Thursday, December 31, 2009
This morning the doctors decided that she could come off of the blood pressure monitor, so the sensor that was in her wrist is now gone and her hands are totally needle free! She also was able to come off of her catheter, and she moved into a reclining chair for part of the day. Best of all, she's been doing great with her breathing, and so just about an hour ago, they took her off of her "high-flow" respirator and now have her on just a regular oxygen flow. They are going to move her feeding tube to her stomach, and keep her on that until she has more of her strengh back, but they've taken her off of the clear-liquids diet and said that she can eat whatever she feels comfortable with. They count her calories, and they will make up the difference at night through the feeding tube. Luckily, she hasn't thrown up yet today, so she seems to be doing well with it. They are also probably going to take the PICC line out of her arm in a day or so, since she has so few (comparatively) IV fluids they have to give her now.
Her fever is still down- dare I even say gone now? She's looking great- no longer puffy, though she's skinnier than ever, and her color is good. Her ANC wobbled between 0 and 100 for a day or two, they stayed at 100, and as of today is up to 200. They were worried that high white blood cells could cause her to feel really sick, if they were to start flooding the areas she had the infection, but so far it doesn't seem to be much of a problem. Hopefully this is because her infection is gone now, but it's hard for them to tell. They are still giving her most of the anti-biotics and keeping an eye on her.
As far as awareness goes, she's still very tired, and when she is awake, she's still loopy. They are still giving her pain meds, and plenty of other things that make her tired. It will probably be a while before she's off of all that- they are going to put her through a whole rehabilitation cycle to get her weaned from the narcotics, so she doesn't react badly to coming off of them. Our little druggie :)
At this point, with just the IVs, regular oxygen flow and feeding tube being the only special machine-related things she has going on, and some regular vitals monitors that she usually has upstairs anyway, they will keep her here for another day or two, and if she's still looking good, then she can go back up to the ImmunoCompromised Services unit. Yay!
Though she has been asleep most of the day, even in her reclining chair, she did wake up for a little bit to drink some broth and juice, and she talked for a while to mom, dad and me. She knows where she is, and sort of what she's been through, and she knows she's crazy right now (she sang the "I'm a nut" girls camp song for us) so she's not as bad as she has been, but she still rambled about a lot of different things. For just a little while she got emotional, and told us that she felt so sorry, and bad for us- that we'd had to go through all of this with her, and we didn't even get to be sedated like she was. She said it's better to be sedated. She remembered coming out of it, towards the end, and she said it was hard- that she just wanted them to put her back to sleep, but she knew she had to wake up and start working on getting better. But after we all cried a little bit, and told her that we love her so much and we're just so glad she's getting better, she cheered up and started telling us funny stories. Like how she was throwing up all through the movie Ice Age, and how she'll never be able to watch the show again, and in fact, she hates it so much that she'd like to tear it into little pieces, and set it on fire, and throw it off a cliff, and when the forest rangers came to yell at her for hurting the forest, she would tell them that they just don't understand! Oh, you probably had to be there, but I was laughing so hard, I thought I'd crack a rib. Not long after that she zonked out again, and is now sleeping peacefully...
Wednesday, December 30, 2009
They still have the feeding tube going down into her intestines, but they've removed the suction line that ran to her stomach (the one that she coughed up a couple of days ago.) They probably would have left it in longer, but it stopped working, so they decided to just take it out. Since then, she's thrown up a few times a day... definitely not fun, but she's allowed to be on a clear-liquid diet. As soon as her stomach starts behaving, they will probably take her off the feeding tube as well.
Because she is still coming off of the sedatives, and working other drugs through her system, she's been pretty loopy again today, and really tired. They did get her out of the bed once, for physical therapy, but for the most part she's been sleepy all day. But, it's fun to be able to talk to her, a little bit. She's partially not used to being able to talk again, and partially doesn't like to because it kind of hurts her. Her vocal cords are still recovering, and she sounds pretty froggy. When her oncology doctor, Dr. Barnette, came to visit her again today, he told her that she should switch to filtered cigarettes. ;)
So, even though it's been a really rough day for Kim, it's been a day of lots of changes, that we can hopefully keep for the better. Her fever is still down, her swelling has gone down, and her color is getting better. I'm so glad, and I can't wait to see her continue to improve. Some of you might even hear from her in the next day or two, who knows? Hopefully it won't be too much longer before we can move back up to the ICS- and use cell phones! Anyway, thank you all- and lets keep praying for Kim's recovery!
Tuesday, December 29, 2009
This is the tray that I told you about- where the fluid that drains from around Kim's lungs goes. Since I took this picture, she filled this one completely (2000 CCs) and has another column and a half on the next one filled. Over 2600 total- so that's what, over 80 ounces? Something like that. It's crazy, because it's kind of thick, like jelly.
This is my bed at the B&B. There is a queen for mom and dad, and actually a normal (borning) twin that I could sleep in, but who could resist a darling window seat bed? So I moved the blankets over. Thanks Ronald McDonald, and MYRON and LESLIE!
This is a picture dad took during our Christmas phone call with Mike. Kim was pretty much out of it, but it was so wonderful talking with him!
Our family Christmas picture- after we opened our presents. Kim was our real present that day (hence the lovely bow- don't tell her that I was the one who put it on her!)
Kim's note! I was so thrilled that she managed it. Oh, how I love that girl.
Kim's new bed, on its way in.
