Happy Halloween!
Today was a good day. Denny slept peacefully through the night until lunchtime. He ate well, went back to sleep, and then was up from about 5:00 until nearly 9:00.
He watched football with Dave and Chip, played with Connor and Grant, and then we watched the end of "Footloose." I read him your cards, e-mails, and blog responses
which still seem to take him by surprise when so many credit their successes to lessons learned from him, either as a teacher, coach, or the outstanding role model he has been throughout his life. He always smiles and shakes his head and sometimes says, "I was just doing my job."
Our day began with Xavier's very own Merry Maids (that would be Kathy Bates, Sarah Simon, and Beth Rippl) showing up to clean our house! Of course, Sarah brought enough food for our family for the weekend, so that was a wonderful surprise. (There is one lucky guy out there who just hasn't met her yet! She is something else!!) Other neighbors and friends stopped in, too, so the day went by quickly. Now it's time for some sleep.
I hope you are all enjoying the weekend. Hug someone you love extra tight!!
Love,
Carla
Saturday, October 31, 2009
Thursday, October 29, 2009
October 29
Dear Friends,
We are home. The last two days have been a whirlwind of activity, but with Denny sleeping in his "new" room, I finally have some time to write.
Yesterday our day began with a visit with Steve Howard, who met with Drs. Mehta and Robbins (both nationally known for their expertise with brain cancer and treatment for it) on Tuesday. Denny's cancer is very unique. It's location, size, and response to treatment have all been very unusual. Steve told us that patients with similar tumors rarely survive six months even with treatment. That was news to us--we never wanted to know the numbers in relation to "time." I'm thankful we never knew that fact because it allowed us to live with lots of hope these past sixteen months.
The general weakness to Den's entire body and specific numbness to his right side is
most likely from the combination of radiation, chemo, and steroids. Steve explained in lay terms just how the thalamus works and how the treatments affected the cancer and the areas around it. I'm thankful, too, that he didn't share that information earlier. That's why he is so special to us--as is Dr. Meena. Both seemed to know just what we needed to know at the time.
We came home via Cabulance and were greeted by members of the hospice staff. Denny's nurse is a tall, soft-spoken young man who already seems to be a great match for our family. He spent just the right amount of time as we got Den settled in.
Then last night Dr. Richter came over to check on everything and go over all of the medications. He and Dr. Meena will work together to make sure Denny gets everything he needs right here at home.
Today we met the aide that will be here to help. He endeared himself to me as I watched him take care of Denny this afternoon. I believe that God had a hand in sending these two angels to help me take care of Denny, because I felt immediate trust and Denny feels very comfortable with both of them.
So, here we are, and we will take each day as it comes just like we have since June 11, 2008, when we first learned about this dreaded disease. With God and all of you with us, those days will be much easier. Please continue to communicate if you have time--I read every single note, e-mail, blog comment, and card to Denny. It always amazes me how many details he can remember about former students from Xavier, St. Mary's, St. John's, and even those he taught the one year he spent in Denmark. It has been fun for him to hear from so many of you.
"Yesterday is but a dream,
And tomorrow is only a vision.
But today, well-lived,
Makes every yesterday a dream of happiness,
And every tomorrow a vision of hope.
Look well, therefore, to this day."
---Sanskrit proverb
Love and many thanks to all of you,
Carla
We are home. The last two days have been a whirlwind of activity, but with Denny sleeping in his "new" room, I finally have some time to write.
Yesterday our day began with a visit with Steve Howard, who met with Drs. Mehta and Robbins (both nationally known for their expertise with brain cancer and treatment for it) on Tuesday. Denny's cancer is very unique. It's location, size, and response to treatment have all been very unusual. Steve told us that patients with similar tumors rarely survive six months even with treatment. That was news to us--we never wanted to know the numbers in relation to "time." I'm thankful we never knew that fact because it allowed us to live with lots of hope these past sixteen months.
The general weakness to Den's entire body and specific numbness to his right side is
most likely from the combination of radiation, chemo, and steroids. Steve explained in lay terms just how the thalamus works and how the treatments affected the cancer and the areas around it. I'm thankful, too, that he didn't share that information earlier. That's why he is so special to us--as is Dr. Meena. Both seemed to know just what we needed to know at the time.
