Our God is faithful in all things.
Kevin
Tuesday, January 31, 2012
FInally at Home Jan 30, 2012
Our God is faithful in all things.
Kevin
Saturday, January 28, 2012
Kevin's Update 28 Jan 2012
Today is the first day we did not have to see the Doc or go to a clinic since the 3rd of January. On Friday I was told that my counts are good enough that I will have one more visit to the Bone Marrow transplant clinic on Monday. If nothing has changed for the worse over the weekend then Kathy and I will be able to leave the Hope Lodge on Monday evening and return to the house.
I will have to have a weekly appointment with my regular oncologist for some time to come. In March I will return to the BMT Clinic for evaluation for a clinical trial.
Over the last couple of weeks we have received a number of cards. Here are some pictures of the cards. The bright colored cards are from the T&T Kids in AWANA at our church and the kindergarten Sunday school class.
Have a great day!!
Kevin
I will have to have a weekly appointment with my regular oncologist for some time to come. In March I will return to the BMT Clinic for evaluation for a clinical trial.
Over the last couple of weeks we have received a number of cards. Here are some pictures of the cards. The bright colored cards are from the T&T Kids in AWANA at our church and the kindergarten Sunday school class.
Kevin
Tuesday, January 24, 2012
24 January 2012
I am still in the hospital. Maybe only for one more day. My white blood count continues to go up although it is still far from normal. Last night I only had one fever spike which was limited in duration and did not get above 101. That is a significant change from the last four days.
I had a new PICC line emplaced yesterday so they can continue treatment with out using an IV. That was critical for me to be released from the hospital and continue in an out-patient mode.
I feel better generally but there are things that are bothering me now that were not before this short hospital stay. One of those things is the amount of pain I am having while standing up. It feels like my hips are going to implode. Hopefully that will decrease as I begin to move around more.
We will post more later.
Kevin
I had a new PICC line emplaced yesterday so they can continue treatment with out using an IV. That was critical for me to be released from the hospital and continue in an out-patient mode.
I feel better generally but there are things that are bothering me now that were not before this short hospital stay. One of those things is the amount of pain I am having while standing up. It feels like my hips are going to implode. Hopefully that will decrease as I begin to move around more.
We will post more later.
Kevin
Monday, January 23, 2012
Monday, January 23
Yesterday started out on a positive note. But things turned bad in the late afternoon. I developed a fever that went above 103. My doc changed some meds, put me on ice packs and a cooling sheet, and slowly my fever went down. Then during the night I started have some extreme stomach issues. It was a long night and very concerning. This morning I feel much better and I am eagerly awaiting my last lab results so I can see if my white blood count is still moving up. Hopefully some of the other counts will be improving as well.
Sunday, January 22, 2012
Sunday AM the 22nd
Kevin is still battling a fever. Yesterday he up around 103 a lot and that was pretty scary and uncomfortable for him. He also started having "gut issues". His whole body rash has gotten worse too.
Kevin was able to sleep a bit last night. Hard to do between the nurse visits and him having to get to the bathroom. :( But he slept in between those interruptions.
Good news about the fever is that once over night he got down to 99.7. But he got up to 101.6 again and that is the magic number for them to take another blood culture. Did that about an hour ago. But at least over night he wasn't up to 103.
He is now in isolation because of the stomach issue. So everyone that comes in has to be fully gowned etc.
We just realized that his hair is starting to come out this morning. I was starting to wonder if that would be happening or not.
I'll let you know any changes as they happen. But this morning he looks better than he has in several days. He is talking and looking alert!
Blessings,
Kathy
Kevin was able to sleep a bit last night. Hard to do between the nurse visits and him having to get to the bathroom. :( But he slept in between those interruptions.
Good news about the fever is that once over night he got down to 99.7. But he got up to 101.6 again and that is the magic number for them to take another blood culture. Did that about an hour ago. But at least over night he wasn't up to 103.
He is now in isolation because of the stomach issue. So everyone that comes in has to be fully gowned etc.
We just realized that his hair is starting to come out this morning. I was starting to wonder if that would be happening or not.
