Better news today

They finally figured out what kind of infection she has...it is a rare bacterial infection that I think was called "stephanomonas" and they had to have an infection specialist come in and verify their findings...Dr. Lee wasn't sure of the correct dosage for antibiotics and had to wait to have that verified as well.
So finally about 3 this afternoon they decided Mom could leave the hospital. Joyce and I were there so we helped her get her stuff together and by 4:30 we were out of there. Really she is feeling pretty well and was so thankful she could go home.
Kasey and Jessika had games tonight so I left Mom and Joyce back at home, dropped off her prescriptions and went to the games. Afterward we headed back to Mom and Dad's and brought some crockpot stew with us and got to enjoy a final meal with Joyce who is headed home tomorrow after a week here...Mom was pretty disappointed that she had to spend 3 days in the hospital while Joyce was here, but nothing we could do about it. I tried to keep her as occupied as I could. :)
Anyway, we are taking her up to the airport tomorrow then back to see Dr. Lee on Friday for a check up and to set up a time for the port to be "installed". Looks like this infection is only going to set us back about 2 weeks which all in all isn't so bad.

Sunday again

Well another week has begun. Each day brings new and different joys and pains and unexpectedness. I've learned alot in the past few months. I've have had many lessons reaffirmed the least of which is to never be surprised by the generosity of others. Last night's fundraiser was successful beyond my imagination. We had over 100 people come to support my parents. Each was generous and kind and thoughtful in so many ways. I was perhaps most stunned to see the young man whom Wayne and Debbie helped with a previous benefit. He does not know my parents; he came only to pay it forward. He and his parents are special, special people. It was overwhelming the love in that room last night. And not only did we raise alot of money, we had fun and joy and laughter when lately those have been few and far between. It is a night I will never forget.

I know that my mom and dad do not have the words to express their gratitude and appreciation and love for each person who took the time to be there.

Mom is hanging in there. They were not able to give us any more information today. The blood tests are not completed, we're hoping for tomorrow morning. So Mom is stuck in the hospital for at least one more night. Another lesson I've learned is to just (in the words of Paul McCartney) Let it Be, so we'll see what tomorrow brings, tomorrow.

Good night all and God Bless You!

Infection

Well unfortunately I don't have good news to report. Mom has an infection in her PICC line. For those that don't know, it is an intravenous line that runs from your inner arm to your heart through a vein. They use this to both draw blood samples and deliver chemo, blood and other IV products so they don't have to "stick" her every time. This has been a concern of ours since the minute she left OHSU. We have no way of knowing how the infection started but the end result is that the line was removed this morning. Joyce, Dad, Rheanna and I were all there when Dr. Lee came in to talk about what was going on...basically all treatment is on hold until the infection is cleared up, hopefully will only take a few weeks but they are waiting for the final blood work to come back to know for sure what we are looking at...possibly E Coli but not sure yet. We do know that it is not a yeast infection which is a very good thing as it takes a year before treatment can be restarted...and we don't have a year to wait. Dr. Lee was very good to Mom today, rubbing her hair and reassuring her that she will be fine, that she will make it through this. Most likely she will remain on antibiotics for the next several weeks(hopefully she will at least be able to come home tomorrow or Monday but unsure right now), and then she will have a port or portacath(a small medical appliance that is installed under the skin with a catheter that connects the port to a vein and is used for the same reasons as a PICC line.) installed and treatment can resume next month sometime. According to Dr. Lee ports are less likely to get infected and do not have to be flushed and cleaned as often as a PICC line.

Needless to say, Mom was pretty upset. First because she is stuck in the hospital again, second because she was doing so well a few days ago and third because well, it just sucks! And it's scary and depressing and all those other things...we just don't know what is going to happen now. The whole "routine" is thrown out the window until this is taken care of. We don't know for sure she'll be able to continue to receive the chemo and if she can, when...

So, I'm home for a little while now but gotta go get ready for the big party tonight. She wants to be sure that everyone knows she's thinking of them, she loves them and is so overwhelmed by all the love and support she has received. She's sorry she can't come tonight, she really wanted to be there...but we'll go and we'll have fun and take lots of pictures and maybe even raise a little money to help them out. But for me, its so much more important that she knows how much everyone cares, just how much everyone is pulling and praying for her to come through this. And that's why I want this night to be successful.

