Well, this is what she meant to say. It was quite a thing for her to even get up on that stage, she snuck in and out of there in a flash (and in lots of protective clothing), and she forgot some of this. So I asked her to send it to me, and here it is. As she said, "Simply reading the below it doesn't do justice to what I was feeling throbbing thru my heart.....and my soul. Don't know if it will convey that...."
-----
There's a few things I must say. And.....I....have to say them. They simply can't come from anyone else, they need to be in my voice, from me....from MY heart......
Ya know how we always think THIS happens to “OTHER” people….. Well the truth is….it simply doesn't ! It mostly happens to those you least expect it to…..and it’s utterly devastating when it does. After numerous stumbling blocks, I was unbelievably lucky. Fact is, I'm a generic white chick from Northern Europe. I had a number of “possible” Donor’s. What happens if you are ½ Nepalese and ½ Irish ? Or half German & half Nigerian ? You wait…..and you wait, as long as you can, and every year some die….waiting. Even children. Minorities especially exist in a precarious danger zone. Please donate blood, but please go one step further and do the simple cheek swab…..and maybe save someone’s life. PLEASE.
The Research, Knowledge and Care that go into every aspect of a Bone Marrow/Stem Cell Transplant is awesome thing. Not that long ago, I truly would have been a girl in a bubble. Please…..everyone in the room acknowledge what the people from UW Med Center, Fred Hutch & Seattle Cancer Care Alliance do for a living….because they truly are intragal (sp???) parts of miracles on an every day basis. Cheers to them !
I’m not here for me….. I’m truly here for all of you…to Thank You and Honor you. My friends… and those that I don’t even know… that out of the greatness of their hearts, were involved in anything having to do with helping me. It truly does take a Village…..and you have all built my Universe......... For this I truly honor all of you.
From the beginning…not all of you even knew each other : from far different walks of life, as well as dramatically different parts of MY life. My greatest joy has been witnessing the meetings of voices & e-mail addresses, all for the very first time….. and the now the connections that have been forged.
For those that don’t know me, I hope the sheen from my scalp is not blinding you. All of these bands, all of the musicians, are amazingly gentle and kind souls…..as well as phenomenally talented. They themselves are well worth the evening of entertainment without being graciously attached to my name….. I thank them for choosing to take part in this event. Please enjoy the music…and the collective talent !
Namaskar.
Saturday, December 22, 2007
Kristina on KOMO TV in September
Finally got this report loaded on YouTube -- and now we're working on the one from the fundraiser (see next post below).
Thursday, December 20, 2007
Thank Your for a Real Good Time!
There are too many people to thank for the fundraiser last night in Seattle: the folks who put it all together, the bands, the Tractor Tavern, everybody who came ... It was a great night all around, and my guess is that about 100 people came through the doors, maybe more.
Thank you everybody! And if you couldn't make it, why not swing by the donation link right now to give the $20 you would have spent to get in, had you been there?
Kristina even made a brief appearance, and I'll try to get her remarks from her. She had written some stuff but didn't get through all of it. It was a pretty big undertaking just being there.
If anybody has photos they can share, please let me know. Maybe you could post them on a site and send me the link!
In site news, I have updated a couple of links. One is that I have changed the "Days 0-30" link with the "Days 30-100" link, which is called "Early Recovery." I am also working on posting a recent story that KOMO did, but I did get the Seattle PI story from last week up there. I know a few people read that and showed up at the Tractor Tavern Wednesday night, so another round of thanks to them!
On a personal note, I really enjoyed meeting as many people as I did. I'm not much a late-night partier any more, but last night was a pretty magical time.
Thank you everybody! And if you couldn't make it, why not swing by the donation link right now to give the $20 you would have spent to get in, had you been there?
Kristina even made a brief appearance, and I'll try to get her remarks from her. She had written some stuff but didn't get through all of it. It was a pretty big undertaking just being there.
If anybody has photos they can share, please let me know. Maybe you could post them on a site and send me the link!
In site news, I have updated a couple of links. One is that I have changed the "Days 0-30" link with the "Days 30-100" link, which is called "Early Recovery." I am also working on posting a recent story that KOMO did, but I did get the Seattle PI story from last week up there. I know a few people read that and showed up at the Tractor Tavern Wednesday night, so another round of thanks to them!
On a personal note, I really enjoyed meeting as many people as I did. I'm not much a late-night partier any more, but last night was a pretty magical time.
Sunday, December 16, 2007
Read about Kristina in the Seattle Paper
The Seattle P-I has done another story about Kristina, dated Dec. 14. Read it here.
Friday, December 14, 2007
Preliminary News is Good
We're still waiting for confirmation when another test comes in (hopefully this afternoon), but the preliminary results from Kristina's bone marrow biopsy read in part, "No abnormal myleoblasts noted."
Again, that's very preliminary, so stay tuned. There's another test to come which will confirm or clarify, and as soon as we have those results, we'll get them out.
Again, that's very preliminary, so stay tuned. There's another test to come which will confirm or clarify, and as soon as we have those results, we'll get them out.
Tuesday, December 11, 2007
Big Day Today
Okay, folks – it’s time to send big, positive, healing energy. It’s Bone Marrow Biopsy Day.
What is a biopsy? Well, today is the day they will put Kristina under and take a sample from her bone marrow. The purpose is quite simple: to find out if, and how well, the bone marrow transplant worked. It will take a few days, maybe a week, to get all the official results, but there are three basic outcomes:
Best: If there are no “blasts,” that means she’s cured – although the cancer could come back, and on top of that, future forms of cancer are a little more likely due to all the chemo she got. Basically, under this scenario, she continues to recover from all the treatments and keeps an eye out for GVH.
Semi-bad outcome: a few blasts would mean she’s in clinical remission and will still need ongoing maintenance from drugs or chemo.
The worst outcome is a lot of blasts, perhaps even signs that she’s gone all the way to full-blown leukemia, which would require another transplant in the next couple of months.
For updates, like I said, it may be a few days. Also, I will be out of town and away from the Internet until Friday morning. There’s a chance Kristina will log on herself and post something, but she’s trying to figure out how to take things easier.
Speaking of which, she sounds like she’s slowly getting to feel a little better. She had two great caregivers over the weekend, and that went well. She is still a little shaky, gets tired easily, and is being told to take it easier, so she’ll work on that. Her weight and temperature are stable, and her appetite is slowly coming back.
The bummer at this point is that the steroids she is on have altered her blood in such a way as to necessitate insulin shots. She’s quite frustrated by this development, but there is a good chance it’s a temporary situation that will pass when the steroids she’s taking (and the GVH they are fighting) pass.
She continues to tell me that she has run out of words to thank everyone. I encouraged her to log on here directly sometime and post a letter of thanks to all of you.
Meanwhile, there probably won’t be any news here for a few days, so please say a prayer and/or send some energy for the biopsy today.
What is a biopsy? Well, today is the day they will put Kristina under and take a sample from her bone marrow. The purpose is quite simple: to find out if, and how well, the bone marrow transplant worked. It will take a few days, maybe a week, to get all the official results, but there are three basic outcomes:
Best: If there are no “blasts,” that means she’s cured – although the cancer could come back, and on top of that, future forms of cancer are a little more likely due to all the chemo she got. Basically, under this scenario, she continues to recover from all the treatments and keeps an eye out for GVH.
Semi-bad outcome: a few blasts would mean she’s in clinical remission and will still need ongoing maintenance from drugs or chemo.
The worst outcome is a lot of blasts, perhaps even signs that she’s gone all the way to full-blown leukemia, which would require another transplant in the next couple of months.
For updates, like I said, it may be a few days. Also, I will be out of town and away from the Internet until Friday morning. There’s a chance Kristina will log on herself and post something, but she’s trying to figure out how to take things easier.
Speaking of which, she sounds like she’s slowly getting to feel a little better. She had two great caregivers over the weekend, and that went well. She is still a little shaky, gets tired easily, and is being told to take it easier, so she’ll work on that. Her weight and temperature are stable, and her appetite is slowly coming back.
The bummer at this point is that the steroids she is on have altered her blood in such a way as to necessitate insulin shots. She’s quite frustrated by this development, but there is a good chance it’s a temporary situation that will pass when the steroids she’s taking (and the GVH they are fighting) pass.
She continues to tell me that she has run out of words to thank everyone. I encouraged her to log on here directly sometime and post a letter of thanks to all of you.
Meanwhile, there probably won’t be any news here for a few days, so please say a prayer and/or send some energy for the biopsy today.
Saturday, December 8, 2007
We Need Some Help Here!
Hi, folks. We’ll get to the Kristina Update in a second, but right now there is a pressing need: weekend caregivers.
I just spoke to the first non-medical person who volunteered for duty, and she assures me it’s no big deal. You show up at 9 p.m. on Friday or Saturday and stay with Kristina for 24 hours, but you’re not at all stuck in the apartment. She is somewhat mobile.
The food, the medications, everything is all laid out for you and very straightforward. Of course, Kristina is very well-informed and knows exactly what to do. Basically, you make sure she gets her meds three times a day (all pills plus one oil that she puts in her mouth), you check her glucose level once a day (no needles, just a tiny pin prick on her finger), you do laundry, and you follow simple instructions for food handling.
In short, it’s nothing mysterious, nothing scary or threatening – but it is something that is desperately needed. There is a weekend this month that is not covered, and several days in January, as well. Please consider taking this opportunity to help!
Consult this calendar to find available dates, and then contact Kristina at her home. If you don’t have her number or email address, email me (paul@paulgerald.com) and I will forward it along. As of this posting, we need people for Dec. 29 and 30 and Jan. 12, 19, 20, 26 and 27.
Kristina is home and doing pretty well, all things considered. It’s been a whirlwind couple of days transitioning from hospital to home, and she’s pretty worn out. She said Thursday and Friday were “kind of a nosebleed” with all the stuff that had to be taken care of.
She’s having a harder time than she anticipated, mainly with getting around and stuff like standing up from a seated or kneeled-over position. Her eyesight has also been affected, and she has the occasional bout of nausea. She’s a little shaky and says she can’t read her own handwriting.
Still, the blood numbers are good, and the GVH is not too bad. Her biggest complaint seems to be that one of the meds she’s taking – a steroid which is in oil form and has to be sort of sprayed into her mouth – apparently makes everything she eats or drinks taste like the medication. Perhaps related to this, her appetite isn’t much, but last night she had her first real full-night’s sleep she can remember.
Don’t forget the fundraiser on Dec. 19 – invite friends, tell everyone you know, post the flyer in various places, and so on.
Also, please go visit Kristina – unless you’re sick, in which case stay away. When I talked to her today, I could hear in the background people meeting each other for the first time, after heard about each other through all of this. I can’t wait to meet a bunch of you when I come up from Portland on the 19th!
I just spoke to the first non-medical person who volunteered for duty, and she assures me it’s no big deal. You show up at 9 p.m. on Friday or Saturday and stay with Kristina for 24 hours, but you’re not at all stuck in the apartment. She is somewhat mobile.