I'll let you know any changes as they happen. But this morning he looks better than he has in several days. He is talking and looking alert!
Blessings,
Kathy
Saturday, January 21, 2012
Saturday the 21st
I don't know where to start. I guess I will just give you the highlights (or should I say the low lights)
Kevin started a fever Thursday night/Friday morning. To the hospital for blood cultures. They drew them from all 3 of his PICC lines and from his other arm. They wanted to know if there was an infection in his blood or in one of those lines.
Then to the BMT clinic for the rest of the morning. We went back to Hope Lodge and around 7pm I noticed that he had a rash. Called the doc on call. He told me to give him Benedryl so I had to find some one at HL to babysit him (he can't ever be left alone) so I could run to the store.
He ran a fever in the middle of the day. Then again around midnight. So I set my alarm for every 45 minutes to check on him. Called the doc on call at 6:30 and he said to get him to the clinic. They gave him a new antibiotic because the one that they gave him Friday morning was causing the rash. They also told us that one of the PICC lines was positive for strep! Fever up to 103 After they gave him Tylenol!
I brought him to the hospital around 11. He was put sraight into a room. They took the PICC line out that has the strep infection and put in 2 IVs. Now they are giving fluids and a new antibiotic. Right now he is down getting a ct scan of his lungs.
So if all goes well and his body does what they want he will be in the hospital till Tuesday or Wednesday.
He still has no white blood cells so he has NO immunity at this point. Within the next day or 2 his body should kick in and start making those cells again. But I don't know what this set back does to that.
Thanks for caring about us. The love that has been showered on us is amazing!
Blessings,
Kathy
Kevin started a fever Thursday night/Friday morning. To the hospital for blood cultures. They drew them from all 3 of his PICC lines and from his other arm. They wanted to know if there was an infection in his blood or in one of those lines.
Then to the BMT clinic for the rest of the morning. We went back to Hope Lodge and around 7pm I noticed that he had a rash. Called the doc on call. He told me to give him Benedryl so I had to find some one at HL to babysit him (he can't ever be left alone) so I could run to the store.
He ran a fever in the middle of the day. Then again around midnight. So I set my alarm for every 45 minutes to check on him. Called the doc on call at 6:30 and he said to get him to the clinic. They gave him a new antibiotic because the one that they gave him Friday morning was causing the rash. They also told us that one of the PICC lines was positive for strep! Fever up to 103 After they gave him Tylenol!
I brought him to the hospital around 11. He was put sraight into a room. They took the PICC line out that has the strep infection and put in 2 IVs. Now they are giving fluids and a new antibiotic. Right now he is down getting a ct scan of his lungs.
So if all goes well and his body does what they want he will be in the hospital till Tuesday or Wednesday.
He still has no white blood cells so he has NO immunity at this point. Within the next day or 2 his body should kick in and start making those cells again. But I don't know what this set back does to that.
Thanks for caring about us. The love that has been showered on us is amazing!
Blessings,
Kathy
Friday, January 20, 2012
Fever again
Kevin's fever was gone at the hospital. But they treat any fever as if it is an infection. The cultures won't be back for 3-4 days. So we won't know if this is an infection or just his body's response to all the stress it is under.
We left the hospital after 7 and went straight to the BMT clinic. They did lab work. Found that his platelets were down to 6. 10 or lower is when they give platelets so they gave him a bag. They also gave fluids because he is unsteady on his feet. A bit of potassium too.
He is pretty weak and we had to use a wheelchair today to get him around.
I'm writing this at 3:30 and his fever is back up to 101.
The good news is that the nausea is gone, or at least for now. So he has eaten a little bit today. And he is drinking pretty well.
Please pray that: the fevers go and stay away
Wisdom and calmness for me
That his blood work looks better tomorrow
Blessings,
Kathy
We left the hospital after 7 and went straight to the BMT clinic. They did lab work. Found that his platelets were down to 6. 10 or lower is when they give platelets so they gave him a bag. They also gave fluids because he is unsteady on his feet. A bit of potassium too.
