Hi everyone,
We've had a progressive Saturday here. Eric's numbers continue to improve. The hematologist said at 2:30pm today that he was very happy with Eric's progress. Eric hasn't needed blood products (red blood cells, platelets, or plasma) in over 12 hours. His body is holding its own.
Eric has one more chemo treatment scheduled for Sunday. The doctor expects Eric's cancerous cells to drop to the point (from 20,000 blasts today to 5,000 blasts) where they can begin phase two of the treatment mid-next week.
The primary objective today is to reduce the fluid his body is retaining. They have been pumping him with 6000 ml of fluid every day, and he is only getting rid of 2000 ml of fluid. Due to the fluid retention, his weight has gone up by 40 lbs. They know this because his bed can measure his weight. And yes, Eric has cankles. : ) For the first time in my life, I'm not the only one in my family that gains 40 lbs the week of Christmas.
Eric is still struggling to get enough oxygen. The doctors are now thinking that his lung inflammation (causing the breathing problems) is just a side effect of the excess fluid. The same swelling we are seeing in his feet and arms is also happening in his lungs. We hope that is true. Once the fluid retention is under control and breathing becomes easier, Eric can come off the ventilator. Which means he can wake up and talk to us.
Thank you to Louis & Vera Stumpf and Becky May for the cards. We received them yesterday and today.
Melissa is feeling better. She is trying to stay away from the hospital to protect Eric. I know it's really hard for her. Hopefully she is feeling well tomorrow and can come back.
Love,
Sara
Saturday, December 19, 2009
Friday, December 18, 2009
Quick Friday Night Update
Eric remains in a stable condition. The doctor is able to back off on how many blood products he is receiving, also! He had his third dose of chemo this afternoon and his white blood cells are down to 31.5 thousand -- it just keeps dropping! He has only one more dose in this round of chemo on Sunday. He had some more minor complications with his ventilation tubes last night, so he is back up to a high percentage of oxygen being delivered. The respiratory therapist said that the chemo could make his lungs worse for a little while till the rest of his body catches up, so this is to be expected. Overall, he seems to be resting comfortably, which is absolutely great and is following all the right trends.
As for me, I left the hospital last night when my throat started feeling strange, and it turns out I came down with strep throat... fantastic timing, right? The good news is that I was able to start taking medicine today and have been getting a lot of sleep at home in Lafayette. I just hope I didn't pass anything on to the rest of the family. I shouldn't be contagious for too much longer, so that is good, too. I promise to give a more thorough update once I get some more sleep and get back to the hospital.
Melissa
As for me, I left the hospital last night when my throat started feeling strange, and it turns out I came down with strep throat... fantastic timing, right? The good news is that I was able to start taking medicine today and have been getting a lot of sleep at home in Lafayette. I just hope I didn't pass anything on to the rest of the family. I shouldn't be contagious for too much longer, so that is good, too. I promise to give a more thorough update once I get some more sleep and get back to the hospital.
Melissa
Thursday, December 17, 2009
Another move and more good news
They just now moved Eric back up to the MICU on the 6th floor (room B8). If you sent a card to the other room, it will still find him.
The nurses on the new floor are qualified to give him chemo. The other floor we had to request nurses to give him the chemo drip. He continues to be stable and is looking much more comfortable. I think getting the new bed and having no more problems with the ventilation tube has helped out a ton! Plus, the new bed is just cool! I think Sara talked about it in her previous post.
I don't have new updates on his blood counts other than the white blood cells. They are now down to 53,000 (from 100,000+ when he checked in) and continue to drop. The doctor said that his other counts remain fine and they are doing everything they can to pump more blood products into him. The doctor looks more confident everyday he comes in to see him, which is also reassuring. He explained to us yesterday that the cancer cells cause a reaction in his body that attacks the platelets and clotting factors, so that whole problem will start getting easier and easier to manage as the chemo keeps working. They did mention that they don't think he will get off the ventilator until mid next week. Obviously, we had hoped that he'd be off it sooner so that he can be awake, but if that is what it takes (and the worst news we get), I'll take it!