The food, the medications, everything is all laid out for you and very straightforward. Of course, Kristina is very well-informed and knows exactly what to do. Basically, you make sure she gets her meds three times a day (all pills plus one oil that she puts in her mouth), you check her glucose level once a day (no needles, just a tiny pin prick on her finger), you do laundry, and you follow simple instructions for food handling.
In short, it’s nothing mysterious, nothing scary or threatening – but it is something that is desperately needed. There is a weekend this month that is not covered, and several days in January, as well. Please consider taking this opportunity to help!
Consult this calendar to find available dates, and then contact Kristina at her home. If you don’t have her number or email address, email me (paul@paulgerald.com) and I will forward it along. As of this posting, we need people for Dec. 29 and 30 and Jan. 12, 19, 20, 26 and 27.
Kristina is home and doing pretty well, all things considered. It’s been a whirlwind couple of days transitioning from hospital to home, and she’s pretty worn out. She said Thursday and Friday were “kind of a nosebleed” with all the stuff that had to be taken care of.
She’s having a harder time than she anticipated, mainly with getting around and stuff like standing up from a seated or kneeled-over position. Her eyesight has also been affected, and she has the occasional bout of nausea. She’s a little shaky and says she can’t read her own handwriting.
Still, the blood numbers are good, and the GVH is not too bad. Her biggest complaint seems to be that one of the meds she’s taking – a steroid which is in oil form and has to be sort of sprayed into her mouth – apparently makes everything she eats or drinks taste like the medication. Perhaps related to this, her appetite isn’t much, but last night she had her first real full-night’s sleep she can remember.
Don’t forget the fundraiser on Dec. 19 – invite friends, tell everyone you know, post the flyer in various places, and so on.
Also, please go visit Kristina – unless you’re sick, in which case stay away. When I talked to her today, I could hear in the background people meeting each other for the first time, after heard about each other through all of this. I can’t wait to meet a bunch of you when I come up from Portland on the 19th!
Wednesday, December 5, 2007
December 5: Headed Home Today
When I called Kristina just now, she was within hours of going home, but still feeling a little overwhelmed.
For example, she was looking at 19 pills she had to take! She was also waiting for a transition nurse to come, waiting for meds to be delivered, hassling around with her long-term care insurance company, trying to get paperwork from doctors, and so on -- all the complexity of going home, which is where she will be by the end of the day.
Even when she's at home, she's looking at a pretty restricted lifestyle. She can leave the house for brief periods, but she can't drive. She can go back to eating, but with severe restrictions, and she can't have alcohol. She can have visitors, but she'll probably wear out pretty quickly, and she can't have too much activity.
What is needed right now is volunteer help: to serve as caregivers on weekends and to put up flyers for the Dec. 19 fundraiser. Those are the biggest needs for now.
Anyway, she is headed home, and if you want to visit there, please call ahead to make sure she's there and can handle a visit.
Hooray!
For example, she was looking at 19 pills she had to take! She was also waiting for a transition nurse to come, waiting for meds to be delivered, hassling around with her long-term care insurance company, trying to get paperwork from doctors, and so on -- all the complexity of going home, which is where she will be by the end of the day.
Even when she's at home, she's looking at a pretty restricted lifestyle. She can leave the house for brief periods, but she can't drive. She can go back to eating, but with severe restrictions, and she can't have alcohol. She can have visitors, but she'll probably wear out pretty quickly, and she can't have too much activity.
What is needed right now is volunteer help: to serve as caregivers on weekends and to put up flyers for the Dec. 19 fundraiser. Those are the biggest needs for now.
Anyway, she is headed home, and if you want to visit there, please call ahead to make sure she's there and can handle a visit.
Hooray!
Tuesday, December 4, 2007
December 4: Going Home Tomorrow!
It’s been a crazy day for Kristina, but for good reasons. She is officially in transition to go home on Wednesday, December 5.
Doctors, nutritionists, her caretaker, friends – all have come through at some point today. She said she expected to be a little stressed out by this, but in fact she said, “I can’t wait to get the hell out if here! I will miss a couple of my favorite nurses, but I can’t wait to veg out on the couch, watch movies and order pizza.”
While she won’t be as restricted in her lifestyle as she originally thought (she will, for example, be able to go for slow walks around the neighborhood, and she’ll be able to have visitors), she will still be mostly isolated, and she isn't able to drive for months.
Meanwhile, she thinks she will be on about 22 medications, some of them several times a day! She will also have daily appointments at Fred Hutchinson Cancer Research Center. So if you want to visit, call to make sure she’s there.
Again, the next big thing to aim for (and pray about) is a Dec. 11 biopsy to see how well this whole transplant thing worked. That’s the thing she wants people send tons and tons of positive energy towards.
Also, please consider taking a one-day weekend shift as her caregiver. She says there is a weekend available right before New Year’s, and a few available in January.
Doctors, nutritionists, her caretaker, friends – all have come through at some point today. She said she expected to be a little stressed out by this, but in fact she said, “I can’t wait to get the hell out if here! I will miss a couple of my favorite nurses, but I can’t wait to veg out on the couch, watch movies and order pizza.”
While she won’t be as restricted in her lifestyle as she originally thought (she will, for example, be able to go for slow walks around the neighborhood, and she’ll be able to have visitors), she will still be mostly isolated, and she isn't able to drive for months.
Meanwhile, she thinks she will be on about 22 medications, some of them several times a day! She will also have daily appointments at Fred Hutchinson Cancer Research Center. So if you want to visit, call to make sure she’s there.
Again, the next big thing to aim for (and pray about) is a Dec. 11 biopsy to see how well this whole transplant thing worked. That’s the thing she wants people send tons and tons of positive energy towards.
Also, please consider taking a one-day weekend shift as her caregiver. She says there is a weekend available right before New Year’s, and a few available in January.
Monday, December 3, 2007
Dec. 3: Going Home Soon!
Great news: Kristina expects to go home Tuesday or Wednesday. That doesn’t mean that all is well, but it does mean that she gets to continue her recovery and treatment from her own apartment, which she is very excited about.
I think the upcoming transition is bringing some other things into focus for her: the need for money, logistical issues with the caregiver, the need for weekend caregiving volunteers, and so on. There’s also the added element that, due to her taking three steroids to combat GVH, she is now diabetic and needs insulin.
So she is by no means out of the woods, but at least she will soon be out of the hospital. There will be daily visits to the hospital for monitoring and treatment for several months – and she’ll be taking about 15 medications daily! – but she will be home.
The next big thing is a bone marrow biopsy in about nine days. Today is Day 19 since transplant, and on Day 28 she will have a biopsy (tissue sampling) from her bone marrow to see if the MDS has been eradicated. If it has been, then the disease is gone and she recovers from all this and gets on with her life. If it hasn’t been, there will be more chemo and another transplant.
Otherwise:
I think the upcoming transition is bringing some other things into focus for her: the need for money, logistical issues with the caregiver, the need for weekend caregiving volunteers, and so on. There’s also the added element that, due to her taking three steroids to combat GVH, she is now diabetic and needs insulin.
So she is by no means out of the woods, but at least she will soon be out of the hospital. There will be daily visits to the hospital for monitoring and treatment for several months – and she’ll be taking about 15 medications daily! – but she will be home.
The next big thing is a bone marrow biopsy in about nine days. Today is Day 19 since transplant, and on Day 28 she will have a biopsy (tissue sampling) from her bone marrow to see if the MDS has been eradicated. If it has been, then the disease is gone and she recovers from all this and gets on with her life. If it hasn’t been, there will be more chemo and another transplant.
Otherwise:
- Blood numbers are all up again, and some are back within normal
- I posted some links to media clips about her under a new category, personal information. It's on the left.
- I sent out an EVite to about 100 more people for the Dec. 19 fundraiser. The flyer on this page is all the info you need on that.
- Please consider volunteering for a 24-hour weekend shift as a caregiver. Email Kristin for more info.
- For visiting her at her apartment, all the same restrictions still apply, and during the day she may well be at the hospital. So call her in advance to make sure she’s there – but she would LOVE to have visitors, and of course it’s a lot easier than the hospital.
- Please consider making a small donation to her fund. There are many, many bills to pay.
Sunday, December 2, 2007
Dec. 2 -- Hoping to go Home Soon
Another mix of good news and bad news today.
Kristina isn’t going home tomorrow, as hoped – but she might go home as early as Wednesday.
Good news: blood numbers are all still going up, and some are back within the normal range. Bad news: she officially has Graft Versus Host Disease (GVHD), which has been a fear all along – but it’s apparently a mild case, and they caught it early. So that’s good. It’s in her gut (it could also be in the skin, liver, kidneys, etc.), and they found it Friday after taking biopsies of her esophagus, stomach and intestine.
The treatment for GVHD is three different steroids, which she was hoping to avoid for all their various side effects. As an example of her new reality, steroids raise her blood glucose level, so now she has to take insulin like a diabetic.
The other thing about having GVHD is that she’s nauseous all the time and has almost no appetite, and she generally feels raw and dried out. She also thinks she has a head cold, and last night she has restless leg syndrome and couldn’t sleep – another side effect of steroids.
Even with all this, her doctor assures her she’s doing quite well. It’s just frustrating for her because it had been going really well, and also because she just really, really wants to go home.
Meanwhile, the Christmas boat parade is happening in Seattle this evening. Again, bad news is she can’t participate, good news is she has a great view of it from her room.
She keeps telling me to thank everyone for all of your support. She’s also looking for anyone with a digital video camera, for a couple of reasons. One is to record a segment that KOMO TV did on her so we can post it on the site; the other is that she’s hoping to be able to somehow watch the Dec. 19 fundraiser from her home via the Internet.
And finally, if you have ideas for another fundraiser (raffle, silent auction, whatever), let us know.
Please post comments below if you have a camera or just want to send some good wishes. She reads them all.
Kristina isn’t going home tomorrow, as hoped – but she might go home as early as Wednesday.
Good news: blood numbers are all still going up, and some are back within the normal range. Bad news: she officially has Graft Versus Host Disease (GVHD), which has been a fear all along – but it’s apparently a mild case, and they caught it early. So that’s good. It’s in her gut (it could also be in the skin, liver, kidneys, etc.), and they found it Friday after taking biopsies of her esophagus, stomach and intestine.
The treatment for GVHD is three different steroids, which she was hoping to avoid for all their various side effects. As an example of her new reality, steroids raise her blood glucose level, so now she has to take insulin like a diabetic.
The other thing about having GVHD is that she’s nauseous all the time and has almost no appetite, and she generally feels raw and dried out. She also thinks she has a head cold, and last night she has restless leg syndrome and couldn’t sleep – another side effect of steroids.
Even with all this, her doctor assures her she’s doing quite well. It’s just frustrating for her because it had been going really well, and also because she just really, really wants to go home.
Meanwhile, the Christmas boat parade is happening in Seattle this evening. Again, bad news is she can’t participate, good news is she has a great view of it from her room.
She keeps telling me to thank everyone for all of your support. She’s also looking for anyone with a digital video camera, for a couple of reasons. One is to record a segment that KOMO TV did on her so we can post it on the site; the other is that she’s hoping to be able to somehow watch the Dec. 19 fundraiser from her home via the Internet.
