After we came home from Rochester Tuesday, Derek has had a rough time with the replaced stomach tube. It had been leaking, causing pain off and on, and some stomach muscle spasms. In addition to that, we noticed his right face was dropping noticeably more than usual. We contacted the mayo clinic doctors/nurses.
Stomach Tube: We loosened the disk on the stomach tube, and it seemed to check out ok this morning. It is still leaking and causing him pain.
Increased facial dropping: We increased his dexamethasome back up to 4 mg/day which he was on back in November. This helped the facial droop some, BUT it caused the old hiccup problem. And these hiccups are hideous. They come at about 40 per minute, and do not let up much at all. Our only coping method was to decrease the dexamethasome again, because he reacts negatively to the hiccup-stopping meds we tried before. Hiccups also irritate the stomach tube site.
All this is going on, and this morning about 9a, he says he has the chills. About an hour later, he vomits, and so I start suspecting aspiration pneumonia or a negative effect from the new chemo which had caused nausea on the test dose (which he took a 2-month dose of it on Tuesday). He developed a fever over the next couple of hours, and when our mayo doctor heard that, he said get him in to be seen. We packed the van for a drive to mayo clinic, but when we got Derek off the couch to head to the van, he couldn't walk well at all, and began to vomit. So, we decided Peoria OSF emergency room was where we needed to go. Thanks to God for showing us clearly when the time came.
When we arrived, they said his temperature was 104.9! Also, his bloodcount was less than 1. There's lots of you out there that know what that means more than I do. To this point, we have never watched blood counts and never been concerned about Derek being more susceptible to stuff. We've never had to. So, needless to say they began putting lots of needles in and antibiotics, anti-nausea meds, fluids, and the x-rays were taken. As of now (things change a lot in these situations), he has sepsis and pneumonia. His blood pressure dropped to 78/50 and so they put a central line in for those type of meds and an artery line in his arm to continuously monitor blood pressure. This is nerve-wracking to say the least.
Derek has been ready to go home to heaven for so long, but when I'm actually watching him in a life-threatening situation, I marvel at his peace and long-suffering. We have many tears for his pain, and prayers for God's mercy. Please pray for God's will to be done. I would love to have many more long pleasant days with Derek, but he's been fighting so long and so hard, and he's so worn down. We love you and thank you for all you do!
Leann
Friday, April 25, 2014
Monday, April 21, 2014
Scan Results
I met with the Dr's today at Mayo's. Overall the results are pretty good and better than I expected. There might be growth in the lower skull but that is up for some question. The spine is the same. In the lungs, some spots have shrunk in size, some are a bit larger. So overall the doctor seems pretty happy with how things are going. We have never been given the expectation that any tumors would shrink, just staying the same and not growing is success. The doctor before he left said "you are tough". I replied that might be but I think it has something to do with all the people praying for us. He said, "don't change anything" He didn't want to admit what was responsible but the point is, don't quit praying now.
Regardless of the success of the current chemo, we are adding to it another medicine which has a time delayed release so they give it as a shot with time-span to coincide with my visits for MRI scans. I got a test injection today that made me feel sick to my stomach, which is not a normal side effect. Some anti-nausea medicine and I was feeling better. So hopefully I can manage this stuff cause usually the side effects are low and it is really no more hastle for me. This is the medicine that the ostreoscan said I was a candidate for.
A year has passed since my stomach tube was put in so we met with the nutritionist today. Tomorrow morning they will swap this out to a balloon style which is more flush with the skin. There is a little more risk of it coming out but I can replace it myself when it wears out.
They want me to come back in 2 months but this time are doing just the brain and C spine. So that means one MRI session instead of 2 and cuts the time down.
In summary, just keep praying and pray specifically that the new med does not make me too sick. Keep praying that my pain is not too great. So far meds have been keeping it under control.