Monday, December 28, 2009
As I've mentioned before, she has a suction line running through her nose, down her throat and into her stomach to pump out any fluids that make their way there. Her feeding tube goes down the other side of her nose, down her throat, through her stomach and into her small intestine. So her stomach isn't really supposed to be doing much at all right now. They try to keep it drained so that she won't throw up, but sometimes when she's coughing really hard, she works up a little vomit anyway. This is always the worst, because she ends up with fluid from her lungs in her windpipe/trachea blocking the base of her breathing tube, and vomit in her throat/esophagus filling up her mouth, so I know she feels like she is drowning, and she panics a bit. The nurses have always been really good to get her suctioned out as quickly as possible, and Kim knows this. But it's still not fun while it's happening. One time she was coughing and gagging so hard, that she actually worked the suction line up from out of her stomach, and into her mouth. Her vomit is yellow, from the potassium-rich nutrition fluid they still have on a constant drip into her. So, try to imagine poor Kim starting to spasm, turning bright red, with wide panicked eyes, yellow fluid frothing out of her mouth, and then a long plastic tube working its way out as well. No, actually, don't try to imagine it. The nurse really did handle it all very quickly, and we were there with a nice rag to keep her from getting all messy. I am most grateful that her heart has been getting so much healthier. One of the chemo’s that they gave her last time really made it weak, and prone to those SVP/beat-twice-as-fast attacks. But, now that it is getting stronger, she hasn't been getting them, and that has really been wonderful. Also, I'm glad that she's still been kept on the sedatives, and so she probably won't remember that lovely experience. Though I guess we'll have to see what she remembers when she's well enough to come completely off the respirator.
Another fun thing I forgot to tell you last post was that poor Kim has started to develop bed sores. They've tried to keep her rotated, slightly propped up on one side or another for a change, and to keep her blood circulating... but alas, it was to no avail. So, today they brought in a special bed that they ordered up for her. It's like a regular hospital bed, but with an air mattress on top. And not just any air mattress- this one is made up of smaller air chambers that will inflate and deflate slightly to keep the pressure on her body changing now and then. It was pretty exciting getting her moved onto it (it involved a Lot of people, a special inflatable moving pad, and some serious furniture rearranging) but she agrees that it is more comfortable than her other bed was.
They lowered Kim's sedative level a bit today, so she was a little more conscious and active than she has been for the past week. I know it frustrates her a little, when she can work up the energy to be frustrated, to not be able to talk, but it is nice to look at her, and be able to interact with her a bit- once I get the hang of asking short and simple, yes or no questions. Most exciting though was that for just a little while today, she was strong enough to grip a marker and write a little bit on a board for us. She said that it was hard to breathe. The respiratory doctor came in just to talk to her about it, and after carefully checking her ventilator, she explained to Kim that it would feel a little harder because they had lowered some of the settings and Kim was going to be doing a little more of the work now, but if it got too hard, they could go back up on the settings. Faced with this clearly defined goal, Kim nodded to show that she would work on building her lungs up. Oh, I am so proud of her. The other thing Kim wrote was that she wanted a warm blanket. Which... brings me to my other news. Her fever went away completely for the first time today. As of late this afternoon, she was at a normal, human temperature, and stayed there until we left around 1030 pm. She has literally had a fever non-stop for the past three and a half weeks. It will probably go back up again, but that she was able to get this low, at least for a while, is great.
As you can see, it's still a really rough road for Kim, but I can't help but feel that she is on the right track. Thank you all, so much... this really is a miracle.
Saturday, December 26, 2009
As a side note, did you guys know that I've started a blog for Mike? I haven't done too much with it yet, but there should be at least a weekly update from now on as to how he is doing. The address is eldermikenelson.blogspot.com
We opened a couple of presents here in the room, but we're saving our Real Christmas for when Kim comes home. She doesn't even remember yesterday, so it doesn't matter that we didn't do too much.
I forgot to tell you in my last post a little more about Kim's infection. Because she is fighting it her whole body through, despite it being centralized in her lungs now, she's swollen and puffy all over her body. She is also slightly jaundiced (turning yellow) because of a billyruben buildup from one of her neutrition fluids vs. still having a hard time flushing it out of her body.
They think they have her more or less stabalized now. She's still very sedated, and can't move much at all, or talk. But she can sometimes nod, or shake her head to communicate, and can squeeze our hands and wiggle her feet. They are going to get her started on some basic physical therapy on Monday.
What we are really waiting for now is Kim's blood counts to start building up again. They should be coming up any time from now, to a couple more weeks from now if she is slow, and that's when her body will be able to better eutalize the antibiotics, and really start to heal itself.
I wanted to give a special thank you to all of you who have brought gifts for Kim or our family. Even though we haven't opened them yet, we told her that so many people are thinking about her, and she seems to really appreciate that.
Also, I wanted to let Kim's friends know that she felt really terrible about not getting your gifts to you before Christmas. But she has them, and when she is better and at home, she wants to give them to you.
Thursday, December 24, 2009
(Don't ask- the mood just struck me.) Here I am, again with Kim. I've missed being with her so much. Though she's been kept unconscious these past couple of days, it's very difficult to be away from her. However, today was a special day to see her again. Though her status hasn't changed much, the doctors decided they could try taking her out of the paralysis, and just keep her on the pain killers and sedatives. Fortunately, she's handled it well. She's helping the respirator a bit with her own breathing, so they've backed off a bit on the pressure (it will still be quite a while before she loses the breathing tube) but the main thing is that she is slightly more aware today. By that I mean, yesterday she was out cold, and today she blinks, moves her hands a bit and wiggles her feet. And I can tell she understands us to some extent, and can tell that dad, mom and I are here. Remember though, it's not like we are Trying to wake her up. The point is to allow her to rest and recover. She's still got a very high fever- up to 104 today. Her lungs are getting better, but slowly. That is where her infection ended up settling. She has a kind of strep there (not necessarily the same one that they found in her initial blood infection, but it was caused by it: a chain reaction sort of thing.)
