All the news that's fit to print, or everything you ever wanted to know about Margies leukemia and upcoming bone marrow transplant.

Ok, the observant of you likely noticed that the side bar over there> contains a bunch of links to information about
this "mini" transplant. Well, it aint so itsy-bitsy, but it's a step toward mom tellin' leukemia who's boss: Her, that's who!

Now, I can't take one ounce of credit for all of the factoids, information, links and intellectual observations on this information. I must let you know that my tireless, enthusiastic, willing and down right more-than-happy-to-do-this sister in law, Susie has spent hours and hours researching, compiling, faxing, mailing, phone-calling and digging on this subject. So, I'm a mere messenger, she deserves the kudos.

So, I'll begin by letting you know what's a comin' for mom:
__________________________________________________________________________________________________________________________

Acute myeloid leukemia (AML) is a cancer of the bone marrow and blood characterized by the rapid, uncontrolled growth of immature white blood cells known as myelocytes. The disease is more common in adults than in children; average age at diagnosis is more than 65 years.

The following is quoted from Dr. Frederick Appelbaum of the Fred Hutchinson center in Seattle. It's an excellent explanation
of how our blood system works and what happens when something goes wrong, as in leukemia:

"In our peripheral blood we have red cells, white cells and platelets, red cells that carry oxygen from the lungs to organs, white cells that fight infection, and platelets that keep us from bleeding. These cells are very short lived, lasting several months for red cells, several days for platelets and sometimes several hours for white cells, and so they have to continuously be replenished. That job of making new blood cells occurs in the bone marrow. The bone marrow stem cells have the responsibility for dividing and maturing. So they start out as baby cells and then they have to become more mature cells and become adult cells as they go into the peripheral blood, over the course of days to weeks."

"In acute leukemia, two things happen. Once thing that happens is that in one of these stem cells, a genetic event occurs. And by "genetic" we mean a mutation that you're not born with, but a mutation that comes about because the DNA either makes a mistake or gets damaged, that causes a cell to no longer be capable of maturing. So its ability to grow up and go from a teenager to an adult is inhibited. A second mutation causes the cells to reproduce more rapidly. This gives rise to cells that we call blasts, very young blood cells that aren't mature and therefore can't function, but grow abnormally fast and replace the normal bone marrow."

"This appears to occur in a single cell, so we call the disease clonal. That single cell and all of its children, or progeny, take over the bone marrow and cause the bone marrow to no longer produce its normal cells. Because the bone marrow is no longer producing its normal cells, you get the symptoms of leukemia, which include a lack of red cells, and so people become anemic and fatigued; a lack of white cells, and so 30% to 40% of patients will present with very low white counts and infection; and lack of platelets, and so at least a third of patients will have bleeding at the time of diagnosis. These are the major threats to patients with acute leukemia, that is, infection and bleeding. If we don't do anything, the disease unfortunately is often rapidly fatal, within one to two months. But with newer therapies patients can frequently enter complete remissions and often be cured."

So, this leads us to:

"MINI Transplant"
Fairly recently, the "mini transplant" option was developed (by Dr. Rainier Storb of Hutchinson in Seattle) This is like a conventional transplant exept that low-dose chemotherapy and radiation is used, rather than high doses, before transplanting
stem cells. This type of transplant is effective in some cases, without all the side effects of a conventional transplant.

Step 1: Planning
The first step is planning ahead. During this step you will be making plans for your stay in Seattle (moving there temporarily)
making financial arrangements and deciding who will be your primary caregiver.

Step 2: First visit
The next step is your fist visit with us, which includes meeting the members of your medical team, undergoing a medical evaluation, ( this goes on for two weeks) having several conferences and settling into your temporary home in Seattle.

Step 3: Conditioning
During the conditioning stage, you will receive conditioning therapy to prepare for the transplant. Conditioning is given before the actual transplant. This prepares your bone marrow to receive the transplant. Traditionally, this is either high-dose
chemotherapy alone or in combination with radiation therapy. In a mini transplant, we use lower-dose medication and radiation.
You will be given medication to prevent and relieve symptoms caused by the conditioning therapy. These include a sore mouth (oral mucositis), and you weill want to make sure you rinse your mouth frequently to relieve the discomfort. The conditioning does cause hair loss. Other possible side effects are nausea, vomiting, diarrhea and fever. You will want to make sure to balance rest and activity to help maintain your energy level.
The conditioning may be done entierely as an inpatient, entirely as outpatient or some combination of the two.

Step 4: Transplant
During the transplant, you will receive an infusion of stem cells through a central line. This infusion is usually a brief and uncomplicated procedure, but it is a significant event. Many families choose to celebrate the transplant day as a special occasion.

