Good news! Kim is still healthy, and has been having a nice time being away from the hospital. There's really not much to say aside from that- what she's been doing hasn't been all that different: watching movies, taking naps, and sending a million text messages- but it makes all the difference in the world to be doing it from home!
We're still planning on her going back to PCMC on Monday, and I'll let you know if anything new comes up!
The Story of our Beloved Kim (May 30, 1991 - March 31, 2011) and Her Battle with AML Leukemia
Friday, January 28, 2011
Thursday, January 27, 2011
Yesterday brought bigger news than I was expecting! As it turns out, Kim's bone marrow is still 50% Leukemic cells. Not really the greatest results. This means that the next round of chemo they do will be extra rough, and will start as soon as possible. One of the drugs is quite rare, and has to be shipped in. It won't arrive until Monday, so her doctors told her and mom that they could just go home for a couple of days, even though her counts aren't really that high. They think that a break away from it all will be worth it- if she behaves while at home.
SO- they packed up her room and drove back to Logan yesterday, getting in later last night. She's just planning on relaxing for these few days, and enjoying being home.
If you are considering stopping by to see her, please just keep to the same rules that she has for hospital visits. She's still very vulnerable. But she does love all of you so much, and wishes she didn't have to be so cooped up.
We haven't heard anything new on the bone marrow donor front. We're still waiting for them to decide if one of the five potentials will be a best match for her.
Thanks everyone!!!
SO- they packed up her room and drove back to Logan yesterday, getting in later last night. She's just planning on relaxing for these few days, and enjoying being home.
If you are considering stopping by to see her, please just keep to the same rules that she has for hospital visits. She's still very vulnerable. But she does love all of you so much, and wishes she didn't have to be so cooped up.
We haven't heard anything new on the bone marrow donor front. We're still waiting for them to decide if one of the five potentials will be a best match for her.
Thanks everyone!!!
Monday, January 24, 2011
Bone Marrow Aspirate
Kim had her bone marrow aspirate (test) today. We should have the results some time tomorrow, and then we'll have a good idea as to if Kim will get much of a break before her next round of chemo, and how intense that is going to need to be. (WE'RE PRAYING SHE'S KNOCKED THAT LEUKEMIA RIGHT OUT OF HER SYSTEM!!)
She's been feeling better day by day, and for all that she still has trouble with pain and sleeping, and nausea a bit, we can at least be grateful that she hasn't gotten sick. Still no blood counts coming back, but we're hoping it will be just a few days more.
Tomorrow will be an important update. Thank you all for standing by!
She's been feeling better day by day, and for all that she still has trouble with pain and sleeping, and nausea a bit, we can at least be grateful that she hasn't gotten sick. Still no blood counts coming back, but we're hoping it will be just a few days more.
Tomorrow will be an important update. Thank you all for standing by!
Wednesday, January 19, 2011
Bone Marrow Donors
As I mentioned in the last post, the doctors here at PCMC have found five bone marrow matches for Kim in the registry, and two potential cord matches. Now is when they start to look at the individuals, making sure that one, or any of them, will still be able to be Kim's donor.
We would like to make a special request, of all of you... We've heard that it often happens that a person may no longer be able to donate, either because of health issues, or choice. As Kim only has five matches, it's possible that none of them will go through. So, if you could please pray for the donors- so that they might be able to donate to Kim, and hopefully others who are in need as well.
Kim had a few blood counts yesterday, but none again today. Still, we're hoping that it won't be too much longer before they're up. Her next aspirate (bone marrow test- to see how much of the Leukemia is still left) will be some time next week. We're hoping she might be able to come home for a couple of days after she's recovered most of the way, just to finish the job. However, this is such a critical time for her, and it's important to get to the transplant stage as fast as possible, so they might just try to keep her. (Notice that I said "try"! Our Kim's a tough one to keep down!)
Kim has some fun today learning meditation techniques from an alternate medications doctor at PCMC. Because pain and sleep medications don't really work all that well for her, and she really needs to be limiting the amount of drugs that she takes into her body, she's going to try to learn some tricks. Quite the opposite to her usual Up, Run, Go! attitude!
Thank you all as always- not a day goes by that I don't think of how different all of this would be without your thoughts and prayers.
Much love, Emily
We would like to make a special request, of all of you... We've heard that it often happens that a person may no longer be able to donate, either because of health issues, or choice. As Kim only has five matches, it's possible that none of them will go through. So, if you could please pray for the donors- so that they might be able to donate to Kim, and hopefully others who are in need as well.