And finally, if you have ideas for another fundraiser (raffle, silent auction, whatever), let us know.
Please post comments below if you have a camera or just want to send some good wishes. She reads them all.
Friday, November 30, 2007
Nov. 30: Not as Good a Day
I guess there will always be up days and down days; today is a down day for Kristina.
About 24 hours ago, the docs were making plans to take her off IV meds and feeding-by-IV, in preparation for her going home early next week. Her blood numbers are still going up (see charts link to left), and in fact Platelets are in the normal range, and Immunity (ANC) is headed out of the Neutropenic range. All this means that she is recovering from the side effects of chemotherapy.
Then the last two days she woke up bleeding from the ear, and she’s been nauseous pretty constantly. She has also been running hot seats and cold chills, though she has no fever. They are going to do a thing this afternoon called an upper GI (for gastrointestinal) endoscopic exam. Basically, that’s putting a camera down her throat to see how things look, and doing a biopsy to check the tissue for clues. At this point, they have no idea why her ear has been bleeding, and in fact she says her ear doesn’t even hurt.
The overriding concern, of course, is Graft Versus Host Disease, which is when the new blood from her transfusion attacks her own blood and organs as foreign invaders. Her doctors say about 30-40% of patients never get this, another 30-40% get it a little bit, and the rest get it chronically, which can have large effects on lifestyle.
SO … what all this means is unclear, and will stay that way at least until results come back from this afternoon. It probably means, too, that she won’t go home early next week. But nothing is certain.
We do know this: Today (Nov. 30) is not going to be a good day for a visit, because she’ll be wiped out. Also, for the next couple days, it will be a good idea to call before visiting, to make sure she’s up for it. Her voice is pretty strong, but there’s no telling how else she will be feeling.
I also have to tell you, and I’m using some of her own words here, that she’s discouraged and sad and frustrated. Things were going well, she had high hopes for going home, and now all of this comes along. This is probably how life is going to be for her for a while, but still: keep sending those positive vibes, give her a call this weekend, maybe go see her.
On a lighter note, readers of Seattle Weekly might get a kick out of seeing her name in print – though in small letters. I grabbed the ad from Tractor Tavern and will post it below. Check out the bottom box!
About 24 hours ago, the docs were making plans to take her off IV meds and feeding-by-IV, in preparation for her going home early next week. Her blood numbers are still going up (see charts link to left), and in fact Platelets are in the normal range, and Immunity (ANC) is headed out of the Neutropenic range. All this means that she is recovering from the side effects of chemotherapy.
Then the last two days she woke up bleeding from the ear, and she’s been nauseous pretty constantly. She has also been running hot seats and cold chills, though she has no fever. They are going to do a thing this afternoon called an upper GI (for gastrointestinal) endoscopic exam. Basically, that’s putting a camera down her throat to see how things look, and doing a biopsy to check the tissue for clues. At this point, they have no idea why her ear has been bleeding, and in fact she says her ear doesn’t even hurt.
The overriding concern, of course, is Graft Versus Host Disease, which is when the new blood from her transfusion attacks her own blood and organs as foreign invaders. Her doctors say about 30-40% of patients never get this, another 30-40% get it a little bit, and the rest get it chronically, which can have large effects on lifestyle.
SO … what all this means is unclear, and will stay that way at least until results come back from this afternoon. It probably means, too, that she won’t go home early next week. But nothing is certain.
We do know this: Today (Nov. 30) is not going to be a good day for a visit, because she’ll be wiped out. Also, for the next couple days, it will be a good idea to call before visiting, to make sure she’s up for it. Her voice is pretty strong, but there’s no telling how else she will be feeling.
I also have to tell you, and I’m using some of her own words here, that she’s discouraged and sad and frustrated. Things were going well, she had high hopes for going home, and now all of this comes along. This is probably how life is going to be for her for a while, but still: keep sending those positive vibes, give her a call this weekend, maybe go see her.
On a lighter note, readers of Seattle Weekly might get a kick out of seeing her name in print – though in small letters. I grabbed the ad from Tractor Tavern and will post it below. Check out the bottom box!
Wednesday, November 28, 2007
Nov. 28 -- Numbers Going Up!
Well, there's some pretty good news today: all of Kristina's blood numbers are going up, and there's a chance that she will go home early next week.
She walked a couple laps today and has been vomiting without warning, which wears her out. But her doctors say she's doing well overall, which is something we can all feel good about for now.
Her throat has gotten better, as well; she said on a scale of 1 to 10, with 1 being good, yesterday was a 4 and today 2.5.
This means that talking to her on the phone involves some actual conversation now! Give it a try: 206-598-3906.
She walked a couple laps today and has been vomiting without warning, which wears her out. But her doctors say she's doing well overall, which is something we can all feel good about for now.
Her throat has gotten better, as well; she said on a scale of 1 to 10, with 1 being good, yesterday was a 4 and today 2.5.
This means that talking to her on the phone involves some actual conversation now! Give it a try: 206-598-3906.
Tuesday, November 27, 2007
Nov. 27 -- Pretty Good Day
Just had a nice chat with Kristina on the phone, which should tell you right away that today is better than the last couple of days. She actually has a voice again! It's definitely faint, and she gets tired and spacey pretty quickly, but she can talk again, which is nice. She said her throat feels much better today and she's only vomited twice all day.
The blood numbers and her doctors both reflect that things might be looking up. Her docs said they think she's at her nadir as far as numbers go, and the new target date for sending her home is about a week from now, Dec. 2nd or 3rd. Let's all say a little prayer for that to happen!
Speaking of those blood numbers, I am happy to report that I have now created charts! I save them as images in an album on Picasa Web, and you can view them right here, or via a link on the left below the donations link.
Please check your calendars again and look for a weekend day in the next few months when you might be willing to do some caregiving at her apartment. There is some training involved, but people are in place to help with that. Leave a comment here or email Kristin at polarbare49@hotmail.com if you have any questions. Thanks!
That's it for now.
The blood numbers and her doctors both reflect that things might be looking up. Her docs said they think she's at her nadir as far as numbers go, and the new target date for sending her home is about a week from now, Dec. 2nd or 3rd. Let's all say a little prayer for that to happen!
Speaking of those blood numbers, I am happy to report that I have now created charts! I save them as images in an album on Picasa Web, and you can view them right here, or via a link on the left below the donations link.
Please check your calendars again and look for a weekend day in the next few months when you might be willing to do some caregiving at her apartment. There is some training involved, but people are in place to help with that. Leave a comment here or email Kristin at polarbare49@hotmail.com if you have any questions. Thanks!
That's it for now.
Monday, November 26, 2007
Nov. 26 Update
Hi, everyone. Spoke to Kristina today, and she had slept well last night but was headed for a nap. Her voice is still weak, and she was pretty spacey, but she was happy to report that another patient she's been keeping up with, Jessica Abood, is probably being discharged soon. That's our hope, of course!
Her blood numbers today are slightly up, and I also converted those numbers to charts in my Picasa Web account. There's a "Kristina's Blood Charts" link to the left, just below the Donate to Kristina's Medical Fund" link (hint, hint!).
Basically, we're still waiting for some news about the success of the transplant. Let's all hope there's good news soon!
Her blood numbers today are slightly up, and I also converted those numbers to charts in my Picasa Web account. There's a "Kristina's Blood Charts" link to the left, just below the Donate to Kristina's Medical Fund" link (hint, hint!).
Basically, we're still waiting for some news about the success of the transplant. Let's all hope there's good news soon!
Sunday, November 25, 2007
Sunday, Nov. 25
I am sitting by Kristina's bed again today, and she's dozing off a bit. I found her today surrounded by paperwork and bills, and with very little voice. She still has some pain in her throat, and her skin is largely covered with red bumps and a few large bruises. She has very little hair and has lost about 20+ pounds -- all this just to paint a picture. The sun is streaming through her window, which has a view of Montlake Cut. She's drinking some tea and occasionally having to spit into a bedpan.
There's no real medical news today. Blood numbers are about the same. Later today she will get her last dose of methotrexate, which is a chemo treatment that's a precentative against Graft Versus Host Disease. It's a pretty nasty drug and won't make her feel any better in the short term. What we're really waiting for right now is news on engraftment; we're on Day 11 since the transfusion now, so approaching the middle of the first 30 days.
Having done it twice now, I can tell you that visiting Kristina is quite easy, and of course she appreciates it very much. It's not scary, difficult or unpleasant. For a while today I just sat and read the paper while she wrote some checks. I know if I was in the hospital, I would want nothing more than friends to be around -- not bringing anything in particular, or doing anything, just being here. It's something to think about.
There's no real medical news today. Blood numbers are about the same. Later today she will get her last dose of methotrexate, which is a chemo treatment that's a precentative against Graft Versus Host Disease. It's a pretty nasty drug and won't make her feel any better in the short term. What we're really waiting for right now is news on engraftment; we're on Day 11 since the transfusion now, so approaching the middle of the first 30 days.
Having done it twice now, I can tell you that visiting Kristina is quite easy, and of course she appreciates it very much. It's not scary, difficult or unpleasant. For a while today I just sat and read the paper while she wrote some checks. I know if I was in the hospital, I would want nothing more than friends to be around -- not bringing anything in particular, or doing anything, just being here. It's something to think about.
Saturday, November 24, 2007
Straight from the Hospital
Hello, everyone!
I am typing this from a chair next to Kristina's bed. She's watching Stephen King's The Stand and showing me pictures from a sailing and camping trip.
She's not feeling great today, mostly because her throat hurts and she's quite hoarse. She gargles often and has a morphine drip with a button for the pain. Her team of doctors -- only three today but sometimes six or seven -- just came in for a checkup, and all seems well except for some dry, itchy skin and possibly a small fever. They told her she's doing well and went on their way.
Her white blood cell count is up slightly today, to 0.15 after being 0.13 yesterday and 0 the day before. ANC (immunity) is still zero, and HCT is still 30. Platelets, after a transfusion drove them as high as 85 on the 20th, are back down to 21 now. She also reminded me that I am supposed to put all these in chart form, so I'll get back on that.
Across the way, Husky Stadium is filling up for the annual Apple Cup football game (Washington vs. Washington State), so she'll be able to see a throng of people out her doorway and across the hall.
She's not walking as many laps as before, because she gets a little motion sickness -- which we both laughed at, as we are both veterans of Alaskan fishing, and she's been through 30-foot seas and not gotten seasick, but now she feels it walking around a flat floor. So she's working on yoga in her bed to at least stay flexible and comfortable.
I asked her if she wanted to say anything in particular, and she said, "Thank you everybody for all that is being done and will be done and all the contributions and people offering to help with my apartment and that I have a truly amazing group of friends and acquaintences who are bending over backward to help me out, and there are not enough words to show my gratitude."
We still need caregiving volunteers for weekend shifts, so please contact Kristin (polarbare49@hotmail.com) to ask about that; soon we will have the calendar posted online so you can see where we need people.
I am typing this from a chair next to Kristina's bed. She's watching Stephen King's The Stand and showing me pictures from a sailing and camping trip.
