100th Post - Chipped tooth

So this is my 100th post on this blog.  Most of the posts deal with Sarah's Leukemia and the subsequent treatment.  That seems to be the driving force of our family for the past few months.  Even a simple vacation for Christmas turns into a week devoted to Sarah.   I am sure one day we will look back on it and not understand how stressed we felt at this time.  We truly feel for those who have to deal with this for years.

Sarah was released from the hospital today with some IV anti-biotics.  That means that we need to give her medicine through her port every 8 hours.  She is left accessed and will be so until her numbers come back up.  This is one of the major differences between Primary Children's and Seattle Children's hospital. Sarah is scheduled to get labs on Saturday.  We are praying that her ANC is above 500 so that she doesn't need to stay accessed for our trip home.

I came home from teaching today and found that Gus had chipped a tooth.  I heard that something happened between him and Lilly and he hit his tooth on the floor.  His front tooth has a decent size chip out of it now.  We called our dentist in Seattle, who is a good friend, and he told us that he wasn't too worried about it, and that he didn't think someone needed to look at it before we returned to Seattle.  We are grateful for our friends.  It helps to smooth over some of life's bumps.

I know at times that it might feel like I just added my thanks to those who support us and pray for us as a closing to the blog post, but we do feel so grateful.  I hope that each of you know that we feel the love and support and it sustains us.  I hope that all those who do pray and think about and support us feels the love of the Savior.  Thank you from the bottom of my heart.

Dec 28th update

Wednesday was  a decent day for Sarah.  I got her to eat a few bites of roll during the day, as well as drink water.  She hasn't had much of an appetite.  She has also been addicted to the cold packs this time.  She started with some of the heating packs, but when she was introduced to the cold packs when she had the high fever, she has preferred them.

Sarah's blood pressure dropped last night and they had to give her some more fluid to help keep it up.  It has been good all day today.

We are right down the hall from Natalie Fish.  I have been able to go and visit with Tyler and Uncle Red. Natalie looks good for what she is going through.  I hope that Sarah doesn't have to go through a bone marrow transplant.

Thanks for all the support, prayers, and thoughts that are had on our behalf.

In the Hospital, Again

Tuesday was a long day.  At 2:30 in the morning, Sarah comes into the room where Jess and I were sleeping, saying that her tummy wasn't feeling good and that she needed the heating pad.  Jess felt her and found out that she was hot.  She was 101.9 F.  That meant that we needed to call the doctor and have a trip to the ER.  I got ready while Jess talked to the doctor.  Sarah and I made the trip up to the ER.  Sarah threw up on the way, and I had to pull over to clean her up a bit before continuing on.  We got to the ER around 4am.  They did the normal stuff of getting her port access and taking some blood.  They started her on an antibiotic while they sent the blood to the lab.  The initial numbers came back with the white blood cells at .6 (or 600).  This wasn't a good sign since it meant that her ANC was most likely going to be below that.  Her ANC came back at 100.  That meant that she had an automatic admittance to the hospital.

My mother came up to relieve me at 7:15 am, since I had to get up to Deer Valley to teach a lesson.  They transferred her up to the ICS (Immune Compromised Services) Unit right after I left.  She was given Tylenol for her fever and has been watched and checked often.

Her fever has spiked a few times during the day.  She had some visitors shortly before dinner time.  Around 8pm, her fever started climbing.  It got up to 41.1 C which is 106 F.  It was scary and it took a bit for the Tylenol to start working.  Jess got to the hospital right after it started dropping.  It was good to have her strength and support.  She is sleeping now and hopefully should sleep through the night.

Christmas was good for us, except that everyone else got sick.  I threw up during the night after Christmas, but felt good enough to work up at Deer Valley the next day.  Others in the house got sick on Monday.  We assume that Sarah has the same sickness that the rest of the family got.

We are grateful for the prayers and support.  Thanks for the comments and notes.

Christmas Eve

Well Christmas Eve was more exciting than most.  Because my brother and his family were in town and they were doing Christmas with Kim's family, we decided to do Santa's stockings a day early.  We also did my parent's traditions along with it.  These traditions include breakfast and clean up before going in the room withthe Christmas tree and opening presents one at a time.  This made for a long day but it was fun.

Jess and the girls got sick in the late afternoon.  Jess had the chills and didn't feel well.  Both Lilly and Sarah started running fevers.  We gave the girls priesthood blessings and worked on getting people to bed.  We checked Sarah's temperature and found it was 101.6 F.  Because Sarah has a central line (her port), any time she has a fever over 101 F we need to take her to the ER so that they can do a blood culture.  So, at 9 pm on Christmas Eve Sarah and I head up to Primary Children's Emergency Department.  Not quite how I was expecting to spend Christmas Eve.  My parents took over putting Lilly to bed and finish up the last minute wrapping for Christmas.  At the hospital, Sarah had some blood drawn and was given an antibiotic to prevent and bacterial sicknesses.  I am glad that Sarah's numbers were high or else it would have been an automatic hospital admittance.  We got home around 1 am.

I wish the excitement ended there.  Jess was woken up in the middle of the night to Sarah screaming.  Lilly was throwing up over the side of the top bunk.  It was hitting the ladder and splashing everywhere, including on Sarah, hence the screaming.  Jess got it cleaned up and everyone is doing better this morning.

We wish you all a Merry Christmas and hope you are blessed as you remember the birth of our Savior this day.  We are grateful for the love and prayers that we recieve and that are said in our behalf.

Christmas Eve Eve

Lilly got to go up skiing on Thursday with her cousins, Brooklynn and Emma.  Uncle Aaron and Grandpa Butch joined us as well.  It was a fun day with the sun out.  Lilly improved a lot and was working on her turns.  She even got off the bunny slope and skied down Success (one of the long green runs at Deer Valley).  It was a fun day for all of us.

Friday was a log day.  Sarah and I had to get up early to head up to Primary Children's.  The blood sample that they took on Thursday didn't work to get any lab results, so they wanted to take a full blood draw.  This means that they either access the port or do a needle in the arm.  We knew that Sarah wouldn't like the needle in the arm, so we had to go up to Primary's to get the port accessed.  Her ANC was up around 4,000 but her hematocrit had dropped a half a point to 21.7.  Hopefully her hematocrit will go up the next draw on Monday.  

When we got home (around 10:30am), we had a big family picture taken.  Since we hadn't been together as a full family for a long while, my parents wanted a picture.  We tried a couple of shots in different areas of the house.  Hopefully we got a good shot of everyone.

Friday night was the big Blackham family Christmas party.  The past few years it has been here at my parents.  That meant that we had to help set everything up.  It was a good party with a Nativity and Santa coming at the end.  The girls had a fun time.  Sarah came up and spent some time as well.  Jess, unfortunately, got sick earlier in the day and wasn't feeling good during the party.  She ended up going to the ER right after the party, and found out that she had a UTI.  

We are grateful for all the support that we receive and the prayers made on our behalf.  

Thursday Update

Sarah got her lab results late Tuesday.  Her ANC was 1100, but her hematocrit was 22.  They transfuse whenever it gets below 20.  They scheduled another set of labs to be done on Thursday.  We got some steak and got her to eat it on Tuesday night.  On Wednesday, you could see her start feeling better.  She went upstairs from her basement and played with kids.  Aaron and Kim and their kids got here Wednesday evening.  It was fun to see her play around with her cousins.  She didn't want to eat dinner and retreated to her safe place in the basement for dinner and the rest of the evening.

We are excited for Christmas and the activities that it brings with Family.  We are grateful for all the support and love we feel each day.

