So this is a good time for this last dose!
Sunday, May 10, 2015
No Fever!
Thank you everyone for your prayers! John did not get a fever last week! He got his half-day of chemo on Monday (vincristine) and then was able to stay home all week. He was pretty exhausted and a little nauseaus, but overall it was a good week. He felt best when we went out for drives. For those who know John pretty well, he loves to find best prices and coupon stack. Not many deals are worth doing that for, but he found two awesome deals this past week, so we spent one day getting our Staples' deals. We spent another going to a couple different Lowe's. We drove up the canyon one day and to Eureka another. Daniel was really nice to us even though we kept him in his car seat so much!
Last time John was in the hospital for his overnight chemo, we met with Dr. Poppe (the radiation oncologist). He came to John's room instead of having us come downstairs to his office. He said that he would double check next time we go to his office, but he is pretty confident that the dose of radiation to John's saliva glands was low enough that John should regain use of his saliva glands. One of John's problems with eating has been his dry mouth. When John reads about radiation to neck and mouth, he has found some patients whose saliva glands start working after a few weeks, some whose come back after a couple months, or a couple years, or never. So that was nice to hear the doctor say John's might come back soonish.
This week is John's week off. Next week he will go back in for his last four doses of chemo (the overnight stay). It will take probably 10 -14 days to get over the chemo effects. It also can take a couple weeks for the chemo to finish its job, so the scans will be some time in June to find out for sure if we are done with chemo!
Last time John was in the hospital for his overnight chemo, we met with Dr. Poppe (the radiation oncologist). He came to John's room instead of having us come downstairs to his office. He said that he would double check next time we go to his office, but he is pretty confident that the dose of radiation to John's saliva glands was low enough that John should regain use of his saliva glands. One of John's problems with eating has been his dry mouth. When John reads about radiation to neck and mouth, he has found some patients whose saliva glands start working after a few weeks, some whose come back after a couple months, or a couple years, or never. So that was nice to hear the doctor say John's might come back soonish.
This week is John's week off. Next week he will go back in for his last four doses of chemo (the overnight stay). It will take probably 10 -14 days to get over the chemo effects. It also can take a couple weeks for the chemo to finish its job, so the scans will be some time in June to find out for sure if we are done with chemo!
Tuesday, April 28, 2015
May 19th Goal
We met with Dr. Wright yesterday before getting admitted for chemo. The schedule she gave us for the next two rounds (and hopefully the last) will put John's "last" dose of chemo on May 19th. That is also the day our baby turns one year old! Doctor's orders are to not get a fever and stay on that schedule, so we will see how well John's body can follow orders. On May 19th, we won't actually know if that is going to be the last dose or not, but we hope so! Two to three weeks after that dose, John will have his scans to see if all the tumors are gone. If the scans do not have any traces of cancer, then we are done with this cycle of chemo! And for a while we will just have scans every three months. Within 6 months, Dr. Wright hopes John's exhaustion is mostly gone. Within a year, he should have a lot of his strength back. Dr. Wright was pleased with John's weight. He owes his weight stability to the feeding tube still; it has continued to be the best way for him to get his calories. She wants him to keep gaining weight and then start slowly building strength back up.
Sunday, April 19, 2015
Fever
John did so great after his last chemo! He got in 3 partial days of work from Wednesday night to Friday. Wednesday was his third day in a row of chemo. Typically at that point he is laying in bed in the dark and not very coherent. On Wednesday he went to his office to work before coming all the way home from the hospital. Then he went to the office again for an hour on Thursday and he worked from home on Friday. It was so unusual and great! We thought for sure with him doing that great that he would avoid a fever this time around. But then on Tuesday John ended up in bed all day. He said that he didn't feel fever sick, just chemo sick. Then Wednesday he started getting feverish so we headed to Huntsman. By Wednesday night close to midnight, John's fever broke and when he woke up Thursday he felt great again. He still had to stay in the hospital until Friday, because once you get admitted with a fever, you have to stay there until your blood counts come up. Once again they didn't ever find an infection.
The next round of chemo was never scheduled because no one knew what to expect after his I/E week since John's body is always full of surprises. So now that John has had his fever and his blood counts are on the rise, we should hear from the doctor tomorrow to see when she wants to do the next dose.
I think it's been a full month since radiation ended. Thankfully, most of the radiation side effects have gone from extreme to either mild or gone. John will go in soon for thyroid testing to see if his thyroid was messed up during radiation. They had given him thyroid medication that would do his thyroid's job and hopefully put his thyroid to sleep during radiation so it wouldn't be affected. Now he has been off the medication for a month, so his body, I guess, should have had time to go back to normal. So they will test that soon so we can find out what happened, if anything, to his thyroid.
The next round of chemo was never scheduled because no one knew what to expect after his I/E week since John's body is always full of surprises. So now that John has had his fever and his blood counts are on the rise, we should hear from the doctor tomorrow to see when she wants to do the next dose.
