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.