After a painfully long bone marrow transplant clinic visit last week, we were blessed to have a mercifully short visit today. Short visits really improve our mood, even if we were to get bad news. But such was not the case with this visit--it was all good news!
Eric's weight continues to climb, his complexion continues to even out, and his blood work continues to improve. Neutrophils, white blood cells and platelets are up. Red blood cells are about the same. They would have given Eric a blood transfusion today if we had pressed for one, but since that would have added four hours to our short and sweet visit, we declined. Since Eric continues to go for long walks every morning even though he is severely anemic, we all agreed that it was better to take a "wait and see" approach on any more transfusions unless his numbers drop significantly.
I am sorry for you, dear reader, that the last few blogs have been boring. But for myself, I love being able to check off another week on the road to recovery without any excitement or drama. Hooray for boring!
Tuesday, October 15, 2013
Wednesday, October 9, 2013
Long lackluster day
I wish I had something amazing to report, but if you want amazing you will have to read someone else's blog. At Eric's check up today we found out that his neutrophils were the exact same as they were last week and his platelets and hemactocrit had both dropped. That was a bit depressing and meant we had to spend an extra four hours at the hospital so that Eric could have a blood transfusion. He only needed one unit of blood, so we really can't complain too much.
On the positive side, Eric's skin tone is almost back to normal after the discoloration from the chemotherapy. Eric's weight is up and his overall white blood count was up. We also both got a lot of reading done today!
We will continue to have weekly appointments for the foreseeable future AND today we made the appointment for Eric's 100 day check up in December. Our coordinator told us that at the 100 day check up they do tests that let them know how much of Eric's blood is his and how much is Debbie's. I don't know how it all works, but it sounds pretty intriguing. After all we have been through, we are expecting some pretty amazing super powers!
On the positive side, Eric's skin tone is almost back to normal after the discoloration from the chemotherapy. Eric's weight is up and his overall white blood count was up. We also both got a lot of reading done today!
We will continue to have weekly appointments for the foreseeable future AND today we made the appointment for Eric's 100 day check up in December. Our coordinator told us that at the 100 day check up they do tests that let them know how much of Eric's blood is his and how much is Debbie's. I don't know how it all works, but it sounds pretty intriguing. After all we have been through, we are expecting some pretty amazing super powers!
Wednesday, October 2, 2013
Headed in the right direction
Eric had his weekly doctor's appointment this morning. Things are looking really good. His neutrophils are up to 3.1, which is amazing. Other components of Eric's blood work are also improving but his platelets and red blood cells are staying the same. That leaves him tired and prone to bleeding, but fortunately he still gets out and walks every day and is building up his strength.
So the prognosis for the long term is good. Short term, we need to be patient because it takes time for bone marrow to build back up to normal. Having survived five weeks in a hospital room without going crazy, we hope it will be easier to be patient now that we are home and have a little bit more freedom of movement and a more extensive menu.
So the prognosis for the long term is good. Short term, we need to be patient because it takes time for bone marrow to build back up to normal. Having survived five weeks in a hospital room without going crazy, we hope it will be easier to be patient now that we are home and have a little bit more freedom of movement and a more extensive menu.
Thursday, September 26, 2013
Eric is making all the other cancer patients look bad
When we checked out of the hospital on Monday, the Bone Marrow Transplant clinic set up lab draw appointments for every day this week. The schedule was a tad depressing, having to go back to LDS hospital every single day, but at least Eric was out of the hospital.
Tuesday Eric's blood work was so good (neutrophils up to .7) they decided we could skip coming to the hospital on Wednesday and just show up for the lab draw and check up on Thursday.
Today Eric's blood was so amazing (his neutrophils are up to 1!) the doctor decided we could cancel all of the daily lab draws and just come back next Wednesday for a lab draw and check up. What great news!
Unless something dramatic or exciting happens (and I hate drama and excitement!) I probably won't update the blog until after our appointment next Wednesday, so I thought I would just give a few insights into what our life is like now that we are home.
We go for a half hour walk each morning, and move much faster than we did before entering the hospital. Eric doesn't have to wear his hepa filter outdoors unless it is windy or he might encounter groups of people. So far, the only people outside during our walk times have been kids going to the junior high bus stop, so I don't think we have to worry too much about crowds of people at 7:00 a.m. Eric also has to be careful to avoid the sun. Exposure to more than minimal sunlight can cause Graft Versus Host Disease to develop, so Eric is wearing a cap with long flaps that hang down to cover his ears and back. So if you see a suspicious looking character with a weird mask and cap in our neighborhood, please don't call the police. It is just Eric out for a walk.
Food is not as exciting as it once was for Eric. Strong flavors and spicy food are unpleasant and will continue to be unpleasant until his taste buds get back to normal. Day to day Eric has noticed that things are less "off" than they used to be. Water only tastes mildly disgusting now, which makes it easier for Eric to get the amount of liquids he needs to protect his various organs that are stressed by either the chemo he had a month ago or the meds he is on now. He is already tired of me cheering him on to eat and drink more, but he is starting to slowly put on weight.
