Well a little faster than we imagined, Mom has gone home to Heaven. I'll have a more detailed write-up of everything tonight, but she passed at 7:36 PM surrounded by many of us. In the meantime, I wanted to post tentative funeral arrangements. These are yet to be confirmed, but I know many would like to make plans and / or have heard from family members so I wanted to get in front of it.
Tuesday Evening, 1.4: Visitation, Rosary, and a Boy Scout Memorial
Wednesday, 1.5 (TBD - targeting mid-morning): Funeral service at Church of the Ascension in Overland Park, KS followed by a reception and meal
Thursday, 1.6: Graveside burial @ Highland Cemetery in Winfield, KS followed by a reception and meal
All events will be focused on celbrating her life as she wanted.
There is a bereavement travel service for those needing to fly in from other places. I would recommend waiting until the timelines are solidified, but the funeral home director highly recommended this place as they hold seats on airlines and should be able to offer competitive prices as well as have some availability.
Dignity Memorial Bereavement Travel Program
Phone: 800.224.4177
They will need the following questions answered:
- Name of the Funeral Home: McGilley Memorial Chapels
- Name of the Deceased: Cathi Maynard
- Reference Number: 2520
Lots of love,
Conor, Mark, and Family
Friday, December 31, 2010
Thursday, December 30, 2010
Thurs, 12.30 - Transitioning to Heaven
I really had no other way to title this post. The last day and a half has been surreal as Mom's begun her transition to Heaven.
Yesterday she was less alert than she had been and really only awake for a few hours in the morning. She did ask what day it was at one point. When we told her it was Wednesday, she put her hands up as if to say 'where does the time go?'. She also managed to drink a little tea and have a banana split with butter pecan ice cream and caramel coating. She also confirmed that her birthday was today. Unfortunately now that today's here I'm fairly certain she doesn't know it is.
After Wednesday morning, she began doing more of the things that the book the hospice group gave us said she would - picking at her clothes, mumbling incoherently, spiking a fever, and sleeping with her eyes slightly open. The book walks you through some of the end of life symptoms and is titled 'Gone From My Sight'. It's been helpful to gauge just where we are. One thing she has not done that some of you may have had loved ones do is talk to those who have gone before her. At least she hasn't said names that we can recognize.
Today's been extremely hard on all of us with it being her birthday and Grandpa and Grandma's wedding anniversary. There have been a lot of tears, talking about funeral arrangements, and sitting at her bedside holding her hand and talking to her. While she has only said a few things that are understandable, we're fairly certain she knows who is here and understands some things we say. She's given a couple of hugs and smiles, which make us all smile.
One thing the nurse mentioned yesterday that has been apparent is once a person starts to go, the pace at which they are going does not tend to slow. If anything, it quickens. That was just based on how much she had changed from Monday to Wednesday. When she returned today, I asked what it looked like now as near as most of us could tell it was going to be soon. She estimated today that we're a couple of days away. Her feeling is Mom will fall asleep and maintain that way for a while before leaving us. For me personally, it would be fitting for her to go on New Year's Day as that's when her Grandma Snell passed away (1.1.00). And Mom was extremely close to all of her Grandparents, filling us all with more stories than one could imagine. She's always been sort of a 'link' to the family's past in this regard.
The hardest thing about this time is it really looks like Mom will wake up and start talking to you. That or that she really has something to say. It's both frustrating and hard as we know that she won't.
All this aside, we keep telling her that we'll be ok. She needs to know from all of us that it's ok to go see those who have passed before her in Heaven and hug them, tell her great stories, not wear hearing aids, and look down upon all of us with her watchful eyes. Aunt Lori put it best when she said that we know she'll still be taking care of all of us b/c that's what she's always done. As the oldest of 7, Mom has always been a caretaker - an amazing one.
Given the nature of this post, I want to leave on a funny note. As I've alluded to earlier, Mom's always had an amazing sense of humor regarding her hearing loss. Two days ago the nurse's aides came to give her a shower. Afterwards, Mom was leaving her room with her chin tucked to her chest. The aide said, 'she says her neck hurts.' So I said, 'Mom, does your neck hurt?' In classic Mom voice, she said, 'Nuts? Conor, I don't have nuts. I have ovaries!' Man I'll miss those comments. :)
Yesterday she was less alert than she had been and really only awake for a few hours in the morning. She did ask what day it was at one point. When we told her it was Wednesday, she put her hands up as if to say 'where does the time go?'. She also managed to drink a little tea and have a banana split with butter pecan ice cream and caramel coating. She also confirmed that her birthday was today. Unfortunately now that today's here I'm fairly certain she doesn't know it is.