Bad day today...

Yesterday Mom was feeling great. All of us(Cale's family too) went out to the house for dinner and she was doing well, just a little tired after a long day. I didn't call this morning as I figured she and Joyce would call me if they needed anything and I had some things to take care of at home today.
About 2 my dad called from work and asked if I could head over there...Mom had developed a fever over night and wasn't feeling very good today. He said she spiked to 102.5 in the middle of the night and had chills and the shakes a couple times today. But she was being stubborn about calling the doctor because the fever would go down after taking some Tylenol...well, by the time I got there she had called the doctor. She told us to go over to the Corvallis ER and she would meet us there.
We got over there and into an ER room about 3:30. They took several blood samples to run tests and do a culture on, plus a chest x-ray and urine sample. Her temp was up to 104.5 for several hours and she was having BAD leg cramps and chills. She was shaking so bad her teeth would chatter. They gave her Tylenol about 5:30 but she wasn't able to keep them down. (If you haven't seen the vomit bags in the hospitals, I gotta say they are about the coolest invention I've seen, wish I had some to put by the kids' beds). About 6:30 Dr. Lee got there (who had a very sad story to tell about a patient she lost today) and they tried to give her some potassium pills for the leg cramps but they didn't go down well either. They finally got the IV antibiotics going about 6:30. All of the tests so far have come back normal so they aren't sure what is wrong with her, said we might know more tomorrow after the culture is completed. In the meantime, she has to stay in the hospital and will continue to receive IV antibiotics every 8 hours or so. We finally were able to move out of the ER and into a room at 8. Dad came over about 8:30 and Joyce and I left at 9. Not sure how long Dad will stay with her tonight - last temp check she was down to 101.9.

I wonder sometimes about how much info to share on here...what's too personal and what's too graphic...but I want to be able to remember what happened and how I was feeling and details that I might forget about later, so I write what I feel like writing at the time...

Today was really, really hard for me. Joyce was there and we tried to keep the mood light but Mom was really, really sick. She would lapse in and out of reality, she would moan and rock back and forth in pain. She was singing to herself and would talk in some made up language and then all the sudden she would be back and would hold a totally normal conversation. It was hard to watch. I didn't break down until I got home - I made Kam put the kids to bed before I walked in the door so they wouldn't see me crying...it was hard, really hard. I know that these are symptoms of a high fever but it doesn't make it any easier. So now it's almost 11 and I'm still up, I'm exhausted and have a long day ahead of me but it is what it is and we'll get through it one day at a time.

Doing good!

Forgot to write an update last night when we got home from Portland...what a busy couple of days this has been.
We left town about 9:45am to head up to pick up Joyce from the airport. After that we headed over to OHSU and has some lunch and wandered around the hospital for a bit waiting for 2 for Mom's appointment with Dr. Fleming. Joyce and I stayed in the waiting room and chit-chatted until they were done.
Her appointment went well. She is reacting just as she should and everything is going as hoped for. Her WBC was 2.0 yesterday and her platelets were up to 29. The neutrophils were at .5.Her WBC had doubled in 24 hrs. Dr. Fleming reassured Mom and Dad that he was in close contact with Dr. Lee and was watching closely how the treatments are going. He also explained why she was receiving the 12 doses instead of 6. Any patient over 60 has a greater risk so they really try to kick its butt. Anyway, she had to go back to Corvallis this morning for blood tests again...after waiting from 9:15 until 11:45 for the results, most of the numbers were the same...except for the neutrophils, which are now at 1.0. This was great news and it means that her immune system is now functioning on its own and the flowers/fruits/vegetables restriction is lifted until after her next treatment. It also means that she isn't house bound, although she does still need to stay away from large crowds and sick people - she has an immune system but it is very fragile.
She was very excited about it as it means that she CAN go to Casino night this Saturday.
So the plan right now is to give her about a week off, she doesn't have to go back for tests again until a week from Friday...then depending on her blood counts she'll go back for chemo again on May 3rd.

