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
Tuesday, November 10, 2009
Marcia's News for Monday November 9th
Hello Everyone:
Sorry for the slightly late notice for this great news but....... MARCIA WENT HOME ON MONDAY!!!!
She was so happy to get home... She was really done with the hospital food and all she wanted was ribs and creamed onions! Tina made her some great homemade soup for her first meal back at home since October 5th.
She is doing very, very well and all of the numbers that really matter are going in the right direction now. This week she (and her chauffeur Pat) will have to be at Fred Hutch for blood checks and treatments every single day and the platlets and red blood cell transfusions continue.
Although the transplant process is working well, there continue to be some "peripheral" issues that must also be monitored and dealt with too, along with everything else. She now has a virus that is common to everyone however when you have no immune system it can get a quick hold on you and become a real problem. This one carries with it the threat of pneumonia. For that she will need infusion therapy twice a day for three weeks and then once a day for another four weeks after that, on top of everything else.
So please keep up the great thoughts and prayers. Hopefully she has the worst behind her, but this is a marathon, not a sprint and she continues to need all of your wonderful good wishes and positive support. She can accept phone calls at home - if you can catch her there - but she cannot have visitors yet as she still has almost no immunities.
Thanks to all of you!!
Marcia's Family
Sorry for the slightly late notice for this great news but....... MARCIA WENT HOME ON MONDAY!!!!
She was so happy to get home... She was really done with the hospital food and all she wanted was ribs and creamed onions! Tina made her some great homemade soup for her first meal back at home since October 5th.
She is doing very, very well and all of the numbers that really matter are going in the right direction now. This week she (and her chauffeur Pat) will have to be at Fred Hutch for blood checks and treatments every single day and the platlets and red blood cell transfusions continue.
Although the transplant process is working well, there continue to be some "peripheral" issues that must also be monitored and dealt with too, along with everything else. She now has a virus that is common to everyone however when you have no immune system it can get a quick hold on you and become a real problem. This one carries with it the threat of pneumonia. For that she will need infusion therapy twice a day for three weeks and then once a day for another four weeks after that, on top of everything else.
So please keep up the great thoughts and prayers. Hopefully she has the worst behind her, but this is a marathon, not a sprint and she continues to need all of your wonderful good wishes and positive support. She can accept phone calls at home - if you can catch her there - but she cannot have visitors yet as she still has almost no immunities.
Thanks to all of you!!
Marcia's Family
Monday, November 2, 2009
Marcia's News for Monday November 2nd
Hello Everyone:
Marcia continues through the process and the good news is that some white and a few red cells are showing up and attaching into her bone marrow. It is normal that the red cells show up later and more slowly than the whites however this is good news so far. The pleurisy has improved quite a bit and she is requiring less pain medication for it. She is having a lot of trouble eating as nothing tastes good at all and she has been unable to keep down much of what she does eat so that has been a big challenge. Her doctors tell her that when the cells begin taking in numbers she will feel much better. We are all looking forward to that!!
Although her "visitable" status can change very quickly, right now she can have visitors. She is in room 8256 - on the eighth floor of UW hospital. She can also have phone calls, although sometimes she is very groggy so she can't talk for very long. She cannot have fruit or flowers or other kinds of gifts however she still loves the grande size of caramel frappachinos! The visits should not be too long. At this time visitors aren't being required to "suit up" with gowns and etc. so that is a plus for everyone.
We will continue to keep you posted. It just may be that the worst is behind her. Time will tell of course but for right now everything is going as it should.
Thanks and keep up the positive thoughts and prayers,
Marcia's Family
Marcia continues through the process and the good news is that some white and a few red cells are showing up and attaching into her bone marrow. It is normal that the red cells show up later and more slowly than the whites however this is good news so far. The pleurisy has improved quite a bit and she is requiring less pain medication for it. She is having a lot of trouble eating as nothing tastes good at all and she has been unable to keep down much of what she does eat so that has been a big challenge. Her doctors tell her that when the cells begin taking in numbers she will feel much better. We are all looking forward to that!!
Although her "visitable" status can change very quickly, right now she can have visitors. She is in room 8256 - on the eighth floor of UW hospital. She can also have phone calls, although sometimes she is very groggy so she can't talk for very long. She cannot have fruit or flowers or other kinds of gifts however she still loves the grande size of caramel frappachinos! The visits should not be too long. At this time visitors aren't being required to "suit up" with gowns and etc. so that is a plus for everyone.
We will continue to keep you posted. It just may be that the worst is behind her. Time will tell of course but for right now everything is going as it should.
Thanks and keep up the positive thoughts and prayers,
Marcia's Family
Saturday, October 24, 2009
Marcia's news for Saturday October 24th
Hello Everyone:
In terms of the "big picture" of Marcia's bone marrow transplant process she is doing very well. They will not know for about another week to 10 days how the marrow is taking. She has not felt very well however her doctors tell her that she has been progressing normally for the process.
Unfortunately, along with everything else, she has developed pleurisy, which is an inflammation of the membranes around the lungs. She has had this several times before in the past however the medication with which it is treated can't be used for her now due to the chemo and the transplant. And it is very, very painful... excruciatingly so. All they have been able to do for it right now is treat the pain with some heavy duty medication which has made her feel even more unwell. She has a medication pump for that which is timed and she can add an extra dose if she needs it.
In addition she has a little nasal / respiratory virus which should not be a problem for her but which requires everyone who enters the room to "suit up" for the visit and remove the gowns and gloves and etc. when they leave so as not to carry anything out into the rest of the hospital environment and the other patients there. For that reason and the fact that she is feeling so unwell we are continuing to limit visits to family and very close friends only for now. You may call and speak to her, however even those telephone conversations should be kept short as she is groggy and very, very tired.
All in all everything is progressing just fine, but this sure has not been an easy path. Needless to say we will be having a very joyous celebration about a year from now when all is well and this is all behind us, and we're looking forward to everyones' participation in that!!
Thanks as always! Keep up the good thoughts and good wishes!
Marcia's Family
In terms of the "big picture" of Marcia's bone marrow transplant process she is doing very well. They will not know for about another week to 10 days how the marrow is taking. She has not felt very well however her doctors tell her that she has been progressing normally for the process.
Unfortunately, along with everything else, she has developed pleurisy, which is an inflammation of the membranes around the lungs. She has had this several times before in the past however the medication with which it is treated can't be used for her now due to the chemo and the transplant. And it is very, very painful... excruciatingly so. All they have been able to do for it right now is treat the pain with some heavy duty medication which has made her feel even more unwell. She has a medication pump for that which is timed and she can add an extra dose if she needs it.
