Wednesday, January 26, 2011

Yippee

Yesterday when we went in and her neutrophils had dropped to 1300.  We were okay with that because she was still above 1000.  By the way I have been spelling neutrophils wrong all the time.  Sorry for the confusion.  She got arsenic yesterday but we were there for quite a long time.  It took the cardiologist a long time to read her ekg.  When the doctor talked to us yesterday he told us that we are waiting for the magic number of 30 doses of arsenic and then a bone marrow biopsy will be done. She has had 24 doses.  After they get the results of the the biopsy we will know what direction we will go.  We are praying that she can get the stem cell transplant.  It will be so much better in the long run.  Dr. Peterson also told Alyssa she can drive.  I think Alyssa was going to jump up and kiss him.  She was so excited.

When we got up to the clinic today they got the ekg read very quickly.  We were only in the hospital 5 hours!  We were very excited about that usually we are there closer to 6 hours.  When we got her numbers for the day we were shocked.  Her neutrophils were 2500.  We both just about fell off of our chairs.  On her report there are NO "L" behind any numbers.  (Remember that the "L" is low in her counts)  Alyssa was so excited, I guess the number dance that we did last night worked.  All in all we had a great day.

Monday, January 24, 2011

Another day of good numbers

We had arsenic today.   Alyssa's nutra fills stayed at 1600.  We were thrilled.  Also they give us a print out of her labs everyday and every time when we look at her white blood cells,  red blood cells there was always a "L" behind the numbers.  Today is the first day there was no L.  They told us that she is no longer low in those numbers.  The nutra fills still have a "L" behind it. 

We talk to the doctor tomorrow and we are very anxious to see what they say.  Alyssa is feeling good tonight.  I think that we are going to eat dinner and play sequence.  Wish me luck because she usually beats me. 

Sunday, January 23, 2011

Drum roll please

We went up to the clinic today and waited for 1 1/2 to be told that her rate was to high.  The good news is that her nutra fills went up to 1600!!!!!!  We hope that they stay up there tomorrow.  We promptly went home and had lunch and made banana bread and had a good Sunday. 

Yesterday more poison

Well yesterday we went into the clinic and we were really thinking that we would be sent home because of the throwing up episode.  We got in there and they took her ekg and it came back low enough to get some more poison and potassium.  They started the potassium while the arsenic was getting mixed.  They both take 2 hours to get through.  We waited for a hour for the arsenic.  I guess that is better than last Saturday.  Her nurtra fills went down to 900. 

My parents met us at the hospital and we went to Clearfield to a quilt store that mom wanted to show me.  They got us dinner and went home.  Alyssa was really tired and had a headache.  They told us to stop taking the potassium pills and see if that is the culprit of the throwing up.  She didn't throw up at all yesterday and she was thrilled about that.  We have got prepared for the drive home now with throw up bucket, trash bags, paper towels and hand sanitizer.   We hope that we don't need it anymore but you never know.

Friday, January 21, 2011

some more poison today

We went up to the clinic today and they said it was okay to give some poison.  We waited there and got the dose today.  We are getting really good at playing games.  When they told us her nutra fills numbers for yesterday and today we were very excited  Yesterday it was 800 and today it was 1200.  I asked what the number would be for a person that doesn't have leukemia.  They said that it varies on if you are fighting a sickness or not.  They told me the numbers should be 1800 to 6300.  So she is getting there.

When we were driving home Alyssa got sick, thank heavens we had put the throw up bucket in the car from the hospital.  Usually when she throws up her numbers for her heart go up so it will be interesting to see  what they are going to be tomorrow.  We can't figure out why she is throwing up after getting treatments.  I guess we will see what tomorrow brings. 

Kirk and Kelsey tell me that it is freezing in Nebraska.  I am glad that Alyssa is not in that kind of weather because I don't know how we would keep her well.  We are both looking forward to going to a matinee show one of these days.  We have to go to a matinee show because usually there are less people there and we have to sit far away from other people so she doesn't have to wear her mask.  We don't know what is playing but I keep trying to come home a different way and we have found all sorts of things that we didn't know were by our house.  We have found a shopping mall, a theatre and the most important of all a fabric store.  Hope all is well in everyone's life.  Don't forget to tell the ones you love that you love them and give them a hug.  You never know what tomorrow will bring. 

Thursday, January 20, 2011

Another Break

Well we went up to clinic today and her numbers were still too high.  Her nutrafills were not in yet.  Yesterday they stayed at 700.  We thought that she wouldn't have arsenic today because we thought her body usually takes 2 or 3 days to get low enough to have it again.  We are really hoping that she can get it tomorrow and then we can maybe get on the 5 days on, 2 days off schedule.