I think it's been a full month since radiation ended. Thankfully, most of the radiation side effects have gone from extreme to either mild or gone. John will go in soon for thyroid testing to see if his thyroid was messed up during radiation. They had given him thyroid medication that would do his thyroid's job and hopefully put his thyroid to sleep during radiation so it wouldn't be affected. Now he has been off the medication for a month, so his body, I guess, should have had time to go back to normal. So they will test that soon so we can find out what happened, if anything, to his thyroid.
Saturday, April 4, 2015
Last Long Week of Chemo!
We were going to have John's next set of progress scans this month to check the progress he made during radiation, but because he has had about a month delay in his chemo schedule, he won't have scans this month.
On Monday John will go into the hospital for his last long week of chemo. (ifosfamide and etoposide) After that he will finish 3 more weeks of chemo and then have his progress scans. These 4 weeks of chemo will have recovery breaks in between them (ie - one week on chemo, two weeks off chemo, two weeks on, one week off, one week on*). So the four weeks will take about two months to finish. Hopefully the fevers stay away so that we can stick to that schedule without delays and get to the scans sooner. At that point, he will get scanned again. If the scans come back clean, we will be DONE! If the scans show any trace of cancer, the doctor will decide how to proceed with the final rounds of treatment.
Done means that chemotherapy will stop and John will go in every three months for scans to check for cancer.
John's feeding tube has been wonderful. The first week with it was painful from the surgery, but now he doesn't notice it as often. His throat is healing from the radiation burns, so he has an easier time swallowing. His taste buds are messed up, though. Food doesn't taste the way it should. He is eating about a meal a day, but it takes a lot of effort to eat food that tastes like moldy cardboard. He needs to keep eating what he can by mouth to keep all his muscles and digestive systems working. But the feeding tube is a nice alternative for his other two meals a day. The "food" is sent from home health and is basically a high-protein drink that we feed him with a syringe into the feeding tube. For those of you who are curious what it looks like, you can request a picture from John.
*When I say "one week on chemo" I mean that in a week period he will get one treatment-whether that is his half-day, two-day or four-day.
On Monday John will go into the hospital for his last long week of chemo. (ifosfamide and etoposide) After that he will finish 3 more weeks of chemo and then have his progress scans. These 4 weeks of chemo will have recovery breaks in between them (ie - one week on chemo, two weeks off chemo, two weeks on, one week off, one week on*). So the four weeks will take about two months to finish. Hopefully the fevers stay away so that we can stick to that schedule without delays and get to the scans sooner. At that point, he will get scanned again. If the scans come back clean, we will be DONE! If the scans show any trace of cancer, the doctor will decide how to proceed with the final rounds of treatment.
Done means that chemotherapy will stop and John will go in every three months for scans to check for cancer.
John's feeding tube has been wonderful. The first week with it was painful from the surgery, but now he doesn't notice it as often. His throat is healing from the radiation burns, so he has an easier time swallowing. His taste buds are messed up, though. Food doesn't taste the way it should. He is eating about a meal a day, but it takes a lot of effort to eat food that tastes like moldy cardboard. He needs to keep eating what he can by mouth to keep all his muscles and digestive systems working. But the feeding tube is a nice alternative for his other two meals a day. The "food" is sent from home health and is basically a high-protein drink that we feed him with a syringe into the feeding tube. For those of you who are curious what it looks like, you can request a picture from John.
*When I say "one week on chemo" I mean that in a week period he will get one treatment-whether that is his half-day, two-day or four-day.
Friday, March 27, 2015
First week off Radiation
On Monday, I took John to the hospital and a friend took two of my kids to the doctor. John was admitted to the hospital for possible pneumonia. Carson had pink eye and Thomas had an ear infection. John's doctors were unable to find the source of his infection but he definitely had one this time. By Tuesday afternoon John was looking a lot better and on Wednesday he felt a lot better. Thursday he was able to come home. On Thursday I took Daniel to the doctor and he had both an ear infection and pink eye.
John sure confused the doctors during his hospital stay. His ANC count only drops if he has had chemo. He has not had chemo for 3 or 4 weeks. On Monday his ANC was 4600 and on Wednesday it was only 700. No one had a guess as to why his blood would do that. So he actually stayed an extra day just so they could watch what his blood was going to do. It stayed the same, so the doctors decided it probably wasn't going to drop any more, so they let him come home. The lowest his blood count can be in order to leave the hospital is 500.
Some good news- John was able to eat his first solid meal today in over a month. With radiation to his head and neck, it has been too painful for him to drink even water (he's been on IV fluids to stay hydrated). He's lost over 50 pounds since the diagnosis and 20 pounds in March alone. Nothing he ate tasted normal but at least he is able to eat again and get the nutrition he needs to help his body heal a little faster.
