Hey team so latest update of about 20 minutes ago is that mom's ejection fraction (http://en.wikipedia.org/wiki/Ejection_fraction) has improved to 45-50%!!!! Woohooo!!!! This means that she's finally free of Joey (her external defibrillator) and onto focusing solely on getting through her post-transplant/new marrow adventure!
A quick history on mom's heart (Ejection Fraction):
60-65% (January 2011)
40-45% (February 2011)
15-20% (4/18/11)
30-35% (5/25/11)
45-50% (6/27/11)
More details on Fundraising Event shortly. We are in the brainstorming stages but if you know of anyone who wants to donate to our cause now they can use our NFT site:
http://www.transplants.org/donate/dixiewolfe
(98% of the profits from this site go directly to mom, and you get a tax write off for anything that's donated!)
Or if you want to join our volunteer network please send your email and phone number to me at: wolkate@bethel.edu and I will be happy to invite you to our LotsaHelpingHands site!
You're prayers and continued support is beyond words-you all are angels in our lives!
All my love and gratitude,
Kate
Monday, June 27, 2011
Friday, June 17, 2011
Mom's Second Birthday!!! (AKA: BMT Day)
Well Mom's Bone Marrow Transplant was last Wednesday. (Sorry about the lapse in updates and photos...it's been quite the busy month so far!) Anyways so after a long hard haul we FINALLY made it to transplant. (Only 6 months of hard work from mom battling everything from infections, to heart issues, to fevers/chilling, to well everything-she is simply inspiring in her daily smiles and laughter that she shares with all of us. Her love for life is infectious and I find joy in each moment I am able to spend with her).
For Bone Marrow Transplant patient's the day of transplant is considered Day "0" and everything starts over after it. (Think of it as the day in between AD and BC in religious contexts). For transplant patients everything is starting anew on this day: hope, life, new immune system and cells...it's all new!! So they celebrate a "second birthday" as a result! Ours was filled with lots of cakes, laughter and love. See a few clips below of our adventure that day... (sorry my computer isn't cooperating I will be uploading them later).
For those of you who seem to be among the norm, transplant-though it is often titled a "surgery" or "operation"-is actually more comparable to a blood transfusion. The whole process (for both cord bloods) took at most a half hour. It's incredibly quick and simple in its format. However the next several weeks, then months, then year will truly determine her body's ability to adapt and change to the new marrow which will be slowly taking over her body's old marrow. So here's a VERY quick and simplistic version of what transplant entails-if you have additional question please feel free to email me (wolkate@bethel.edu) and I would be happy to explain it more in-depth!
Work-Up Week:
* Mom went through a week of vigorous tests and reviews with all of her doctors before she was cleared for transplant.
Pre-Transplant (inpatient week):
* Mom went through 1 week of chemotherapy and 1 day of radiation. This treatment is used to weaken her system so it is more likely to accept the new stem cells and allow them to establish themselves within her marrow and develop new healthy cells. (As I have described to many of you, the goal was to clear out all of the resistance on her side since her cells were not recognizing the cancer cells as “the enemy”-since her body was generating them. So the goal, now, is to send in these foreign stem cells-two packs of cord blood stem cells- to attack what may be left, not only the cancerous cells, but also what's left of mom's immune system).
***During this week the doctor's also did a work up on mom's heart to make sure everything was up-to-date on her heart's conditions/regiments. ****
Onto transplant!!!
Transplant day, as I said before, is the easiest part of this entire process. The two bags of cells are transfused in less than an hour and then the rest of the day is spent resting and laughing with staff, friends, and family.
Post Transplant
* (Day 0-Day 7) After transplant occurs, it's typically a week of the cells finding their way to mom's marrow from the infusion site (her port). During this time the doctor's will be using "Growth Factors" to help stimulate the cells development within her body, this may cause her own cells to temporarily increase in number but by the following week the donor's cells should be beating them back down.
