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.
Sunday, August 9, 2009
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
Subscribe to:
Posts (Atom)