Some good news- John was able to eat his first solid meal today in over a month. With radiation to his head and neck, it has been too painful for him to drink even water (he's been on IV fluids to stay hydrated). He's lost over 50 pounds since the diagnosis and 20 pounds in March alone. Nothing he ate tasted normal but at least he is able to eat again and get the nutrition he needs to help his body heal a little faster.
We will meet next week with Dr. Wright to decide when to start the next round of chemo. I keep saying that we are about to do our last long week of chemo. Now March is almost over and we still haven't gotten over this mile-marker. Hopefully John's body will recover quickly so he can finally get over this last long one.
Thursday, March 19, 2015
Feeding Tube
John was supposed to get the feeding tube last week, but since his white blood count was so low the surgery was postponed. He is getting it inserted today.
Radiation will be over tomorrow. Within a couple weeks he should start getting over the radiation side effects. His neck should get better sooner than his nose because they didn't radiate his neck this week. They didn't radiate his neck the last week of treatment because on his second set of scans the tumors throughout his neck had shrunk enough that it wasn't necessary to radiate as many doses as his nose tumor.
Radiation will be over tomorrow. Within a couple weeks he should start getting over the radiation side effects. His neck should get better sooner than his nose because they didn't radiate his neck this week. They didn't radiate his neck the last week of treatment because on his second set of scans the tumors throughout his neck had shrunk enough that it wasn't necessary to radiate as many doses as his nose tumor.
Tuesday, March 10, 2015
Home Away From Home
We are in the hospital for another fever. When they started giving John less chemo and he stopped getting fevers for a few weeks, we were so excited! And then John got a fever and it went away pretty fast, so we didn't come to the hospital. And then that happened again; and now this is the third time that happened, except that the next night the fever came back again. So Monday we came to Huntsman for radiation and then got admitted to the hospital. It was a long day. Radiation was at 10:30 and then we met with Dr. Poppe to discuss how miserable John's side effects are. Dr. Poppe was trying to coordinate some stuff with Dr. Wright, so we were in Dr. Poppe's office for at least an hour. Dr. Poppe was very compassionate and helpful. Then John got labs drawn and a chest x-ray to check for infections. Then we waited for an hour and a half for him to get admitted to the Acute Care Clinic. Then we sat in the ACC for 3 or 4 hours until the 4th floor had a bed available for him. And the whole day John didn't talk much (his voice doesn't work because the radiation has affected his vocal chords) so we played charades and made-up sign language to communicate, so mostly we sat in silence. At least the ACC waiting room had puzzles to work on. And then thank goodness for Seinfeld reruns that play back-to-back while we were in the ACC waiting. I knew it could have been a long day so I had brought a book, but it wasn't very interesting.
John's list of side effects for the doctor yesterday were dry mouth, thick mucous causing choking, congestion, mouth sores, too much pain to eat. They gave him Mucinex which has made a huge difference in just one day. They scheduled putting a feeding tube to be put in him. The congestion and pain are still up and down. But overall he feels a lot better than he did over the weekend.
John's doctors all like to check his mouth for mouth sores and especially because he has two major ones that are bothering him now, Dr. Poppe checked on them yesterday. Dr. Poppe always tells John to say 'ah' when he's checking on the sores. I'm not sure whether or not all the other doctors have him say 'ah'. Both the last time and this time Dr Poppe has told John to say 'ah', John says 'ah', then Dr. Poppe says 'ah' a little louder than John did and so John repeats 'ah' a little louder. I can't be sure, but it seems like Dr. Poppe has this twinkle in his eye likes it's a joke. They both sing 'ah' back and forth and keep getting louder. I try so hard not to laugh because to me, it feels like a joke, but maybe he really does need John to keep saying/singing 'ah'. Yesterday this little duet was even more funny to me because John could barely make noise when he was talking and so his ah's were a little higher pitched than normal since he had to strain so hard. He probably hit some high alto notes; I have never heard his voice go so high. And the doctor still tried to get him to go louder a couple times. Too bad I didn't record it, he probably could have landed a role in a play.
John's list of side effects for the doctor yesterday were dry mouth, thick mucous causing choking, congestion, mouth sores, too much pain to eat. They gave him Mucinex which has made a huge difference in just one day. They scheduled putting a feeding tube to be put in him. The congestion and pain are still up and down. But overall he feels a lot better than he did over the weekend.
John's doctors all like to check his mouth for mouth sores and especially because he has two major ones that are bothering him now, Dr. Poppe checked on them yesterday. Dr. Poppe always tells John to say 'ah' when he's checking on the sores. I'm not sure whether or not all the other doctors have him say 'ah'. Both the last time and this time Dr Poppe has told John to say 'ah', John says 'ah', then Dr. Poppe says 'ah' a little louder than John did and so John repeats 'ah' a little louder. I can't be sure, but it seems like Dr. Poppe has this twinkle in his eye likes it's a joke. They both sing 'ah' back and forth and keep getting louder. I try so hard not to laugh because to me, it feels like a joke, but maybe he really does need John to keep saying/singing 'ah'. Yesterday this little duet was even more funny to me because John could barely make noise when he was talking and so his ah's were a little higher pitched than normal since he had to strain so hard. He probably hit some high alto notes; I have never heard his voice go so high. And the doctor still tried to get him to go louder a couple times. Too bad I didn't record it, he probably could have landed a role in a play.
