Jan 30th Update

So I have bad news and good news today.  The good news is that Sarah's methotrexate levels were 0.07.  That means she cleared all the chemo and could have gone home.  The bad news.  She has had a few fevers overnight and through out the day, as well as some coughing and a sore throat.  The doctors want to keep her over night for observation.  We agree that is best, since if she has a fever we would be at the ER anyways.

My mother took another turn at the hospital tonight.  Sarah likes grandma there because she plays a lot with her.  Grandma likes it too.  It is a great help but makes us feel a little weird only having to deal with two kids.

Sarah slept most of the morning and didn't eat until lunchtime.  She has eaten and drinking the later half of the day.  They did turn down her fluid levels so she wasn't getting as much into her system.  Her favorite thing to have this time in the hospital has been root beer floats.  I think she has had 4-5 of them over the past few days.  Whatever it takes.

Thanks for all the love and support.  We are grateful for all those who think about us and praying for us.

Jan 29th Update

According to my mother, Sarah woke up at 3:30 this morning and didn't want to go back to sleep.  She was happy though and wanted to play.  She played with Grandma a lot of the day.  She rode the trike twice and play games that Grandma brought for her.   However, she didn't want to eat or drink for Grandma.  Her numbers were encouraging.  Her methotrexate level was .49 and her creatine was .3.  We aren't sure if we will hit the .1 on Monday or not but it should be close.  

This was from before Sarah being admitted, but it was too cute not to post

Jess and I brought the rest fo the family after Gus's nap in the afternoon.  Sarah was just waking up from a two hour nap and was ornery.  She also mentioned some pain in her throat and she developed a little cough.  Later in the evening she spiked a fever, so they pulled some blood cultures and are watching her close.  Hopefully it isn't a sickness...

Sarah playing with foam stickers and posting them on her face

Sarah had a few visitors today.  She loves when people come to see her and play with her.  Her primary teachers and the primary president came over, as well as one of their daughters.  The gave Sarah some dolls and played a couple games of prettiest princess with her.  She loved it.  She also had another family from the ward come to see her and brought her a finger puppet stage and a balloon.  She wasn't sure about the finger puppets, but she has given two shows to the nurses with them.  I think it will be fun for her.  

Sarah winning at prettiest princess

We are grateful for all the love that is shown to Sarah, as well as the love and support that is given to our family.  We wish we could repay all of you that have shown the spirit of Christ to our family.  We ask the Lord to bless you.  

Jan 28th Update

I am writing this from home.  My mother flew into town today and is spending the night with Sarah in the hospital.  It is good to have her help.  Sarah was very excited to see her.  She kept asking Grandma for the surprises but Grandma was good about sticking to not opening all of them at once.  

Today started off with Sarah in a foul mood.  She was up early and you could tell that she didn't feel well.  She had a bunch of little spills during breakfast and wanted a bath.  We gave her a bath and had to give her some nausea medicine.  She gets Zofran every 8 hours, but some times needs a little extra.  She has a couple of choices.  One makes here a little unstable, and the other is given with benedryl.  We have opted to give her the one with benedryl.  It just means that she will usually take a nap right after giving it to her. That was the case this time.  When she woke up from her nap she was a much happier girl. 

We spent a hour or so riding bikes today.  They have a bunch of bikes and trikes for the kis to ride.  She tried out a number of bikes, trying to find a one she liked.  She never found the perfect one but had fun being out of her room.  

Sarah did a pretty good job eating this time.  This is the first time with the methotrexate that she has eaten anything the first day after.  She even asked for a root beer float after dinner.  

We did have one scare today around 11am.  We were coming back from the bathroom and I looked down to pick up Sarah and put her on the bed.  I saw her chemo line laying on the floor detached.  Oh great, I thought.  I called the nurses and stopped the lines with the clips on the tubes.  It took a bit for the nurses to get there, and only a quarter size puddle had formed.  The couldn't use the tube again since it was contaminated.  The called the doctors and since she had less than an hour left of the chemo, they just stopped it.  They doctors said that they usually have around a 5% tolerance on the medication anyways.  So at least she finished her chemo early then.

