Eric called me first thing this morning to brag that his neutrophil count was .6! Incredible! The head doctor visited with us today to share the good news that now that Eric's count is .5 or higher, he is considered "engrafted." That means Debbie's stem cells have taken hold and are growing rapidly enough that they can measure the growth.
Eric still has to be weaned away from his IV stand, which is all that is preventing him from going home. He has become so attached to it over the past month! Today they took away his IV nutrition bag because Eric can now consume enough calories on his own. He isn't quite up to drinking enough water for them to take away his hydration bag, but should be there tomorrow. And then it is a matter of changing all of his IV medications to pills. Some of the pills are hard on the system so it takes a little time for the adjustment.
The most exciting news from the doctor was that Eric could leave the 8th floor of LDS hospital and go outside! Eric entered the hospital on August 19, and now on September 18, he was able to finally exit the hospital. For the past few weeks Eric has had to wear a gown over his clothes, a mask with a filter, and gloves every time he left his room. The doctor told him if he dressed up in all his protective gear he could leave the building as long as he stayed on the hospital property. I think the doctor thought Eric would stand in the entryway of the hospital, smell the fresh air through his filter, and come back in since he was still attached to his IV pole. Not our Eric! With two of his walking buddies he made a run for it and walked several blocks, dressed in his protective gear and dragging an IV stand!
To quote the doctor, it is possible that Eric will be discharged Friday but probable that he will be discharged on Monday. Discharging a bone marrow transplant recipient is cumbersome, so they don't tend to do it on the weekend. Either way, we are pretty excited to think that our hospital stay is almost over. Good thing, because I am almost out of chocolate! (Not a plea for more chocolate. Eric is the one who needs to gain weight, not me!)
Wednesday, September 18, 2013
Tuesday, September 17, 2013
Amazing!
I answered my phone early this morning and was shocked to hear Eric. It was MY Eric, the one who is upbeat and lively in the morning. The Eric who has an adrenaline high from swimming a mile and wishes it was noon so he could go walking for an hour. The difference between this Eric and the Eric I have been talking to first thing in the morning for the past month is dramatic.
Eric had a good night of sleep last night! Ever since about the middle of June Eric hasn't been able to sleep more than an hour at a time. At first his pain was too great to sleep comfortably. Then the problems with nausea and other health issues interfered. At the hospital he has been hooked up to so many IVs it was impossible to sleep for very long without something needing to be changed out or developing problems. Eric is down to just a few IVs and the pain and nausea are gone. Last night Eric only woke up twice! That is huge!
Also, Eric's neutrophils are up to .4 this morning! That is also huge! Ever day his blood counts are getting better and Eric can tell that his body is healing. Yesterday Eric had three very small meals. Today he had a big bowl of oatmeal and raisins for breakfast. What a blessing!
Eric had a good night of sleep last night! Ever since about the middle of June Eric hasn't been able to sleep more than an hour at a time. At first his pain was too great to sleep comfortably. Then the problems with nausea and other health issues interfered. At the hospital he has been hooked up to so many IVs it was impossible to sleep for very long without something needing to be changed out or developing problems. Eric is down to just a few IVs and the pain and nausea are gone. Last night Eric only woke up twice! That is huge!
Also, Eric's neutrophils are up to .4 this morning! That is also huge! Ever day his blood counts are getting better and Eric can tell that his body is healing. Yesterday Eric had three very small meals. Today he had a big bowl of oatmeal and raisins for breakfast. What a blessing!
Sunday, September 15, 2013
My how time flies when you are having fun
Tomorrow it will be four weeks since Eric was admitted to LDS hospital. Days can seem long, but the four weeks have flown by. Eric in the hospital is our new normal and it will be interesting to see how we adapt when Eric comes home.
Speaking of coming home, Eric's neutrophil count was .2 on Saturday and .3 today! We are so excited! He just has to make it to .5 in order to be considered for discharge. So far Eric hasn't had any pain with the growth of the new cells in his bone marrow cavities. In fact, tonight they are taking Eric off of the pain meds they were giving him for the mouth sores and other GI track woes.
Eric also started eating today after a week of nourishment through his IV. His first solid food was when two sets of husband and wife missionaries brought us the sacrament. That seemed like an excellent way to start back on food, and we were both pleased that he tolerated it well. From there Eric ate a small container of applesauce, two bites of a banana, a saltine cracker, and two club crackers--all carefully spaced throughout the day. His doctor teased Eric that it would be a long time weaning him off of the IV nourishment if he only ate 10 calories a day. Having lost 25 pounds, Eric is lean and not so mean.
