Sarah's Cancer: Induction - Day 29 - Wednesday - Clinic

Today was the last day for clinic here in Utah.  It was nice to be able to go and not have to worry about having her sit for her chemo meds.  We had given her some soda as the last liquid she could have before the surgery.  It helped that she had more sugar in her system before the surgery.  However, she was a mess after she woke up.  She wouldn't calm down or drink or eat.  She cried and yelled at us.  After she woke up she was another 30 minutes in the recovery room as they finished taking vitals and de-accessed her port.  I had to carry her mostly crying to the car, where she picked up the cup of soda from our ride up and threw it.  She threw it in the car but it only really got the floor of the car.  We got her in her car seat and she finally started to calm down and she drank the chocolate milk, which got her calmed down.  I sure hope she isn't this way every time.

Sarah's Cancer: Induction - Day 28 - Tuesday

We got some good news today.  Well, we tend to think it is good.  Sarah's labs showed us some good numbers.  Her ANC was .1 after being 0.0 for the past week.  Her hematocrit numbers were a little low.  But the number that got us excited was her platelets.  They were at 163.  She hasn't had a transfusion of platelets in 2 weeks, and all the other labs have shown her in the 60's.   In our non medical opinion, we think it is great, but it will be nice to see what the doctor's think tomorrow.  Tomorrow is the big day when they take the bone marrow and we find out how her bone marrow is responding to the treatment.  Of course, it will take a while to find out the results even though the surgery is tomorrow.

She had steak twice today (lunch and dinner) and is eating better.  Tomorrow will be rough since her appointment for the surgery isn't until 2pm and she has to stay NPO (no food from midnight and no drink 4 hrs before).  She still gets scared of the surgery but she has done so well.  Perhaps at the end of the treatment, she won't have any problem with needles and surgery.

We are grateful for the thoughts and prayers.  Please say an extra prayers that Sarah's bone marrow numbers are good tomorrow.

Sarah's Cancer: Induction - Day 27 - Monday

Sarah did well today.  She wanted to come upstairs a couple of times today.  Her home health-care nurse came today and took blood for labs.  We hope the numbers show some improvement in the ANC numbers, but it probably won't.  It is good to see Sarah happy and wanting to do more things.  She has been good about getting her mask on when she goes upstairs.

Our plan is to leave this coming weekend.  We have been grateful to my parents who have let us interrupt their lives for so long, and commandeered their basement.  We have relied on them a lot to watch the kids so that Jess and I are able to go up to the hospital with Sarah together.  It will be good to get back into our home in Seattle.  I think all of us are missing it.  

We are grateful for the prayers and support.  I am bouyed up by all of those who have us in their thoughts and prayers.  Thank you very much.

Sarah's Cancer: Induction - Day 26 - Sunday

Today was a long day.  There was a lot that happened today.  Sarah had her ups and downs.  She went on a walk with Jess when the rest of us were at Stake Conference.  She came upstairs during Gus's presents, after getting a 2 hour nap.  It took her a while to go to sleep tonight, but she is doing good.

Sarah playing with one of Gus's new toys.

I have been tired today as well.  There was a big storm yesterday, and it knocked the power out for ~30 minutes or so.  There was thunder and lightning, which woke up Sarah a couple of times.  After the power came back on, we found out that Annika's apartment in the basement had flooded.  She is on the other side of the house from where we are staying the basement.  My father, mother, Mary Ann and I were up until 2am using the shop vac to pull up the water, pulling up the carpet and getting rid of the wet pad underneath.  It seems like these sort of things happen on Saturday evenings more than any other time of the week.

Stake Conference was today for my parent's stake.  Elder Richard G. Scott came down from Salt Lake and presided over the conference.  Jess was able to go to the adult session of the conference last night.  I went to the general session today in the Alpine Tabernacle (I love that building).  It was really good.  One of the themes that I got out of conference is the need for us to be committed to action.  When we get counsel from the Lord or from our priesthood leaders and we don't act on it, we lose some of our faith and our commitment to the gospel.  It is only through action that we can keep the Holy Ghost with us and be guided to what the Lord has in store for us.

Gus's cakes

One of Gus's new toys

We celebrated Gus's birthday today.  He will be one on Wednesday, but it is easier to have it on the weekend for people to make it.  He got a few toys and clothes.  One of our traditions is that on the first birthday, the child can have at the birthday cake.  Well neither of our girls did much to their cakes, but Gus dove in and had handfuls of frosting.  He would lick it off his hand.  It was funny and I am sure he liked it a lot.

Gus chowing down on the cake

We love you all and are grateful for the love and support you give us.

Sarah's Cancer: Induction - Day 25 - Saturday

Today was a busy day for everyone.  Sarah came up with her mask and said hi to an old friend of Jessica's that stopped by.  She was happy most of the day but was still tired.  For breakfast, she wanted popcorn and steak.  Mom granted the request.  It might be hard to wean her back to eating what we fix.  A problem for another day.  :)

Lilly had a very busy day.  My parent's ward had a day of service this morning.  Lilly can with me and we went and help to renovate a deck for one of the ward members.  Lilly picked up, held screws, and helped dig holes.  She was a good helper.  After the service project and lunch, she went with me shopping for Gus's birthday (I can't believe that he will be a year on Wednesday).  When she got home, she went over to a neighbor's house and played until dinner.  She has a bunch of energy, and slept good tonight.

Gus is doing good too.  He is crawling around and pulling himself up on things.  He likes to stand but its quite ready to start walking.  He will get it soon enough.

Thanks for all the prayers and support.  We love you all.

Sarah's Cancer: Induction - Day 24 - Friday

Sarah was tired today.  That lead to her being a little more moody than usual.  It did lead to a couple of notable experiences.  The first was when Grandpa Butch came down to say hi.  She didn't want to see him.  He asked her if she was sad.  She said "I am not sad, I am cranky."  That was kind of the way the day went.  She has been eating on her tray that we bought for the car rides.  It works well when she is sitting on the couch.  For lunch, we brought her the wrong kind of soup and she pushed it off onto the floor.  She got the pillow that was on the floor covered in the soup.