Today I watched John get set up for radiation. I saw the lasers that they use to line him up just right. I saw him get situated on the table. I watched the nurses attach his mask to the custom headrest. And then I saw John's body laying still on a table. He looked just like a dead body in a morgue, except creepier because his mask made him look zombie-ish. But it was cool to see the machine rotate while they were getting him lined up. I had pictured just a small part of the machine moving, but most of the machine actually rotates 360°.
I have to thank my neighbor who last minute agreed to watch our kids and then watched them longer than I had originally told her it would be!
Thursday, February 26, 2015
Almost Half Way!
Radiation side effects are hitting. John's throat feels like he is being choked. The doctors said that basically he has a sunburned throat from the radiation so when he swallows then both sides of his sunburned throat are rubbing against each other. It should get better and worse throughout radiation and then should go away. During the discussion with the radiation oncologist, I said that we didn't have potato chips at our house. Dr. Poppe said he wouldn't judge us if we did and that John can eat anything he wants so that he can maintain his weight during radiation. If John looses very much weight, his mask will have room in it for him to move. They don't want him moving during the radiation since it is aiming at very specific spots.
Because his last dose of chemo made him unable to keep up his blood pressure again, then he is going to be on precautionary fluids for a few days for the chemo he got yesterday. (He can get the fluids at home which is really nice.) Hopefully this keeps him upright when he is walking around.
Yesterday we met with Dr. Wright. I got a peak at John's schedule in the nurse's folder and asked for a copy of it. We got the original schedule when we started, but she had an updated one showing the weeks counted out. It was so exciting to see that out of 35 weeks we are on week 16! They told us there would be 35 weeks of treatment, but to plan on it taking a full year due to fevers/sickness and other delays. We were planning on October to October. I think we have only had two delays to the chemo so far and if we add in two more delays for the last half of treatment then we could be done by the end of summer!
Because his last dose of chemo made him unable to keep up his blood pressure again, then he is going to be on precautionary fluids for a few days for the chemo he got yesterday. (He can get the fluids at home which is really nice.) Hopefully this keeps him upright when he is walking around.
Yesterday we met with Dr. Wright. I got a peak at John's schedule in the nurse's folder and asked for a copy of it. We got the original schedule when we started, but she had an updated one showing the weeks counted out. It was so exciting to see that out of 35 weeks we are on week 16! They told us there would be 35 weeks of treatment, but to plan on it taking a full year due to fevers/sickness and other delays. We were planning on October to October. I think we have only had two delays to the chemo so far and if we add in two more delays for the last half of treatment then we could be done by the end of summer!
Dr. Wright's nurse also told us that sarcomas are really rare but rhabdomyosarcoma is a common enough type of sarcoma in children that it is really well studied and they know the best treatment plan to get rid of it. So that was reassuring to hear.
We knew that they were going to give John the lifetime max of his chemo drug called Doxirubicin before the end of treatment. I asked the nurse about the theory behind doing that because we have read that if the cancer comes back it's harder to treat. I wanted to make sure that if it comes back that they would be able to fight it just as aggressively. She showed me the 15 weeks of treatment that they had excluded from our treatment plan, which was a combo of two drugs. One of the drugs is one that John is getting (vincristine) and the other (dactinomycin) they were waiting to see if they could fight the cancer the first time without it. And it looks like they can, because they haven't used it and the cancer has responded so well. She said that dactinomycin will be instrumental in fighting the cancer if we have to end up doing treatments again without the doxirubicin.
So the schedule is next week 1/2 day infusion plus radiation. Then the 6 day hospital stay plus radiation (which will most likely be shortened to 4 days again). Then his final week of radiation. Then two weeks of half-day infusions and then more scans (end of April/first part of May). After that he will have about 4 more 2 day stays and 2 more half-days of chemotherapy.
John's side effects include nausea and fatigue which are my pregnancy side effects. So I keep telling him that he almost knows what it's like to be pregnant now. We were talking with a visitor yesterday during John's infusion who said that chemo nausea is worse than pregnancy nausea (at least for her). So now John's suspicion has been confirmed that chemo just might be worse than being pregnant.
So the schedule is next week 1/2 day infusion plus radiation. Then the 6 day hospital stay plus radiation (which will most likely be shortened to 4 days again). Then his final week of radiation. Then two weeks of half-day infusions and then more scans (end of April/first part of May). After that he will have about 4 more 2 day stays and 2 more half-days of chemotherapy.
