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