Hello Everyone!
Next week is Marcia's 80th day after her transplant! This is a big milestone in the process and a point when much testing and evaluating will be done to see just how everything is working. As we said in our last message, the Graft-Versus-Host Disease (GVHD) that was so very threatening for awhile now seems to be completely gone. The challenges continue with the edema - water retention - slowly going down but still there and the recent discovery of some types of food that she is just unable to eat right now. Under all of these circumstances she continues to do pretty well however, as we can all only imagine, she really, really, really just wants to go HOME!
Christmas day was a busy one as family gathered at the house and had breakfast and then took presents and breakfast for Marcia down to the hospital. There they took the bed out of the room and brought in chairs for everyone and gifts were opened and then everyone shared a "buffet" brunch. Lots of people on the floor had visitors but we didn't see anything anywhere like Marcia's Christmas "party".
Tina has been staying with Marcia at the hospital - sleeping on a cot in her room - almost every night for going on the last month. This has been difficult for her and her family but Marcia has really needed her and we feel certain her being there has made a significant positive difference in her progress. Her family - Jeff and the kids - have supported her and it's helped that Brianna now has her license and has been able to do some of the driving for herself and Justin.
Shawna has taken over all of Marcia's tasks at the Scrapbook Pad, in addition to her own and has done a great job of keeping the store going. This too has been a team effort on the part of her and her family - Chris and the kids - and has not been easy either as, as most of you know, her children are younger - Cameron is just in kindergarten and Alexa is going to be 11 in a couple of months - and she too lives out a ways from the store and she has a second very demanding job as well.
We want to thank you all for your continued interest and caring and support. We ask that you continue to hold Marcia and all of us in your positive thoughts and prayers and we'll do the same for you.
We wish you a happy and blessed new year and we hope against hope that next year will be an easier and happier one for all of us.
Very best New Year's wishes!
The McNulty Family
Marcia & Pat
Tina & Jeff
grandkids Brianna & Justin
Shawna & Chris
grandkids Alexa & Cameron
Thursday, December 31, 2009
Thursday, December 24, 2009
Marcia's News for Christmas Eve ~ December 24th
Hello Everyone and Merry Christmas!
We have some very good news to share today. As we told you in our last entry, Marcia's situation had become very dire because she developed 'Acute Graft versus Host Disease' (GVHD) and it did not respond at all to the most effective treatment of more than a week of steroids and other drugs. It was then decided to try a treatment called ATG, which consisted of four days of increasingly heavy chemotherapy. They did not know if this would work and there were two (at least) big dangers with it. The first was that because it is such a "heavy" protocol she would not tolerate it well and could not complete it. The second was that if it worked the way it should, it would significantly lower her already severely low immune system.
Now to the good news. She tolerated the treatment very well and the results of testing last Friday came in yesterday and the GVHD is GONE! The treatment worked. Marcia is now on what they tell us will be a very long and very gradual road to recovery. Her situation is still very serious but not nearly as grave as it was when we reported before. As Pat put it, it's gone from hour to hour to day to day, and under the circumstances that's a very good thing.
She does have several "normal" side effects from this course of treatment... really severe edema - water retention we always called it - that they need to let nature treat because to give her diuretics right now could work against the bigger process. She has 30 to 40 pounds of water weight and edema blisters from this but they assure us that this should self correct with time. She also had to go onto insulin for a bit because apparently coming off of heavy steroids messes with your insulin levels. And she had a heart murmur that was thoroughly tested and they think will not cause big problems and will resolve in time. She is very weak right now and that is frustrating for her but she continues to participate fully in physical and occupational therapy. She hates it, but she does it.
So.... This is all very very good news. In fact it is just about the best news we could have gotten all things considered. It still is not going to be easy or quick, and there are still many other things that can go wrong all along the way, but this was a huge hurdle and she cleared it in an almost miraculous way.
We want to wish all of you a very happy and very blessed Christmas. We will keep you in our thoughts and prayers and we ask that you do the same for all of us.
Merry Christmas!!
Love!!
Marcia's Family
We have some very good news to share today. As we told you in our last entry, Marcia's situation had become very dire because she developed 'Acute Graft versus Host Disease' (GVHD) and it did not respond at all to the most effective treatment of more than a week of steroids and other drugs. It was then decided to try a treatment called ATG, which consisted of four days of increasingly heavy chemotherapy. They did not know if this would work and there were two (at least) big dangers with it. The first was that because it is such a "heavy" protocol she would not tolerate it well and could not complete it. The second was that if it worked the way it should, it would significantly lower her already severely low immune system.