She's not feeling great today, mostly because her throat hurts and she's quite hoarse. She gargles often and has a morphine drip with a button for the pain. Her team of doctors -- only three today but sometimes six or seven -- just came in for a checkup, and all seems well except for some dry, itchy skin and possibly a small fever. They told her she's doing well and went on their way.
Her white blood cell count is up slightly today, to 0.15 after being 0.13 yesterday and 0 the day before. ANC (immunity) is still zero, and HCT is still 30. Platelets, after a transfusion drove them as high as 85 on the 20th, are back down to 21 now. She also reminded me that I am supposed to put all these in chart form, so I'll get back on that.
Across the way, Husky Stadium is filling up for the annual Apple Cup football game (Washington vs. Washington State), so she'll be able to see a throng of people out her doorway and across the hall.
She's not walking as many laps as before, because she gets a little motion sickness -- which we both laughed at, as we are both veterans of Alaskan fishing, and she's been through 30-foot seas and not gotten seasick, but now she feels it walking around a flat floor. So she's working on yoga in her bed to at least stay flexible and comfortable.
I asked her if she wanted to say anything in particular, and she said, "Thank you everybody for all that is being done and will be done and all the contributions and people offering to help with my apartment and that I have a truly amazing group of friends and acquaintences who are bending over backward to help me out, and there are not enough words to show my gratitude."
We still need caregiving volunteers for weekend shifts, so please contact Kristin (polarbare49@hotmail.com) to ask about that; soon we will have the calendar posted online so you can see where we need people.
Wednesday, November 21, 2007
Nov. 21: Not Feeling Well Today
There was a noticeable change in Kristina’s voice today as soon as she answered the phone. She woke up this morning vomiting and has already (as of noon) had two shots of morphine for intense pain in her throat. Both speaking and swallowing cause her pain, and the docs are considering putting her on a morphine drip, and possibly tube-feeding her. Her half-inch of hair is falling out, as well.
All in all, kind of a grim reminder that our friend is really sick. Her doctors have told her they’re impressed she made it to Day 7 post-transplant before showing some of these symptoms. She hopes this only lasts a week or two and says it’s more uncomfortable than she thought it would be.
The last two day’s blood counts give you some impression of the situation:
WBC 0.13 – 0.00 (she literally has no white blood cells at this point, and is getting blood transfusions; normal range for this number is 4.3-10)
HCT – 28 – 26 (not changing much, normal is 36 to 45)
ANC 0 – 0 (she has no immunity right now at all)
PLT 85 – 56 (this shows the results of Monday’s platelet transfusion wearing off; normal is 150-400)
Please keep sending healing vibes her way!
All in all, kind of a grim reminder that our friend is really sick. Her doctors have told her they’re impressed she made it to Day 7 post-transplant before showing some of these symptoms. She hopes this only lasts a week or two and says it’s more uncomfortable than she thought it would be.
The last two day’s blood counts give you some impression of the situation:
WBC 0.13 – 0.00 (she literally has no white blood cells at this point, and is getting blood transfusions; normal range for this number is 4.3-10)
HCT – 28 – 26 (not changing much, normal is 36 to 45)
ANC 0 – 0 (she has no immunity right now at all)
PLT 85 – 56 (this shows the results of Monday’s platelet transfusion wearing off; normal is 150-400)
Please keep sending healing vibes her way!
Monday, November 19, 2007
Nov. 19 Update
Today is Day 5 since the transfusion, and there’s an interesting number to report: 0.00. That is Kristina’s ANC count today, the measure of her immune system’s strength. And yes, that means that she has no immune system. A simple infection could literally kill her at this point, which is why all her visitors have to wear gowns and there are severe restrictions on what she can eat, and what can come into the room.
So, once again, call before visiting!
She actually feels okay today. She got a platelet transfusion today, because that number was down to 10 (normal is 150-400). The other numbers will pretty much drop to zero, which is expected, and then it’s a matter of waiting for engrafment, which is the process of the donated stem cells getting into her bone marrow and making healthy blood cells. This typically takes 10 to 14 days, though in her case it might take longer, because her donated stem cell count was lower than you hope for.
One other piece of good news: Jessica Abood, a transplant patient Kristina knows in the same hospital, is doing well, is off her feeding tube, and should be released for a second time.
Three things to take with you today:
So, once again, call before visiting!
She actually feels okay today. She got a platelet transfusion today, because that number was down to 10 (normal is 150-400). The other numbers will pretty much drop to zero, which is expected, and then it’s a matter of waiting for engrafment, which is the process of the donated stem cells getting into her bone marrow and making healthy blood cells. This typically takes 10 to 14 days, though in her case it might take longer, because her donated stem cell count was lower than you hope for.
One other piece of good news: Jessica Abood, a transplant patient Kristina knows in the same hospital, is doing well, is off her feeding tube, and should be released for a second time.
Three things to take with you today:
- There is a final version of the flyer for the December 19 fundraiser concert. I’ll post it separately.
- Please consider volunteering as a weekend caregiver at Kristina’s apartment; email Kristin for more information.
- Please considering pitching in to Kristina’s transplant fund, which you can do online with your credit card.
Sunday, November 18, 2007
Nov. 18 Update
I spoke with Kristina Sunday evening. She was enjoying a nice hand-made pizza from her friend Mike; apparently there are a lot of things that have to go into stuff like this, like thoroughly washing the veggies, having only one person touch it, and so on. It was a much-appreciated pizza!
Here are yesterday and today’s blood counts, which continue to show the expected decline:
WBC: 0.38 – 0.24
HCT 28 – 28
ANC 0.12 – 0.02
PLT 30 – 18
Kristina attributes this to her second hit of methotrexate, a chemo drug that is a preventative against Graph Versus Host Disease. She will get this drug four times over the next couple of weeks.
She also this weekend started to see her first low-grade fever (99.7 Sunday), which might be a harbinger of bad stuff to come. She’s now lost 21.5 pounds but basically still feels pretty good.
Her apartment, meanwhile, is getting a transformation. A donated dishwasher was installed so dishes can be cleaned in the right way, and some friends also converted part of the kitchen to a sleeping area for the professional caregiver who will be there five nights a week.
That’s it for now – please stay in touch!
Here are yesterday and today’s blood counts, which continue to show the expected decline:
WBC: 0.38 – 0.24
HCT 28 – 28
ANC 0.12 – 0.02
PLT 30 – 18
Kristina attributes this to her second hit of methotrexate, a chemo drug that is a preventative against Graph Versus Host Disease. She will get this drug four times over the next couple of weeks.
She also this weekend started to see her first low-grade fever (99.7 Sunday), which might be a harbinger of bad stuff to come. She’s now lost 21.5 pounds but basically still feels pretty good.
Her apartment, meanwhile, is getting a transformation. A donated dishwasher was installed so dishes can be cleaned in the right way, and some friends also converted part of the kitchen to a sleeping area for the professional caregiver who will be there five nights a week.
That’s it for now – please stay in touch!
Friday, November 16, 2007
Nov. 16 Update
Hi, everybody.
The news today is that the expected drop in Kristina’s blood counts (the result of earlier chemotherapy) has started to arrive. This doesn’t mean that she feels miserable, but it does mean that she is headed towards a condition called neutropenia, which essentially means she has little or no resistance to outside infections.
Again, this is a reminder that if you come to visit (see room info at top left), you cannot have recently had shots or been sick, and you can’t bring flowers. Call her if you have any questions.
For a little reference, next to each count I have included the normal range and the last three days’ counts. The last one, in bold, is today’s.
WBC (4.3 to 10) – 2.95 – 3.01 – 0.95
HCT (36 to 45) – 30 – 30 – 29
ANC (0.500 is neutropenic) – 2.27 – 2.65 – 0.610
PLT (150 to 400) – 65 – 98 – 56
Kristina walked some laps today but says her appetite is about half of normal. She also really wanted me to say that she is very moved by the love and support she’s getting. I think she can feel all the healing vibes aimed her way.
Also, please check out the previous post for ways you can pitch in to help with some volunteer effort. Another way to help, of course, is follow this link to make a donation to her medical-expenses fund. Just scroll to the bottom, click "Contribute Now," and follow the instructions.
The news today is that the expected drop in Kristina’s blood counts (the result of earlier chemotherapy) has started to arrive. This doesn’t mean that she feels miserable, but it does mean that she is headed towards a condition called neutropenia, which essentially means she has little or no resistance to outside infections.
Again, this is a reminder that if you come to visit (see room info at top left), you cannot have recently had shots or been sick, and you can’t bring flowers. Call her if you have any questions.
For a little reference, next to each count I have included the normal range and the last three days’ counts. The last one, in bold, is today’s.
WBC (4.3 to 10) – 2.95 – 3.01 – 0.95
HCT (36 to 45) – 30 – 30 – 29
ANC (0.500 is neutropenic) – 2.27 – 2.65 – 0.610
PLT (150 to 400) – 65 – 98 – 56
Kristina walked some laps today but says her appetite is about half of normal. She also really wanted me to say that she is very moved by the love and support she’s getting. I think she can feel all the healing vibes aimed her way.
Also, please check out the previous post for ways you can pitch in to help with some volunteer effort. Another way to help, of course, is follow this link to make a donation to her medical-expenses fund. Just scroll to the bottom, click "Contribute Now," and follow the instructions.
How You Can Help
(Today's message is from Ali Saccone)
Hello all!
Many of you have asked as to how you can help Kristina as she deals with her health issues. Well, now is the time!!
We are organizing the following event to raise funds to pay for her care giving and living expenses so Kristina can have a stress free recovery.
Kristina's 'Bone Marrow Bash'
Wednesday December 19th, 2007
The Tractor Tavern
Ballard, Seattle
Spread the word!!
How can you help:
We have formed teams to deal with all the details of the event, and we need good friends to lend a hand. If you would PLEASE like to join any of these teams to help with the success of the event in honor of Kristina, please contact the team leader at the address provided ASAP!
Flyers and Distribution: Craig (craigless64@yahoo.com)
Media Team: Position Available (Contact Ali at alisaccone@hotmail.com for more detailed information.)
Raffle: Mike (lioneye724@yahoo.com)
Production: Tim (timstail@yahoo.com/206-799-8977)
Donations and Procurement: Position Available (Contact Ali at alisaccone@hotmail.com)
This is not necessarily related to the event, however we need someone to do some hardcore fundraising! We are looking for someone who has some experience with
fundraising, who will approach corporations and/or philanthropically minded individual, for cash donations on behalf of Kristina. If you, or someone you know, can help us with this task, please let us know!
A huge THANK YOU to all of you in advance!! Looking forward to hearing from you soon!
In the interest of web-site space this announcement has been reduced.
Hello all!
Many of you have asked as to how you can help Kristina as she deals with her health issues. Well, now is the time!!
We are organizing the following event to raise funds to pay for her care giving and living expenses so Kristina can have a stress free recovery.
Kristina's 'Bone Marrow Bash'
Wednesday December 19th, 2007
The Tractor Tavern
Ballard, Seattle
Spread the word!!
How can you help:
We have formed teams to deal with all the details of the event, and we need good friends to lend a hand. If you would PLEASE like to join any of these teams to help with the success of the event in honor of Kristina, please contact the team leader at the address provided ASAP!