She did get a little happier toward the end of the day.  Lilly and her played for a couple of hours before dinner.  At one point when I check on them, they were acting like they had babies in their blankets and we saving them from the top bunk or something.  The sure have fun together.  After I helped Sarah with dinner, I went upstairs to the kitchen and ate my dinner.  When I came back down (around 8pm), Sarah was fast asleep on the couch.  I got her into bed for the night.

Jess was able to get a little bit of a break this afternoon.  She went shopping with my mother.  It was fun and gave her a much needed break.

Thanks so much for the support and prayers.  We feel them and it lifts our spirits.

Sarah's Cancer: Induction - Day 23 - Thursday

Today has been a quiet day overall.  Sarah has had some cute moments.  When we were putting her to bed she say "Dad, you can sleep on the couch tonight."  There is a couch next to the bunk beds that the girls are sleeping in.  One of us was sleeping on the couch for the past few weeks.  She wanted Mom on the couch last week, but the past few days, she wants me on the couch.  It probably isn't the best for my back, but who said being a father was easy.

We had a little issue/scare when we got a call from the home health care company asking when the best time to deliver more antibiotics was.  They said that they had called the clinic and was told that they should refill the prescription of Sarah's antibiotic.  Since the doctor told us that we were stopping it, Sarah was de-accessed, so we don't have a way to give it to her anyways.  It turns out there was a misunderstanding at the clinic and it got sorted out after a phone call.  She is still off of it and doesn't have to be accessed until they need to get labs on Monday, but she won't stay accessed.

Thanks for all the love and support.

Sarah's Cancer: Induction - Day 22 - Wednesday - Clinic

Sarah is now done with her chemo drugs for induction.  She did great today, and we got good news.  They are stopping the IV antibiotic.  That means that Sarah got de-accessed today.  She no longer has a tube attached to her.  This will give her more freedom and allow her to take a real bath.  She was excited to lay on her tummy when she went to bed tonight.  I am sure for her it felt like a big step.

We also got down with clinic fast today.  She got her chemo meds all done before she went into surgery.  That meant that we could leave from the recovery, rather than head back to the clinic and have her get meds.  She also didn't need platelets today.  The number was 60, which is still lower than normal, but it meant that she didn't need the transfusion.  Her ANC was 0.0, so we still have to keep her contained to limit her exposure to sicknesses.

Thanks for all the support and love and prayers.  We feel them daily.

Sarah's Cancer: Induction - Day 21 - Tuesday

Today was a nice day for us.  Sarah was good and didn't have too many issues.  Her bald spots are becoming apparent.   Jess was combing out her hair today and she wanted to help.  I am including a picture of the amount of hair that we got out.  We got that much out twice today.  Her bald spots are mostly on the sides of her head, so she still looks full in the back and in the middle up top.  She is in good spirits about it.

Sarah's Hair on a pillow

One more thing.  She got a quilt from my aunt yesterday, and she loves it.  It is called an "I Spy" quilt.  There are squares of a number of different things, like princesses and fairies, etc.  It has a pink and purple border.  It is cute.  Sarah wanted to sleep with it tonight.  I started putting her sheet on her, thinking the quilt could go over the top, but she wouldn't have it.  She wanted just the quilt on her.

Sarah's Cancer: Induction - Day 20 - Monday

Sarah had a good day today.  She was happy and wanted to be doing things.  She asked after lunch if she could go outside.  Because of the antibiotic she is on, she isn't allowed to spend much time in the sun.  We decided to take her on a walk in the stroller.  That way she can be outside but not have to worry about the walking.  We just went around the block.  Lilly went with Sarah and I.  About half way around the block, Sarah pulled the sun cover on the stroller up so that she was in the shade.  It was fun to be out in the sun, even if it was a little hot.

Jess took Lilly and Gus down to see her parents today and met my parents and siblings at Shannon's new apartment at BYU.  This left Sarah and I home alone for Dinner and the evening.  She was getting cheeky about what she wanted for dinner.  After asking her what she wanted and giving her a bunch of options she says.  "Dad, you can surprise me ........... with noodle soup."  Noodle soup is ramen noodles.  She wanted to make cookies for her dessert.  Luckily, there was still some cookie dough in the fridge.  So she got on her mask and we went upstairs to make cookies.  I made cookie dough balls and she dropped them on the pan from about 6" up.  I had to rearrange them before putting them in the oven but she enjoyed being out of the basement even if for a little while.

Thanks for all the love and support.  We really appreciate it.

Sarah's Cancer: Induction - Day 19 - Sunday

I can tell as we get further in the treatment that it will be harder to remember what was normal before.  We are still giving antibiotics to Sarah every 8 hours.  This is an IV push (with a pump) over ~30 minutes.  It is something that is now mostly part of our routine but is very different from normal.  We have cause a whole lot more garbage than we did before.  From the syringes for the IV (5 in total, 2 Saline, 2 Heparin, and 1 for the antibiotic), to the gloves that we put on when we start and finish the IV, and the paper towels instead of towels for drying our hands (the doctors say that towels retain germs).  It is tough to keep someone protected.  Of course, it will be different after we get through the first couple of months and Sarah gets her healthy bone marrow back.  One of the doctors said to think of it like a garden that is all weeds (the leukemia).  The first couple of rounds of chemo wipe away all the weeds but there isn't anythings growing.  As we get further down the treatment, there will be good stuff growing and the chemo won't cause as much of a toll on the body.  In talking to a few other families that we met in the clinic, we hear that the first couple of months are the worst.  We hope that is the case with Sarah.  :)

Well we have picked up a bunch of hair today.  If you look close, you can see a few bald spots on Sarah's head.  She was tired today and had a hard day.  It wasn't anything in particular, but she whined a bunch and cried for various reasons throughout the day.  She does seem to have caught some sort of sickness on top of what she is already going through.  But, there were times when she was happy and laughing.  We hope we can get her through this and get her feeling well soon.