John's side effects include nausea and fatigue which are my pregnancy side effects. So I keep telling him that he almost knows what it's like to be pregnant now. We were talking with a visitor yesterday during John's infusion who said that chemo nausea is worse than pregnancy nausea (at least for her). So now John's suspicion has been confirmed that chemo just might be worse than being pregnant.
Thursday, February 19, 2015
Radiation
Tomorrow will be the last day of week 2 of radiation. John's almost recovered from last week's chemo. He had a couple days that he couldn't keep his blood pressure up high enough to walk around without passing out. He fell again and hurt his knee and ankle but thankfully no broken bones this time. Last week he was inpatient for chemo and so he just had radiation each day he was there. This week we have drove back and forth to SL every day for radiation. We borrowed a book on cd from John's grandma (Unbroken by Laura Hildebrand) - that has made the drive something to look forward to.
Today, after exiting in SL, John recognized the truck in front of us and the people in the truck recognized John through their rear-view mirror. So we stopped by them at the light and John was able to chat with two of his friends from work. We are constantly reminded how blessed John is to work at Westland - there are so many great people there.
This week has actually been enjoyable for me. I like having something that gets us up and going for the day. During Tuesday's radiation, I planned a couple meals and then when we got home I went grocery shopping with a list - with actual meals planned. This is probably the first time I have done that since treatments have started. The past few months, I have only gone grocery shopping in the freezer isle or just to fill the shopping cart with diapers, formula and Powerade (which is one of the few things John can stand to drink with all the taste bud changes he has had with chemo). Then on Wednesday, I actually made dinner! I really don't think I have made a dinner in months. My family got together around the time of the diagnosis and made a bunch of freezer meals for us; so did John's mom. And we have had friends who have randomly dropped off meals for us. And half the time we are at the hospital, so we aren't even home to eat.
Today during radiation, I was working on the puzzle in the waiting room. Yesterday, I think I won a few games of Trivia Crack against two of my sisters :) It's nice that technology allows us to hang out and play games even when we are apart.
Today, after exiting in SL, John recognized the truck in front of us and the people in the truck recognized John through their rear-view mirror. So we stopped by them at the light and John was able to chat with two of his friends from work. We are constantly reminded how blessed John is to work at Westland - there are so many great people there.
This week has actually been enjoyable for me. I like having something that gets us up and going for the day. During Tuesday's radiation, I planned a couple meals and then when we got home I went grocery shopping with a list - with actual meals planned. This is probably the first time I have done that since treatments have started. The past few months, I have only gone grocery shopping in the freezer isle or just to fill the shopping cart with diapers, formula and Powerade (which is one of the few things John can stand to drink with all the taste bud changes he has had with chemo). Then on Wednesday, I actually made dinner! I really don't think I have made a dinner in months. My family got together around the time of the diagnosis and made a bunch of freezer meals for us; so did John's mom. And we have had friends who have randomly dropped off meals for us. And half the time we are at the hospital, so we aren't even home to eat.
Today during radiation, I was working on the puzzle in the waiting room. Yesterday, I think I won a few games of Trivia Crack against two of my sisters :) It's nice that technology allows us to hang out and play games even when we are apart.
Friday, February 13, 2015
Wednesday, February 11, 2015
Room with a view
Because of John's last fever, the doctors decided that they would give him an extra week before starting chemo back up. Then his mask mysteriously disappeared, so they had to make a new mask and re-map his radiation. So, chemo and radiation started today instead of Monday. Here's a picture of the mask. Anyone that wants to see it in person can come visit us in about 8 weeks and we will have it on display at our house.
Tuesday, February 3, 2015
Progress Scans!
Kelli has done such a great job writing so far I haven't felt the need to add anything to the blog. Of course she wanted me to be the one to share our good news so I'm sorry you don't get to read one of her good posts for this update. :)
Finally after all the delays with my last fever and hospital stay, we were able to get the first set of MRIs and PET/CT scans done since my diagnosis scans were done back in September. We got a partial report back from the radiologist last week but there was quite a bit of confusing medical jargon throughout the radiologist's summary so we decided to wait until our Dr. called yesterday with an interpretation to share any news.
Anyway, on to the good news, my oncologist told us yesterday that the scans looked better than expected and that my progress both surprised and impressed her. Such a relief to finally learn that we're making some progress and to realize that the umpteen days we've spent in the hospital and countless other sick days have been and are worth it! When I was diagnosed, I had a number of tumors throughout my upper body and head- here is the current status of each of them:
Arm bone - now GONE
Collarbones - all GONE
Forehead -Shrunk partially
Neck & Jaw - Shrunk significantly (75%+)
Back of skull - Shrunk partially
Nasal cavity - Shrunk significantly (75%+)
According to my doctor, my tumors are sized and positioned to respond well to the radiation treatments which are starting on Monday and will last for the next six weeks. I'm definitely not looking forward to the side effects that are going to come with radiation but I'm anxious to keep progressing.