Thank you for your thoughts and prayers. We know they have made a difference. Thank you also for your calls, visits, emails and notes. Eric and I have felt very loved and remembered. So many of you have made a difference in our ability to cope with the challenges we have faced. We love every one of you!
In particular I want to mention three very special men who have each visited Eric dozens of times. They have listened to Eric's woes, given Eric something to look forward to, kept Eric's spirits up, walked laps with him around the nurses' station, and given me some free time. It would be amazing to have one friend like this, but to have three is a miracle. I don't want to mention them by name, but Jeff, Tom and Steve, you know who you are!
Speaking of coming home, Eric's neutrophil count was .2 on Saturday and .3 today! We are so excited! He just has to make it to .5 in order to be considered for discharge. So far Eric hasn't had any pain with the growth of the new cells in his bone marrow cavities. In fact, tonight they are taking Eric off of the pain meds they were giving him for the mouth sores and other GI track woes.
Eric also started eating today after a week of nourishment through his IV. His first solid food was when two sets of husband and wife missionaries brought us the sacrament. That seemed like an excellent way to start back on food, and we were both pleased that he tolerated it well. From there Eric ate a small container of applesauce, two bites of a banana, a saltine cracker, and two club crackers--all carefully spaced throughout the day. His doctor teased Eric that it would be a long time weaning him off of the IV nourishment if he only ate 10 calories a day. Having lost 25 pounds, Eric is lean and not so mean.
Thank you for your thoughts and prayers. We know they have made a difference. Thank you also for your calls, visits, emails and notes. Eric and I have felt very loved and remembered. So many of you have made a difference in our ability to cope with the challenges we have faced. We love every one of you!
In particular I want to mention three very special men who have each visited Eric dozens of times. They have listened to Eric's woes, given Eric something to look forward to, kept Eric's spirits up, walked laps with him around the nurses' station, and given me some free time. It would be amazing to have one friend like this, but to have three is a miracle. I don't want to mention them by name, but Jeff, Tom and Steve, you know who you are!
Friday, September 13, 2013
Small But Good
The next step in Eric's recovery is finding evidence that Debbie's stem cells are now growing in Eric's bone marrow cavities. Since it would be rather painful to open up his bones and take a peek, they monitor his blood every day looking for evidence of neutrophils, which are a component of white blood cells.
Wednesday was the first day the lab could find any neutrophils in Eric's blood, and it was .1, which I guess is as low as they can be without being the familiar 0 we have had until Wednesday. The doctor told us not to be disappointed if Thursday's count was back down to 0 because it is not unusual for neutrophils to mess with your mind like that. Fortunately, they stayed at .1 on Thursday, which led us to believe they might actually go up on Friday to .11, or maybe even .12! But those silly little neutrophils aren't budging. Three days in a row they have been .1!
We have heard rumors that Eric can go home when the neutrophils reach .5, so you can understand the frustration of three days in a row at .1 The doctors have reassured us that they want the neutrophils to come in slowly or they will cause the same bone pain that Eric experienced with the cancer cells when they were growing vigorously in his bone marrow cavities.
Patience is a virtue, and one that we have been aggressively pursuing, trying to achieve it quickly so we can hurry on to the next virtue. I should never update the blog after 9:00 p.m.! Good night folks!
Wednesday was the first day the lab could find any neutrophils in Eric's blood, and it was .1, which I guess is as low as they can be without being the familiar 0 we have had until Wednesday. The doctor told us not to be disappointed if Thursday's count was back down to 0 because it is not unusual for neutrophils to mess with your mind like that. Fortunately, they stayed at .1 on Thursday, which led us to believe they might actually go up on Friday to .11, or maybe even .12! But those silly little neutrophils aren't budging. Three days in a row they have been .1!
We have heard rumors that Eric can go home when the neutrophils reach .5, so you can understand the frustration of three days in a row at .1 The doctors have reassured us that they want the neutrophils to come in slowly or they will cause the same bone pain that Eric experienced with the cancer cells when they were growing vigorously in his bone marrow cavities.
Patience is a virtue, and one that we have been aggressively pursuing, trying to achieve it quickly so we can hurry on to the next virtue. I should never update the blog after 9:00 p.m.! Good night folks!
Tuesday, September 10, 2013
You have to experience the bad in order to appreciate the good
I had intended to update the blog yesterday because it marked three weeks in the hospital, but I just didn't have the heart to do it. Sunday and Monday were pretty tough for Eric. The mouth sores continued to get worse until Eric's entire lower face was swollen. On Sunday he was only able to drink two protein drinks and that evening they hooked him up through his IV to a nutrition supplement.