Flyers and Distribution: Craig (craigless64@yahoo.com)
Media Team: Position Available (Contact Ali at alisaccone@hotmail.com for more detailed information.)
Raffle: Mike (lioneye724@yahoo.com)
Production: Tim (timstail@yahoo.com/206-799-8977)
Donations and Procurement: Position Available (Contact Ali at alisaccone@hotmail.com)
This is not necessarily related to the event, however we need someone to do some hardcore fundraising! We are looking for someone who has some experience with
fundraising, who will approach corporations and/or philanthropically minded individual, for cash donations on behalf of Kristina. If you, or someone you know, can help us with this task, please let us know!
A huge THANK YOU to all of you in advance!! Looking forward to hearing from you soon!
In the interest of web-site space this announcement has been reduced.
Thursday, November 15, 2007
Day 1, and All's Well
Today is Kristina's first day post-transfusion, and she sounds quite good. Yesterday she was a little melancholy and sad, but today she sounds upbeat.
She says the transfusion was "a non-event, just another transfusion" that took about an hour and a half. Somebody even took pictures, so maybe one day we'll have those online. One funny thing is that before the transfusion, her blood type was B-positive, and today it's A-positive.
Another thing that happened is that, as a result of the transfusion, her platelet count temporarily spiked. Here are today's blood numbers:
WBC 3.01
HCT 30
ANC 2.65
PLT 98
She says it's "all wait and see now," and there's no telling when we'll know anything definitive. What we do know is that she's lost 20 pounds but her hair is growing back -- and it's darker, which she doesn't seem too thrilled about.
Here's a way people can help: bring her a movie to watch. She likes international and travel films in particular.
I'll post more when I hear it.
She says the transfusion was "a non-event, just another transfusion" that took about an hour and a half. Somebody even took pictures, so maybe one day we'll have those online. One funny thing is that before the transfusion, her blood type was B-positive, and today it's A-positive.
Another thing that happened is that, as a result of the transfusion, her platelet count temporarily spiked. Here are today's blood numbers:
WBC 3.01
HCT 30
ANC 2.65
PLT 98
She says it's "all wait and see now," and there's no telling when we'll know anything definitive. What we do know is that she's lost 20 pounds but her hair is growing back -- and it's darker, which she doesn't seem too thrilled about.
Here's a way people can help: bring her a movie to watch. She likes international and travel films in particular.
I'll post more when I hear it.
Tuesday, November 13, 2007
No Transplant Just Yet
Kristina’s transplant has been put off a day – sort of. It will happen around 4 a.m. on Wednesday. Apparently the plane with the stem cells doesn’t get to Seattle until 11:20 tonight.
She’s a little sleepy today and “kind of out of it,” but otherwise seems to feel pretty good.
Here’s something to think about: After Kristina gets out of the hospital, she will need full-time caregiving at home. She has hired a pro for five days a week and has saved weekends for friends to volunteer.
A good friend named Kristin is running the caregiving sign-up operation, and soon there will be an online calendar for people to sign up. Meanwhile, if you think you could put in a 24-hour shift at Kristina’s place some weekend, or if you just want some more info about it, please get in touch with Kristin at polarbare49@hotmail.com.
Here are today’s numbers, which are headed down:
WBC: 2.95 – yesterday was 3.65 – normal is 4.3 to 10
HCT: 30 – yesterday was 29 – normal is 36 to 45
ANC: 2.27 – yesterday was 3.32 – normal is 1.8 to 7
PLT: 59 – yesterday was 65 – normal is 150 to 400
By the way, like the new layout? Kristina chose it herself!
She’s a little sleepy today and “kind of out of it,” but otherwise seems to feel pretty good.
Here’s something to think about: After Kristina gets out of the hospital, she will need full-time caregiving at home. She has hired a pro for five days a week and has saved weekends for friends to volunteer.
A good friend named Kristin is running the caregiving sign-up operation, and soon there will be an online calendar for people to sign up. Meanwhile, if you think you could put in a 24-hour shift at Kristina’s place some weekend, or if you just want some more info about it, please get in touch with Kristin at polarbare49@hotmail.com.
Here are today’s numbers, which are headed down:
WBC: 2.95 – yesterday was 3.65 – normal is 4.3 to 10
HCT: 30 – yesterday was 29 – normal is 36 to 45
ANC: 2.27 – yesterday was 3.32 – normal is 1.8 to 7
PLT: 59 – yesterday was 65 – normal is 150 to 400
By the way, like the new layout? Kristina chose it herself!
Monday, November 12, 2007
More Detailed Transplant Info
I poked around Marrow.org and found two pages with more details:
Receiving Your New Cells -- Bone Marrow Transplant
and
Waiting for Engraftment: Days 0-30.
Receiving Your New Cells -- Bone Marrow Transplant
and
Waiting for Engraftment: Days 0-30.
Tomorrow is "Day Zero"
Hi, folks.
First off, some details for today. Kristina now has an answering machine, so the vast power of the internet has demonstrated itself again. Also, as a reminder, she is in room #8214 and would love visitors. Call ahead to be sure it’s a good time; the phone number there is 206-598-3906.
Fundraiser Shaping Up
Plans are coming together nicely for a fundraiser concert in Seattle on Dec. 19. It will be at the Tractor Tavern in Ballard, with bands and a raffle and lots of fun and friends. Doors open at 8 p.m., and we’ll have more details and a flyer soon. Oh, and it’s being called Kristina’s Bone Marrow Bash.
And speaking of that whole fundraising thing, please take a moment right now and make a donation to her Transplant Fund. Lots of bills to pay.
Transplant Time
Well, Kristina is done with chemotherapy, and tomorrow is “Day Zero.” That means that tomorrow Kristina gets her bone marrow transplant. She told me today it’s actually something of a “non-event.” Basically, they put some material into her IV, and over the course of an hour it enters her body via a catheter in her chest. She might experience a little fatigue and some aches, but that’s it.
It’s more rightly called a Stem Cell Transfusion, since they no longer actually transplant bone marrow. The stem cells from her anonymous donor will be flown into Seattle tomorrow, checked out in a couple of labs, and then given to her, probably tomorrow evening.
What Then?
Then we wait for something called engrafment; this is when the stem cells from the donor make their way into Kristina’s bone marrow and start making blood cells. Typically, this takes 10 to 14 days, during which time Kristina will probably experience something called mucousitis, which is inflammation of the mucous membranes, both in the mouth and intestine.
The bigger potential problem during this time is Graft-Versus-Host-Disease (GVHD). I looked this up on the Web, and I found this page at Marrow.org, which is loaded with information. Here’s their quick definition: “In GVHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host). GVHD can affect many different parts of the body. The skin, eyes, stomach and intestines are affected most often. GVHD can range from mild to life-threatening.”
There are also possible kidney, liver, and eyesight complications – clearly, this is why she’s in the hospital and needs so much caregiving to recover when she gets out.
Latest Numbers
Her blood numbers are going down (as they’re supposed to), but not much. She tells me it’s a delayed reaction to the chemo. Last time around she didn’t get really sick for a couple of weeks after the chemo, but this time she expects it within the week.
Here are the numbers for Sunday and Monday:
Sunday: WBC 3.16, HCT 31, ANC 2.52, PLT 67
Monday: WBC 3.65, HCT 29, ANC 3.23, PLT 65
She’s still doing laps around the ward and would still love some visitors – just call ahead.
First off, some details for today. Kristina now has an answering machine, so the vast power of the internet has demonstrated itself again. Also, as a reminder, she is in room #8214 and would love visitors. Call ahead to be sure it’s a good time; the phone number there is 206-598-3906.
Fundraiser Shaping Up
Plans are coming together nicely for a fundraiser concert in Seattle on Dec. 19. It will be at the Tractor Tavern in Ballard, with bands and a raffle and lots of fun and friends. Doors open at 8 p.m., and we’ll have more details and a flyer soon. Oh, and it’s being called Kristina’s Bone Marrow Bash.
And speaking of that whole fundraising thing, please take a moment right now and make a donation to her Transplant Fund. Lots of bills to pay.
Transplant Time
Well, Kristina is done with chemotherapy, and tomorrow is “Day Zero.” That means that tomorrow Kristina gets her bone marrow transplant. She told me today it’s actually something of a “non-event.” Basically, they put some material into her IV, and over the course of an hour it enters her body via a catheter in her chest. She might experience a little fatigue and some aches, but that’s it.
It’s more rightly called a Stem Cell Transfusion, since they no longer actually transplant bone marrow. The stem cells from her anonymous donor will be flown into Seattle tomorrow, checked out in a couple of labs, and then given to her, probably tomorrow evening.
What Then?
Then we wait for something called engrafment; this is when the stem cells from the donor make their way into Kristina’s bone marrow and start making blood cells. Typically, this takes 10 to 14 days, during which time Kristina will probably experience something called mucousitis, which is inflammation of the mucous membranes, both in the mouth and intestine.
The bigger potential problem during this time is Graft-Versus-Host-Disease (GVHD). I looked this up on the Web, and I found this page at Marrow.org, which is loaded with information. Here’s their quick definition: “In GVHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host). GVHD can affect many different parts of the body. The skin, eyes, stomach and intestines are affected most often. GVHD can range from mild to life-threatening.”
There are also possible kidney, liver, and eyesight complications – clearly, this is why she’s in the hospital and needs so much caregiving to recover when she gets out.
Latest Numbers
Her blood numbers are going down (as they’re supposed to), but not much. She tells me it’s a delayed reaction to the chemo. Last time around she didn’t get really sick for a couple of weeks after the chemo, but this time she expects it within the week.
Here are the numbers for Sunday and Monday:
Sunday: WBC 3.16, HCT 31, ANC 2.52, PLT 67
Monday: WBC 3.65, HCT 29, ANC 3.23, PLT 65
She’s still doing laps around the ward and would still love some visitors – just call ahead.
Saturday, November 10, 2007
Kristina is in a New Room
Just spoke with our favorite patient, who sounds pretty good for a person on chemo. She says she feels a little “shaky,” but that’s to be expected – and just this afternoon she started on the more serious chemo drug. So things might get worse soon, and in fact our talk today was cut short because she had to go vomit.
She is in a new room, #8214. The phone number there is 206-598-3906. She now has a view of Mount Rainier, which is an improvement.
She says the docs tell her everything is going according to plan, and the transfusion is still expected to take place on Tuesday. After that, she’ll just be in the hospital (no more chemo) and it will be all about those blood levels. “Hurry up and wait,” is how she put it.
Speaking of blood levels, here are the last two day’s numbers, with the normal range in parentheses:
WBC: 5.87 – 4.84 (4.3 - 10)
HCT: 36 – 34 (36 - 45)
ANC: 4.13 – 3.31 (1.8 - 7)
PLT: 86 – 75 (150 - 400)
An explanation of these numbers is in the previous post.
She is in a new room, #8214. The phone number there is 206-598-3906. She now has a view of Mount Rainier, which is an improvement.
She says the docs tell her everything is going according to plan, and the transfusion is still expected to take place on Tuesday. After that, she’ll just be in the hospital (no more chemo) and it will be all about those blood levels. “Hurry up and wait,” is how she put it.