All of Eric's medications are now oral except for his daily dose of magnesium. Each afternoon I have to clean his central line, flush it out, and attach a softball sized plastic ball filled with magnesium to the central line. Four hours later the plastic ball has deflated as the magnesium has flowed into Eric's bloodstream through the central line. I then clean it, flush it, put in heparin (which keeps it open so it doesn't clot up) and cap it off. Great fun and pretty amazing!
After five weeks in a hospital room, Eric is enjoying having an entire house to wander through, his own recliner, a TV with more options, lots of books to read, food that doesn't have to ordered from a limited menu cafeteria 45 minutes before he wants it, easier access to the internet, and his own bed.
As far as visitors go, any adult that is healthy and hasn't been exposed to someone who isn't healthy can come visit. Just don't expect any hugs or handshakes. Half of our family room is Eric's half and the other half is for visitors, and we don't mix it up. Eric would love calls and visits because he has a lot more energy and focus than he did before his stem cell transplant. I would say he is back to about where he was in the middle of June.
What do we anticipate in the future? It will take a long time for Eric's body to recover from the cancer and the chemotherapy. Debbie's stem cells are working hard, but it will take many, many months before Eric's immune system is fully functioning. It will also be many, many months until he is back to full strength. From what we have heard and read, we will feel very fortunate if Eric's immune system and body are full strength in a year. We have been warned that it can take two to five years. And, the doctors warn of detours and side effects many recovering stem cell recipients experience. Of course, as we all know, Eric is very determined and will always try to be ahead of the curve. You just can't keep him down!
Tuesday Eric's blood work was so good (neutrophils up to .7) they decided we could skip coming to the hospital on Wednesday and just show up for the lab draw and check up on Thursday.
Today Eric's blood was so amazing (his neutrophils are up to 1!) the doctor decided we could cancel all of the daily lab draws and just come back next Wednesday for a lab draw and check up. What great news!
Unless something dramatic or exciting happens (and I hate drama and excitement!) I probably won't update the blog until after our appointment next Wednesday, so I thought I would just give a few insights into what our life is like now that we are home.
We go for a half hour walk each morning, and move much faster than we did before entering the hospital. Eric doesn't have to wear his hepa filter outdoors unless it is windy or he might encounter groups of people. So far, the only people outside during our walk times have been kids going to the junior high bus stop, so I don't think we have to worry too much about crowds of people at 7:00 a.m. Eric also has to be careful to avoid the sun. Exposure to more than minimal sunlight can cause Graft Versus Host Disease to develop, so Eric is wearing a cap with long flaps that hang down to cover his ears and back. So if you see a suspicious looking character with a weird mask and cap in our neighborhood, please don't call the police. It is just Eric out for a walk.
Food is not as exciting as it once was for Eric. Strong flavors and spicy food are unpleasant and will continue to be unpleasant until his taste buds get back to normal. Day to day Eric has noticed that things are less "off" than they used to be. Water only tastes mildly disgusting now, which makes it easier for Eric to get the amount of liquids he needs to protect his various organs that are stressed by either the chemo he had a month ago or the meds he is on now. He is already tired of me cheering him on to eat and drink more, but he is starting to slowly put on weight.
All of Eric's medications are now oral except for his daily dose of magnesium. Each afternoon I have to clean his central line, flush it out, and attach a softball sized plastic ball filled with magnesium to the central line. Four hours later the plastic ball has deflated as the magnesium has flowed into Eric's bloodstream through the central line. I then clean it, flush it, put in heparin (which keeps it open so it doesn't clot up) and cap it off. Great fun and pretty amazing!
After five weeks in a hospital room, Eric is enjoying having an entire house to wander through, his own recliner, a TV with more options, lots of books to read, food that doesn't have to ordered from a limited menu cafeteria 45 minutes before he wants it, easier access to the internet, and his own bed.
As far as visitors go, any adult that is healthy and hasn't been exposed to someone who isn't healthy can come visit. Just don't expect any hugs or handshakes. Half of our family room is Eric's half and the other half is for visitors, and we don't mix it up. Eric would love calls and visits because he has a lot more energy and focus than he did before his stem cell transplant. I would say he is back to about where he was in the middle of June.
What do we anticipate in the future? It will take a long time for Eric's body to recover from the cancer and the chemotherapy. Debbie's stem cells are working hard, but it will take many, many months before Eric's immune system is fully functioning. It will also be many, many months until he is back to full strength. From what we have heard and read, we will feel very fortunate if Eric's immune system and body are full strength in a year. We have been warned that it can take two to five years. And, the doctors warn of detours and side effects many recovering stem cell recipients experience. Of course, as we all know, Eric is very determined and will always try to be ahead of the curve. You just can't keep him down!
Tuesday, September 24, 2013
What a difference five weeks makes
Monday, August 19, Eric was admitted to LDS hospital to prepare for and receive a bone marrow transplant in hopes of curing his bone marrow cancer.
Monday, September 23, five weeks later, Eric was discharged from LDS hospital. During those weeks he had four days of high dosage chemotherapy to kill his bone marrow and the cancer. On August 28 he received the bone marrow transplant, which consisted of an IV drip of stem cells harvested from his sister Debbie's blood.