Derek & Leann
Regardless of the success of the current chemo, we are adding to it another medicine which has a time delayed release so they give it as a shot with time-span to coincide with my visits for MRI scans. I got a test injection today that made me feel sick to my stomach, which is not a normal side effect. Some anti-nausea medicine and I was feeling better. So hopefully I can manage this stuff cause usually the side effects are low and it is really no more hastle for me. This is the medicine that the ostreoscan said I was a candidate for.
A year has passed since my stomach tube was put in so we met with the nutritionist today. Tomorrow morning they will swap this out to a balloon style which is more flush with the skin. There is a little more risk of it coming out but I can replace it myself when it wears out.
They want me to come back in 2 months but this time are doing just the brain and C spine. So that means one MRI session instead of 2 and cuts the time down.
In summary, just keep praying and pray specifically that the new med does not make me too sick. Keep praying that my pain is not too great. So far meds have been keeping it under control.
Derek & Leann
Sunday, April 6, 2014
40
I turned 40 on Friday. Above all I am thankful to still be here for my family. I think when you view every day as a bonus, then it is easier to deal with getting older. They had a lunch at work and then we had a party in the evening. It brought back many memories to have my friends and families together.
Health wise, I have been doing fairly good. Some days are up days, some are down. In general my pain is somewhat better. I tried totally going off the painkillers and couldn't totally do it but I am taking less than I was, sometimes just once a day. My eating has not been as good lately but I am still able to eat some by mouth. We are going back to Mayos in two weeks for routine scans. The next medicine was approved by our insurance so I may start on that then, we'll see what the MRI scans show. The next medicine is something they give by injection once a month, I might do that alone or in combination with pazoponib which I take every night. I have been able to go in to work almost full time. Add that to my time at home thinking and doing email and it exceeds full time.
I heard an account which agrees with my personal experience. Someone who is dealing with medical issues said he decided to open up and share more about what he was dealing with. In the last few weeks he has gotten a good report and the doctors don't have an explanation for the improvement. He credits the prayers of others. I think I have said this before but we have to be reminded of a simple truth. Others like to know specifically what they can pray for. We are rewarded when we have the humility it takes as this is not human nature. It aligns though with what the Bible teaches us. It's not always easy to share but we need too.
Please pray that the pain I do have would continue to abate and for wisdom in a couple weeks to make any decisions we need to make.
Derek & Leann
Health wise, I have been doing fairly good. Some days are up days, some are down. In general my pain is somewhat better. I tried totally going off the painkillers and couldn't totally do it but I am taking less than I was, sometimes just once a day. My eating has not been as good lately but I am still able to eat some by mouth. We are going back to Mayos in two weeks for routine scans. The next medicine was approved by our insurance so I may start on that then, we'll see what the MRI scans show. The next medicine is something they give by injection once a month, I might do that alone or in combination with pazoponib which I take every night. I have been able to go in to work almost full time. Add that to my time at home thinking and doing email and it exceeds full time.
I heard an account which agrees with my personal experience. Someone who is dealing with medical issues said he decided to open up and share more about what he was dealing with. In the last few weeks he has gotten a good report and the doctors don't have an explanation for the improvement. He credits the prayers of others. I think I have said this before but we have to be reminded of a simple truth. Others like to know specifically what they can pray for. We are rewarded when we have the humility it takes as this is not human nature. It aligns though with what the Bible teaches us. It's not always easy to share but we need too.
Please pray that the pain I do have would continue to abate and for wisdom in a couple weeks to make any decisions we need to make.
Derek & Leann
Friday, March 7, 2014
On way home from mayo
Hello to our family, friends, and even some we don't know,
Derek just finished his next trip to Rochester. This set of appointments was focused on finding out if he qualifies for another class of drugs to fight the cancer. It turns out that Yes, he does. This is a positive thing, but we are also cautious because that doesn't mean that class of drugs will work. We've decided to wait 6 more weeks on the current drug pazoponib. It has decreased the pain he was having in January, which could indicate it is preventing further tumor growth. In the meantime, our health care team will begin the approval process for the class of drugs we will pursue next, when needed.