He is pretty weak and we had to use a wheelchair today to get him around.
I'm writing this at 3:30 and his fever is back up to 101.
The good news is that the nausea is gone, or at least for now. So he has eaten a little bit today. And he is drinking pretty well.
Please pray that: the fevers go and stay away
Wisdom and calmness for me
That his blood work looks better tomorrow
Blessings,
Kathy
Trip to the hospital
Just when I was getting used to our "groundhog day experience" of the same old same old...... Kev woke me at 3 with a fever. NOT a good thing for him to have.
The rule with transplant patients is you have to call in immediately if you hit 100.5 - even if you only stay there for 10 minutes, still gotta call. Well he hit 101.1 so I called. They put me straight through to the transplant doc on call and he said they would be waiting for Kev in the cancer ward at KU Med. So here we are. They took blood from each of his 3 PICC lines and one from his other arm. They want to make sure that he doesn't have the infection in one of the PICC lines or out in the blood stream.
Next he will get IV antibiotics. We will hang out here in the room until 7 am and then we will head over to the BMT clinic. The hospital is NOT a place we want him right now. He is at the lowest point right now so he has no immunity. There are way too many bugs in a hospital that he can catch so we want out of here as soon as possible.
I guess this put a little break in our routine. Not a good one!
Keep on praying!
Kathy
The rule with transplant patients is you have to call in immediately if you hit 100.5 - even if you only stay there for 10 minutes, still gotta call. Well he hit 101.1 so I called. They put me straight through to the transplant doc on call and he said they would be waiting for Kev in the cancer ward at KU Med. So here we are. They took blood from each of his 3 PICC lines and one from his other arm. They want to make sure that he doesn't have the infection in one of the PICC lines or out in the blood stream.
Next he will get IV antibiotics. We will hang out here in the room until 7 am and then we will head over to the BMT clinic. The hospital is NOT a place we want him right now. He is at the lowest point right now so he has no immunity. There are way too many bugs in a hospital that he can catch so we want out of here as soon as possible.
I guess this put a little break in our routine. Not a good one!
Keep on praying!
Kathy
Tuesday, January 17, 2012
A day in our lives..........
I have gotten various comments that have led me to believe that some folks are wondering what happens in a normal "Kevin Day" right now. So I thought I would give you an idea.......
7 - up and get ready for the day, he is moving pretty slowly right now - he is tired, in pain and feeling nauseous a bit
8:30 - leave for the clinic. They take vitals and draw blood every day. We wait for the lab results for at least an hour. Then depending on the results they may give him blood products or other various items. So we are in the clinic from 9 till 10:30-12:30
We leave there and on most days we stop at the grocery store that is near the clinic. I'm having a hard time cooking for him. He has to eat 123g of protein a day. That is a LOT of protein, especially since just about nothing sounds good to him. So I find out each day if there is anything that sounds good to him right then. I leave him in the van and run in and buy what sounds good. He is not able to eat anything that has been handled by anyone else or out in the open. So no deli foods, no restaurant food etc. That will be the rule for about 6 months or so.
Then back to the Hope Lodge. It has been a great thing for us. He has to be within 30 minutes of the hospital at all times. We live further than that from KU Med so we are staying at Hope Lodge. It is similar to a Ronald McDonald House, but it is run by the American Cancer Society. We have room there, just like a hotel room. There is a kitchen on the lower level that I can cook for us.
Kevin is not allowed visitors or to even be around people other than at the clinic. So once we get back to HL he goes to our room and stays there. They do have a room with 2 treadmills in it. We have used that a few times. He can go in it if no one else is in the room and I have to clean any surface that he might touch. He was not able to use the treadmill at all yesterday due to his low energy. I don't expect him to be strong enough to exercise again for at least a week or so. He takes lots of naps due to his lacks of energy.
So what else happens in our day? I do one or two loads of laundry. He is not able to use a towel more than once. Since he has NO immunity right now they don't want him to use a towel that might have any germs on it. His sheets have to be washed frequently too. Other than that I'm cooking for him or making protein shakes etc. We have to chart lots of stuff that you don't need to hear! :). My biggest struggle is getting him to eat, drink and get up and move enough.