Kim had a few blood counts yesterday, but none again today. Still, we're hoping that it won't be too much longer before they're up. Her next aspirate (bone marrow test- to see how much of the Leukemia is still left) will be some time next week. We're hoping she might be able to come home for a couple of days after she's recovered most of the way, just to finish the job. However, this is such a critical time for her, and it's important to get to the transplant stage as fast as possible, so they might just try to keep her. (Notice that I said "try"! Our Kim's a tough one to keep down!)
Kim has some fun today learning meditation techniques from an alternate medications doctor at PCMC. Because pain and sleep medications don't really work all that well for her, and she really needs to be limiting the amount of drugs that she takes into her body, she's going to try to learn some tricks. Quite the opposite to her usual Up, Run, Go! attitude!
Thank you all as always- not a day goes by that I don't think of how different all of this would be without your thoughts and prayers.
Much love, Emily
Sunday, January 16, 2011
Alright, I'm sorry! I've been so caught up in my own selfish time with Kim (at least on the weekends) that I've really started to slack in the blogging department. But don't worry, you really haven't missed Too much:
Kim has been very, very groggy and nauseated for the past couple of weeks. We all knew it was some sort of medication she was getting, or a combination of them, but she needs most of them, and it's just hard to figure out where it's coming from. However, I think we've decided that it might have been from one of the chemos that she had. She's only had this kind once before, and she got really disoriented then, too- but that was also when she ended up in PICU, so we didn't really notice. We're just glad that it finally started to slack off midway through this week, and she's been feeling alright the past couple of days.
Even though her ANC/White blood cells/Immunity is still at zero, her doctor decided that if she is very careful, and wears a mask, she can leave her room when the hospital is most empty in the evenings. She hadn't done much, but lately she's had enough energy to sneak down to the physical therapy department in the Trauma unit, after hours, to do a little bit of a work out. We've also painted some pictures. And taken lots of naps!
We are approaching one month at the hospital (that day will be the 20th.) The good news is that Kim hasn't had any infections yet, or other major complications. We are still waiting for her blood counts to start to recover, and then she will probably get to come home for a little break. (Like last time- a week or so.)
They've decided that they want to do another regular round of chemotherapy before they start her bone marrow transplant. This basically means another round similar to this one, before The Big One.
They have found five potential bone marrow donor matches for Kim, and two cords that would serve as a back up. It's very unusual for someone like her to have so few (a friend of Kim's who is going through a bone marrow transplant as well had thousands of matches) -but we all know Kim is unusual! ;) They're still studying to choose the very best match, but we know for sure that she'll at least have something.
So there we go! It's been a while of waiting and being careful, but we're doing great so far, and things are looking good. Thank you all for being there for us!
Kim has been very, very groggy and nauseated for the past couple of weeks. We all knew it was some sort of medication she was getting, or a combination of them, but she needs most of them, and it's just hard to figure out where it's coming from. However, I think we've decided that it might have been from one of the chemos that she had. She's only had this kind once before, and she got really disoriented then, too- but that was also when she ended up in PICU, so we didn't really notice. We're just glad that it finally started to slack off midway through this week, and she's been feeling alright the past couple of days.
Even though her ANC/White blood cells/Immunity is still at zero, her doctor decided that if she is very careful, and wears a mask, she can leave her room when the hospital is most empty in the evenings. She hadn't done much, but lately she's had enough energy to sneak down to the physical therapy department in the Trauma unit, after hours, to do a little bit of a work out. We've also painted some pictures. And taken lots of naps!
We are approaching one month at the hospital (that day will be the 20th.) The good news is that Kim hasn't had any infections yet, or other major complications. We are still waiting for her blood counts to start to recover, and then she will probably get to come home for a little break. (Like last time- a week or so.)
They've decided that they want to do another regular round of chemotherapy before they start her bone marrow transplant. This basically means another round similar to this one, before The Big One.
They have found five potential bone marrow donor matches for Kim, and two cords that would serve as a back up. It's very unusual for someone like her to have so few (a friend of Kim's who is going through a bone marrow transplant as well had thousands of matches) -but we all know Kim is unusual! ;) They're still studying to choose the very best match, but we know for sure that she'll at least have something.
So there we go! It's been a while of waiting and being careful, but we're doing great so far, and things are looking good. Thank you all for being there for us!
Sunday, January 9, 2011
Wednesday, January 5, 2011
Today was the day! Kim is officially a Baldy again :) Her hair made a rapid nose dive over the past couple days and today she had mom take the shears to her head. Sad to say, those two have not been the most technologically helpful people this week, so I don't have any new pictures for you, but that's what this weekend will be for!