Eric hasn't had any nutrition by mouth since then. We have been assured by the medical staff that almost all chemo patients at some point have to switch to total nutrition through their IV because of mouth sores. It hurts to swallow, so Eric has a suction tube to vacuum out his mouth when the saliva builds up.
Oddly enough, now that Eric isn't trying to swallow either food or saliva, he is feeling better. His mouth and digestive tract are having a chance to rest, and that has made Eric less anxious because eating had become such a burden that he dreaded meal times. Eric has also gotten on top of the pain and is sleeping better.
Today Eric was really in the zone and doing great! His mouth sores are still terrible and he has developed some interesting rashes, but he is cheerful, energetic and funny. He looks better than a cancer patient has a right to look. One of the nurses told Eric that he had had a good ride so far, and another just shook his head when he saw what Eric was reading (non-fiction 19th century Utah history) and said that no one else has been able to read those kind of books when they are at the stage Eric is at.
I came in from scrounging up some supper and found Eric telling two male nurses about hiking in southern Utah. The nurses were on the edge of their seats, listening to Eric's stories. Thanks to kind friends and family, Eric's room is full of pictures of southern Utah, and he would point to various pictures and tell where it was taken and the highlights of that particular place. It was pretty funny to observe.
We are still waiting for Eric's neutrophils (part of the white blood cell count) to start growing. They are at 0 right now, and as they start to develop they will indicate the stem cell transplant was a success and that his new immune system is starting to develop. Once the neutrophils starts to add up the mouth sores will go away, Eric will feel better, and we will be almost ready to head home. Hooray!
Eric hasn't had any nutrition by mouth since then. We have been assured by the medical staff that almost all chemo patients at some point have to switch to total nutrition through their IV because of mouth sores. It hurts to swallow, so Eric has a suction tube to vacuum out his mouth when the saliva builds up.
Oddly enough, now that Eric isn't trying to swallow either food or saliva, he is feeling better. His mouth and digestive tract are having a chance to rest, and that has made Eric less anxious because eating had become such a burden that he dreaded meal times. Eric has also gotten on top of the pain and is sleeping better.
Today Eric was really in the zone and doing great! His mouth sores are still terrible and he has developed some interesting rashes, but he is cheerful, energetic and funny. He looks better than a cancer patient has a right to look. One of the nurses told Eric that he had had a good ride so far, and another just shook his head when he saw what Eric was reading (non-fiction 19th century Utah history) and said that no one else has been able to read those kind of books when they are at the stage Eric is at.
I came in from scrounging up some supper and found Eric telling two male nurses about hiking in southern Utah. The nurses were on the edge of their seats, listening to Eric's stories. Thanks to kind friends and family, Eric's room is full of pictures of southern Utah, and he would point to various pictures and tell where it was taken and the highlights of that particular place. It was pretty funny to observe.
We are still waiting for Eric's neutrophils (part of the white blood cell count) to start growing. They are at 0 right now, and as they start to develop they will indicate the stem cell transplant was a success and that his new immune system is starting to develop. Once the neutrophils starts to add up the mouth sores will go away, Eric will feel better, and we will be almost ready to head home. Hooray!
Saturday, September 7, 2013
Long Day
The good news first: The doctor today said that Eric has done "phenomenally well". She also reminded us that starting today his white blood cell count should start to increase and in a few days he would have his current phase behind him.
The bad news is that he is feeling pretty crummy. He has finally started to develop the mouth sores that plague most chemo patients. We had hoped to be among the lucky few who never develop them, but at least Eric's didn't start up until just a few days before they start to diminish because of the rising white blood cell count. Some people have mouth sores for a couple of weeks. Ouch!
Eric's mouth was bothering him so much he didn't even care that his hair finally started falling out today and that this evening he threw up everything he had eaten for the past few hours. Normally either of those two events would have been troubling to him.
The odd thing was that after throwing up, Eric started feeling better and more at peace with the whole process. We know it is temporary. We know that Eric has had fewer side effects than the majority of cancer patients And we know that the bad part is almost over. I think Eric was tired of feeling crummy all day, and after he threw up he just kind of said to himself, "Enough with the feeling crummy. I am just going to mellow out, get some sleep, and I will feel better in the morning."
The bad news is that he is feeling pretty crummy. He has finally started to develop the mouth sores that plague most chemo patients. We had hoped to be among the lucky few who never develop them, but at least Eric's didn't start up until just a few days before they start to diminish because of the rising white blood cell count. Some people have mouth sores for a couple of weeks. Ouch!