In addition she has a little nasal / respiratory virus which should not be a problem for her but which requires everyone who enters the room to "suit up" for the visit and remove the gowns and gloves and etc. when they leave so as not to carry anything out into the rest of the hospital environment and the other patients there. For that reason and the fact that she is feeling so unwell we are continuing to limit visits to family and very close friends only for now. You may call and speak to her, however even those telephone conversations should be kept short as she is groggy and very, very tired.
All in all everything is progressing just fine, but this sure has not been an easy path. Needless to say we will be having a very joyous celebration about a year from now when all is well and this is all behind us, and we're looking forward to everyones' participation in that!!
Thanks as always! Keep up the good thoughts and good wishes!
Marcia's Family
Wednesday, October 14, 2009
Marcia's news for October 14th
Hello Everyone:
Well Marcia now officially has two birthdays! And she's already informed Pat that there will be parties for both!
Yesterday - October 13th is her second birthday - day zero per Fred Hutch and today is day 1. Starting at 2:00 am yesterday morning (yes, AM!) she received the first of 3 bags of donor bone marrow. Each bag took about 5 hours and she finished up just after 4:00 PM. She is not feeling very well, which the doctors tell her is fine and normal for the process. She looks great - good color! - and has been eating OK however she is fighting the expected nausea and they are giving her lots of medication to counteract that. She is not having visitors except close family right now so we'll just keep everyone updated here.
As usual, lots of prayers and positive thoughts are wonderful and welcomed.
Thanks,
Marcia's Family
Well Marcia now officially has two birthdays! And she's already informed Pat that there will be parties for both!
Yesterday - October 13th is her second birthday - day zero per Fred Hutch and today is day 1. Starting at 2:00 am yesterday morning (yes, AM!) she received the first of 3 bags of donor bone marrow. Each bag took about 5 hours and she finished up just after 4:00 PM. She is not feeling very well, which the doctors tell her is fine and normal for the process. She looks great - good color! - and has been eating OK however she is fighting the expected nausea and they are giving her lots of medication to counteract that. She is not having visitors except close family right now so we'll just keep everyone updated here.
As usual, lots of prayers and positive thoughts are wonderful and welcomed.
Thanks,
Marcia's Family
Saturday, October 10, 2009
October 10th ~ Marcia's news
Hello everyone!
Well, we're back with our updates! Since our last entry Marcia (and Pat and Tina and Shawna) have been through a LOT! As we told you in our last entry, she came home at the end of August and had a couple of "normal" weeks just catching up with people and places and tasks and of course The Store. She still had to be very careful of crowds and bugs and NO HUGS, however she was able to drive and go places and do things on her own... a wonderful, as we said NORMAL, respite.
Then, on September 22nd, the process of preparing for the transplant began at Fred Hutchinson on Lake Union. She had appointments there almost every single day for two weeks with only a couple of days off. They checked everything, and we do mean everything. At every single stage and level of the process Marcia aced the tests. Her heart and lungs are great, in fact her pulmonary (lung) function tested so high that they had to redo it because they thought there might have been a mistake in the test! She met with all different kinds of specialists and even ended up having some last minute dental work that they wanted fixed before the process. We just can't say enough about the process and the people down at Fred Hutch. It is like a big giant factory and the organization and communication among all the different elements is unbelievable. One time something changed at one station and when we got to the next appointment, a couple of floors away, everything had been updated to show the change. The people have been great too. And they really, really know their jobs!
So, last Monday October 5th Marcia met with the doctor there one more time and then checked into the University of Washington Hospital to begin the countdown process to the transplant. She has started the chemo which runs on a "days on/days off" schedule and right now she is right on target for the bone marrow transplant on Monday the 12th. The process will continue with other chemo after the transplant to prevent rejection and she will probably be in the hospital another few weeks. But one thing we've learned with all of this - and we've learned A LOT! - is that it is a process. Everything is subject to change on a daily - no make that an hourly - basis, depending on what they are finding and seeing, so there are almost never any absolutes.
Just a note as to the donor... somewhere in Northern Europe (but, surprisingly, not Scandinavia) is a very generous person who is a perfect 10 point match for Marcia. We know nothing else about them except their blood type, not even their gender, but those of you who have been praying for Marcia might want to add a little prayer of thanks for them too. And some of you who had considered becoming a donor for Marcia might want to consider going onto the registry anyway (see our previous article on the process) because somewhere there is a stranger - maybe halfway around the world - praying for your help right now.
Thanks and keep up the positive thoughts and prayers!
Marcia's Family
Well, we're back with our updates! Since our last entry Marcia (and Pat and Tina and Shawna) have been through a LOT! As we told you in our last entry, she came home at the end of August and had a couple of "normal" weeks just catching up with people and places and tasks and of course The Store. She still had to be very careful of crowds and bugs and NO HUGS, however she was able to drive and go places and do things on her own... a wonderful, as we said NORMAL, respite.
Then, on September 22nd, the process of preparing for the transplant began at Fred Hutchinson on Lake Union. She had appointments there almost every single day for two weeks with only a couple of days off. They checked everything, and we do mean everything. At every single stage and level of the process Marcia aced the tests. Her heart and lungs are great, in fact her pulmonary (lung) function tested so high that they had to redo it because they thought there might have been a mistake in the test! She met with all different kinds of specialists and even ended up having some last minute dental work that they wanted fixed before the process. We just can't say enough about the process and the people down at Fred Hutch. It is like a big giant factory and the organization and communication among all the different elements is unbelievable. One time something changed at one station and when we got to the next appointment, a couple of floors away, everything had been updated to show the change. The people have been great too. And they really, really know their jobs!
So, last Monday October 5th Marcia met with the doctor there one more time and then checked into the University of Washington Hospital to begin the countdown process to the transplant. She has started the chemo which runs on a "days on/days off" schedule and right now she is right on target for the bone marrow transplant on Monday the 12th. The process will continue with other chemo after the transplant to prevent rejection and she will probably be in the hospital another few weeks. But one thing we've learned with all of this - and we've learned A LOT! - is that it is a process. Everything is subject to change on a daily - no make that an hourly - basis, depending on what they are finding and seeing, so there are almost never any absolutes.
Just a note as to the donor... somewhere in Northern Europe (but, surprisingly, not Scandinavia) is a very generous person who is a perfect 10 point match for Marcia. We know nothing else about them except their blood type, not even their gender, but those of you who have been praying for Marcia might want to add a little prayer of thanks for them too. And some of you who had considered becoming a donor for Marcia might want to consider going onto the registry anyway (see our previous article on the process) because somewhere there is a stranger - maybe halfway around the world - praying for your help right now.
Thanks and keep up the positive thoughts and prayers!
Marcia's Family
Wednesday, October 7, 2009
MESSAGE FROM MARCIA!
