After a long day at the hospital she is finally at home. She needed platelets before she left so they were planning on her leaving around 1. But with the IV antibiotics she needs they ran into a snag - apparently the infusion room at the Corvallis hospital doesn't know how to use the central line in her neck and they didn't want anything to do with it. Unbelievable to me that the hospital could use something that another section of the hospital doesn't know how to use! And this isn't the infusion room at Dr. Lee's - its actually AT the hospital. I guess they don't usually let people go home with them in, so the only people who use the lines are the nurses on the floors. But anyway, Dr. Lee was so up in arms over it she threatened to come in to the infusion room and dose it herself every day. The funny thing to me is that they told Mom if she was comfortable with it, she could actually use the line herself and wouldn't have to come in to get the dose every day...so it can't be that hard to use. The infusion room finally agreed to do it and she's scheduled to go at 9:30 tomorrow for the first dose. And they decided she only has to do it until the 7th instead of the 10th.

They got home about 5:45pm tonight and she wanted pork chops and mashed potatoes for dinner...we'll see how that went. :)

Getting out soon, we think!

The doctors say all the cultures and bloodwork are coming back clear, no signs of infection which is great news. Her WBC is only at .5 right now and her platelets go up when she gets a unit and then head back down - but she is doing much better. They are talking about letting her go home tomorrow to finish recuperating there. She'll have to go back to the hospital every day for 10 days to continue receiving antibiotics in IV form. Her spirits are pretty low right now and they think it may be better for her to go home and be out of the hospital. So we'll see how it goes, they are checking on her insurance to make sure they'll pay for the antibiotics if she isn't admitted...
Kam and I went over tonight to see her and she looks a ton better but the central line in her neck is really bugging her and keeps bleeding so they are keeping an eye on that. She had dinner there but it didn't look like she ate much of it. Her brother Dave called while we were there and that sure perked her up, he'll be here on Saturday morning with his daughter Kari. They'll be here until the 9th and she is looking forward to their visit.

Well, she is making it through this setback. Slowly but surely she is starting to feel a little bit better. Had a little trouble with her central line bleeding during the night but they did finally get it to stop. She had some yogurt in the afternoon which was the first real food she's eaten all week. The doctors think maybe Tuesday her blood counts will be high enough for her to leave the hospital but we'll have to just wait and see. She is really getting tired of being in the hospital - kinda cranky about it so I hope she can get out soon.
The girls and I went over and cleaned the house today so I should only have to run over there on Thursday or Friday to finish getting ready for Dave and Kari to come on Saturday.

Yesterday

Mom had the port removed around 2 yesterday afternoon. Everything with that went fine and she was feeling better, still with a fever but it was lower than it has been. She has an IV in her left arm but they needed to get another going in her other arm and her veins are all collapsed and weak and they stuck her a bunch of times. They finally decided that she needed a central line in her neck so she ended up back in surgery to have that put in. I guess it can stay in for up to 2 weeks and then will need to be removed, she didn't know if they would take it out before she leaves the hospital but I assume that they will. It is apparently a really easy procedure, said she was back in her room in about 15 minutes. She is really, really tired, all of this was pretty hard on her.
We still don't know when she'll be getting out of the hospital. We have to wait on the fever to go away and her blood counts to come back up, they are still really low.

The port is coming out

Well, they now think that the port is what is causing the infections each time. They aren't sure why but all things seem to point at it, so they are taking it out about noon tomorrow. She doesn't really need it now anyway, she has an IV in her arm. She still has the fever and she has to go under to have the port removed, so I'm a bit nervous about that. Dr. Lee seems confident that this will help and she will soon be on the road to getting out of the hospital.

Yesterday was about the same for Mom. She is still fighting the fever, up and down with the meds...I did talk to her a couple of times and she was mostly able to keep up with the conversations but I don't know if she'll remember them today. Dr. Lee said that she has the same infection as before and they don't know how or where she keeps getting it. Could be literally from anything.
So, we're just waiting for the medicine to fight off the infection for her and get that temp to stay down.

A little more info...

I went to see Mom this afternoon. Her fever is hovering around 103. She is on oxygen and some very strong antibiotics. She always has trouble with leg cramps when her counts are low, which is due to a lack of potassium. They have her taking a bunch of pills daily but with her going to the hospital in the middle of the night it looks like they got missed today and she is having a lot of pain in her legs. They have those leg stimulator things on her again but I can't really say they help much. I hope they got her on IV potassium after I left tonight.
She wants to go home so bad. Keeps saying she didn't ask for this...trying to tell us she'd be home tomorrow. I think we're all getting tired of seeing the inside of those hospital walls so I can't begin to understand what she thinks when she's in there.
They took a blood culture this morning but we won't have results back until tomorrow afternoon so we don't know what we're fighting for sure yet. Dad said they told him they would do another culture on Thursday to see if the antibiotics are doing their job.
That's about all I know for now...will check on her in the morning again.

In the hospital again

Well, we were so hopeful that she would make it through this time without having an infection but she ended up in the hospital early this morning. Dad said he took her in about 2am and had to leave about 5 to go home and go to work. He is trying to get caught up at work so he can leave again and head back to the hospital. I guess her temp was up around 104, not sure how she is doing or anything right now. Will find out more later this afternoon.