After Wednesday morning, she began doing more of the things that the book the hospice group gave us said she would - picking at her clothes, mumbling incoherently, spiking a fever, and sleeping with her eyes slightly open. The book walks you through some of the end of life symptoms and is titled 'Gone From My Sight'. It's been helpful to gauge just where we are. One thing she has not done that some of you may have had loved ones do is talk to those who have gone before her. At least she hasn't said names that we can recognize.
Today's been extremely hard on all of us with it being her birthday and Grandpa and Grandma's wedding anniversary. There have been a lot of tears, talking about funeral arrangements, and sitting at her bedside holding her hand and talking to her. While she has only said a few things that are understandable, we're fairly certain she knows who is here and understands some things we say. She's given a couple of hugs and smiles, which make us all smile.
One thing the nurse mentioned yesterday that has been apparent is once a person starts to go, the pace at which they are going does not tend to slow. If anything, it quickens. That was just based on how much she had changed from Monday to Wednesday. When she returned today, I asked what it looked like now as near as most of us could tell it was going to be soon. She estimated today that we're a couple of days away. Her feeling is Mom will fall asleep and maintain that way for a while before leaving us. For me personally, it would be fitting for her to go on New Year's Day as that's when her Grandma Snell passed away (1.1.00). And Mom was extremely close to all of her Grandparents, filling us all with more stories than one could imagine. She's always been sort of a 'link' to the family's past in this regard.
The hardest thing about this time is it really looks like Mom will wake up and start talking to you. That or that she really has something to say. It's both frustrating and hard as we know that she won't.
All this aside, we keep telling her that we'll be ok. She needs to know from all of us that it's ok to go see those who have passed before her in Heaven and hug them, tell her great stories, not wear hearing aids, and look down upon all of us with her watchful eyes. Aunt Lori put it best when she said that we know she'll still be taking care of all of us b/c that's what she's always done. As the oldest of 7, Mom has always been a caretaker - an amazing one.
Given the nature of this post, I want to leave on a funny note. As I've alluded to earlier, Mom's always had an amazing sense of humor regarding her hearing loss. Two days ago the nurse's aides came to give her a shower. Afterwards, Mom was leaving her room with her chin tucked to her chest. The aide said, 'she says her neck hurts.' So I said, 'Mom, does your neck hurt?' In classic Mom voice, she said, 'Nuts? Conor, I don't have nuts. I have ovaries!' Man I'll miss those comments. :)
Tuesday, December 28, 2010
Tues, 12.28 - Tradeoffs
Since about 4 PM yesterday, sleep's been the theme. Mom's been awake for about 3 hours this morning to chat with Grandma and Grandpa then Walt stopped by. She was also able to get a nice shower with the nurse's aid early this afternoon (although she was a lot weaker going up and down the stairs than just a few days ago). When she's awake, there's a definite degree of confusion that's there. I thought perhaps it was the Roxanol (liquid morphine) that I gave her yesterday to help out with her breathing and hacking, but seems that wasn't the only thing causing her confusion as it was a long time between doses and she continues to be somewhat confused.
She has been hacking a lot less, which is awesome. I've been giving her more of the drug (Atropene) we got for managing her lung secretions as well. It sure helps us all to not see her coughing like she was. I also just read Abby's comment on the last post and yep - that's what we're doing.
The tradeoffs title is based on the fact that every decision we make has tradeoffs. If we give her platelets, she may not have blood in her cough but it could suffocate her b/c of fluid in her lungs and a lack of activity. If we don't give her morphine, she may be more coherent but may cough and hack more. I talked to Nurse Amy yesterday and she said if she were to be in a Hospice care facility they would have equipment to suck some of the blood and other hacking out, but she's not at home. It's truly a balance. The goal for all of us is to keep her at home and mitigate pain. Thus far we've been succssful and will continue to keep those goals in mind.
She has been hacking a lot less, which is awesome. I've been giving her more of the drug (Atropene) we got for managing her lung secretions as well. It sure helps us all to not see her coughing like she was. I also just read Abby's comment on the last post and yep - that's what we're doing.
