Tuesday, May 04, 2004
Day + 210 As I have always said the world of leukemia often takes a quick, cruel turn. Shortly after I reported that John’s kidneys began to fail it was an indication of his physical body not being able to fight the ravages of the disease. I am sure one day, I don’t know when, I will be able to post the nitty gritty details. I wish I could say he gave in and quietly went into a coma, giving enough time to gather all the family, but we all know John he was a fighter and he fought until his last breath as his precious spirit really wanted to stay here on earth. Unfortunately his body just couldn’t handle the pressures of this disease.
Last night Dr. Wolf and I discussed how fair would it be to continue to ask his body to be put through this process. We decided we could deal with the kidney stuff, and we could deal with the heart stuff since Dr. Wolf and I knew John’s young body would repair itself given a chance…What we didn’t know is the mucor fungus would not give John the break he needed to recover from the latest physical blow.
I have to be faithful that John is now whole body, whole spirit in a place where he is happy. I can only hope that John will send me a sign that he is not mad we couldn’t save him. Dr. Wolf said it was right to let him go…I really believe that we didn’t have any choice. There was no decision to be made here…it was made for us…guess that was a gift…
Last night Dr. Wolf and I discussed how fair would it be to continue to ask his body to be put through this process. We decided we could deal with the kidney stuff, and we could deal with the heart stuff since Dr. Wolf and I knew John’s young body would repair itself given a chance…What we didn’t know is the mucor fungus would not give John the break he needed to recover from the latest physical blow.
I have to be faithful that John is now whole body, whole spirit in a place where he is happy. I can only hope that John will send me a sign that he is not mad we couldn’t save him. Dr. Wolf said it was right to let him go…I really believe that we didn’t have any choice. There was no decision to be made here…it was made for us…guess that was a gift…
Monday, May 03, 2004
Day + 209 PART TWO It only takes the course of a couple hours for one with leukemia health to improve or fail. Today John's health took a turn towards the serious at least until it decides to turn again for the better. This afternoon John's kidneys decided they have had just too much and shut down. Dr. Doud, now John's official renal doctor ordered a second catheter and emergency dialysis.
During the last 24 hours John has increasingly more trouble breathing, much more pain and his body has gotten quite swollen with fluid. Dialysis will be for now daily everyday until they can get all the extra fluid off his lungs and body. They cannot take it off all at once because it would be too much of a shock to his fragile system so it will happen slowly. Will this be permanent? No one knows for sure. It could be temporary...we will continue to hope for the best...as all of us have learned over the last few years John is a fighter.
During the last 24 hours John has increasingly more trouble breathing, much more pain and his body has gotten quite swollen with fluid. Dialysis will be for now daily everyday until they can get all the extra fluid off his lungs and body. They cannot take it off all at once because it would be too much of a shock to his fragile system so it will happen slowly. Will this be permanent? No one knows for sure. It could be temporary...we will continue to hope for the best...as all of us have learned over the last few years John is a fighter.
Day + 209 Last night was quite an adventure for John. The anti-fungal medicine is causing John's creatine to rise and this morning it is up to 3.0. This is pretty high in the world of trying to save John’s kidneys. Dr. Wolf is has asked a renal doctor to come take a look at John today. The result of having a high creatine is the body holds onto the liquids I think in a natural effort to keep the body hydrated so it will keep the kidneys moist. What problem this leads to is John is holding onto almost all the hydration fluids, water, root beer any liquid his body encounters. The results: a 20 pound weight gain in two days! John can hardly move comfortably with this extra weight especially since he already was holding onto an extra twenty pound. The plan today is to load John up on an anti-diuretic called Lasix and they are mixing it with the protein albumen to make the fluid come off faster. Once the fluid is off, John should be able to breathe again. Right now he is on 24/7 oxygen and when he moves around he gets quite short of breath.
The good news is that the echocardiogram shows a slight reduction in the fluid around John's heart. The chest x-ray says his lungs are the same and not worse. And the donor infusion is still a go for tomorrow. Also now that they are trying to aggressively get the fluid from John's body he is finally able to sleep. I would say in the last 48 hours John has only gotten the equivalent of 5 hours sleep. One of the differences between this admission and the others is because of the steroids John has been more awake which has not been as great as John usually will sleep through most of the pain and physical garbage his body is asked to endure. The other good thing for today is that we have Gretchen taking care of John this morning. She just has a special way of taking care of the both of us.
Another good think is Dr. Kerbabitz came and took the packing from John’s nose and it has stopped bleeding. Nice thing is that now John doesn’t need an oxygen mask, but just a nose canella and it makes it easier to hear him when he whispers. Dr. Lewis the weekend oncologist thinks the fungus may have caused some nerve damage to his vocal cords. Hopefully it is just another thing to add to the temporary set back list as this is sometimes what it is like to be neutropenic (having no white cells, therefore no immune system).