Lots of tests, lots of time...

Mom had a 9 o'clock appt again this morning for another round of blood tests. She was fully expecting that her numbers were up and she wouldn't need anything. WRONG! Her WBC is now 1.0 but her neutrophils are only at .5. Her platelets were 7 and she needs red blood too and her potassium is still low.

The doctor wanted her to get the platelets right away but said we could maybe wait on the red blood until Wednesday or Thursday. She has a doctors appt in Portland tomorrow so we couldn't do it tomorrow. Mom and I both really didn't want to see her go backwards since she is feeling pretty well, so we asked if it could be done today too...so she's back in the hospital right now getting her first of three units of red blood.

We sat in the infusion room for about 2 1/2 hrs waiting on blood tests and for the blood bank to say if they have the platelets and blood to give her. I finally gave up and left her there and went to her house to get some cleaning done. She was able to get the platelets in the infusion room and was done with them about 1. She called to say she was headed over to the hospital to be admitted for the rest of the day. I finished up at her house and headed back over to Corvallis...they finally brought in the red blood about 3:45 and we are hoping she'll be done with all 3 units around 11 tonight. I'm going to go back over there around 9 to hang out with her until she can leave. We didn't want her to stay overnight in the hospital because we need to leave for Portland about 9:30 in the morning and there is NO WAY you can count on the hospital to do things in a timely manner.

As I sat there with her today and as I left her so I could get something else done I kept thinking about my situation...I've been free to do whatever needs to happen with Mom. I WANT to continue to do this. It is a burden to ask others to go to these appts, it isn't like asking someone to go to a doctor's appt, you never know what is going to happen...sometimes we're done in an hour, sometimes it's an all day thing...and it can be scary too when things don't go as we thought.
But eventually a job will come my way and I'll have no choice but to take it. It's so hard to look ahead, each day is different and unexpected and I cannot imagine how it will look when I'm trying to hold down a full time job too. So for now, we'll take each day as they come - I'm doing that in many, many aspects of life right now, planning for the future just doesn't seem possible.

Another week down...

This week has been a roller coaster, lots going on and mind spinning in a thousand directions. But Mom is feeling better and even decided to go to church this morning. She did really well but was tired after...hopefully it didn't wear her out too bad.
Thank you again to everyone who stops by and chats with her, who calls to check in with her and with me - it really does mean everything to know there are so many people in this community who care.
Back to the doctor in the morning to check her blood counts again, then to Portland to pick up Joyce and see the doctor up at OHSU on Tuesday. Just gotta wait and see what this week brings us.

Casino Night is almost here!

Don't forget to get your tickets to come to Casino Night next Saturday(the 24th). We have had a great response from the community with donations, now we NEED people to come! Come, have fun, see my mom and enjoy a night out!
For tickets call either Debbie Hanslovan 541-926-9331, Marjean Johnson 541-926-1941 or myself 541-928-0230.

Tickets are $10/person, evening starts at 5:30, auction starts at 8.
Riverside Community Hall, Riverside Dr in Albany

Back to waiting...

Mom's numbers were a little bit better today. Her platelets have risen to 12 from 6 on Monday. Her WBC and neutrophils are still extremely low, with only the WBC moving to 0.3 from 0.2 on Monday. But things are starting to go in the direction we want them to now. She did not have to have any blood products today and doesn't have to go back in until Monday. In the meantime she is stuck at home and is getting pretty bored...not feeling too bad but can't go out in public. A neighbor brought over 21 goats to eat through the field so she is keeping entertained by them...there is a 2 wk old that is just sooo cute! :) But they'll probably be gone again next weekend.

So for now, we are watching for rashes, fevers and mouth sores and keeping antibiotics and potassium supplements in her and waiting for her numbers to come back enough so she can do a little visiting.

