In full remission!!!!!!!

We just got home from Salt Lake.  The doctor told Alyssa that she is in full remission.  Everything else looks great.  She is a little low on Vitamin D so she has to take some supplements.  They told her to go about living her life.  She will need to monitor her blood and bone marrow for the next year or so.  She will have to go up to the clinic every two months and they will do a blood test one month and the other month they will do a bone marrow biopsy. 

We are so happy that her life has been spared and she go on and live her life.  She is going to move to Provo next Friday.  She is going to take 7 credits in the fall and work part time.  She is getting pretty excited.  I am a little scared to let her live on her own but I will get over it.

Bryan found a place to live in Ogden (this is where he is going to school) and will be moving sometime this month.  He is excited to be close to his school.  I got a job in Logan so we will be moving somewhere in Cache Valley.  Logan is about 30 minutes from where we are living right now.  We have to go through a mountain pass and it is not fun during the winter.  We would be about hour away from Bryan, 2 hours from Kelsey and 2 1/2 hours from Alyssa.  This is so much better than 16 hours!

We have renters moving into our house this weekend.  We still have it on the on the market but this renter wants to buy it but just can't swing it right now financially.  We will probably rent something in Logan for awhile until it gets sold.  Life is sooooooooo good!

All the tests have been done

All of Alyssa's tests are done and we are waiting for the results.  We will go back on the 11th of August to see what the results are.  They told her when she had her tests done that her numbers look good on paper. 

She has decided to go back to school in August.  She has 13 credits to take.  She is only going to take 7 this semester and 6 next semester.  Her classes that she needs to take for her major are only offered in January.  She is just taking classes that sounded fun to her to get the credits in.  She is in the process of taking her tests that she missed last November.  One professor doesn't come in during the summer so she can't do anything with that class until after school starts.  She found an apartment in Provo that is really nice.  She has her own room and is very clean.  I am excited for her but also very nervous.  I am glad that she is starting to get her own life back.


Still looking for a job, waiting for our house to sell.  This is getting very old.  I have forgotten what my things look like that are in the storage units.  Keep you posted on the 11th.

July 27th is the Day

We went to the clinic on the 11th and they have lifted all restrictions for Alyssa.  She is trying to find a job and deciding if she wants to go to Provo in the fall or winter.  Decisions, decisions, decisions....  She goes on the 27th to have all of the tests done.  On the 11th of August we go back to the clinic to have them tell us that she is in full remission.  I will do better at updating around the 11th. 

We have kind of a offer on our home.  It is contingent on the buyers selling their home.  It is still on the market and they have 12 hours to respond to any offers that we get.  They have 60 days to sell their house.  If it doesn't sell by then they can walk away from the offer.  Hopefully this will work we are really wanting to get into our own home.

I have a job interview with USU (Utah State University) on Monday.  I hope that I get it.  I think that it would be great to work there.  It will be a receptionist  job and part time.  Maybe I could go back to school....  Wish me luck!

We are down to one month appointments

We just got home from our clinic visit.  We didn't go last week because the clinic called  and told us that they were slammed with patients.  They asked us if we could go to Bear River Hospital to get her blood work done.   We did that and they told her to stay off bactrim for another week.  They give her bactrim to protect her from a fungus that she  could get after a transplant.  The reason that they told her to stay off of it for another week is that it was making her platelet counts come down.  After seeing them today they told us that her platelet counts were 144.  Normal is 150.  They told her to take the bactrim 3 times a week.  On next Friday we have to go back to Bear River to get her blood taken again.  If her counts are still coming up then she will continue taking it 3 times a week.  If the counts go down then they will adjust it.  We don't have to go back to the clinic until the 11th of July.  It feels great not to have to drive to Salt Lake every week.

Alyssa has had an emotional last couple of weeks.  She is having a hard time dealing with everyone's life continuing and hers just stopped abruptly.  She is trying to make some friends at the single's ward here (that is a church group that is made of kids her age).  She is trying to find a office job right now.  I think that she is afraid to get back to studying her classes that she needs to take the finals in.  I am trying to get my life back to normal and she is a little jealous of that.

On a side note, we still haven't sold our house.  We have lots of lookers but no buyers.  Does anyone want to buy our house????   I got a part time job at the quilt store here in Brigham City.  I am very excited about it.  Bryan is still looking for a job.  Kelsey is doing good at her job and is going to start school in July.  Kirk is liking working from home.  Life is good.

Another visit to the clinic

We went to the clinic today again.  Everything looks good.  Alyssa will be off the steroids on the 2nd to June.  She is very excited to do that.  When that happens we will not have to go to the clinic every week.  They told her that she can go back to work as long as it is not with a lot of people.  She is go to see what she can find in a office setting instead of in the food setting where she was working at school.  She is so excited because Memorial day is the first holiday since November that she won't be in the hospital.  Hope everyone has a safe and happy memorial day. 

We are moving again

We got released from Salt Lake Valley.  The doctors said that Alyssa is doing better and we could now move to Brigham City with my parents.  I swear this moving thing is getting old.  I will be soooooooo glad when we don't have to move again.  We moved all of our stuff out of Kirk's mom's house today and into the storage unit.  We are going to Brigham City tomorrow.  We will still have to come up to the clinic every week.  I guess that is all that is going on right now. 

Clinic visit

We went to the clinic on Friday and the doctors are very pleased.  Her numbers are like a healthy 22 year old.  Her rash is starting to look better.  We need to stay in SLC for a little while longer to see what her rash does.  We need to go back to the clinic on Friday and we will know more then.  She gets tired very easy but she is very glad that she is out of the hospital.  She got to wear her contacts yesterday after wearing her glasses since November.  She was pretty excited about that.  We still have to be careful of germs and crowds of people until she has reached her 100 days out of transplant. 


Our house has been shown quite a few times.  We hope that it will sell soon.  Hope all the Mother's reading this had a good day yesterday. 

WERE OUT

We talked to the PA last night when we came back from our day trip.  We voiced our concerns about staying in the hospital.  The only thing that was keeping her here was that darn rash.  She has not had any side effects with the rash like fever, bloating or high blood pressure.  I told her that we lived 4 minutes away from the hospital and I have not left her side since this all happened.  If anything happened we would be up to the hospital immediately.  I told them if they wanted us to come up to the clinic everyday or every 4 hours we would do it.  The only thing that they were doing for her in the night was giving her pain meds.  I told her that we could do all that at home.  She then told us that we could leave again for dinner but just be back before 8:30 pm to get her night meds.  Alyssa was getting more and more frustrated as the day and night wore on.