We came home via Cabulance and were greeted by members of the hospice staff. Denny's nurse is a tall, soft-spoken young man who already seems to be a great match for our family. He spent just the right amount of time as we got Den settled in.
Then last night Dr. Richter came over to check on everything and go over all of the medications. He and Dr. Meena will work together to make sure Denny gets everything he needs right here at home.
Today we met the aide that will be here to help. He endeared himself to me as I watched him take care of Denny this afternoon. I believe that God had a hand in sending these two angels to help me take care of Denny, because I felt immediate trust and Denny feels very comfortable with both of them.
So, here we are, and we will take each day as it comes just like we have since June 11, 2008, when we first learned about this dreaded disease. With God and all of you with us, those days will be much easier. Please continue to communicate if you have time--I read every single note, e-mail, blog comment, and card to Denny. It always amazes me how many details he can remember about former students from Xavier, St. Mary's, St. John's, and even those he taught the one year he spent in Denmark. It has been fun for him to hear from so many of you.
"Yesterday is but a dream,
And tomorrow is only a vision.
But today, well-lived,
Makes every yesterday a dream of happiness,
And every tomorrow a vision of hope.
Look well, therefore, to this day."
---Sanskrit proverb
Love and many thanks to all of you,
Carla
Monday, October 26, 2009
October 26 (P.M.)
Hi again,
Today was busy--it seems like I was just sitting here writing the previous blog. I went to the hospital right after that entry and just returned. Den had a more comfortable day and even participated in a limited physical therapy session. We never did see the neurologist who ordered the MRI, but another doctor told us that there is a small area that is new since the September scan. I am anticipating a far more detailed explanation from Steve Howard when we see him Wednesday morning. We had this appointment with him long before any of the recent hospitalizations (he just happens to be coming to Mercy that day.) I know that Denny is looking forward to seeing Steve.
After that appointment, we will be coming home. The hospice nurse and aide will meet us here so they can get Denny into the house in a wheelchair. Then that night Dr. Richter will stop over just to go through all of the medications, etc., with me. Today they showed me how to fill the insulin needles that he'll be needing on a sliding scale, so that's the only really new thing. The plan is to decrease the steroids slowly (again) so I'm hoping at some point Denny won't need the insulin at all. Everything, literally, depends on the steroids.
So, we will take each day as it comes. I know that the hospice care is a Godsend and
I know I will be forever grateful for their help. Needing help, asking for help, accepting help--it's a hard place to be. But then I think of what Denny is going through and I realize that without the help of others his life will lack the joy of friendship that he so deeply deserves and really needs at this point of this challenge. So please know that your messages, visits, etc., will always be greatly appreciated. Once he's settled in to his new room and the routine of the hospice people, we'll have a better idea of what we need to make this situation the best it can be for Denny. Thank you, everyone, for your kind notes, concern, encouragement, and prayers.
Love,
Carla
Today was busy--it seems like I was just sitting here writing the previous blog. I went to the hospital right after that entry and just returned. Den had a more comfortable day and even participated in a limited physical therapy session. We never did see the neurologist who ordered the MRI, but another doctor told us that there is a small area that is new since the September scan. I am anticipating a far more detailed explanation from Steve Howard when we see him Wednesday morning. We had this appointment with him long before any of the recent hospitalizations (he just happens to be coming to Mercy that day.) I know that Denny is looking forward to seeing Steve.
After that appointment, we will be coming home. The hospice nurse and aide will meet us here so they can get Denny into the house in a wheelchair. Then that night Dr. Richter will stop over just to go through all of the medications, etc., with me. Today they showed me how to fill the insulin needles that he'll be needing on a sliding scale, so that's the only really new thing. The plan is to decrease the steroids slowly (again) so I'm hoping at some point Denny won't need the insulin at all. Everything, literally, depends on the steroids.