Aside from that, Kim has still been very sick today, and has been kept drugged up for most of the day. Because it's so important for her to keep her weight up, they're doing everything they can to keep nutrition in her body. They've started her on IV nutrients, too- TPN and Lipids. They help.
We haven't heard anything new about her bone marrow transplant. Mostly likely, they will make the decision about her donor when they get the results for the bone marrow test she'll take once her blood counts have recovered. For now, they're all still dropping, so it will most likely be a couple more weeks.
For those of you who are a little new to all of this, I am planning to get a summary of her story up, as I know I tend to jump into the middle of things every time I post. Thank you all, anyway, for the love and support. She's a trooper, but can't do it without all of you!
Aside from that, Kim has still been very sick today, and has been kept drugged up for most of the day. Because it's so important for her to keep her weight up, they're doing everything they can to keep nutrition in her body. They've started her on IV nutrients, too- TPN and Lipids. They help.
We haven't heard anything new about her bone marrow transplant. Mostly likely, they will make the decision about her donor when they get the results for the bone marrow test she'll take once her blood counts have recovered. For now, they're all still dropping, so it will most likely be a couple more weeks.
For those of you who are a little new to all of this, I am planning to get a summary of her story up, as I know I tend to jump into the middle of things every time I post. Thank you all, anyway, for the love and support. She's a trooper, but can't do it without all of you!
Monday, January 3, 2011
You know what they say about excuses- they're like feet: they all stink!
But anyway, this past week Kim has really been struggling with nausea. It hit her hard just a day or two after she finished her last dose of chemo. They are especially anxious for her to maintain her weight because of how hard the marrow transplant is on a persons body. Hopefully, it won't last much longer. It's already hard for her to eat, as her tastebuds are chemo- fried.
Yesterday Kim started to shed a bit more than usual, and today is officially the beginning of the end for her hair. We were hoping to do something crazy to it before shaving it, so hopefully we'll have something fun to show soon.
Right now we are still waiting for Kim's counts to bottom out. Her ANC/ immunity is at zero, but her blasts (cancer cells) are still dropping. If she does well, then she might get to home home for the last few days of recovery, before going back to see how much cancer is still in her bone marrow. Most likely, there will still be some, and she will do a second, similar round of chemo and recovery. If, or when, her cancer count is at zero (remission) she will start her bone marrow transplant.
Kim is okay to have visitors, if they are healthy and over 14. She doesn't always feel up for it, so please check with us first, and try to keep visits shorter than longer. I sound so strict! But she really does love distractions when she's feeling well enough to be bored :)
Special thanks to friends whose Christmas presents got to Kim this weekend! Books, a sweatshirt, DVDs, and a PillowPet were all great ideas! Also, a picture of the great posters so many of you signed will be coming up soon.
Special thanks also to Uncle Mic and Aunt Leslie for the fun game!
And of course, thanks you all as always for the love, thoughts and prayers!
But anyway, this past week Kim has really been struggling with nausea. It hit her hard just a day or two after she finished her last dose of chemo. They are especially anxious for her to maintain her weight because of how hard the marrow transplant is on a persons body. Hopefully, it won't last much longer. It's already hard for her to eat, as her tastebuds are chemo- fried.
Yesterday Kim started to shed a bit more than usual, and today is officially the beginning of the end for her hair. We were hoping to do something crazy to it before shaving it, so hopefully we'll have something fun to show soon.
Right now we are still waiting for Kim's counts to bottom out. Her ANC/ immunity is at zero, but her blasts (cancer cells) are still dropping. If she does well, then she might get to home home for the last few days of recovery, before going back to see how much cancer is still in her bone marrow. Most likely, there will still be some, and she will do a second, similar round of chemo and recovery. If, or when, her cancer count is at zero (remission) she will start her bone marrow transplant.
Kim is okay to have visitors, if they are healthy and over 14. She doesn't always feel up for it, so please check with us first, and try to keep visits shorter than longer. I sound so strict! But she really does love distractions when she's feeling well enough to be bored :)
Special thanks to friends whose Christmas presents got to Kim this weekend! Books, a sweatshirt, DVDs, and a PillowPet were all great ideas! Also, a picture of the great posters so many of you signed will be coming up soon.
Special thanks also to Uncle Mic and Aunt Leslie for the fun game!
And of course, thanks you all as always for the love, thoughts and prayers!
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