Monday Feb 27th Update - Home again

Sarah continued to be without fevers, so we were able to go home today.  Her urine test did come up positive, but the doctors thing that it was due to contamination because of the results, rather than an actually infection.  Something that we need to watch.  

Jess and Gus came to pick us up from the hospital and got there before we were ready to go.  Gus didn't want to be left in one place, so he had to be walked around in the hospital.  Sarah was glad to be home.  Her ANC is dropping, so we hope that she will get rid of this sickness before it bottoms out.  

Thanks for all the love and support.  We feel it and are very grateful to all of you.

Sunday Feb 26th update - Still in the Hospital

Another Sunday at the hospital.  Sarah did fairly well today.  Her fever went up once during the night and they needed some Tylenol to bring it back down.  The doctor's this morning did seem impressed on how high her fever was.  We have seen it that high before, so it wasn't as worrying for us.  The doctor's wanted to watch Sarah until Monday morning.  They wanted to give the blood tests a while longer to see if anything grew and wanted to make sure she didn't get another fever.  If the tests are still negative and she doesn't have a fever overnight, we should be released in the morning.

Our home teachers came to visit this afternoon.  Sarah loved to see them and had them give her a blessing.  They have done a good job of helping out.  My wife was impressed that so many people at church knew about Sarah being admitted to the hospital, until she was reminded of the blog.  It is a great way to get information out.

This evening Sarah was in a very silly mood.  She wanted to tickle and be tickled.  I view that has her being a little over tired.  She did manage to get her IV tube under her IV pole.  When we picked her up to get back in bed, she got a good yank on her tube which seemed to have pulled out the port needle.  The IV nurse came and pulled the port and Sarah had to be re-accessed.  This all happened after her bed time, so shortly after she was de-accessed, she fell asleep and had to be waken to re-access her port after the LMX cream numbed the skin up.

We are grateful for all those who help and provide support for us.  We are grateful for friends who are willing to give rides and watch kids during these times.  We love you all.

Feb 25 - In the Hospital

Saturday started as a decent day.  Lilly and I went to help clean the church in the morning.  I needed to get the girls out of the house for the afternoon, so I took them to Red Robin for lunch and then to the Pacific Science Center after that.  The girls had fun, but Sarah didn't last much longer than a hour.  I am sure that it is the same way that her auntie Shannon feels after some walking.  We got home and Sarah took a nap, while Lilly skyped with her aunties.  

We woke up Sarah for dinner, and she felt hot.  Her temperature was 103.6 F.  We called the oncall and got cream on her port site, so she was ready to go.  We packed her some food and headed to the ED.  At the ED, she got some labs drawn and got some fluid.  They gave her some anti-biotics, as well.  However, her heart-rate continued to stay high.  The decided to admit her over night to see how she was doing.  One of the tests has already come back as positive for the Rhino virus.  This virus causes the common cold.

We are grateful for the support that we have received.  I am personally grateful for all those who help so that my wife doesn't have to worry about so many things.  Our family is happier because of it.  We love you all and may the Lord bless you.

Feb 23rd - Quick update

I know that we are starting to get in a routine when I haven't updated the blog in a while.  It has been nice, not being inpatient for a little while.  I know Sarah likes to be home more.  Lilly is home from school this week, so Jess is having to keep everybody entertained.  She is doing a good job, because everyone is happy when I get home from work.  I wanted to post a couple of pictures that I took before I left for work this morning.

Gus and His smile

Sarah and her Lady bug

We are grateful for all those who have helped and are praying for us.  We love you.

Sunday Feb 19 update

Sarah's appointment on Friday showed that she was ready to move to the next round of treatment.  So she got a back poke as well as Vincristine, and Doxorubician.  The Doxorubician is the drug that makes her hair fallout.  If you remember back to her first month, this round is almost the same as that one.  She doesn't get as many back pokes, however.  Sarah is a little upset that she will lose her hair again, especially because it is just starting to come back.  At least we know that her hair will come back in.