* (Day 14-Day 21) During this time “engraftment” occurs within mom’s marrow. In other words, the cord blood stem cells will have attached to mom’s bone marrow and will begin creating new healthy cells in her system. During this time her own cells/body may also react to the new cells in the form of GVHD (Graft Verses Host Disease), which is the donor cells attacking mom’s cells with potential reactions on her skin, her digestive track, kidney and liver depending on the severity of reaction.Discharge:* Mom’s eventual discharge will be based on many variables. Most importantly her cell counts, appetite, and daily living tasks (including exercise, etc). Her Bone Marrow Biopsy will be June 6th and we will be able to assess more of her progress from these results.
* At this point we will need as many volunteers as we can find for tasks ranging from: running errands, to visiting with mom, to overnight care-person, to meal providers, among many other options. None of these are “SKILLED” positions and you will ALWAYS have a medical professional available for 24/7 assistance and any questions you may have. But it will be a HUGE favor to us to know if you are even THINKING about helping this will be an on-going adventure with mom. And her first 100 days post transplant are critical to her success, though it typically will take up to a year to fully recover from this entire process. So thank you all for your continued outpouring of love and support! You are what keeps us going! If you want more detailed updates and how to volunteer your time/energy/etc in the future please send me your email address to wolkate@bethel.edu I would be happy to include you in our Lotsa Helping Hands site!
Thanks again!
All my love,
Kate
Tuesday, June 14, 2011
It has come to my attention...
So according to a couple sources, as well as a re-read of my blog yesterday, my rose colored glasses might have slipped a bit. I apologize for the "reality check" format/emotional theme of my blog. My mind has been a little overcast lately, too many balls in the air and not enough hands to juggle all of them, I guess. But somehow the love of those around me still keeps that smile sneaking back onto my face.
Life has been a daily rollercoaster lately. I am, for the most-part, ready for this next adventure, just a little bit apprehensive and worried about my lack of control of these results. (After all I don't have any cells in the game this time, though those Killer cells pretty stellar last round!) At the same time, my faith in mom's treating physicians and staff is beyond measure. They are absolutely incredible and their knowledge is limitless. My ability to continue to work 45-50 hrs per week, and still find time for self care, is completely to their credit. They are the best care providers a girl could ask for! My mind is at peace knowing that mom is in their capeable hands!
So on that note, I am like a little kid before christmas today. Butterflies in my stomach are flapping their wings with excitement, still nervous about recently leaving their own little worlds (the safe shell of their cocoons). Tomorrow will be filled with laughter, rest, probably some tears and LOTS of cupcakes! (For many patients Transplant is seen as a second birthday-the opportunity for new/renewed life thanks to the cells of another. So OBVIOUSLY cupcakes are a MUST and I will be making two dozen after work today!) :-D
Well back to work with me! Just wanted to let all of your worries, over my minor depressed state, ease so "don't to cry for me Agentina..." (sorry, having a musical sort of day). I will still be smiling next time you see me. Dancing randomly and always giggling over my adventures. And on the same note, mom is still goofy and happy, just tired from the treatments, and she is looking forward to the next adventure ahead. :)
I will try to capture as many images as I can tomorrow and post them in the next week! Thank you all for being such a wonderful blessing in our lives! Talk to you more tomorrow!
Life has been a daily rollercoaster lately. I am, for the most-part, ready for this next adventure, just a little bit apprehensive and worried about my lack of control of these results. (After all I don't have any cells in the game this time, though those Killer cells pretty stellar last round!) At the same time, my faith in mom's treating physicians and staff is beyond measure. They are absolutely incredible and their knowledge is limitless. My ability to continue to work 45-50 hrs per week, and still find time for self care, is completely to their credit. They are the best care providers a girl could ask for! My mind is at peace knowing that mom is in their capeable hands!