Her creatine was 0.2 this morning, which is normal.  Hopefully it stays there.  We are grateful for all your prayers and support.  We hope this stay doesn't last too long.

Jan 27th Update

We are back in the hospital with Sarah.  We got a call at 8am this morning letting us know that there was a bed available for Sarah and we could bring her in at 9am as we had scheduled before.  We finished getting stuff packed.  We dropped Lilly off at school, and swung by the grocery store before dropping Sarah and I off at the hospital.  We got here about 10am.  We are in room 3273-1.  We are in a shared room since Sarah isn't in isolation.  Her roommate is a 17yr old girl who was diagnosed about the same time as Sarah with a form of lymphoma.  She is almost done with her treatment but has spent most of it in the hospital.  We are grateful for the treatment that Sarah has received and that we haven't had to spend that much time in the hospital.  Though we still have 22 months to go.

Sarah was happy most of the day.  She played with the toys that Jess packed for her, and watched some shows.  Toward the end of the day, you could see the methotrexate effects start to come out.  She got less animated and didn't want to be as active.  Shortly before bedtime, she started complaining about her tummy hurting.  That is usually side effects of the drugs.  Hopefully her body will do good with this dose and we can be out of the hospital by mid next week.

Grandma Pheobe is coming out to stay for a few days and help us out.  We are glad she is coming and grateful for the help.  Thanks for all those who help support us as well.  We feel the love and support and wouldn't be doing as well without it.

Back to the Hospital

Sarah had her appointment on Thursday morning.  Her numbers were great.  Her ANC was 1968.  That means that we are being admitted for her final high dose of methotrexate on Friday morning.  Jess got a call midday that said that they didn't have a bed for Sarah first thing in the morning, so they would call when they got the bed free.  We usually are at the hospital at 9am but we don't know what time it will be on Friday.

Sarah loves to have people come and visit her in the hospital.  She loves it when people will come and just play with her for a little bit (15-20 minutes).  She has a great imagination for playing.  She hasn't been sick, so she won't be in isolation.  That means that there aren't the restrictions that she has had the past few times.  So people under 10 can come and visit her as well.  We will probably be in the hospital until Tuesday of next week.  Of course, we are there until she clears the methotrexate which took 9-10 days last time.

Lisy Fish posted a great post on their blog (Fishes for Marrow Wishes on the right) on Wednesday about how she feels about all those who have helped and prayed for them.  I know exactly how she feels.  I echo her comments.  We wish that we could personally thank all those who are praying for us and supported us.  We hope that each of you can feel just a portion of our gratitude for your love and support. We feel it and it helps support us.

Quick Update

Just wanted to post that Sarah's numbers weren't high enough on Monday to get admitted to the hospital for the next methotrexate dose.  She gets checked again on Thursday for a possible Friday or Saturday admit.  Thanks for all the support.

Sunday, Jan 23 Update

It was nice to have a break in Sarah's treatment this week.  It was also a hard week on the family due to the weather.  It has been snowing in Seattle most of the week (Tuesday - Thursday) and left a few inches of snow throughout the city.  For those who aren't familiar with Seattle, when it snows any more than an dusting, it shuts down most of the city.  This is due to the hills and ice that can form on the roads.

Lilly had Monday off from school due to the holiday and ended up having the rest of the week off due to the weather.  Tuesday was the only day that we didn't get notified the day before.  They told us that school would be delayed by two hours, but when Jess went to drop Lilly off, they had canceled it.  So Lilly was home all day for the week.  I worked from home a couple of days this week as well, so I didn't have to worry about catching a bus or dealing with traffic and the snow.

Lilly and I went up skiing on Saturday to Snoqualmie where we have season passes.  Lilly is getting really good with her turns and had a lot of fun.  The snow was great, as they had 6ft in the past 6 days there.

We had stake conference today.  It was good, but reminded me of the stage that we are in with Gus.  Either Jess or I were walking the halls during the meeting.  Jess reminded me the other day that at the end of the month, he will be 17 months.

The girls playing after Stake Conference

We are truly blessed with great friends, family and coworkers.  We are grateful for all the love and support that we receive.  We love you all.