The last few days I've been feeling that we made the wrong choice in going to Corvallis for treatment. Things haven't been going smoothly and the comfort that I found at OHSU and the staff and routine there has been missing. But after this morning's meeting with Dr. Lee I've realized that this is just the way it goes with consolidation therapy. OHSU ordered the treatment schedule that we followed, 12 doses in 6 days, instead of what originally thought of 6 doses in 6 days. Dr. Lee was just as worried about her numbers from Friday as we were. She called Dr. Fleming and voiced her concerns but he reassured her that the numbers are normal, the timing is normal and things are going as they should. She would have been at home this week no matter where she received this last round of chemo, and we would have had to drive to Portland last week for blood tests, instead of Corvallis. Dr. Lee is in constant contact with the doctors at OHSU and they are keeping an eye on her - phew!
So anyway today's blood counts...um, not what we expected! Friday before she went to the hospital her WBC was 0.2...today it was still 0.2. Her neutrophils were 0.0 on Friday and today still the same. Her RBC is up a little from Friday but still not where they should be. And lastly her platelets were down from 9 to 6, so we're going backwards even after 2 units of platelets last week. So Mom and I spent 5 hours at the doctors office this morning; she received another unit of platelets and got her PICC line dressing changed(which looks a ton better this week).

We go back to have tests done again on Wednesday and most likely Friday. Then next week she goes back to Portland to meet with Dr. Fleming. Dr. Lee says that they will do a CBC there and depending on the results, she may either have a bone marrow biopsy done up there, or if the numbers are still low, Dr. Lee may do it at her office around the 23rd or even the next week. Her next round of chemo can't be scheduled until after her numbers recover. It may be the week of the 26th or maybe the week of May 3rd or later, we just have to wait and see.

Home

Mom was able to leave the hospital yesterday morning, Cale went over to pick her up. She is feeling MUCH better. You don't realize how much and how fast the blood supply can affect your well-being. She rested at the house yesterday and I think was able to get some good rest.
Today we are all going over there to have lunch with her. She is really missing everyone and we are all healthy right now, so lets take advantage of it while we can!

Back to the hospital

Well, the last day or so hasn't exactly gone how we thought...Wednesday evening she got a fever and had some bleeding issues so we've been watching her VERY closely...She called the doctor and they said to keep an eye on it but she didn't need to go back in immediately. By morning her temp was back down and no more bleeding. Yesterday she was very tired and no energy but not feeling "bad".
So this morning she had to go back to the doctor for more blood tests. (I couldn't take her so her friend Millie did)...I just got off the phone with her and they are keeping her at the hospital. Her blood counts did not improve. Her platelets went from 6 to 9(even with a bag of them on Wed afternoon) her WBC is down to .2 from 1.2 on Wed and her neutrophils are down to .00. So they are getting her prepped for a bag of platelets and 3 bags of whole blood right now, and I think they'll start her on IV antibiotics also. Don't know how long she'll have to stay there yet.

UPDATE***She will be in the hospital for the rest of the day and should be able to come home in the morning as long as her blood counts come back up some by morning. Her color looks ALOT better now than it did 3 hours ago, so I take that as a good sign. She is in isolation for now, back to masks and gloves in the room with her...and definitely no flowers or uncooked/unprocessed fruits and veggies.

ups and downs

Yesterday Mom was feeling pretty good. She was pretty tired but the nausea has settled down and the heartburn is much better. She said she was really bored yesterday. This morning I called and we had planned to go get a bite to eat to get her out of the house for awhile. She called me back a little while later and said she had a rash on her legs, was not feeling very good and had called the doctor. We went in about one o'clock for blood tests. Her platelets were down to 6 - anything below 10 is tricky and so she was in need of platelets immediately - the doctor had to get on the phone with the blood bank and tell them it was an emergency and we needed it at the office NOW. Her WBC was down to 1.2, anything below 1.0 and she goes back in the hospital...also her neutrophils were down to .09 and at .05 she has to go back to the hospital and be put on IV antibiotics. So we are right on the edge right now...she goes back to the dr office on Friday to see if things have leveled out. In the meantime, she needs to take her temp every few hours and watch to see if the rash gets worse. BTW, the rash(which is a bunch of red dots just under the skin) is due to low platelets, so its a good thing she saw it when she did. When I left her a little while ago she was really tired and not feeling well at all. Maybe tomorrow will be better.