One of the other drugs that they started her on is the dexamethasone.  That is the steroid that causes the mood shifts and causes her to want to eat constantly.  We have seen all of the above the 3 days that she has been on it.  We are glad that we only have a week on it at a time rather than a two week stretch.  She eats every hour or two.  We had to pack snacks that we feed her during primary to keep her happy.  She will get ornery and very adamant about what ever she wants.  It is tough but we have to remember that it is the drug causing her issues right now.

Saturday was a quiet day at home.  We almost feel like we are getting back into a routine.  I am sure it isn't long before it gets disrupted.  Sunday was a good day.  We all went to church.  I had to spend most of Sunday school and half of priesthood time sitting with her in primary.  She was hungry and didn't want to sit still.  We made it through church without a major breakdown.

Two funny things to add.  First, during Sarah's appointment on Friday, she was in her procedure room to get her back poke.  She tells the nurses and doctors "One day I will wake up and be a doctor."  If only it were that easy.  The second thing comes from Lilly.  During Sacrament meeting, after the first speaker, she jumps and says "Dad, I want to go up there."  I had to explain to her that it wasn't fast and testimony meeting today.  She loves to share her testimony with others.

Thank you for all the love and support we receive.  I was looking back over the last few months today and realized that we have been really blessed.  We feel the thoughts and prayers that are expressed on our behalf and pray for the Lord to bless each of you.

Feb 16th Update

It has been a pretty quiet week this week.  I have had a productive week at work.  Sarah has enjoyed being home and having an easy week.  Lilly and Gus have been happy to have more of a constant schedule and trying to get back into routine.

Sarah has an appointment tomorrow (Friday) morning and will be starting the next round of treatment.  We are happy to continue, because the sooner we start the sooner we get through it.  This next month is pretty much like the first month.  The main difference is that Sarah is starting this healthy and with a high ANC.  Hopefully that will mean that she handles it better.

Thanks for all the love and support.  We still have a long way to go and we are grateful that people are still willing to lend a hand and serve us.

Feb 12th update

Sarah's appointment on Saturday morning went well.  Her ANC was above 200, so she was taken off of the antibiotics.  This makes things easier of everybody.  Sarah doesn't like to take one of the anti-biotics that she was one.

I decided in the morning to take the kids out of the house to give Jess a break.  Sarah decided that she wanted to stay home, but I took Lilly and Gus in the afternoon and we went fro a drive.  We ended up going up to the Edmonds ferry and took a ride over to Kingston.  We visited a few stores on that side of the sound before catching the next ferry back.  It was fun.  Lilly kept on saying that it was her dream to go on the ferry and she always wanted to, and now she will always remember the trip.  We need to do it when it is summer time, so we can she more of the shops.

Lilly and Gus on the ferry

Lilly had a small fever on Sunday morning, so she ended up not going to Church.  Sarah and her played most of the day together.  They have fun together.

I have one other picture to post.  This is of Lilly reading to Gus his books.  He loves to read and often will pull his box of books and look at them. 

Lilly nad Gus

Feb 10 update

We are back home from the hospital.  Sarah didn't clear the 200 ANC mark (it was 174) so she came home with some oral antibiotics.  She was happy to get out of the hospital.  Lilly stayed home from school due to a fever last night, so her and Sarah talked in the car the whole way home.  They are the best of friends most of the time.

Thank you for all the support that you have given.  We love the notes of encouragement as well as those who mention that they are thinking of us.

Feb 9th update

Sarah did one of the things that prevented her from going home today.  Her ANC dropped below 200.  The docs wanted to wait the 48 hours to see if anything came back from the blood tests.  So long as she doesn't get a fever and the blood cultures are still negative we are leaving Friday morning.  They have us scheduled for a early discharge tomorrow.  Her labs will determine if we go home on anti-biotics or not.  If her ANC is above 200 she doesn't need anti-biotics.

Sarah has been good today.  She has been mostly happy.  During rounds she sneaks out of her room to perform for the circle of doctors/med students right outside her door.  The doctors tell her that she shouldn't be out of the room due to her isolation.  She just smiles.