Jess made enchiladas for dinner.  Sarah said that she wanted them even though Jess thought she wouldn't eat them.  Well she loves her mom's cooking.  She ate a bunch, especially compared to the last few days.  It was good to see her eating well.

Thanks again for all the love and support.  We hope that the Lord blesses you all.

Sarah's Cancer: Induction - Day 18 - Saturday - Hair Everywhere

Sarah's hair is falling out.  I would just stroke the hair and get a bunch in my hand.  She still has a full head of hair but it probably isn't going to last long.  Poor kid.  She was smiling about it this evening.  She was even stroking her own hand through her hair and then wrapping it around the wii remote she had.  Then she would laugh because it looked silly.

Sarah was happy all day.  Through the morning she didn't feel very good.  She seemed sick and just wanted to lay down.  Jess gave her some Tylenol this afternoon and that caused her to perk up.  She was smiley and happy the rest of the day.  Unfortunately, Lilly and Gus are both sick now.  Hopefully they will get over it quick.  Neither one has had it that bad, but both have had coughs that have kept them up some.

Thanks again for all the prayers and support.

Sarah's Cancer: Induction - Day 17 - Friday

I am late in getting this post up.  Friday was a good calm day.  Sarah is experiencing more of what you think of when you think of someone getting chemo.  She is tired and looks sick.  We are finding more hair on her pillow and it is starting to look thin.  She has so much hair, that you can't tell a whole lot yet.

Jess and I decided that we needed to take a break and I took Jess out to dinner Friday Night.  We went to Rodizzo Grill and had a good time.  We were able to laugh and talk and just be together without a lot of distractions.  It was a good recharge for the both of us.  While we were gone, my parents watched our kids.  Grandpa Butch was in charge of taking care of Sarah and Sarah thought it was funny that grandpa took a little nap on the couch while she was eating dinner.  It has been good to be around family during this first month.

We are grateful for the support and prayers that everyone has given us.  Thanks for all the things that hae been done for us and on our behalf.

Sarah's Cancer: Induction - Day 16 - Thursday

I have now been to the clinic three times this week :(.  By mid-morning, Sarah had a low grade fever (between 99-100).  We called up to the clinic and they said to watch her for a hour and see how she does.  The fever subsided.  When then home health care nurse came, the fever was back at 100.3 F.  We called back up to the clinic and were a little more worried as Sarah hadn't been drinking very well, and her appetite was less.  They said to bring her in.  I packed up bags to stay overnight in the hospital and took Sarah up to the clinic.  When we got there, her temperature was 37.9 C (100.2 F).  They took some blood to run cultures and to get numbers.  Then they started her on some fluids.  The numbers came back OK and expected.  It didn't look like she was dehydrated or anything.  Her sodium was a little low but nothing to be concerned about.  The fever wasn't high enough for them to do anything more than we are doing at home (giving the fortraz antibiotic).  The doc even said it is kind of pointless for Sarah to be in the hospital just to get the same medication that she is getting at home.  So they sent us home.  Sarah was disappointed when we got put in a room in the clinic that we weren't in a room with a "bendy" bed.  She was happy to come home.

Thanks for all the love and support.

Sarah's Cancer: Induction - Day 15 - Wednesday - Clinic

One thing I forgot to mention yesterday was that we decided to wash Sarah's hair.  It was starting to smell.  We also cut a few inches off of it since there were knots at the ends.  We laid her on some towels to prop her up and laid her head over a bowl and washed it there.  It wasn't the best wash but it was much better than before.  She did have a bunch of hair come out with the wash.  It is also looking thinner.  It looks like she will probably lose it before too long.

Sarah doesn't like to get water in her ears

We had an interesting day in clinic.  The doctor came in and talked to us about how they determine whether someone is CNS (Central Nervous System) positive or not.  When they do a spinal tap and pull some fluid out to test, there is usually contamination with blood vessels that surround the spinal column.  So they take a ratio of blast cells verses white blood cells in both the spinal fluid and in the blood.  If the ratio in the spinal fluid is more that 2x that of the blood, they say that a person is CNS positive.  Well, Sarah's ratio is 2.007x.  This means technically she would be classified as CNS positive.  However, the ratios are estimates at best.  In addition, Sarah went from 95K white blood cells to 44K white blood cells over night.  The 2.007 number is using the 44K number, which was taken around the same time as the spinal fluid, but not necessarily at exactly same time.  Since these numbers are estimates as well, is she CNS positive or not?  Well, right now she is classified as a CNS2 or CNS-undetermined.  This is the grey area.  So what does this matter?  Well, it has a decent impact on treatment.  If she is CNS positive that means she automatically gets 2 rounds of each of the intensive rounds of chemo during maintenance.  It also means that they do cranial radiation treatments as well.  This isn't the best of news.  It also means that we may have to make a big decision about how we treat her when we finish consolidation which is the round after induction.  For the short term, it means that she will have surgery and get a spinal tap every week during induction.  If they do find more blast cells in the spinal fluid, that means that she is CNS positive and we need to go down that treatment route.  If there are no more blast cells and she responds well to treatment during induction, the decision to treat her as CNS positive will have a greater impact to her treatment plan, as she will do 2 rounds of each the intensive rounds during maintenance instead of 1 (she only does 1 round if she is a rapid responder).  We are learning more and more everytime we visit the clinic.  Things like this help us realize that that we have a long way to go in Sarah's treatment.

After Sarah's surgery today, she was in the recovery room.  Even though we told her she could eat, she said that she wanted to wait until she got home to eat the Cheetos that she had.  She waited until we got up to the clinic where she still needed to get her chemo meds.  Then she ate the whole bag.  It was the big snack bag.

Sarah is off the DEX and the doctor said probably just a week left of the IV antibiotics.  Then she will only be accessed to get labs and get her chemo.

We love you all and are grateful for the support and prayers.  We feel them and they help sustain us.  

Sarah's Cancer: Induction - Day 14 - Tuesday

Today is Sarah's last day to take her steroid.  Hopefully that means I won't get told to leave and "go to work" or "go upstairs".  She has been calm about it the past couple of days.  The last time I got yelled at was Sunday.  I am looking forward to less of the mood swings with Sarah.

