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

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

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

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

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

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

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.

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.

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.

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.
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)

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!

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

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

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