Sarah wanted Little Caesar's Crazy Bread, so mom brought them for lunch.  She chowed half of the bag herself.  Luckily, we had fed her the vegetables and fruit before mom brought the crazy bread.

Sarah chowing the crazy bread

We did have one issue today.  Sarah's port stopped giving or taking fluid.  It looked like the port need shifted and wasn't in right any more.  So she had to be de-accessed and re-accessed.  The nice thing about that was that we were able to give her a bath without her being accessed.  It is much easier when we don't have to worry about he port needle.

We are grateful for all the love and support.

Hospital stay again

So I had the quick post this morning that let people know that the we ended up in the ED in the middle of the night and were admitted in the early morning to the hospital.  When we arrived in Sarah's room, the bed was ready for Sarah, and the chair/bed was all setup for me.  It was nice to not have to worry about trying to setup the bed in the early morning when I was tired.  The nurses here are awesome.

Sarah has been good throughout the day.  She hasn't had any fevers and she seems to be feeling fine.  She hasn't wanted anyone to leave her alone.  Anytime, I stepped out of the room for a couple of seconds, she would start to whine.  Hopefully, that was a product of her being tired and we won't have that issue tomorrow.  She ate well today, but didn't drink very much until we got her a root beer float for dessert after dinner.  The doctors think that they might release us tomorrow if she doesn't have any more fevers and there is no growths in the blood tests.

Thanks for all the support that we are given.  I am grateful, that Jess is able to call be one a whim for rides, or to take Lilly to school.  She never has to call more than a couple of numbers before she finds someone willing and able to help.  We have had so many people offer to help.  We are constantly amazed at the generosity of others.  Thank you so much.

Quick Update

Since my post saying that this started out as a normal week went up, I figured I should post a quick update.  Sarah had a fever in the night that sent us to the ED.  Her ANC is 367, which means that she is admitted for a few days.  Life never stays calm for long.

Sarah catch some sleep in the ED

Feb 7th Update

Well this week has started out mostly normal.  We have needed it.  Maybe we can get back into some sort of semblance of a routine.  Everything is going well for us.  Sarah is doing good and loves her braces on her legs, now that we have shoes for her.  We bought them shortly before her last visit to the hospital.

Lilly still loves school.  I had a talk with her on Monday morning because she wasn't ready for school when it was time to leave.  I told her the benefits to getting ready before we play or watch TV.  Well, this morning she was eating breakfast first and got ready before she sat on the couch to watch some TV with Sarah.  Hopefully, this becomes a routine and not a one time show.

The other day, I realized that we have passed the 6 month mark.  It has been quite the ride.  I am grateful for all the support that has been given to our family.  It has been a stressful time.  It is tough sometimes, since it seems like this will just continue, but we know that the Lord is mindful of us and it watching over our lives.  He has blessed us immensely.  One of those blessings is all of you who give us words of encouragement or pray on our behalf.  We are extremely grateful for all that is done for us, seen and unseen.  We hope the Lord will bless you for your sacrifice.

Sunday, Feb 5th update

Sarah had a lab visit today at 10:30.  Since church starts at 9:00, we had to figure what we were going to do with one car.  Sometimes it makes me wish that we hadn't gotten rid of our second car, but then I remember what we have saved by not having it.  We ended up all going to church for Sacrament meeting.  Sarah and I dropped Mom and Gus off at home on our way to the clinic.  Lilly wanted to stay for primary, so we worked it out so that a friend would give her a ride home after church.

Sarah's visit went great.  Everyone complimented her on her beautiful dress.  Her numbers were great.  Platelets were at 170, Hematocrit was 28, and her ANC was 1318.  It was a nice short visit and we were able to make it home about the same time as Lilly.

Gus is getting to be a handful.  He loves to run around the house organizing stuff.  He pull out clean or dirty clothes and go and puts them in drawers.  When the dishwasher is clean, he pulls out the silverware and either sets the table or throws it into drawers.  He also has a new game.  We have a wood puzzle that he puts upside down on the floor.  Then he stands on it like a baseball base.  We say 1...2...3 and then he runs off and then goes and gets back on.  He is funny.  Jess hopes this isn't a precursor to him being a baseball star, since that is her least favorite sport.