Anna (our cousin) was staying out our house in Seattle for a few weeks before she moved to southern Utah.  She brought our Wii from home and a few games.  Lilly was especially glad because that meant that she had Lego Batman and Family Game Night to play.  We decided to add another game for her and bought her Toy Story 3.  She was excited and played this a little with her dad and then by herself.  Sarah watched on for a while.  It was fun.

We got results on Sarah's blood tests (CBC) yesterday.  Her ANC number was .1 and the platelets were 25.  That means that she will probably need another transfusion of platelets before her surgery tomorrow.  For her surgery, she only has to do one of the two procedures that they did last week, and I can't remember.  There is also a slight possibility that she may not have to have the surgery at all if her numbers from last week were good.  They said that it takes a week to get them back so we don't know what they are.  That means that we have to have her go up to the hospital fasting.

She has been funny with food and wanting to eat a lot.  Around 2, I asked her what she wanted for lunch (even though it was the third meal of the day).  She told me she wanted steak.  I told her we were planning on having that for dinner.  She then said that she wanted a soy-nut butter sandwich and a quesadilla.  She usually only eats one or the other for lunch.  I prepared it and brought it down and she complained that she wanted more quesadilla.  Oh well.  We love her.

Thanks for all the prayers and support.  Sarah loves the cards that have been sent.

Sarah's Cancer: Induction - Day 13 - Monday

I had a thought just the other day, that I needed to remember things during the day to make sure to have something eventful in the blog post.  Well, I don't need to remember any little things today.  Jess noticed that it was hard to push the medicine through the IV this morning during the morning dose of antibiotics.  When the home health care nurse came around 11:30, nothing would come in or out of the IV.  She was unable to get the blood tests.  Sometimes a re-access will get the IV working again, so the nurse set things up.  We realized that we didn't have any of the numbing spray or cream to help numb up the skin where the port is.  Sarah was brave and we tried to re-access her anyways.  It took two pokes to get it in the port correctly but we still weren't getting anything from the IV.  We left her de-accessed, and I took Sarah up to the clinic at Primary Children's.  Sarah was nervous about the whole thing, but as soon as she was reaccessed, they were able to pull labs fine.  We were out of the clinic fast and headed home.

Sarah asked for tomato soup again this morning for breakfast but there wasn't any left over, so Jess told her that it was all gone.  She told Jess "Mom, you are going to need to go the store and get some more."  She relented and had cinnamon toast, chicken, and frozen blueberries for breakfast instead.

Sarah's Cancer: Induction - Day 12 - Sunday

Sarah has been ravenous today.  She has asked for food six times today, and has eaten most of the food that we have brought her.  She started off on a food kick this morning when Jess asked her what she wanted for breakfast.  She told Jess that she wanted tomato soup.  Jess tried to persuade her to standard breakfast fare, but she wanted tomato soup.

I have been told that she doesn't want me downstairs and to go a few times today, but she has also laid her head on my lap a couple of times too.

Jess reminded me that we need to record how Sarah thinks about her leukemia.  We have explained it and in her mind, she thinks that the leukemia is "bad guy blood" and she needs "good guy blood" to fight the "bad guy blood."  She has done really well with taking her medicines and doing what needs to be done.

We feel the prayers and support.  We are grateful for all of those who are praying for us.

Sarah's Cancer: Induction - Day 11

Saturday was the Alpine Days parade.  I took Lilly in the morning and we went down to the parade with my family.  It was fun to see the floats and we had a good time.  Lilly went on all the inflatable stations that  had at the park.  She loved the ones that she had to make her way through obstacles.  She had a lot of fun.  We got home at lunchtime and had a quiet rest of the day.

Sarah was good yesterday.  I did get a number of "dad, I don't want you here.  Go upstairs."  I know that it is because of the DEX that she is on.  We only have through Tuesday to give that to her.

Thanks for the prayers and support.  We love you all.

Sarah's Cancer: Induction - Day 10

There wasn't much to report about Friday with Sarah.  We got her numbers from the labs yesterday.  Her Hemoglobin was down a little but the platelets were good and her ANC was '.2'.  We know that the ANC number will flux while she is still on the low end, but to see it go up is still good.  We just know that it will probably stay low for the time being.

I took Lilly out for lunch to Macaroni Grill, her favorite place.  We stopped by Orem cemetery on the way home.  This is where my Grandpa and Grandma Blackham (Gus and Lulie) are buried.  Grandma Blackham passed away due to leukemia, even though it was a different type.  As I pondered on them, I realized that Grandma Blackham was going to be taking a special interested in Sarah.  She was going to be watching over her as a guardian angel.  Not only does Sarah have leukemia like she did, but Sarah shares a birthday with Grandma Blackham.  I was grateful to feel the presence of Grandma Blackham and the support she is giving from beyond the grave.  It is wonderful to have a knowledge of eternal families, and knowing that life doesn't end at death.

We are very grateful for all the support and love that we have received.  We are grateful for all those who pray for us.  We feel it.

Sarah's Cancer: Induction - Day 9

I am going to try to update the blog at least daily, while we are here in Utah and when we go through major steps in Sarah's treatment.  There isn't a lot to tell about today.  The home health-care nurse came and took labs around noon.  Sarah has been good about staying quarantined.  She has been tired today, but that is expected due to the chemo drugs.

One funny story to let you know that Sarah is still herself.  Jess went to the store this afternoon while Sarah was taking a nap.  She woke up and called for Mom.  I told her that she was at the store.  She turned over and laid back down.  15 minutes later, she calls me and says "dad you sound like mom".  She wanted me to talk like mom, so I did and she smiled.  After a few questions she says, "OK, now you can be dad."  She makes me laugh sometimes.