There have been some really difficult times for us in 2014. In the middle of January, I had a first-time hives outbreak, even calling 911 for help when my face/mouth began to swell. To this day, I do not know the cause. According to my doctor, 50% of hives cases are mysteries. My most likely guess is stress hives, although I didn't feel extreme stress beforehand. Thankfully, that has resolved. Then, mid-February, Derek had a short seizure following an increased dose on his chemo. Another 911 call, but we did not seek evaluation since we were pretty certain of the cause. We lowered his chemo dose again, and that has resolved. In one way, it's good to know he's taking the upper end of what he can tolerate of pazoponib to fight the cancer. Our thanks goes out to Tremont rescue 702 for their response and considerate professionalism!
To recap Derek's handicaps, he has leg weakness on both sides, but more on the right. He uses a walker most of the time, but for greater distance or sometimes ease, he has a powerchair. He has right facial weakness causing some speech difficulty. Also, some swallow problems, so he uses a feeding tube for the bulk of his nutrition. His voice is somewhat better since the voice box injection in December, but nothing like it was before cancer. Some days are better than others with both voice and swallowing. His right ear is sealed off from a surgery, and he wears a hearing aid in the left. When speaking with him, it's best to position yourself to his left or in front facing him. His vision has been good, but we do have to keep the right eye moist since it doesn't close properly. In spite of all of this, he still enjoys going to work, church, being with family, and playing what he can with the kids. He also mentions often how good it is just to be with me, which makes me feel so happy.
Our children are doing well at their new school, and I'm loving the schedule we have established. We have also kept a pretty full social calendar even through the tough times enjoying fellowship and gaining encouragement. Derek took part in judging the robotics competition in our area last weekend. He said it was intense, but he enjoyed the opportunity as well.
We will plan another set of MRIs to check tumor size in mid-April. As always, we covet your prayers for healing, pleasant times together, and Joy in serving our Savior Jesus. He is so wonderful, beautiful, forgiving, and kind. He welcomes anyone to Himself for the highest healing, that our sins
may be blotted out.
Love to all,
Leann (& Derek too)
Derek just finished his next trip to Rochester. This set of appointments was focused on finding out if he qualifies for another class of drugs to fight the cancer. It turns out that Yes, he does. This is a positive thing, but we are also cautious because that doesn't mean that class of drugs will work. We've decided to wait 6 more weeks on the current drug pazoponib. It has decreased the pain he was having in January, which could indicate it is preventing further tumor growth. In the meantime, our health care team will begin the approval process for the class of drugs we will pursue next, when needed.
There have been some really difficult times for us in 2014. In the middle of January, I had a first-time hives outbreak, even calling 911 for help when my face/mouth began to swell. To this day, I do not know the cause. According to my doctor, 50% of hives cases are mysteries. My most likely guess is stress hives, although I didn't feel extreme stress beforehand. Thankfully, that has resolved. Then, mid-February, Derek had a short seizure following an increased dose on his chemo. Another 911 call, but we did not seek evaluation since we were pretty certain of the cause. We lowered his chemo dose again, and that has resolved. In one way, it's good to know he's taking the upper end of what he can tolerate of pazoponib to fight the cancer. Our thanks goes out to Tremont rescue 702 for their response and considerate professionalism!
To recap Derek's handicaps, he has leg weakness on both sides, but more on the right. He uses a walker most of the time, but for greater distance or sometimes ease, he has a powerchair. He has right facial weakness causing some speech difficulty. Also, some swallow problems, so he uses a feeding tube for the bulk of his nutrition. His voice is somewhat better since the voice box injection in December, but nothing like it was before cancer. Some days are better than others with both voice and swallowing. His right ear is sealed off from a surgery, and he wears a hearing aid in the left. When speaking with him, it's best to position yourself to his left or in front facing him. His vision has been good, but we do have to keep the right eye moist since it doesn't close properly. In spite of all of this, he still enjoys going to work, church, being with family, and playing what he can with the kids. He also mentions often how good it is just to be with me, which makes me feel so happy.