When we found out that we didn't have to spend all the time in the clinic we decided to drive to my parents house.  It was so nice to get out of Salt Lake.  We had turkey burgers at Maddox.  These are our favorites and we were so excited to eat them.  We played a new card game with Mom and Dad and had supper with them.  

Wednesday, January 19, 2011

Much needed break

Sorry haven't posted for a couple of days.  Yesterday was her 6th day of arsenic.  In the middle of having it she threw up.  This is the first time she has thrown up since leaving the hospital.   After coming home she was pretty tired.  They want to get 30 doses of arsenic in her and then do another bone marrow biospy and see what kind of remission she is in.   She has had 20 doses right now.   Her nurta fills just don't want to come in.  They are usually sitting around 700. 

When we  went up to the clinic today her heart rate was too high.  Alyssa wasn't too sad to hear that.  We needed to go to Provo to get her work to sign a paper so it worked out really good.  It was good for Alyssa to see Provo and see some of her friends at school.  Her boss told her again that she has a job when she gets back to school.  That made her feel really good.

We are hoping it doesn't take too many days before her numbers drop again to have another dose of arsenic.  Last time this happened it took her body around 4 days to come down.  We would really like to get those doses in as fast her body would let it.


P.S.  I am glad that Lisa is doing well and I thought I saw you guys in clinic today. 

Sunday, January 16, 2011

4 days and counting

Well we just got back from clinic.  We have had 4 days of arsenic in a row.  We are hoping that she gets it tomorrow and hopefully we will get a 2 day break.  Yesterday was a frustrating day.  We had to wait for 2 and half hours just to have the cardiologist look at the ekg.  After her looked at then we had to wait another 2 hours to have it put in her.  Mom and Dad brought us Maddox dinner last night.  For all of you that don't know what Maddox is, it is my favorite restaurant in my parents town.  I always have to go there when I visit them.  After dinner we played a game with Mom and Dad.  It was nice to have someone else in our house besides us.


Alyssa I think is getting tired of just seeing me.  I am trying to drive her to places so she doesn't feel so cooped up.  I think that her records for church got moved here.  I talked to the bishop and told him that they were coming but it was temporary.  We have to go to Provo one day to talk to her work and her professors.  I am sure that will do her good to see her old stomping grounds.

Thursday, January 13, 2011

15 minutes

Yesterday we went up to the clinic to be sent home.  Her heart rate was to high.  Today we didn't think that we would be having arsenic but they surprised us and told us it was okay to have it today.  We were just getting ready to walk outside to walk around outside and they called us and told us the arsenic was ready.  It was done in 15 minutes.  It was so nice to have it done around 3:30.

 Alyssa was doing okay afterwords so we ran to the grocery store before the storms come our way.  All in all it has been an okay day.  I think that she is getting tired of going up to the hospital every day.

Tuesday, January 11, 2011

Some more arsenic

We went up to the clinic and got her blood tested and they said she was good to go for arsenic.  Today we decided to leave and have lunch while they were mixing the arsenic.  That was so much better.  Thanks mom and dad for olive garden.  It was very good.

Her nurtrafills dropped to 600.  They said that there was a blast in it but they tested it and it was not APL.  They say that is normal when your bone marrow is coming in so don't be alarmed.  I also got a call today telling me that Bryan and Kelsey are not a match to Alyssa.  In fact she said asked me if Bryan and Kelsey belonged to us because they were so different.  She checked the bone marrow bank and said that there are 40,000 that match Alyssa.  We are not going to go down that road until we know that we can't take them from Alyssa.  It made me fill better to find out there were so many matches to Alyssa.


She is very tired tonight.  She gets so bored at the clinic.  I hope that her numbers go up tomorrow and she gets to have another treatment. 

I sewed a few seams today on a quilt and I felt like my old friend was back.  I am glad that our lives are getting back to some sense of normal.  Our days are filled with going to the clinic but we can eat our own food and sleep without anyone bothering us.  I am grateful that Alyssa is doing as good as she is doing.  She misses her friends and her old life.

Monday, January 10, 2011

Well I thought I would never say I am glad she got arsenic

We went up to the clinic this morning and got her ekg done and waited for the cardiologist to read it to see if she could get the arsenic today.  Yesterday it was higher than Saturday.  They gave her potassium and calicum.  They also told me to give her magnesium 4 hours before coming to clinic.  This morning I gave her magnesium at 6:00 am in hopes that would help her so she could get her arsenic.