In Utah, Again

We are safe in Utah.  The drive was pretty uneventful which is the way we like it.  We stopped with my Uncle and Aunt in Richmond, WA.  We love to see them on our trips.  The girls and Gus did decent in the car.  Gus even took one nap, even though he usually takes two.

The sickness I had been feeling over the past week or so got worse and I made a trip to the insta-care this afternoon.  They though it was a possible sinus infection and gave some medications to help with it.  I hope it clears up quickly.

The girls and Gus have loved being at their grandparent's.  They have more people to play with and they get to stay up later.  Sarah is showing some signs of low levels of hematocrit.  She has labs scheduled for Tuesday morning.  Hopefully, she doesn't need any transfusions while we are here and Utah and she can have fun with family that comes around.

We are grateful for the love and support that we feel from all of you.  Thanks so much.

Home Again and Travel Plans

Sarah's methotrexate level was 0.07, so she was able to go home on Friday.  She was excited to go home. She still has a cough that is probably due to a cold.  We are planning on leaving for Utah after lunch on Saturday.  We are stopping at my Uncle Russ's in the tri-cities area.  The girls love to stop and see Uncle Russ and Aunt Judy.

Friday night, I had a touching experience that I wanted to share.  Gus has been crying pretty hard going to sleep.  I went into his room to try and calm him down.  He cried just as hard when I was trying to comfort him.  After a few minutes of just holding him, he started to calm down and let me lay him down in my arms.  I then was able to put him to sleep holding him.  I don't think I have ever been able to do that.  I was given some inspiration that this is a lot like the Savior and us.  How often does the Lord just want to hold us and give us comfort, but we resist and fight.  Finally, when we submit to his will, we get an overwhelming sense of peace and love.  It was a touching experience for me.

We are grateful for all those who have prayed and supported us during this time.  We have felt a great love from many people.  We are constantly supported by those who care and love us.  Thank you very much.

Good News

I know my mother have been praying for Sarah's methotrexate numbers to clear quickly, as we are planning on leaving for Utah shortly after Sarah gets out of the hospital.  Last time, Sarah's first methotrexate level was 2.0.  The following day it was 0.19 and she was released the following day with it somewhere around 0.03.  We got the numbers for today and it was 0.96.  That means she has a good chance of hitting the 0.1 number by Friday so that she can go home.

Today has been a mostly good day.  Sarah hasn't wanted to eat much all day.  She has done of good job of going to the bathroom.  There was a stretch this afternoon where she was going every 10 minutes for a couple of hours.  She still has a bit of a cough but has been doing good.

We are grateful for the prayers and love and support that we feel from all of you.

Tyler Fish Family

I just wanted to put up a quick post about some family of ours.  One of my cousin's cousin, who I consider family, is going through some treatment that we hope to not have to go through with Sarah.  They have 2 kids that are getting ready to have bone marrow transplants.  There website is here:
http://fishesformarrowwishes.blogspot.com/

One of the things that Tyler posted is that you can help by giving blood.  Our hearts go out to Tyler and his family.

Never a Dull Moment

Sarah's first day in the hospital was exciting.  Since we are in isolation, I have been unable to get things from the parent's room, like I had with Sarah's past stays.  We have had to ask the nurse to get things from the fridge.  It has been a little more difficult but we will manage.

We were told around lunchtime that we had a 500% chance of moving rooms.  Because Sarah was only getting chemo the one day and they needed bed space for other kids, they moved us out of the SCCA (Seattle Children's Cancer Alliance), or hem/oc, ward down the hall to an open room.  We moved at shift change which is around 7pm.  The new room is G-3023.  It is a lot bigger and nicer than the room that we were in.  There is a sofa bed, rocking chair, and a big window.  It is a nice change.

Sarah had some exciting things happen before she made her move.  She got a visit from a policeman who was bring some presents and helping the kids in the hospital shop for their families.  So everybody in our family got a present.  Sarah was excited to get something, as she always asks the nurses for more toys.

The other thing that happened was that Sarah was moving her bed to be in a sitting position, and she knocked over her IV pole.  The pole holds up saline, the methotrexate, and some sodium bicarbonate solution.  When it fell over, it pulled the saline tube out and it was leaking all over the floor.  Luckily, the other 2 bags and lines didn't have issues, and the saline tube was clamped off and not currently being used.  One more thing to keep our lives interesting.

Thanks for all the love and support.

Back in the Hospital

I got a text from my mother today asking if I was back in the hospital with Sarah.  Yes, we are.  It also tells me that I haven't put up a blog post in a while.  Sarah's ANC number yesterday was 2300.  It was were we wanted it to be.

So we are back in the hospital on schedule.  Sarah gets another dose of Methotrexate today over 24 hours.  She is in the hospital until she gets below 0.1 for her Methotrexate levels.  She did this by Saturday last time.  Hopefully she can do it faster this time.  We are in "isolation", which basically means, we don't have contact with other patients or parents in the ward.  They put us in isolation because Sarah had a runny nose yesterday in clinic.  She gets her own room but the nurses need to get things from the fridge and stuff.  We can have visitors, but they can't linger in the ward after the visit.  Just like before, they also ask that those who are sick to not come and visit.  Sarah is in better moods this time, compared to last visit so hopefully it will be easier on everybody.

Life never seems to stop.  Lilly has been sick for the past week or so with a cough at nights and we have had her not sleeping in the same room as Sarah.  She came home from school with her eyes all red.  Jess took her to after-hours clinic and found out she has pink eye.  So she is home from school today.

This weekend was fun.  Jess took Lilly to the ward Christmas party on Saturday.  She had fun.  She then went with dad skiing for a couple of hours.  She had forgotten all she did from skiing last time.  She did good and is working on getting her stopping down.  We also had a group of carolers from the ward surprise us last night with a bunch of Christmas carols.  It was fun.

Thanks for all the love and support.  We are grateful for all those who show their support for us.

Heating Pad Obsessions

It has been a rough couple of days at home.  Sarah isn't eating very well and is having tummy issues.  We assume that this is a side effect of the drugs she is taking.  She constantly loves to have a heating pad on her tummy.  I think Sarah's Santa list is just heating pads.  She likes the ones you put in the microwave to heat up.  We heat up the one we have 5-6 times a day.

Sarah had an appointment today and her ANC was 2200.  That is good news for the ward Christmas Party this Saturday.  She was also weighed and is down to 18.5 kgs.  She started around 22.5 kgs in August.  That means she is down almost 9 pounds from when we started.  She looks it.  She is no longer our husky girl.  She is just as slim as Lilly.

We are asking for prayers for her tummy issues and that her numbers can be above 750 next Monday.  That allows us to continue the treatments on schedule, since we are planning a trip to Utah for Christmas.

We are grateful for the continued support and love we feel from all of you.

Heading home

It is Saturday and we are waiting for numbers for Sarah's methotrexate levels to see if she can go home today.  I thought I would add a couple of pictures to show Sarah in the hospital.  These were taken the first day in here.

Sarah in her bed with her tower 

The fluids they hook her up too.  The yellow one on the left is the methotrexate.

A quick update on Gus.  He got some medecine for his croup while in the ER and has done much better since.  He slept through the night and seems to be on the mend.  

Numbers are back in and she has a 0.02 methotrexate level.  That means she can head home today.  We will be back in a week and a half or so.

Life is never easy, is it?

Life is never easy, is it?  Jess was up all night with Gus.  She thinks that he has croup and he wasn't able to sleep.  She is taking him to the ER this morning.  Since she was the only at home last night, she wasn't able to take him in the middle of the night.  Luckily we have Sarah's nebulizer that Jess was able to use to relieve his symptoms.  Hopefully, they can in to the ER quick.  At least they are coming here to Children's, so we will be in the same place.