Step 5: Waiting for engraftment
Engraftment means that the bone marrow or stem cells you received during the transplant are growing and beginning to produce new blood cells. Signs of engraftment usually are seen about 10 to 28 days after the transplant.
Often the first sign is a rising white blood cell count. Your blood cell counts will be moniitored to watch for this.
You will be very susceptible to infections during this time because of lack of white blood cells. You will receive transfusions of blood cells or platelets if needed to boost your counts.
You also will be monitored closely for any side effects or complications of the treatment. Possible complications include viral, bacterial, and fungal infections; pneumonia; veno-occlusive disease (VOD) of the liver and other organ failure. The risk of organ failure may be greater in patients who already have had intensive chemotherapy or radiation therapy or both before coming for a transplant.

Step 6: Recovery after engraftment
After your hospital stay, if you have one, you will continue to recover as an outpatient. You will need to live within 15 to 30 minutes driving distance of the hospital during this time. Your designated caregiveer will be caring for you once your are released from the hospital.

Step 7: Long term follow up
Once you leave SCCA and return home, you will be under the care of your doctor. You should report any new symptoms to your doctor and the SCCA staff. Patients generally return to SCCa one year after their transplant for an evaluation.

The donor:

The donor may be a family member (yay, Cathy!!) or her or she may be an unrelated donor whose tissue type closely matches yours.
After the week period that comprises of an extensive medical evaluation (as stated in step 1) as well as 3 days of evaluation for the donor, the procedures for the transplant proceeds as follows:
The bone marrow harvest is done in the operating room, whle the donor is asleep under anesthesia, on the day of the transplant. If your donor is a family member who comes with you to Seattle. The doctors collect bone marrow from the hip using large needles. The procedure takes about two hours. Most donors do not need to stay at the hospital overnight.

_________________________________________________________________________________________________________________________
So, this is likely more information than any of you expected to see and margie wants this site to be "uplifting" and that you can have "fun". (I googled leukemia, blood and transplants for jokes, but uh, sorry, nothing funny there)
So please don't forget to add comments, a thought for the day or any joke or funny anecdote you'd like to share. This is Margies site and I know she'll look forward to hearing from all of you.

Thanks and all my best,
Kathleen

Welcome to margies wonderful life!

Since I've been sending out "margie update" emails every so often to keep friends and family abreast of what's happening, I decided to just go ahead and make the jump to the next logical step: margie with her own website!

Much of the information following will be the archives of the emails that have already been sent out. I'm publishing these for the benefit of readers that have not seen this information. So, if you've read it, skip it and everything following this first post will be fresh and new: downright squeaky-new updates on Margies Wonderful Life!

Welcome, and as always, let me know if you need any more information or if you have anything (comments) you'd like to share, click on the comments link and express yourself.

All my best,
Kathleen


June 21, 2006 Kathleen wrote to friends:
Hi- My mom's in the hospital tonight- she went into her doc today because of shortness of breath, fatigue and she's got these bruises on her little body that are getting bigger (like 75% of her leg for example) We just thought she was tired due to the anniversary party they just had.

Well, her blood platelet count that should be around 100K was down to 6K so they admitted her and she's getting a blood transfusion tonight and they're doing a bone marrow biopsy tomorrow.
The biopsy results won't be in till sunday or monday, so plenty of waiting to do and she won't know if she can go home to wait there because they'll have to decide if her platelet count is up or not in order to send her home.
Apparantly, cound be one of two things:
-some kind of infection in her body that is attacking the blood or possibly leukemia in which case she'd be starting chemo asap. Won't know any results until the bone marrow biopsy come back.

Needless to say, am emailing my wonderful friends for their prayers- she sounded good on the phone- said "We've all had bad things happen to us, we just deal with it as it comes, and go on"
My scottish great-grandmother, Eve Robertson would be so proud: stiff upper lip and all...


June 23, 2006 Kathleen wrote:

I wanted to update you all with what is happening: It seems that the bone marrow biopsy results that will be in on monday are really determining the extent of what is happening, that is to say, she's been diagnosed with Adult Acute Myloid Leukemia.

The biopsy will indicate to what extent and if it has spread to her body. She's scheduled to start chemo on monday and will be there 7 days. (they're to surgically install a catheter for that on monday morning)
She's still at the hospital this morning, has had 4 blood transfusions since they checked her in on wednesday, but may be released today if her blood hemagloban stay's high enough to satisfy her doc so she can leave on monday. She's at a disadvantage due to the fact that they live on the island and can't just "zip" back tot he hospital if she starts feeling badly and would need to get back asap.

She sounds pretty darn good. Has plugged right back into "nurse Margie" mentality which is probubly benefiting her as she is writing lists feverishly, has a "plan" and know quite a few people at the hospital (she worked there at one point)She knows where to find things, changed her own sheets yesterday and knows who to ask to get things. So, she doesn't have cancer- she's just back at work! I jest...