They were finally able to get a feeding tube into her. We learned that Kim has a very strangely shaped stomach, apparently. Instead of being sort of horizontally positioned and folded gently in the middle, like most, hers is long and tall, with a curve towards one end. It just made feeding the tube through into her small intestine a little more difficult. Funny girl.
She's still draining lots of fluid from the space around her lungs. I am looking at the collecting tray they have, and she's all the way up to 1300 CCs now- not including a lot that is still making its way through the tube. That's over 40 ounces. They are also sucking fluid out of her lungs when she starts to work it up, and sucking junk out of her stomach (remember, her feeding tube bypasses it, so they mostly try to keep it clear to avoid her throwing up- very unpleasant with all of these tubes down her throat.) So, there are a number of clear containers stitting around her bed holding all sorts of weird Kimmy-juices. :)
At this time, I am just so glad that Kim is healing, and that she is semi-awake. The sedatives they have her on, as I've said, tend to have a pretty strong amnesia-affect, so it's not likely that she'll remember any of this. But it's nice to be able to feel her awareness of our presence. It's going to make Christmas morning a lot more fun :) I hope all of you enjoy your Christmases as well!
Wednesday, December 23, 2009
They also inserted a small draining tube into her abdomen, just outside of her lungs. She has so much fluid outside of her lungs pressing against them, that it's contributed very much to her difficulty breathing. So far, they've drained off over 300 C Cs of fluid- that's over 10 ounces. They also found that she's retaining fluid in other parts of her body, like her digestive system, so they've put off inserting the feeding tube until they can get that a little more under control.
Her blood pressure is doing better. When they give her fluids, like blood and platelets, they usually take her off blood pressure medication, but put her on when she hasn't had fluids for a while. They currently have her off of her heart medication as well, because her latest MRI showed that her heart was looking stronger. Can you tell that this whole thing is sort of a balancing act? They've been doing a great job of it so far.
Probably the biggest thing that's happened recently was just tonight. Because she has so many lines and IV's and medications (as I told you, she had additional IV's on both hands and feet to try and keep up with it all... but those only last so long, can be more painful, and can only take some of the drugs they give her. Others need to go through larger lines, like the one she has in her chest) they are giving her an additional permanent IV line, a PICC line.
Actually, they just did it an hour or so ago, so along with the double-lumen broviach line she has in her chest, she now has a triple-lumen PICC line in her upper arm. This is going to be very helpful in getting her body what it needs. For a little more info on PICC lines, go to this website:
The picture at the top of the page is a double-lumen line, to help you understand if you didn't already know what that means. What's cool about lumens is that you can add additionally branching caps to them, so as long as the medications/fluids are compatable, you can have up to something like four IV lines in each lumen. The main line feeds directly into the superior vena clava, just above her heart, as does her chest/central/broviach line. (So many different ways to say it all! But I hope you get what I mean. I will take a picture of all of it on Kim some time soon. It's getting pretty busy! I think she's up to 13 IV pumps at one time now... and who knows? Maybe more on the way.) It will be nice not to have so many IV's on her outer body- she was getting pretty bruised! And they don't usually work as well. Plus, each time they stuck her again, there has been risk of more infection. Her immunity is still at zero. But they've been so careful with everything so far, it's more a matter of comfort and convenience at this point.
Overall, Kim still has that infection that started this whole thing, and they're still working to get it taken care of- while also fixing her body up. The nurses think she looks better today than she did yesterday, so that's great news!
Did I do better this time? :) Thank you all! Love, Emily
PS- don't forget my usual disclaimer against spelling and grammar. I decided long ago that I was just going to type as it comes to my mind, and just let all of you forgive me for my little mistakes!
I feel like I need to apologize to all of you. I have been having a pretty rough time this past week- we all are, aren't we? But I've let it get me down, and though I've been totally honest in my posts, I feel like I haven't been as positive as I should, and as I have tried to be up until now. I think it was because it just seemed like I wasn't doing the situation justice if I said things like, "...but I know it will just be a matter of time before Kim gets past this as well!" or, "It's been rough, but she'll be okay!" I felt fake, being optimistic, and I was also selfish. I thought if I shared the worry unfiltered, you would all be more inclined to pray for Kim. Because really, it's gotten to the point where she really can't get much worse than she is. If she has any more complications, or she doesn't pull through the state she's in now, she's not going to make it. But those are just facts. And I now feel guilty for not showing more faith to all of you.
Although things haven't changed much for Kim, I KNOW SHE IS GOING TO PULL THROUGH THIS. I'm not just saying that because of karma, or "the secret" or even the simple healthy facts of maintaining a good attitude. Though we have as a family faced the fact that she may not survive this, we KNOW that she will. Kim had already done so much in life, and touched the lives of so many others, but I know it's only a small part of the things she will accomplish her whole life through.
It is going to be a rough road still, but I couldn't ask for a better family, or better friends to help us along the way. Thank you all, so very much.
Monday, December 21, 2009
While they have her on the respirator to get her lungs back into function, they will keep her sedated (unconscious.) They are also giving her pain medication and the drugs combine to create an amnesia-like effect, so she shouldn't be aware of or be able to remember any of this later.