So, we will take each day as it comes. I know that the hospice care is a Godsend and
I know I will be forever grateful for their help. Needing help, asking for help, accepting help--it's a hard place to be. But then I think of what Denny is going through and I realize that without the help of others his life will lack the joy of friendship that he so deeply deserves and really needs at this point of this challenge. So please know that your messages, visits, etc., will always be greatly appreciated. Once he's settled in to his new room and the routine of the hospice people, we'll have a better idea of what we need to make this situation the best it can be for Denny. Thank you, everyone, for your kind notes, concern, encouragement, and prayers.
Love,
Carla
October 26
Hi,
I debated whether to write today but all of you have been with us for so long and today I really need the comfort of knowing you are still there. It's been a very emotional few days and I know today will be another. Denny has vacillated between the depths of despair and periods of time when he still sees that there could be hope. Today we will learn the results of Friday's MRI, so we will know more about what is causing his incredible weakness. He can no longer walk and turning himself in bed is exhausting for him. Also today, we are meeting with the social worker from Heartland Hospice to finalize plans with them. The kids, Pat and Patti Voss, and I worked this weekend to convert the dining room into a bedroom for Den, so I am as ready as I can be to bring him home.
Last night Denny asked for the kids and their families to come to the hospital. We were all there for a couple of hours and although he didn't say much, he smiled whenever he heard the voices of the little ones, and his voice was clear when he expressed his love for everyone. Everyone felt a little better when he asked for a bite of a cookie. I had planned to stay through the night if he wanted me there, but soon after the others left he assured me that the wave of fear and panic had been calmed and he just wanted to sleep, knowing we were all safe at home.
I will update this when I know more later on today.
Love,
Carla
I debated whether to write today but all of you have been with us for so long and today I really need the comfort of knowing you are still there. It's been a very emotional few days and I know today will be another. Denny has vacillated between the depths of despair and periods of time when he still sees that there could be hope. Today we will learn the results of Friday's MRI, so we will know more about what is causing his incredible weakness. He can no longer walk and turning himself in bed is exhausting for him. Also today, we are meeting with the social worker from Heartland Hospice to finalize plans with them. The kids, Pat and Patti Voss, and I worked this weekend to convert the dining room into a bedroom for Den, so I am as ready as I can be to bring him home.
Last night Denny asked for the kids and their families to come to the hospital. We were all there for a couple of hours and although he didn't say much, he smiled whenever he heard the voices of the little ones, and his voice was clear when he expressed his love for everyone. Everyone felt a little better when he asked for a bite of a cookie. I had planned to stay through the night if he wanted me there, but soon after the others left he assured me that the wave of fear and panic had been calmed and he just wanted to sleep, knowing we were all safe at home.
I will update this when I know more later on today.
Love,
Carla
Wednesday, October 21, 2009
October 21
Dear Friends,
It's been a chaotic week of physical and emotional ups and downs for all of us. I didn't want to write until there was a real plan and I didn't know what it would be until this afternoon.
Denny's stay at Mercy for physical/occupational rehab has not gone nearly as well as anyone expected. After a great start, his strength diminished significantly so he isn't able to meet the criteria to continue in the rehab unit. Tomorrow he will be transferred to the sub-acute unit at Mercy for about five days and then he will be discharged to come home. We had originally been told that he would be going to a nursing home for more therapy, but the insurance has deemed him ineligible for skilled nursing care. So, he will come home and I believe we will be eligible for hospice care. I'll be learning more about that over the next couple of days.
Because of his limitations, I am converting the dining room into a bedroom for him.
The kids will help me with that over the weekend so we are ready. I still don't know how we are going to get him into the house but where there's a will there's a way, I guess.
I suppose I should have been more prepared for this, but he was doing so well....
but we will continue to take each day as it comes and with God's help we'll do the best we can. As much as he'd like to, I know Den won't be responding to all of the e-mails he received, but please know how much of a morale booster those notes are for him.
I'll keep you posted. Thanks for your continued support as our journey continues.
Love,
Carla
It's been a chaotic week of physical and emotional ups and downs for all of us. I didn't want to write until there was a real plan and I didn't know what it would be until this afternoon.