When we woke up this morning the PA came in and told us that she took our concerns to Dr. Peterson.  He told her that he agreed with us.  So we got to go home today.  We have to come up to the clinic on Friday and they have to monitor the rash but that is okay because we don't have to be here.  After rounds they came back and asked her how she felt about getting her central line out.  We were thrilled to hear that.  We packed up her room and then sat around to have her central line taken out.  I can't believe how long it takes to be checked out of the hospital. 

We are so excited that this chapter of her life is done.  We are excited to start living again.  On another note the buyers of our house backed out of it so we are back to square one with that.  We have always thought that it will sell when the time is right.  Kirk and I were not to thrilled with the offer so I am sure that a better one will come along.  We have another showing on it tomorrow.  We hope that it doesn't take too long.  We are living in an apartment 4 minutes away from the hospital until Alyssa's rash has been cleared up.  After it is clear will move in with my parents until we can get into a house. 

Thank you all for all of your prayers and concern for our family.  Go give blood and think about being a bone marrow donor.  Alyssa would not be here if people had not donated those things.  Enjoy the little things in life. 

Very Frustrated again

Alyssa's rash is not getting any better with the steroids.  I asked this morning at 8:00 am if she could have a day pass again.  The nurse said she would talk to the doctor.  At 11:30 Alyssa asked for some more pain medication and I asked the nurse what the doctor said.  She told me that she had not gone to rounds yet.  Seriously.   Finally around 12:30 she came back with the pa.  They told her that they needed to take a skin biopsy to try to figure out what is going on with this rash.  I asked I why she needed to be in the hospital.  The doctor told me it is because of the steroids that they are giving her.  I told him I gave her things in her central line last time we went home.  He could never give me a straight answer.  They told her that she could leave but she needed to be back by 5:00.  By this time it was close to 1:30.  We went and got something to eat and did our laundry.  Played a quick game of skipbo and then came back to the hospital. 

Alyssa and I are very frustrated at this point.  We are really getting fed up being in this place.  I told her when we got back here that we needed to look for one positive thing a day.  Maybe that will brighten up her day.  I am at a lose as to what to do for her to help her.  Keep her and her doctors in your prayers to find out what is wrong with her and get her out of here.

Happy sunny day

Alyssa got another day pass today.  We drove up to Kaysville to see if we could find some houses we liked.  We then went to the apartment and made lunch and choc. chip cookies.  Alyssa had a nap along with her mom.  We then came back to the hospital.  Hopefully we leave the hospital tomorrow.  I guess we will have to wait and see.  Her rash seems better but not 100% yet.

Another day

Alyssa had a melt down last night.  I think everything just came to a head.  She thinks that she will never get out of the hospital.  She is afraid to make any plans in fear that something else will happen to her and she just wants her old life back.  While she was having her melt down the night nurse came in and she was so cute with Alyssa.   When we woke up this morning the nurse asked me what time I was going to my mom's birthday party.  I told her what time and then I asked her why.  She told me that she was going to see if Alyssa could get a day pass to go.  She went and found the PA and the doctor and they both said that my parents house was a little far to go but she could go somewhere within 30 minutes of the hospital.  She got released from her iv pole.  Kirk and her went to the grocery store and went to the apartment and made lunch.  Me, Kelsey and Bryan went to parents house for my mom's birthday party.

Kirk said that she got tired very easy but enjoyed not being in the hospital and hooked to the iv pole.  Her rash is slowly going away.  She seems to be in better spirits after having a good cry.  I am so proud of her.  I think that I would have a melt down long before this.  We still don't know how long we are going to be here but I am sure that we will get some more day passes to leave.  I can't believe how it helps her to just leave this place.

Better Day

Alyssa woke up with the rash all over her body.  When the nurse came in we told her that she needs to have something to stop this.  She agreed with us and told the doctors when she went into rounds.  She is eating good again and they have decreased her nutrition bag by half.  The dietitian told her that she is getting rid of that soon because she eats really good.  All of her meds have been changed to pill form and she has started to cut back on the nausea meds.  As soon as the rash gets under control then the pain pump can be removed.  They have given her steroids for the rash and that is helping a lot.

Her spirits are better.  We watched the "royal wedding" all morning long on the internet.  It was fun to watch.  I remember watching when Charles and Diana got married.  We really loved her dress and her sister's dress. 

All in all the day has been good.  Thanks for all of the love and support.

Breaking News

We sold our house this morning.  We are pretty excited that we don't have to worry about that anymore. 

Now on to Alyssa's news.  Her rash has continued to get worse.  They say that it is because her numbers came in so fast and her body doesn't know what to do about it.  She wouldn't push her pain button on the pain pump because she thought that if she didn't push it, that would make her go home faster.  We finally convinced her that her body can't get better if she is in pain.  The pain nurse told her this morning that she can be taken off the pain pump in the morning and go home that afternoon.  That seemed to encourage her so she has started to push the button again.

Her throat doesn't hurt anymore and she doesn't seem to have the thick saliva in her mouth.  She has eaten oatmeal and juice this morning.  She is eating mac & cheese, cooked carrots and mashed potatoes and gravy, & apple juice.  We went outside for awhile this morning and we are going to go out again. 

She just talked to the PA and they are going to try a topical cream to see if that calms the rash down.  They can give her steroids for the rash but that is the last resort.  She is discouraged because everyone up here has told her that she would feel so much better when her counts came in but she feels worse.  We keep telling her that she is going in the right direction and this is just a little bump.  We are still shooting to get out on Monday. 

The saga continues

Alyssa started getting a rash last night on her chest, armpits and face.  The nurse gave her some benadryl and then put her on oxygen.  I spent half the night reassuring her that she was not going to ICU.  When she woke up she still had the rash and it had spread to her hands.   I left and slept for awhile because I had hit my breaking point.  (Thanks Mike  & Lisa for the apartment, it was wonderful)  Kirk said that while I was gone she had some applesauce and a little bit of cinnamon roll and milk.  Also she had a little bit of fettuccine.  When I got back up to the hospital she started gagging on the thick saliva and the fettuccine came back up.  The PA came in and looked at the rash and ordered some cream for it.  He told her that he would start gradually converting her medicine back to pills. 