After waiting for a hour at the clinic they came in and told us that we could get arsenic.  The nurse said that she thought it would be a half hour for them to mix the arsenic.  2 hours later it was done.  After hanging the arsenic it takes another 2 hours to get in Alyssa.


We decided today that we are going to get the results from the ekg and then leave and they can call us when it is mixed up.  It was a very long day.  Her nurtrafills went up to 800 and they told us a normal person has 2000 nutrafills.  All of her other counts have gone up to so we are going in the right direction.

We saw some friends up on the floor that we met while in the hospital and we hope all goes well with Lisa.  All of these people have come our extended family and we wish them the best for all of them.  We saw a guy that was in the about the same boat as Alyssa.  His last semester at BYU-Idaho would have been this semester.  He wanted to have a reeses pieces iv drip so one of the nurses made him one.  It was great.  His wife is expecting their first baby.  She is only 11 weeks along.  He had a great attitude.

On a side note Alyssa and I decided to go on a adventure before going to clinic.  We looked up some quilt stores on the internet and printed off the directions.  We were very proud of ourselves that we found the stores.  We were very disappointed when we got to the first store because it was not open today.  It is only opened  Tuesday- Saturday.  We will have to try some other day.  Also,  I am very glad I am not in Omaha right now.  They had a snow day today and tomorrow.  I miss Kirk and Kelsey very much but very glad that I don't have to drive in that mess!

Saturday, January 8, 2011

No arsenic

We went to the clinic and they took her labs and waited for 1 1/2 to see if she could get her treatment today.  They came in and said that she was a little over the number.  We think this is going to be the pattern 2 days off 1 day on.  We went to Walmart and got a few things and then went to the fabric store. 

Alyssa was so excited to wear clothes and drive around in the car.  She said that it was so nice to sleep all night and not have someone coming in all the time to take her vitals.  Hopefully her heart will let her have a treatment tomorrow. 

Friday, January 7, 2011

Home Sweet Home

We are finally home.  We didn't get home until 5:00.  Her nutrafills went up to 700 from 500 after having arsenic yesterday.  Her heart number was too high today to have arsenic.  We knew all day long that we were leaving and it was driving Alyssa crazy that she couldn't leave.  She has to have home health for two dosages of magnesium.  They were suppose to deliver the iv and someone was suppose to come and show us how to adminster the magnesium.  I just called them and they are delivering before 8 tonight. 

Alyssa was so funny when we were driving home.  She said is was very strange to be in the passenger seat in her car.  She just looked around and took everything in.  It is funny how much you appreciate the little things that get taken away from us.

What are schedule will be from now on is that we will have to go up to the hospital everyday and they have to test to see if they can do arsenic.  If they can they do it we will stay there,  if they can't we will go home.  When her nutrafills get to 1000  they will do another bone marrow biopsy and see what is going on. 

Alyssa still has to be very careful around a lot of people.  Our days will be filled with going to the hospital and then coming home.  She was pretty funny walking up the stairs she couldn't believe how tired she got going up the stairs but she is such a trooper and she said this is really good for me.

Wednesday, January 5, 2011

Friday is the goal

Alyssa's counts stayed at 500.  Her white blood cells went up 500.  She is going in the right direction.  They have taken away all of the antibiotics except for one.  They have upped the magnesium in pills and they are giving her only one bag of magnesium in the iv.  She use to have that always going in her iv.  When she goes home we will have home health care and she will have magnesium at night.


The goal is FRIDAY TO GET OUT OF HOSPITAL.  If all goes well without all of the iv's then she can go home and continue the arsenic as a outpatient.  Her heart number was just above the right number today so she had a break again today from it.  She went on another walk outside and it made her feel real good.  Pray that no more set backs will occur between now and Friday.

Tuesday, January 4, 2011

The magic number of 500

Well Alyssa has finally hit the magic number of 500 for her nutrafills.  The doctor just left and said that she is finally making the good stuff.  She has started taking her off some of her antibiotics.  Tomorrow they will take her off some more and see what her body does.  Her number for her heart was too high today so she is not having arsenic today.  The doctor also told her she can go outside every day if she wants to. 


Her spirits are so much better than before.  I think that she can see the light and the end of the tunnel.  I suspect when she gets released we will come up here everyday and they will do a ekg and then see if she can have the arsenic or not.  I am sure when she starts doing the treatments on a out patient basis it will be an all day event but then she can go home at night. 