Now to the good news. She tolerated the treatment very well and the results of testing last Friday came in yesterday and the GVHD is GONE! The treatment worked. Marcia is now on what they tell us will be a very long and very gradual road to recovery. Her situation is still very serious but not nearly as grave as it was when we reported before. As Pat put it, it's gone from hour to hour to day to day, and under the circumstances that's a very good thing.
She does have several "normal" side effects from this course of treatment... really severe edema - water retention we always called it - that they need to let nature treat because to give her diuretics right now could work against the bigger process. She has 30 to 40 pounds of water weight and edema blisters from this but they assure us that this should self correct with time. She also had to go onto insulin for a bit because apparently coming off of heavy steroids messes with your insulin levels. And she had a heart murmur that was thoroughly tested and they think will not cause big problems and will resolve in time. She is very weak right now and that is frustrating for her but she continues to participate fully in physical and occupational therapy. She hates it, but she does it.
So.... This is all very very good news. In fact it is just about the best news we could have gotten all things considered. It still is not going to be easy or quick, and there are still many other things that can go wrong all along the way, but this was a huge hurdle and she cleared it in an almost miraculous way.
We want to wish all of you a very happy and very blessed Christmas. We will keep you in our thoughts and prayers and we ask that you do the same for all of us.
Merry Christmas!!
Love!!
Marcia's Family
Saturday, December 12, 2009
Marcia's news for December 12th
Hello Everyone:
Today we have some serious news for you.
The 'Acute Graft versus Host Disease' (GVHD) that we told you about in our last entry has now become a much more dangerous problem because it did not respond to the initial and most common course of treatment which is steroids and several other drugs. GVHD is a condition in which cells in the donor marrow see the recipient’s tissues as foreign and react against them. This creates massive inflammation which then leads to infection. It can occur on the skin as a rash, and Marcia has a bit of that, and it can also show up in the liver. However it is most lethal in the digestive tract and that is what she is fighting now. This is not a staph or other type of infection, although the system can be so weakened by it that those occur.
As we said, the first course of attack for it is the steroids, and treatment with those for more than a week did not work at all. Yesterday she finished up another treatment attempt that is called Antithymocyte globulin or ATG. This consists of four days of IV treatment in increasing doses. It is a very heavy protocol and some patients do not handle it well. Unfortunately this treatment has the effect of antibodies to the T cells to "back them off" so to speak, which further lowers an already fragile immune system and even if successful leaves the patient even more vulnerable to all kinds of infections, internal and external. And even if successful, it does not guarantee that the bone marrow transplant itself will succeed in treating the original disease.
We waited through this week to know more and see how she tolerated this treatment as some people don't handle it well and have to be taken back off of it prior to completion however she has done just fine with it. It may be a week or two before we know whether or not it has been successful. Even if successful it will be even longer before we know if this will be a long term chronic condition for her.
We have tried to be very positive with all of our news while also being accurate and realistic. However we feel that we must let you know now that if this cannot be treated and/or controlled it is the most lethal secondary effect of transplants and she could die from it. She is awake, alert and eating and participating in her walking and other therapies however she is also fighting for her life. We decided that you should know that and understand it as this process goes forward. For now please no visits and no phone calls as she needs all of her strength and focus to be on resting and fighting this off.
We will keep you posted with any news that develops however, as we said, this is day by day and hour by hour and we probably won't know much right away.
Please, please keep her in your prayers.
Thank you all,
Marcia's Family
Today we have some serious news for you.
The 'Acute Graft versus Host Disease' (GVHD) that we told you about in our last entry has now become a much more dangerous problem because it did not respond to the initial and most common course of treatment which is steroids and several other drugs. GVHD is a condition in which cells in the donor marrow see the recipient’s tissues as foreign and react against them. This creates massive inflammation which then leads to infection. It can occur on the skin as a rash, and Marcia has a bit of that, and it can also show up in the liver. However it is most lethal in the digestive tract and that is what she is fighting now. This is not a staph or other type of infection, although the system can be so weakened by it that those occur.
As we said, the first course of attack for it is the steroids, and treatment with those for more than a week did not work at all. Yesterday she finished up another treatment attempt that is called Antithymocyte globulin or ATG. This consists of four days of IV treatment in increasing doses. It is a very heavy protocol and some patients do not handle it well. Unfortunately this treatment has the effect of antibodies to the T cells to "back them off" so to speak, which further lowers an already fragile immune system and even if successful leaves the patient even more vulnerable to all kinds of infections, internal and external. And even if successful, it does not guarantee that the bone marrow transplant itself will succeed in treating the original disease.