Hi everyone, I really miss the store and all my scrapbook friends. I am right now in University Hosp. preparing for my transplant. I checked in Monday the 5th and after massive chemo and lots of preparing they will do the transplant on the 12th. I will be here at least 5 weeks or longer. They started the chemo this morning. feeling pretty good so far, but have 3 more days of it. It will pretty much wipe out all my blood cells so I cannot have visitors for awhile. Please say a prayer that it all works and I can go on with life. I may be away from the store as long as a year. Hopefully everything goes perfect and I can come back to the store sooner.
I want to send a special thanks to a lot of people who have come to visit and helped out in the store.
Kathie Crozier - a very special friend who has been updating this blog (this is the only one I have written).
My husband Pat who has been driving me every day to all my appointments and taking good care of me.
My two girls Tina and Shawna. Tina has been coordinating all my appointments and attending most of my appointments to be one of my caregivers during my recovery. Shawna has been doing a great job running our store. It has been a big job especially being she still has two little ones to get off to school every day and then drive from Lk Stevens to Shoreline every day. I raised a couple of good kids. Also Linda Brush who we love like our own (our foster daughter), who came from Alaska and spent a week with Pat and visited every day at the hospital.
My good friends Janis Wells, Judi Reed, Patty Schmauder, Kathy Cunningham, Diane Voiland, Dave and Margie Booth, and Loretta Jackson who works at NW Hosp and came to visit me everyday and who brought me cute litte stuffed puppies to keep me company.
My soccer kids: Torry, Dianne, Deana, Christy, Jane and her mom Carol who came to visit. Also all of the girls who called or sent cards, Maya Erin, and Carol. It is really nice hearing from everyone.
My favorite and only hair dresser TROY (who I have been going to for 18 yrs and love alot) who came to the hospital and shaved my head when my hair started to come out.
My Favorite boss Dave Clark and all my work friends at King County. Steve Boyce, Bill and Mary Eckel, Stan Unger, Steve Johnson and his wife Bev who has had this same kind of transplant and is doing wonderful. Elenore and Bernie Griffen.
My store friends - who have gotten to be my good friends also. If I forget someone please forgive me as I have had my first series of chemo and I understand there is something called chemo brain.
Janet Parks, Patty Austin, Nan Peterson, Sandy Wiley, and Marilyn Savage (who organized Scrap Pink this year) Thanks again ladies you did a great job!
Cathy Cornwell, Barb Harwood, Min Hunt, Kathy Kelly, Ginny Lebeck, Shay Thoelke, Judy Rieke, and all my store friends that sent cards or prayers.
Als0, thanks to Pats great cousins for coming by and sending cards - it was great seeing everyone. Special thanks to kristy for keeping in contact with everyone and arranging for someone to come to the hospital to do my nails. It was really nice to see Mardy and Vickie and Sally and Mike. Keep in contact guys.
I have more chemo tomorrow so Kathie will probably be updating the blog.
I love you all. Keep the prayers going.
Marcia
I want to send a special thanks to a lot of people who have come to visit and helped out in the store.
Kathie Crozier - a very special friend who has been updating this blog (this is the only one I have written).
My husband Pat who has been driving me every day to all my appointments and taking good care of me.
My two girls Tina and Shawna. Tina has been coordinating all my appointments and attending most of my appointments to be one of my caregivers during my recovery. Shawna has been doing a great job running our store. It has been a big job especially being she still has two little ones to get off to school every day and then drive from Lk Stevens to Shoreline every day. I raised a couple of good kids. Also Linda Brush who we love like our own (our foster daughter), who came from Alaska and spent a week with Pat and visited every day at the hospital.
My good friends Janis Wells, Judi Reed, Patty Schmauder, Kathy Cunningham, Diane Voiland, Dave and Margie Booth, and Loretta Jackson who works at NW Hosp and came to visit me everyday and who brought me cute litte stuffed puppies to keep me company.
My soccer kids: Torry, Dianne, Deana, Christy, Jane and her mom Carol who came to visit. Also all of the girls who called or sent cards, Maya Erin, and Carol. It is really nice hearing from everyone.
My favorite and only hair dresser TROY (who I have been going to for 18 yrs and love alot) who came to the hospital and shaved my head when my hair started to come out.
My Favorite boss Dave Clark and all my work friends at King County. Steve Boyce, Bill and Mary Eckel, Stan Unger, Steve Johnson and his wife Bev who has had this same kind of transplant and is doing wonderful. Elenore and Bernie Griffen.
My store friends - who have gotten to be my good friends also. If I forget someone please forgive me as I have had my first series of chemo and I understand there is something called chemo brain.
Janet Parks, Patty Austin, Nan Peterson, Sandy Wiley, and Marilyn Savage (who organized Scrap Pink this year) Thanks again ladies you did a great job!
Cathy Cornwell, Barb Harwood, Min Hunt, Kathy Kelly, Ginny Lebeck, Shay Thoelke, Judy Rieke, and all my store friends that sent cards or prayers.
Als0, thanks to Pats great cousins for coming by and sending cards - it was great seeing everyone. Special thanks to kristy for keeping in contact with everyone and arranging for someone to come to the hospital to do my nails. It was really nice to see Mardy and Vickie and Sally and Mike. Keep in contact guys.
I have more chemo tomorrow so Kathie will probably be updating the blog.
I love you all. Keep the prayers going.
Marcia
Tuesday, August 25, 2009
Marcia's News for Tuesday August 25th
Hello Everyone!
Marcia came home from the hospital on Saturday! She is feeling good and doing very well. All her blood numbers are where they should be and are staying there. The process for the transplant has begun and continues. The transplant should take place at the end of September if everything continues to go as it's supposed to. The donors - there are two exact matches! - are both somewhere in Europe so the logistics of that have to be arranged along with all of the prep work for her. There are a lot of logistics that go into the procedure!!
Marcia has been down to the store twice and has been so happy to get back there. She can't really come back to work there yet, but she is going to be doing some of her wonderful page kits from home as she goes through the process and recovery. That will be a "win/win" as it will give her something great to do and the store will have more of her cute kits!
More again soon!
Best Regards!
Marcia's Family
Marcia came home from the hospital on Saturday! She is feeling good and doing very well. All her blood numbers are where they should be and are staying there. The process for the transplant has begun and continues. The transplant should take place at the end of September if everything continues to go as it's supposed to. The donors - there are two exact matches! - are both somewhere in Europe so the logistics of that have to be arranged along with all of the prep work for her. There are a lot of logistics that go into the procedure!!
Marcia has been down to the store twice and has been so happy to get back there. She can't really come back to work there yet, but she is going to be doing some of her wonderful page kits from home as she goes through the process and recovery. That will be a "win/win" as it will give her something great to do and the store will have more of her cute kits!
More again soon!
Best Regards!
