Saturday, May 01, 2004
Day + 207 Not much has changed from yesterday. John is in considerable pain as the neupogen begins to help bring John's immune system back. One of last nights nurses thinks she is beginning to hear some breath sounds in the left lung, I will confirm it with respiratory tonight when I return to the hospital.
John had a busy day of visits from family and friends. I was busy working so I am sure once I return to the hospital tonight he will be pooped. I am lucky to have such a big family who is willing to keep John company while I am working.
No lab values today, I will get them when I return to the hospital and report them tomorrow morning. I did get an medical article regarding mucor fungus specifically related to patients who have leukemia. Very interesting that the number of cases have stayed about the same for the last 30 years. Most the time the want to cut the fungus out, which is not an option for John as a small needle biopsy caused a 6 hour nose bleed! Best way to beat this fungus is to get the immune system back up to speed and use the dreaded anti-fungal. I know it has been hard on John's kidneys, but so far they seem to be functioning even if not at top form. The new anti-fungals has a lysome (a fat derivative) in it to help coat the medicine and make it easier to process.
Should find out if the investigational medicine is a go by Monday. Dr. Wolf sent a sample of the fungus from John and I believe they are going to see if the medicine will kill it in a Petri dish. Would be great if they discover a new way to fight fungus through John's experience, then it would give some meaning to this complication.
Some days it is so hard to stay positive and faithful. Today John's computer would not connect to the internet which is very precious and dear to John. And then my car is not starting. Lucky a friend happen to come by a visit John (THANK YOU CRAIG!!!) and he managed to unmuttle the problem, and for me My sister Laura has a spare car to loan for a couple weeks so I don't even have to deal with my car problem until John is better (Laura my sweet atheist sister is a constant angel in my life, often an answer to my prayer, go figure). So on one hand when I question why God lets these things happen, usually within a couple hours all is fixed. It begs the question what came first the chicken or the egg, in other words the problems are arbitrary universal events and the solutions are the blessings from God, or the universe, or what ever one believes.
John had a busy day of visits from family and friends. I was busy working so I am sure once I return to the hospital tonight he will be pooped. I am lucky to have such a big family who is willing to keep John company while I am working.
No lab values today, I will get them when I return to the hospital and report them tomorrow morning. I did get an medical article regarding mucor fungus specifically related to patients who have leukemia. Very interesting that the number of cases have stayed about the same for the last 30 years. Most the time the want to cut the fungus out, which is not an option for John as a small needle biopsy caused a 6 hour nose bleed! Best way to beat this fungus is to get the immune system back up to speed and use the dreaded anti-fungal. I know it has been hard on John's kidneys, but so far they seem to be functioning even if not at top form. The new anti-fungals has a lysome (a fat derivative) in it to help coat the medicine and make it easier to process.
Should find out if the investigational medicine is a go by Monday. Dr. Wolf sent a sample of the fungus from John and I believe they are going to see if the medicine will kill it in a Petri dish. Would be great if they discover a new way to fight fungus through John's experience, then it would give some meaning to this complication.
Some days it is so hard to stay positive and faithful. Today John's computer would not connect to the internet which is very precious and dear to John. And then my car is not starting. Lucky a friend happen to come by a visit John (THANK YOU CRAIG!!!) and he managed to unmuttle the problem, and for me My sister Laura has a spare car to loan for a couple weeks so I don't even have to deal with my car problem until John is better (Laura my sweet atheist sister is a constant angel in my life, often an answer to my prayer, go figure). So on one hand when I question why God lets these things happen, usually within a couple hours all is fixed. It begs the question what came first the chicken or the egg, in other words the problems are arbitrary universal events and the solutions are the blessings from God, or the universe, or what ever one believes.
Friday, April 30, 2004
Day + 206 Finally a minute to write a decent blog report. It has been really difficult mostly because John is on the computer here at the hospital and I have had very little time at home. John's bloody nose is under control this morning and he had a really restful night. I think he actually would of slept through the night if he wasn't pestered with vital signs, platelets and blood tests. Speaking of blood tests I have not gotten hold of the results, but if anything was out of the ordinary I would have been informed by now.