Speaking of blood levels, here are the last two day’s numbers, with the normal range in parentheses:
WBC: 5.87 – 4.84 (4.3 - 10)
HCT: 36 – 34 (36 - 45)
ANC: 4.13 – 3.31 (1.8 - 7)
PLT: 86 – 75 (150 - 400)
An explanation of these numbers is in the previous post.
Thursday, November 8, 2007
Nov. 8 Update
I just spoke to Kristina, and her mom was visiting, which was nice. She (Kristina, that is) had just finished walking her 11 laps around the ward and felt pretty good. Her only complaints at this point are that she's a little jittery, her tastebuds are going, and her stomach is iffy, though she's not vomiting or having diarrhea. She told me she's not in pain, but "something's up, and my body knows it." Hopefully these symptoms stop when she stops taking the dilantin tomorrow.
Two notes on visiting: word is it's better to park across the street, and after you get to the 8th floor, turn left past the nurse's station.
Here are today's blood counts, again with the normal ranges and also with a few notes to explain what each one is:
WBC: 4.6 (4.3 - 10) These are white blood cells.
HCT: 36 (36 - 45). Hematocrit is cells that carry oxygen; the fact that this number went up since yesterday was a surprise to her.
ANC: 3.04 (1.8 - 7). Stands for Absolute Nutrofill Count, which is how susceptible she is to outside matter. When this gets to zero (and it will), she will have no immune system.
PLT: 77 (150-400) Platelets are responsible for clotting. Below 25 and you can't get surgery because you will, as she put it, "bleed out." Below 10 (where Kristina is headed) and you get transfusions.
One more note: she told me that yesterday she took 58 busufan pills (that's the chemo) plus 14 others, mostly prophylactic. She says she takes pills "all day long."
Two notes on visiting: word is it's better to park across the street, and after you get to the 8th floor, turn left past the nurse's station.
Here are today's blood counts, again with the normal ranges and also with a few notes to explain what each one is:
WBC: 4.6 (4.3 - 10) These are white blood cells.
HCT: 36 (36 - 45). Hematocrit is cells that carry oxygen; the fact that this number went up since yesterday was a surprise to her.
ANC: 3.04 (1.8 - 7). Stands for Absolute Nutrofill Count, which is how susceptible she is to outside matter. When this gets to zero (and it will), she will have no immune system.
PLT: 77 (150-400) Platelets are responsible for clotting. Below 25 and you can't get surgery because you will, as she put it, "bleed out." Below 10 (where Kristina is headed) and you get transfusions.
One more note: she told me that yesterday she took 58 busufan pills (that's the chemo) plus 14 others, mostly prophylactic. She says she takes pills "all day long."
Wednesday, November 7, 2007
Nov. 7 Update
First of all, I highly, highly encourage/request/plead with everyone, especially in the Seattle area, to go visit Kristina (see the info in the previous post). I spoke to her again Wednesday afternoon, and she sounds very upbeat – even a little twitchy, in fact, but she says that’s the dilantin, which makes her feel a little goofy in terms of nervous energy and occasional vertigo.
My point is, she can have visitors, she would love visitors, and for right now she feels basically good. Her meds will change this weekend to something more toxic, and as she told me, she “will be miserable any day now.”
Just call before you come, to make sure she’s in the room. If she doesn’t answer, call back in a few minutes, as she may be either walking laps around the hallway or in the shower or gone for a procedure of some sort.
By the way, if anybody reading this has a spare phone-message machine, she’d love to have that.
So, the medical news is all pretty good at this point. Her weekly chest x-ray was clear, and the following blood numbers, she tells me, are what they should be at this point. She says these will gradually go down to almost zero – the reason for chemotherapy in anticipation of the transplant on Nov. 13. The reason there’s a one-year recovery from this is that her body has to rebuild these numbers to where they should be.
As always, the normal range here is in parentheses:
White blood cells: 5.41 (4.3 - 10)
HCT: 33 (36 - 45)
ANC: 3.92 (1.8 - 7)
Platelets: 81 (150 - 400)
My point is, she can have visitors, she would love visitors, and for right now she feels basically good. Her meds will change this weekend to something more toxic, and as she told me, she “will be miserable any day now.”
Just call before you come, to make sure she’s in the room. If she doesn’t answer, call back in a few minutes, as she may be either walking laps around the hallway or in the shower or gone for a procedure of some sort.
By the way, if anybody reading this has a spare phone-message machine, she’d love to have that.
So, the medical news is all pretty good at this point. Her weekly chest x-ray was clear, and the following blood numbers, she tells me, are what they should be at this point. She says these will gradually go down to almost zero – the reason for chemotherapy in anticipation of the transplant on Nov. 13. The reason there’s a one-year recovery from this is that her body has to rebuild these numbers to where they should be.
As always, the normal range here is in parentheses:
White blood cells: 5.41 (4.3 - 10)
HCT: 33 (36 - 45)
ANC: 3.92 (1.8 - 7)
Platelets: 81 (150 - 400)
Tuesday, November 6, 2007
How to go see Kristina
-- and how she's doing
I spoke to Kristina this afternoon, and she sounds quite good. She said she’s a little loopy from the meds, but the negative effects of the chemo have yet to kick in. She doesn’t think it will be long before that happens.
So, as for visiting her, she can have visitors at any time – even for a sleepover.
Here is her info:
Room #8258
University of Washington Medical Center
1959 NE Pacific St.
Seattle, WA 98195
Room phone: 206-598-3926
Parking is best across the street in the underground "Triangle" lot.
Take the northeast elevator to 8th floor, turn left past the nurse's station.
There are some restrictions:
-> no flowers
-> no fresh fruit/veggies
-> no head colds/tummy flu exposure
-> no recently vaccinated children
-> visitors must ware a gown & gloves before they enter the room
And now, for the other question: How is she doing?
Here are blood levels from the day she was admitted, Nov. 5:
(Note: I don’t really know what any of these mean, but she sent the "normal" ranges.)
11-4 CBC Levels:
White Blood Cells: 4.75 (normal is 4.3 - 10)
Hematocrit: 33 (normal is 36 - 45)
Platelets: 74 (normal is 150 - 400)
ANC: 2.88 (normal is 1.8 - 7)
11-4 Liver Levels:
AST (GOT): 29 (normal is 15 - 40)
ALT (GPT): 40 (normal is 6 - 40)
And now, here are the numbers from November 5 (note that they are all up):
WBC 5.85
HCT 34
PLT 84
ANC 3.06
Note: If there's anything else you want to know in these posts, let me know in the comments or at paul@paulgerald.com.
More tomorrow.
Paul
So, as for visiting her, she can have visitors at any time – even for a sleepover.
Here is her info:
Room #8258
University of Washington Medical Center
1959 NE Pacific St.
Seattle, WA 98195
Room phone: 206-598-3926
Parking is best across the street in the underground "Triangle" lot.
Take the northeast elevator to 8th floor, turn left past the nurse's station.
There are some restrictions:
-> no flowers
-> no fresh fruit/veggies
-> no head colds/tummy flu exposure
-> no recently vaccinated children
-> visitors must ware a gown & gloves before they enter the room
And now, for the other question: How is she doing?
Here are blood levels from the day she was admitted, Nov. 5:
(Note: I don’t really know what any of these mean, but she sent the "normal" ranges.)
11-4 CBC Levels:
White Blood Cells: 4.75 (normal is 4.3 - 10)
Hematocrit: 33 (normal is 36 - 45)
Platelets: 74 (normal is 150 - 400)
ANC: 2.88 (normal is 1.8 - 7)
11-4 Liver Levels:
AST (GOT): 29 (normal is 15 - 40)
ALT (GPT): 40 (normal is 6 - 40)
And now, here are the numbers from November 5 (note that they are all up):
WBC 5.85
HCT 34
PLT 84
ANC 3.06
Note: If there's anything else you want to know in these posts, let me know in the comments or at paul@paulgerald.com.
More tomorrow.
Paul
Monday, November 5, 2007
Nov. 5: Kristina is Checking In Today
Everyone,
I spoke to Kristina last night, and she is on track to be admitted to the hospital this afternoon, Nov. 5, around 4 p.m. She sounds good and determined, but under no illusions about what lies ahead.
At this moment, all I know is that she will be on the 8th floor of the University of Washington Medical Center in Seattle. She will be able to receive visitors, and hopes to eventually be online. For details like room number, current condition and phone/email status, stay tuned here.
Also, we will be posting charts of her various blood counts, once those start coming in, and once I clear the technological hurdles between hither and yon.
Here, generally, is what lies ahead for the next week or so: she'll start getting doses of chemo on Tuesday, a medication called busulfan. She takes this orally, and she suspects it will soon make her quite sick. One of the things it can do is give people seizures, so on Monday afternoon she will take three rounds of dilantin, which is an anti-seizure medication. Apparently, after three rounds of this, you get some pretty bad vertigo.
The scheduled date for the transplant is November 13. There is a chance she will be out of the hospital by the end of the month -- assuming everything goes just right -- but even then, she will be confined to home for a period of months, she will have to avoid contact with the sun for a year or more, she can't swim, and in general her life will be dramatically altered.
There will also be many, many bills to pay, so please consider taking a moment to make a donation for her medical expenses via the link to the right.
One final note for now: We told you about Trish Dicomo in the last post. She and her husband have been very supportive and helpful (they even posted a response to the last post) as Trish battled the same condition with the same treatment program as Kristina. Trish Dicomo passed away on Saturday. Kristina asks that we all send prayers and energy to the Dicomo family.
I spoke to Kristina last night, and she is on track to be admitted to the hospital this afternoon, Nov. 5, around 4 p.m. She sounds good and determined, but under no illusions about what lies ahead.
At this moment, all I know is that she will be on the 8th floor of the University of Washington Medical Center in Seattle. She will be able to receive visitors, and hopes to eventually be online. For details like room number, current condition and phone/email status, stay tuned here.
Also, we will be posting charts of her various blood counts, once those start coming in, and once I clear the technological hurdles between hither and yon.
Here, generally, is what lies ahead for the next week or so: she'll start getting doses of chemo on Tuesday, a medication called busulfan. She takes this orally, and she suspects it will soon make her quite sick. One of the things it can do is give people seizures, so on Monday afternoon she will take three rounds of dilantin, which is an anti-seizure medication. Apparently, after three rounds of this, you get some pretty bad vertigo.
The scheduled date for the transplant is November 13. There is a chance she will be out of the hospital by the end of the month -- assuming everything goes just right -- but even then, she will be confined to home for a period of months, she will have to avoid contact with the sun for a year or more, she can't swim, and in general her life will be dramatically altered.
There will also be many, many bills to pay, so please consider taking a moment to make a donation for her medical expenses via the link to the right.
One final note for now: We told you about Trish Dicomo in the last post. She and her husband have been very supportive and helpful (they even posted a response to the last post) as Trish battled the same condition with the same treatment program as Kristina. Trish Dicomo passed away on Saturday. Kristina asks that we all send prayers and energy to the Dicomo family.