Her doctor just saw her and said that the rash might be graft syndrome.  It happens sometimes when the counts come in really fast,  which her has.  Her counts yesterday were 1200 today they were 6400.  He told her that she could go outside for a minute just to get her spirits up.  She feels like she is taking steps backward and they have reassured her that she is not.  Kirk told me that she has not pushed her pain medicine since 8:30 this morning.  Hope tomorrow goes better.   She wants so desperately to get out of here.

Dr. Peterson just gave us the best news

Alyssa woke up with a killer headache and her throat was killing her also.  The nurse gave her some more medicine to take the pain away.  Through out the day it is getting better and better.  We know the headache is from the neutraphils coming in.  Usually you get bone pain but she gets headaches.  She told me that her throat pain has gone down a lot.  She just has really thick saliva that she has to suction out so she doesn't gag on it.  When the nurse came in this morning she told Alyssa that her neutraphil number went up to 1200.  That is why such a severe headache.


When she took the few pills this morning she got them down on the first try.  Usually she had to try several times to get them down.  She has eaten a container of jello today. 

Now for the good news..........  Dr. Peterson just came in and told us that her stem cells have engrafted, so what that means is that the transplant has worked.  He told her it is now up to her, she needs to get off of the pain pump and the nutrition bag.  He told her that he is shooting for Monday to be out of the hospital.  When he left she told me she is shooting for Friday.  When this girl puts her mind to something she is very determined.  I guess we will see how this all plays out.


I can't tell you how happy I am right now.  It has been a long haul and we can see the end of the tunnel coming soon.  Hopefully we can start getting back to normal now.  We had 3 showings on our house in the last 2 days.  We have always thought something wouldn't happen with our house until Alyssa got out of the hospital.  

They are starting to come in!

Alyssa had a fairly good night.  She is frustrated because she wants to eat so bad.  She told me this morning that she just wants her throat to feel better.  She has lost all of her hair again and I don't think that she is as upset about it this time as the first time she lost it.  She just said that she is sad because she was just getting to like her short hair.  Now for the good news.......

Her neutraphils were at 100 today.  Hopefully they will start to come in fast.   She had 2 nurses doing the neutraphil dance for her last night and that made her smile.  

Happy Easter

Alyssa had a great night.  They changed her pain pump last night to have a continuous stream of pain meds all night.  She slept so much better.  She doesn't seem to have as much mucus today.  She still is having a hard time swallowing anything.  She has to swallow 3 pills that couldn't be converted to iv.  She is getting another bag of platelets right now. 

Hopefully her counts will start to come in tomorrow so she can start the road to going home.  She has to be off the pain pump and nutrition bag in order to go home. 

I hope that all of you had a good Easter with your families.  I am so looking forward to not celebrating anymore holidays in this place!

All IV meds

Alyssa had a horrible night again.  Her pain in her throat would not get under control.  They upped  her pain meds.   She was really scared last night because she was having a hard time swallowing.  She thought that she would have to go to the ICU last night.  I went and talked to the charge nurse and she told me what she is going through is very normal.  As long as her oxygen is up and she is breathing she is not going anywhere.  I went and told her that and she seemed to calm down a bit.  Last night she decided that all of her meds needed to be IV because she can't swallow anything.  They are going to give her the nutrition bag sometime today.  She has told me that her throat feels like it has a huge hair ball in it and she can't get it out.  She has a suction thing by her bed and that seems to help a little.  Her voice sounds like she has sucked on helium and then talks.  She still has her sense of humor.  I told her this morning that I was going to heat up  something to eat.  She said to me I am not going anywhere so I will still be here when you get back.  She is such an amazing girl her spirit and inner strength is incredible.  She feels lousy but she still wants to go on walks.


She has to get blood and plates today so that will make her feel a little better and give her some energy.  The pain pump has some pretty strong medicine in it and keeps her pretty drowsy.  The doctors have told her that she should start feeling better on day 10 which is Monday.  They also told us that Alyssa will probably know before anybody when her white blood cells start to turn on.  The reason is because they will start attacking the mucus in her throat first before attaching to the cells.  So she will start to feel better soon.  It is so hard to watch her suffer and I can't do anything to help her. 

Pain drugs

Yesterday went from bad to worse.  I felt so bad for Alyssa.  She was having a very bad emotional day.  Everything thing was coming to a head for her.  She was suppose to graduate from BYU,  she was in the hospital, she was sick and it was her birthday. 

They couldn't get her pain under control from her mouth sores.  She couldn't keep anything down and she just felt miserable.  It is so frustrating when you can't help her.  Around 6 this morning they put her on the pain medicine pump.  That seemed to help with the pain but she still can't keep anything down.  She said this morning that she just feels strange.  We talked to the nurse and she was going to talk to the doctor and see if the pain medicine is too strong for her or if they need to change the medicine. 

I hope that she doesn't have to endure this pain too long.  I don't know how much more she can take.  They tell her that the pain will go away as soon as her numbers start coming back.  As of this morning she was still at zero.  She received her first shot to help her neutraphils to come in yesterday.

On a side note, we still haven't sold our house.  Kirk's job is working out nicely working from home.  He loves the commute!  Kelsey has decided to go to Broadview University studying to be a vet. technician.  Bryan is still trying to decide what school to go to.  He has decided that he wants to do something with web pages.  I guess the world keeps going on even though we feel like it has stopped since we started this ordeal.

Happy Birthday

Well this day has not started off too good.  She had a rough night with her throat pain.  The nurses have been very diligent giving her pain meds all night.  When she woke up she tried some jello and promptly threw up.  She has managed to keep her pills down and she is resting nicely right now.  I hope that the day gets better. 

Kelsey, Bryan and I decorated her room last night while she was walking with her dad.  I was going to get a cake but I will wait and see how her stomach is later in the day.  I hope that she gets feeling better later on.  She is not to excited to celebrate her 22nd birthday like this.  I told her we will celebrate her birthday the right way next week when we are out of this place.  