So on that note, I am like a little kid before christmas today. Butterflies in my stomach are flapping their wings with excitement, still nervous about recently leaving their own little worlds (the safe shell of their cocoons). Tomorrow will be filled with laughter, rest, probably some tears and LOTS of cupcakes! (For many patients Transplant is seen as a second birthday-the opportunity for new/renewed life thanks to the cells of another. So OBVIOUSLY cupcakes are a MUST and I will be making two dozen after work today!) :-D
Well back to work with me! Just wanted to let all of your worries, over my minor depressed state, ease so "don't to cry for me Agentina..." (sorry, having a musical sort of day). I will still be smiling next time you see me. Dancing randomly and always giggling over my adventures. And on the same note, mom is still goofy and happy, just tired from the treatments, and she is looking forward to the next adventure ahead. :)
I will try to capture as many images as I can tomorrow and post them in the next week! Thank you all for being such a wonderful blessing in our lives! Talk to you more tomorrow!
Monday, June 13, 2011
Another Week, Another Adventure
So apparently it's been a little over a week since I last checked in with all of you. In the meantime, mom is now inpatient going through her last day of chemotherapy (today) and one day of radiation (tomorrow, we held two "Care Conferences," and are all working on continuing to breath, taking each day in it's turn and not racing ahead of ourselves (or maybe that's my current mind's focus).
Mom's current status is frusteration and a bit of loneliness, or at least it seems to have been the few times I have made it in to see her. She's frusterated with having to continue to wear "Joey" (her external defribrillator), more leads with electrodes attached (to assist in monitoring her heart), and these are all in addition to her new "port" (catheter that goes straight into her heart, it's like the PICC line before except this one's through her chest instead of her arm and it's wider in size).
So over all she looks like a BMT science experiment. Her eyes still twinkle at times, but she's having a MUCH harder time this time around keeping her spirits up. The break out into the world for that month really improved her spirits as well as her heart and as a result she's getting stir-crazy in her current small space with her lines serving as her "ball and chain". So if you have a free moment some time to go visit her, for 15-20 minutes, the social interaction really can make a difference in her mood. When I was there yesterday, because of my sheer exhaustion, I fell asleep and even then she said it was "just nice to have a presence there" with her.
Just a reminder, though she is labeled officially as being in "isolation," she is NOT in a bubble, she's in a room. This means that as long as you are healthy and haven't been exposed to any illness recently you are good to visit her-she REALLY needs the company. Please just call her before going to make sure that day will work for her as well! Thanks :)
As for the Care Conferences, to be completely honest I was VERY dissappointed with the number of people who attended. Mostly because I personalized the percentage of people who attended from the number we had reached out to. Out of the 300+ that we communicated the event to only about 15 people showed up between the two sessions. The two biggest things I was reminded of by the participants of the sessions were:
1. Numbers aren't what you need to look at, rather look at the support of those who are present and can be used to reach others around them-spreadding news word of mouth. So think of it more as a networking experiment.
2. The title of "conference" sounds more like a lecture than a gathering of people with a common passion (my mom) so this likely drove some people away who would have happily been there otherwise.
So for those of may have even the slightest intention of signing up to volunteer for one of the MANY options in the future (including: driver, errand runner, overnight caregiver/support person, daytime caregiver/support person, meal provider, etc...believe me there will be countless opportunities in the future). Please send me your email address at: wolkate@bethel.edu so that I can add you to our volunteer website. Then you'll be able to access the universal calender with the various "activities" for mom whenever you choose. This is NOT pressure being applied to guilt you into helping us. Rather this is us offering opportunities for all of you incredible people out there a TANGABLE outlet for your love and concern for our family. I would be happy to explain more about this if you have questions, again just shoot me an email!
The other portion of the conference was about a fundraising event in the future, hopefully in the middle of July 2011. So keep an eye out for details on this!
We woud love to hear more feedback from all of you, what is working for communication or future plans, etc I love hearing new and fresh ideas/questions and being challenged in my thought process by all of you. We LOVE creativity and new ideas-so if you've had something on the back of your mind give me a shout out in an email about how to improve anything!
