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.
Monday, October 29, 2007
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.
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