Here are a couple of pictures of me before chemo and currently. Aside from the obvious Mr. Clean makeover the biggest outward change has been that tumor on the left side of my neck/jaw is now completely undetectable when I feel my face. It felt huge when we first started and was what tipped us off to the problem in the first place.
We still have a long ways to go but I'm excited to be able to share this great news with everyone. Thank you all for you continued love, prayers and support!
John
Finally after all the delays with my last fever and hospital stay, we were able to get the first set of MRIs and PET/CT scans done since my diagnosis scans were done back in September. We got a partial report back from the radiologist last week but there was quite a bit of confusing medical jargon throughout the radiologist's summary so we decided to wait until our Dr. called yesterday with an interpretation to share any news.
Anyway, on to the good news, my oncologist told us yesterday that the scans looked better than expected and that my progress both surprised and impressed her. Such a relief to finally learn that we're making some progress and to realize that the umpteen days we've spent in the hospital and countless other sick days have been and are worth it! When I was diagnosed, I had a number of tumors throughout my upper body and head- here is the current status of each of them:
Arm bone - now GONE
Collarbones - all GONE
Forehead -Shrunk partially
Neck & Jaw - Shrunk significantly (75%+)
Back of skull - Shrunk partially
Nasal cavity - Shrunk significantly (75%+)
According to my doctor, my tumors are sized and positioned to respond well to the radiation treatments which are starting on Monday and will last for the next six weeks. I'm definitely not looking forward to the side effects that are going to come with radiation but I'm anxious to keep progressing.
Here are a couple of pictures of me before chemo and currently. Aside from the obvious Mr. Clean makeover the biggest outward change has been that tumor on the left side of my neck/jaw is now completely undetectable when I feel my face. It felt huge when we first started and was what tipped us off to the problem in the first place.
We still have a long ways to go but I'm excited to be able to share this great news with everyone. Thank you all for you continued love, prayers and support!
John
Wednesday, January 28, 2015
Normal
Due to John's fever last week, his scans were rescheduled. He was able to get two MRIs done while he was in the hospital last week. His PET scan was rescheduled for yesterday and he was supposed to fast for it. He woke up and drake gatorade so he had to reschedule. Because of that, we had what could have been a typical Saturday for us pre-cancer. It was SO nice! We got up, had breakfast, took Daniel in for a well-child visit. We had lunch then went out shopping. We re-decorated and repurposed our loft last year. (Before/After - I have to show off my friend's work; she did an AMAZING job!) We are getting rid of a couch that no longer fits in our loft, so we went out shopping for a new chair. The boys LOVED trying out all the "comfy" couches, chairs and beds. They had so much find "finding" kitchens, washer/driers, beds, etc. It was probably better than Disneyland. I think they got the same thrill but we didn't have any lines to stand in. That is probably the most walking John has done in a few months, and he survived! When we got home the boys told us that we should have brought one of the comfy chairs home with us :) We didn't bring a new chair home, but we did find another person to pray for us. One of the salesmen at RC Willey has added us to his prayers.
Now I am sitting in the waiting room waiting for John to finish his PET scan. Earlier today we met with the ENT oncologist. He stuck a camera up John's nose and we all watched the tv screen to see the progress. The first time we saw it three months ago, it looked like a giant bunch of grapes stuck inside; today it looked more like a single blister. The ENT oncologist is thrilled with the progress the nose tumor has made. Surgery is still a possibility but he said it would be a simple out-patient procedure. He is not scheduling or planning a surgery right now though. We will have another follow-up with him mid-radiation. The nose tumor was the only one the ENT was following. So we will have a more complete evaluation from our doctor sometime after the PET scan report is finalized tomorrow.
Now I am sitting in the waiting room waiting for John to finish his PET scan. Earlier today we met with the ENT oncologist. He stuck a camera up John's nose and we all watched the tv screen to see the progress. The first time we saw it three months ago, it looked like a giant bunch of grapes stuck inside; today it looked more like a single blister. The ENT oncologist is thrilled with the progress the nose tumor has made. Surgery is still a possibility but he said it would be a simple out-patient procedure. He is not scheduling or planning a surgery right now though. We will have another follow-up with him mid-radiation. The nose tumor was the only one the ENT was following. So we will have a more complete evaluation from our doctor sometime after the PET scan report is finalized tomorrow.
Friday, January 23, 2015
Books
Thank you to whoever gave us the book Heaven Is Here by Stephanie Nielson. It's been a really good read during this hospital stay. For those of you who are unfamiliar with the book, it's about a mother who was in a plane crash that burned 80% of her body. It's about life before the crash, the crash, and her recovery. Our experience is obviously very different from hers. But there are some similarities and she describes a lot of how I feel sometimes from going through this cancer journey. But it's so encouraging to read a story of hope and joy and unconditional love. And it's also nice to cry for someone else's story instead of our own.
Wednesday, January 21, 2015
Fever #3
John was supposed to have his scans today to check his progress as well as to help the radiation oncologist decide on his radiation game plan.