Denny's stay at Mercy for physical/occupational rehab has not gone nearly as well as anyone expected. After a great start, his strength diminished significantly so he isn't able to meet the criteria to continue in the rehab unit. Tomorrow he will be transferred to the sub-acute unit at Mercy for about five days and then he will be discharged to come home. We had originally been told that he would be going to a nursing home for more therapy, but the insurance has deemed him ineligible for skilled nursing care. So, he will come home and I believe we will be eligible for hospice care. I'll be learning more about that over the next couple of days.
Because of his limitations, I am converting the dining room into a bedroom for him.
The kids will help me with that over the weekend so we are ready. I still don't know how we are going to get him into the house but where there's a will there's a way, I guess.
I suppose I should have been more prepared for this, but he was doing so well....
but we will continue to take each day as it comes and with God's help we'll do the best we can. As much as he'd like to, I know Den won't be responding to all of the e-mails he received, but please know how much of a morale booster those notes are for him.
I'll keep you posted. Thanks for your continued support as our journey continues.
Love,
Carla
Tuesday, October 13, 2009
October 13
Hi to everyone,
This will be brief as not much has changed. Denny continues his rehab at Mercy, where he will be for at least another week. He has good days and not-so-good days. He is still taking 16 mg. of steroids, which is causing high blood sugar numbers, which, in turn, causes blurred vision and other annoying side effects. Today was a pretty good day, so he accomplished a lot in all four therapy sessions. Now we just wait to see what tomorrow brings.
Thanks for your continued support. It keeps us going.
Love,
Carla
This will be brief as not much has changed. Denny continues his rehab at Mercy, where he will be for at least another week. He has good days and not-so-good days. He is still taking 16 mg. of steroids, which is causing high blood sugar numbers, which, in turn, causes blurred vision and other annoying side effects. Today was a pretty good day, so he accomplished a lot in all four therapy sessions. Now we just wait to see what tomorrow brings.
Thanks for your continued support. It keeps us going.
Love,
Carla
Wednesday, October 7, 2009
October 7
Hi,
With all of the blood tests, X-rays, CT scans, and MRI's in, it all comes down to the steroids. The last test Denny had was last night when an eye doctor visited and gave him a fairly complete exam (because of the blurred vision he's recently developed.) His vision is 20/20, the eye pressure is fine, and things should go back to normal once the steroids are lowered. The issue with his blood sugar should also take care of itself--but until then he'll get insulin as he needs it.
Deemed stable enough for transfer, I got a call this morning that he was to be taken back to Mercy Medical in Oshkosh as soon as I could get him there. So, that is where he is, ready for some intense rehab so he can get strong enough to come home.
Thanks to all of you who have sent e-mails. Those replies will come from him as soon as he gets home. In the meantime, I read your messages to him and he is so moved by your words of encouragement and/or memories of your time with him. He is still the wonderful man you remember.
Until next time, grateful thanks for keeping Denny in your prayers. We are so lucky to have so many wonderful friends.
Love,
Carla
With all of the blood tests, X-rays, CT scans, and MRI's in, it all comes down to the steroids. The last test Denny had was last night when an eye doctor visited and gave him a fairly complete exam (because of the blurred vision he's recently developed.) His vision is 20/20, the eye pressure is fine, and things should go back to normal once the steroids are lowered. The issue with his blood sugar should also take care of itself--but until then he'll get insulin as he needs it.
Deemed stable enough for transfer, I got a call this morning that he was to be taken back to Mercy Medical in Oshkosh as soon as I could get him there. So, that is where he is, ready for some intense rehab so he can get strong enough to come home.
Thanks to all of you who have sent e-mails. Those replies will come from him as soon as he gets home. In the meantime, I read your messages to him and he is so moved by your words of encouragement and/or memories of your time with him. He is still the wonderful man you remember.
Until next time, grateful thanks for keeping Denny in your prayers. We are so lucky to have so many wonderful friends.