The tradeoffs title is based on the fact that every decision we make has tradeoffs. If we give her platelets, she may not have blood in her cough but it could suffocate her b/c of fluid in her lungs and a lack of activity. If we don't give her morphine, she may be more coherent but may cough and hack more. I talked to Nurse Amy yesterday and she said if she were to be in a Hospice care facility they would have equipment to suck some of the blood and other hacking out, but she's not at home. It's truly a balance. The goal for all of us is to keep her at home and mitigate pain. Thus far we've been succssful and will continue to keep those goals in mind.
Sunday, December 26, 2010
Sun, 12.26 - Day after Christmas
Christmas Eve started with a bang. Mom got up and wanted to go to her parents' house so Mark obliged and schlepped her over there. He wasn't sure why they went, but took her anyway and she took up residence there through this morning.
That did enable her to see a lot of people the past few days although I'm fairly certain she would've seen them anyway b/c everybody wants to get in a visit! There was a family dinner yesterday and Mom stayed in Grandma and Grandpa's bedroom while people shuttled in and out to chat, hug, and take some pictures. There are some good ones of her and her siblings that were there - Janice, Lori, Trish, and Walt. I'd post, but they're still on a camera that I don't have available.
This morning she saw a couple of nieces prior to coming back here. I also gave her the photobook that Anners put together with HB and Ella pics from the year (f you haven't seen one of these off Kodak Gallery or other photo websites, I highly recommend them). There are pics in there from when she held Ella in the initial hours and days after she was born. We also watched the Chiefs win today and get some help to clinch their division. She was quite pleased with their win although no Tomahawk Chop. :)
Tonight she spiked a slight fever so she's taken some Tylenol and we're waiting on the hospice nurse to stop in and check on her. I've got a list of a few things to ask about - sponge toothbrushes (like she had in the hospital) and whether there's potentially a blood clot in her esophagus that is causing some of the hacking / wommitting. Several months back she had this and it was due to a lack of platelets. Given where we are with her treatment where transfusions are risky, I'm not sure what can be done but we're hoping there's a drug that will help dissipate it and provide some relief.
It's safe to say there are fewer clear moments than there were when I last wrote. That being said, she's been awake a lot more the past couple of days than she was. I'm honestly not sure which is best as when she's awake she does cough and that often brings wommitting. It's not that there's any food in there though so it's not what most of you would be used to seeing. And when she's asleep it's very peaceful to watch.
Ok, I think that's it. Just wanted to catch everybody up on how she spent the holiday and is doing now.
That did enable her to see a lot of people the past few days although I'm fairly certain she would've seen them anyway b/c everybody wants to get in a visit! There was a family dinner yesterday and Mom stayed in Grandma and Grandpa's bedroom while people shuttled in and out to chat, hug, and take some pictures. There are some good ones of her and her siblings that were there - Janice, Lori, Trish, and Walt. I'd post, but they're still on a camera that I don't have available.
This morning she saw a couple of nieces prior to coming back here. I also gave her the photobook that Anners put together with HB and Ella pics from the year (f you haven't seen one of these off Kodak Gallery or other photo websites, I highly recommend them). There are pics in there from when she held Ella in the initial hours and days after she was born. We also watched the Chiefs win today and get some help to clinch their division. She was quite pleased with their win although no Tomahawk Chop. :)
Tonight she spiked a slight fever so she's taken some Tylenol and we're waiting on the hospice nurse to stop in and check on her. I've got a list of a few things to ask about - sponge toothbrushes (like she had in the hospital) and whether there's potentially a blood clot in her esophagus that is causing some of the hacking / wommitting. Several months back she had this and it was due to a lack of platelets. Given where we are with her treatment where transfusions are risky, I'm not sure what can be done but we're hoping there's a drug that will help dissipate it and provide some relief.
It's safe to say there are fewer clear moments than there were when I last wrote. That being said, she's been awake a lot more the past couple of days than she was. I'm honestly not sure which is best as when she's awake she does cough and that often brings wommitting. It's not that there's any food in there though so it's not what most of you would be used to seeing. And when she's asleep it's very peaceful to watch.
Ok, I think that's it. Just wanted to catch everybody up on how she spent the holiday and is doing now.
Thursday, December 23, 2010
Thurs, 12.23 - Pre-Christmas Post
Today marks one week until Mom's 57th birthday. Please don't tell her I posted her age to everyone. :) It's been a hectic last few days as evidenced by the fact that last night's post was actually drafted on Monday night and I hurriedly posted it just b/c it was losing its relevancy quickly. So let me see if I can recap where we are now as I prepare to head back to Chicago in 12 hours. I'm headed back home for Christmas then returning the morning of the 26th.