Our children are doing well at their new school, and I'm loving the schedule we have established. We have also kept a pretty full social calendar even through the tough times enjoying fellowship and gaining encouragement. Derek took part in judging the robotics competition in our area last weekend. He said it was intense, but he enjoyed the opportunity as well.
We will plan another set of MRIs to check tumor size in mid-April. As always, we covet your prayers for healing, pleasant times together, and Joy in serving our Savior Jesus. He is so wonderful, beautiful, forgiving, and kind. He welcomes anyone to Himself for the highest healing, that our sins
may be blotted out.
Love to all,
Leann (& Derek too)
Tuesday, January 28, 2014
Another mayo visit
We came up to mayos the last couple days since they wanted to followup with my pneumonia and I have had more back pain. I had a complete set of scans yesterday and this morning. We met with the doctors this afternoon. The scans show the upper back tumor has grown a little. This is consistent with the pain i have had. Their basic conclusion is that I can increase the pain med if needed. As for the pazoponib I am on, they were ready to give up on that. We convinced them that I stay on that for the time being since my symptoms only increased during the time I was off it. This was the hospitalization and a few days afterwards. They want me to do an octreoscan to see if i am a candidate for a certain type of drug. this test looks for somatostatin on the surface of the tumor. i wasnt able to get that test this same trip but will do it next time i am up. Dr Buckner is going to look into a couple other drugs in regards to the genetic testing I did last year.
I am not surprised by what the scans showed, but it is discouraging nonetheless. Thanks for your prayers over the past weeks. As for future prayers, just pray that the pazoponib can work and my pain is controlled. Otherwise, I have been feeling good, my brain has been working,eating is going better for the most part. I have lots of reasons to be thankful.
Love,
Derek and Leann
I am not surprised by what the scans showed, but it is discouraging nonetheless. Thanks for your prayers over the past weeks. As for future prayers, just pray that the pazoponib can work and my pain is controlled. Otherwise, I have been feeling good, my brain has been working,eating is going better for the most part. I have lots of reasons to be thankful.
Love,
Derek and Leann
Thursday, January 9, 2014
Back to work
Yesterday, Derek went back to work with vigor. He's excited about stuff again, which is wonderful to see. The Hemoglobin was back up to 10 on Monday, so we restarted the chemo. He was off of the chemo a total of 10 days because of the aspiration pneumonia. While he was in the hospital, he was put on a "stress-dose" of steroids which was 10x the amount he was on at home. I'm questioning whether this was needful, as it is VERY hard coming off. TONS of pain! He has had to go back on the narcotic pain meds which in turn make other (pee/poo) problems. It just doesn't seem like it was worth whatever the benefit they expected him to get from it while at the hospital. Each day is getting a little better though.
Derek doesn't want me to say much about this, but I want to spare any of my friends any difficulty I can. He plans to go through the proper channels to notify OSF of the mistaken advertising, but I will tell you the bottom line: OSF is not "working with" Mayo Clinic, even though their billboard, elevator signs, and on-hold voice messages say so. I have so much trouble getting test results between OSF and Mayo's. It is probably their goal to make this happen seamlessly in the near future, but as the patient/caregiver, we still have to be the ones to get the results ordered, pick them up ourselves, and mail them at the post office to the right person. When the doctors say they will be in contact with our Mayo doctors, it doesn't happen for days. However, I will also emphasize that we greatly appreciate the experience we had at the ER at OSF: Immediate, efficient help for our needs.
On to the kiddos... we have decided to have them attend a private school about 15 minutes drive south of us. Today was their second day, and although they were quite nervous the first day, it went well. I still may have some teaching in the afternoons if there is any catching up to do. They will be on a half-day schedule for awhile to see how the transition goes, so I drop them off at 8:30am and pick up at noon. I have some mixed feelings about it, but mostly feel relieved that I have less responsibility in 2014.