As of this Monday, Eric is 30 pounds lighter and looking slim and trim. His appetite is increasing even though his taste buds are still messed up from the chemo (a bitter after taste for most foods). Eric is pain free and nausea free. And best of all, now that Eric is home he can sleep in peace without worrying that anyone will interrupt to administer meds, take vitals or draw blood for labs!
Now we just wait to see what happens next. The doctor warned us that it is not unusual to be readmitted to the hospital a few times during the healing process in order to fight the infections that are bound to occur. Graft Versus Host Disease could also occur at any time, so we have carefully monitor anything unusual like changes in skin, increases of temperature, and change in bodily functions. We will be returning to the Bone Marrow Transplant Clinic numerous times so that Eric's blood work can be checked. And every time his blood is checked we get a report so that we can watch as Debbie's awesome stem cells help Eric to develop new bone marrow that is cancer free. Today his neutrophils are up to .7, prompting the doctors to call off tomorrow's scheduled blood draw. Eric's platelets and red blood cells are doing so well that he may not have to receive any more transfusions! It is a miracle!
From Eric: I can't begin to tell you how amazing and humbling it is to be out of the confines of a hospital room and back in my own home. It is an immense blessing! I am confident that, absent the encouragement, kindness and prayers of so many, things would not have progressed to this point in such a positive way. Please accept my love and gratitude for every good wish, loving deed and word of hope and faith. I am still somewhat isolated and confined: stay in the house is the rule, but walks in the neighborhood, drives, visits from healthy adults and activities that do not expose me unduly to potential infection are all permitted. Thus, I would love to hear from or see any or all of you. Rest assured that in every way I can I have attempted to return your love and put each of you in my thoughts and prayers.
Monday, September 23, five weeks later, Eric was discharged from LDS hospital. During those weeks he had four days of high dosage chemotherapy to kill his bone marrow and the cancer. On August 28 he received the bone marrow transplant, which consisted of an IV drip of stem cells harvested from his sister Debbie's blood.
As of this Monday, Eric is 30 pounds lighter and looking slim and trim. His appetite is increasing even though his taste buds are still messed up from the chemo (a bitter after taste for most foods). Eric is pain free and nausea free. And best of all, now that Eric is home he can sleep in peace without worrying that anyone will interrupt to administer meds, take vitals or draw blood for labs!
Now we just wait to see what happens next. The doctor warned us that it is not unusual to be readmitted to the hospital a few times during the healing process in order to fight the infections that are bound to occur. Graft Versus Host Disease could also occur at any time, so we have carefully monitor anything unusual like changes in skin, increases of temperature, and change in bodily functions. We will be returning to the Bone Marrow Transplant Clinic numerous times so that Eric's blood work can be checked. And every time his blood is checked we get a report so that we can watch as Debbie's awesome stem cells help Eric to develop new bone marrow that is cancer free. Today his neutrophils are up to .7, prompting the doctors to call off tomorrow's scheduled blood draw. Eric's platelets and red blood cells are doing so well that he may not have to receive any more transfusions! It is a miracle!
From Eric: I can't begin to tell you how amazing and humbling it is to be out of the confines of a hospital room and back in my own home. It is an immense blessing! I am confident that, absent the encouragement, kindness and prayers of so many, things would not have progressed to this point in such a positive way. Please accept my love and gratitude for every good wish, loving deed and word of hope and faith. I am still somewhat isolated and confined: stay in the house is the rule, but walks in the neighborhood, drives, visits from healthy adults and activities that do not expose me unduly to potential infection are all permitted. Thus, I would love to hear from or see any or all of you. Rest assured that in every way I can I have attempted to return your love and put each of you in my thoughts and prayers.
Saturday, September 21, 2013
Quick update
Eric's neutrophils are up to .5 so we are still scheduled for discharge from the hospital Monday. Can't wait!
Friday, September 20, 2013
The Good, the Bad, and the Ugly
The Good--Eric is a free man today! At 1:00 p.m. he was officially unhooked from his Siamese twin the IV pole. They have been constant companions for almost five weeks. The IV pole has been his faithful sidekick through this whole amazing process. It has been much more loyal to Eric than I have been. It has been there for every walk, every shower, every nap, every meal, morning, noon and night. The IV pole's constancy through the good times and the bad puts me to shame. I can never hope to compete with its five week attachment to Eric.
The Bad--After a week of climbing ever higher, Eric's neutrophils plunged from yesterday's high of .7 to .4 this morning. Why are neutrophils so fickle? Why can't they have the loyalty and devotion of an IV pole?
The Ugly--Two words: hospital food. To elaborate with six words: Five straight weeks of hospital food!
The Bad--After a week of climbing ever higher, Eric's neutrophils plunged from yesterday's high of .7 to .4 this morning. Why are neutrophils so fickle? Why can't they have the loyalty and devotion of an IV pole?
The Ugly--Two words: hospital food. To elaborate with six words: Five straight weeks of hospital food!
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