Love to you all,
Kathleen



July 4, 2006 Margie Update email:
Hi Everyone,
I just wanted to update everyone on my mom's condition:
She'll be done with chemotherapy late today, after 7 day's of a 24 hour drip. She also receives blood transfusions and platelets as necessary during the day or nite. Luckily, the medications that are admininstered now for counteracting the bad effects of chemo are very good, and she has not had to endure the nausea that I think is most associated with chemo.

She'll be staying in the hospital until 7/29. That's the target date that the doctor has given her, although things change all of the time and will change I'm sure, based on her condition and what they find in her blood work as it progresses.

In seven days from now, she'll have a second bone marrow biopsy done to determine if the cancer is gone. If so, she's in remission bust must still be monitored heavily, as the chemo has killed her white blood cells that fight infection, and they must "re-grow" in her system. So, she'll stay put in the hopsital as the staff there has to keep her blood values heavily monitored and make sure that her platelet count is coming up and her red and white blood cells are acting as they should once they come back.

Thank you so much for her siblings that have alredy gotten their blood tests to determine compatability as a bone marrow donor! It will be fantastic if we know in advance the "candidate" that has the perfect match ahead of time, so that if a a transplant is what is best, there will be no waiting and wondering. The wonderful thing is, the lucky winner will have a trip to Seattle, paid for by mom's insurance and the transplant procedure for the donor is not a terrible one and only a couple of days of recovery. Thank you God for all eight siblings!

From the point of view as her daughter, I can say that last week was all about the adrenaline of her being in the hospital, the diagnosis and her list writing and calendaring this next "project".
I would venture to say that at this point, it is hitting hard what is happening to her and she needs to focus on resting, grieving, praying and taking care of herself mentally. She's had some anxiety that's sent her heart racing, but they've done an ekg and determined that the chemo has not done any permanant damage to her heart (as that can be a side effect) and these are essentially panic attacks.

I can only reflect on what it was like for me when I recieved Noah's diagnosis and went through a similar process of grief. I believe that she most needs love, supportive words and letters, knowing that we all care and are praying for her. Phone calls are wiping her out at this point, as she's having to retell the "story" and that's exhausting. Her spirits are ok, but she's understandably wiped out.

Just the schedule in her room what with the nurses, doctors, blood draws, discussing results, meals delivered, visits, blood transfusions, platelet transfusions, checking IV lines, checking fluid levels and IV's. It's full time and it goes on day and night.
When she does have visitors, she does not know how not to hostess and that is not conserving her energy.

So my apologies if this email sounds preachy- just wanted to update and let everyone know what's happening.
Love to all,
Kathleen


July 17, 2006 Kathleen wrote:
Hola from Mexico!
We'll be back in San Francisco this thursday but wanted to update all of you on Margie- The news could not be better!
Her pathology results on friday showed that the chemo "destroyed" the cancer cells in her blood!
Of course, this journey is not over, but this is the best news that she can have! The doc says this week is about recovery meaning now whe grows back red and white blood cells as well as platelets. As long as she does not need additional units of either, it will be a good week and she should be on schedule to go home by the 27 or so of July.

She'll still have plenty of decisions to make about how she'll proceed in the way of a bone marrow transplant, and some other things that the hospital will be her second home for a while. Must make this short as my pesos are running out rapido...
I'll send another update when I'm back.
Continue to keep her in your thoughts and prayers. She still needs tons of rest and will continue to to recover fully. Thanks for all of your emails with questions and well wishes-
Love to you all,
Kathleen


July 21, 2006 Kathleen wrote:
Hello everyone,
Back from Mexico and just got off the phone with my mom-
As reported on friday, the first round of chemo has successfully elminiated the cancer. (unfortunately, because it's an aggressive Leukemia, they have to continue to "go after it")

She's scheduled to go home sometime this tuesday and then a week or two later, she'll begin 5 more cycles of chemo. Essentially, she'll check intothe hospital, in-patient, have 5 days of more intensive chemo, then when that's over, she'll be hter for the "rebuilding" which is to say that the chemo basically eliminates all the blood product, white and red cells and platelets. The rebuilding is where her bone marrow (where blood is made in our bodies) rebuilds her blood. (during the rebuilding and all during this ordeal, her immune system is highly susceptible to infection because it has no defenses. So, it's important that she stay away from anything that could expose her to any germs)

After the rebuilding, she'll go home, spend one to two weeks at home then back to the hospital to do it all over again.
We're told that the rebuilding will take longer after each cycle. This is a normal thing that the body does and so later in the process, it cound take up to 2 weeks. This schedule will take her till the end of Dec.
After that, they'll determine if she's officially in remission and then make decisions in regard to a bone marrow transplant.