Quick summary about me:
I am happy, but at the same time overwhelmed and burning out. So social interaction: sitting with me or giving me a hug, a random text or phone call really blow my mind right now and keep me smiling for days. It's incredible how much compassion we have that we can share with others. Back to my quick summary, I am trying to exercise more, taking my anger/frusteration/etc to the streets for a nice run, or mediation and other practices to maintain my mental health through (http://www.pathwaysminneapolis.org/). They have been an incredible resource and outlet! Emotionally each day is it's own individual rollercoaster. But I give all credit back to all of you, without you I wouldn't be able to get out of the bed in the morning and keep on running this marathon. Your prayers and continued to support are beyond measure in their ability to sustain all of us right now. So to all of you incredible, marvelous and beautiful people "THANK YOU!!!"
Well back to work for me. Try to post again soon!
Oh BIGGEST NEWS: Mom's transplant is this Wednesday the 15th so I will try to post ASAP after that but PLEASE keep prayers going strong that day and beyond for continued good health of mom and mental endurance for all of us. That day will be the starting day for a whole NEW adventure!
Much love and appreciation,
Kate
wolkate@bethel.edu
Mom's current status is frusteration and a bit of loneliness, or at least it seems to have been the few times I have made it in to see her. She's frusterated with having to continue to wear "Joey" (her external defribrillator), more leads with electrodes attached (to assist in monitoring her heart), and these are all in addition to her new "port" (catheter that goes straight into her heart, it's like the PICC line before except this one's through her chest instead of her arm and it's wider in size).
So over all she looks like a BMT science experiment. Her eyes still twinkle at times, but she's having a MUCH harder time this time around keeping her spirits up. The break out into the world for that month really improved her spirits as well as her heart and as a result she's getting stir-crazy in her current small space with her lines serving as her "ball and chain". So if you have a free moment some time to go visit her, for 15-20 minutes, the social interaction really can make a difference in her mood. When I was there yesterday, because of my sheer exhaustion, I fell asleep and even then she said it was "just nice to have a presence there" with her.
Just a reminder, though she is labeled officially as being in "isolation," she is NOT in a bubble, she's in a room. This means that as long as you are healthy and haven't been exposed to any illness recently you are good to visit her-she REALLY needs the company. Please just call her before going to make sure that day will work for her as well! Thanks :)
As for the Care Conferences, to be completely honest I was VERY dissappointed with the number of people who attended. Mostly because I personalized the percentage of people who attended from the number we had reached out to. Out of the 300+ that we communicated the event to only about 15 people showed up between the two sessions. The two biggest things I was reminded of by the participants of the sessions were:
1. Numbers aren't what you need to look at, rather look at the support of those who are present and can be used to reach others around them-spreadding news word of mouth. So think of it more as a networking experiment.
2. The title of "conference" sounds more like a lecture than a gathering of people with a common passion (my mom) so this likely drove some people away who would have happily been there otherwise.
So for those of may have even the slightest intention of signing up to volunteer for one of the MANY options in the future (including: driver, errand runner, overnight caregiver/support person, daytime caregiver/support person, meal provider, etc...believe me there will be countless opportunities in the future). Please send me your email address at: wolkate@bethel.edu so that I can add you to our volunteer website. Then you'll be able to access the universal calender with the various "activities" for mom whenever you choose. This is NOT pressure being applied to guilt you into helping us. Rather this is us offering opportunities for all of you incredible people out there a TANGABLE outlet for your love and concern for our family. I would be happy to explain more about this if you have questions, again just shoot me an email!
The other portion of the conference was about a fundraising event in the future, hopefully in the middle of July 2011. So keep an eye out for details on this!
We woud love to hear more feedback from all of you, what is working for communication or future plans, etc I love hearing new and fresh ideas/questions and being challenged in my thought process by all of you. We LOVE creativity and new ideas-so if you've had something on the back of your mind give me a shout out in an email about how to improve anything!