In addition to Gus's issues, we got word this morning that Jess's Mom was in a car accident on her way to work this morning.  We hear that she is ok and Rob, Jess's Dad, was on the way to help her.

Sarah has done good in the hospital.  The doctor's yesterday were still looking at Saturday or Sunday for being released.  We will know more later today.  She needs to have her methotrexate level below ".1".  The level they took yesterday was 2.  She tells all the nurses that she needs more toys, even though she has a bunch.  She had a couple of visitor's yesterday, and loved to see them.  

We are grateful for all those who send us their prayers and support.  We are grateful to have so many people who lend their support to us.

Two years to go

So Sarah's ANC number was 1300 on Monday.  That meant that we got to start her next round of treatment.  It also means that I am writing this from the hospital.  It also starts the two year clock for when we will be done with her treatment.  We are told that once we hit maintenance, the treatment is pretty easy.  It drops down to an appointment a month.

This round of treatment is when Sarah gets a large dose of methotrexate over the course of 24 hours.  She then needs to clear it from her body.  The doctor's told us to expect Saturday or Sunday to get out of the hospital.  We are telling Sarah that if she drinks a lot, she can get out sooner.  She has done a good job today about drinking and eating.  We hope she keeps this up.

She is able to have visitors between the hours of 8am and 8pm.  The unit asks that anyone who is sick to not visit since they are many kids that have a compromised immune system.  She is in room T-3267 Bed 2.  She is sharing the room with a cute 2 yr old who had a form of lymphoma.  The other girl is on her last treatment, and should be home and done by Christmas.  Sarah enjoys having the other girl to talk to across the room.

We are grateful for all those who lend support.  I know that Jess has already had to call a couple of people to help out at the last minute.  I am grateful for all of you that help out.

Thanksgiving week update

Sorry for the lack of an update this week.  It has been a busy week and I blame the turkey for being slow in getting the post up.  We saw Rob and Gloria off on Friday.  It was good to have them here and share Thanksgiving with them.  We loved having the help.

A couple of highlights from the week.  We were able to get a baby-sitter in on Monday and go out with Rob and Gloria as well as our friends the Barlows.  We went to an Indian place that we love, and the Barlows introduced us to some amazing gelato.  It was good to get out of the house with Jess and have a night away.  Thanksgiving was great, with lots of food.  It was a nice relaxing day too.  Jess, the girls and her parents were able to go on Friday to the last dress rehearsal for Cinderella that is coming to the 5th Ave theater this week.  They got tickets through the Make A Wish foundation.  They had lots of fun and were very excited.

Sarah was still on her antibiotic until Wednesday this week.  It took her a while to get her numbers back up.  Her ANC was ~350 on Wednesday.  This meant delaying the next round until this next week.  The benefit to that was that she didn't have to be in the hospital for Thanksgiving.  She has an appointment Monday morning.  If her ANC is above 750 (which we think it will be), then she has a back poke right after her appointment and she will be admitted on Tuesday for the next round.  That also means that we will start the 2yr clock.  We then have an end date for her treatment, which is exciting.

This next round of treatment will be different because Sarah will be admitted into the hospital every two weeks.  She is given a high dose of methotrexate and needs to clear it from her system before she is released.  This usually happens within a few days, but if she doesn't drink, it takes longer.  Hopefully, she will be in the mood to drink, as she hasn't been eating or drinking much the past week.  We also hope that Lilly and Gus are good for Jess, so she won't get too stressed with me in the hospital with Sarah.

We were all able to go to church today.  It was good to be there as a family.  Lots of people were excited to see Sarah.

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

Sunday update

It is a beautiful Sunny day today in Seattle.  Even though it is getting cold and starting to feel like Winter. Sarah is still on the anti-biotics that she was prescribed at the hospital.  This is because her ANC number hasn't gone back up yet.  We had appointments to check on Thursday and Saturday.  It was 0 on Thursday and 10 on Saturday.  It needs to be above 200 before they take her off the anti-biotics.  Her white blood cell count is coming up as is her platelets and hematocrit.  That also means that she stayed home from Church today.

The good news is that she is finally starting to act like herself today.  She is eating more than a couple of bites (this started yesterday) and she is happy and playing.  In fact, I was playing "shooter" with her.  She has a hanger that she pretends is her gun.  I pretended that she shot me and I fell on the bed "dead."  She then says, "now it's level 2."  That meant it was time for me to get up and play again.  I had to laugh at that.

Rob and Gloria, Jess's Mom and Dad, are in town for Thanksgiving.  We are excited to have them here and be able to have some fun with them.  The probability for Sarah starting the next phase of treatment this week is small since her ANC needs to be over 750.

Thanks for all those who are praying and thinking about us.  Thanks for all those who are doing little things to help make our lives easier.   We feel the love and support and are very grateful for it.

Back home again

Sarah and I are back at home.  The hospital stay was nice and quiet.  Sarah multiple times said she wanted to be home.  Unfortunately, we have at least  4 more stays of similar length (maybe longer) with this upcoming phase of treatment.  It is not something that we are looking forward to, but it will be nice when it is done.  Sarah is on two antibiotics until her ANC numbers get above 200.  We hope that is Thursday when we go to clinic next, but we will see.  The lab results from Tuesday morning's blood draw showed her white blood cell count rising.  This is good news and keeps us hopeful for a short duration of her antibiotics.

Thanks for all the prayers for us.  We feel it and it helps to support us.

Crazy week update

It has been a crazy week.  I have put in some longer hours at work this week and some of the house has been a little sick.  Just one of those weeks.  Sarah's appointments went well.  Because of her numbers, they had her come get labs in the clinic on Saturday.  Her numbers were high enough, but they want them to check them on Monday as her platelets might need to have a transfusion then.

It looks like she will have a week off were they just take labs and then we will start the next round the following week.  The next round involves hospital stays since they will give her a high dose of Methotrexate over 23 hours, and then make sure it gets out of her system.  She will then have 2 weeks to get her numbers back up before they do it again.  This happens four times as part of this next round.

I took Lilly on Saturday to my office.  I had to get some extra work done and wanted to give Jess some down time without Lilly.  She loves to come to the office and play.  I have nerf guns that she loves to shoot, as well as write on the whiteboards.

Saturday night kept the trend for the week.  Sarah had a low fever on and off for most of Saturday.  It would bounce between 99 and 100.  We were keeping an eye on her.  She had some pain medication in the evening.  At bed time, she was super hyper.  We got her calmed down and thought we were done with another day.  Gus had fallen asleep yet and started coughing.  Jess checked on him and he had spit up.  After cleaning him up, we put him back to bed, when we hear Sarah start whining.  She needed to go to the bathroom.  As part of that we checked her temperature.  It was 101.3.  Above the magic number.  Jess placed a call to the Oncology fellow on-call and we packed a bag quick and I took Sarah to the ER.  Her temperature had gone down a bit, but was still close enough that they still admitted her.  So we will be in the hospital 2-3 days as we make sure her blood culture's are clean and she gets some anti-biotics in her.  It also puts me at the third Sunday in a row where I am at the hospital.

Thanks for all the love and support.  We feel it and are thankful for all the blessings we receive.

A funny story

A couple of things about Sunday night.  Sarah has talked a couple of times about having my hair match hers.  She gets excited when talking about it.  Since I needed a haircut, I decided that I would support Sarah by cutting my hair off.  Jess wasn't ready to have a husband with a completely bald head.  The compromise was to cut it down to a '2'.  That suits Sarah and she says that we are twins now.