We have been here for 8 days. They say it will probably about 30 days, but that all depends on how his body reacts to all this.
That is a little look into our lives right now. If anyone has any questions feel free to ask!
Blessings,
Kathy
7 - up and get ready for the day, he is moving pretty slowly right now - he is tired, in pain and feeling nauseous a bit
8:30 - leave for the clinic. They take vitals and draw blood every day. We wait for the lab results for at least an hour. Then depending on the results they may give him blood products or other various items. So we are in the clinic from 9 till 10:30-12:30
We leave there and on most days we stop at the grocery store that is near the clinic. I'm having a hard time cooking for him. He has to eat 123g of protein a day. That is a LOT of protein, especially since just about nothing sounds good to him. So I find out each day if there is anything that sounds good to him right then. I leave him in the van and run in and buy what sounds good. He is not able to eat anything that has been handled by anyone else or out in the open. So no deli foods, no restaurant food etc. That will be the rule for about 6 months or so.
Then back to the Hope Lodge. It has been a great thing for us. He has to be within 30 minutes of the hospital at all times. We live further than that from KU Med so we are staying at Hope Lodge. It is similar to a Ronald McDonald House, but it is run by the American Cancer Society. We have room there, just like a hotel room. There is a kitchen on the lower level that I can cook for us.
Kevin is not allowed visitors or to even be around people other than at the clinic. So once we get back to HL he goes to our room and stays there. They do have a room with 2 treadmills in it. We have used that a few times. He can go in it if no one else is in the room and I have to clean any surface that he might touch. He was not able to use the treadmill at all yesterday due to his low energy. I don't expect him to be strong enough to exercise again for at least a week or so. He takes lots of naps due to his lacks of energy.
So what else happens in our day? I do one or two loads of laundry. He is not able to use a towel more than once. Since he has NO immunity right now they don't want him to use a towel that might have any germs on it. His sheets have to be washed frequently too. Other than that I'm cooking for him or making protein shakes etc. We have to chart lots of stuff that you don't need to hear! :). My biggest struggle is getting him to eat, drink and get up and move enough.
We have been here for 8 days. They say it will probably about 30 days, but that all depends on how his body reacts to all this.
That is a little look into our lives right now. If anyone has any questions feel free to ask!
Blessings,
Kathy
Friday, January 13, 2012
Stem Cell Transplant Update #4
The night before my stem cell transplant the kids came over for a short visit. We worked on a puzzle that was a new puzzle but did not match the box. It was a challenge and we did not complete it. It was good to have them around for a couple of hours.
The next day I received my stem cell infusion. They did the procedure on Wednesday at about 1230. I was very tired because they gave me a big dose of benadryl to help me relax. After the infusion I had to wait about an hour before I could leave the hospital. The pictures below show the infusion.
So far I am handling everything well. I am tired. My appetite is somewhat depressed. But if it doesn't get any worse I will be very happy. I expect a decrease in all my levels tomorrow and for more side effects to begin to appear,
Kathy is doing great at keeping me on schedule, eating, walking, and staying awake. She is a trooper in all of this. This is the second time our vows of "for better or worse" have been tested medically and she is hanging in there. I do not know what I would do without her. Thanks Kathy for all your love and support. You are amazing and I love you in ways I can't even speak.
Sunday, January 8, 2012
Stem Cell Transplant Update #3
Getting ready for the next round
Today Kathy and I went to the Hope Lodge. I think we brought along about half of our household possessions (just kidding). The picture above is my bag plus my chemo hat generously provided by a great friend, Glen Harwood.
Our room is larger than most here in the Hope Lodge. Although it is small enough that 30 days will seem extremely long.
After we got checked in and some of our stuff loaded into the room we went out for dinner. Kind of a ceremonial last meal :) since I won't be able to go out to eat for the next 100 days. Being in Kansas City and KC BBQ fans you might expect we would end up at one of the better BBQ places in town. So we went to Fiorella's Jack Stack. As always it was enjoyable. If you have never experienced the joy of a Jack Stack rib or slice of brisket you don't know what you are missing. Come for a visit and I will personally escort you there.