Quick summary about me:
I am happy, but at the same time overwhelmed and burning out. So social interaction: sitting with me or giving me a hug, a random text or phone call really blow my mind right now and keep me smiling for days. It's incredible how much compassion we have that we can share with others. Back to my quick summary, I am trying to exercise more, taking my anger/frusteration/etc to the streets for a nice run, or mediation and other practices to maintain my mental health through (http://www.pathwaysminneapolis.org/). They have been an incredible resource and outlet! Emotionally each day is it's own individual rollercoaster. But I give all credit back to all of you, without you I wouldn't be able to get out of the bed in the morning and keep on running this marathon. Your prayers and continued to support are beyond measure in their ability to sustain all of us right now. So to all of you incredible, marvelous and beautiful people "THANK YOU!!!"
Well back to work for me. Try to post again soon!
Oh BIGGEST NEWS: Mom's transplant is this Wednesday the 15th so I will try to post ASAP after that but PLEASE keep prayers going strong that day and beyond for continued good health of mom and mental endurance for all of us. That day will be the starting day for a whole NEW adventure!
Much love and appreciation,
Kate
wolkate@bethel.edu
Saturday, June 4, 2011
These are a few of my favorite things...
The title of this blog was inspired by the ever wonderful Julie Andrews (http://www.youtube.com/watch?v=3tDXtrLRDN0&feature=related) and all the musicals I adore...
This is my on-going list of self discovery and things that I enjoy :)
1. I love dancing randomly (includes random dance parties) and watching other people dance (Ginger Rogers and Fred Astaire always make me smile)
2. I love laughing (and making others laugh)
3. Hugging if my favorite activities in the whole world, next to laughing
4. I love running, skipping, jumping, swimming, playing Frisbee, and generally being active
5. I love taking time to read a wonderful book
6. I love sunrises and sunsets
7. I love my mom, sisters, dad, step-mom, and all the rest of my marvelous family and friends!!!
8. I love walks-around my neighborhood, in parks, anywhere...
9. I enjoy sleeping in, since this rarely happens I truly treasure the moments it does.
10. I am an avid movie collector-I LOVE FILM!!! Specifically the moment I stop being aware of myself and the world around me and I am absorbed into the world the artist has created.
11. I love art-specially local artists!
12. I love movies in the park
13. I love breathing in deeply when walking past lilac trees and jasmine
14. I love to smile
15. I love laying on my back in the grass and looking at the stars
16. I love to find new foods to try and LOVE international cuisine
17. Breakfast is my favorite meal of the day and I am happy to eat it for all three meal times during a day-specially at Mickey's Diner in Saint Paul! :)
18. I LOVE the farmer's market
19. I love music! (specially discovering new favorite artists).
20. I love my passion/zest for life.
21. I love compassion
22. I love volunteering and taking time to help others
23. I love catching up with old (and new) friends
24. I love randomly dressing up in unusual outfits (ugly sweater parties/zombie pub crawls). This could explain why Halloween is my favorite holiday...