A few sisters from Church came over on Saturday and helped to clean the house.  It looked great.  We decided to have root beer floats for dessert on Sunday night.  Sarah tipped over her cup and it poured on to the floor, the nice clean floor.  So I had to mop it again so it wasn't sticky.  The funny part was that as we were consoling Sarah, since it spilled on her, Lilly pipes up with the phrase "I thought that was me peeing on the floor."  She repeated this a couple of times with us laughing at the situation.  We love our kids and the joy that they bring to our lives.

We are grateful for all the love and support that we receive.  It helps keep us sane during some of these difficult times.

Sunday Morning Transfusion, again

Another Sunday morning finds us in the clinic.  At least we didn't come through the ER today.  Sarah's platelets were low yesterday, so they wanted us back into today to check them again.  They were low enough to have her get transfused, so we will be here in the clinic for a few more hours.

It has been a busy week.  Sarah had a physical therapy appointment on Thursday.  Sarah likes these appointments but they make her work.  Jess says that at this one, Sarah got tired pretty fast.  The therapist is trying to get Sarah to not walk so much on her tippy toes and to put more pressure on the inside of her foot when she walks.  Maybe that will help her to not be so clumsy.  If that is the case, maybe her dad needs to go to some therapy too.

I worked from home on Friday because my office is being moved to a new building.  We will be moved in on Monday.  It adds maybe 1/4 to 1/2 a mile to my commute on the bike.  That means I will burn more calories in the morning.  Friday evening, I went with the Young Men in the ward to the temple.  I love going to the temple and feeling the spirit there.

On Saturday, I took Lilly to Home Depot for the kids workshop.  She built a picture frame, which is cute. I dropped her off and home and picked up Sarah and took her to get her blood checked.

Mid-Week update

Sarah had an appointment on Tuesday to check her numbers.  It turns out her platelets were low (a '6'), so they scheduled platelets in addition to what was being done on Wednesday.  Sarah's Wednesdays appointment started at 12:30pm and went until 7:30pm.  We went through a bunch of information about the rest of her treatment.  We also did the math on the rest of the more intensive treatments.  We have another 8-10 months before she hits "maintenance."  During the next phase of treatment (interim maintenance), Sarah is in the hospital for 2-3days  every two weeks.  They make sure that her numbers get above the threshold before admitting her for the chemo dose, so it might be longer than 2 weeks between doses.

Gus proud of himself

Gus is walking halfway across the room.  I am attaching a few photos for you, showing Gus walking by himself.  Soon, he is going to be a terror walking everywhere around the house.

Taking more steps

On top of Sarah's issues, Lilly was sick for Monday and Tuesday.  That meant that we cancelled our Halloween and Lilly stayed home from school.  She is harder to take care of when she is not feeling well so it puts an added stress on the Family.

Cute Gus

We are grateful for all the prayers and support.  Thank you all for caring about Sarah and our Family.

Sunday Morning's ER visit

Well, things never stay calm do they?  I am writing this in the clinic at the hospital.  This morning (Sunday) after taking Sarah to the bathroom, she fainted on her way back to bed.  She has never fainted before.  We knew her red blood cells were low but didn't think they would affect her like that.  After a call to the Oncology on-call, Sarah and I were off to the ER.  The nice thing about having a child with cancer is that the oncology on-call calls ahead to the ER, so they are waiting for you and get you right into a room.  They took labs and an EKG and made sure everything looked ok.  Her numbers weren't that bad.  Her red blood cells were at 25.  They usually don't transfuse until they are below 21.  The on-call decided that she probably needed the red blood cells anyways.  After getting all the labs done, the ER transferred us up to the Hem/OC clinic, where we usually go.  They hooked up the blood and started the transfusion.  That is where I am at now.  Sarah has perked up and is happy watching a show.  But it is never fun to be at the hospital or clinic on Sunday morning.

We have increased our Christmas list over the past week too.  My Nintendo DS that the girls play with finally broke, so we probably need a replacement.  Our GPS LCD screen also decided to go wonky.  It now just displays a snowstorm on it.  I love that technology makes our lives better, it is just a pain that it breaks.

Yesterday, we had the ward trunk or treat.  Sarah's numbers were 500 that morning, so we didn't go to the dinner and games portion.  We got there in enough time that Lilly was able to go in a play a few games.  Both girls had fun trick or treating the trunks in the parking lot.  It is awesome to spend time with the ward.  We have a lot of good friends in the ward.

We are grateful for all the prayers and support.  This episode helps to remind me that we have a long ways to go for Sarah's treatment.

Busy Week, at least it felt that way.

Sorry for the lack of posts this week.  It has been a busy week.  Sarah didn't have appointments on Monday and Tuesday, but both days were busy.  Monday was my mother's last day her, after spending a week with us.  She was a great help.  Tuesday, I had to get up early to drop my mother off at the airport for a 6am flight.

Wednesday was Sarah's appointment.  Sarah's ANC is still high, which means she most likely can do all the Halloween stuff.  We will be happy about that.  She wants to be a princess.  Lilly wants to be a spider and a princess.  

Jess and I were able to go with my work to a celebration for our GA release of Amazon Linux AMI.  Our team when to Wild Ginger for dinner with spouses.  I was glad that we were able to find a baby sitter and have a night to ourselves.  We need to do it more.  

Gus is starting to walk by himself.  Well, he is walking 3-4 steps by himself.  He is getting busier, which means we have to watch him more.  Kids just don't stop growing.  

Thanks for all the love and support.  

All I Want for Christmas is ...

Lilly has had a really loose tooth for about 2 weeks.  Today it looked like it was hanging on by less than a thread, but she wouldn't let anyone touch it.  She was too afraid that it was going to hurt.  Finally, this evening she was whining that the tooth hurt and so we pinned Lilly down, and I figured I was going to pull it out.  She kept her mouth shut tight.  Before I was able to pry her mouth open to grab the tooth, I had bumped it from the front and the tooth came out.  Now she doesn't have either of her front teeth.

Lilly's holes in her mouth

This week has been tough.  We had an appointment everyday this week for Sarah.  Wednesday's appointment was 6 hours long.  We are grateful that we had extra help from Grandma Pheobe for the week.  She came in on Tuesday night.  Today, we found out how tired she was.

Grandma sleeping on the couch

I had my birthday on Friday.  My team at work took me out to lunch.  We went to Lunchbox Laboratories.  It was yummy.  They had a really good pumpkin pie shake.  For dinner, Jess and I went to Chandler's Crabhouse.  That was yummy too.  It had been a while since Jess and I had a night out and it was nice to have some one on one time with my wife.  It was a good birthday.  Thanks for all the birthday wishes.

We are grateful for all the prayers and support that people have given us.  Even those prayers from people across the country can be felt and help to bolster our spirits.

Update on Sarah's Treatment

It has been a little while since my last post and there are a few things I need to send an update on.  This week is a busy one.  Sarah has an appointment every day this week.  Her ANC was ~900 and so we are continuing consolidation.  It also means that she is about 4 weeks away from the time that we start the 2 yr  clock, which is how long she will have left of her treatment plan.

Monday, Sarah went to a physical therapist appointment.  One part of the chemo, is having pain in the legs.  The PT told us that Sarah's gluts aren't strong enough.  That is causing her to walk on her tippy toes.  She also tends to walk on the outside of her feet.  They have given us some exercises that she needs to do to strengthen her gluts and getting her walking right.  There is the possibility of her getting some braces to help her walking for a little while.  We will have weekly appointments for the next little while with the PT.  Sarah liked the exercises and thought they were fun.  That will go a long way in keeping her happy doing them.