Right now she has two nurses assigned to her day and night, and regular checks by the doctors. They are taking very good care of her- moving her around so her body doesn’t get stiff. They are very carefully monitoring all of her vitals and chemicals- matching how she is doing with what they will give her. It's a constant process.
Today all went well, aside from a temporary drop in her blood pressure, which they were able to get back up. The bronchoscope, probing of her lungs, went well. They are working to get them clear.
There is not much more we can do than wait and see what happens next. At this point, we know we will be spending Christmas at the hospital- probably in the PICU (Pediatric Intensive Care Unit.) At this point we're just hoping she'll be well enough to be conscious for it.
Sunday, December 20, 2009
Saturday, December 19, 2009
Kim really hasn't changed her status very much. But, I would like to think that she is getting just a little bit better. She seems to have a little more energy today, and though she still has fevers and the whole nine yards, it just seems like she might be getting a slight edge on it all. KNOCK ON WOOD!
She is still so tired and weak. I'm sorry if any of you are feeling neglected. I know in the past she's been able to keep in close touch with her friends at home. But I think it is going to be a while still before she is up for much more than just trying to get better. We're hoping she can at least get to the point where they'll send her back up to the Immuno-Compromised ward where we usually dwell. We really miss it up there- both the slightly more comfortable surroundings (it was kind of nice having all four walls solid- here, two of them are glass doors with curtains) and the wonderful staff, many of which we've gotten really close to.
It is such a huge relief to no longer be Constantly worrying that she'll stop breathing at any minute. It's still really difficult to know what will come, as they still don't have her infection pinned down, but the slight improvement does wonders for moral. Thank you all again- we couldn't have done it without you.
Friday, December 18, 2009
Still has a fever, still breathing too fast (exhausting) and she may be getting a feeding tube if she can't start eating. Not much else has changed.
Yesterday, some of the Utah Grizzly Hockey players came around the hospital. They game Kim a signed jersey. She didn't remember it happening, but at one of her more coherent moments mom told her about it, and she asked to see the picture. She agreed that they had been pretty cute.
She hasn't really been able to fall asleep tonight... just drifts in and out, but is rarely ever really awake, either.
I think I mentioned before that when the shift changes from day to night, and vs vrsa, they have us leave for that hour (between 7 and 8 am or pm.) That is probably when I will head back to the hotel and give the car to mom, so she can come up and spend the day with Kim... and hopefully I won't sleep too long, so we can all three spend some time together when I wake up.
Well, now that I've bored you with probably a few too many details (I'm pretty tired at this point, so forgive my rambling) I just wanted to say that one thing I've thought about when she's struggling between breaths (not right now- she's doing okay right now) is that I'm sort of praying over each one... and so are all of you. And for as many breaths as she needs to take, she's probably got enough prayers to cover her.
Thursday, December 17, 2009
As of today, Kim is a little more lucid, in that she doesn't talk as much as though she were awake and dreaming at the same time. She can focus more on what is going on in the room. But she's still so weak that she really doesn't say much. She still has to be on the breathing mask, too, and that makes it harder for her to talk. Fortunately she's been sleeping a lot, and though she tries to talk in her sleep sometimes, she's more relaxed.
We heard the rest of the test results this morning. As well as her lungs (which I told you were 75% fluid filled as of the scan) they tested her heart, and found that it is only pumping at 53% capacity. So, they gave her additional medicine today to help it pump and to relax her veins so that the blood moves more easily.
She still has fevers and the infection- no news there.
I just wanted to thank those of you who have been a help to us, and who have been praying for Kim. Mom has been taking this pretty hard, so if you want to get in touch with us, please leave a message on my phone, or send me an email.
For those of you who may like to participate as well, the Logan 15th ward is going to hold a special fast for Kim this Sunday. We're so grateful to them for their support.
Kim is doing worse. They put her from just oxygen flow tubes to a CPAP machine- one that fits over her mouth and nose and is more forceful about blowing oxygen into her.
The results from her scans came back, and we found out that her lungs are 3/4 filled with fluid. When I put my hand on her ribs, I can feel them crackle when she breathes. She is practically panting all of the time- has been for days now. They don't want to put her on an actual respirator unless it is absolutely necessary, because with her immunity so low, the risks almost outweigh the benefit.
They stopped giving her the medicine we thought was making her loopy last night. So what has her totally delirious now is most likely the fever and exhaustion. She hasn't been able to rest much at all since this hit her on Saturday.
Leaving her was very hard. She has been having a lot of pain in her abdomen, and it hit again just as we were about to go. I think it is from being so tense trying to breathe for so long. That's when they gave her the breathing mask.
Hopefully the mask will help her lungs. Hopefully she'll be able to rest more tonight to help herself heal. Hopefully the medicines they are giving her will start to kick in and help the infection and fever. Hopefully the blessing she received earlier helps. Hopefully she'll be okay until mom can get there again in the morning. Hopefully the rest of us can keep it together while she is going through this. Hope and prayers.
Wednesday, December 16, 2009
It's a wonder Kim even smiled for the picture of her with Ben and Irish (don't you love his tiny santa hat?) Well, it's not much of a smile, but I guess it's the best she could do. At least she recognized a camera :) She was also herself enough to throw off the cloth we've been keeping on her forehead- vanity never faileth! But of course, ten seconds after this she was once again staring in her mind's own version of "Pirates of the Carribbean"
Right now they are changing the charges in Kim's room, so we aren't allowed to be there, for about an hour. I was able to go in earlier though and spend some time with her. I guess she is technically doing okay, but it's pretty hard to see her like this. She is breathing really fast, and may still have fluid sitting on her lungs. They have her hooked up to so many machines: to monitor her breathing, oxygen level, heartrate, heart pressure (a line going into her heart- because of her murmer etc that have been issues before), potassium level, blood pressure, etc. They are giving her oxygen, potassium, saline, platelets now and then, blood pressure medication, antibiotics, antifungals, antinausea... etc.