Jan 17th Update

It is really easy to update the blog when I am in the hospital.  Sarah's treatments are on the front of my mind and I can reflect on the day and how it went.  At home, I don't always have the luxury to have the free time at the end of the day to write up a blog post or the reminder of Sarah sleeping in a hospital bed.

We had an appointment at the clinic today to check Sarah's numbers.  Her ANC was 500 but all the other numbers were good.  That means she is on the way up, but hasn't passed the 750 threshold for starting the next dose of methotrexate.  They looked at having a Friday appointment with Saturday admit date to the hospital, but Saturday is full on the admit schedule.  I am not sure how they determine numbers for admits, but I am sure it has to do with the number of beds and who is still there.  I am sure we messed up the schedule with Sarah staying 9 days instead of 4.

Anyways, we have an appointment on Monday and are scheduled to start this last dose of methotrexate with hospital admittance on Tuesday.  I think this will be the last scheduled in patient stay that Sarah has in the hospital.  Of course, if she has a fever and the ANC is below 750, she will be admitted for a few days.

The past weekend was good.  We didn't do anything special other than stay at home.  It was good to have a break from the previous few weeks.  I am adding a couple of pictures I took of Lilly and Gus.

Gus and some of his toys

Lilly playing with her dolls

Thanks for all the love and support.  We feel it each day.

Jan 13 update - home

Sarah's numbers came back as 0.05.  That meant we got to go home.  We were excited after more than a week in the hospital.  It was nice to come home and sleep in my own bed.

Lilly and Gus were excited to see Sarah as well.  Lilly made comments like "I am so glad to see you" and something about not sleeping alone anymore.  Lilly even read a book to Sarah last night.  It was cute to see her being such a great big sister.

Lilly has a cough and we hope that Sarah doesn't get it.  Sarah has an appointment on Tuesday to see what her number are.  If her numbers are high enough, she will be admitted on Thursday, since they are full on Wednesday for admittance.  We will see what happens.  Lilly is also off school on Monday due to the holiday.

Thanks for all the love an support.  We are grateful that people are willing and able to support us during this time.

Jan 12 Update

Sarah had a disappointing but good day today.  Her numbers were 0.11.  Just on the border but not quite over it.  She has to stay another day.  The nurses told me that the doctor didn't want to come in the room and tell me.  He did start out with "You're not going to like this..."  It is disappointing but we want her to clear the chemo and she doesn't get the same amount of fluids through her body at home as she does here when they are pumping a bunch through her port.

She got another bath today.  Yesterday, she was at a week of having her port accessed, so they needed to re-access her.  We took the opportunity to give her a bath, since she didn't have to worry about having the port accessed.  She had fun, in fact she wanted another bath today.  It was fun and helped to pass some of the time away.

Jess and I had a date scheduled this evening that I wanted us to keep.  We had a dinner party with my team at work.  Since Sarah was still in the hospital, Jess had to call around to get someone who could come and stay with Sarah, while we went to dinner.  Diana Anderson came to sit with Sarah.  She played with Sarah when she got here and Sarah had a lot of fun.  She would enjoy it if more people came to just play with her for a little while.  Jess and I had a good time at dinner.  It was nice to get out with my wife and enjoy her company.

Sarah also got out of isolation today.  She has had a cough for a 48 hours, so the nurses talked to the doctors and they took her off of isolation.  I think this is a bigger joy for the nurses, because that means that they don't have to gown up and wear masks every time they come in the room.  It also means that she could go to the playroom and stuff, which we probably won't get a chance to do this time.

Thanks for all those who help out our family.  Thanks to those who pray for us and keep us in your thoughts.  We are very grateful.

Jan 11 update

I realized that I didn't write up a post last night to go up this morning.  It has been a tough week.  Both Jess and I are tired of Sarah being in the hospital.  I don't know how those who are here for months do it? One of the things is probably that we were expecting to be out by Sunday, but now it is Thursday.

Sarah had a good day yesterday.  Her methotrexate level was 0.18 so it is really close to us being able to go home.  We hope her levels are low enough today (Thursday).   She was eating yesterday and has been more active.