My mother came in town yesterday.  The girls and Gus were excited to see her this morning.  She is here for a week to help out.  We are grateful to have her with us and the help that she will provide.  We are thankful for all those who have helped out in other ways as well.

Some Thoughts And a Couple of Pictures

I have been thinking about a number of things lately.  One of the things that I have thought of is how grateful we are for everyone who has served us.  I stayed home with Sarah today and we came across one of the Mormon Messages that does a better job of putting into words some things that I have been thinking.  Here it is:  (go ahead and watch it before reading on.  It is only 4 minutes.)

A few things I want to point out in that video.  First, I can related to the family in the video so well.  When the wife talks about getting the phone call to admit the daughter, I can feel in her voice the same feelings that I felt when I got the phone call from Jess.  Second, around 2:45 in the video, the father talks about how people he never met were praying and fasting for his daughter and how he felt the strengthen from those.  I too have felt that.  It is very humbling to know that others out there are praying  and fasting for me and my family.  I feel very weak at times, because I know that there is nothing that I can do to let others know the true meaning that it has in my life.  Jess came home today and told me that people in the ward told her that their children were praying for my little Sarah. I don't know that they is anything much sweeter than the prayer of a child.

Lastly, I want to reiterate the last words that are said in the video; "For the Master I extend thanks for your work to serve the children of our Heavenly Father. He knows you, and He sees your effort, diligence, and sacrifice. I pray that He will grant you the blessing of seeing the fruit of your labors in the happiness of those you have helped and with whom you have helped for the Lord." (Elder Eyring, April 2011 Conference).  I do pray that the lord does bless all those who have prayed for us and who have served us.  We am forever grateful for all of those prayers and the service that has been performed.

A couple of pictures to leave you with.

Sarah and her rain coat.  She still loves to smile.

Gus riding backwards

Make a Wish

Jess got a call today from Make A Wish Foundation.  They are going to grant Sarah a wish.  We are excited.  There is still a process to go through and she needs to decides what her wish is.  We probably won't have her do her wish until next summer when she is in maintenance and fills better.

A funny story.  Jess was asking the girls what a spot on the carpet was.  Sarah immediately replies with "it's not me" and Lilly says "I didn't do it."  This caused Jess to crack up laughing.  Then Sarah tells her "don't laugh so hard, you might throw up."  This causes Jess to laugh even harder, and Sarah gets more worried and whining for mom to stop.

Surprise: You Get a Week Off

Sarah's appointment today was a little surprising.  She has done well this week and has been happy.  The only issues have been some pain in her legs.  We had planned out the week, and while it would have been tough, we had some plans in place.  The clinic was slow today, though.  Sarah's labs were supposed to be at 9am and they didn't get done until almost 10.  We waited for the doctor after we were in a exam room.  She came and talked to us and the lab results for the blood draw wasn't ready yet, so we waited for a little while longer.  When the doctor came back with the lab results, she told us that we are waiting a week, because her ANC was 48.  We were confused since it was 650 last week.  The doctor says that it is common since she had two weeks of her cytarabine and sometimes kids have two drops, one from the first week and one from the second week.  That means that we get a week off so that her ANC can get back up above 750.  At least that means that we don't have to worry about the crazy schedules this week.

We did get some good news though.  Due to our "being angry" at Sarah having to get shots for the PEG instead of through her port, the clinic has moved over to doing the PEG through the port for everyone.  I don't know where they get that we were angry, just a little frustrated since we got it through the port in Utah.  I guess Dr. Thompson (Sarah's Attending) had been trying to get the clinic switched over for a while and we were the straw broke the camels back.  It means Sarah won't have to get the dual shots again.  

Sarah got a spiderman sticker that she brought home from the clinic for Gus.  Right after dinner, she gave it to him and said "I hope you like it.  You will be the coolest boy in town."  She says some funny stuff sometimes.

Missing Teeth and Balloons

This weekend was pretty good.  Sarah got a slight fever on Sunday morning so we kept her home from church.  She wanted to go and if she wasn't dealing with leukemia, we probably would have let her go.  I struggle sometimes with what I think is best.  Jess is much more cautious than I and it is a good thing.  I defer to her a number of medical matters, where she has the upper hand in knowledge and experience.  There is always next week for Sarah to go to Church.

I went to the temple on Saturday.  On the way home, I called home and got informed that Lilly had lost another tooth.  That makes 4 teeth lost for Lilly.  This was one of her front teeth though.  Maybe she will be singing "All I Want for Christmas is My Two Front Teeth" this year.

Toothless Smile

Gus has an obsession with balloons.  Sarah brought one home from going shopping to get new shoes to help her tendons in her feet stay stretched.  As soon as he saw the balloon, he was saying "balloon" and trying to get to it.  He loves to play with them.  Jess got out some bubbles to blow for him.  He recognized what they were.  He was playing on my tummy at the time, in the middle of the floor.  He got himself off, and I helped him stand, thinking he could practice walking, but as soon as he had a direct path toward Jess, he started running.  It was pretty funny.  He made it to Mom, but she wasn't ready yet to catch him, so he tumbled on the floor.  He quickly straighten himself, so he could play with the bubbles.  He is a crazy kid sometimes.

"A Balloon"

Surprise Visit and Field Trip

Sarah's appointment on Wednesday was good.  Her ANC had already started to go back up and was at 650.  That means that she can go to church and doesn't have to be quarantined.  It is possible the Vincristine that she got on Wednesday might drop it a little, but we are hoping that it comes back up quick.  Sarah needs to be above 750 on Tuesday, so she can continue with this round of treatment.  Tuesday is a check point and is the middle of consolidation.  It also means that the next two weeks will be back on the 4-5 appointments a week.  I guess that is how it goes.

Today, Jess and Sarah had a surprise visitor.  A member of the Shoreline ward dropped by to say hi and had a few presents for Sarah.  Her daughter had gone through a number of surgeries right in row and knows the feeling of being in the hospital "all of the time."  Jess and her had a good talk and Sarah enjoyed getting a new sticker book and more crafts to do.

Lilly continues to have fun in school and had her first field trip on Wednesday.  They went to Carkeek park and looked at all the art work.  She enjoyed it despite the rain.  More firsts for our family.  Each of these makes me feel a little older.

Thanks for all the love and support.  We are grateful for our ward who continues to bring us meals and provide other support.  It makes life easier especially on some of the stressful days.

Sarah's Platelets and Lilly's School

Sarah and I went to the clinic on Sunday morning to check her platelet levels.  They hadn't dropped much so we were sent home after the test results came back.  She did good to get her port accessed and she was glad to not have to be there too long.  Her ANC is below 500, so she is on isolation.  She still has to go with Mom to pick up Lilly from school but wears a mask to help protect her.

Lilly gave our family home evening lesson yesterday.  She is cute because she takes a story from the Friend and will tell it.  She gets most of it right, but takes a fair amount of artist license.  She also bore her testimony after the story.  She loves to be on stage and to be the center of attention.

Lilly's teacher talked to Jess on Monday when Lilly was being picked up.  She recommended that Lilly take the advanced placement test, to see if she would qualify to go to one of the advanced learning classrooms next year.  It was something that I did as a child.  There are a number of factors that would go into what we should do for her.  She is reading really well and knows basic math, both addition and subtraction.  I quizzed her on Monday night and she got 12 + 8 after a bit of thinking about it and did a number of basic subtraction problems that we gave her.  She kept asking for more problems that she could do.

We are grateful for all the love and support we have been given.