As I said, she is breathing quickly, is very tired, sometimes has pain in her abdomen, and is very confused- to the point of being delirious. So it's hard to see her this way, especially because we still don't really know how she's doing overall. They've done CAT scans and echocardiograms on her today, to see what's going on. We should know in the morning how things are working.
Really, I should just focus on the fact that SHE IS GOING TO BE FINE. Two of our favorite nurses in the ICU came down and gave her a blessing tonight. This is so hard, but I'm sure she'll pull through soon.
I took a couple of pictures, and will try to get them posted now. Once again, as always, thank you for praying for her.
Tuesday, December 15, 2009
They are still battling the strep infection. There is a chance it could move to other parts of her body. Between that and her being so weak right now, her fevers have been getting as high as 106.
Mom is the only one who is allowed to be in with her. Also, there are no cell phones allowed in the ICU, so for now they will be a little out of touch.
I will keep you updated.
Monday, December 14, 2009
Okay, I didn't end up leaving earlier. Kim was doing very badly for a while... they ran more blood tests, did some scans, and called in doctors from Intensive Care. Her fever has been over 102- up to 105, and she was shaking, pale, she couldn't breathe, and her hands and feet were going numb. But, they got some medicine in her, and she's been getting a bit better. So they still haven't sent her to the ICU. She's been kind of stradling the line for the past couple of days, but so far has stayed just on the upside. They'll keep an eye on her for the next while, and she may go up and down some more, but hopefully she'll pull through it within a day or two.
The bacteria in her chest is a kind of strep. So far as we know, it's still there, the tests aren't back on that yet. But as long as she can keep on top of it, she'll be okay.
I doubt they'll end up doing surgery on her, and though this does weaken her, so long as she can beat the next couple of days, she probably won't be set back too much. Thank you all for the prayers. I'll update again tomorrow.
PS- Santa just came by :) We took a couple of pictures that we'll try to get up soon.
I won't lie- she's on oxygen, extra fluids, heart monitors, and a nearly constant stream of check-ups. She's really weak, and tired. But I know she'll be okay- if we just keep praying for her. Thank you all.
Sunday, December 13, 2009
Kim has contracted a blood infection through her IV lines, and has been battling a very high fever, nausea and more weakness than usual for a couple of days. So far, the antibiotics they have her on aren't making much of a difference. If she is not better by tomorrow, they will admit her to intensive care, and surgically remove her lines. Dad is with her now, and will stay an extra night and go strait to work tomorrow, because of the snow. For the same reason, Mom doesn't know when she'll be able to get back down to Kim. It's a hard time for our family.
This is obiously not just stalling Kim from getting home soon before Christmas- it's one of the toughest things she's had happen yet. So please, pray for her today.
Thank you all so much
Love, The Nelsons
Thursday, December 10, 2009
These are the decorations I made out of construction paper and paper towels. Look how short my Christmas chain is getting! Time to get out of here! ;) My ANC is officially at 0 now. Good. Now it can go back up and I can go home in time for Christmas! WOOHOO! I was tested for c-diff (gross icky bacterial infection in the intestines) but the two test results came back negative. But they don't believe it and are thinking about testing me AGAIN and keeping me on the antibiotics anyway. WHAT?! Crazy doctors!
Oh good, my nurse just told me I didn't have to take the antibiotics anymore. Happy day! :)
I'm growing my eyebrows and eyelashes back. Yay!! I wonder when they're going to start falling out. But I'll enjoy it while it lasts :)
My taste buds are still all weird from the chemo. I ate a peanut butter and jelly sandwich for breakfast and it was like eating a sponge. Very weird. Speaking of food, last night mom and I got take out from Sizzlers. It was tasty! But the lady who took the order really messed up mine. I asked for lemon herb chicken and fries. I got the chicken, shrimp and rice. The rice was good though and I gave mom the shrimp. :)
So not much is happening, which is good. Just trying to find ways to pass the time. I did start reading "Chalice" by Robin McKinley yesterday and finished it.
Thanks again for all your love and support :) You're all so awesome!
Sunday, December 6, 2009
It's day seven of being back in good ol' PCMC in room number 4415. I have a purple floor! I have my room all decked out for Christmas. I just finished with my last dose of chemo this morning! Now I play the waiting game. Fingers crossed for no complications! My ANC is still high enough that I can go out for walks, now that everyone here isn't so paranoid about H1N1. So I get out as much as I can without worrying too many people. One tech almost called security because she thought I wasn't coming back. Opps. It's been pretty nice. As long as I'm drinking enough, they'll keep me unhooked from my pole. SWEET! Me and my pole do not always see eye to eye.
Oh my ANC got as high as 2600! That's in the normal range! WOOHOOO! Go bone marrow go! Crank out that blood! YAY YA!!
My fingers are crossed that I'll be home for Christmas. And my toes and my arms and my legs and my eyes and whatever else I can cross :P. They are very understanding here when it comes to the holiday season. I bet I can be home in time. As long as I don't start getting fevers, infections and fun things like that. Knock on wood.