Monday, October 29, 2007
Back to the Hospital Nov. 5
Everyone,
I spoke with Kristina yesterday (Oct. 28), and she says she expects to be back in the hospital the afternoon of Nov. 5. She will start her chemo therapy the next morning, and Nov. 13 would be what is called "Day 0," or as she put it, "my new birthday." Basically, that would be the day that material from her donor is put into her body.
These dates could all change due to a variety of factors, but for now this is the plan.
According to the plan, as of Nov. 5 she will be at the University of Washington Medical Center, and she will be able to have visitors. The details on all of that – room number, visitation times and details such as her current condition – will be posted here as soon as I have them.
Kristina was also very, very sad yesterday. She has been in touch with a couple named Trish and Chip Dicomo, who have been very helpful and supportive to Kristina in many ways. Trish has the same disease as Kristina and went through the same treatment plan she has chosen.
This weekend Trish took a major turn for the worse (see trish.dicomo.net), so Kristina is asking that we all send out some energy to the east.
I’ll post more as I hear it.
I spoke with Kristina yesterday (Oct. 28), and she says she expects to be back in the hospital the afternoon of Nov. 5. She will start her chemo therapy the next morning, and Nov. 13 would be what is called "Day 0," or as she put it, "my new birthday." Basically, that would be the day that material from her donor is put into her body.
These dates could all change due to a variety of factors, but for now this is the plan.
According to the plan, as of Nov. 5 she will be at the University of Washington Medical Center, and she will be able to have visitors. The details on all of that – room number, visitation times and details such as her current condition – will be posted here as soon as I have them.
Kristina was also very, very sad yesterday. She has been in touch with a couple named Trish and Chip Dicomo, who have been very helpful and supportive to Kristina in many ways. Trish has the same disease as Kristina and went through the same treatment plan she has chosen.
This weekend Trish took a major turn for the worse (see trish.dicomo.net), so Kristina is asking that we all send out some energy to the east.
I’ll post more as I hear it.
Monday, October 22, 2007
Save the Date:
December 19 Fundraiser Concert
There’s a planned musical fundraiser for Kristina on December 19 at The Tractor Tavern in Ballard, so stay tuned for all the details.
In the meantime, please consider making a donation, via the link on the right side of this page, to help with Kristina’s expenses.
In the meantime, please consider making a donation, via the link on the right side of this page, to help with Kristina’s expenses.
October 22 Update
Greetings, everyone.
Here is your October 22 update.
First, on the previous subject of possible donors, the male who is the primary possibility is due to have his evaluation early this week, so stay tuned on that. At this point, the tentative date for Kristina’s transplant is November 2, but that is very tentative.
The good news this week came from Kristina’s latest bone marrow aspiration. They do aspirations to measure the percentage of blast cells in her bone marrow. In the simplest terms, if the percentage goes over 5 she needs more chemotherapy. When she left the hospital her percentage was 1.1, at which point the disease is considered to be in “clinical” remission, rather than full remission. Well, with last week’s aspiration, her blast percentage was down to 0.33 percent! Kristina told me this is “righteous good news for the transplant.”
She also had blood drawn and tested this week, and everything was within the normal range. The two things to keep an eye on, however, are her liver and platelet numbers. The liver numbers were up slightly (we want them to go down), and the platelet levels were down (we want them to go up). Her platelet level was 160, which is down from 260 when she left the hospital last month. Normal is consider 150-400, and if it gets down to about 15 she’ll need platelet transfusions. Mainly, this means she has to be very careful to avoid bruising or anything that might make her bleed.
And finally, she chose her transplant protocol; she went with the standard protocol, which she described to me as “blast me now so I’ll have a better chance later.” In other words, the protocol she chose is much harsher during the actual transplant but has a higher survival rate afterwards. And when I say harsh, I mean it; she told me the transplant alone has a mortality rate of around 40 percent.
Kristina made it clear to me that she chose this route because she wants to do whatever it takes to not have to do all of this again in two years. Financially, physically, and emotionally, she cannot deal with repeating all this as a single person, so she’s taking the best chance of long-term survival she has – even if it means higher short-term risk.
There’s a planned musical fundraiser on December 19 at The Tractor Tavern in Ballard, so stay tuned for all the details on that. In the meantime, please consider making a donation, via the link on the right side of this page, to help with Kristina’s expenses.
As always, she appreciates the good and loving vibes. She’s trying to get back to each and every one of you little by little, so please forgive if it’s taking a while. Meanwhile, she’d love to hear from you, so please post some comments down below, and she’ll see them.
Here is your October 22 update.
First, on the previous subject of possible donors, the male who is the primary possibility is due to have his evaluation early this week, so stay tuned on that. At this point, the tentative date for Kristina’s transplant is November 2, but that is very tentative.
The good news this week came from Kristina’s latest bone marrow aspiration. They do aspirations to measure the percentage of blast cells in her bone marrow. In the simplest terms, if the percentage goes over 5 she needs more chemotherapy. When she left the hospital her percentage was 1.1, at which point the disease is considered to be in “clinical” remission, rather than full remission. Well, with last week’s aspiration, her blast percentage was down to 0.33 percent! Kristina told me this is “righteous good news for the transplant.”
She also had blood drawn and tested this week, and everything was within the normal range. The two things to keep an eye on, however, are her liver and platelet numbers. The liver numbers were up slightly (we want them to go down), and the platelet levels were down (we want them to go up). Her platelet level was 160, which is down from 260 when she left the hospital last month. Normal is consider 150-400, and if it gets down to about 15 she’ll need platelet transfusions. Mainly, this means she has to be very careful to avoid bruising or anything that might make her bleed.
And finally, she chose her transplant protocol; she went with the standard protocol, which she described to me as “blast me now so I’ll have a better chance later.” In other words, the protocol she chose is much harsher during the actual transplant but has a higher survival rate afterwards. And when I say harsh, I mean it; she told me the transplant alone has a mortality rate of around 40 percent.
Kristina made it clear to me that she chose this route because she wants to do whatever it takes to not have to do all of this again in two years. Financially, physically, and emotionally, she cannot deal with repeating all this as a single person, so she’s taking the best chance of long-term survival she has – even if it means higher short-term risk.
There’s a planned musical fundraiser on December 19 at The Tractor Tavern in Ballard, so stay tuned for all the details on that. In the meantime, please consider making a donation, via the link on the right side of this page, to help with Kristina’s expenses.
As always, she appreciates the good and loving vibes. She’s trying to get back to each and every one of you little by little, so please forgive if it’s taking a while. Meanwhile, she’d love to hear from you, so please post some comments down below, and she’ll see them.
Thursday, October 11, 2007
Word on Potential Donors
Kristina got word today that two possible stem cell donors have been located and are going through the evaluation process. The primary option is a 34-year-old American male who, it is hoped, will have an evaluation done next week. The backup at this point is a 23-year-old European woman.
Meanwhile, Kristina has met with her new doctor, as well as a social worker at Fred Hutchinson Cancer Research Center, and is now considering two different protocols for her treatment. Without going into too much detail, one protocol is quite severe during the transplant process, but it has a better relapse-free survival rate after the transplant. The other protocol -- the first one recommended for her -- is less severe (though still very unpleasant) during the transplant process, but the post-transplant survival numbers are less encouraging.
There are published studies on both protocols out on the web. Even the Abstract on these is full of statistics and acronyms, but we're offering them, anyway. A study of her first recommended protocol was published in the journal Bone Marrow Transplantation. The other protocol she is considering was the subject of a study in Blood, the Journal of the American Society of Hematology.
I spoke with her for some time on the phone today, and she sounds good. I'm sure she'd love to read some comments on this post, so don't be shy!
PS: I also changed the background color and added a Hit Counter at the very bottom of the page.
Meanwhile, Kristina has met with her new doctor, as well as a social worker at Fred Hutchinson Cancer Research Center, and is now considering two different protocols for her treatment. Without going into too much detail, one protocol is quite severe during the transplant process, but it has a better relapse-free survival rate after the transplant. The other protocol -- the first one recommended for her -- is less severe (though still very unpleasant) during the transplant process, but the post-transplant survival numbers are less encouraging.
There are published studies on both protocols out on the web. Even the Abstract on these is full of statistics and acronyms, but we're offering them, anyway. A study of her first recommended protocol was published in the journal Bone Marrow Transplantation. The other protocol she is considering was the subject of a study in Blood, the Journal of the American Society of Hematology.
I spoke with her for some time on the phone today, and she sounds good. I'm sure she'd love to read some comments on this post, so don't be shy!
PS: I also changed the background color and added a Hit Counter at the very bottom of the page.
Thursday, October 4, 2007
Read about Kristina in the Seattle Paper
The Seattle Post-Intelligencer did a story a few weeks back on Kristina. You can read about it at the following link:
Local woman isolated, afraid
and just hoping for the best
Local woman isolated, afraid
and just hoping for the best
Wednesday, October 3, 2007
Update for October 3, 2007
Hello again, friends.
Kristina received difficult news on Monday, October 1: her Bone Marrow Transplant has been delayed.
The reason for the delay is that doctors tried but were not able to harvest enough stem cells from her sister, Kim, who had previously been identified as a bone marrow donor. Kim is now on her way back to her home in France. Kristina is at her home in Seattle.
Kristina has now been placed on the National Bone Marrow Donor Registration List, the purpose of which is to find an “unrelated donor.” Among the many things we don't know at this point is how long this process might take; Kristina has been told it may be five weeks, it may be 2-4 months, and it may be six months.
Changes to the Strategy
This latest development changes the medical strategy dramatically. For one thing, although she will not be admitted into the hospital right away, her health will be monitored and she will have blood draws on a weekly basis. Kristina will also have another Bone Marrow Aspiration and Biopsy in two weeks.
Here’s a quick, overly simplified background on Kristina’s condition: She was diagnosed with myleodysplasia syndrome (MDS), which can be a precursor to acute myelogenous leukemia (AML). What’s supposed to happen in a human body is that bone marrow creates stem cells which go on to become blood cells. In MDS, and then AML, these cells don’t form properly; instead, they become a malignant cell called a myleoblast, or just a “blast cell.” If you have 10% blast cells, you have MDS, which is what Kristina was diagnosed with. If you have 20% blasts, you have AML. Her levels reached 19% in August, which precipitated her first round of chemo.
The only cure for MDS is a bone marrow transplant, which Kristina was hoping to get from her sister. For various medical reasons, that’s no longer an option; hence Kristina’s placement on the national donor list. The irony here is that MDS can’t be cured by chemotherapy alone, whereas AML can.
Kristina’s upcoming bone marrow biopsy is to check the blast percentages in her bone marrow. As of September 20, after her first round of chemotherapy, her blast percentage was down to 1.1%. Should it reach 5% or above, she will likely go in for more chemotherapy treatments. The tricky thing here is that, after chemo, she will still have MDS (though it will be reduced), but she will also have the short-term and long-term effects of the chemotherapy, which she needs healthy blood cells to recover from.
So what we should be praying for at this point is a good match for a bone marrow transplant.