We are grateful for the prayers and support.

Jan 10 Update

Sarah's numbers were still high today.  Her methotrexate was at 0.31.  Unfortunately, there isn't anything we can do, other than let her body clear it in her own time.

In getting information from the doctors, I can piece basically how things probably happened.  The methotrexate can harm the kidneys while it is in the system.  This round probably did some damage to Sarah's kidneys.  That caused the creatine to increase as the kidneys began to be under stress trying to clear the methotrexate.  The doctors increased the amount of fluid they were pushing through Sarah.  This caused the kidneys to work harder to keep up but helped to flush the creatine and methotrexate from the system.  They have since lowered the fluid back to what it was to help reduce the blood pressure.  She did have some issues in the morning with higher blood pressure, but not too high.

She has had a good day today.  She started eating a little bit of stuff, which should help her clear things.  hopefully we will be able to head home tomorrow.

Jan 9 update

Sarah's numbers weren't quite low enough to go home.  Her creatine level is looking good at 0.4, but her methotrexate level was 0.4 as well.  They lowered the frequency of the Leucovorin doses that she has been given.  It is just up to her body to flush out the remaining methotrexate.  Hopefully it will be low enough tomorrow, but we don't know.

The doctor did mention today, that they don't know why some kids have a bad round of methotrexate like this, when they did fine before.  I figure that with our travels and her sickness, her body wasn't in top condition and was worn out.

They moved us to a different room this morning.  Around 8:30 this morning the let us know that they were going to move us over to the overflow in the giraffe wing.  It is where were the last time when they moved us.  The biggest headache for me was that they wanted us moved asap, since they needed the bed by 10am.  The plus to moving is that we have a bigger room.

Sarah did have a couple of issues today.  She threw up early afternoon.  It was mostly mucus and some milk that she had drunk a little bit before that.  It was right before her scheduled dose of Zofran as well.  So she got her Zofran as well as some reglan and benadryl for the nausea.  This made her take a nap.  Toward the end of her nap, her blood pressure had creeped up and they had to give her some medicine to bring it back down normal.

Taking a nap.  The dark spot on her face is a sticker.

Sarah is getting a little bit of cabin fever.  She still has a little bit of a cough, so she is still in isolation and quarantined to her room.  She wants to be up and get out, so it is tough keeping her entertained at times.

Thanks for all the support and love.  

Jan 8 Update

Sarah had a much better day today.  She was more of herself.  She stayed up all day and didn't need any extra medications to help with nausea.  He numbers were in the right direction.  Her methotrexate level was 0.85 and her creatine was 0.5.  Both are still high, but she is trending in the right direction.  She may not be at the right levels to go home tomorrow (Monday) but she will be close.

She had a visit from our home teachers, at the same time that Mom showed up to visit.  It was fun to see them and Sarah liked having people come say hi.  She didn't talk long since she asked to have a bath and had a time scheduled.  She gets her IV's disconnected and gets some press and seal over the device accessing her port.  It is the first time she has asked for a bath in the hospital but I think she liked it.

We are grateful for all the love and support.  Lilly and Gus are doing good at home but miss which ever parent is in the hospital.  Lilly also misses her playmate when she is home.

Jan 7 update

Sarah did better today.  I came to relieve Jess around 4pm this afternoon.  She was sleeping at the time but woke up shortly thereafter.  Her blood pressure had risen and they ended up giving her some medicine that brought it back normal.  She didn't seem to be bothered by it and didn't have any pain associated with it.

Her numbers were better today.  He methotrexate level was 2.5 and her creatine was .6.  The methotrexate needs to get down to .1 and the creatine needs to get down to .3 (where it was when she was admitted).  This will most likely happen on Monday, but there is a possibility that we might be here longer than that.

We are grateful for all the blessings that we have received during this process.  Sarah's treatment thus far has been pretty standard, or at least it seems that way to us.  She hasn't had major complications, for which we are grateful.  We haven't had to spend more than a week in the hospital either.  We are grateful that we have competent doctors and nurses while we are here.  Now if we could get Seattle Children's to have better food, then we could almost call the hospital home.