25. I love water-specially the ocean. But I also love lakes and rivers
26. I love camping
27. I love discovering fun places to eat/drink/be merry that are walking distance from my house
28. I love to hear about people's adventures in life, they inspire me to do more in mine
29. I love to blog/journal
30. I love getting enough sleep and feeling well rested the next morning
31. I love hearing childrens laughter
32. I love eating dessert first
33. I love making new friends (even though I get shy and nervous around new people)
34. I love a good beer on a warm summer night and baileys in hot chocolate during winter.
35. I love to cuddle
36. I love my (realistic) optimism about life
37. I love discussions about faith, life, and how to change the world
38. I love songs that pull me closer to my self (either emotionally or mentally). I also love powerful/moving lyrics. Current examples: Iron & Wine's "Walking Far From Home" (http://www.youtube.com/watch?v=fg5403yj4II&NR=1) and the Yeah Yeah Yeah's "Hysteric" (http://www.youtube.com/watch?v=93B2mSx6jjg)
39. I love taking pictures of life as it happens
40. I love my home
41. I love feeling comfortable in who I am
42. I love "people watching" (especially seeing joy and love in a stranger's eyes)
43. I loving knowing tomorrow is a new day and each day is a gift
44. I love seeing rainbows (double rainbows blow my mind)
45. I love movie previews
46. I love receiving snail mail/having a pen pal
47. I love being able to share my acquired knowledge with others and being able to help them understand (as well as learning from them in turn)
48. I love dangly earrings and other jewelry I can play with
49. I love the idea of traveling internationally and would love to in the future
50. I love bonfires, smores, and grilled food
(Well that's a start, to be continued) :)
This is my on-going list of self discovery and things that I enjoy :)
1. I love dancing randomly (includes random dance parties) and watching other people dance (Ginger Rogers and Fred Astaire always make me smile)
2. I love laughing (and making others laugh)
3. Hugging if my favorite activities in the whole world, next to laughing
4. I love running, skipping, jumping, swimming, playing Frisbee, and generally being active
5. I love taking time to read a wonderful book
6. I love sunrises and sunsets
7. I love my mom, sisters, dad, step-mom, and all the rest of my marvelous family and friends!!!8. I love walks-around my neighborhood, in parks, anywhere...
9. I enjoy sleeping in, since this rarely happens I truly treasure the moments it does.
10. I am an avid movie collector-I LOVE FILM!!! Specifically the moment I stop being aware of myself and the world around me and I am absorbed into the world the artist has created.
11. I love art-specially local artists!
12. I love movies in the park13. I love breathing in deeply when walking past lilac trees and jasmine
14. I love to smile
15. I love laying on my back in the grass and looking at the stars
16. I love to find new foods to try and LOVE international cuisine
17. Breakfast is my favorite meal of the day and I am happy to eat it for all three meal times during a day-specially at Mickey's Diner in Saint Paul! :)
18. I LOVE the farmer's market
19. I love music! (specially discovering new favorite artists).20. I love my passion/zest for life.
21. I love compassion
22. I love volunteering and taking time to help others
23. I love catching up with old (and new) friends
24. I love randomly dressing up in unusual outfits (ugly sweater parties/zombie pub crawls). This could explain why Halloween is my favorite holiday...
25. I love water-specially the ocean. But I also love lakes and rivers
26. I love camping27. I love discovering fun places to eat/drink/be merry that are walking distance from my house
28. I love to hear about people's adventures in life, they inspire me to do more in mine
29. I love to blog/journal
30. I love getting enough sleep and feeling well rested the next morning
31. I love hearing childrens laughter
32. I love eating dessert first
33. I love making new friends (even though I get shy and nervous around new people)
34. I love a good beer on a warm summer night and baileys in hot chocolate during winter.
35. I love to cuddle
36. I love my (realistic) optimism about life
37. I love discussions about faith, life, and how to change the world
38. I love songs that pull me closer to my self (either emotionally or mentally). I also love powerful/moving lyrics. Current examples: Iron & Wine's "Walking Far From Home" (http://www.youtube.com/watch?v=fg5403yj4II&NR=1) and the Yeah Yeah Yeah's "Hysteric" (http://www.youtube.com/watch?v=93B2mSx6jjg)
39. I love taking pictures of life as it happens
40. I love my home
41. I love feeling comfortable in who I am
42. I love "people watching" (especially seeing joy and love in a stranger's eyes)
43. I loving knowing tomorrow is a new day and each day is a gift
44. I love seeing rainbows (double rainbows blow my mind)
45. I love movie previews
46. I love receiving snail mail/having a pen pal
47. I love being able to share my acquired knowledge with others and being able to help them understand (as well as learning from them in turn)
48. I love dangly earrings and other jewelry I can play with
49. I love the idea of traveling internationally and would love to in the future
50. I love bonfires, smores, and grilled food
(Well that's a start, to be continued) :)
Friday, June 3, 2011
Ping Pong and Doctors
So for the last month or so I have visualized mom's (ECHO) Cardio doctor and mom's primary (Hematology) doctor as two opponents playing ping pong. They hit quick and hard balls into each others court, waiting and anticipating each other's responses. As observers of the rapid fire game, we would only catch what the outcome of each play was and wait to see which opponent would win out. Back and forth, back and forth.