One Way You Can Help
Meanwhile, it is now easy to make donations, via check or credit card, to Kristina's medical fund. To use your credit card, visit Kristina's page at the National Transplant Assistance Fund (NTAF). If you prefer to write a check, make it out to “NTAF Northwest Bone Marrow Transplant Fund,” then in the memo section of the check, write “In honor of Kristina Southard.” Then mail the check to this address:
NTAF
150 N. Radnor Chester Road
Suite- F120
Radnor, PA 19087
Fore more information on this process, or about the NTAF, call 800-642-8399 or visit transplantfund.org. You can also donate by credit card over the phone. All donations are tax-deductible, and all money will be spent on Kristina's needed medical expenses.
Looking Forward
This week's news is extremely disappointing, but we will persevere. Kristina asks that everyone please send tons of positive energy.
Stay tuned to this website for further updates. It is being maintained by Paul Gerald in Portland, Oregon, whom you may reach at paul@paulgerald.com. We will also be adding two other features: a calendar so people can volunteer as fill-in caregivers, and charts so we can all keep up with where Kristina’s blood levels are.
We are in the early planning stages on some music-related fund raisers in the Seattle area, so please stay tuned.
Also, the guestbook at Kristina’s CaringBridge.com site is still available for signing.
Thank you for staying in touch, and God bless.
Kristina received difficult news on Monday, October 1: her Bone Marrow Transplant has been delayed.
The reason for the delay is that doctors tried but were not able to harvest enough stem cells from her sister, Kim, who had previously been identified as a bone marrow donor. Kim is now on her way back to her home in France. Kristina is at her home in Seattle.
Kristina has now been placed on the National Bone Marrow Donor Registration List, the purpose of which is to find an “unrelated donor.” Among the many things we don't know at this point is how long this process might take; Kristina has been told it may be five weeks, it may be 2-4 months, and it may be six months.
Changes to the Strategy
This latest development changes the medical strategy dramatically. For one thing, although she will not be admitted into the hospital right away, her health will be monitored and she will have blood draws on a weekly basis. Kristina will also have another Bone Marrow Aspiration and Biopsy in two weeks.
Here’s a quick, overly simplified background on Kristina’s condition: She was diagnosed with myleodysplasia syndrome (MDS), which can be a precursor to acute myelogenous leukemia (AML). What’s supposed to happen in a human body is that bone marrow creates stem cells which go on to become blood cells. In MDS, and then AML, these cells don’t form properly; instead, they become a malignant cell called a myleoblast, or just a “blast cell.” If you have 10% blast cells, you have MDS, which is what Kristina was diagnosed with. If you have 20% blasts, you have AML. Her levels reached 19% in August, which precipitated her first round of chemo.
The only cure for MDS is a bone marrow transplant, which Kristina was hoping to get from her sister. For various medical reasons, that’s no longer an option; hence Kristina’s placement on the national donor list. The irony here is that MDS can’t be cured by chemotherapy alone, whereas AML can.
Kristina’s upcoming bone marrow biopsy is to check the blast percentages in her bone marrow. As of September 20, after her first round of chemotherapy, her blast percentage was down to 1.1%. Should it reach 5% or above, she will likely go in for more chemotherapy treatments. The tricky thing here is that, after chemo, she will still have MDS (though it will be reduced), but she will also have the short-term and long-term effects of the chemotherapy, which she needs healthy blood cells to recover from.
So what we should be praying for at this point is a good match for a bone marrow transplant.
One Way You Can Help
Meanwhile, it is now easy to make donations, via check or credit card, to Kristina's medical fund. To use your credit card, visit Kristina's page at the National Transplant Assistance Fund (NTAF). If you prefer to write a check, make it out to “NTAF Northwest Bone Marrow Transplant Fund,” then in the memo section of the check, write “In honor of Kristina Southard.” Then mail the check to this address:
NTAF
150 N. Radnor Chester Road
Suite- F120
Radnor, PA 19087
Fore more information on this process, or about the NTAF, call 800-642-8399 or visit transplantfund.org. You can also donate by credit card over the phone. All donations are tax-deductible, and all money will be spent on Kristina's needed medical expenses.
Looking Forward
This week's news is extremely disappointing, but we will persevere. Kristina asks that everyone please send tons of positive energy.
Stay tuned to this website for further updates. It is being maintained by Paul Gerald in Portland, Oregon, whom you may reach at paul@paulgerald.com. We will also be adding two other features: a calendar so people can volunteer as fill-in caregivers, and charts so we can all keep up with where Kristina’s blood levels are.
We are in the early planning stages on some music-related fund raisers in the Seattle area, so please stay tuned.
Also, the guestbook at Kristina’s CaringBridge.com site is still available for signing.
Thank you for staying in touch, and God bless.
Monday, October 1, 2007
Sign the Guestbook at CaringBridge
Although Kristina has a new online home, we are still offering a link to the guestbook at CaringBridge.com. Please take a moment to sign it now by clicking this link:
Kristina's Guestbook
Kristina's Guestbook
New Home for Kristina Updates
Welcome to the new KristinaSouthard.org. We are working on a last few technical details, but from now on this will be your central point for keeping up with Kristina.
We are very grateful for the space Kristina had at CaringBridge.com, and we want you to know that we will still offer a space for messages and comments from you to Kristina. For now, there's an email link to the right. Also, we are working on a way for all of us to make donations to Kristina.
You can also visit Kristina's photo gallery at CaringBridge.
This blog is being managed by Paul Gerald in Portland, Oregon. I will do my very best to keep it up to date. Please email me at paul@paulgerald.com if you have any questions, comments, concerns or suggestions. I can also be reached at these two phone numbers: 503-227-4445 during weekdays or 971-227-2059 on my cell.
We are very grateful for the space Kristina had at CaringBridge.com, and we want you to know that we will still offer a space for messages and comments from you to Kristina. For now, there's an email link to the right. Also, we are working on a way for all of us to make donations to Kristina.
You can also visit Kristina's photo gallery at CaringBridge.
This blog is being managed by Paul Gerald in Portland, Oregon. I will do my very best to keep it up to date. Please email me at paul@paulgerald.com if you have any questions, comments, concerns or suggestions. I can also be reached at these two phone numbers: 503-227-4445 during weekdays or 971-227-2059 on my cell.
Wednesday, September 12, 2007
Wednesday, September 12: Home and Feeling Great
I spoke with Kristina yesterday and she sounds great!!! After a very tough week of chemo therapy Kristina’s blood counts are very good. As of Tuesday 9/11 her counts were: WBC=2.2, HCT=29, Platelet=37, CNC=594.
She was discharged Tuesday 9/11 and headed home to rest for her Fred Hutchinson appointment that is scheduled for 9/18.
Her sister Kim is scheduled to arrive from France today 9/12 and they are both going to start the process for the bone marrow transplant scheduled for the middle of October at the University of Washington. Kristina can be reached at home at (206) 860-0493 and thanks everybody for their calls, visits, kind wishes and prayers.
Wednesday, September 5, 2007
Wednesday, September 5: Update
Kristina is now 4 or 5 days into feeling the effects of the chemo treatment. She is extremely tired and is just trying to plow through it as best she can.
Due to her current condition she asks that you please call first before visiting and don't feel bad if she says she is not accepting visitors on occassion. She also requests that you please keep visits short as her stamina is on the low end.
Kristina wants everyone to know that she is blown away by the response and support she has received from everyone and she greatly appreciates the help she has thus far received.
As of today her counts are: WBC=0.4, HCT=30, ANC=0.
Her sister Kim will be coming over from France around the 17th or 18th. Tentative dates for the transplant are now between October 1-11. Kristina is still waiting for insurance approval before Kim arrives.
Steve M
Friday, August 31, 2007
Friday, August 31: Transplant Scheduled
Kristina is being scheduled for the bone marrow/stem cell transplant for about September 17. "About" means that the transplant process begins with 2 weeks of evaluation, 1 week of chemo, and then the transplant. This means the transplant should occur about October 11. Keep in mind these dates are today's best estimates. I'm sure this will change . . .
The day 14 bone aspiration was not done (day 14 was yesterday) because they're doing the transplant whether or not the leukemia is in remission. At first blush this made me nervous because I thought this meant things were very serious. Actually, this means they are treating her case aggressively.
Kristina continues to be highly neutropenic and tired. She is still in a very critical period - still very susceptible to infection. Please call before a visit. To date, things are progressing as expected with little or no complications.
Friday, August 24, 2007
Friday, August 24: Updates and Counts
Kristina is starting to feel the effects of the chemo, her blood pressure is very low, she's neutropenic (ANC= 300), and she has had some neasea . She is still fielding many calls sorting through the transplant. The long and the short: she's exhausted. If you want to visit, call her first to ensure she has the strength.
Last night was the 7th day of the chemo, she has 3 more days of another chemo drug which will mark the end of the chemo treatment. Over the next several weeks, the doc's will be monitoring her white blood cell count (WBC), platelet count (PLT), hemocrit % (HCT)and neutropenic state (ANC). I will try to post these measures daily. The chemo will make all of these measures drop dramatically low (I think - I'm not a sure what it will do to the HCT count).
Here are some of her counts. 8/23: WBC-1.2, HCT 29, PLT 21, ANC 300. 8/22: WBC 1.4, HCT 30, PLT 30, ANC 1232. The ANC count dropped dramatically from day 6 to day 7.
Day 14 is a big day. They will do another bone aspiration/biopsy to measure the blast count. Basically, they want that to be 0. This says whether the chemo did it's job. If the blast count is not at an acceptably low level, they will administer another round of chemo. Day 14 is Thursday, Aug 30.
Janet Bien
Saturday, August 18, 2007
Saturday, August 18: Chemo Begins
Kristina has officially jumped into the deep end of the pool of what will be a long journey back to regaining her life. She received her first dose of chemotherapy at 9:30pm last night. Kristina is such a brave soul and she was brave yet again but this was very very scary. No turning back now.
The chemo was administered by the most gentle and caring nurse with 27 years in Oncology at Virginia Mason. This woman delicately cradled Kristina's fears and that of her friends and funneled them towards what is important right now: the sustaining power of hope and the belief beyond anything else she is going to get through this.
The chemo was administered by the most gentle and caring nurse with 27 years in Oncology at Virginia Mason. This woman delicately cradled Kristina's fears and that of her friends and funneled them towards what is important right now: the sustaining power of hope and the belief beyond anything else she is going to get through this.
Wednesday, August 1, 2007
The Story Begins
Kristina was recently diagnosed with a form of Leukemia known as Myleodysplasia Syndrome - RAEB2. This aggressive form of cancer of the blood is necessitating the need for lethal chemotherapy and a bone marrow transplant.
We are struggling to understand all that may be encompassed in the immediate future. If you inquire and do not receive a prompt response, please understand that we are working hard to process and move forward through what is down the path to come....and we will follow up with you.
There are those of you who are very close to her, and those of you who are acquaintances. We ask that all of you send positive energy for this life changing journey that is beginning for her. We welcome any experience, insight, tips and support. What's needed is expertise in finances, care giving, scheduling and fund raising. If you are someone who wishes to bring your expertise forward or who wishes to assist through fundraising or care giving, please contact/email, Ali Saccone at alisaccone@hotmail.com.
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