As far as the plan in the near future I hear from John that Dr. Wolf has decided to infuse the donor cells next Tuesday as planned. It may open the door to graft vs. host, but it may be the solution to curing the fungal infection. Anybody who has any information about Mucor (sounds like an anime villain) please feel free to e-mail me.
Dr. Wolf just stopped by and says things are still a bit up in the air. He is saying John's bone marrow not only does not have any leukemia, but "no cells at all". Does this mean it is dire, only if another opportunistic infection comes John's way. In the mean time they have begun giving John Neupogen to hopefully stimulate white cell growth. As far as his chest xrays go they have stayed the same, not better, however I think this is most important, they are not worse. John has an amazing ability to continue to forge ahead. I am not sure I have said this in previous blogs, but every single doctor has said that the person they see and the person on paper are not the same. This tells us that John's fortitude is such that he is a survivor, and will continue to survive and beat this infection. Just ask Uncle Bob who helped John through the bloody nose crisis and witnessed first hand the lack of complaint John has to offer.
Dr Tsang John's cardiologist stopped by and says John's blood pressure is finally stable too.
A note of sincere thanks to John Lieberman for his generous donation of blood and time in honor of John. I know that the blood bank does not specifically take blood offered and bring it to John, however it is more like a karmic pay back. When someone takes the time to donate blood and platelets with a specific patient in mind it not only helps resupply the blood John has used, but helps other people in need of blood products. Anyone else with time and energy to donate it is much appreciate. John will have another unit of blood today since he lost a bit last night and the 5 infusions of platelets have made it so his platelet count it at around 87.
Please keep praying for John to have strength to fight and at the end of day if you have an ounce of energy left going to bed, please send it John's way. After all you may get a better nights sleep.
As far as the plan in the near future I hear from John that Dr. Wolf has decided to infuse the donor cells next Tuesday as planned. It may open the door to graft vs. host, but it may be the solution to curing the fungal infection. Anybody who has any information about Mucor (sounds like an anime villain) please feel free to e-mail me.
Dr. Wolf just stopped by and says things are still a bit up in the air. He is saying John's bone marrow not only does not have any leukemia, but "no cells at all". Does this mean it is dire, only if another opportunistic infection comes John's way. In the mean time they have begun giving John Neupogen to hopefully stimulate white cell growth. As far as his chest xrays go they have stayed the same, not better, however I think this is most important, they are not worse. John has an amazing ability to continue to forge ahead. I am not sure I have said this in previous blogs, but every single doctor has said that the person they see and the person on paper are not the same. This tells us that John's fortitude is such that he is a survivor, and will continue to survive and beat this infection. Just ask Uncle Bob who helped John through the bloody nose crisis and witnessed first hand the lack of complaint John has to offer.
Dr Tsang John's cardiologist stopped by and says John's blood pressure is finally stable too.
A note of sincere thanks to John Lieberman for his generous donation of blood and time in honor of John. I know that the blood bank does not specifically take blood offered and bring it to John, however it is more like a karmic pay back. When someone takes the time to donate blood and platelets with a specific patient in mind it not only helps resupply the blood John has used, but helps other people in need of blood products. Anyone else with time and energy to donate it is much appreciate. John will have another unit of blood today since he lost a bit last night and the 5 infusions of platelets have made it so his platelet count it at around 87.
Please keep praying for John to have strength to fight and at the end of day if you have an ounce of energy left going to bed, please send it John's way. After all you may get a better nights sleep.
Day 205, well really Day +206 First of all the good news. Dr. Wolf said no leukemia found in the bone marrow biopsy. He thinks it is best to infuse the donor cells next Tuesday as planned. He hopes the immune system will destroy the fungal pneumonia.
Today when I returned to the hospital John was in the middle of quite a dilemma when the ear nose and throat doctor who came by to biopsy John's sinuses to check for mucor fungus and it started the absolutely worst bloody nose I have ever seen. It took two tries at packing it, 5 bags of platelets and a unit of blood to get it in control again. Lucky for John Uncle Bob was in town to help and really went the extra mile.
It is now 12:30 a.m. and I need to get to sleep, John is finally resting comfortably.