BUT he started the morning with chills. When he gets chills, it's not just typical shivering; it's uncontrollable teeth chattering and full-body shaking. (This time, so far, there hasn't been the teeth chattering.)
To have a PET scan, they have you relax in a chair for an hour before you go into the scan. With John's shivers there wasn't any way that he could relax. So the scan was cancelled and we were instead sent to the Accute Care Clinic. (That's kind of like an emergency room except they have office hours and you have to have an appointment. It only took John's nurse 5 minutes to schedule an appointment for him though.)
The Accute Care Clinic got John's cultures, etc so they can search for an infection. Then they sent us up to a hospital room on the 4th floor. So now we are just hanging out waiting for the fever to go away and his white blood count to recover. His white blood count has to be at .5 or 500 before he can go home; right now he is at .25 or 250. So far, we haven't heard back if he has an infection but since he doesn't have symptoms of anything, then so far they are just guessing it's a neutropenic fever like his other ones.
We are hoping he will be able to get his scans before he leaves this hospital stay.
(Hi Kimberly :) )
BUT he started the morning with chills. When he gets chills, it's not just typical shivering; it's uncontrollable teeth chattering and full-body shaking. (This time, so far, there hasn't been the teeth chattering.)
To have a PET scan, they have you relax in a chair for an hour before you go into the scan. With John's shivers there wasn't any way that he could relax. So the scan was cancelled and we were instead sent to the Accute Care Clinic. (That's kind of like an emergency room except they have office hours and you have to have an appointment. It only took John's nurse 5 minutes to schedule an appointment for him though.)
The Accute Care Clinic got John's cultures, etc so they can search for an infection. Then they sent us up to a hospital room on the 4th floor. So now we are just hanging out waiting for the fever to go away and his white blood count to recover. His white blood count has to be at .5 or 500 before he can go home; right now he is at .25 or 250. So far, we haven't heard back if he has an infection but since he doesn't have symptoms of anything, then so far they are just guessing it's a neutropenic fever like his other ones.
We are hoping he will be able to get his scans before he leaves this hospital stay.
(Hi Kimberly :) )
Thursday, January 15, 2015
80% I/E
We are so close to finishing this week's treatment! John was very reluctant to get here since this is the hardest week on him. When we met with Dr. Wright (his sarcoma oncologist) she was pleased with how things were going. She really wants John's radiation and next round of chemo to be on time (Feb 2*), and she was glad that his 90% dose of the past two weeks had treated him so well. She is expecting good results on his scans next week. She said the same thing about it being more important to get a dose of chemo on time rather than to get the full dose on a delayed schedule. So she dialed this week's treatment to 80% of the original dose and one day less. This was great news and ALMOST made getting admitted for treatment easier on John. John was up and coherent up until Tuesday night. We had a lot of visitors Tuesday; thank you all who came, it was so good to visit. One of our visitors is a second cousin to John whose wife is going through treatments so we swapped cancer stories with them. Wednesday John tried sleeping all day. I thought today would be worse than yesterday, but John got up this morning for a walk and tried to be social for a little bit. But the exhaustion is hard to fight. My grandma came to visit me for breakfast and we walked up and down the stairs for a while. That was such a nice visit for me. My grandma is the best! She is always on call when we are in the hospital to bring us meals since the hospital food smells/tastes like the hospital. Last time we were here for this I/E treatment John had to be on oxygen and that helped him stay a little better because he couldn't smell the hospital smells. This time he hasn't needed oxygen but I brought a nose plug for him. He is on constant fluids and the smell of the fluids just take over everything - so the nose plug helps.
For entertainment, we still had some of the countdown chain leftover from our last stay, so we have been going through more of that - thank you again to all who contributed! I brought some photo albums to work on, so my file cabinet is a little less full. I had a work project I brought with me. I worked on a rubix cube. I caught up on some tv shows. We also got some 24 piece puzzles that friends and family had written notes on the back of; those were fun to read and our boys will love their new puzzle collection!
We are so excited to see John's brother and niece next week who are coming from TX to visit! And most of all I am excited to get Daniel back this weekend! I have only been with him for 2 days out of the last 2 weeks!! John's mom and her neighbors/friends/family have taken such good care of him, but we are SO ready to spend some time with him!
So our schedule update is that John is getting his last dose of chemo tonight and then fluids. We should be able to go home tomorrow. On the 21st, he will get all of his scans. On the 26th the entire team of doctors will meet to discuss John's progress and decide if anything in the treatment plan should change. So please everyone, pray for the doctors the morning of the 26th! I think that day is also a follow-up with the ENT oncologist (who is not a part of the big meeting). And then probably the 30th is a practice run for the radiation. Feb 2 will be radiation and another 5 day stay with chemo. And then I think he gets a week off chemo but he will have radiation every day except holidays and weekends until he gets, I think, 28 doses.