Marcia's Family
Friday, August 21, 2009
Marcia's Great News for Friday August 21st!
Well guess what?!!!
Marcia is going home tomorrow! She may need a couple of last minute "fine tune" procedures, however her return home on Saturday is just about for certain! Can you imagine having been in the hospital since July the 7th!? We know some of you can because many of you who have been through similar health challenges have been to see her and encourage her with your great stories and support. For the rest of us, we can only just imagine. Yuck!
Next steps will be additional testing and then getting set up and ready for the transplant. We can now let you know that a donor has been found. We didn't want to say anything until it was as sure as it can be with things like this, but there were not one but two perfect matches on that wonderful national registry we talked about in one of our earlier postings! Massive amounts of paperwork have been completed and the process has begun. Of course we'll keep you posted as everything in that procedure moves forward.
So.... great news today!
Very best wishes and thanks to all of you who have been and continue to be such wonderful friends!
Marcia's Family
Marcia is going home tomorrow! She may need a couple of last minute "fine tune" procedures, however her return home on Saturday is just about for certain! Can you imagine having been in the hospital since July the 7th!? We know some of you can because many of you who have been through similar health challenges have been to see her and encourage her with your great stories and support. For the rest of us, we can only just imagine. Yuck!
Next steps will be additional testing and then getting set up and ready for the transplant. We can now let you know that a donor has been found. We didn't want to say anything until it was as sure as it can be with things like this, but there were not one but two perfect matches on that wonderful national registry we talked about in one of our earlier postings! Massive amounts of paperwork have been completed and the process has begun. Of course we'll keep you posted as everything in that procedure moves forward.
So.... great news today!
Very best wishes and thanks to all of you who have been and continue to be such wonderful friends!
Marcia's Family
Tuesday, August 18, 2009
Marcia's news for Tuesday August 18th
Good Afternoon:
Some good news! Marcia can have visitors again. And phone calls too! We would still like to limit visits to 20 or 30 minutes and it might be a good idea to call first (206/364-0500). You can also bring her caramel frappachinos again as she can have those too!
The other good news is that she may be going home soon! Not completely sure of the day but it may come as soon as this weekend. Her next treatment step will be to go to the doctors at Fred Hutchinson so that they can transition over to the transplant preparation process.
So, visits and phone calls are OK again and so are caramel frappachinos! Please continue with no other food or flowers or plants.
Thanks!
Marcia and her family
Some good news! Marcia can have visitors again. And phone calls too! We would still like to limit visits to 20 or 30 minutes and it might be a good idea to call first (206/364-0500). You can also bring her caramel frappachinos again as she can have those too!
The other good news is that she may be going home soon! Not completely sure of the day but it may come as soon as this weekend. Her next treatment step will be to go to the doctors at Fred Hutchinson so that they can transition over to the transplant preparation process.
So, visits and phone calls are OK again and so are caramel frappachinos! Please continue with no other food or flowers or plants.
Thanks!
Marcia and her family
Friday, August 14, 2009
SPECIAL BULLETIN FOR FRIDAY AUGUST 14TH
Good Morning:
We and Marcia's doctors are going to a NO VISITORS status for her for awhile. She is now experiencing many of the effects of the chemo, which is normal but she is not feeling well at all. In addition, it appears that she has some infection going on somewhere as she has an elevated temp.
This is not a dire situation and goes very much with the process however we want to let you know right away about no visits for now.
We will of course keep you updated as soon as things occur and/or change.
Thanks again!!
Marcia's family
We and Marcia's doctors are going to a NO VISITORS status for her for awhile. She is now experiencing many of the effects of the chemo, which is normal but she is not feeling well at all. In addition, it appears that she has some infection going on somewhere as she has an elevated temp.
This is not a dire situation and goes very much with the process however we want to let you know right away about no visits for now.
We will of course keep you updated as soon as things occur and/or change.
Thanks again!!
Marcia's family
Thursday, August 13, 2009
Marcia's news for Wednesday August 12th
Good Morning!
Marcia's process of getting ready for a bone marrow transplant continues. She is still extremely tired and really needs her rest. As before, no food or drink or flowers or plants any more please as we need to keep the risk of infection or illness to an absolute minimum. Everything is going well now and moving in the right direction so we want to do all that we can to keep that happening.
The phone remains unplugged. We love you and we know you love her, but it was ringing so much she wasn't able to nap and rest. Some of you have asked for her email address as apparently you would prefer to email her directly instead of commenting here. Here it is:
marciamcnulty@comcast.net
As always, we appreciate your love and concern and prayers.
Marcia's family
Marcia's process of getting ready for a bone marrow transplant continues. She is still extremely tired and really needs her rest. As before, no food or drink or flowers or plants any more please as we need to keep the risk of infection or illness to an absolute minimum. Everything is going well now and moving in the right direction so we want to do all that we can to keep that happening.
The phone remains unplugged. We love you and we know you love her, but it was ringing so much she wasn't able to nap and rest. Some of you have asked for her email address as apparently you would prefer to email her directly instead of commenting here. Here it is:
marciamcnulty@comcast.net
As always, we appreciate your love and concern and prayers.
Marcia's family
Monday, August 10, 2009
Marcia's news for Monday August 10th
Hello Everyone! Lots of news today.
First, the effects of the chemo have hit to some degree... not anywhere as hard as they might have and as they may yet, but now she is really, really tired. To be expected, but of course no fun at all.
For that reason we are going to limit visits to 20 minutes and we've unplugged the phone because it was ringing so much she couldn't get any rest.
In addition, because of the high susceptibility to infection, we are now going to have to go with no outside food or drink for her at all, along with no flowers or plants. In other words, please don't bring her anything organic at all... to eat or drink or to have in her room.
And as usual, no, no, no visits with even a remote possiblity of direct or indirect exposure to illness...! Our job now is to keep her from getting sick with anything (and keep her blood numbers right) until she can have a bone marrow transplant.
The transplant donor search process has begun through the search coordinator on her medical team. It turns out that none of her family who have been tested are matches, however the possibility of an unrelated match seems pretty strong, in part because there are many volunteers of a Scandinavian heritage.
The timing for a transplant is not yet clear and that is being discussed and decided. There may be another round of chemo first or, if a viable donor is available, it may be done soon or even right away. We'll let you know as soon as we know anything more on that.
We'll probably be updating these pages every other or every few days instead of every day as right now there's not a lot of new information on a daily basis. She's just following along with the process and it's going very well. Of course any big news we'll post right away!
Thanks again to everyone!
Marcia's Family
First, the effects of the chemo have hit to some degree... not anywhere as hard as they might have and as they may yet, but now she is really, really tired. To be expected, but of course no fun at all.
For that reason we are going to limit visits to 20 minutes and we've unplugged the phone because it was ringing so much she couldn't get any rest.