I've found out that I'm really blessed. A tech told me most kids they send home end up coming back in a few days with a fever or something. I've been able to enjoy over two weeks of freedom each time I've been home. I only have to go back when the doctors say it's time for more chemo. The tech said that's rare. :O WOW! I had no idea. More tender mercies from the Lord. He's really watching out for me. I just wrote Mike a letter. I told him how this trial is not a time to despair, but to rejoice. I get to learn and grow so much from what I'm going through. That's a blessing. I feel such love from my Heavenly Parents and my Savior that my heart just wants to sing! I am shown incredible love from family, friends, and even people I've never met and probably never will. Love is amazing.
Sunday, November 29, 2009
Right now mom and Kim are packing. They're taking down some nice Christmas decorations to put up in her room.
I know it's hard to be away from home for Kim, and this time of year it's especially rough. If I could ask all of you for a favor, it would just be to keep her in your thoughts and prayers as always, and any emails, texts, cards or presents for her would be really great. Hearing from you is the best way to keep her distracted and encouraged.
Thank you all, so much again- I hope you have a great holiday season!
Saturday we went to Wyoming to visit Mom's family for our annual Thanksgiving get-together. It was a really special day, because almost all of the family was able to come. We were only missing Jeff, Val, and Alissa (and they came up the night before- but had to work on saturday- their other kids were there,) Mike, who is on his mission, and Scott. Vii, Annette and their two kids Jackson and India came over from Georgia, and everyone else made it as well. It's always so much fun to spend time with our family.
This year, grandma made ALL of us hats and scarves. With seven children, their spouses, and 21 grandchildren... that's 35 sets! She's been working on them since this summer, and I have to say, they were a huge success! She is so amazing- a great example to all of her family.
Everyone was so glad that Kim was able to be there. They all care so much about her, and I know we owe much of her success to them. Thank you all, so much!
Friday, November 27, 2009
We put our Christmas decorations up a little earlier than usual this year- last weekend. Kim wanted a chance to help put them up, and enjoy them before she goes back to the hospital for round 4 (Monday.) After decorating the tree, (when I told Kim that her head matches the bulbs now!) we snuggled together for a movie. We're so lucky to have a great home and family. I hope all of you enjoy the holidays this year!
Thanksgiving was a really wonderful day for us this year. Because Kim's counts have gotten so high, she was able to go to our dad's family's Thanksgiving at our Aunt Diana and Uncle Larry's house in Deweyville. We had a great time with family, and got to spend a while giving attention to their two horses- Gaston and Jemima.
We are thankful that Kim's treatments are going so well, that she was able to be home with us for Thanksgiving, that she's feeling so great, that we have such wonderful friends and family who support us, and for all of the many other blessings that we have in our lives. Thank you all for being a part of it. Happy Thanksgiving!
Monday, November 23, 2009
My diagnoses of leukemia came as a complete shock. I came to Primary Children's for a heart surgery. I have SVT (supraventricle tachycardia) and a hole in my heart I was going to have fixed. Both I could live with, but because I want to remain an active person, it was a better option to get the operations.
The day before, I came down with a high fever. When I arrived at the hospital, one of my doctors was worried I was coming down with the flu and postponed my surgery. While I had been waiting for his decision, I told a nurse how the past few months I was getting bruises really easy and how when I'd do something as simple as walking up a flight of stairs, I'd get a throbbing headache. I thought that was because of my heart, but my doctor said he'd never heard of that. After a blood test, I was sent up to the oncology clinic where they told me I had leukemia. A few days later they found out I had AML, the more aggressive type of leukemia. I learned my treatment would also be more aggressive, I'd have to remain in the hospital for a month, only to go home for a little amount of time before going back for another month.
This was the last thing I thought I'd be doing right after I graduated from high school. I had to put off going to college, quit my job and leave my home. I've tried to be as positive as I could, I know things could be much worse than they are now. One thing I was sad about was that I wouldn't be able to go to church for a long time.
But I received an awesome surprise. Two men brought the sacrament to me one Sunday. I was able to participate in that ordinance, something I didn't think I was going to be able to do for a long time. What a service these men are willing to do for me. Even though I am stuck in the hospital, I can still partake of the sacrament and be forgiven of my sins. I was filled with joy. Soon after I started receiving lessons on Sunday from two sisters as well. It brings the spirit into my room. It feels so wonderful. The things I learn I try to apply to my life.
The members who come touch my life, they're such good examples to me. So loving and kind. They're willing to sacrifice their time for people like me. Though it may seem like a little thing to them to give one girl a lesson or the sacrament, it's really big and important to me. It makes my stay at the hospital that much easier.
I know, with all my heart, that this is the true church. I will not and can not deny that. The Gospel brings so many blessings to my family and I. Even in this horrible situation I can still be so happy, so full of joy. I know I'm not alone. There is someone who knows exactly what I'm going through, someone I can always talk to anytime, who loves me so much, who knows I can do this. My Savior, Jesus Christ. As it says in John 14:18, "I will not leave you comfortless, I will come to you." I'm not alone, what a comfort to be able to know this! I can do this, even though it gets harder and harder. I can do it. And I'll do it joyfully. I'll press forward, through thick and thin. This trial was given to me to test my weaknesses, to make me stronger. The Lord will help me, I'm not alone, His spirit is with me. I feel at peace. I'm am so grateful for this Gospel, I can't imagine facing any trial without it.
Thursday, November 19, 2009
Hello, my name is Kimberly Nelson. But I think Kimberly is too long, so I just like Kim. Plus, don't you dare call me Kimberly with that "you've got mail" accent, or I will but you in the stomach with my head. So there you go.