Another boring day

Alyssa is really getting bored.  Her white blood counts are at zero and her blood counts are dropping but not enough to have a transfusion yet.  Dr. Peterson says it will probably  be on the weekend sometime.  She gets the shot to boost her neutraphils tomorrow.  Her throat is starting to hurt a little and they say that is normal from the chemo that she had.  She is sucking on popsicles and ice.  Hopefully the throat doesn't get any worse.  She has had many walks today.  She was so excited this morning because she told me on one of the walks that she has about a week left.  It has been a long haul and it is so exciting that we can see the end. 

Alyssa's numbers are dropping fast

The last few days have been pretty good for Alyssa.  Yesterday she kept all of her food down.  She is itching from medicine that they gave her to protect her mouth from mouth sores.  She seems to be in good spirits.  She loves not being attached to the iv pole.  She only has to be plugged in one time at night for one hour.  Her numbers are just about at zero.  They want it to go to zero then they can start begin building up.  On her birthday (Thursday) she will start getting the shot that helps boost her white blood cells.  She is really thrilled to be getting a shot for her birthday.  With the shot she will have bone aches because the bone marrow is coming in.  It is hard to have the pain but it also good because we know she is almost better.  Her new goal is to get out of the hospital on the 27th instead of the 29th. 

On another note I met a couple on the floor the other night.  I have been so impressed with him.  He was going into the doctor thinking that he had a kidney stone, but instead he was admitted to the hospital for 2 weeks.  He ran 9 miles the day that he was admitted.  He was training for the Salt Lake Marathon.  The marathon was on last Saturday.  Alyssa and I saw him walking that day with his shirt on from another marathon and his medal that he received.  I saw him later that night still walking.  His wife told me later that he told her he needed to do 26 laps around the hospital the same has the marathon.  He started at 7:00 am just like the marathon.  He finished that night at 9:52.  He would do it all day long taking breaks.  She also told me that her son went to school one day and then came home to find out that his dad wasn't coming home for awhile.  They got a surprise yesterday.  They were told he would have to stay 3 weeks but yesterday they told him that he could go home after only being here for 2 weeks.

It amazes me what everyone up on this floor has to go through and the inner strength that it takes to get through it.  I am so proud of Alyssa and how she has  pushed through everything that has been thrown at her.  I love her with all my heart and I am very proud to say that I am her mother.

We got to go outside today

Alyssa and I didn't sleep very well last night.  I think that we were so relieved to have the transplant done that we couldn't turn our brains off.  Alyssa was a little down today.  She is so bored but I keep telling her that bored is good because she is not sick.  We went for our walk around the nurses station today and her nurse came running up to her with saline in her hand.  She told her that she doesn't have to be attached to her iv pole anymore and do you want it unattached right now.  Alyssa was so excited.  We then saw the doctor and I asked her if we could go outside.  The doctor said lets go into my office to get some privacy.  She told Alyssa that she is doing very well.  Her numbers are dropping but she is not at zero yet.  They will start the nupegen shots (those are the ones she gets to boost her white blood cells) on day 6.  Today is day 1.  She is eating well, drinking good.  Then she told Alyssa the magic words, yes you can go outside.  I think Alyssa was going to do a dance right then. 

We went for a walk outside and she said that she was hungry after a little while so we came back in and had some lunch.  She then promptly threw up.  They gave her medicine for that and then she wanted to go back outside.  I told her lets wait and see how the medicine works.  She then went to sleep for awhile.  After she woke up we went for a drive to a park and just sat on a bench in the sunshine.  We had to go back to hospital to get some more medicine.  She was very depressed to go back to the hospital.

When Kirk came she wanted to get  a movie so she went and asked if she could go with him to the video store.  They said sure.  She was so excited. 

All in all it was a pretty good day. 

The transplant is COMPLETE

This calendar says Life is all about how you handle Plan B.

She woke up today to her "NEW" birthday.  When you get your transplant they call it your new birthday.  The nurse told her that she can now drag her birthday on for a week.  Kelsey brought up a cake last night to help her celebrate it.  She also made another cake for a PA that told her that it was his birthday also.  After awhile we will have a party with the nurses that are up on the floor. 

It was very interesting how they transplant her cells.  They first have to pre-medicate her so she won't get sick during the transplant.  They give her something in her iv that has sugar in it to make her go to the bathroom.  After all that they bring in a warmer to warm up her cells.  The stem cells arrive and they take them out of their container and warm them up.  The nurse then puts them in her iv just like a blood transfusion.  They put 3 bags in and they were about done in a hour with the whole process.

Before all this happened the nurse told her that they check her vitals every 5 minutes and she might have to oxygen.  Her eyes kept getting bigger and bigger and she started to get more nervous.  She told me that she was terrified that she would have to go back to ICU.  The nurse came in and talked to her and told her that she has been doing this for 14 years and she has never seen anyone go to ICU.  She did wonderful all through it and her oxygen level never dropped below 100%.

I have included some pictures of the process and also a Christmas present that she got in February.  I bought the calendar in October sometime not knowing what she was going to have to go through.  Also some pictures of Bryan's graduation.

I am so relieved that this day has finally come.  They say now her numbers will bottom out in the next few days and then we have to just wait for her numbers to come back up usually around day 10 or 12 from today.  Such a good day!

Bryan's Graduation ( I don't know how to flip the pictures so you will have to just turn your head)

Bryan and Kirk

Bryan & my Parents

Alyssa's new birthday cake.  Don't you love her hair!

This is how her stem cells came.

This is the warmer that they put the stem cells in before giving them to her.

Nurse Michelle giving her back her stem cells.

Much better day

Alyssa had no headache or vomiting all day long.  They only thing that she did most of the day is sleep.  I think it is the after effects of all of the medicine.  I guess she really knows what the meaning of a rest day is!  Tomorrow is her transplant.  We are about half way there!

LAST CHEMO JUST CAME DOWN

They just took down her last chemo bag.  If all goes well she will never have to chemo again.  This chemo has been very rough for her.  After I posted yesterday she started to throw up around 6:30 she then threw up around 3:30 am.  Her headache is what is giving her the most problem right now.  She hasn't been able to eat much today.  They have given her some different medicine for the pain and have scheduled nausea medicine instead of her requesting it.  I hope that later on today she can eat something.  She is really concerned of being put on the nutrition bag.  I feel so sorry for her and I can't do anything to help her.  I am sure  tomorrow will be a better day without chemo. 