We also discussed more about what will happen once he is moved to the oncology ward. (This will happen once he is off the ventilator.) They said that they really encourage family and friends to come visit him. Obviously if you are sick, you will not be allowed inside, but otherwise it really helps patients get through the recovery period. They even allow pets to come visit, so he'll get to see Bailey! While he is in the ICU, though, they limit the number of people that can see him to two, so please wait to come visit until he is more stable and able to be off the ventilator. Other than that, there are no more updates. We just need to continue to wait and monitor his blood to get him everything that he needs. This is a big lesson in pantience for me. I feel like I can't wait to hear the latest blood counts, can't wait for the next round of chemo, can't wait till they drop the settings on the ventilator a little more, can't wait till he gets to wake up. I really don't want to rush him, but I just want things NOW! Somehow I don't think stomping my foot and throwing a temper tantrum like I used to do as a kid will speed anything up, though.
I also wanted to thank everyone for your posts, emails, phone calls and cards. It really is very cheering to hear from everyone and know that we are cared for.
Love as always,
Melissa
PS the doctor also mentioned that he's really excited to see Eric stand up. He honestly didn't believe us at first when we told him Eric's height and weight. He had to see how his legs were tucked up in the bed to confirm it for himself.
The nurses on the new floor are qualified to give him chemo. The other floor we had to request nurses to give him the chemo drip. He continues to be stable and is looking much more comfortable. I think getting the new bed and having no more problems with the ventilation tube has helped out a ton! Plus, the new bed is just cool! I think Sara talked about it in her previous post.
I don't have new updates on his blood counts other than the white blood cells. They are now down to 53,000 (from 100,000+ when he checked in) and continue to drop. The doctor said that his other counts remain fine and they are doing everything they can to pump more blood products into him. The doctor looks more confident everyday he comes in to see him, which is also reassuring. He explained to us yesterday that the cancer cells cause a reaction in his body that attacks the platelets and clotting factors, so that whole problem will start getting easier and easier to manage as the chemo keeps working. They did mention that they don't think he will get off the ventilator until mid next week. Obviously, we had hoped that he'd be off it sooner so that he can be awake, but if that is what it takes (and the worst news we get), I'll take it!
We also discussed more about what will happen once he is moved to the oncology ward. (This will happen once he is off the ventilator.) They said that they really encourage family and friends to come visit him. Obviously if you are sick, you will not be allowed inside, but otherwise it really helps patients get through the recovery period. They even allow pets to come visit, so he'll get to see Bailey! While he is in the ICU, though, they limit the number of people that can see him to two, so please wait to come visit until he is more stable and able to be off the ventilator. Other than that, there are no more updates. We just need to continue to wait and monitor his blood to get him everything that he needs. This is a big lesson in pantience for me. I feel like I can't wait to hear the latest blood counts, can't wait for the next round of chemo, can't wait till they drop the settings on the ventilator a little more, can't wait till he gets to wake up. I really don't want to rush him, but I just want things NOW! Somehow I don't think stomping my foot and throwing a temper tantrum like I used to do as a kid will speed anything up, though.
I also wanted to thank everyone for your posts, emails, phone calls and cards. It really is very cheering to hear from everyone and know that we are cared for.
Love as always,
Melissa
PS the doctor also mentioned that he's really excited to see Eric stand up. He honestly didn't believe us at first when we told him Eric's height and weight. He had to see how his legs were tucked up in the bed to confirm it for himself.
Big Boy Bed and Stable Condition
Hi everyone,
Overall, we had a successful Wednesday in the ICU. We are still in TICU Room 4A.
We started Tues night with a new bed, so Eric's feet no longer hang off the end. :) Our excellent night nurse found this longer bed that also rotates his upper body to move the fluid in his lungs around. This has made Eric much more comfortable.
We continued to fiddle with the breathing tube during the early Wed morning hours, finally changing the tube for the 2nd time. This 3rd tube is longer, has a larger diameter, and is working well. They are just not use to someone of Eric's height. A normal size tube didn't work for him. So...some early morning hours of frustration and anxiety on our part, because we were fighting the equipment not the actual lack of oxygen. In the end, this 3rd tube has resolved the equipment issues.