A couple of Funny quotes. - Consolidation 19

Conference was great today.  I loved being able to watch it on our roku.  It is wonderful to hear the word of the Lord.  I do need to get started on doing Family History work.

I thought I would add a couple of funny quotes that happened today:

When mom asked Lilly if she wanted to read some Clifford books to her, she said "that's too boring for me."  These books are the "beginning to read" books.

For the first half of the day, Jess thought that Sarah looked like she had a fever.  Then she comes to me, and says "I know why I think Sarah has a fever.  It is because she is pink.  I am not used to seeing her with color."  The blood transfusion helps.

Thanks for all the love and support.  We feel it daily.

Transfusion - Consolidation Day 17

Yesterday, Sarah and I spent fours hours in the Clinic getting a blood transfusion.  She did good, but was ready to go when we were done.  Sarah has done great for her last couple of appointments.  She has been excited and happy.  She gets beads for everything that happens, like transfusions, post access, chemo, etc. She keeps them in a pretty bag.  It is a program called Beads of Courage.  We need to catch up with all the beads that she should have gotten in UT.  We didn't get beads there because Sarah didn't want anything to do with anything that first month.

Sarah has gotten worse over the last couple days in taking her medicine.  It doesn't matter what it is, she says it is yuck and it takes us a long time to get her to take it.  We are lucky she doesn't have to take anything for treatment right now.  In fact, the zophran that she has been on for nausea, she won't have to take for a week and a half or so.  She only gets vincristine next week and that doesn't cause nausea.  So that means she won't need to take anything oral medications for the next little while.

I have had a couple of emails with my mother that made me think of something that I thought I should mention.  Because of Sarah's schedule the way it is, we don't tend to do a lot of forward planning.  We don't know really what is going to happen much more than a week out.  We schedule her doctor appointments for the following week at her appointment for the current week.  It also means that we can't commit to somethings very far in advanced.  I am sure things will get better as we get further down her treatment.

We are grateful for all the love and support.

Princess Party and More Clinic Visits

Sarah and Jess have been to the clinic everyday this week.  Sarah's hematocrit is approaching the level where she will get a transfusion.  During her clinic visit today, the doctor went ahead and just ordered the blood for tomorrow.   Her appointment is in the afternoon, and I will go and sit with her while she gets a transfusion.  

Sarah's appointment today was supposed to be short, or at least I thought so.  We got there around 9:30 and got labs done.  The clinic was a little late in seeing us for the appointment with the doctor, but that was fine.  We got a surprise, when Sarah was ready for the chemo meds.  She was schedule for the PEG and the Vincristine.  In UT, Sarah got the PEG in the hospital and it was a push through the port.  In Seattle, the PEG is two shots in the legs.  So we had to put numbing cream on Sarah's legs and then wait for it to numb them up.  Sarah didn't like the shots but she did pretty well.  Yes, there was screaming and Mom and Dad had to hold her still but she was done with the crying fairly quick after the shots.  They need to watch her for an hour after the shots due to the possibility of an allergic reaction.  We ended up getting out of the clinic around 2pm.  We treated ourselves to Top Pot Doughnuts on the way home.  And of course, Sarah got a pink one.

Melody, Sarah and Lilly in Princess dresses

Lilly had an early out day today.  DeeDee was watching Gus and went to get Lilly from school as well, and when Sarah got home from her appointment, she had a princess party.  Melody (DeeDee's daughter), Lilly and Sarah all got dressed up and had a bunch of fun playing and dancing together.

Lilly as a dancing princess

Thanks for all the love and support that everyone has given us.  We feel the love and support from you all often and it means a lot to us.

Sarah wants to dance too

Consolidation - Day 12

We had Sarah stay home from church today.  Even though we don't think her numbers are past the threshold, she has had a little bit of a cough and a runny nose.  Because of the levels of her hematocrit, she has some labs that they are set to draw Monday morning.  It is possible that she will have to get a blood transfusion as well.  She had a good day today and even got her church clothes on later in the day.  She loves to have a dress on.

Lilly has been asking to go to one of Sarah's appointments for the last few weeks.  I took Lilly with me to Sarah's appointment.  She had fun since it was just an infusion, and we didn't have to talk to doctors.  The main reason Lilly wanted to go was that the clinic has a wall with a bunch of PEZ dispensers on it.  Lilly loves the PEZ after she got her first one when we were in UT.  Her favorite was a pink panther one, while Sarah's is the Princess Leia one.  We grabbed some Slurpee's on the way home.  Lilly thought it was a great outing.

We are done with Sarah's four a week appointments for a couple of weeks and we are done with Sarah's back pokes for 6 weeks or so.  That means we don't have to starve her for any appointments any time soon.  We are grateful for that.  She hasn't really lost her appetite, but she has reduced the amount that she eats at dinner.

Thank you for all the support and love that we receive.  It helps to lift our spirits.

Gus Walking - Sarah's Consolidation day 10

Gus is starting to walk.  Well, take a few steps more like.  He stands up kind of steady and will walk 3-4 steps to get to you.  He loves to play this when he is in the right mode.  He has tons of excitement for doing new things and is lots of fun.  Though he is also breaking his molars, so he isn't always fun.....

Sarah's numbers are finally dropping and they are dropping fast.  Her hematocrit is approaching levels where she will need a blood transfusion.  She had labs today, and she will have some again tomorrow.  The won't transfuse until the numbers are below 20 and she is at 24.  He ANC is also dropping.  It is at 1100 (Seattle uses the full numbers rather than saying it in thousands).  That means she will probably be staying home from church.  She is getting more tired, and is starting to feel the chemo take affect.  From what the treatment plan looks like, we will be on a roller coaster like this for the next 6-8 months.

Thanks for all the thoughts and prayers.  We are doing well as a family.  We have more stress and it is nice to have the help and support that we have had during this time.

Sarah's Appointment, Day 8 - Consolidation

Sarah had an appointment today.  Her blood test were good, except her hematocrit is dropping.  We expected this since she is getting more tired.  She ANC number was still good, as was her platelets.  The will check the blood again on Friday.  It will allow us to see where she is at for the weekend.  She doesn't adjust well after she wakes up from the sedation for the back pokes (spinal tap).  I tried to give her some sprite shortly after she woke up.  She yelled at me and hit the sprite out of my hand on the floor.  I know why most of the floors in the hospital are not carpet and easy to clean.

Lilly has a homework assignment to create a poster for school on what she did this summer.  It was fun to watch her and Jess work through different ideas and place things on the poster.  Scrap-booking is something I know Jess likes to do and is good at, but she hasn't really had time to do any of it since we were married.  She enjoys being a mom and she is good at that too.  Lilly is putting things like the Zoo and swimming on the poster.  She is trying to find a picture of someone in the hospital as well, since that is truly the highlight of our summer.

Thanks again for all the support and thoughts and prayers.

Sarah's 4th Birthday

Sarah was so excited for her birthday this morning.  The first thing she said to me is "daddy, I am 4 now."  I was able to finish her cake before heading to work this morning.  It wasn't my best work on a cake but it was good enough for Sarah.

The finished cake

Sarah, with the help of Lilly, decided that she wanted a princess party.  So for Family Home Evening we let both girls wear their princess dress-ups.

Our two Princesses

Sarah got some dresses for her princess dolls, and some other toys.  She put on a great face for the camera when holding one of the toys.

What a face

Since everyone else had a picture, we had to include Gus, who loves to make a mess when eating.  He eats anything we give him.  He usually has multiple bites of Mom's and Dad's dinner each night, in addition to his own.  At least he is a good eater.