Labs, which I know you are breathlessly waiting for: WBC= none still; hemoglobin = 8.4 (unit of blood today); platelets = 39 after on unit and another is being infused right now; bilirubin = 1.8 (way down and almost normal) and as I said before the creatine is up so that makes the potassium (5.3) up too. Dr. Wolf is concerned, but still feels in charge. Mostly if we can get John to have 8 hours or more of solid sleep he will fair much better with all the junk that is going on with his body.
The good news is that the echocardiogram shows a slight reduction in the fluid around John's heart. The chest x-ray says his lungs are the same and not worse. And the donor infusion is still a go for tomorrow. Also now that they are trying to aggressively get the fluid from John's body he is finally able to sleep. I would say in the last 48 hours John has only gotten the equivalent of 5 hours sleep. One of the differences between this admission and the others is because of the steroids John has been more awake which has not been as great as John usually will sleep through most of the pain and physical garbage his body is asked to endure. The other good thing for today is that we have Gretchen taking care of John this morning. She just has a special way of taking care of the both of us.
Another good think is Dr. Kerbabitz came and took the packing from John’s nose and it has stopped bleeding. Nice thing is that now John doesn’t need an oxygen mask, but just a nose canella and it makes it easier to hear him when he whispers. Dr. Lewis the weekend oncologist thinks the fungus may have caused some nerve damage to his vocal cords. Hopefully it is just another thing to add to the temporary set back list as this is sometimes what it is like to be neutropenic (having no white cells, therefore no immune system).
Labs, which I know you are breathlessly waiting for: WBC= none still; hemoglobin = 8.4 (unit of blood today); platelets = 39 after on unit and another is being infused right now; bilirubin = 1.8 (way down and almost normal) and as I said before the creatine is up so that makes the potassium (5.3) up too. Dr. Wolf is concerned, but still feels in charge. Mostly if we can get John to have 8 hours or more of solid sleep he will fair much better with all the junk that is going on with his body.
Sunday, May 02, 2004
Day + 208 or at least I think it is 208. Hard to know since one day seems to meld into another. Actually John is staying about the same, same blood test results, no white cells, low hemoglobin (9.0 yesterday and 9.5 today after another 2 units of blood) and platelets at 39. John's chemistry panel is about the same too, the creatine (a measure of kidney function) it high at 2.8 and his bilirubin (liver function) is again at about 2.8 same as yesterday. The good news is that he is not getting worse. It does seem like such a long process having one thing after another. First we get rid of the migraine and now it is horrible back and shoulder pain with stomach cramps to boot. Sometimes he is laying sound asleep and he gets these horrible spasms that he has to sit straight up in bed to deal with. We rub his back, but at times the friction hurts him too. We are very happy for the invention of themacares which are these charcoal activated heat pads that last about 12 hours and give constant heat relief.
Some of the pain is from the neupogen John is getting to encourage white cell recovery, but it reminds me of donor Dr. Jim and how he must be having pain as he began his neupogen shots Friday in preparation to donate again for John. I cannot wait to meet this man as his generosity to inconvenience himself to help make John well will never be repaid by the thank you notes we send. I do believe once Dr. Jim meets us in person our expressions of gratefulness will truly convey how we feel.
John continues to whisper as his voice has still not returned since the first bronchscopy which is very hard with my blow dryer ruined ears. John wastes often precious energy having to repeat himself. Worst part is that his cough sounds like he is saying "Mom" which constantly leads me to bugging him with a Ralph of "What?".
Today is Nascar day so we hope it is on local television as they have no cable here at Alta Bates. Am thinking of contacting Comcast and seeing why they do not help the hospital and give free cable in exchange for a big advertisement on the television frame that says something like, good TV courtesy of Comcast (or direct TV).
Some of the pain is from the neupogen John is getting to encourage white cell recovery, but it reminds me of donor Dr. Jim and how he must be having pain as he began his neupogen shots Friday in preparation to donate again for John. I cannot wait to meet this man as his generosity to inconvenience himself to help make John well will never be repaid by the thank you notes we send. I do believe once Dr. Jim meets us in person our expressions of gratefulness will truly convey how we feel.
John continues to whisper as his voice has still not returned since the first bronchscopy which is very hard with my blow dryer ruined ears. John wastes often precious energy having to repeat himself. Worst part is that his cough sounds like he is saying "Mom" which constantly leads me to bugging him with a Ralph of "What?".
Today is Nascar day so we hope it is on local television as they have no cable here at Alta Bates. Am thinking of contacting Comcast and seeing why they do not help the hospital and give free cable in exchange for a big advertisement on the television frame that says something like, good TV courtesy of Comcast (or direct TV).