Thanks for all the love and support.  Both Lilly and Sarah bore their testimonies today in church.  You can tell that the feel the love that comes from our ward.  We are grateful for all that gets done for us.  We wish we could repay each of you and we hope that the Lord will do it in our place.

Feb 4th update

Sarah has gotten a lot better of the last few days.  We are still having to give her the rescue inhaler and the nebulizer treatment, but it isn't near as often.  She also is no longer spiking fevers or needing pain or nausea medicine.  She is also eating really well.  We think that she might be on a growth spurt and that is part of the reason that she has her appetite.

We were able to go as a family to the park.  Gus didn't like the grass or the swings or the slides.  He was content to sit in the stroller.  How did I end up with a kid who is afraid of the outdoors?  Hopefully it is short-lived and he is out running with the other kids.

Gus not happy with the swings

Lilly learning to pump her legs

Sarah with a smile

Sarah has an appointment on Sunday to check her blood levels.  She is dropping, as expected, and we need to make sure that she doesn't drop too much.  One of the ways that we know that she is low, is that she gets tired sooner.  She fell asleep during a nebulizer treatment the last two nights.  It makes her breathe better, which I am sure helps her to relax.

We are grateful for all the love and support that we continue to receive.

Feb 1st Update

The 1st was a long day.  I was up in the middle of the night with Sarah.  She had spike a high fever and she needed someone to be with her.  We had to get out a washcloth and try to keep her head cool.  At least she doesn't have much hair to stand in the way of the water.  She has spike a fever a couple of other times today.  My mother left in the early afternoon and I drove her down to the airport.  When I got back, I picked up Lilly from school and brought her home.  Sarah wasn't doing so good.  She was having trouble breathing.  We had given her the rescue inhaler for he asthma but it wasn't helping very much.  You could tell that she didn't feel very good.  We made a phone call to the clinic and I took her in.  On arrival, they got us in and started her on a nebulizer treatment.  They also gave her some pain medicine and took some labs.  She started to perk up after the nebulizer and I got her to eat some of a root beer float.  She was feeling good but the time we left the clinic, and she even ate a little bit of dinner when we got home.  By bed time, her fever had started to come back but wasn't near as bad as it had been.  We hope that she is doing better tomorrow and we don't have any more fevers.

On a lighter note.  My sister Shannon sent Lilly some CDs with music that she introduced to her when we were down in Utah over the holidays.  Lilly has gotten into the music and tries to sing along.  I recorded a short clip of her singing.  I hope you like it.

Thanks for all the love and support that we receive.  It helps to helps us to get through many of the tough days.  We are very grateful for the prayers and love that we receive.

Jan 31st Update

Tuesday was a rough day.  Sarah started off the day not wanting to eat or drink.  My mother was with her in the hospital.  She hadn't had a fever since around midnight.  The doctors wanted to take some tests and make sure she was eating and drinking before they sent her home.  My mother got her eating and drinking and she was able to come home.  Jess picked them up after a dentist appointment in the early afternoon and they all picked up Lilly on the way home.

Around 5:30, Sarah's fever returned.  After a call to the hemoc oncall, Sarah and I were headed back to the hospital but to the ED this time.  They drew some blood and took x-rays of her chest.  The blood was sent for cultures, but her numbers were good and the x-rays were good.  One of the tests that Sarah had done before leaving the hospital the first time was a nasal swab.  The doctors in the ED let us know that Sarah was positive for para-influenza.  This virus manifests itself like a common cold.  It was what was causing Sarah's fevers and her coughing.  They gave her some Tylenol for her fever and sent us home.  We even got approval from the hemoc nurses to use Tylenol if she gets another fever in the next 24 hours.  That means we were able to give her Tylenol when her fever spiked again shortly before Jess and I went to bed.

My mother is leaving tomorrow.  She has been a big help and we are grateful she was here.  We are grateful for all those who are praying and support us as well.  We love you all.