Sarah's Cancer: Induction - Day 8 - Clinic Day

Well most of our day was spent up at Primary Children's.  We needed to be up for an appointment with the oncology clinic at 8:30am.  We had to wake up Sarah to leave around 7:15 from my parents.  We got there on time but there was a bunch of confusion going on.  They had to take labs from Sarah again.  Her white blood cell count was .1 which means she is almost at the bottom.  Unfortunately that means the numbers will probably stay there for the month.  She got a platelet transfusion before going into surgery.  Surgery went well, except it took a long time for them to call us back.  When they did call us back, Sarah was still asleep.  She had started to take a nap before the surgery, so we think that she woke up from the anaesthesia and just went to sleep for a nap.  They nurses weren't sure but when we told her she had to wake up, she did just like it was from a nap.  After the surgery, we went back up to the clinic and she had her chemo drugs given to her.  We got back home shortly after 4pm.

We have learned a little more about what will happen week to week for induction.  It looks like she will probably be on the fortraz (the antibiotic given through IV) throughout induction.  That means that she won't be de-accessed (removing the needle from the port) through out the month.  There is a chance, that if she can get her ANC number above .5 that she can stop it, but that isn't very likely.  Also, she is scheduled to get another spinal tap next week.  There is a possibility that she won't get it if her numbers are good from the tap today.  However, the clinic told us to come next week expecting that she will get it.  That means she needs to be without food since the night before and only clear liquids until 4 hours before the surgery.  Today after her surgery, she jumped on her juice and devoured a roll and yogurt.  She was hungry.

Thanks again for all the prayers and support and offers for help.  We appreciate all that people are doing for us.

Sarah's Cancer: Induction - Day 7

I figured since all the papers list the activities that happen based of the days of the chemo rounds, it might be easier to put that in the title.  So today was day 7 of Sarah's induction treatment.  That means that we are heading back to the hospital tomorrow to get her next dose of chemo, well we hope.  There is still a lot that is unknown.  When Jess called and get the appointment at the clinic, they asked who came and talked to us while we were in the hospital.  When we said that nobody did, they said that something must have slipped through the cracks and they were so sorry.  That means that we will find out exactly what happens when get there in the morning.  We have to be to the clinic at 8:30 in the morning.  The plan is to give her the chemo meds, and then platelets in preparation for the surgery around 11:30ish.  The surgery will be the spinal tap and the bone marrow biopsy.  It should be a quick one.

Sarah's numbers were down a little today.  Her ANC number was .2.  We had hoped that they would go up but in talking with the doctor, I have a feeling that while she is on the steroid (DEX), her numbers will stay down.  Luckily, we are half way through that.  We would love to see her "de-accessed" but we don't think it will happen because the papers say that she gets the antibiotic until her numbers are above 500.  Again, we will see what happens tomorrow.

Sarah had a good day today.  She was more lively and we saw glimpses of herself.  Lilly and Tonya went on a picnic for lunch and when Sarah heard, she adamantly wanted to go.  I told her we could have a picnic in her room and that satisfied her.  She has had a few mood swings, like before dinner, she didn't want me around at all.  She kept telling me "Dad, you go upstairs."  I never thought my 3yr would be telling me to go away like that.

Thanks again for the prayers and support.  We feel it and are grateful.

Sarah's Cancer: First full day at home.

Yesterday was Sarah's first full day at home.  She had a decent day.  She found it hard that she had to stay downstairs in her room, but she did get used to it.  Her siblings were excited to have her home and Lilly spent a lot of time playing with her and watching movies with her.  It was nice to sleep on decent mattresses.

Two things of note.  We had a nurse who came and took blood tests from Sarah to see what her numbers were.  We were waiting for a call back that afternoon or evening to let us know of the numbers but we still haven't heard what they were.  Second, I (Nate) felt sick yesterday so I have tried to stay away from Sarah and wear a mask when I need to help.  Hopefully, we can keep her healthy.  She needs to have a higher ANC number to be able to do the next dose of chemo.  If not they will wait on giving her the next dose.

Thanks again for all the prayers and support.

Sarah's Cancer: To Grandmother's House Go

We are home!!!  Well, we are at my parents house.  It is a big step for us and a good step in the right direction.  More about that in a bit.

I attended church at my parent's ward today.  It was a good set of meetings.  In Elder's quorum, we talked a lot about how to make sure there is love at home.  We talked about focusing on the right priorities.  I mentioned how a major event like this causes us to only focus on the most important things in life.  Two other thoughts out of the lesson that I want to share.  First, there was an example of a jar and rocks.  If we fill a jar with big rocks and then pea size rocks and then sand, you can fit a whole lot more in the jar.  If we start filling the jar with sand, we can't fit all the important things in our life (the big rocks).  Second, often when we tell people we love them, it can be come just a habit and there isn't feeling behind it.  If we say "I love you because ..." and fill in a reason, then it becomes more meaningful to those involved.

This morning Jess said that Sarah looked like a vampire.  When I got there in the early afternoon she didn't look much better.  She had dark rings around her eyes and was a little pale.  Her white blood cell count was .8 (normal: 6.0-17.0) and her ANC number was .3(normal: 1.5-8.5).  They gave her a transfusion of platelets and of red blood cells.  This helped tremendously.  Her dark rings went away and she livened up.  We got everything ready and were out of the hospital around 6:30pm.

Even though we are "home", things aren't easy.  She still has to take a antibiotic every 8 hours via an IV, so she still has the IV in her port.  A home medical company came out tonight and taught us how to give her the infusion of the medicine.  She needs to take it every 8 hours through Wednesday.  Hopefully on Wednesday, they can "de-access" her (remove the needle from the port).  We also have to keep the area that she lives in really clean while her numbers are low.  This means that she has a bathroom to herself that we clean with bleach and she is quarantined to the basement (where we are staying).  The number that we are watching is the ANC number.  In order for her to have more freedom, it needs to be above .5 at minimum, .75 is much better.  This number represents how well she can fight off infection.  The lower it goes (it goes low due to the chemo) the less she can fight off sicknesses herself.

Grandma and Grandpa has done a great job in making our area more livable, since we will be there through the month of August.  The girls were previously sleeping on air mattresses in the theater room.  Grandma and Grandpa talked to members of the ward and the found a set of bunk beds that the girls are now sleeping on.  There are really excited for this, since we have talked about getting bunk beds for them for a little while.  It was funny to watch them when Sarah came home.  Lilly wanted to show her the bunk beds and they sat and talked like old friends that hadn't seen each other in years.  It was touching to see what good friends my two daughters are.