In addition, because of the high susceptibility to infection, we are now going to have to go with no outside food or drink for her at all, along with no flowers or plants. In other words, please don't bring her anything organic at all... to eat or drink or to have in her room.
And as usual, no, no, no visits with even a remote possiblity of direct or indirect exposure to illness...! Our job now is to keep her from getting sick with anything (and keep her blood numbers right) until she can have a bone marrow transplant.
The transplant donor search process has begun through the search coordinator on her medical team. It turns out that none of her family who have been tested are matches, however the possibility of an unrelated match seems pretty strong, in part because there are many volunteers of a Scandinavian heritage.
The timing for a transplant is not yet clear and that is being discussed and decided. There may be another round of chemo first or, if a viable donor is available, it may be done soon or even right away. We'll let you know as soon as we know anything more on that.
We'll probably be updating these pages every other or every few days instead of every day as right now there's not a lot of new information on a daily basis. She's just following along with the process and it's going very well. Of course any big news we'll post right away!
Thanks again to everyone!
Marcia's Family
Sunday, August 9, 2009
Marcia's news for Sunday August 9th
Hello Again Everyone!
Marcia has now completed the second, longer course of chemo. She continues to feel pretty well however she is very tired and, as we said in a previous entry, she is very susceptible to infection now. She still wants visitors however those "rules" we listed in an earlier entry and that we'll repeat at the bottom here, still apply.
The very good news is that her numbers continue to improve and go where she needs them to go. And so far she is having very few of the "big" chemo side effects.
We will know more tomorrow about the status of a transplant and of course we'll let you know what we find out.
Thanks again for all your great interest, concern and help!
Marcia's Family
The Marcia Visit "Rules"
~ No flowers or plants
~ No fresh fruit or veggies
~ and, worst of all, no more hugs and kisses
~ Please use the hand sanitizer mounted on the walls in the hall before coming into the room
~ Please, please, please if you are sick, have been around someone who is sick, think you might have been exposed to something or are getting sick.... call her, but do not come to visit!
~ Because she is more tired please limit your visit to no more than an hour.
Marcia has now completed the second, longer course of chemo. She continues to feel pretty well however she is very tired and, as we said in a previous entry, she is very susceptible to infection now. She still wants visitors however those "rules" we listed in an earlier entry and that we'll repeat at the bottom here, still apply.
The very good news is that her numbers continue to improve and go where she needs them to go. And so far she is having very few of the "big" chemo side effects.
We will know more tomorrow about the status of a transplant and of course we'll let you know what we find out.
Thanks again for all your great interest, concern and help!
Marcia's Family
The Marcia Visit "Rules"
~ No flowers or plants
~ No fresh fruit or veggies
~ and, worst of all, no more hugs and kisses
~ Please use the hand sanitizer mounted on the walls in the hall before coming into the room
~ Please, please, please if you are sick, have been around someone who is sick, think you might have been exposed to something or are getting sick.... call her, but do not come to visit!
~ Because she is more tired please limit your visit to no more than an hour.
Wednesday, August 5, 2009
Bone Marrow Donation - Myths and Facts
BONE MARROW DONATION – MYTHS AND FACTS
MYTH:
The bone marrow donation procedure is painful.
FACT:
General or regional anesthesia is always used for this procedure. Donors feel no needle injections and no pain during marrow donation. Soreness usually disappears within a few days to a week.
MYTH:
All bone marrow donations involve surgery.
FACT:
The majority of donations do not involve surgery. The patient's doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. If marrow is requested, it is a surgical procedure, usually outpatient.
MYTH:
The surgery is a spinal tap.
FACT:
Marrow is taken from the back of the hip bone, not the spine.
MYTH:
Pieces of bone are removed from the donor.
FACT:
Pieces of bone are not removed from the donor in either type of donation.
A PBSC donation involves taking the drug filgrastim for five days leading up to donation in order to increase the donor's needed blood-forming cells. On the fifth day, blood is taken from the donor through one arm, passed through a machine that separates out the blood-forming cells, and returned through the donor's other arm.
In marrow donation, no pieces of bone are taken; only the liquid marrow found inside the bones is needed to save the patient's life.
MYTH:
Patients Find Matches within their own family.
FACT:
Only about 25% of patients find matches within their families. The majority of patients must rely on non-related donors for a match.
MYTH:
There are enough Donors on the Registry.
FACT:
Only 2 out of 10 donors find a match. People of color have a particularly difficult time finding matches.
MYTH:
Donating bone marrow is dangerous and weakens the donor.
FACT:
Though no medical procedure is without risk, there are rarely any long-term effects from donating. Only five percent or less of a donor's marrow is needed to save a life. After donation, the body replaces the donated marrow within four to six weeks.
MYTH:
Patients Find Matches within their own family.
FACT:
Only about 25% of patients find matches within their families. The majority of patients must rely on non-related donors for a match.
MYTH:
There are enough Donors on the Registry.
FACT:
Only 2 out of 10 donors find a match. People of color have a particularly difficult time finding matches.
MYTH:
Donating bone marrow is dangerous and weakens the donor.
FACT:
Though no medical procedure is without risk, there are rarely any long-term effects from donating. Only five percent or less of a donor's marrow is needed to save a life. After donation, the body replaces the donated marrow within four to six weeks.
All donors are carefully screened before they donate to ensure they are healthy and the procedure is safe for them. They also educate donors, answers questions every step of the way and follows up with donors after donation.
MYTH:
Bone marrow donation involves a lengthy recovery process.
FACT:
Due to taking the drug filgrastim, PBSC donors may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue in the five days leading up to donation. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal.
MYTH:
Bone marrow donation involves a lengthy recovery process.
FACT:
Due to taking the drug filgrastim, PBSC donors may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue in the five days leading up to donation. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal.
Marrow donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking.
Marrow donors can expect to be back to work, school and other activities within one to seven days. The average time for all symptoms to disappear is 21 days.
MYTH:
Donors have to pay for the donation procedure.
FACT:
Donors never pay for donating. All medical costs are paid by the patient's medical insurance or by the patient, sometimes with Be The Match Foundation (tm) assistance. Donors are reimbursed for travel costs, and may be reimbursed other costs on a case-by-case basis.
MYTH:
Donors have to pay for the donation procedure.
FACT:
Donors never pay for donating. All medical costs are paid by the patient's medical insurance or by the patient, sometimes with Be The Match Foundation (tm) assistance. Donors are reimbursed for travel costs, and may be reimbursed other costs on a case-by-case basis.
From Puget Sound Blood Bank - thank you
Marcia's News for Wednesday August 5th
Hello Everyone!