We waited through this week to know more and see how she tolerated this treatment as some people don't handle it well and have to be taken back off of it prior to completion however she has done just fine with it. It may be a week or two before we know whether or not it has been successful. Even if successful it will be even longer before we know if this will be a long term chronic condition for her.
We have tried to be very positive with all of our news while also being accurate and realistic. However we feel that we must let you know now that if this cannot be treated and/or controlled it is the most lethal secondary effect of transplants and she could die from it. She is awake, alert and eating and participating in her walking and other therapies however she is also fighting for her life. We decided that you should know that and understand it as this process goes forward. For now please no visits and no phone calls as she needs all of her strength and focus to be on resting and fighting this off.
We will keep you posted with any news that develops however, as we said, this is day by day and hour by hour and we probably won't know much right away.
Please, please keep her in your prayers.
Thank you all,
Marcia's Family
Friday, December 4, 2009
Marcia's News for December 4th
Hello Everyone!
Well we have some very good news and another challenge to report. First the good news. The results of the most recent bone marrow biopsy test now indicate that the transplant is working. The numbers are going in the right direction to where they need to be and things are "taking"... progressing as they should. That of course is tremendous news!
Unfortunately, as we reported in our last news, Marcia is back in UW Hospital and she has now been diagnosed with HVD which is Host versus Donor disease. For her it has shown up on her skin as a rash and the bigger challenge, in her digestive track which is what has caused her inability to eat or retain much of anything she eats or takes by mouth. What happens is that the white blood cells become over-reactive which leads to inflammation which leads to infection. The treatment is that she takes nothing by mouth for a few days and she must have still more steroids. This means that she will be in the hospital for a couple of weeks while this is treated and of course while she requires everything to be done by port and IV. This does not mean that she is rejecting the transplant! It is a secondary condition that often happens subsequent to it and it is treatable.
The steroids have really knocked her out and she is very sleepy and groggy so visting isn't really a good idea right now. You could try to call, but we're mostly letting her rest and sleep thru as much of this part as she can.
As usual we'll keep you posted as things change and progress. Please keep up all the good thoughts and wishes and prayers.
Marcia's Family
Well we have some very good news and another challenge to report. First the good news. The results of the most recent bone marrow biopsy test now indicate that the transplant is working. The numbers are going in the right direction to where they need to be and things are "taking"... progressing as they should. That of course is tremendous news!
Unfortunately, as we reported in our last news, Marcia is back in UW Hospital and she has now been diagnosed with HVD which is Host versus Donor disease. For her it has shown up on her skin as a rash and the bigger challenge, in her digestive track which is what has caused her inability to eat or retain much of anything she eats or takes by mouth. What happens is that the white blood cells become over-reactive which leads to inflammation which leads to infection. The treatment is that she takes nothing by mouth for a few days and she must have still more steroids. This means that she will be in the hospital for a couple of weeks while this is treated and of course while she requires everything to be done by port and IV. This does not mean that she is rejecting the transplant! It is a secondary condition that often happens subsequent to it and it is treatable.
The steroids have really knocked her out and she is very sleepy and groggy so visting isn't really a good idea right now. You could try to call, but we're mostly letting her rest and sleep thru as much of this part as she can.
As usual we'll keep you posted as things change and progress. Please keep up all the good thoughts and wishes and prayers.
Marcia's Family
Saturday, November 28, 2009
Marcia's News for November 28th
Hello Everyone
Well, we've had another uh-oh on this very challenging road back to good health. Marcia went back into the hospital Friday morning after a very nice family Thanksgiving. Problem was that she has been unable to either eat or "retain" anything she eats for about the last week. Along with that being very bad for her health in general - she lost 10 pounds in that week - whatever is causing it has to be researched and diagnosed and treated and very quickly. Fortunately they didn't wait and called and went down to Fred Hutch right away on Friday morning so the doctors feel that they caught and dealt with it right away. We're not sure what is causing this trouble but we'll let you know as soon as we know. They do say that her "numbers" - blood counts and etc - continue to be OK so this is most likely yet another of those awful "side" issues we've been dealing with all along.
We'll let you know more as soon as we know.