Eric continued to receive sedation meds, pain meds, plasma, and platelets throughout the day. He is also on Insulin to counteract the sugar in the meds. Eric continues to get multiple X-rays daily to check the fluid in his lungs. It's funny, they have a portable X-ray machine that rolls into the room. They have to take two X-rays, because the usual one picture can't capture the entire length of his lungs. In general Eric was very relaxed all day enabling Melissa to take a short nap in the afternoon.
Eric received his 2nd chemo treatment around 1pm. He is taking the chemo treatments very well, having zero negative reactions/symptoms to the treatment. This is a real benefit of being heavily sedated.
Eric started a feeding tube around 3pm, the first food since Sunday. Also we were able to bump down the % of oxygen being feed into the breathing tube from 100 to 70 to 50%. This is good news, meaning Eric is able to breath in more oxygen on his own. We need to be able to get down to 30% oxygen feed before the breathing tube can be removed.
Around 5pm, Eric's hematology doctor (who we really like) added an additional drug to help blood clot in the digestive tract. All the breathing tube issues caused bleeding that the doctor was concerned about. The doctor informed us that Eric's white blood cells (or leukemic cells) are down from 80,000 to 50,000. This is great news!!! We want to be around 5,000. The doctor also called Eric stable, which we were excited to hear.
Melissa is getting a much needed good night sleep on Wed night. I am so grateful to have such a loving, dedicated, strong sister-in-law; who has weathered this with grace, intelligence, and very very little sleep. Melissa is amazing. Eric is so lucky to have her. Thank you for all the emails, phone calls, and support. It is so wonderful to have great friends and family.
Love,
Sara [Eric's older and wiser (or so I keep telling him) sister]
Overall, we had a successful Wednesday in the ICU. We are still in TICU Room 4A.
We started Tues night with a new bed, so Eric's feet no longer hang off the end. :) Our excellent night nurse found this longer bed that also rotates his upper body to move the fluid in his lungs around. This has made Eric much more comfortable.
We continued to fiddle with the breathing tube during the early Wed morning hours, finally changing the tube for the 2nd time. This 3rd tube is longer, has a larger diameter, and is working well. They are just not use to someone of Eric's height. A normal size tube didn't work for him. So...some early morning hours of frustration and anxiety on our part, because we were fighting the equipment not the actual lack of oxygen. In the end, this 3rd tube has resolved the equipment issues.
Eric continued to receive sedation meds, pain meds, plasma, and platelets throughout the day. He is also on Insulin to counteract the sugar in the meds. Eric continues to get multiple X-rays daily to check the fluid in his lungs. It's funny, they have a portable X-ray machine that rolls into the room. They have to take two X-rays, because the usual one picture can't capture the entire length of his lungs. In general Eric was very relaxed all day enabling Melissa to take a short nap in the afternoon.
Eric received his 2nd chemo treatment around 1pm. He is taking the chemo treatments very well, having zero negative reactions/symptoms to the treatment. This is a real benefit of being heavily sedated.
Eric started a feeding tube around 3pm, the first food since Sunday. Also we were able to bump down the % of oxygen being feed into the breathing tube from 100 to 70 to 50%. This is good news, meaning Eric is able to breath in more oxygen on his own. We need to be able to get down to 30% oxygen feed before the breathing tube can be removed.
Around 5pm, Eric's hematology doctor (who we really like) added an additional drug to help blood clot in the digestive tract. All the breathing tube issues caused bleeding that the doctor was concerned about. The doctor informed us that Eric's white blood cells (or leukemic cells) are down from 80,000 to 50,000. This is great news!!! We want to be around 5,000. The doctor also called Eric stable, which we were excited to hear.
Melissa is getting a much needed good night sleep on Wed night. I am so grateful to have such a loving, dedicated, strong sister-in-law; who has weathered this with grace, intelligence, and very very little sleep. Melissa is amazing. Eric is so lucky to have her. Thank you for all the emails, phone calls, and support. It is so wonderful to have great friends and family.
Love,
Sara [Eric's older and wiser (or so I keep telling him) sister]
Tuesday, December 15, 2009
Tuesday December 15th
Eric had mentioned a couple days ago that it would probably be beneficial to create a blog of his progress.
For those of you who haven't heard, Eric was officially diagnosed with leukemia. The type of leukemia is called Acute Myeloid Leukemia (AML) subset M3. This subset is also called promyeloid leukemia, so sometimes you will see APL in literature. Discovering that he had this subset was really good news for him, because they have a very good success rate with curing this disease, and will probably only need a few rounds of chemo. This disease comes on very fast.