One more story.  At lunchtime before I left to go up to the hospital, my parents, Shannon, I and Lilly were in the kitchen talking about Gus.  Grandpa Butch (Udell) mentioned that Gus and pushed the bottle against his face and got milk all over it.  I mentioned that when Gus was done with his bottle this morning, he grabbed it out of my hands and threw it to the floor.  We laughed at that and then Lilly said "That's my boy".  It was pretty funny.

I wanted to thank each of you that fasted for us and those that are praying for us.  My heart has been full today as I have felt the love and support from each of you.  We are blessed to have such great friends and family.

Sarah's Cancer: Day 5

Today was a good day for Sarah.  She slept really well through the night.  She ate more today.  She has also been happier.  We were able to go over the play area here in the ICS unit.  She had some visitors that she was glad to play with.  She is still taking the second antibiotic but they haven't seen any infection in the blood cultures.  That is always good.

She was given the PEG-ASP today.  They watched close as the drug as a fairly high allergy rate.  She did well and doesn't appear to have any allergic reactions.

The plan is still to go home sometime tomorrow.  The nurse thinks early afternoon, but we will see.  We have had a good set of hospital staff taking care of her.  They all say how cute she is and she has made friends with most of them.  We are grateful for their watchful care.

We are grateful for all those who are praying for Sarah and for all the support.

Sarah's Cancer: Day 4 - with a thought or two

Today has been a rough day for Sarah.  She hasn't wanted to eat and she has hit some of the mood swings that are side effects of some of the drugs.  I spent the morning at my parents playing with Lilly and taking care of Gus.  Jess and I are swapping time at the hospital and at home.  We know that not only is it a trying time for us, but also for Lilly and Gus as Jess and I are giving Sarah much more attention.

Sarah hasn't been herself today as well.  She has been somewhat distant.  Jess said that it is like right before Sarah gets sick.  This is probably the case, because around 8pm tonight she was running a fever or 37.9 C (~102).  This is especially bad while her white blood cells are low.  They paged the resident on-call.  They temperature stayed for 30-45 minutes before starting to drop.  The resident ordered up a second antibiotic to help cover the possibility of a different type of infection.  There are also going to hook up the pulse-ox monitor for the night to watch her heartbeat.  She has been sleeping good and hopefully will sleep through the night.

I have a few thoughts I wanted to put down as well.  We have looked back and thought about a number of things that happened with Sarah before she was diagnosed.  She has always had a hard time about kicking sicknesses, especially her ear infections.  The thought has come, "Well, did she have leukemia all along?"  The answer is maybe.  I don't know.  I have never been contented with leaving a question by just looking at it from one angle, so I ask myself  a few more questions "What would have happened if it was diagnosed sooner?" and "Would it matter if she did or didn't have leukemia before?".  I am going to answer the latter questions first, or at least how I look at it.  I don't think it would matter if she had it before.  While it might have caused some times in Sarah's life to be easier, she is only 3.  She still is our Sarah and the leukemia won't change that.  We saw some major changes when she got tubes in her ears, and knew that the tubes helped her, so that wouldn't have changed.  The first question about timing is a little harder for me to dissect and get some good answers.  However, I know that the Lord has a time for everything to occur.  If we weren't in Utah, could we have dropped everything and both Jess and I be at the hospital for the first 24 hours?  Probably, but we would have been more worried.  We have a number of friends in Seattle that would have helped, but we wouldn't have had the family support.  It is summer time, which means we all have a little more free time.  Lilly is not yet in school, so we don't have to deal with that yet.  Looking back, there isn't a better or a worse time.  So for me, it doesn't really matter that it wasn't caught earlier.  It isn't affecting the outcome.  We still have to go through 3 years or treatment.  One of the drugs has become easier to take over the last year or so (IV instead of 3 shots in the muscles), so maybe there is benefits to having it diagnosed now.  I think though when it comes down to it, I know that the Lord has a time for everything and now is the time for us to have this trial.

Thanks again for the support and the prayers.  Remember, that if you would like to come and visit us in the hospital, give us a call first.  Both of us have our cells phones on and they get good coverage in her room.

Sarah's Cancer: Pictures Day 3

I figured I should add a couple of pictures that I have taken over the past few days.

Sarah's first set of chemo

Sarah and her cute smile

Sarah loves to play with her dolls

Sarah loves Spiderman

Sarah posing for the picture

Sarah's Cancer: Day 3

Sarah has had a good day today.  She has been active and happy most of the day.  She had her sister visit her with Shannon and Grandma Pheobe.  They took her down to the playroom and she had a lot of fun playing with the toys, even though she had the IV pole following her around.  Her demeanor is beginning to return to normal.  We are grateful for the quiet day.

After talking to the Oncologist, we have more information about how the treatment will happen.  We have a good idea of the next 30 days and what will happen.  It looks like Sarah will get the PEG-ASP on Saturday and we might be able to go home on Sunday depending on Sarah's counts.  Hopefully they will be good so that we can go home.  Then every Wednesday for August, we will be back up here at Primary Children's for Sarah's chemo therapy.  Next Wednesday (day 8) and the last Wednesday (day 29) she will have to go into surgery to get a bone marrow biopsy and a spinal tap.  She might need to get the biopsy on the Wednesday after next (day 15) depending on her numbers.  We need to be careful with her and make sure that she stays healthy.  If she gets a fever, she is going to have to be readmitted back into the hospital.

It looks like we probably won't be heading back home until after the first round of chemo.  It is possible that we can head home between day 15 and day 22, but that depends on how Sarah is doing.  We are blessed that Seattle also has a good program to help children with cancer.  We will have weekly or monthly visits to the hospital for the next 2.5 years.  We still need to ask about how Sarah's cancer will affect family vacations.  We have been tentatively planning a trip to Disneyland in October, but that has been put on hold for an unknown specified period of time.