Kim has been reading a lot of Junie B. Jones books. They suit her increasinly short attention span well. If you don't know what those are, I would highly recommend reading them- great fun for all ages. Unfortunately, they do tend to make you talk a little weird for a few days after you've read one of them- just so you know.
We heard back from the hospital today as to Kim's latest blood counts- good news! She's all the way up to 600 on her ANC. This means she's out of the danger zone, and gets to cut back on her anti-biotics. She's feeling pretty good. She has a check-up appointment tomorrow, and will go in Monday to have her bone marrow tested. She gets to be home for the family Thanksgiving dinners, and then the doctors have her tentatively scheduled to go back to the hospital on December 1st for round 4. We're really hoping that she'll get through her chemo and recovery quickly this next time, and be home for as much of the Christmas season as possible!
Kim had a rough time in round three, but she's bounced back amazingly well. Once again, we know this is largely in part because of her strong spirit, and the love and prayers of all of you. Thank you, as always.
Tuesday, November 17, 2009
She's in great spirits- amazing, after everything she's been going through! I'll have to get an updated picture of her up here so you can see how she's doing.
She'll have a doctor's appointment some time this week at PCMC, and will probably go down next week for her bone marrow test, and then will probably be back at the hospital the week after Thanksgiving- but of course, it could be the week after that if she's not doing well, or even earlier than that if she's Really not doing well! (They want her to recover enough to start round 4 of chemo- so they'll leave her here longer if she's slow to recover. Of course, if she ends up getting sick or something, she'll have to go back...)
We're excited for Thanksgiving, and hoping she'll be able to stay here with us. We'll probably be putting up our Christmas decorations this weekend as well- because Kim loves getting to help with that, and who knows how long she'll get to enjoy it here this year?
Thanks everyone~ we love you!
Thursday, November 12, 2009
Dad went down this last weekend to stay with Kim, and a couple of friends have been to see her, but when she's not feeling very sick and tired (which is most of the time) she's pretty bored out of her mind! This is getting to be a pretty hard part in her treatment. Things are going well on the large scale, but it's still a long road to get there, and this round has turned out to be the roughest one yet.
Her counts are being slow to come up, which isn't good for her hopes of coming home- as it is flu season and the doctors aren't likely to let her out until they are nice and high. She's still getting transfusions now and then, and has had some nausea off and on even as late as now. It seems like little problems keep cropping up- infections, nausea, rashes, etc- but the biggest problem this time have been hemeroids that have been hurting her.
Despite all of this, Kim is still amazingly enthusiastic, and is doing her best to cope with it all. Thank you all who have been staying in touch- helping to keep her distracted! Hopefully she won't have to stay too much longer before she gets a break at home, but we'll keep you posted until then.
Sunday, November 1, 2009
I hope all of you had a great Halloween!
Kim the Vampiress
Saturday, October 31, 2009
These are the names and number of laps from everyone who came out to the fun run (Our Superstars!) Just so you know, the Logan High track has four laps for every mile.
Cameron Reeve- 34
Desirae Eastmond- 18
Heather Hicken- 13
Thomas Hicken, Melody, Tobias & Felicity- 4/2/2&5
David Phippen- 20
Scott W. Hale- 22
Skyler Higley- 7
Rossy Singh- 8
Kara Skalka- 8
Susana Arredando- 6
Sara Painter- 23
Melissa Fowler- 24
Whitney Bowman- 15
Cassie Johnson- 8
Dianna Maughan- 4
Kodey Meyers- 10
Luke, Deb, Eliza and Hannah Andrew- 2
Kris Albretsen- 4
Bethany Olson- 12
Tiffany Samuelsen- 8
Emily Davis- 9
McKenzie Davis- 8
Haylie Meritt- 17
Kim Cluff- 7
Marcus Cluff- 2
Toby Cluff- 6
Randy Cluff- 4
Jeff Tanner- 6
Parker, Hunter & Kaiden Tanner- 8/2/1
Alissa Tanner- 8
Jessica Black- 24
Megan Davis- 20
The Kent Family
Jordan Archuleta- 8
Emily Nelson- no clue how many laps I ended up with... I was all over the place!
Denece Miller- 7
Dauneen Lemerich- 7
Joshua, Phoebe, Mary, Sabrina, Daniel & Jule Albretsen- 4/6/1/1/2/10
Wendy Nye- 8
Henry Olson- 14
Russ Olson- 14
Todd & Carol McDonald
Katie McGough- 1
Scott Winslow- 1
Becca Gee- oo
Pamela Gee- 6
Grandma Mary- <3
SPECIAL RECOGNITION TO:
Cameron Reeve for Most Laps
The Tanners for Furthest Distance Traveled
The Albretsens for Largest Group
Heather Hicken for Organizing the Fun Run
Kim Nelson for Her Amazing Strength in Battling Cancer
Everyone who came to the Fun Run to Support Kim
Every One of YOU who was there in Heart because you care about Kim
THANK YOU ALL!
Thursday, October 29, 2009
Wednesday, October 28, 2009
I just want to do a quick thank-you now to all of you who came out to Kim's Laps of Love fun run! It was so amazing to see you there... I can't tell you how much it means to us! I am going to do a special post for you as soon as I get the roster back from Heather, who is so wonderful for coordinating everything! (That way I can post your laps- we had some pretty impressive numbers!)
Kim is through with her chemo treatments for this hospital stay, but as you know if you've been reading the blog, this means that a lot of the side effects don't start to hit until now. She's been having trouble with a rash again, slightly different than the first one. They have her on benadryl a lot, so she's usually tired. Aside from that, things are looking okay. (Everything looks okay now that we know it seems to be working!)