She sounded pretty upbeat and I told her that it's ok to have a bad day, as she is apt to keep the smile on her face. So, I toldher to take one day and practice having a bad day. That it was ok, and she can allow herself to do that. Luckily, she has a terrific nurse there and she's been able to share some feeling with her. I can only imagine someof the emotional things she must be going through what with her life completely changing and the loss of control that she is experiencing.

She has excellent care as Virginia Mason is one of the leading cancer centers in the country and has an excellent doctor. The medical staff is doing their job well and she'l benefitting not only from their care but also her attitude, lifelong health and mental tenacity.

I'm so lucky that I get to go up to see her and dad next friday for a few days. I'm so looking forward to it as it is most difficult to be this far away.
Thank you all so much for your prayers and loving thoughts,
Kathleen


August 13, 2006 Kathleen wrote:

Mom has been home since July 26, and although there are not many things going on (like the busy environment of the hospital) there are developments. After speaking with her last night, I wanted to share some of the latest:

Mom has a bone marrow match! Her sister Cathy- Congratulations! are in ordeer and I am so thankful that we've crossed this hurdle of finding an appropriate match. Job well done to my grandmother Cicely, without whose determination to have as many children as she could possibly produce, this would not be possible. And, on an interesting side note, it was also determined that Jeanni, Suzy and Joe are all matches to eachother. Hopefully, you will never need that information.

Mom is scheduled for another bone marrow biopsy this monday, August 14th (happy birthday Dad!) and yesterday had a very positive meeting with her oncologist about her blood work, cath and general state of her mendical condition at thispoint.
(For anyone interested, she wore her "pixie" hair as we call it)

The readmission to the hopital has been postponed until after her next meeting with this same doc (DR. Picozzi) wherein he'll be discussing the bone marrow biopsy results from the 14th as well as the possibilities fo changingthe direction of her treatment. So, at this point, wer are speculating that maybe not the 5 rounds of chemo??
The three options that he said he may be discussing with her on the 21st are:
-just doing chemo
-doing bone marrow transplant
-doiing a transplant using her own marrow ( this is also an option as they surgically remove her marrow, essentially "clean" it and then put it back into her body)

Essentially the change of direction is due to the fact that her body reponded well to the chemo thus far andshe's in overall good health. So, she's certainly not cured but for a leukemia patient she gets an A+.

Mom is very happy as this also buys her a little more time at home which is very nice. She's sleeping ok, taking a nap most every afternoon and generally trying to organize the house. After the anniversary party in june, nothing was put away since she was admitted into the hospital in haste and hadn't been home since. So, I know whe is happy getting things re-organized.. She's been very pleased with her home visits from nurse Kate who comes by twice a week and mom has been doing an excellent job keeping her cath line in her chest flushed and infection free.

Susie (Eddie's wife) has sent mom various books on adult leukemia as well as transplants and mom has been getting alot out of the reading she's doing and she'll be a very well informed patient. However, she's also determined that this is reading better suited for the morning as I am sure we can imagine how tht would keep a person up at night if that's what one is reading to go to sleep by! (sweet dreams? hardly)

All for now, so pleased that I am able to share some very good news overall and hope this email finds you all well and happy,
Love, Kathleen


September 15, 2007 Kathleen wrote:

Hello everyone,
As things are settling into a "rountine" for mom, I didn't want to forget about these updates as I know most people want to keep abreast of the latest.

So, mom was in the hospital on Sept. 7 for a week stay so that she could go through another course of chemo. All went as expected, but for the first time she had the experience of "climbing the walls" That first six weeks that she was in the hosp., I'm sure that alot of that was adrenaline driven and the newness of what she was experiencing, so this was a complet change for her and it sounded as if this hospital stay was making her a bit crazy and a lot bored.
She was on the same floor at Virginia Mason in Seattle, so hse was able to see the same staff ther and all went well with her chemo treatment. For these shorter treatments, they sent her hom for the recovery period of her numbers dropping then went into the hopital last friday to get her blood drawn (pixie hair) and levels checked and then saturday (jackie O hair) was there for a blood trans. She'll do the same thing two more times in the next week and then back in the hosp. a week or so after that for the next round of chemo.

So, this seems to be mom and dad's fulltime job for the time being. Going home is nice between as of course, she's more comfortable there and far less germs than the hosp. That said, the doc already said that she'll likely be back with a fever as that's a sign of infection and it's totally expected and treatable. Just a normal side effect.

So, it's a bit of everything's going as planned at this point and no news is good news type of email.
I'll send out an update after the next hospital stay or if there are any changes.
Love to you all,
Kathleen