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.