As Gail mentioned in her comment to the last post, Tuesday and Wednesday mornings consisted of completing the video of her life. And we're looking for some additional scouting pictures to include in it.
Mornings continue to be when Mom's most alert and able to engage in conversation. Sure, she still dozes off mid-sentence and takes her naps. But compared to the afternoon, especially after 3 - 4 or so, it's ALERT. We also have foregone any visits to the clinic and this morning made the decision to not go back at all. This was after a conversation with Nurse Amy where we learned that the TPN and any transfusions would actually be detrimental to her lungs. The fact is she's not really moving around a lot and there's already fluid in her lungs. So tranfusions and TPN will not have the impact you would think - prolonging the inevitable. Instead we have changed antibiotics to help her body with this fluid and make her more comfortable than the constant gagging and wommitting of flem and fluids.
Yesterday brought a visit from Father Tom Tank to offer the Annointing of the Sick sacrament for Mom. We all participated in the prayers and annointment. It was beautiful. We also discussed funeral arrangements and got a laugh when Mom wanted to make sure Father had all of the plans regarding pallbearers, readings (and readers), etc. that we've been working on the past few months. I had to remind her that he's used to planning a funeral with a lot less warning than he has here. :) It was a light-hearded moment that made us all chuckle - Mom included.
Mark and I have started going through all of the medical bills and statements as well as catching up the company books. There's been a lot of progress, but rest assured it's the bulk of what we'll have to tackle in the coming weeks. It was actually funny yesterday when I brought some documents to Mom for her signature and she wanted to jump in front of the office computer to do it. I had to laugh and reel her in! First I told her that if she wasn't here then we would have to figure it out anyway. 'True' was her response. Then I told her that we do not want her working during these times and instead focusing on things she has energy to do and wants to do. Not for nothing, for most of us that is not work.
This morning that meant working on something Mom decided she wanted to do in addition to the video upon learning of the mortality associated with chloromas. She's documented a list of activities for both of my kids that she's inserting into birthday cards for them. I'm not sure she'll get all of the cards signed and written in as she insists she wants to, but these babies will forever have Grandma Cathi present in their lives thanks to this ongoing present she's left them. Whether it's a cultural trip, family event, or other task she's assigned them for their birthday, it will all be for her. We all look forward to remembering her and ensuring that she lives on for not just the grandkids - but all of us.
We tried to get together and head to the Plaza to see the Christmas lights one more time. She mentioned the other day that was one thing she really wanted to do. Unfortunately by the time it's dark enough for the lights, it's dicey whether she'll be awake and able to go. We're hoping we can get her there sometime in the next few days though. Stay tuned.
In a very nice way, the last few days have been extremely peaceful and calming. For 2.5 years, Mom has had her ups and downs, often times having survival in her grasp only to have it yanked back again. Now we have a plan where we actually know the end. And while I cannot pretend to know what it's like to be in her shoes, she's going through this just like the rest of her life - with beauty and class.
Love to all this holiday season and Merry Christmas to most. My next post is not likely to be until 12.26.
As Gail mentioned in her comment to the last post, Tuesday and Wednesday mornings consisted of completing the video of her life. And we're looking for some additional scouting pictures to include in it.
Mornings continue to be when Mom's most alert and able to engage in conversation. Sure, she still dozes off mid-sentence and takes her naps. But compared to the afternoon, especially after 3 - 4 or so, it's ALERT. We also have foregone any visits to the clinic and this morning made the decision to not go back at all. This was after a conversation with Nurse Amy where we learned that the TPN and any transfusions would actually be detrimental to her lungs. The fact is she's not really moving around a lot and there's already fluid in her lungs. So tranfusions and TPN will not have the impact you would think - prolonging the inevitable. Instead we have changed antibiotics to help her body with this fluid and make her more comfortable than the constant gagging and wommitting of flem and fluids.
Yesterday brought a visit from Father Tom Tank to offer the Annointing of the Sick sacrament for Mom. We all participated in the prayers and annointment. It was beautiful. We also discussed funeral arrangements and got a laugh when Mom wanted to make sure Father had all of the plans regarding pallbearers, readings (and readers), etc. that we've been working on the past few months. I had to remind her that he's used to planning a funeral with a lot less warning than he has here. :) It was a light-hearded moment that made us all chuckle - Mom included.