One more to go

Alyssa is feeling really good.  She has not had any nausea for 2 days.  They are going to switch her meds back to pills.  They changed all they could on Sunday to iv when she was throwing up so much.  They started her second round of chemo today.  It is quite the process to say the least.  They have to give her latex, potassium and saline iv about a hour before the chemo.  They want the kidneys to start working more than usual because the chemo she is getting attaches to the kidneys and causes all sort of problems.  After the latex, potassium & saline mix they give her another iv that coats the kidneys so the chemo won't attach to it.  After that the chemo runs through her around 4-5 hours.  Her iv tree is quite full right now.  She is complaining of a slight headache but other than she is doing good.  She has only ONE more round of chemo tomorrow.  Hopefully that will be the last chemo FOREVER! 


I am very grateful that I or anyone in my family have not been sick through all of this.  I know that the Lord has blessed us in this matter.  I can't imagine what we would have done if anyone of us have gotten sick. 

You Go Alyssa

I can't believe what amazing daughter I have.  She had a horrible day yesterday and I could tell that she was getting discouraged.  She kept trying to eat something and she kept throwing it up.  After many tries of drugs I think that they finally found the combination that will work for her.  She ate chicken noodle soup and some sprite and kept them down.  After keeping it down she looked at me and said, "we can do this".  I can't believe the inner strength that she has.  She DOES NOT want the nutrition in the bag.  She slept really good, I am sure it was all the drugs pumped in her.  When we woke up this morning the sun was shining and her nurse came in and said that they wanted to take her to do her  last MRI.  She hoped out of bed and said lets get this done.  I about fell out of my chair.  She has hated the MRI's in the past and has had almost anxiety attacks over them.  I am waiting for her to come back and then we will try a real breakfast and see how that goes.  She had her last dose of the first round of chemo last night at midnight.  Today is a rest day.

The day just keeps getting worse

Well the day has just drugged on and on.  Alyssa can not keep anything down.  I asked her how she was doing and she said matter of factly to me, I feel like crap!   I told her you go girl.  We are trying to keep positive and hopefully this phase will pass quickly.  She has thrown up all day long and they have given her about every drug for nausea.  She will probably have to have nutrition in a bag tomorrow if things don't start looking up.  She is really dreading that!  I keep telling her that is better than having a feeding tube and she needs to have nutrition or we would be dealing with a whole lot of other issues.  Keep her in your prayers to help her get through this rough time.

It has started

Alyssa had a rough night last night.  She started throwing up around 2:30 a.m.  She has thrown up  3 times since that.  She is resting right now.  I hope she is doesn't get much worse than this right now.  She has 3 more doses of chemo and then she will get a break. 


Kirk and Bryan got back okay and Bryan is a college graduate.  Kirk said that it was good to see him in his cap and gown.  Thanks Mom and Dad for going to support Bryan.  Thanks everyone for the love and support.

7 dose and counting

Alyssa just got done with her 7th dose of chemo.  Only 9 more to go!  She has had no side effects of the chemo yet.  They keep telling her that she might get sick the longer she has the chemo in her system.  We are hoping that is not the case.  They give her the chemo every 6 hours starting at 6 am.  She is very bored right now.  She is totally different this round.  She is more aware of what is going on.  On Sunday at midnight she will be done with this round of chemo.  On Monday she will have a break and then get different chemo for 2 days and then have a break and get the stem cells on the 15th. 


Kirk is on his way up to Rexburg tomorrow to move Bryan home and watch his graduation.  He is getting his associates degree.  He his going to go to school somewhere in Utah but just doesn't know where yet.  I believe he wants to work on web pages.  I am very proud of him and I am so glad that he is understanding why I can't be there to support him.  Our house still hasn't been sold.  Many lookers but not the one yet. 

We are in the hospital

Well we arrived yesterday around 1:00 p.m.  her door was a revolving door for awhile with all that goes on with checking in.  She got settled and got her iv's started.  We had a pretty rough night.  We both forgot what it was like to be waken up all night.  If anyone wants to come and see us we are in E850.  Same rules apply as before, no plants or flowers.  If you are sick we would love to see you but you need to stay away until you are better.  No germs are allowed in this room.  Also the hospital has requested that no children are to be up here.

They started her first dose of chemo at 5:38 am.  They have to know the exact time that they gave it to her and the exact time that it finished.  After it finishes they have to take blood from her every 15 minutes throughout the day.  Every 6 hours she will get more chemo.  The reason that they have to be so exact with this first dose is because they have to see how her system is metabolizing the chemo.  After all the blood draws are done they fed ex the samples to Seattle.  They look at them then let the hospital know if they have to adjust the doses for the next  round of chemo.  It amazes me what needs to be done to get it done right.  I am so grateful for the good doctors and nurses that she has.  It gives me much comfort that they know what they are doing to get Alyssa better.

We have people looking at our house but no offers yet.  My patience is running out, I guess I need to have faith that it will sell when the time is right.  Sometimes the Lord's time frame is completely different than mine!

On Board to go to the Hospital

We went to the clinic today to have the conference telling us what to expect in the hospital.  Alyssa has to go to the clinic tomorrow to get a medicine that coats her mouth and esophagus.  They give this to her to help prevent mouth sores.  The chemo that they will be giving her sometimes gives you mouth sores.  On Wednesday she has to check into the hospital at 1:00.  She will be given a lot of fluids and pre chemo drugs.  On Thursday at 6:00 am she will be given her first dose of chemo.  They have to give this chemo 4 times a day until they have reached 16 doses.  She will then have a break for a day and then be given another chemo for 2 days, once a day.    Then a one day break and then her stem cells will be transplanted.  They are planning on doing the stem cells on the 15th.  If all goes well they are predicting that she will get out of the hospital on the 29th of April.  She is still holding on to getting out of the hospital by her birthday on the 21st but that is probably not likely.  We will have to have a big party for her in the hospital and when she gets out. 