Today when I returned to the hospital John was in the middle of quite a dilemma when the ear nose and throat doctor who came by to biopsy John's sinuses to check for mucor fungus and it started the absolutely worst bloody nose I have ever seen. It took two tries at packing it, 5 bags of platelets and a unit of blood to get it in control again. Lucky for John Uncle Bob was in town to help and really went the extra mile.
It is now 12:30 a.m. and I need to get to sleep, John is finally resting comfortably.
Wednesday, April 28, 2004
Day + 204 Dr. Wolf came by this morning and did John's bone marrow biopsy and we will know the results tomorrow. Today is Cat Scan day to make sure there is no sign of Mucor in John's sinuses or brain. Dr. Wolf is in touch with a fungus expert at Stanford and will find out if there is any investigational studies to fight this fungus.
Dr. Wolf feels that because of John's age and history of being able to continually conquer what obstacles are put in front of him there is no reason to start crying about John's demise.
Labs today showed some improvement including a couple neutrophils that are not leukemia. His hemoglobin (9.4) is standard for this stage of treatment and his platelets are about 48. His bilirubin is down a bit so he is not as yellow and his kidney functions are about the same.
As far as donor infusion of new cells it is being postponed until they can cure John of the fungal infection. The hope is if John is confirmed in remission they will let his cells grow back and fight the infection. Then once he is strong again they will talk about infusing more cells.
As soon as John or I hear about the BMB results we will post another update.
Dr. Wolf feels that because of John's age and history of being able to continually conquer what obstacles are put in front of him there is no reason to start crying about John's demise.
Labs today showed some improvement including a couple neutrophils that are not leukemia. His hemoglobin (9.4) is standard for this stage of treatment and his platelets are about 48. His bilirubin is down a bit so he is not as yellow and his kidney functions are about the same.
As far as donor infusion of new cells it is being postponed until they can cure John of the fungal infection. The hope is if John is confirmed in remission they will let his cells grow back and fight the infection. Then once he is strong again they will talk about infusing more cells.
As soon as John or I hear about the BMB results we will post another update.
Tuesday, April 27, 2004
Day +203 Finally John is back on 4 NE. He has just finished taking a shower and feels like a new man. Not much to say today, Dr. Wolf arrived safely back and will do the bone marrow biopsy tomorrow instead of today because his plane was delayed and he had a bone marrow harvest this morning and had tons of patients he needed to see.
We did find out that John has tested positive for a rare fungus infection in his lungs. It is called Mucor and apparently it is hard to treat. Grethen one of the original BMT nurses with over 20 years experience has not ever seen a patient with this fungus. Best way to treat it is to get a healthy immune system to fight the infection. Currently they are treating it with a kidney hurting medication called Anfotericin B. The infection disease doc wants to increase the dose, but we are hoping Dr. Wolf will find an experimental trial that will work and not harm John permanently. Today we are holding off the higher dose until we know more about the risks and John's options.
Should have the results of the bone marrow biopsy by Thursday and develop a plan of attack against this fungus.
We did find out that John has tested positive for a rare fungus infection in his lungs. It is called Mucor and apparently it is hard to treat. Grethen one of the original BMT nurses with over 20 years experience has not ever seen a patient with this fungus. Best way to treat it is to get a healthy immune system to fight the infection. Currently they are treating it with a kidney hurting medication called Anfotericin B. The infection disease doc wants to increase the dose, but we are hoping Dr. Wolf will find an experimental trial that will work and not harm John permanently. Today we are holding off the higher dose until we know more about the risks and John's options.
Should have the results of the bone marrow biopsy by Thursday and develop a plan of attack against this fungus.
Monday, April 26, 2004
Day 202 I think...John is currently anxiously awaiting Dr. Wolf's arrival tomorrow morning so the big boss can spring him from ICU. As John says it one of the doctors has a knot in his undies and is not letting him leave the unit. I think that if anything happens to John until Dr.
Wolf comes back the entire 4 NE staff and ICU staff and the cardiologist and the pulminologists will be in such big trouble...so John will suffer one last night in ICU.
Today's tests again are the same boring neutopenic fair. WBC's below .5, hemoglobin 10.0 and platelets at 53 with the help of twice a day infusions. John's liver is still working hard to process all the drugs and he has a bit of the high "yeller" of someone with jaundice.