I know she's feeling a little down about being stuck in the hospital for Halloween, but I'm planning to spend this weekend with her, so hopefully we'll have a fun little party of our own. And, I was thinking- if anyone wants to do a little, reverse-and-technology-based-trick-or-treating we could bombard her with fun texts and emails that day. You know, "Trick-or-Treat! I love you, Kim!" or maybe, "Trick-or-Treat! Why wouldn't the skeleton cross the road? Because he didn't have any guts! LOL" ... You get the idea (as the semester progresses, I start to lose my mind earlier and earlier in the night- sorry!)
Anyway, look forward to more coming soon. Thank you, everyone!
Wednesday, October 21, 2009
As for the Big News... We got the results from Monday's Bone Marrow Test. The doctors could find NO DETECTABLE LEUKEMIA CELLS in her marrow at all! That gives her a through and through zero percent cancer rate, and an OFFICIAL REMISSION!!! Now, she still has to have a few more months/rounds of chemo treatment, or the leukemia would be very likely to come back, but this is exactly where she needed to be at this point in her treatment. I know things have been going so well for her because of her amazing spirit, and the thoughts and prayers from all of you. Thank you so much! Let's keep it up and get her through the rest of this!
This round, Kim is going to have just five days of treatment, in more intense doses than she used to get. So, it's going to be a rough first week, but knowing that it's all Working is really going to help! Her official visitation rules look like they are going to be stricter than they used to be, but not impossible. They're asking that no more than two people be in the room with her at a time, and visits be kept short. And of course, the usual- wash hands, no flowers or laytex balloons etc, and no sick visitors. But of course, emails, letters, texts and anything else to drive away the boredom and keep her spirits up are more than welcome! Thanks everyone!
Monday, October 19, 2009
LAPS OF LOVE
Come Support Kim Nelson: 2009 Logan High Graduate and Track Runner Battling Leukemia!
SATURDAY, OCTOBER 24th, 2009 10:00 AM
LOGAN HIGH TRACK
Bring your family and friends and see how many laps you can walk/run to show your love and support to Kim and her family!
"Keep Running Kim" wristbands $3
Suggested Donation: $5 per person or $20 per family
Wome's Running Club of Cache Valley
Saturday, October 17, 2009
Last night she had an early Halloween party with some friends, as she'll be stuck in the hospital on the real day. It was great helping her get all dressed up for it... you're going to love the costume she went with!
Today we had a "hat lunch" at Olive Garden (they gave us a more secluded side room so that Kim didn't have to worry about taking her mask off.)
Throw in some shopping, lots of visits from friends, late night movie watching with me, motorcycle rides (I tell you, the woman is insane!) and you can see what I mean. If I weren't going to miss her SO much, I'd be wishing her back in the hospital just as much as she's wishing she could stay home forever. But I'm so glad she's been able to have a fun time. This business really doesn't get any easier.
With just a couple more days at home, I just want to mention now that the doctors may be limiting her "visitation rights" this time, due to the increasing threat of swine flu. They may only be allowing our parents to be with her, or at the very least, no children under 14. We'll let you know for sure. I just wanted to let you know that these last couple of days might be your last to see her before she's officially quarantined again. :D And now, of course I have to throw in another over-protective big sister comment about please not getting her sick- her immune system is Still technically in the "danger zone".
Her next room decor theme is going to be Halloween- so if any of you have some cute decorations (preferably that can withstand some bleach) that you'd like to give her, I know she would like that.
More coming soon about an AWESOME Fun Run that my cousin has arranged for Kim- Next Saturday!!! Everyone in the area, Please Come!
Wednesday, October 14, 2009
We found out that she'll be going for her next bone marrow test on Monday- to see how she did in Round Two. The doctors say she should, ideally, have zero leukemia cells in her marrow at this point. So- let's pray that's where she's at!
Even though we don't have those results yet, the doctors want her back for Round Three on Wednesday, the 21st. So she has about one more week at home. Her counts have gotten higher, but she still can't go anywhere near even the smallest of sniffles. (Big Sister Protection Mode: Stay Back you Germ-Infested Villains!)
We'll let you know how things go! Thanks everyone for your love, as always~
Tuesday, October 6, 2009
Friday, October 2, 2009
Wednesday, September 30, 2009
Sunday, September 27, 2009
Though the C-Diff (see last post) stomach bug that Kim has officially takes two weeks to treat (that's how I know she will be in the hospital for at least that long) her stomach doesn't hurt nearly so much. She had extremely painful cramps that even morphine wouldn't clear up for her. All they could really do is give her things that made her sleepy, so she wouldn't have to be awake for it.
Also, this weekend she started to get a slightly runny nose, and the doctors have been worried she might have somehow picked up a virus. But, she tested negative for that, thank goodness! Maybe she's just developing an alergy for hospitals ;)
Overall, I think she is through the worst of the chemo effects now, and will hopefully only feel better over the next couple of weeks until she is able to come home again for a while. (Lets hope that the marrow test she'll have before she goes back for round three shows her cancer percent to be at zero through and through!)
Thursday, September 24, 2009
Crazy, huh? Anyway, Kim is especially vulnerable right now, and really isn't feeling very well, but we're hoping that won't last long. She should be able to come home in about two more weeks. Until then, she's really glad to hear from you (you can still send emails through the PCMS link- look to the info on right of screen) and if she's feeling well, would love company. Please check with her/us first to be sure that she's up for it that day. Thanks everyone!