Home again

Mom is home and resting for now. She hasn't felt very good the last two days, really tired, a little nauseous, a little dizziness and weakness, sore stomach and esophagus(who knew that would be a side effect?). We have to keep a close watch on her throat, a common and pretty serious side effect is sores in the mouth and throat. Her eyes have been bothering her a bit - I read the pamphlet about the eye drops, they say they help with blurred vision but they may also CAUSE blurred vision, huh? - so she's just not feeling really great. I took her to the doctor this morning to get her PICC line flushed and dressing changed; she had a bad reaction to the bandages she had previously so her whole upper arm is pink and broke out so now we have that to keep an eye on too. She had a shot to boost WBC production, which is pretty standard after chemo...it causes achiness and discomfort in your bones for awhile. She had blood drawn too, her WBC(white blood cells) is down to 2.2(normal is 4-11), her platelets are down to 21 (normal is over 100), so she'll have platelets given to her on Thursday when we go back in for another round of blood tests. I know more about blood and what it does and how it works than I ever thought I'd need to know...
I met Dr. Lee today too, she seems like a very nice, very caring doctor. She was very gentle with Mom and took a good long look at her arm, which reassured me, as the nurses in Portland didn't speak very kindly about the staff down here taking care of the PICC line(apparently it isn't used as often down here) and with it being a little less than perfect looking right now, well...

Hopefully we'll get through this week and she'll start feeling better again. I have to keep reminding her that this is a long, serious process - it's ok that she doesn't feel good right now but it will get better. She's been a little more emotional, which I think can be a side effect, but I also think could just be that the longer we all have this stress, the harder it gets to deal with it.

Happy Easter!

Church was great - the bells played and the choir sang and were lovely...now we are home and are planning a Guitar Hero tournament with the kids for the rest of the day. Not our usual Easter Sunday but is what feels right, right now.

The last few days seem to have flown by. Mom has been feeling a better, they've been keeping her full of anti-nausea meds which seem to do the trick. The girls and I went over yesterday afternoon and spent about an hour with her, she was getting antsy to be home. After we left there we went over to the house and did a quick cleaning - sweep, mop, vacuum, etc...to get ready for her to come home.

This morning we headed to church about 10. A few minutes after we got there she called and said they released her and her and Dad were on their way to church to eat some breakfast with us. She came in and ate and then left again, she decided she didn't think she could make it through the service. So they went home and she is resting, I don't think we'll go over to see her today but I'll see her tomorrow. She goes back to the hospital tomorrow for some meds and to have her PICC line cleaned. I think she goes in again later in the week for blood tests. Her WBC and platelets are getting pretty low now(which is good) so she may need a transfusion soon too.
Because this treatment is a little different from the last round, she has antibiotics to take at home(she had them in the hospital too) to keep illness at bay, plus they now have her on eye drops to keep her eyes healthy, the chemo can create problems so she'll continue to do the drops during treatment. That's all I can remember for now, I'm sure I'm forgetting something that's coming up. :)

This is the day that the Lord has made; Rejoice and be glad in it!

Tuesday night was a rough one for Mom. She has had quite the selection of roommates while in the hospital. Tuesday night she had a 90something lady who hallucinated and talked all night long. They ended up having 2 nurses in the room with her all night to keep her from trying to leave. She would go from wanting to go home to asking if they liked the puppy in the corner to crying, so needless to say Mom didn't sleep much. They finally moved Mom to a new room yesterday afternoon but the rough night really took a toll on her. I had planned to take the kids over to see her but she just wasn't feeling up to it. She has had a little bit of nausea. When Dad was there after work she got sick, and she wasn't able to eat much last night. I talked with her this morning and she was feeling a little bit better but I think things are not going as well as she had hoped and its starting to get her down. I'm glad she only has to be in the hospital for a couple more days. So, I'm on my way over there now to try to help take her mind off it for a little while, play some cards or something...
We are also very excited because Mom's best friend from Nebraska is coming out to stay with them for a week...she gets here the 20th and will be here for casino night (which Mom is really hoping she is up to going to)...so glad that Joyce will be here soon!

I almost forgot to mention, her new room# is 2402-2, the extension to her phone is #2432.