She is kind of nervous but she knows that it can't be any worse than the last time she was in the hospital.  At least she knows what to expect this time.  Please keep her in your prayers so all will go well and that we can sell our house.

Yippee!!!!!!!

Alyssa and I went up to the clinic at 7:30 a.m.  She got her blood drawn and then we had to wait for her counts from her blood.  We then had to wait for 45 minutes to have the PA come in a talk to us.  After the PA gave the okay to collect her stem cells, we went to the collection room and started that process.

They hooked her up to a machine that took out her blood and separated her stem cells and collected them in a iv bag.   Her blood then went into another tube back to her body.  They explained it to me that it is similar to giving platelets.  They told her that her number on Monday was 2.6 and went up to 6.6.  They took out more than what they needed in hopes that they could collect enough cells today so she wouldn't have to come in again for collection.  It was a hard day for her.  She had to lay very still from 9:00 am to 4:00 pm.  She was getting very frustrated after about 2 hours.  The nurse gave her some medicine to relax her and she fell asleep.  She was really hoping that she didn't have to do this again.

We just got a call from the clinic and they told us that we have very good news.  They needed to collect 5-10 million cells.  They collected 11.9 enough for 2 transplants!  This means that she doesn't have collect again.  The plan now is that they send some of her stem cells to get tested one more time to make sure that there is no more leukemia.  This test takes a week to get back.  We will then go in and talk to the doctors and be admitted to the hospital.  We think that she will get admitted next Wednesday.

The nurse explained it to us about the transplant that made sense to us.  Alyssa has APL and that means that her leukemia is in the tissue not in the bone marrow.    Since the bone marrow is not damaged from the leukemia that is why she can donate her stem cells  back to herself without the worry of the leukemia coming back.

All in all we started off with a rough day but had a very good ending.  Still trying to sell our house.  If anyone wants to buy it just let us know!

We are starting next phase

We went and talked to the doctor on Thursday and they said that we need to start the next phase.  Alyssa has to go up to hospital Friday-Monday and get a shot to boost her white blood cells.  On Monday after getting the shot they will take a blood sample and see if it is high enough to start the collection process of her stem cells.  If the number is high enough we will go in on Tuesday and start the collection.  They use 2 of her central lines and pull blood out of her and  get the stem cells and they but the blood back into her.  This usually takes around 4 hours.  After they collect it they send it to the lab.  They have to collect 500 million cells.  If they get enough the first collection then we are done, if they don't get enough cells then we keep going every day until they get enough.   They have to send the blood to be tested to make sure there are no leukemia cells in her blood.  The blood test takes a week to get the results.  When the test results come back negative then we start the next process of being admitted to the hospital and getting chemo and the transplant. 

With the shot that they give her they told her she would have a headache and some bone ache.  She said that she had a slight headache today.  We are pretty excited to move on to this next phase.  We are just hoping that our house sells fast so we can finally get settled in our own home.

It's Negative!

Sorry for the lack of posting lately.  We have been a little busy these last few days.  We moved into Kirk's mom's basement and cleaned out the townhome.  Kirk came last night so we are finally together.  We will have to move our stuff from the truck to a storage unit when the truck gets here.  We think that the truck will be here sometime later in the week.  If anyone feels like helping move the contents out of the truck to a storage unit just let us know.  We hope that our house sells fast so we can finally feel some sense of normalcy. 

Now for the really good news.  We have been waiting for the results of the bone marrow biopsy.  The hospital called this morning telling us that it is negative.  What that means is that she can get the transplant from her not from the donor.  It is such a releif to know that she won't have so many complications after the transplant. 

She has to go in this week to have 2 tests before they can start the process of the transplant.  From what we know now she will have to have a shot for 3 days to boost her white blood cells.  After the shot she will go into the clinic everyday to collect her blood.  This has changed since the last time I told you about the transplant.  There are two ways to get the bone marrow, the first way is taking the marrow like a bone marrow biopsy where they put a huge needle in her back and drill it into the bone and suction out the marrow.  The second way is taking her blood out of her through her central line.  It is like a transfusion but reverse.  Apparently the reason that it has been changed is because all of the literature out there says that taking her blood through the central line has better results than the bone marrow biopsy source.  Alyssa is more excited about doing it through her central line than the biopsy way.  She will just have to go up to the clinic for 3 or 4 days and lay in a bed for 3 hours while they draw her blood and run it through a spinning machine. 

We have to go see the doctor on Thursday for a meeting to explain more about what we are doing next.  After that meeting I will let you know more.  We are so excited that we are finally together as a family and that the test came out negative!

No more arsenic for now

We got a phone call from the clinic today telling us that Alyssa didn't have to get the last three doses of arsenic.  We need to wait for the results to come back from the biopsy and then we will know what the next  steps will be.  Alyssa is so excited to not have to get arsenic for awhile.  Keep you posted when we get the results of the biopsy.

Kirk is finally coming here.  He is packing the truck on Friday and Saturday and then his brother, Kevin and him are driving home.  Kevin flew out on Thursday to help Kirk.  Thanks Kevin, I am so glad that Kirk doesn't have to drive that long ride all by himself

Very Frustrated!

The last time Alyssa has had arsenic was Thursday.  Everyday since Thursday her QTC numbers have been too high.  We think that Friday was calculated wrong.  When she doesn't get it for the day her number has go below 460 and it has never gone below that.  Alyssa was upset on Friday but more on Monday. 


When we went in today the number was still too high.  She was having her bone marrow biopsy today so we talked to the doctor.  We asked if it is really beneficial to have the last 3 doses.  Right now it has been 6 days since she has had any.  The doctor said that she was fully prepared to tell us that we needed to complete all the doses.  After talking to us she doesn't know what to do.  There is a tumor board meeting tomorrow and they are going to discuss Alyssa's case.  After all the doctors talk it out they are going to call us and let us know what the plan is.  We told them that we are going to do what they want us to do but I was just concerned for Alyssa's mental state. 

Why does this treatment have to be different all the time??????   I guess we will see tomorrow what the next step is.  The biopsy results will take a week to get back.  They are planning on the harvesting of the bone marrow on March 24th if the results are negative from the bone marrow.

Day 25 down

I wrote about day 24 but it must have gotten lost in cyberspace.  Our friends Mike and Lisa came back down from Idaho for her next set of treatments and they were giving me a hard time for not posting.  I guess I figure there is nothing new so why post.  Sorry for the delay in postings!