It's Friday already! Mom is doing really well! Kam took her to get blood work on Monday and Wednesday...Wednesday afternoon she got platelets. She has been feeling really good this week. Last night Rachel spent the night with them so she'd have someone at home in case she started feeling bad...this morning Kam and Rachel took her for blood work again. She just got some platelets and will be admitted at noon for 2 units of blood. She should be out by 8pm or so tonight and back home. Jessika is spending the night tonight so she has someone with her tomorrow while Dad is at work. When she gets a fever she gets really sick, really fast and we need someone there to watch her and call to get her to the hospital, she really can't do it on her own...

But we are certainly hopeful that she will get through this treatment without an infection and start feeling better again by the end of next week.

We got some really exciting news yesterday. Her brother Dave and his daughter Kari are coming for a visit! They'll be here from the 4th to 9th of September. For both Mom's and his birthdays! The last time Dave was here was for my wedding in 1994 and I think the last time we saw them was in 2001... (Mom and Dad may have been back there once since then but I can't remember for sure) so we are really excited!

Home again!

She broke free this morning sometime. When I called they were waiting on the IV nurse to come take it out and then they could leave, everything was done. I think they probably left about 10 or so. Kam is taking her over to get her WBC shot and have blood drawn in the morning...then we're on the downhill slide for the next week or so. We're just really praying that she makes it through this time without any set backs.
She is feeling pretty good right now, says she's better this time that she felt at this point in treatment last time. So maybe she won't have such a hard downhill battle this time.

The week's half over...

Well we are so close now! She is doing really well so far. The kids and I went over to see her Tuesday evening and had a nice visit. Then Wednesday they moved her to her own room (2405) so at least she has some privacy now...Today she said she is really tired but otherwise feeling ok...having a little nausea but it's been worse. So we've got 2 1/2 more days in the hospital and then home again to recuperate.

Back at it again!

So Mom is all checked in to the hospital again. This time in room 2417, with a roommate. We'll hope they move her before the week is over. She's just kind of resigned to being there...but really looking forward to making this the last time.
The kids and I are going over to see her tomorrow after work. She should still be feeling good, it's usually the 3rd day that the chemo starts kicking in.

Mom and Dad said they had a great time camping this weekend. I'm really glad they took the weekend and got out of town. I'm hoping they might get another weekend in before the end of the summer, but we'll see.

So much for making plans...

Dr. Lee called and asked Mom to come in for a blood test today to see where she's at and when they should schedule the next chemo treatment. She said that Dr. Fleming is really pushing for sooner not later and they were kind of at a stand off over when to get started again.

So Mom went in and had blood drawn and Dr. Lee said that if her platelets were at least 50 they could go ahead with chemo next week but was thinking they would be in the 30-40 range and she would need to have blood drawn again on Thursday.

About 6:00 tonight she called Mom back and said the platelets are just over 80! That's up from 29 on Tuesday last week. So Mom has this weekend of freedom, which they are taking advantage of by going camping with Dick and Marjean, and then it's back to the hospital on Monday. It's hard to believe that we are already looking at this last(we pray) treatment.

Someone said a couple weeks ago that they prayed for a sense of normalcy for us...it's amazing at what becomes "normal". I'm having a hard time with thinking ahead, of what could be "normal" for us soon. All I can see is the fight that we've been in...and I don't want to get ahead of this process. I don't know if I'll ever be able to be rid of that sense of fear and move on from this.

Another check up in Portland

Tuesday was time again to go up to Portland to meet with the doctor there. He was very pleased with her progress. Her blood counts are steadily moving up even though her platelets are still pretty low at about 29. I asked what he said about the infections and he just kind of shrugged his shoulders and said some people end up in the hospital every time and some don't ever get an infection. So he wasn't concerned about it. He said that Mom could go back in for the last chemo anytime in August but I think we are sticking with sometime around the 15th of August. We'll see what Dr. Lee says after getting this doctor's assessment back.
Her next appointment in Portland is September 28th. This is when they'll do the bone marrow biopsy and we'll know if she's done with treatment. That is assuming that all goes well between now and then. So, we can see the finish line just have a few more hurdles to jump first.

Mom is really feeling much better. She took the kids to town yesterday for lunch and to do a little shopping. After they came back out to our house and did a little swimming...she was still here when I got home from work. They all had a really good time.

On the way up!

Yesterday Mom headed back over for blood tests at Dr. Lee's office. She is doing really well now. Her WBC was over 3.0. Her platelets are still low at 21 but are at least on their way up.
This morning Mom and Dad ran some errands, had breakfast out and even went to the farmers' market. They bought fresh fruit and veggies...then this afternoon we went over there and had bbq burgers and potato salad and fresh green salad. She said it was yummy! Dad said she finished her whole plate at breakfast and he thought it was just because she was so excited to eat something besides his cooking or packaged food. :)

She goes back to Portland on Tuesday for a check up and then shouldn't have to go back to the doctor until the 13th of August provided everything goes smoothly between now and then. It's looking like the 15th of August or so for the last round of chemo.