Our day tomorrow begins at 0700 with an appointment for a PIC line at 0745 and my first chemo (melphalan) at 1100. Looking forward to it (just kidding).
Our kids provided us with a wonderful surprise yesterday. They gave us journals they had prepared for us with 56 days of reading that they each prepared, sharing the load. We are looking forward to reading what God laid on their hearts for this time.
Kevin
Today Kathy and I went to the Hope Lodge. I think we brought along about half of our household possessions (just kidding). The picture above is my bag plus my chemo hat generously provided by a great friend, Glen Harwood.
After we got checked in and some of our stuff loaded into the room we went out for dinner. Kind of a ceremonial last meal :) since I won't be able to go out to eat for the next 100 days. Being in Kansas City and KC BBQ fans you might expect we would end up at one of the better BBQ places in town. So we went to Fiorella's Jack Stack. As always it was enjoyable. If you have never experienced the joy of a Jack Stack rib or slice of brisket you don't know what you are missing. Come for a visit and I will personally escort you there.
Our day tomorrow begins at 0700 with an appointment for a PIC line at 0745 and my first chemo (melphalan) at 1100. Looking forward to it (just kidding).
Our kids provided us with a wonderful surprise yesterday. They gave us journals they had prepared for us with 56 days of reading that they each prepared, sharing the load. We are looking forward to reading what God laid on their hearts for this time.
Kevin
Wednesday, January 4, 2012
Stem Cell Transplant update #2
Well, it is 10:20 am on the 4th. We are sitting in the Apheresis clinic at KU Medical Center. Kevin's numbers were great this morning so they were able to start the stem cell collection at 9:30. Hopefully they will collect enough today so he won't have to do this again, but we won't know that until late in the day.
We had to be here at 7 this morning for the bloodwork. Then there was a 1 1/2 hour wait on the lab work. Hook him up and get the machine ready and now is the 5 hour procedure. It doesn't seem too bad, except he can't bend either of his arms!
Blessings,
Kathy
We had to be here at 7 this morning for the bloodwork. Then there was a 1 1/2 hour wait on the lab work. Hook him up and get the machine ready and now is the 5 hour procedure. It doesn't seem too bad, except he can't bend either of his arms!
Blessings,
Kathy
Monday, January 2, 2012
Stem Cell Transplant Update #1
On Saturday, December 31st I began a round of injections of a drug designed to get my stem cells out of my bone marrow and into my blood stream. This is necessary so I will be prepared for the stem cell collection. The drugs have minimal side effects and the side effects are actually good because it is an indication the drugs are working as desired.
Wednesday, January 4th I will have my first stem cell collection. That entails being hooked up to a machine that moves my blood in and out of my body 5 times in 5 hours. The blood goes through a centrifuge and the stem cells are separated from the other components. Once they are gathered they will freeze them for use later. So on Wednesday you can expect to see some photos of the machine in action and me just hanging out.
I am glad to be at this point. Although the whole process is risky I believe it is the right course of action. I am looking forward to reporting more to you next week.
Last night in church we sang this familiar praise song by Matt Redmond and I thought I would share some if it with you....
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
I was feeling kind of down last night and this song reminded me of how important it is to always praise God no matter what circumstances we find ourselves in.
Kevin
Wednesday, January 4th I will have my first stem cell collection. That entails being hooked up to a machine that moves my blood in and out of my body 5 times in 5 hours. The blood goes through a centrifuge and the stem cells are separated from the other components. Once they are gathered they will freeze them for use later. So on Wednesday you can expect to see some photos of the machine in action and me just hanging out.
I am glad to be at this point. Although the whole process is risky I believe it is the right course of action. I am looking forward to reporting more to you next week.
Last night in church we sang this familiar praise song by Matt Redmond and I thought I would share some if it with you....
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
I was feeling kind of down last night and this song reminded me of how important it is to always praise God no matter what circumstances we find ourselves in.
Kevin
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