Mark and I have started going through all of the medical bills and statements as well as catching up the company books. There's been a lot of progress, but rest assured it's the bulk of what we'll have to tackle in the coming weeks. It was actually funny yesterday when I brought some documents to Mom for her signature and she wanted to jump in front of the office computer to do it. I had to laugh and reel her in! First I told her that if she wasn't here then we would have to figure it out anyway. 'True' was her response. Then I told her that we do not want her working during these times and instead focusing on things she has energy to do and wants to do. Not for nothing, for most of us that is not work.
This morning that meant working on something Mom decided she wanted to do in addition to the video upon learning of the mortality associated with chloromas. She's documented a list of activities for both of my kids that she's inserting into birthday cards for them. I'm not sure she'll get all of the cards signed and written in as she insists she wants to, but these babies will forever have Grandma Cathi present in their lives thanks to this ongoing present she's left them. Whether it's a cultural trip, family event, or other task she's assigned them for their birthday, it will all be for her. We all look forward to remembering her and ensuring that she lives on for not just the grandkids - but all of us.
We tried to get together and head to the Plaza to see the Christmas lights one more time. She mentioned the other day that was one thing she really wanted to do. Unfortunately by the time it's dark enough for the lights, it's dicey whether she'll be awake and able to go. We're hoping we can get her there sometime in the next few days though. Stay tuned.
In a very nice way, the last few days have been extremely peaceful and calming. For 2.5 years, Mom has had her ups and downs, often times having survival in her grasp only to have it yanked back again. Now we have a plan where we actually know the end. And while I cannot pretend to know what it's like to be in her shoes, she's going through this just like the rest of her life - with beauty and class.
Love to all this holiday season and Merry Christmas to most. My next post is not likely to be until 12.26.
Monday, December 20, 2010
Mon, 12.20 - Palliative Care Begins
Conor again. I almost feel like it's safe to say at this point any post on the blog will be coming from me. So unless you hear otherwise, assume it's me!
Mark and I arrived in KC yesterday to help plan some of the things we need to do in the coming weeks. First on the docket was seeing Mom and figuring out priorities. The easiest observation was her quick deterioration in her energy and strength in just one week. Walking up the stairs unaided is out of the question. She is sleeping a lot and at times is less than coherent. We do laugh after the fact about some of these comments. You have to.
Fortunately she's been pretty good the last 2 days and it's nothing more than her typical 'hearing challenged' repeats. An example of her mishearing something was yesterday when Janice (who recently had foot surgery) mentioned she has a bruise slowly growing through her foot and outside of her walking boot. Mom couldn't make that out and said, 'You have a spruce tree growing in your foot?' Literally just laughed as I typed that one... Trust me though, for those of you who don't know her - we've been laughing about her interpretation of what we say for 30 years. And she has a great sense of humor about it. After all, she does have very strong hearing aids and it's going to happen. Sure makes it easier when she laughs too.
This drop in energy levels required us to make a decision where she will spend the rest of her earthly time. After much discussion, she will be at her house and we're currently utilizing the services of a palliative care agency. They've been great and within hours had a hospital bed out. So she's set-up in her family room w/ the furniture rearranged to accomodate the rest of us sitting around, watching tv, chatting, etc. Often times she dozes off in the middle of these chats as it really does take a lot of work for her to keep up.
Gail also flew in Monday night to help complete her life video as Mom insists on her producing this after the way it had started. We'll be sure to share portions at the appropriate time.
Lastly, I should point out there are many projections out there on how long Mom will be around. We heard from some of the nurses that it may not be longer than a few weeks based on previous patients they've seen. That would be a little shorter than the doctors, but really - does it matter? We're enjoying time, getting things done, and crying appropriately.
Saturday, December 18, 2010
Sat, 12.18
Conor back for another round...
First, thanks to everyone for the kind thoughts after the last post. I think there are very few people in our family that haven't heard someone who's praying for them and us. It sure means a lot and honestly has the past 2.5 years. I'll be having a beer with someone that I see occasionally and they'll say, 'oh hey, how's your mom doing? I've been reading the blog and she seems like she's doing...' It's amazing how many readers there are that we don't even hear about. Just awesome.