Marcia's blood count numbers continue to improve and she still feels well enough for visitors however there are some new "rules" for visiting. In order to protect her from any sort of infection or illness as she is now very susceptible, her doctors ask that:
~ No flowers or plants
~ No fresh fruit or veggies
~ and, worst of all, no more hugs and kisses
~Please use the hand sanitizer mounted on the walls in the hallways before coming into the room
~ Please, please, please if you are sick, have been around someone who is sick, think you might have been exposed to something or are getting sick.... call her, but do not come to visit!
Lastly, because she is more tired lately, please limit your visit to no more than an hour so that she can get some rest. This busy social life can be exhausting.... ;o)
Marcia's blood count numbers continue to improve and she still feels well enough for visitors however there are some new "rules" for visiting. In order to protect her from any sort of infection or illness as she is now very susceptible, her doctors ask that:
~ No flowers or plants
~ No fresh fruit or veggies
~ and, worst of all, no more hugs and kisses
~Please use the hand sanitizer mounted on the walls in the hallways before coming into the room
~ Please, please, please if you are sick, have been around someone who is sick, think you might have been exposed to something or are getting sick.... call her, but do not come to visit!
Lastly, because she is more tired lately, please limit your visit to no more than an hour so that she can get some rest. This busy social life can be exhausting.... ;o)
THE BONE MARROW DONATION PROCESS
The Bone Marrow Transplant Testing and Donor Process
“Every year, thousands of adults and children need bone marrow transplants — a procedure which may be their only chance for survival. Although some patients with leukemia or other cancers have a genetically matched family member who can donate, about 70 percent do not. These patients' lives depend on finding an unrelated individual with a compatible tissue type, often within their own ethnic group, who is willing to donate marrow for them.”
Puget Sound Blood Center web-site ~ Donating Bone Marrow
A huge thanks to Sarah Schnack at the Puget Sound Blood Center for taking the time to help with the following information!! She is at 1-800-366-2831 Extension 1897 or 206/292-1897 and you can call her for more information.
There are at least three ways you can be tested as a bone marrow donor. To volunteer you must be between the ages of 18 and 60 years old and in good health. The testing is looking for a human leukocyte antigen (HLA) match, which is a tissue type match that does not have anything to do with blood types, as a blood donation would. Please be aware that, unless you are of the same nationality background – Norwegian – the odds of your being a non-related match for her are very slim. There is more information about the process and what a match really means on any of the web-sites listed here or on the National Marrow Donor Program web-site http://www.marrow.org/.
The initial testing process involves nothing more than completing the donor forms – walk-in or on line - and having a cheek swab done. No blood draw! If and when you are a match for Marcia or for someone else, then there will be blood work and the marrow harvesting process. For more information on the entire process see either the national or Puget Sound web-sites. I have copied the content from the "Bone Marrow Donation Myths and Facts" informational sheet from Puget Sound Blood Bank into another entry as I think it's helpful too.
For a non-related person who wants to be tested as a bone marrow donor, the quickest and easiest way to do that here in western Washington is to go in to any Puget Sound Blood Center and sign up for the National Bone Marrow Donor list. For locations and information see http://www.psbc.org/programs/marrow.htm They are the donor center for the National Marrow Program for Washington and Alaska.
If you would like to be tested specifically for Marcia by going into a Puget Sound Blood Bank, be sure to write on the form or attach a sticky note with her name onto the form. Sarah then will be sure to expedite the test on her behalf. And remember that even when designating your test for specifically for Marcia, this process will place you on the National Registry.
You can also go through the process on-line with the National Marrow Donor Program at http://www.marrow.org/. You will fill out the on-line form and be sent a swab kit to complete and return. This will also place you on the national registry as the Blood Bank walk-in process does. It's just another way to go about it.
If you use either of these National Registry processes, please be aware!...
Once you have completed the registry form and had the swab tested you will go on to the national registry for everyone. There are about 6,000 patients a day searching this registry for a match, so if you do not intend to be available for them, this may not be the best way to go as you could get someone’s hopes way up if they find you as a match and then hugely disappoint them if you decline to complete the process. There is no way to participate in the national registry specifically for only Marcia… you will go on to the national list, although you can of course decline a request that comes from being a match for someone else. One of the registry information pieces says that “Volunteers should be committed to helping any patient”…
In order to be tested specifically for Marcia only and not use the national registry donor process, you can contact the Kashi Clinical Laboratories at http://www.bonemarrowtest.com/ or 1-877-527-4452 to order a cheek swab kit in the mail which you will then complete and return to them for the testing. This costs about $175.00 for their standard kit or $375.00 for a STAT Kit which offers the fastest turnaround time of 2 to 4 working days to obtain your results. The results will then be forwarded to Marcia’s healthcare team.
We realize that this is a lot of information however we are receiving so many inquires about how to be tested to donate that we wanted to take the time to get it right. Perhaps some of you will be inspired to become potential donors for any of those folks who are waiting for just the right match. You just might be the answer to someone's prayers!
“Every year, thousands of adults and children need bone marrow transplants — a procedure which may be their only chance for survival. Although some patients with leukemia or other cancers have a genetically matched family member who can donate, about 70 percent do not. These patients' lives depend on finding an unrelated individual with a compatible tissue type, often within their own ethnic group, who is willing to donate marrow for them.”
Puget Sound Blood Center web-site ~ Donating Bone Marrow
A huge thanks to Sarah Schnack at the Puget Sound Blood Center for taking the time to help with the following information!! She is at 1-800-366-2831 Extension 1897 or 206/292-1897 and you can call her for more information.
There are at least three ways you can be tested as a bone marrow donor. To volunteer you must be between the ages of 18 and 60 years old and in good health. The testing is looking for a human leukocyte antigen (HLA) match, which is a tissue type match that does not have anything to do with blood types, as a blood donation would. Please be aware that, unless you are of the same nationality background – Norwegian – the odds of your being a non-related match for her are very slim. There is more information about the process and what a match really means on any of the web-sites listed here or on the National Marrow Donor Program web-site http://www.marrow.org/.
The initial testing process involves nothing more than completing the donor forms – walk-in or on line - and having a cheek swab done. No blood draw! If and when you are a match for Marcia or for someone else, then there will be blood work and the marrow harvesting process. For more information on the entire process see either the national or Puget Sound web-sites. I have copied the content from the "Bone Marrow Donation Myths and Facts" informational sheet from Puget Sound Blood Bank into another entry as I think it's helpful too.
For a non-related person who wants to be tested as a bone marrow donor, the quickest and easiest way to do that here in western Washington is to go in to any Puget Sound Blood Center and sign up for the National Bone Marrow Donor list. For locations and information see http://www.psbc.org/programs/marrow.htm They are the donor center for the National Marrow Program for Washington and Alaska.