Gus

Sunday - 1UP

I figured it was about time to add some pictures again to the blog.  So there will be a few on this post.  Plus I have some funny stories.  Sarah's infusions on Saturday went well.  I went down and was with her in the clinic.  We had to wait a little but it was pretty painless otherwise.  Sarah was super good when they de-accessed her port.  She didn't even need me to hold her hand.  

Sarah's half smile

I took Lilly out to get Sarah's presents and to let Lilly get a present for Sarah.  We went to D.I. and Kmart.  At Kmart, we bought a six pack of the bottles of 7-up for a treat for Lilly.  When we got home she yells "Mom, we got some 1-ups."  Jess was very confused until I corrected Lilly, that we got some 7-ups.  Maybe she plays a few to many video games.  :)

Lilly's crazy face

Sarah was able to go to church today.  It was good.  We had dones of comments about people praying for her and us.  We are grateful for each one.  We have felt the prayers and know that they have helped us get through this time.  Sarah got a huge stack of birthday wishes.  She loved going through them and seeing all the pictures that others in the primary made for her.

Best of Friends

During church I when to the kitchen to get Gus's bottle warmed up to feed him.  As I was putting the bottle in the microwave, it fell.  I caught it but not before half of it ended up on my pants and the floor.  I had to race home and change my pants.  At least it wasn't right before and interview with the Bishop (My father will understand that).

Gus with the play kitchen

I have always been the cake maker in the family and am making one for Sarah's birthday.  I had the cakes baked and in the freezer, so they are easier to frost (a secret from Grandma Mc).  I made up the frosting.  Sarah wanted it pink, so I found the food coloring, only to find out we were out of red.  Amazon Fresh is coming in the morning, so I added it to our order and will finish up the cake before I leave for work.

Lilly and Gus

Thank you all for the thoughts and prayers.  We are grateful to all those who have reached out and sent letters or phone calls, and to those that have served us through cleaning or making meals.  We have felt the love of all of you.

Sarah and Jess

Friday - 16 Sep 2011

It is the end of a long week, but not quite.  Sarah still has an appointment tomorrow.  It is a short one (90min) but still requires us to go to the clinic.  Lilly wants to come along.  She got a pez dispenser while we were in UT and she was told that the clinic has a wall of pez dispensers.  She wants to go see them.  Since most of Sarah's appointments are during school time, this might be one of the few times she is able to go.

Gus is trying to walk everywhere.  He loves to stand in front of the toy kitchen and pull things out of the sink.  He pulls himself up on his stroller because he wants to always go.  He is an active kid.

We are so grateful for all the support that we have been given.  It is so nice to have a meal brought or have Jess just be able to take one out of the freezer.  We have gotten a number of cards and people telling us that they are thinking of us.  It helps our spirits and helps us to stay positive.  Thank you so much.

Thursday - 15 Sep 2011

I have trouble coming up with different ways to put how Sarah is doing.  When people ask, I usually say, she is doing good.  She has remission but that doesn't change the treatment.  She has been getting infusions the last couple of days.  I was in the clinic with her for 6 hours yesterday, and Jess was there for a couple hours today. She has appointments for the next two days as well.  It is going to be a long two years...

She is having nausea due to the chemo medications that she is on.  We have her on Zofran to help, but this morning she wanted a soy nut butter sandwich for breakfast and about hurled after the first bite, since she hadn't taken her Zofran yet.  Hopefully the Zofran will continue to be enough for her.

Sarah's birthday has snuck up on us.  It is Monday.  Jess and I were talking about what she needs.  Her leukemia treatment overshadows any of her other needs.  We came up with a few things that we can get her.  She has asked for a cake with two front teeth.  Similar to the ones I made for Gus's birthday but she wants it pink.  

Tuesday - 13 Sep 2011 - Normal?

Someone asked the other day how things were going and I replied "normal."  I quickly realized that our live hasn't been normal for the past month or so.  Going to the hospital multiple times a week is not normal.  We have gotten used to the routine and it is becoming normal for us.  That probably isn't a good thing but it is our life for the next while.

Sarah's appointment went well.  Her numbers were amazing.  Her ANC was 3.6 which is normal.  Her hematocrit was a little low but just barely into the low region.  Her platelets were normal.  It was nice to have a good set of numbers.  We know that the will drop again multiple times over the next few years, so we need to celebrate when they are good.  We did find out that she will have a tablet that she will have to take daily for the next 2 weeks.  We hope we can teach her how to take a pill.  Hopefully she will do good with it.

If our live wasn't busy enough, Jess's teeth wanted some of the action.  Jess has had temporary front teeth for the past 12 months waiting for crowns.  Our dentist sent her to a gum specialist who says that her gums have some issue where they don't come down far enough on the front teeth (I don't know the technical terms here).  We had pushed back the procedure of getting that fixed due to her being pregnant and breast feeding Gus.  We just haven't had time where she could go and get a surgery with a week or so of recovery time.  Well, shortly before dinner, the temporary teeth decided they no longer wanted to be in the mouth and came off.  She called the dentist and he was able to put them back on early this morning (Wed).  But it is just something else in our busy lives.

We are grateful for all the support that we are given.  My work has been amazing about supporting us and helping us through this.  Our ward has given us great support as well.  I got an email from my mother today, letting us know that her ward is asking how Sarah is as well.  I am sure I left some people off but know that we are grateful for all those of you who are prayer and loving us.

Monday - 9/12/11 - Lilly's First Day of School

Monday was Lilly's first day of school.  She had a lot of fun and was excited for the whole ordeal.  Jess had packed her a lunch.  When Jess picked her up, her lunch was still in her bag.  When Jess asked what happened, Lilly told her that she just went to lunch with her class and ate in the lunchroom.  She had grilled cheese.  We had to talk to her about how careful she needs to be so that she doesn't eat something with egg.

I also wanted to clarify Sarah's schedule a little since I had a few people asking.  Sarah has an appointment every day for the rest of the week.  On Tuesday, she meets with her doctors and she has a spinal tap.  Here in Seattle Children's, they do the spinal tap right in the oncology clinic.  Her doctor's appointment is at 10:30 and the appointment for the spinal tap is 1:00 pm.   On Wednesday, Sarah has a long infusion appointment.  She goes and gets 2 drugs through the IV and 4 hours of fluids.  On Thursday, Friday, and Saturday, she has shorter infusion appointments.  She is only getting one drug and they don't need to have her on the fluids as long.  It should be an interesting week for the schedule.  Luckily Lilly is in school and it makes it easy to find a sitter or to take Gus with Jess.  Jess and I are still planning on both going for the appointments when Sarah sees the doctor, but are going to split who takes her to the infusion appointments.

Thanks for all the support and love that you have shown us.

Sunday - 9/11/11

It has been 10 years since the fall of the trade center towers in New York City.  I look back over the 10 years and have seen what has changed in my life.  I am married and have 3 children.  I have completed college and am working for a great company.  My family has had a number of challenges, like Sarah's Leukemia.  During stake conference today (it was a broadcast from Salt Lake City and Elder Holland and Elder Packer spoke), Elder Holland spoke about the Holy Ghost and how it can give us peace.  Even though we might be more aware of some of the terrorism that goes on in the world, we can find comfort and peace in the Gospel of Jesus Christ.  I am grateful for my testimony of the Savior and how I know that he is involved in our lives.  It allows to me to get up with confidence each day and face what ever challenges may come.  The knowledge that God has a plan for me and my family has helped me to not mourn for my daughter, but to walk forward with faith.

I was able to take Lilly shopping yesterday for her school supplies and take her to lunch.  We had a good time on our "daddy-daughter date."  It is crazy that I now have a child in school.  Next thing I know, she will be starting college.