Thurs Dec 3 - Thurs Dec 10
We had first really started noticing bruises around the beginning of the month (a week ago Thursday). By Saturday, he started getting pretty bad headaches that wouldn't go away, and feeling a little feverish. He felt well enough to go to work all last week, and only occasionally complained of headaches. Although, Eric never really complains much about ANY sort of pain. By Tuesday, he had gotten a lot more bruises and red spots on his legs, for no reason. I've since learned that these spots are called purpura (1-3 cm in diameter) and the little pin prick red dots are called petachiae.
Fri Dec 11
We started getting worried, and he went in to see the family doctor mid-day on Friday (Dec 11). They right away put him in the Clarian-Arnett hospital in Lafayette to do some blood work, since those signs could have meant any number of things. He was still feeling really well, and I basically had to wrestle the keys away from him to drive him to the hospital. I also had to put my foot down NOT to bring his work laptop into the hospital with him.
Later that night, we found out that night that his platelet count (one of the things in blood that is used to form clots) were VERY low (he had roughly 10,000 per dL when normal is 150,000) and his white blood cell count was VERY high (he had a little over 100,000 when normal is 5,000 - 10,000). The oncologist there came to see us and tell us that he suspected leukemia, and that a bone marrow biopsy was needed to confirm the diagnosis. He was very nice and answered a lot of our questions. Obviously we were surprised and shocked, but you know Eric, he took it in stride and wouldn't let it bring him down. He kept joking around with the nurses (yes, some of them were cute).
Things moved pretty fast then. He was transported to Indiana University Hospital in Indianapolis to get the best treatment in the area. Of course he had all sorts of stories about the ambulance ride on the way down (apparently it maxed out at 85... he WOULD be the one thinking of this kind of thing) and complained at the end that he didn't get any cool meds on the way down (joking of course). We spent the night in the ICU, where they started giving him blood products (platelets, plasma (blood juice with clotting factors in it) and cryoprecipitates (more clotting factors with fibrinogen)). These were all to get his blood to clot better, which is why he had been bruising.
Sat Dec 12 - Sun Dec 13
They decided the next day (probably after another one of his jokes) that he was entirely too healthy for the ICU and moved us to the PCU, which is a step down. We had a fairly uneventful couple of days where they kept giving him blood products to improve his numbers and a drug called hydroxyurea that is supposed to attack the bad white blood cells that are cancerous. Sunday night, he took a couple speedy laps around the PCU floor, and when I say speedy, I mean SPEEDY.
Mon Dec 14
Early Monday morning (around 2 am) he started having trouble breathing. Apparently, the cancer had caused some problems with he lungs and was blocking off part of it. So even though he was taking breaths, he was not getting enough oxygen in his blood. This all meant that he had to be sedated and had a ventilation tube put down his throat. I have to admit, this was pretty scary. I don't want to go into too much detail, because he is doing much better now and I'd rather not think of it anymore. He is still on the ventilator and uncounscious, but I guess he is more comfortable that way. They were able to do his bone marrow biospsy -- they said that his bone was so strong that it actually bent the needle, which they had never seen before. He is such a stong, healthy guy. The hemotologist that is working with us is very nice, and is good about explaining everything to us and letting us ask questions. He was very honest and said that this week is the highest risk for him. Since his blood's clotting capability is not good at all, if he starts to bleed, he will not be able to stop. However, since they've been giving him the blood products, he is doing much much better.
Tue Dec 15
The doctor said Tues morning that with his blood counts, he could take him to surgery if needed and be alright, but his body is not maintaining these numbers and will not be able to maintain them until the white blood cell count is brought down with chemo. He already had one dose of chemo yesterday at 1 pm, and is scheduled for more doses on Wednesday, Friday, and Sunday. This should kill off pretty much all of the cancer, and he'll be given 3 to 4 more weeks of recovery time in the hospital. They said that they used to send patients home at this time, but always had complications with bleeding and infection, so they want to keep him here to watch his more carefully. He can get what he needs a lot faster that way. We are paying close attention to his blood numbers, and as of right now (5 pm on Tuesday) they are:
Platelets (clotting): 78,000 (normal number is 150,000 but they are happy with 50,000)
Fibrinogen (clotting factor): 162 (they want anything higher than 150)
INR (internation ratio for clotting capability): 1.57 (they want it to be less than 1.4) Since it is a ratio, normal is 1, and anything higher means thinner blood.