Thanks,
Marcia's Family
Well, we've had another uh-oh on this very challenging road back to good health. Marcia went back into the hospital Friday morning after a very nice family Thanksgiving. Problem was that she has been unable to either eat or "retain" anything she eats for about the last week. Along with that being very bad for her health in general - she lost 10 pounds in that week - whatever is causing it has to be researched and diagnosed and treated and very quickly. Fortunately they didn't wait and called and went down to Fred Hutch right away on Friday morning so the doctors feel that they caught and dealt with it right away. We're not sure what is causing this trouble but we'll let you know as soon as we know. They do say that her "numbers" - blood counts and etc - continue to be OK so this is most likely yet another of those awful "side" issues we've been dealing with all along.
We'll let you know more as soon as we know.
Thanks,
Marcia's Family
Wednesday, November 25, 2009
Marcia's News for November 25th
Hello Everyone!
Were happy to tell you that Marcia made it back home from the hospital late on Saturday evening and she's been able to stay at home, except of course for the daily trips down to Fred Hutch.
She continues to do well and all the numbers related to the transplant are going in the right direction, although a little slowly. With time the process will sort of push itself forward as her blood and marrow numbers increase and the medications she requires go down. When that happens she will feel much better and the side issues that keep coming up and having to be dealt with that are so time consuming and discouraging will happen less and less.
So, she's at home and doing better. She is "callable" (if you can catch her there and not down at Fred Hutch) but not yet visitable except by the very closest people, but the "open for visits" day should come before too much longer.
We wish you all a happy Thanksgiving!!
Thanks and keep up the good thoughts and wishes and prayers!
Marcia's Family
Were happy to tell you that Marcia made it back home from the hospital late on Saturday evening and she's been able to stay at home, except of course for the daily trips down to Fred Hutch.
She continues to do well and all the numbers related to the transplant are going in the right direction, although a little slowly. With time the process will sort of push itself forward as her blood and marrow numbers increase and the medications she requires go down. When that happens she will feel much better and the side issues that keep coming up and having to be dealt with that are so time consuming and discouraging will happen less and less.
So, she's at home and doing better. She is "callable" (if you can catch her there and not down at Fred Hutch) but not yet visitable except by the very closest people, but the "open for visits" day should come before too much longer.
We wish you all a happy Thanksgiving!!
Thanks and keep up the good thoughts and wishes and prayers!
Marcia's Family
Thursday, November 19, 2009
Marcia's news for November 18th
Hello Everyone:
The wild weather knocked out my Internet last night and into today, but we're back and here is the latest.
We'll start by saying that Marcia is not very happy about it, and that's putting it mildly, but she went back into the UW Hospital yesterday. She has some sort of bacteria that they must identify and treat right away and vigorously. It may be a systemic thing again... those things that as we've mentioned before we all carry but that get a good hold on you when your immune system is wiped out, and/or they are also looking into it coming from her port. If that's the case they will have to fix it... maybe by taking the port out, as it would continue to feed bacteria into her system so long as it's there.
So she is back to hating the food and missing being at home, although the amount of time they were spending away from home and on the freeway and at Fred Hutch - which was lots, lots, lots every day, sometimes twice a day, and at all hours - just tells you how very much she does not want to be in the hospital.
The good news is that all the transplant numbers that matter are going well and going in the right direction. They say she is doing fine on that front so all the rest of these issues are being dealt with so aggressively in order to keep that happening until her immune system builds back up.
Her direct phone number at UW is 206/598-3910 and she is in room 8224. She is determined to get back out as soon as she can and she is absolutely determined to be at home for Thanksgiving!!!
We'll let you know!
Marcia's Family
The wild weather knocked out my Internet last night and into today, but we're back and here is the latest.
We'll start by saying that Marcia is not very happy about it, and that's putting it mildly, but she went back into the UW Hospital yesterday. She has some sort of bacteria that they must identify and treat right away and vigorously. It may be a systemic thing again... those things that as we've mentioned before we all carry but that get a good hold on you when your immune system is wiped out, and/or they are also looking into it coming from her port. If that's the case they will have to fix it... maybe by taking the port out, as it would continue to feed bacteria into her system so long as it's there.
So she is back to hating the food and missing being at home, although the amount of time they were spending away from home and on the freeway and at Fred Hutch - which was lots, lots, lots every day, sometimes twice a day, and at all hours - just tells you how very much she does not want to be in the hospital.
The good news is that all the transplant numbers that matter are going well and going in the right direction. They say she is doing fine on that front so all the rest of these issues are being dealt with so aggressively in order to keep that happening until her immune system builds back up.
Her direct phone number at UW is 206/598-3910 and she is in room 8224. She is determined to get back out as soon as she can and she is absolutely determined to be at home for Thanksgiving!!!
We'll let you know!
Marcia's Family
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