If you would like to be tested specifically for Marcia by going into a Puget Sound Blood Bank, be sure to write on the form or attach a sticky note with her name onto the form. Sarah then will be sure to expedite the test on her behalf. And remember that even when designating your test for specifically for Marcia, this process will place you on the National Registry.
You can also go through the process on-line with the National Marrow Donor Program at http://www.marrow.org/. You will fill out the on-line form and be sent a swab kit to complete and return. This will also place you on the national registry as the Blood Bank walk-in process does. It's just another way to go about it.
If you use either of these National Registry processes, please be aware!...
Once you have completed the registry form and had the swab tested you will go on to the national registry for everyone. There are about 6,000 patients a day searching this registry for a match, so if you do not intend to be available for them, this may not be the best way to go as you could get someone’s hopes way up if they find you as a match and then hugely disappoint them if you decline to complete the process. There is no way to participate in the national registry specifically for only Marcia… you will go on to the national list, although you can of course decline a request that comes from being a match for someone else. One of the registry information pieces says that “Volunteers should be committed to helping any patient”…
In order to be tested specifically for Marcia only and not use the national registry donor process, you can contact the Kashi Clinical Laboratories at http://www.bonemarrowtest.com/ or 1-877-527-4452 to order a cheek swab kit in the mail which you will then complete and return to them for the testing. This costs about $175.00 for their standard kit or $375.00 for a STAT Kit which offers the fastest turnaround time of 2 to 4 working days to obtain your results. The results will then be forwarded to Marcia’s healthcare team.
We realize that this is a lot of information however we are receiving so many inquires about how to be tested to donate that we wanted to take the time to get it right. Perhaps some of you will be inspired to become potential donors for any of those folks who are waiting for just the right match. You just might be the answer to someone's prayers!
Tuesday, August 4, 2009
Marcia's News for Tuesday August 4th
Hello Everyone!
Good News!
The doctors tell us that Marcia's blood count numbers have begun to improve! She continues to tolerate the chemo well however her doctors have warned that some of the side-effects do occur after chemo is completed. Maybe she'll be one of those lucky ones who have very few of them!
Last night the entire family gathered in her room for a visit and a fried chicken dinner put together by Tina and Shawna. It was fun for everyone and very uplifting for Marcia to have her entire immediate family all together. There is no somber "hospital mood" in good old room 434, that's for sure, which seems to be a good and positive approach so long as she is feeling well enough to tolerate it. I'm not sure Northwest has seen quite this kind of activity before, but they seem perfectly happy to step over kids on the floor playing video games and adults chewing on a drumstick to take her vitals. We appreciate their great attitudes very much!
We have been getting lots of inquiries about the possibility of becoming a donor when Marcia gets to the point of a bone marrow transplant. We will be posting an entry tomorrow with resources on how to do that for those who are interested. Once her blood count numbers come into the right range and hold there long enough, that will be the next step in her recovery so we want to have everything positioned for a "go" when it occurs.
She remains in "visitable" mode and has enjoyed all of your messages and visits tremendously.
Again, thanks to everyone for your good thoughts and wishes and prayers!
Marcia's family
Good News!
The doctors tell us that Marcia's blood count numbers have begun to improve! She continues to tolerate the chemo well however her doctors have warned that some of the side-effects do occur after chemo is completed. Maybe she'll be one of those lucky ones who have very few of them!
Last night the entire family gathered in her room for a visit and a fried chicken dinner put together by Tina and Shawna. It was fun for everyone and very uplifting for Marcia to have her entire immediate family all together. There is no somber "hospital mood" in good old room 434, that's for sure, which seems to be a good and positive approach so long as she is feeling well enough to tolerate it. I'm not sure Northwest has seen quite this kind of activity before, but they seem perfectly happy to step over kids on the floor playing video games and adults chewing on a drumstick to take her vitals. We appreciate their great attitudes very much!
We have been getting lots of inquiries about the possibility of becoming a donor when Marcia gets to the point of a bone marrow transplant. We will be posting an entry tomorrow with resources on how to do that for those who are interested. Once her blood count numbers come into the right range and hold there long enough, that will be the next step in her recovery so we want to have everything positioned for a "go" when it occurs.
She remains in "visitable" mode and has enjoyed all of your messages and visits tremendously.
Again, thanks to everyone for your good thoughts and wishes and prayers!
Marcia's family
Monday, August 3, 2009
Marcia's News for Monday August 3rd
Hello and Happy Monday!
Marcia has now completed 3 days of one of the two types of chemo she is receiving and has a few more days to go on the 7 day one. So far she is doing great and is still feeling well. She continues to take the anti-nausea medication but has no other side-effects so far. She still wants company and still loves those caramel frappachinos!
Marcia and Pat's foster daughter Linda got into town from Alaska yesterday for a week's visit and the family is enjoying having her here for a mini-family reunion.
Thanks all!
Marcia's Family
Marcia has now completed 3 days of one of the two types of chemo she is receiving and has a few more days to go on the 7 day one. So far she is doing great and is still feeling well. She continues to take the anti-nausea medication but has no other side-effects so far. She still wants company and still loves those caramel frappachinos!
Marcia and Pat's foster daughter Linda got into town from Alaska yesterday for a week's visit and the family is enjoying having her here for a mini-family reunion.
Thanks all!
Marcia's Family
Saturday, August 1, 2009
Marcia's News for Saturday August 1st
Hello again.
Marcia tells us she is still feeling well enough for visitors however please be aware that she is taking some pretty strong anti-nausea medication which may make her a bit drowsy. She says she is still happy to have people come to see her. Remember that it's room 434 now.
She says that although she is still on the same floor, changing rooms has also changed some of her caregivers because they are assigned according to certain rooms/areas. She has been really well taken care of there at Northwest! She likes all her "old" caregivers and is looking forward to getting to know her new ones. One who won't be working with her now brought his replacement into her room to introduce her and tell him what a great patient and wonderful lady she is and to take good care of her! Very nice.
Thanks again to everyone. More tomorrow.
Marcia's family
Marcia tells us she is still feeling well enough for visitors however please be aware that she is taking some pretty strong anti-nausea medication which may make her a bit drowsy. She says she is still happy to have people come to see her. Remember that it's room 434 now.
She says that although she is still on the same floor, changing rooms has also changed some of her caregivers because they are assigned according to certain rooms/areas. She has been really well taken care of there at Northwest! She likes all her "old" caregivers and is looking forward to getting to know her new ones. One who won't be working with her now brought his replacement into her room to introduce her and tell him what a great patient and wonderful lady she is and to take good care of her! Very nice.
Thanks again to everyone. More tomorrow.
Marcia's family
Friday, July 31, 2009
Marcia's News for Friday July 31st
Hello again everyone! Thanks so much for your wonderful messages!
Two new items for today.