Eric's mouth was bothering him so much he didn't even care that his hair finally started falling out today and that this evening he threw up everything he had eaten for the past few hours. Normally either of those two events would have been troubling to him.
The odd thing was that after throwing up, Eric started feeling better and more at peace with the whole process. We know it is temporary. We know that Eric has had fewer side effects than the majority of cancer patients And we know that the bad part is almost over. I think Eric was tired of feeling crummy all day, and after he threw up he just kind of said to himself, "Enough with the feeling crummy. I am just going to mellow out, get some sleep, and I will feel better in the morning."
Tuesday, September 3, 2013
What now?
Eric has been in the hospital for two weeks now, and the minimum length of time we were quoted was four weeks, so we could be halfway done! Or not, since the maximum length of time we were quoted was six weeks. So what is Eric still doing in the hospital if he received the stem cells almost a week ago?
We are now playing a waiting game. There are two things that the doctors are waiting for before Eric can be released. First, the chemotherapy caused his blood counts to crash because it killed his bone marrow. Now the donor stem cells are slowly starting to produce new bone marrow. It will take awhile before the new bone marrow multiplies enough to make sufficient blood cells to keep Eric going. In particular, the doctors worry about his immune system because of the lack of white blood cells. They can give him whole blood to raise his hematocrit, and they can give him platelets, but they can't give him a transfusion of white blood cells. So we have to wait until his immune system is strong enough for Eric to survive in our germ filled home.
The other thing we are waiting for is to see if Eric develops something called Host Versus Graft Disease. This is what happens if the body starts to reject the stem cell transplant. Acute HVGD will show up in the next few weeks. Chronic HVGD can occur anytime in the next few years. HVGD can be mild and easily treated or it can be serious and very difficult to treat. Eric is checked out thoroughly multiple times a day so they can detect the very first symptoms of anything going wrong.
Amazingly, Eric is doing great. He hasn't even lost his hair yet. He is off of all pain medication and they are reducing his anti-nausea medications. So far he hasn't developed any mouth sores, which are common, or rashes, or significant diarrhea. Instead, he is gaining strength and stamina. Eric's goal is to walk 25 minutes, three times a day. It used to take him five laps around the hospital floor to walk for 25 minutes. He has had to up it to six laps to walk 25 minutes, and in the near future it will be seven laps to make 25 minutes.
We have a pretty good routine going. I am able to spend most of my time at the hospital, but still get the things done at home that are needed. Neither of us has gone crazy from the sensory deprivation of a fairly small hospital room. Eric is sick of the hospital food, but since nothing tastes good right now, that is to be expected. I try to sneak in treats to him on a regular basis. Tomorrow I am sneaking in a TV dinner because that is what he is craving at the moment. Wish me luck!
We are now playing a waiting game. There are two things that the doctors are waiting for before Eric can be released. First, the chemotherapy caused his blood counts to crash because it killed his bone marrow. Now the donor stem cells are slowly starting to produce new bone marrow. It will take awhile before the new bone marrow multiplies enough to make sufficient blood cells to keep Eric going. In particular, the doctors worry about his immune system because of the lack of white blood cells. They can give him whole blood to raise his hematocrit, and they can give him platelets, but they can't give him a transfusion of white blood cells. So we have to wait until his immune system is strong enough for Eric to survive in our germ filled home.
The other thing we are waiting for is to see if Eric develops something called Host Versus Graft Disease. This is what happens if the body starts to reject the stem cell transplant. Acute HVGD will show up in the next few weeks. Chronic HVGD can occur anytime in the next few years. HVGD can be mild and easily treated or it can be serious and very difficult to treat. Eric is checked out thoroughly multiple times a day so they can detect the very first symptoms of anything going wrong.
Amazingly, Eric is doing great. He hasn't even lost his hair yet. He is off of all pain medication and they are reducing his anti-nausea medications. So far he hasn't developed any mouth sores, which are common, or rashes, or significant diarrhea. Instead, he is gaining strength and stamina. Eric's goal is to walk 25 minutes, three times a day. It used to take him five laps around the hospital floor to walk for 25 minutes. He has had to up it to six laps to walk 25 minutes, and in the near future it will be seven laps to make 25 minutes.
We have a pretty good routine going. I am able to spend most of my time at the hospital, but still get the things done at home that are needed. Neither of us has gone crazy from the sensory deprivation of a fairly small hospital room. Eric is sick of the hospital food, but since nothing tastes good right now, that is to be expected. I try to sneak in treats to him on a regular basis. Tomorrow I am sneaking in a TV dinner because that is what he is craving at the moment. Wish me luck!
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