Will try to post earlier tomorrow after John moves back to 4 NE his home away from home.
Wolf comes back the entire 4 NE staff and ICU staff and the cardiologist and the pulminologists will be in such big trouble...so John will suffer one last night in ICU.
Today's tests again are the same boring neutopenic fair. WBC's below .5, hemoglobin 10.0 and platelets at 53 with the help of twice a day infusions. John's liver is still working hard to process all the drugs and he has a bit of the high "yeller" of someone with jaundice.
Will try to post earlier tomorrow after John moves back to 4 NE his home away from home.
Sunday, April 25, 2004
Day 200 and 201 The last few days have been a little intense for John here at Alta Bates. First of all his left lung is showing little or no improvement in deciding to work again. Secondly fluid has begun to build around John's heart and it is making it even more difficult to breathe. One of the results of the heart having fluid around it (officially called a pericardial infusion) is when John stands up his heart races in a sinus tachycardia because the fluid does not allow the heart to expand. The other thing that a poorly beating heart leads to is Barney Rubble feet. John’s feet and ankles are very swollen and it is painful for him to walk, laborious to get in and out of bed. What you might ask is the end result of all these problems piled on top of the fungal infection, pneumonia and leukemia…the doctors decided collectively to move John to the ICU for a few days in order to monitor him closer. Try not to get too excited by this news, because in fact John is much more awake than he has been in the last few days and in less pain (it has moved from his head to under his left rib). This morning the echo cardiogram was repeated and we are waiting for those results to tell us if the medication they are giving John is helping of if they will need to go in and make a small window in the pericardium to drain the fluid. From what I can see on constant monitoring John will avoid this invasive procedure and be back at 4 NE before we know it.
John’s labs continue to be about the same, no white cells, low platelets and hemoglobin. His bilirubin (a test that indicated liver function) is up to 3.8 this morning, but mostly the rise is due to all the medications John’s liver is trying to process. One of the deciding factors of sending John to the unit was his “DIC” panel came back pretty high. DIC is a measurement of John’s clotting factors, and John’s “bleeding time” is too long. Most likely this is also nothing but a blip they will never figure out, but with the DIC being high it put the nurses on 4 NE into a worry mode and wanted John watched more closely than he can there. Lots of tears in the house and John was pretty angry (probably why he woke up and is getting better), have to say though that Robert John’s ICU nurse won John over pretty quickly.
Right now John is anxiously awaiting Dr. Wolf’s return so he can “tell on” everyone”. Actually he is doing much better and we hope he returns to 4NE by tomorrow.
Have to thank Marlene again for getting the word out to have people go out and replace the blood and platelets John is using.
Will do my best to post tomorrow.
PS Dr. Bails came in with the echocardiogram results and he says they are about the same, but they are not worse which is good since it means he is not bleeding into the pericardium with the long bleeding time. Dr. Bails also made it seem like John if he holds steady will get to go back down stairs.
John’s labs continue to be about the same, no white cells, low platelets and hemoglobin. His bilirubin (a test that indicated liver function) is up to 3.8 this morning, but mostly the rise is due to all the medications John’s liver is trying to process. One of the deciding factors of sending John to the unit was his “DIC” panel came back pretty high. DIC is a measurement of John’s clotting factors, and John’s “bleeding time” is too long. Most likely this is also nothing but a blip they will never figure out, but with the DIC being high it put the nurses on 4 NE into a worry mode and wanted John watched more closely than he can there. Lots of tears in the house and John was pretty angry (probably why he woke up and is getting better), have to say though that Robert John’s ICU nurse won John over pretty quickly.
Right now John is anxiously awaiting Dr. Wolf’s return so he can “tell on” everyone”. Actually he is doing much better and we hope he returns to 4NE by tomorrow.
Have to thank Marlene again for getting the word out to have people go out and replace the blood and platelets John is using.
Will do my best to post tomorrow.
PS Dr. Bails came in with the echocardiogram results and he says they are about the same, but they are not worse which is good since it means he is not bleeding into the pericardium with the long bleeding time. Dr. Bails also made it seem like John if he holds steady will get to go back down stairs.