Anyway, so yesterday we got prelminary results from the bone marrow biopsy - final results are expected next week. We knew by doing the biopsy we may not like what we would find, but as a family we wanted to better set our expectations. Even Abhyankar said something similar to that when I talked to him to schedule it. I think his exact words were 'I'm fraid what we'll find.' But he understood our desire to know.
The results are not positive. 17% leukemic cells in mom's marrow. This was probably worse than I even imagined as I was hoping maybe the leukemic cells, if they existed, were less than the 11.2% that's mom's blood. Translation - she has less than the 4 - 6 months we were hoping for. It's probably closer to 6 - 10 weeks. So we're moving forward with lining up some palliative care, hospice, and in-home healthcare resources to help out with keeping her comfortable.
I'm heading to KC on Monday to work through some more things related to her care and business. For her clients, you may be hearing from me over the coming weeks as we figure out where we go from here.
First, thanks to everyone for the kind thoughts after the last post. I think there are very few people in our family that haven't heard someone who's praying for them and us. It sure means a lot and honestly has the past 2.5 years. I'll be having a beer with someone that I see occasionally and they'll say, 'oh hey, how's your mom doing? I've been reading the blog and she seems like she's doing...' It's amazing how many readers there are that we don't even hear about. Just awesome.
Anyway, so yesterday we got prelminary results from the bone marrow biopsy - final results are expected next week. We knew by doing the biopsy we may not like what we would find, but as a family we wanted to better set our expectations. Even Abhyankar said something similar to that when I talked to him to schedule it. I think his exact words were 'I'm fraid what we'll find.' But he understood our desire to know.
The results are not positive. 17% leukemic cells in mom's marrow. This was probably worse than I even imagined as I was hoping maybe the leukemic cells, if they existed, were less than the 11.2% that's mom's blood. Translation - she has less than the 4 - 6 months we were hoping for. It's probably closer to 6 - 10 weeks. So we're moving forward with lining up some palliative care, hospice, and in-home healthcare resources to help out with keeping her comfortable.
I'm heading to KC on Monday to work through some more things related to her care and business. For her clients, you may be hearing from me over the coming weeks as we figure out where we go from here.
Wednesday, December 15, 2010
Tues, 12.14 - Family Meeting
Conor reporting here...
Tuesday was another visit to the clinic after all of us (Mark, Annie, the kids, and me) were in KC for an extended weekend - originally intended to be 4 days and extended to 5 due to some lovely Chicago weather that kept us in KC. We celebrated Christmas Saturday night with some Jackstack BBQ and gifts, and had such a great time.
The clinic vist was a bit of a different story. When we got to KC, Mom had been able to do very little in the way of eating or drinking and was extremely lethargic - difficulty staying awake, having coherent conversations, etc. So we scheduled a family meeting with the doctors and in the meantime she got on TPN and started feeling a lot better. She was able to pick up the kids, laugh, and enjoy the rest of the visit.
When she got to the clinic Tuesday, there was good news. All counts were positive enough that she needed no transfusions. That made two days in a row so we were hoping for the best. Then Dr. Abhyankar started the conference...
Mom's % donor has slipped from 98.4% Walt to 88.2% in a month. And Mom's cells do have the 5q- cells present. He explained this was concerning as it's not just a 10 point slip, it's a 10X slip. Things are moving in the wrong direction, leaving us with 3 options:
1. Increase the Revlimid dosage from 5 mg to 10. This is designed to suppress the 5q- so could slow the graft slippage. Revlimid brings additional GI issues and lower blood counts all the way around. We can do a bone marrow biopsy to determine what's in the actual marrow although Dr. A thinks this will likely tell us the graft is even worse as blood lags the marrow. But it will help us understand how much Revlimid could do. It will also help us understand if the marrow already has leukemic cells or blasts present.
2. Utilize a booster from Walt's cells. This is extremely risky due to the fact she already has GVHD and could present very adverse results in quick fashion.
3. Do nothing and maintain as we are.
Obviously none of these options are good. 2 brings a lot of risk, 1 would extend things with a quality of life sacrifice in the short-term, and 3 isn't great either. We are proceeding with 1 this week with marrow results forthcoming. Mom will need to continue to take TPN for her nutrition and carry the backpack around. Eventually 3 will be the choice. We're just not sure when.
Where does this truly leave us? Truth is, this is what we know. Dr. A said it's likely there are 2 - 4 months left with no more than 6. We will likely have a better idea after the biopsy results are back although nobody expects a true estimation as that wouldn't be recommended medical practice. Once the graft does slip completely, Mom should have window of time where she feels much better than she does right now. We will seize that window and enjoy it plus whatever time we have left.