Love,
Carla
Monday, October 5, 2009
October 5
Hi,
Just about a year ago, Dr. Mortara, Denny's first oncologist, told us that steroids are the most evil of all drugs. Now I know why. They are the only thing that helps any swelling in the brain, so a person with a tumor pretty much has to take them in order to have mental alertness and a certain amount of physical strength. At the same time, those steroids are eating away at all of the large muscles in that same body, weakening it. They also cause the skin to become paper thin, the face, stomach, and limbs to swell, and bruises to appear all over the body. Put those all together and you get big purple bruises with skin so fragile that it tears at the softest touch. May I also add that prolonged use of steroids can cause high blood sugar levels, which must be treated with insulin.
Denny is now experiencing all of the above. He looks like he's been beaten with chains. Dr. Meena and Dr. Richter are working together to manage all of his health issues as the brain cancer is just one component. Tomorrow there will be a consultation with a urologist, but because of Den's general health, it's somewhat questionable as to what the doctor will be able to do to minimize the number of times Den has to get up during the night. Dr. Richter has ordered more blood tests to assess just how the platelets are working and is having Den start a high protein diet. I think Denny's days of being the original cookie monster are over.
It's possible that once he is stabilized he will go back to Mercy Medical in Oshkosh for either rehab or to their sub-acute unit just in hopes of getting stronger. He has to be assessed and recommended for admission there, just like last time, so we won't know anything until those doctors see him. There's also the possibility that he will be sent home and we will have to get health care for him here.
I hope I have some positive news when I write the next time. The "new normal" we have tried to adjust to just continues to redefine itself.
Love,
Carla
Just about a year ago, Dr. Mortara, Denny's first oncologist, told us that steroids are the most evil of all drugs. Now I know why. They are the only thing that helps any swelling in the brain, so a person with a tumor pretty much has to take them in order to have mental alertness and a certain amount of physical strength. At the same time, those steroids are eating away at all of the large muscles in that same body, weakening it. They also cause the skin to become paper thin, the face, stomach, and limbs to swell, and bruises to appear all over the body. Put those all together and you get big purple bruises with skin so fragile that it tears at the softest touch. May I also add that prolonged use of steroids can cause high blood sugar levels, which must be treated with insulin.
Denny is now experiencing all of the above. He looks like he's been beaten with chains. Dr. Meena and Dr. Richter are working together to manage all of his health issues as the brain cancer is just one component. Tomorrow there will be a consultation with a urologist, but because of Den's general health, it's somewhat questionable as to what the doctor will be able to do to minimize the number of times Den has to get up during the night. Dr. Richter has ordered more blood tests to assess just how the platelets are working and is having Den start a high protein diet. I think Denny's days of being the original cookie monster are over.
It's possible that once he is stabilized he will go back to Mercy Medical in Oshkosh for either rehab or to their sub-acute unit just in hopes of getting stronger. He has to be assessed and recommended for admission there, just like last time, so we won't know anything until those doctors see him. There's also the possibility that he will be sent home and we will have to get health care for him here.
I hope I have some positive news when I write the next time. The "new normal" we have tried to adjust to just continues to redefine itself.
Love,
Carla
Saturday, October 3, 2009
October 3
Happy Saturday!
This is just to let you know that Denny is still at St. E's and will most likely be discharged Monday. As suspected, his extreme sensitivity to the steroids caused his near collapse on Thursday, so now it's a guessing game again. We took quite a long walk throughout the hospital halls last night and today he told me that his right arm and hand seem somewhat better.
My guess that we might have to see a cardiologist proved to be wrong. I had a lengthy conversation with the pulmonary doctor yesterday and he said that given all of the clots that packed Den's lungs last November, this lungs are weak but with rehab he will gain some strength. The doctor has also ordered a CPAP machine to help Den get a more restful sleep at night which, in turn, may help with his daytime fatigue. There is a tiny bit of pulmonary hypertension, but nothing treatable, and his heart is basically healthy except for the irregular beat. Most people with that condition are given a blood thinner, but since that causes bleeding in Denny's brain, he cannot take that. Basically, he is going to have to fill his days with lots of different types of therapies to try to build up his strength. He's been relatively sedentary for a year, so this will take some discipline. I think it will fall into place if we can just get the steroid amount right and keep him hydrated.