White blood cells, WBCs (these include the cancerous cells, called blasts): 97,200 (normaly is 5 - 10 thousand)
Once we get his WBCs down with the chemo, the cancerous cells will stop attacking the platelets and other clotting factors, which will get us out of this high risk time. Also, they can start giving him the vitamin A derivative pill (also called retinoic acid or ATRA) which will help the chemo even more.
All in all, it has been rough the last couple of days. It is hard seeing him like this, but I know he is much more comfortable this way. I'll be really happy when he is breathing well enough on his own to take him off the ventilator. We've been talking to him and holding his hands. He does respond to us, which is comforting. The nurses occasionally bring him up enough for him to open his eyes, squeeze his hands, wiggle his toes and move head just to make sure he is alright. This morning, when he was more aware, he was able to shake his head no when we asked if he was in pain, and to nod his head when I said I loved him.
Luckily, he will not remember any of these last couple days, which includes the biopsy and his first round of chemo. I'm just anxious to see him awake and able to talk with me once more. Every day that goes by makes us that much closer to getting out of the high risk time. We've been getting so many well wishes and love from so many people. We really are blessed with having so many good people care for us. People are asking about what to do or send. We cannot receive fresh fruit or flowers, and right now your support and prayers are what we need.
He is currently in room A4 of the TICU on the 4th floor. They are really limiting the number of people who can see him due to risk of infection and the fact that he needs so much care. He is type A negative. People have been asking about how to go about donating for him. I believe everything is done through the Red Cross, and I'm not sure if you can request a recipient. But I know first hand how desperately people can need blood products and every little bit helps.
I love you all, and I'll try to keep this updated as time goes on.
Melissa
For those of you who haven't heard, Eric was officially diagnosed with leukemia. The type of leukemia is called Acute Myeloid Leukemia (AML) subset M3. This subset is also called promyeloid leukemia, so sometimes you will see APL in literature. Discovering that he had this subset was really good news for him, because they have a very good success rate with curing this disease, and will probably only need a few rounds of chemo. This disease comes on very fast.
Thurs Dec 3 - Thurs Dec 10
We had first really started noticing bruises around the beginning of the month (a week ago Thursday). By Saturday, he started getting pretty bad headaches that wouldn't go away, and feeling a little feverish. He felt well enough to go to work all last week, and only occasionally complained of headaches. Although, Eric never really complains much about ANY sort of pain. By Tuesday, he had gotten a lot more bruises and red spots on his legs, for no reason. I've since learned that these spots are called purpura (1-3 cm in diameter) and the little pin prick red dots are called petachiae.
Fri Dec 11
We started getting worried, and he went in to see the family doctor mid-day on Friday (Dec 11). They right away put him in the Clarian-Arnett hospital in Lafayette to do some blood work, since those signs could have meant any number of things. He was still feeling really well, and I basically had to wrestle the keys away from him to drive him to the hospital. I also had to put my foot down NOT to bring his work laptop into the hospital with him.
Later that night, we found out that night that his platelet count (one of the things in blood that is used to form clots) were VERY low (he had roughly 10,000 per dL when normal is 150,000) and his white blood cell count was VERY high (he had a little over 100,000 when normal is 5,000 - 10,000). The oncologist there came to see us and tell us that he suspected leukemia, and that a bone marrow biopsy was needed to confirm the diagnosis. He was very nice and answered a lot of our questions. Obviously we were surprised and shocked, but you know Eric, he took it in stride and wouldn't let it bring him down. He kept joking around with the nurses (yes, some of them were cute).
Things moved pretty fast then. He was transported to Indiana University Hospital in Indianapolis to get the best treatment in the area. Of course he had all sorts of stories about the ambulance ride on the way down (apparently it maxed out at 85... he WOULD be the one thinking of this kind of thing) and complained at the end that he didn't get any cool meds on the way down (joking of course). We spent the night in the ICU, where they started giving him blood products (platelets, plasma (blood juice with clotting factors in it) and cryoprecipitates (more clotting factors with fibrinogen)). These were all to get his blood to clot better, which is why he had been bruising.