On another note, I want to express my heartfelt thanks for all of you who helped out in the many, many ways we needed you in 2013. Early in the year, we had Derek's lung collapses and many filled in with teaching responsibilities and household chores. Some drove us to appts or sat with us in hospital rooms. In July, we had the lung surgery. We appreciated the many visitors and babysitters. I even had a few that stayed nights at our house from time to time over the year. Never knowing what our needs may be, it's often difficult to communicate them, especially in advance. Our church has been a wonderful and uplifting source of comfort, and finally and most of all, our Jesus and our Father in Heaven who has sustained us and been the lifter up of our heads. Praise be to Him! We keep trusting his almighty Presence for each new day and are thankful for His mercy and grace to help us through the suffering we have been called to walk. Many times, it is joy just turned sideways a little. I've thoroughly enjoyed many long hours with Derek, at his bedside or sitting in front of the fire, serving him while he encourages me. It's beautiful. We love you and pray for the many others who are grieving, broken-hearted, missing loved ones, or enduring hardships. There are a lot of troubles worse than living with cancer.
Leann & Derek
Derek doesn't want me to say much about this, but I want to spare any of my friends any difficulty I can. He plans to go through the proper channels to notify OSF of the mistaken advertising, but I will tell you the bottom line: OSF is not "working with" Mayo Clinic, even though their billboard, elevator signs, and on-hold voice messages say so. I have so much trouble getting test results between OSF and Mayo's. It is probably their goal to make this happen seamlessly in the near future, but as the patient/caregiver, we still have to be the ones to get the results ordered, pick them up ourselves, and mail them at the post office to the right person. When the doctors say they will be in contact with our Mayo doctors, it doesn't happen for days. However, I will also emphasize that we greatly appreciate the experience we had at the ER at OSF: Immediate, efficient help for our needs.
On to the kiddos... we have decided to have them attend a private school about 15 minutes drive south of us. Today was their second day, and although they were quite nervous the first day, it went well. I still may have some teaching in the afternoons if there is any catching up to do. They will be on a half-day schedule for awhile to see how the transition goes, so I drop them off at 8:30am and pick up at noon. I have some mixed feelings about it, but mostly feel relieved that I have less responsibility in 2014.
On another note, I want to express my heartfelt thanks for all of you who helped out in the many, many ways we needed you in 2013. Early in the year, we had Derek's lung collapses and many filled in with teaching responsibilities and household chores. Some drove us to appts or sat with us in hospital rooms. In July, we had the lung surgery. We appreciated the many visitors and babysitters. I even had a few that stayed nights at our house from time to time over the year. Never knowing what our needs may be, it's often difficult to communicate them, especially in advance. Our church has been a wonderful and uplifting source of comfort, and finally and most of all, our Jesus and our Father in Heaven who has sustained us and been the lifter up of our heads. Praise be to Him! We keep trusting his almighty Presence for each new day and are thankful for His mercy and grace to help us through the suffering we have been called to walk. Many times, it is joy just turned sideways a little. I've thoroughly enjoyed many long hours with Derek, at his bedside or sitting in front of the fire, serving him while he encourages me. It's beautiful. We love you and pray for the many others who are grieving, broken-hearted, missing loved ones, or enduring hardships. There are a lot of troubles worse than living with cancer.
Leann & Derek
Friday, January 3, 2014
Home Update
We finally got out of the hospital on New Years Eve. I think it would have been easier to break out of jail. (I'm exaggerating a little but not too much) Sorry for not updating then but I never got to it. New Years Day was spent at M&D Sauders having our Christmas. The last two days I have slept in and then done some work via laptop from home. Recovery has not been as fast as I'd like. I am less winded but still feel some efffects. I have been waking up with headaches so it is taking me a bit to get going. No big plans around here for the weekend.
Love,
Derek & Leann
Love,
Derek & Leann
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