Thank you to all for the love and support.

Sarah's Cancer: IV replacement

We had an eventful night last night.  At midnight, Sarah was due for a couple of medicines and to have blood drawn for labs.  She did fine for the medicines, but as the nurse was going to draw up the labs, she noticed blood on Sarah's shirt.  The IV line coming from Sarah's port had a Y connector in it.  This allows them to give drugs without having to remove the fluid bag that is giving her liquid.  They were only using one side of this connector and the other side had a cap on it.  The cap had fallen off and had leaked some blood out of it.  This also meant that there was some clotting in the tube in the port.  It was decided to replace the IV connected to the port.  We gave her some pain meds and had her lay down.  They pulled out the current IV, cleaned the site, numbed it with a spray and then put a new IV in.  Sarah did great during this portion, even though she had been crying before since she didn't know what was going on.  I had to wash the items that got blood on it since it was her boppy (a pillow) and her favorite small blanket.  Once the IV was replaced, Sarah went back to sleep quickly.  The nurse did have to give some medication to unclot the line and get it to flow again.   She has been good this morning and got some decent sleep.  I can't list all the blessings that I saw during this event.  I am grateful that the Lord is watching out for Sarah.  

Thanks for all the prayers and support.

Sarah's Cancer: End of Day 2

A couple more things I need to add tonight.

Sarah did really well with her first dose of chemo.  She hasn't had any nausea and even ate a good amount 30 minutes after she got her dose.  She hasn't really felt sick or anything.  I have noticed more stray hairs on the pillow.  She is currently sleeping really well, which is a little sad because they are going to come and disturb her in a few minutes.  She has labs that they need to draw for and some medicine to take orally.  Hopefully she can get back to sleep after quick.

One thing has been a little bit of a worry is that her blood pressure has been high this afternoon.  She was in pain and was crying, so that may have contributed to the issue.  They are checking it frequently and are giving her some medication to bring it down.

Thanks again for the support and prayers.

Sarah's Cancer: Nate's Thoughts

There as been a lot on my mind the past two days (you think?).  I wanted to take a step back and record some of my thoughts, or at least some of the things that I have thought about.

I am reminded about a post that my mother made during my sisters ordeal.  She talked about she dropped 90% of what was happening in her life and it didn't matter.  When I heard the news, I was in a meeting at work focused on Amazon Linux AMI and working toward the next release of it.  My first priority was making it to Utah.  Looking back, I can see how the experiences of my life, the examples of my father and mother, and my belief in our eternal family shaped what my priorities were.  I am surprised at the out pouring of support from the members of my team at work.  I knew I worked with amazing people, but my respect and love for them has grown.  I am grateful for those who are helping, and who have offered help.  Family, friends, co-workers, friends of friends and family, people who I don't know, have all reached out to help in this time of need.  It reaffirms my belief that all people are inherently good and want to help those in need.  I wish there was more that I needed help with as I know the joy that is gained from serving someone in need.

I have been reminded that the Lord works in our lives always.  We have seen miracles from an appointment opening up right away at Dr. Glade's to the airlines switching my flight without any hassle (and that it wasn't full) to many of the small ones that we aren't aware of.  I have been given a sense of peace and calm.  I know that the Lord is watching out for Sarah as well as for us.  While I have had a myriad of emotions, I haven't felt desperation or a deep sadness.  I only can attribute that to the faith that I have in the Lord.  I know that he has a plan for me and my family.  Whatever comes of this trial, the Lord has a reason for it.  I know that I will grow in leaning on him as I know that things are not in my control.

I also had a discussion with my father yesterday evening about how the Lord prepares us for such events.  Having gone through Shannon's (my sister) TBI, I have become more open the miracles that the Lord gives us each day.  I have also gained greater hope for what will come.  As my father and I talked, the story of Shadrach, Meshach, and Abednego came up.  They were facing the fiery furnace and there response was "I know the Lord will save us, but if not we will still believe".  How often to we approach trails in our lives and say, I will only believe the Lord's hand is in it if he does what I think is best.  The Lord knows what we need in our lives and sometimes it is not the miraculous healing or what we think is best in our life.  But if we have faith the Lord will help us to grow.  It reminded me of the decision that Jess and I made when moving to Washington.  Amazon was the last on our list of possibilities for work while I was interviewing. Looking at the different options that I had, Amazon wasn't the best financial choice or the best choice to be close to family.  But the Lord knew that we would grow and he needed us in Seattle.  We had faith and went with where the Lord wanted us, and we have been richly blessed.

Thank you again for all the love and support.

Sarah's Cancer: The plan

Sorry for the delay in the update.  I spent the morning at home and when I got the hospital, I have been helping with Sarah.  We just took a field trip to the playroom on the 3rd floor.  Sarah had to wear a mask but she enjoyed getting out of her room.  She didn't want to walk due to the pain in her back, so she got a wheelchair and used that to get her to and from the playroom.

So Jess got a visit from the oncologist this morning and we learned what the plan is for the next month.  We also got all the information on the drugs that Sarah will have to take.  I will split out the details to later in this post.  She falls into the high risk group because of her white blood cell count when she was admitted to the hospital.

The first round of treatment will last 29 days.  There are two portions.  First is induction, which is the set of drugs that go into her blood.  The second is Intrathecal, which are the drugs that get administered into the spine.  This started yesterday when she was under anaesthesia.  The found white blood cells in the spinal fluid yesterday so she will get more treatments to make sure they get all the cancer cells there as well.

She will get the chemo drugs later today in her port.  They will watch her in the hospital for at least 5 days, depending on how she responds to the medicine.  If she does well she can go home but needs to stay quarantined to the house.  She will be back on days 8, 15, 22, and 29 to have drugs administered.  She will have another shot in the spine on the 8th and 29th days.  If there are still white blood cells on the 8th day, she will also have a shot on the 15th day.  These will all be while she is under anaesthesia.

Thanks for all the support and love.