The cardiologist was of the opinion that mom's heart was badly damaged, but that her AML would likely relapse before they could get her heart back to "healthy" standards. (That typically takes a minimum of 6 months). So he suggested that she proceed with transplant as soon as she was "symptomatically" healthy and they would CLOSELY/daily monitor her heart's output and adjust as needed on an inpatient basis. Though he would prefer to wait as long as possible-without risking mom's health-so the heart could improve.
The hematology doctor agreed with the cardiologist but wanted to get mom inpatient as soon as possible to prevent a risk of relapse of her leukemia. He, and my mom, really started pushing for transplant sooner than later as soon as she was outpatient. He agreed that mom needed to have a healthier heart but her AML was too aggressive to wait very long.
About two weeks ago, around the time of my last post, the two of them apparently talked to each other-instead of just reading each other's notes. (And the ping pong morphed into a dance, fast quick but in the same direction). Both doctor's agreed that mom needs to get to transplant- while she's still in remission. But her cardiologist insists on continued support, once mom goes inpatient, to monitor her heart. The hematologist agreed.
And so the follow up appointments with each of them individually continued. On the 25th we met with her cardiologist (after a ECHO to check on any improvement of her heart's output). It HAD IMPROVED!!! It went from 15-20% ejection fraction up to 30-35%!!!! (Technically anything below 30% is still "heart failure" and 40% is need for transplant but that is SHOCKING improvement for only one month outside the hospital!) :-D
Back to the cardiologists' analysis....He stated that mom again has 2 options:
1. Wait for 6 months, and see if the heart improves. (Though he noted at this time, symptomatically she's improved and it is possible that her improvement will "plateau" soon and not be able to improve any more. There is also the risk that her heart may never improve. So with that risk to consider, option 2 would be more highly advised).
2. Mom goes inpatient for transplant, and the day before her chemo (pre-transplant) starts cardiology will do an entire work up on her just to make sure they are fully aware of the risk and continue to support her through her transplant process. *He seemed to support this assessment* He stated, "We will be in tuned and ready. But we CAN'T eliminate the risk...This is not unfeasible. We have done this before for patients far worse than you. And it's better that we go in prepared. All things considered (and that you still have transplant to go through) you've made exponential progress. BUT we still have MAJOR obstacles ahead."
AND back to the hematologist/overall plan...
At this point, because of mom's heart's improvement, we are proceeding forward with transplant!
The details of the risk/process with be discussed in further details at mom's care conference-on the 8th and 11th-check caringbridge for the details. But here's a general summary for you:
Mom's pre-transplant prep will be less aggressive-since she's already in remission. The chemo and radiation they use will be a less aggressive dose, because there are less leukemia cells to get rid of and those left over can be killed off by the cord blood cells when they are entering mom's blood system.
The (double)cord blood's "engraftment" (attachment to mom's bone marrow and development of new cells/ "takeover") usually takes about 3 weeks (at a minimum) after the transplant occurs. Once mom's counts and appetite have come back and she is able to exercise regularly she will then be discharged. Likely between weeks 3-8 after transplant (depending on whether she has a successful engraftment and whether any infections or not). At this point the real battle begins and we will need all the support we can get!
The risks post transplant are:
- Rejection of the cord blood cells/ "graft failure"
- Infection
- Graft Verse Host Disease (GVHD this can be Acute-temporary, or Chronic-continual)
* This is when the cord blood cells are attacking mom's cells and can cause a physiological reaction: in the skin, liver or kidneys. This can present as nausea, vomiting, diarrhea, dry eyes, dry mouth, and skin rashs).
I will try to go into further details about the transplant and post transplant process in the next blog. Just wanted to give you the general summary of the last few weeks! Thanks everyone!
And again if you have the time to come to the care conferences I know it would mean a lot to us and likely help all of you understand more about mom's current journey and what to expect in the future! Details on the two sessions are on her caringbridge! Hope to see you all there!