I also want to point out that these doctors are having as hard of a time with this as we are. Amy mentioned she saw Dr. A get choked up talking about Mom, something she's never seen in 6 years of working with him. It's safe to say McGuirk, Ganguly, and Aljitawi all feel the same. And the nurses...wow, they are so close to Mom that I shudder to think what they are feeling. The reason I want to point all this out is b/c even while fighting this horrible disease, Mom has continued to make a huge impact on everyone she touches. We are so blessed to have her as our Mom / Grandma Cathi / Mother-in-law / Daughter / Sister / Aunt / Friend.
In conclusion, I want everybody to know that we are doing everything we can to ensure the greatest % of the time remaining is QUALITY. Even though the news is not shocking, it doesn't make it any easier to absorb. We're all still reeling a bit prior to getting our heads around these end of life activities that we all want to ensure are completed. And we will hang onto the positives over the coming months - laughing, crying, and loving.
Tuesday was another visit to the clinic after all of us (Mark, Annie, the kids, and me) were in KC for an extended weekend - originally intended to be 4 days and extended to 5 due to some lovely Chicago weather that kept us in KC. We celebrated Christmas Saturday night with some Jackstack BBQ and gifts, and had such a great time.
The clinic vist was a bit of a different story. When we got to KC, Mom had been able to do very little in the way of eating or drinking and was extremely lethargic - difficulty staying awake, having coherent conversations, etc. So we scheduled a family meeting with the doctors and in the meantime she got on TPN and started feeling a lot better. She was able to pick up the kids, laugh, and enjoy the rest of the visit.
When she got to the clinic Tuesday, there was good news. All counts were positive enough that she needed no transfusions. That made two days in a row so we were hoping for the best. Then Dr. Abhyankar started the conference...
Mom's % donor has slipped from 98.4% Walt to 88.2% in a month. And Mom's cells do have the 5q- cells present. He explained this was concerning as it's not just a 10 point slip, it's a 10X slip. Things are moving in the wrong direction, leaving us with 3 options:
1. Increase the Revlimid dosage from 5 mg to 10. This is designed to suppress the 5q- so could slow the graft slippage. Revlimid brings additional GI issues and lower blood counts all the way around. We can do a bone marrow biopsy to determine what's in the actual marrow although Dr. A thinks this will likely tell us the graft is even worse as blood lags the marrow. But it will help us understand how much Revlimid could do. It will also help us understand if the marrow already has leukemic cells or blasts present.
2. Utilize a booster from Walt's cells. This is extremely risky due to the fact she already has GVHD and could present very adverse results in quick fashion.
3. Do nothing and maintain as we are.
Obviously none of these options are good. 2 brings a lot of risk, 1 would extend things with a quality of life sacrifice in the short-term, and 3 isn't great either. We are proceeding with 1 this week with marrow results forthcoming. Mom will need to continue to take TPN for her nutrition and carry the backpack around. Eventually 3 will be the choice. We're just not sure when.
Where does this truly leave us? Truth is, this is what we know. Dr. A said it's likely there are 2 - 4 months left with no more than 6. We will likely have a better idea after the biopsy results are back although nobody expects a true estimation as that wouldn't be recommended medical practice. Once the graft does slip completely, Mom should have window of time where she feels much better than she does right now. We will seize that window and enjoy it plus whatever time we have left.
I also want to point out that these doctors are having as hard of a time with this as we are. Amy mentioned she saw Dr. A get choked up talking about Mom, something she's never seen in 6 years of working with him. It's safe to say McGuirk, Ganguly, and Aljitawi all feel the same. And the nurses...wow, they are so close to Mom that I shudder to think what they are feeling. The reason I want to point all this out is b/c even while fighting this horrible disease, Mom has continued to make a huge impact on everyone she touches. We are so blessed to have her as our Mom / Grandma Cathi / Mother-in-law / Daughter / Sister / Aunt / Friend.
In conclusion, I want everybody to know that we are doing everything we can to ensure the greatest % of the time remaining is QUALITY. Even though the news is not shocking, it doesn't make it any easier to absorb. We're all still reeling a bit prior to getting our heads around these end of life activities that we all want to ensure are completed. And we will hang onto the positives over the coming months - laughing, crying, and loving.
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