Anyway Alyssa has gotten 25 doses.  We have decided not to go in on the weekend because it is a very frustrating time.  The cardiologists either read the ekg wrong or we have to wait for 3 hours just for them to read it.  If all goes well she will be done with arsenic FOREVER on Tuesday.  After she gets that done she will have the bone marrow biopsy and then we go from there.  It takes a week for the results from the biopsy.  She had to go to the doctor and get a physical and the dentist for a checkup before her transplant.  We found a doctor and a dentist that our insurance would pay for and went to them this week.

Kelsey got here yesterday.  She decided she wanted to come a little earlier than Kirk.  Her Uncle Kevin and Aunt Debbie were in Omaha picking up their son.  He served in the Omaha Mission for our church.  Kelsey drove out with them.  They ran into bad weather so they stayed the night in Evanston.  She is looking for a job and wants to go to school in the fall.  If you know of any jobs out there please let us know.

Kirk's last day in the office is March 18th.  He is busy getting the house packed up with the help of some sweet ladies from our church.  He is also painting some rooms in the house because the feedback of the people looking at the house have said they don't like the paint.  We are hoping that this will speed the selling of our house.  Please keep us in your prayers that this house can sell fast so we can begin a somewhat normal life again.

My dear friend, Cheri, sent me the news story below.  I wanted to share it with you.  It is about a blind quilter.  As you all know I love to quilt.  This lady's story is very good.  I hope that it will inspire you to be a better person. 

http://www.youtube.com/watch?v=7lfaSmDxVZQ

Thanks again for everyone's concern for Alyssa and my family.  Words could never express my gratitude.

WOW

Alyssa didn't have arsenic Saturday and Sunday.  Her numbers were too high.  When we got in there today they did the normal things.  Her numbers came in low enough to have arsenic.  Come to find out she could have had it over the weekend but the cardiologist didn't figure the EKG right.  We were glad that she didn't loose another day today.


When we talked to the doctor today about the transplant all I could think is WOW.  It was a lot of information packed into a hour.  I am so glad that we were a little prepared for it.  This the low down of the next step in this process.

She needs to finish her 30 doses of arsenic (today was day 18).  After the 30 doses she will have to have a bone marrow biopsy.  We wait a week to see if comes out negative.  If it does then we start the bone marrow harvesting.  They are pretty sure that the test will come out negative because she has been responding so well to the arsenic.

The bone marrow harvesting consists of her going to the hospital and they put her under.  When she is asleep they will do the harvest.  They will do it the same way as bone marrow biopsy's.  This is when she lays on her back and they insert a very large needle in her back and they draw her marrow out in a syringe.  It looks very painful.  The difference in the harvest is that a doctor and a pa are both extracting marrow at the same time.  She will have 4 more holes in her back.  When they do a biopsy they are getting around a teaspoon of marrow.  When they do a harvest they are getting a liter of marrow.  In the same holes they are going in around 200 times to get their liter of marrow.    They have to have 2 to 5 million stem cells for a good harvest.  If her red blood count is high enough they will take out some of her blood and then transfuse it back into her when the harvest is complete.  They will then freeze her marrow so they can transfuse it back into her when they are ready.

After the harvest she will come home for a couple of days to recover from the trauma of the harvest.  She will be then be remitted to the hospital and have high does chemo to kill everything in her body.  They said that this usually takes around a week.  After the chemo all of her numbers will drop to zero.  This is when she has no immunity.  After the week of chemo they will transfuse her marrow back into her.  Then we wait in the hospital 3 to 4 weeks to get her numbers back up.  When her numbers are up then she will be released from the hospital.

After being release from the hospital we will have to go to the clinic once a week for a little while to check to make sure all is well.  After they determine all is well we will have to go up to the clinic once a week.  They are saying that probably around June or July she won't have to wear her mask anymore. 

She is a little nervous but she is so ready to have this done.  The nurses and I have told her a little what to expect all along so she wasn't so shocked today as she could have been. 

We have hit the wall

We went up to the clinic today and her QTC number was too high.  She went 17 days without a break.  We will go up tomorrow to see what the numbers are.  Now that she hasn't had arsenic today her number tomorrow has to below 460.  We don't think that will happen.  We are going to go through some museums around Salt Lake with my parents today.  We rented some movies in case we don't get arsenic tomorrow.  On Monday we talk to the Doctor about the transplant.  I will take notes and keep everyone posted to the next fun we get to have. 

Just when we think we have figured this out things change

Well Alyssa has had 13 doses in a row.  It has become a joke now between us.  When she said that she didn't want a break she really thought that she would only do around 8 times and then her QTC number would be to high and she would get a break.  Last time every day her QTC number would go up everyday.  Well this time around her numbers were getting pretty high.  (When they do the ekg they measure her OTC wave.  If it is over 500 she can't get arsenic.  When it is over 500 they have to have the cardiologist measure it by hand.)  We thought for sure that when the cardiologist looked at the number would be too high but they have always gotten it below 500.  This weekend her numbers went down!   We were very shocked.  Also on Sunday her number was so low that the cardiologist didn't even have to look at it.  We like it when the cardiologist doesn't have to look at because that speeds up the process by usually 1 hour. 

Now Alyssa is wondering if  she should have never said that she would wait for her body to tell us that she needed a break!  Now we are wondering how long she will go without a break.  Well with that being said all in all we are doing fine.  We went to DI ( a store like goodwill) today and came home with 2 bags of books for her.  She loves to read and when we don't have access to a library we figured that was the next best thing. 

We have met so many wonderful people on the leukemia floor.  We just learned that a young man was just finishing a mission for our church and he had 2 weeks left after being gone for 2 years.   He  found out that he had leukemia.  He flew here from his mission with the mission doctor with him.  His family met him here from Colorado.  Also another couple had just had their first baby and then 2 days later the husband found out he had leukemia.  Another couple was in the same boat as Alyssa.  He was suppose to graduate from BYU-Idaho in April and his wife was 2 months pregnant and they found out he had leukemia.  As I have met all these wonderful people I realize that everyone has a story.  What we do with our story is up to us.  We can dwell on the negative or we can find the positive.  I have learned a lot about myself and my family.  I have realized what is important to me.  I have learned that I have a awesome daughter.  I can't believe how strong she is and what a wonderful support my family is to me. There have been many blessings that have come from this.   I have realized that the Lord will not give me more than I can handle.  I never thought that I could have done the things that I have done since November.  When Alyssa was in the ICU the nurses were always coming up to me and wondering why I was so calm when my world was falling apart around me.  I know that I would have not been able to do all of these things without the power of the priesthood and the support of my family.