Hopefully she will be out of here by the end of the week.  I don't want to get my hopes up but I hope that is what happens. 

Monday, January 3, 2011

Going Outside

Alyssa had a bad night.  Apparently her iv pumps kept going off for no reason.  Her nurse Meghan was really ready to throw the pumps all out.  Kirk said that she changed pumps, tubes and everything else in between.  Kelsey got her blood taken to see if she is a match to Alyssa.  As soon as she got that done Kirk and her went back to Omaha.  It was a sad moment.  Alyssa just cried when they left.


When the nurse came in today I asked if he could mention to the team of doctors in rounds today if she just go outside for a minute.  He said that they needed to have the cardiologist come in and give  his okay.  The nurse kept coming in and asking if he had come in.  We kept telling him that we have not seen anyone.  The cardiologist finally came and said that other than having leukemia she was pretty healthy.  They just say that she is a puzzlement to them because her heart rate goes really up when she gets up to walk and her resting heart rate is higher than normal.  They did a thyroid test to see if it was functioning correctly.  It came back normal.  They came to the conclusion that her heart just beats rather fast but nothing is wrong with it.  HE GAVE THE OKAY TO GO OUTSIDE.

Nurse Meghan.  This is the cute nurse that gave her the chemo sucks buttons.

Outside the emergency room.  Too bad we can't see her smile.

Walking buddies.
 Dr. Peterson came in and said that she could go outside.  Alyssa about did cartwheels.  Her nutrafills went up to 400 today.  She is still in  the waiting game and had another round of arsenic.  The outside did her good.  The cardiologist just couldn't understand why she wanted to go outside in the cold.  Alyssa I think was going to hit him when he said that to her.  It was pretty funny. 

It is pretty lonely around here without all of the family.  I hope that it is not too long before Kirk and Kelsey come back for good. 

Sunday, January 2, 2011

No arsenic today

Alyssa threw up 3 times yesterday.  We asked the nurse about it today and she said with this disease you have to just take one day at a time.  Kirk  and I think that her body was saying I have had enough of arsenic give me a break.

Her heart  was not the right number today so she got her break.  She has had a pretty good day.  She has started reading a book today and I think that she is excited that she can read and remember what is going on.  Her nurtrafills went up to 400 today.  She is still going in the right direction.  When Dr. Peterson came in tonight he said that they need her nurtafills to stay above 500 for a couple of days and then they will take her off of the antibiotics and see what she does.  After that they need to wait to see if the cardiologists will let her go home.  He told her that sometimes they are more strict than the leukemia doctors.  Her face just fell when he said that.  He asked her if she has been outside.  She told him no.  He said that he would talk to the cardiologists about that and maybe she could go outside.  I am sure that will make her feel better.

I told her that we don't need to worry about that right now.  We just need to get your numbers  up and then we will go from there.  Bryan left to school tonight.  Kirk and Kelsey are leaving tomorrow as soon as Kelsey gets her blood drawn.  I am sure it is going to be a hard day tomorrow.  I don't want everybody to go and I am sure that Alyssa doesn't want them to go either. 

Saturday, January 1, 2011

Family fun and some more nurses

Together at last

Kelsey with her mask on

Nurse Kyle.  Alyssa likes him even if he wears the Utah Utes all the time

Playing games

Kirk explaining the game to us

Happy New Year

I hope that everyone is enjoying the day.  Kelsey got here safe and sound.  She had the stomach flu when she flewin so she didn't come up to the hospital.  Yesterday when she was up here she wore a mask all day.  She has gotten a new appreciation for when Alyssa wears her mask.  I took her yesterday to get her hair back to brown.  She looks like Kelsey again.  It is soooo good to have all my family here.  I will post a family picture when Alyssa wakes up.

I am so thankful for my family the support that they are to me and Alyssa.  It has helped Alyssa to have her dad, brother and sister here with her.


She is having her 8th round of arsenic today.  Her counts are coming in slowly.  Yesterday her nurtrafills dropped to 200 and today they came back up to 300.  They say she is doing well.  I just wish her counts would come in faster.  She is really getting tired of being in the hospital.  We have played some games and watched some movies but it is not the same as being away from the hospital.  Bryan's blood has been taken to see if he is a match to Alyssa.  Kelsey's blood will be taken on Monday.  If the weather is good Kirk and Kelsey are going back on Monday.  Bryan is going back tomorrow and then Alyssa and I will be alone again.  It will be a sad day. 

 I hope everyone will have a good 2011 and remember to hug your loved ones.  You never know what is around the corner.