Thanks for all the support and prayers we get from our friends, family and ward members.  We feel them and it helps sustain us.  

Jan 6 Update

Sarah had a better day in some aspects.  She still isn't eating but she isn't feeling as nauseous.  She was in pretty good spirits most of the day.  Last night she spiked another fever, and they started her on a dose of antibiotics.  She has spike fevers a couple of times today, so they are keeping her on the antibiotics to help with that.

Sarah playing on the playbook
She didn't is making a squinted face on purpose

Sarah's numbers were different from what we have experienced the last two times she was on the methotrexate.  Her methotrexate level was 13.0.  That means she still has a lot to clear from her system.  Her creatine level was .8, up from .3 the day before.  This means that her kidneys are under stress.  With her kidneys under stress, she will take longer to clear the methotrexate from her system.  That means she will probably be in the hospital until Monday, maybe longer.  The upside to that, is that if her fever and cough leave by Sunday, she should be able to get out of isolation, so that she can go to the playroom.

We are grateful from the love and support we receive from all of you.

Jan 5 update

Sarah had a rough day today.  She spike a fever around 2 pm.  The doctor's took a look and said it might be the start of an ear infection, but they wanted to wait until it presented itself before putting her on any antibiotics.

Jess came and spent a few hours today.  I went and got Lilly from school since Sarah wanted her mommy.  That gave Jess a little while to be alone with Sarah.

Sarah hasn't eaten hardly anything today.  She has been nauseous and just not feeling very good.  Hopefully she can feel better in the morning and eat some good food.

We love you all and are grateful for all those who support us and pray for us.

Back in the hospital, expected this time

Sarah and I are back in the hospital for her third round of Methotrexate.  She is doing good today.  She ate good for both lunch and dinner.  Jess reminded me that the previous rounds of this, she did good the first day and the next days were harder.  Hopefully we can keep her drinking fluids so that she can clear the methotrexate from her system quickly.

Sarah had a volunteer come and play with her for a little while today.  It was fun to watch.  The volunteer picked up one of Sarah's dolls and played along with her.  Sarah laughed and had fun with her.  She loves to play.

Sarah can have visitors.  She can't have anyone under 10 visit her because she was admitted and had some cold symptoms (cough and running nose).

We are grateful for all the support and love we receive.  It means a lot to us as a family and to me as well. Thanks you.

Home, For a Day

We arrived back home on Monday Evening.  We were all glad to be back home.  I hope that Sarah doesn't associate Utah with going to the hospital, since the last two times we have been there, she has spent time in the hospital.

Our trip home was mostly uneventful, other than needing to chain up the van a few miles before Snoqualmie summit.  We then drove over the summit with chains on, in the rain.  There was snow on the road, but I don't think it was bad enough for chains.  But I have driven a lot in the snow.  We spent Sunday Night in Boise to break up the drive.  It is always nice to not have to drive so far in a single day.

Tuesday morning brought us back into the clinic for Sarah's appointment.  Her ANC was 872 which means she is scheduled to go in the hospital on Wednesday.  She also got a back poke.  She will be isolated when she goes in the hospital due to her lingering cough and running nose.  That just means that we won't share a room and we can't use the parent's lounge.  The nurses have to get anything out of the fridge that we want/need.  It makes it a little tougher, but I understand why they do it.  I wouldn't want Sarah to get someone else's cold or flu, when her immune system is non-existent.

We are grateful for the love and support of all of you.

New Year's Eve 2011

What a year this has been.  A year ago, I wouldn't have thought that we would have gone through so much.  I didn't think that we would spend so much time in the hospital and clinic.   We still have a long road ahead of us with Sarah, but  hopefully there won't be a relapse.

Sarah's ANC today was 300, which means she will stay accessed for our trip home.  Hopefully it won't cause too much of an issue, and the trip can be without incident.  We are planning on spending the night in Boise, and getting into Seattle on Monday Evening.  It is easier to split the trip up over two days.

I had a good week at the ski resort.  Deer Valley had little snow, but I was amazed on how well the groomers kept the slopes.  I was able to teach some great guests and had a lot of fun.

We are grateful for the prayers and support.  We wish you all a happy new year.