First the Chemo port was placed and the chemo has begun. She is still feeling fine and should continue to do so at least for several more days before she begins to experience any side-effects. She can have visitors and would love to see you. An iced caramel frappachino would be a lovely thing to bring her if you'd like... ;o)
Secondly, she was moved to a different room: room 434, which is bigger and will accommodate more seating and a big recliner chair. It also has a different orientation for the bed so that she can have her curtains open without being in the hot sun during the day. All much better for entertaining! :0)
More tomorrow! Thanks for your continued love, support and prayers.
Marcia's family
Two new items for today.
First the Chemo port was placed and the chemo has begun. She is still feeling fine and should continue to do so at least for several more days before she begins to experience any side-effects. She can have visitors and would love to see you. An iced caramel frappachino would be a lovely thing to bring her if you'd like... ;o)
Secondly, she was moved to a different room: room 434, which is bigger and will accommodate more seating and a big recliner chair. It also has a different orientation for the bed so that she can have her curtains open without being in the hot sun during the day. All much better for entertaining! :0)
More tomorrow! Thanks for your continued love, support and prayers.
Marcia's family
Thursday, July 30, 2009
About Marcia
Hello Scrapbook Pad Fans and Marcia's many many friends!
As some of you know, recently Marcia has been dealing with some pretty significant health challenges. Because there are just not enough hours in the day to manage all your wonderful and sincere telephone calls and inquiries into her current status we have decided to start this page for and about her so that you can get all of her current news whenever you like.
In February Marcia went to the emergency room for some severe leg swelling and bruising. At that time it was discovered that her blood counts were way off and she was - after a lot more testing - initially diagnosed with Chronic Myelogenous Leukemia. She began receiving treatment through oral medication. She improved so much and felt well enough to take a month long trip to Denmark, Norway and Paris with her sister and cousin in May. She did well and had a good time on her trip however by the time she returned home the medication was no longer effective.
There were, of course, more doctor visits and more diagnostic work. She is being seen at Fred Hutchinson and the Seattle Cancer Care Alliance and they are working closely with her regular doctors to find a solution. So far, even with all of that clinical experience combined, there are some unusual anomalies with her situation and the exact diagnosis has become less certain. It is definitely a form of Leukemia, however the exact type is not known and it's proving to be pretty aggressive. So far an effective course of treatment isn't clear.
Another course of oral medication was tried however it did not work as well as the first round initially had. On July 7th she was admitted to Northwest Hospital for a pretty substantial round of chemotherapy which unfortunately did not have the desired effect. She has been at Northwest since then, during the course of that chemo.
Today she is undergoing testing in preparation for another very aggressive course of different chemotherapy. She will be having a chemo port surgically installed on Friday or Saturday and the chemo itself will begin shortly after that, perhaps as soon as Sunday. She has been told that she will remain in the hospital for at least another month for this course of treatment.
This weekend, August 1st and 2nd please feel free to visit visit visit or call Marcia at Northwest Hospital, 206/364-0500, room 440 (for a few more days - then she will be moving to another room sometime next week).
Beginning on Monday, August 3rd the doctors and family are requesting that visitors please call her before coming to visit because she may be somewhat ill and because of the high risk of infection and her current vulnerability to it. We are also requesting that phone calls to her or to us about her status be kept to a minimum because - although we understand that you all love her and are concerned about her - there are not enough resources to individually keep everyone updated and we are going to be focusing all of our time, energy and effort on her, on taking great care of her family, and on her wonderful pride and joy - The Scrapbook Pad!
Thank you for your loving care and concern. Please keep checking back for updates and do drop into the store to shop or chat or just cool off. We know she loves you all and really appreciates your concern and your prayers.
We hope to update this site with a daily report and we'll try to let you know if visits are a good idea on any given day. Feel free to add a comment here for her and/or her family - she has her laptop with her and will be able to see what you post or send.
Thanks again!
The McNulty Family
Marcia & Pat
Tina & Jeff
grandkids Brianna & Justin
Shawna & Chris
grandkids Alexa & Cameron
As some of you know, recently Marcia has been dealing with some pretty significant health challenges. Because there are just not enough hours in the day to manage all your wonderful and sincere telephone calls and inquiries into her current status we have decided to start this page for and about her so that you can get all of her current news whenever you like.
In February Marcia went to the emergency room for some severe leg swelling and bruising. At that time it was discovered that her blood counts were way off and she was - after a lot more testing - initially diagnosed with Chronic Myelogenous Leukemia. She began receiving treatment through oral medication. She improved so much and felt well enough to take a month long trip to Denmark, Norway and Paris with her sister and cousin in May. She did well and had a good time on her trip however by the time she returned home the medication was no longer effective.
There were, of course, more doctor visits and more diagnostic work. She is being seen at Fred Hutchinson and the Seattle Cancer Care Alliance and they are working closely with her regular doctors to find a solution. So far, even with all of that clinical experience combined, there are some unusual anomalies with her situation and the exact diagnosis has become less certain. It is definitely a form of Leukemia, however the exact type is not known and it's proving to be pretty aggressive. So far an effective course of treatment isn't clear.
Another course of oral medication was tried however it did not work as well as the first round initially had. On July 7th she was admitted to Northwest Hospital for a pretty substantial round of chemotherapy which unfortunately did not have the desired effect. She has been at Northwest since then, during the course of that chemo.
Today she is undergoing testing in preparation for another very aggressive course of different chemotherapy. She will be having a chemo port surgically installed on Friday or Saturday and the chemo itself will begin shortly after that, perhaps as soon as Sunday. She has been told that she will remain in the hospital for at least another month for this course of treatment.
This weekend, August 1st and 2nd please feel free to visit visit visit or call Marcia at Northwest Hospital, 206/364-0500, room 440 (for a few more days - then she will be moving to another room sometime next week).
Beginning on Monday, August 3rd the doctors and family are requesting that visitors please call her before coming to visit because she may be somewhat ill and because of the high risk of infection and her current vulnerability to it. We are also requesting that phone calls to her or to us about her status be kept to a minimum because - although we understand that you all love her and are concerned about her - there are not enough resources to individually keep everyone updated and we are going to be focusing all of our time, energy and effort on her, on taking great care of her family, and on her wonderful pride and joy - The Scrapbook Pad!
Thank you for your loving care and concern. Please keep checking back for updates and do drop into the store to shop or chat or just cool off. We know she loves you all and really appreciates your concern and your prayers.
We hope to update this site with a daily report and we'll try to let you know if visits are a good idea on any given day. Feel free to add a comment here for her and/or her family - she has her laptop with her and will be able to see what you post or send.
Thanks again!
The McNulty Family
Marcia & Pat
Tina & Jeff
grandkids Brianna & Justin
Shawna & Chris
grandkids Alexa & Cameron
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