We were all able to go to stake conference today.  It was nice to not have leave Sarah at home.  A number of people were glad to see Sarah.  She was excited to see people too.  Hopefully her numbers will continue to stay high through the next round of treatment.

I forgot to list her ANC number from Friday.  It was 1.4.  It was almost normal and means that she has cells to be able to fight off sickness.  It means that she can go places too.  Jess is talking about going to the Zoo with her tomorrow after Lilly is dropped off at school.

Friday - 09/09/11 - Remission

So we got the results back from the bone marrow test from day 29 of Induction.  The smear (someone looking at it under the microscope) can back negative or they couldn't see any cancer cells.  The machine also came back as negative, where they couldn't see any cancer cells.  That means that Sarah is officially in remission.  That means that she is a rapid responder to the therapy.  Unfortunately, it doesn't change the fact that she still has two years of treatment left.  We know that prayers and fasting helped to get Sarah where she is.  She was a high risk ALL diagnosed, and she is in remission after induction.  We think she is doing well.

Well, most of the time the good news comes with some not so good news.  The doctors here in Seattle feel like they should still treat Sarah as CNS positive.  What that would mean is that she would go through two rounds of Delayed Intensification rather than one in the coming years as well as going through a cranial radiation treatment.  I threw the fellow a curve, when I asked what the risks were if we decided against treating her as CNS positive.  You could tell it was the first time that someone had asked that.  We don't know what is best for Sarah and will pray about it.  We have time to decide as the treatment is the same for both paths.

We start Sarah on consolidation next week.  It is a different set of medications as well as a different schedule.  So next week, we will be at the clinic everyday from Tues through Saturday.  Tuesday will be Sarah's spinal tap and weekly appointment with the doctors.  Wednesday will be two drugs through the IV.  One they need to hydrate her, so we plan on spending ~6 hours in the clinic for that.  Thursday through Saturday will be about 90 minutes in the clinic and she only gets one medicine pushed through the IV.  Consolidation is a 64 day round and we do this 4 day medicine twice during it.  In the coming days, I will try to list out the medications that she will be getting and lay out the schedule more.

Thanks for you continued prayers and support.  We feel the love that you have for us.  We are grateful for all those who reach out and help from providing meals or watching the kids.

Thursday - 9/8/11 - Lilly's School

Thursday was a quiet day for us.  Jess was able to go over to Lilly's school (Broadview) and meet the office and the teacher.  Her teacher is Mrs. Fredicks.  She seems like a really nice teacher.  Jess tells me that she had cancer 20 years ago.  She told Jess that she would help out any way she could.  If she needed to stay after school with Lilly or even take Lilly home, she would do it.  What a blessing that the Lord directed us to have an understanding teacher.  The schools also seems to understand the severity of Lilly's allergies.  Jess talked to the Nurse who has been a school nurse for a while and understands how things work.  We found out that the school won't just give Lilly Benedryl.  If she has an allergic reaction, they will give the Epi-Pen and call the paramedics.  While this might be overkill in some situations, I understand where the school is coming from and I am glad that they are trying to be more conservative.

Sarah has her appointment this morning (Friday).  I will try and get a post up early tomorrow with what we learn.

Sarah's quote of the day "Leukemia is very very yuk".  :)

Wednesday - 7 Sep 2011

I watched Sarah and Gus this morning while Jess took Lilly to the school district offices to get her registered.  We are still a little worried about how the environment is due to Lilly's Allergies.  We are praying that the teacher and school will be understanding and work with us to make sure that Lilly is safe.  I am beginning to feel old, in that I have a child who is starting school.  Next thing I know, Lilly will be graduating high school and leaving the house.

Gus is climbing up on everything.  He is ready to be walking.  Jess and I are not ready for that yet.  We are constantly finding him where he shouldn't be.  He is fast it getting around too.  At least we don't have stairs in our current home.

Sarah and Lilly play really well together.  I know that Sarah is going to miss Lilly when she is at school.  Hopefully Lilly can teach Sarah what she learned in school each day.  My brother Aaron did that for me when I was younger.  I know that it gave me a head start in school.  God is truly in our lives.  He puts us in families where we each grow off each other.  We help each other to reach our potential.  He also gives us people around us to help to grow and he gives us opportunities to become like him.  I am glad that I know that I will be with my family forever.  I love them very much.

Thank you for all the support that you have given my family.  We are very appreciative of all the love, thoughts and prayers that have been expressed on our behalf.  It means a lot to us.

Tuesday - 6 Sep 2011

My first day back in the office was Tuesday.  Jess was with the kids alone at home.  She got a lot done.  She talked to the clinic to see if Sarah needed any labs early this week.  They said that she probably didn't need to have any.  We won't know any further details until Friday then.  Sarah is in good spirits and is happy to be home.  We all are still adjusting to getting back on schedule here at home.

Jess is getting Lilly registered in school.  We were trying to get Lilly into a shoreline school but there wasn't enough room.  Because of Sarah's Leukemia, we hadn't done what we needed to in order to get Lilly registered for the local school.  Jess called and got the information she needed but has to go downtown and register Lilly in person.  Lilly will probably start school on Monday, even though the first day of school is today.  That is the way life goes sometimes.

Labor Day 2011

It was nice not having to go to work after driving home on Saturday.   It was nice to just be at home with the kids.  Unfortunately that means that I have a lot of work ahead of me this week to catch up.  I think I on here that the clinic here couldn't get Sarah in until Friday.  I guess that the appointment will be one where we talk about how to treat Sarah.  We need to make a decision on CNS positive or negative.  Hopefully with that being a major topic, it means that Sarah was a rapid responder.  I did forget to mention that when I picked up paperwork on Friday that I tried to see the results of the bone marrow.  The machine didn't come back yet, but the smear under the microscope didn't show any blast cells (cancer cells).  That is a good sign.

So I also learned some more about what a blast cell is yesterday.  ALL, is a cancer of the lymphocytes (white blood cells) and the cancer cells are called lymphoblasts.  So when the doctors are referring to blast cells, they are referring to the cancer cells.  I am sure that the doctors had told that to us early on, but it didn't stick in my head.

Thanks for all the love and support.  We feel the prayers and the love you have for us.

Sunday and some thoughts

It was nice to be home on Sunday.  All of the kids spent time playing with toys that they hadn't seen for a month.  Gus's Cars toy that he got for his birthday was no longer making sounds.  I decided to put on my fix it hat and got it working.  One of the wires connecting the speakers had been pulled off.  I had to get out my soldering iron and solder it back one.  It has been years since I soldered anything.  It wasn't pretty but it seemed to do the job.

Jess went to church with Lilly and I stayed home with Sarah and Gus.  Jess enjoyed church and she was able to bear her testimony about how she knew that God is very involved in our lives.  He know what we are going through and he wants to help.  I was reading the introduction page of the Book of Mormon yesterday, and a phrase stuck out at me.  It said that Book of Mormon is to help people find peace in this life and Salvation in the life to come.  I was reminding of a quote from Emerson that says "That which we persist in doing becomes easier, not that the task itself has become easier, but that our ability to perform it has improved."  God won't take away our trials or make life without hardship, but he will give us peace.  That peace makes it easier to accomplish all of life's trials.  Jess and I have sure felt that while we are going through this trial with Sarah.  We also know that God sends angels to help buoy us up and help bring us peace.  We know that angels are seen and unseen.  Many of you have been God's angels through your service to our family.  We are extremely grateful for all that has been done.  We pray that God may return to you the thoughts and prayers that you have offered on our behalf as blessings and knowledge that God loves you too.  Thank you for all that you have done for us.