So, he's been thoroughly checked and rechecked and his MRIs have been reviewed by all of the specialists. Dr. Mahindra (the lung specialist) said that tumor, whether it's active cancer or has turned cystic, is still there and Den's body recognizes it as foreign so it keeps fighting against it. That, in turn, causes the edema around the mass, which requires the steroids to calm it down. It's a vicious cycle, that's for sure.
Denny really does love hearing from family and friends, so please don't hesitate to call, e-mail (doudenhoven@new.rr.com) or leave a message on this blog site. Part of his occupational therapy is to use the keyboard, so having someone to write to would sure beat typing random word and sentences!
I hope you are enjoying the weekend. Fall is really here!
Love,
Carla
This is just to let you know that Denny is still at St. E's and will most likely be discharged Monday. As suspected, his extreme sensitivity to the steroids caused his near collapse on Thursday, so now it's a guessing game again. We took quite a long walk throughout the hospital halls last night and today he told me that his right arm and hand seem somewhat better.
My guess that we might have to see a cardiologist proved to be wrong. I had a lengthy conversation with the pulmonary doctor yesterday and he said that given all of the clots that packed Den's lungs last November, this lungs are weak but with rehab he will gain some strength. The doctor has also ordered a CPAP machine to help Den get a more restful sleep at night which, in turn, may help with his daytime fatigue. There is a tiny bit of pulmonary hypertension, but nothing treatable, and his heart is basically healthy except for the irregular beat. Most people with that condition are given a blood thinner, but since that causes bleeding in Denny's brain, he cannot take that. Basically, he is going to have to fill his days with lots of different types of therapies to try to build up his strength. He's been relatively sedentary for a year, so this will take some discipline. I think it will fall into place if we can just get the steroid amount right and keep him hydrated.
So, he's been thoroughly checked and rechecked and his MRIs have been reviewed by all of the specialists. Dr. Mahindra (the lung specialist) said that tumor, whether it's active cancer or has turned cystic, is still there and Den's body recognizes it as foreign so it keeps fighting against it. That, in turn, causes the edema around the mass, which requires the steroids to calm it down. It's a vicious cycle, that's for sure.
Denny really does love hearing from family and friends, so please don't hesitate to call, e-mail (doudenhoven@new.rr.com) or leave a message on this blog site. Part of his occupational therapy is to use the keyboard, so having someone to write to would sure beat typing random word and sentences!
I hope you are enjoying the weekend. Fall is really here!
Love,
Carla
Thursday, October 1, 2009
October 1
Hi,
I didn't think I'd be writing again so soon, but Den is back in the hospital after just a few days at home. I'm sure it has to have something to do with the steroid
dosage going from possibly too low to a booster amount and then the attempt to come back down too quickly. A CT was ordered to check out his stomach and pelvis and we'll get those results tomorrow. He will have been scanned, MRIed, and ultrasounded from top to bottom and every blood test has been run. If there is any good news, it's that he doesn't have any pain at all. (Actually, he hasn't taken so much as a Tylenol since he left Mercy Medical last June!) I'm sure that we'll be seeing a cardiologist to cover all of the bases, but that appointment has not been made yet.
So, that's the update. I hope he will be home soon and there will be some plan of attack to this debilitating weakness. There are no words that can adequately describe how sad I am for him. Please pray.
Love,
Carla
I didn't think I'd be writing again so soon, but Den is back in the hospital after just a few days at home. I'm sure it has to have something to do with the steroid
dosage going from possibly too low to a booster amount and then the attempt to come back down too quickly. A CT was ordered to check out his stomach and pelvis and we'll get those results tomorrow. He will have been scanned, MRIed, and ultrasounded from top to bottom and every blood test has been run. If there is any good news, it's that he doesn't have any pain at all. (Actually, he hasn't taken so much as a Tylenol since he left Mercy Medical last June!) I'm sure that we'll be seeing a cardiologist to cover all of the bases, but that appointment has not been made yet.
So, that's the update. I hope he will be home soon and there will be some plan of attack to this debilitating weakness. There are no words that can adequately describe how sad I am for him. Please pray.
Love,
Carla
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