Sat Dec 12 - Sun Dec 13
They decided the next day (probably after another one of his jokes) that he was entirely too healthy for the ICU and moved us to the PCU, which is a step down. We had a fairly uneventful couple of days where they kept giving him blood products to improve his numbers and a drug called hydroxyurea that is supposed to attack the bad white blood cells that are cancerous. Sunday night, he took a couple speedy laps around the PCU floor, and when I say speedy, I mean SPEEDY.
Mon Dec 14
Early Monday morning (around 2 am) he started having trouble breathing. Apparently, the cancer had caused some problems with he lungs and was blocking off part of it. So even though he was taking breaths, he was not getting enough oxygen in his blood. This all meant that he had to be sedated and had a ventilation tube put down his throat. I have to admit, this was pretty scary. I don't want to go into too much detail, because he is doing much better now and I'd rather not think of it anymore. He is still on the ventilator and uncounscious, but I guess he is more comfortable that way. They were able to do his bone marrow biospsy -- they said that his bone was so strong that it actually bent the needle, which they had never seen before. He is such a stong, healthy guy. The hemotologist that is working with us is very nice, and is good about explaining everything to us and letting us ask questions. He was very honest and said that this week is the highest risk for him. Since his blood's clotting capability is not good at all, if he starts to bleed, he will not be able to stop. However, since they've been giving him the blood products, he is doing much much better.
Tue Dec 15
The doctor said Tues morning that with his blood counts, he could take him to surgery if needed and be alright, but his body is not maintaining these numbers and will not be able to maintain them until the white blood cell count is brought down with chemo. He already had one dose of chemo yesterday at 1 pm, and is scheduled for more doses on Wednesday, Friday, and Sunday. This should kill off pretty much all of the cancer, and he'll be given 3 to 4 more weeks of recovery time in the hospital. They said that they used to send patients home at this time, but always had complications with bleeding and infection, so they want to keep him here to watch his more carefully. He can get what he needs a lot faster that way. We are paying close attention to his blood numbers, and as of right now (5 pm on Tuesday) they are:
Platelets (clotting): 78,000 (normal number is 150,000 but they are happy with 50,000)
Fibrinogen (clotting factor): 162 (they want anything higher than 150)
INR (internation ratio for clotting capability): 1.57 (they want it to be less than 1.4) Since it is a ratio, normal is 1, and anything higher means thinner blood.
White blood cells, WBCs (these include the cancerous cells, called blasts): 97,200 (normaly is 5 - 10 thousand)
Once we get his WBCs down with the chemo, the cancerous cells will stop attacking the platelets and other clotting factors, which will get us out of this high risk time. Also, they can start giving him the vitamin A derivative pill (also called retinoic acid or ATRA) which will help the chemo even more.
All in all, it has been rough the last couple of days. It is hard seeing him like this, but I know he is much more comfortable this way. I'll be really happy when he is breathing well enough on his own to take him off the ventilator. We've been talking to him and holding his hands. He does respond to us, which is comforting. The nurses occasionally bring him up enough for him to open his eyes, squeeze his hands, wiggle his toes and move head just to make sure he is alright. This morning, when he was more aware, he was able to shake his head no when we asked if he was in pain, and to nod his head when I said I loved him.
Luckily, he will not remember any of these last couple days, which includes the biopsy and his first round of chemo. I'm just anxious to see him awake and able to talk with me once more. Every day that goes by makes us that much closer to getting out of the high risk time. We've been getting so many well wishes and love from so many people. We really are blessed with having so many good people care for us. People are asking about what to do or send. We cannot receive fresh fruit or flowers, and right now your support and prayers are what we need.
He is currently in room A4 of the TICU on the 4th floor. They are really limiting the number of people who can see him due to risk of infection and the fact that he needs so much care. He is type A negative. People have been asking about how to go about donating for him. I believe everything is done through the Red Cross, and I'm not sure if you can request a recipient. But I know first hand how desperately people can need blood products and every little bit helps.
I love you all, and I'll try to keep this updated as time goes on.
Melissa
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