The cardiologist was of the opinion that mom's heart was badly damaged, but that her AML would likely relapse before they could get her heart back to "healthy" standards. (That typically takes a minimum of 6 months). So he suggested that she proceed with transplant as soon as she was "symptomatically" healthy and they would CLOSELY/daily monitor her heart's output and adjust as needed on an inpatient basis. Though he would prefer to wait as long as possible-without risking mom's health-so the heart could improve.
The hematology doctor agreed with the cardiologist but wanted to get mom inpatient as soon as possible to prevent a risk of relapse of her leukemia. He, and my mom, really started pushing for transplant sooner than later as soon as she was outpatient. He agreed that mom needed to have a healthier heart but her AML was too aggressive to wait very long.
About two weeks ago, around the time of my last post, the two of them apparently talked to each other-instead of just reading each other's notes. (And the ping pong morphed into a dance, fast quick but in the same direction). Both doctor's agreed that mom needs to get to transplant- while she's still in remission. But her cardiologist insists on continued support, once mom goes inpatient, to monitor her heart. The hematologist agreed.
And so the follow up appointments with each of them individually continued. On the 25th we met with her cardiologist (after a ECHO to check on any improvement of her heart's output). It HAD IMPROVED!!! It went from 15-20% ejection fraction up to 30-35%!!!! (Technically anything below 30% is still "heart failure" and 40% is need for transplant but that is SHOCKING improvement for only one month outside the hospital!) :-D
Back to the cardiologists' analysis....He stated that mom again has 2 options:
1. Wait for 6 months, and see if the heart improves. (Though he noted at this time, symptomatically she's improved and it is possible that her improvement will "plateau" soon and not be able to improve any more. There is also the risk that her heart may never improve. So with that risk to consider, option 2 would be more highly advised).
2. Mom goes inpatient for transplant, and the day before her chemo (pre-transplant) starts cardiology will do an entire work up on her just to make sure they are fully aware of the risk and continue to support her through her transplant process. *He seemed to support this assessment* He stated, "We will be in tuned and ready. But we CAN'T eliminate the risk...This is not unfeasible. We have done this before for patients far worse than you. And it's better that we go in prepared. All things considered (and that you still have transplant to go through) you've made exponential progress. BUT we still have MAJOR obstacles ahead."
AND back to the hematologist/overall plan...
At this point, because of mom's heart's improvement, we are proceeding forward with transplant!
The details of the risk/process with be discussed in further details at mom's care conference-on the 8th and 11th-check caringbridge for the details. But here's a general summary for you:
Mom's pre-transplant prep will be less aggressive-since she's already in remission. The chemo and radiation they use will be a less aggressive dose, because there are less leukemia cells to get rid of and those left over can be killed off by the cord blood cells when they are entering mom's blood system.
The (double)cord blood's "engraftment" (attachment to mom's bone marrow and development of new cells/ "takeover") usually takes about 3 weeks (at a minimum) after the transplant occurs. Once mom's counts and appetite have come back and she is able to exercise regularly she will then be discharged. Likely between weeks 3-8 after transplant (depending on whether she has a successful engraftment and whether any infections or not). At this point the real battle begins and we will need all the support we can get!
The risks post transplant are:
- Rejection of the cord blood cells/ "graft failure"
- Infection
- Graft Verse Host Disease (GVHD this can be Acute-temporary, or Chronic-continual)
* This is when the cord blood cells are attacking mom's cells and can cause a physiological reaction: in the skin, liver or kidneys. This can present as nausea, vomiting, diarrhea, dry eyes, dry mouth, and skin rashs).
I will try to go into further details about the transplant and post transplant process in the next blog. Just wanted to give you the general summary of the last few weeks! Thanks everyone!
And again if you have the time to come to the care conferences I know it would mean a lot to us and likely help all of you understand more about mom's current journey and what to expect in the future! Details on the two sessions are on her caringbridge! Hope to see you all there!
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