We giggled over her hair today - she's got just a little bit of white, white stubble now. Not sure if its going to stay or fall out again...she was just getting enough eyelashes back to actually see them again but she said they are starting to fall out now. She said there were 2 women in the infusion room yesterday that are on their last rounds of chemo (for different types of cancer) and they both had at least an inch or so of hair...Mom is just hoping she has enough for family pictures this fall but I said it didn't matter, hats are cute!

She's home again!

I keep forgetting to update this for some reason...she got home Tuesday afternoon. She said Dr. Lee was so excited for her to go home, told the nurses to hurry up and get the paperwork done so Mom could leave. :)
Her WBC was at .9 on Tuesday so she is still on a restricted diet and not going out in public yet, but at least we are on the way back up!
She was feeling pretty good last night, had done a little cleaning in the kitchen, but is still really tired and can only be up and about for 10-15 minutes at a time...but this is the cycle we go through each time.

Thank you to those who have sent books for her to read, she should be good for a little while now. :)

I took Kasey and Rachel over to see Mom this afternoon...Kasey brought "Guess Who" with him so they played that while she ate lunch. She is doing really good! One of the infections doctors stopped in while we were there and said that her infection is gone and they are just waiting on her WBC to come up. It had marginally improved but is still basically at 0.00 He is thinking that Dr. Lee will probably want to give her some sort of shot that boosts bone marrow production to try to give her body a little help in getting those counts up. She is on a liquid diet and doing pretty well in keeping things down now. We're just in a holding pattern for now, until she can get to producing those white cells again...

She's had a few visitors over the last few days and has really enjoyed that. Makes the days go by a little faster for her...she says she's really tired of talk shows and re-runs. :) If anyone has some new movies I bet she'd enjoy borrowing those too...

Just saw this article on Yahoo and thought I'd share it...oh how I wish that no one would have to go through this!
http://news.yahoo.com/s/ap/20100718/ap_en_ot/us_broadway_child_actor_leukemia

Today

Well, the fever did not stay gone and she is pretty darn worn out but she is still hanging in there. She sounded a little "down" today, more so than yesterday, but I take that as a good sign - at least she cares she's in there now, before she was so sick she didn't care where she was. The doctors say the infection is gone and she won't have to have any other blood cultures. She's still on antibiotics and was receiving a bag of platelets when I talked to her tonight. I think that makes 5 bags of red blood and 3 platelets now.
She's still hoping she'll be out of there before the weekend is over; I think it'll be closer to Monday or Tuesday but we'll see.

The latest...

I talked with Mom last night after work and she was doing a little better. Her fever had come back strong yesterday afternoon but then it seemed to break and was down to 97.9 around 5pm. They have taken her off one of the antibiotics as they don't think she needs both, her blood culture from the day before seems to have come back clear and they think the infection is about gone. Her WBC is still at 0.00 so she won't be getting out of the hospital any time too soon but I think we are again on the way up.

She is in need of some different books to read so if anyone has a few they'd be willing to share please either call me or drop some off at my house or their house. :)

Thanks for the support and prayers, we love you!

Today's update

Well lets see what I know now...
Mom said she took her temp on Sunday night before bed and it was about 99.4 but she went to bed and slept all night. When she woke up in the morning she had the chills and a temp of 101something. They were over to the hospital a little after 6 and in ICU by 9. She said she didn't know where she was yesterday until they told her today.

Dad went to see her this morning and she was still in ICU. He didn't know a whole lot more than yesterday but she DOES have an infection and is on oxygen.
I called at 11:00 and she had been moved from ICU to another floor but I wasn't able to talk to the nurses as they were just getting her settled into her room and were busy. I was able to get off work at 4 and headed over to the hospital. I called on my way to get a room number and found out she had been moved again. Back to "our" wing in 2SW where she usually stays while in the hospital. She is a bit more stable now than yesterday. She was asleep when I got there but was able to sit and stay awake for the 45 minutes I was there.

I walked out about 5:15 and was talking with the nurse when Dad walked by me and headed to her room...So the nurses tell us that she has an infection and they think it is the same type she had last time and they are fighting it with the same meds. Her fever is still running pretty rampant, was up to 104.8 during the day today and is still up around 102.5 late this afternoon. She has received 4 units of blood and 1 unit of platelets. The nurse was waiting for a call back from Dr. Lee to see if they should give her another platelet tonight or wait until tomorrow morning. They did an EKG today but looks like it came back normal so that is good.
Her arm looks like hell. With the lack of platelets she bruises easily and they bruised the living crap out of her arm...it is about the worst bruise I've ever seen. I took a picture on my cell phone of it, it's really bad! I guess Dr. Lee got very upset about it and yelled at the nurses in ICU, good for her!
She'll be in the hospital probably for at least a week. They can't let her out until her fever is gone for at least 24 hours without meds, and they won't let her out until her WBC and neutrophils are up to safe levels again.
She is on oxygen and is having a hard time breathing and is on liquid potassium, saline and antibiotics. But all in all, I think she is doing ok. She seemed ok and I feel better having been able to go see her today.

Keep praying for her!