Give your love ones a hug tonight and tell them that you love them.  I miss Kirk, Kelsey and Bryan and I love them with all my heart.  I am glad that they are mine and I can be Bryan, Alyssa and Kesley's mom. 

Breaking Records

Today is the 10th day in a row for arsenic.  Alyssa said that the rate she is going she will go for 20 days without a break.  She doesn't know if she should have ever said that she wanted to go until her body told her enough is enough.  It is really getting boring in the clinic waiting for hours at a time every day.  I am more tired than when I worked 10 hour days.

 After clinic today Alyssa and I are going to look at more houses in Layton.  Thankfully we don't have to be out of the townhome until April 1st.  Hopefully, Kirk and Kelsey will be out here sometime in March.  Kirk is selling our infiniti today so we will be down to one car.  It has been a long time since we have had only one car.  Thank goodness that we have Alyssa's car!  I am officially unemployed.  My FMLA ran out on the 13th of this month.  I couldn't give work my full attention right now.  Hopefully when things calm down I will be able to work remotely like Kirk.  We will have to wait and see. 


I think that is all that is going on in our lives.  Thanks for everyone's concern and love towards our family.

Saw the Doctor and PA today

Alyssa had her 7th round of arsenic today.  When they first told us that she needed to have 30 more doses of arsenic they told her that the schedule would be 5 days on 2 days off.  When we went in on Saturday they told us that they wanted to see 7 days in a row before a break.  When we went in on Monday they said that they would give us a break on the weekend.  When the doctor and the pa came in today Alyssa told them that she was thinking about it and asked if she could just have it when her body would let her.  She knows that her body will tell us when she can't have it.  Alyssa's thinking is that she would rather get these doses done as fast as we can so we can get on to the next phase of the therapy.  Her underlying reason is that she doesn't want to be in the hospital on her birthday.

The doctor felt that was okay.   She went 8 days in  a row on the last phase.  We will see if she beats her own record.  She is feeling good.  She gets tired pretty easy.  She is a pretty good navigator.  We go and look at houses and she maps them out for me and we go looking around neighborhoods.  We have found some pretty neat houses.  We just have not found OUR house yet.

more news

We came into the clinic today and they told us that they want to get a whole week of arsenic before a break.  They are worried about missing too many times like the beginning of the first session.  Alyssa really doesn't want to be in the hospital on her birthday which is April 21st.  The faster we can get the arsenic in the better.  They also told us that we need to get 30 doses instead of 20. 

 I also talked to someone else about her bone marrow biopsy and they told me that they looked at 1 million cells and her leukemia cells were .02 so they are very confident that when this next dose of arsenic gets done they will be able to do the transplant from her.  We will know more on the 28th of this month when we have a consultation with the doctor about her transplant.  

Kirk told me this morning that he is putting the house on the market on Wednesday.  Hopefully the house will sell fast so he can finally move out here and we can buy another house. 

Day 2

Nothing new to report here except that she has had 2 doses of the arsenic.  I probably won't update this everyday unless something new happens.  Our days consist of going to the clinic, waiting and waiting to see if she is going to get treatment.  Waiting some more for the arsenic.  Waiting some more to have the arsenic get in her.   Coming home fixing dinner and then going to bed.

Second round of Arsenic

Well since the last time I posted Alyssa had her 30th dose of arsenic and had five days off.  Kirk, Kelsey & Bryan came for the weekend and we finally got to celebrate Christmas.  It was so fun to have the whole family together again.  We played games together, watched movies, cooked and just hung out with each other.  Bryan went home on Sunday and Kirk and Kelsey went back today.  Thanks Jeff for the plane tickets!

We went up to the clinic to hear what the next step is.  They told Alyssa that she is in REMISSION!  We were thrilled by that but wanted to know more.  They said that they need to do another round of arsenic hopefully 20 doses.  If all goes well then she can do it for 5 days and 2 days off.  If she skips any doses then we have to give the arsenic when her body will allow.  They wanted to start up again today but I told them by the time that got it all ready we would be leaving the hospital at 9:00 tonight.  They said that we could start tomorrow.


After the 20 doses they will do another bone marrow biopsy and see what is going on.  From the looks of her remission they think that she is on the right road so she can get the transplant from her own bone marrow.  Now that is what we have being wanting to hear.  The doctor was very pleased how she responded to arsenic. 

Alyssa seems very upbeat about this next round of arsenic.  I am having a harder time with it.  I think that I just want my husband here with me.  I had a hard time saying goodbye to him today.  Tomorrow will be a better day.  I am just glad that we got some good news today.

Bone Marrow Biopsy

Well everything has been about the same around here for the past few days.  We came up to the clinic today and the PA came in and asked if she wanted to have her biopsy today.  If she got arsenic today it would be the 29th day.  Alyssa told the PA that it would be fine to do the biopsy.   The reason that they wanted to do it today is because they didn't want to have the biopsy done over the weekend.  They told us that it will take a week to get the results.


After the biopsy she got her arsenic.  We have to come up to the clinic tomorrow to get the 30th dose.  If she gets the dose then she doesn't have to come back until next Tuesday.  This is working out so nicely because Kirk, Kelsey and Bryan are coming this weekend to finally celebrate Christmas. 

 They told us that if the biopsy comes back good then they can start her harvesting of bone marrow and get on to the transplant.  If it doesn't come back good then they will make the decision to have more arsenic and/or the donor transplant.  We are hoping and praying for the harvesting option. 

We are quite excited to have a few days off and spend some time with the family.  Please keep Alyssa in your prayers that the biopsy will come back favorably.  Thanks for all the support.

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.

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. 

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.

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. 

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.  

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. 

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.

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.

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.

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!

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. 

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.

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.

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. 

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. 

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. 

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