*Happy Birthday to Jill, Shauna, Turpin, Christina and anyone else sharing that birthday!
For entertainment, we still had some of the countdown chain leftover from our last stay, so we have been going through more of that - thank you again to all who contributed! I brought some photo albums to work on, so my file cabinet is a little less full. I had a work project I brought with me. I worked on a rubix cube. I caught up on some tv shows. We also got some 24 piece puzzles that friends and family had written notes on the back of; those were fun to read and our boys will love their new puzzle collection!
We are so excited to see John's brother and niece next week who are coming from TX to visit! And most of all I am excited to get Daniel back this weekend! I have only been with him for 2 days out of the last 2 weeks!! John's mom and her neighbors/friends/family have taken such good care of him, but we are SO ready to spend some time with him!
So our schedule update is that John is getting his last dose of chemo tonight and then fluids. We should be able to go home tomorrow. On the 21st, he will get all of his scans. On the 26th the entire team of doctors will meet to discuss John's progress and decide if anything in the treatment plan should change. So please everyone, pray for the doctors the morning of the 26th! I think that day is also a follow-up with the ENT oncologist (who is not a part of the big meeting). And then probably the 30th is a practice run for the radiation. Feb 2 will be radiation and another 5 day stay with chemo. And then I think he gets a week off chemo but he will have radiation every day except holidays and weekends until he gets, I think, 28 doses.
*Happy Birthday to Jill, Shauna, Turpin, Christina and anyone else sharing that birthday!
Saturday, January 10, 2015
Sick Kids
John's parents had our boys for our overnight stay last week. Both of John's sisters and their kids were able to spend the week with them. The boys had a lot of fun with their cousins! We got our boys back on Friday. On Saturday, Daniel was sick. On Sunday John's parents were still in Utah so they came and took Daniel back with them again. So we have been Daniel-less this whole week. This week, Thomas got strep and Carson has a virus. This week is also the same week during John's cycle that he got one of his fevers during his last cycle. So we have been working really hard to keep him from getting sick. So far it is Saturday morning and he has stayed healthy! We are hoping we make it through the weekend without any fevers (that was the goal of backing off the chemo a little).
On Monday of this week, John had his outpatient chemo. He tried it this time without nausea medicine and handled it really well. We also met with the radiation oncologist, Dr. Poppe. Dr. Poppe explored John's nose (NOT FUN!) and couldn't see any sign of a tumor or scar tissue!!! He was in a hurry to get us out the door because John had a ct scheduled to make his mask and mark his tattoos for the radiation. Once Dr. Poppe learned that he had a couple more minutes before John could go to the ct, then he sat back down and answered all of our questions. Then John went for his ct scan and had his mask made. The mask will help John stay in place during the radiation.
We found out that Dr. Poppe will review all of John's old and new scans (which will happen in 2 weeks) and make a plan for the radiation. Then he will have a dosimetrist review the plan and make sure that the equipment will actually give John the doses that Dr. Poppe prescribes. After they go back and forth and think they have a working plan, they will put a mannequin in the machine and give it John's treatment plan. The mannequin will read all the levels of radiation hitting it and then the team will know if the plan is going to give the proper therapy to John. They will adjust it however they need to and then when they have everything figured out they will do a "dry run" with John. Everything should be ready for John's radiation to start of Feb 2.
As long as John stays fever-free this weekend, Monday will start a long week of ifosfamide and etoposide. Then we get two weeks off. On Feb 2 we will have another long chemo week (of I/E) with the radiation starting.
Thank you everyone for your continued support and prayers!
On Monday of this week, John had his outpatient chemo. He tried it this time without nausea medicine and handled it really well. We also met with the radiation oncologist, Dr. Poppe. Dr. Poppe explored John's nose (NOT FUN!) and couldn't see any sign of a tumor or scar tissue!!! He was in a hurry to get us out the door because John had a ct scheduled to make his mask and mark his tattoos for the radiation. Once Dr. Poppe learned that he had a couple more minutes before John could go to the ct, then he sat back down and answered all of our questions. Then John went for his ct scan and had his mask made. The mask will help John stay in place during the radiation.
We found out that Dr. Poppe will review all of John's old and new scans (which will happen in 2 weeks) and make a plan for the radiation. Then he will have a dosimetrist review the plan and make sure that the equipment will actually give John the doses that Dr. Poppe prescribes. After they go back and forth and think they have a working plan, they will put a mannequin in the machine and give it John's treatment plan. The mannequin will read all the levels of radiation hitting it and then the team will know if the plan is going to give the proper therapy to John. They will adjust it however they need to and then when they have everything figured out they will do a "dry run" with John. Everything should be ready for John's radiation to start of Feb 2.
As long as John stays fever-free this weekend, Monday will start a long week of ifosfamide and etoposide. Then we get two weeks off. On Feb 2 we will have another long chemo week (of I/E) with the radiation starting.
Thank you everyone for your continued support and prayers!
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