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.