Details on the drugs below:

She will be on antinausea medicines to help during the chemo.  They will start on Zophen and if needed use Benedryl, Adivan, or Phenergan.  The drug the use for the spinal tap is Intrathecal Cytarabine (IT ARAC).  She will have Dexamethasone (DEX) for the first 14 days.  This will be taken by mouth 2x a day.  The drugs that will be administered during the chemo treatments are VinCRIStine (VCR), and DAUNOrubicon (DAUN).  The DAUN is the drug that will most likely cause her to lose her hair.  These will be given on days 1, 8, 15, and 22.  She also gets PEG-asparaginase (PEG-ASP) on either day 4, 5, or 6.  The plan is to give this on Sat.

There are side effects for each of the drugs.  VCR can cause problems walking and picking up toes.  She most likely will have leg pain, the day of the dose.  DEX can cause mood swings.  (fun for us, :( ).  To help with tummy issues, they are going to give her some Zantac.  DAUN can effect the heart, hence the Echo Cardiogram that she had yesterday.  PEG-ASP has the possibility of having an allergic reaction.

Sarah's Cancer: End of Day 1

It is crazy how much has happened in the last 24 hours.  I was in the airport 24 hours ago waiting to get on a flight to UT.  Jess was at my parents giving Sarah a blessing before taking her up at the hospital.  There was a lot of unknowns and a lot of confusion as to what was going to happen.  Now, we have a lot of hope.  Sarah has a 90-95% cure rate.  We still have a lot of unknowns as to what the schedule is like.  We know that we have a long road ahead.  There is a possibility of upto three years of treatment.  We are grateful for prayers and support.

Sarah successfully completed her surgery this afternoon.  She was taken to the O.R. at around 3pm and it took about 90 minutes or so before she was coming out of the anesthia.  We ended up getting the port for the central line.  It is a resivour thing that sits under the skin.  It allows them to put a needle thing on top of it and then she doesn't have have an IV in her when she is going through treatment.  The surgeon said that the surgery for this was successfully.  It only took him about 30 minutes to place it.  She got her lumbar puncture (spinal tap) done as well as the bone marrow biopsy.  

She did really well and has slept a lot since the surgery.   She was able to eat dinner of her macaroni and cheese and her favorite pink ice cream (strawberry).  After she ate she went back to sleep.  She has been complaining of her back bothering her.  We don't know if because of pain or just discomfort.  We have given her tylanol and oxycotin to try and relieve it for her.  We are hoping for it to calm her enough that she can get a good night sleep tonight.  That is what she really needs.

I am heading to my parents to get some sleep tonight and because Lilly says that she wants me to make scones in the morning for breakfast.  Jess is going to stay the night with her and hopefully it will be uneventful.

Thanks so much for all the prayers and support.  We can feel the love that others have been given.  We are in room 4407 at Primary Children's.  You are welcome to call if you like.  If you would like to visit, please call first.  We need to make sure that visitors are healthly as Sarah has a compromised immune system.  Also people should be aware that fresh flowers or plants or fresh fruits or vegatables are not allowed in the this unit of the hospital.  No latex balloons are allowed in the hospital.

Sarah's Cancer: Full Diagnosis

Still our smiley girl.

So we no have a confirmed diagnosis.  She has Pre-B ALL.  The leukemia is on the immature b-cells in the blood.  This is the most common and has a 95% cure rate according to some documentation that the social worker dropped off for us.  This gives us a lot of hope but it will be a long road to get through this.  We are grateful for the well wishes and the prayers on our behalf.  Thanks for the support.

Sarah sad from the needles

The medical numbers are as follows.  The white blood cell count was at 90,000 yesterday (normal is around 10,000).  Her numbers have dropped to 42,000.  Her platelet count yesterday was 15K and after the transfusion this morning, it is up at 77K.  They want it over 100K before they do the surgery today, so they are going to give her another transfusion of platelets.  The hemocrit numbers are at 21.9 (normal is 30+), so they are going to do a red cell transfusion as well.  Electrolytes, Sodium, Potassium, Magnesium numbers are all normal. Phospherus is at 4.1 (they are worried at anything over 6.0). Uric acid is 4.1 as well (over 5.0 is concerning).  So the numbers are encouraging.  

Thanks for the support.  We love you all.

Sarah's Cancer: Day 1

I am writing a post I never thought I would have to write. We found out yesterday that Sarah, our curly haired girl, has leukemia.  I am sitting in the hospital room at Primary Children's since Jess and the kids were in Utah.  We don't know a lot of details, yet.  She has been poked with needles a bunch of times, which is her favorite thing. :(  She has been a trooper.  She even said yesterday to the nurses that she likes needles.  {Story below}

Some of the medical things for those who know.  They are worried about Tumor Lysis Syndrome so they are taking blood out to see what the levels of electrolytes, potassium and uric acid.  The tests they did last night looked good and the levels were fine.  However, they have said that the Tumor Lysis Syndrome can still happen so they watch it carefully.

The Oncologist came in and talked about a what she thinks it is.  She took a look at the blood cells under the scope and she said she thought it was Acute lymphoblastic leukemia (ALL).  She sent the blood off to a machine that looks at the cells and allows them to figure out what type of cells they are.  This will confirm whether it is ALL or another form of leukemia.  Once they have the definite diagnosis from the machine it will tell them which of the chemicals they need for the treatment. 


She has a number of things that need to be done today to confirm the diagnosis and prepare her for the chemotherapy that will most likely start tomorrow.  The first has already happened.  It was an Echo Cardio Exam.  This was to make sure that the heart was contracting normally and that there aren't any abnormalities that they need to watch for.  It also is a baseline so they know what to watch for as the treatment progresses.  The other things all take place while she is sedated.  They need to take a bone marrow biopsy.  This lets the doctors know how far along the leukemia is and confirms the type as well.  They also do a spinal tap.  This serves two purposes.  The first is to see if the leukemia cells have passed to the central nervous system.  The second is to give her a dose of the chemotherapy into the central nervous system.  This is because when they administer the chemo in the blood, the medicine doesn't make it's way into the central nervous system and vica versa.  The third thing that happens while she is under is that they will put a "central line" in.  This is where the chemotherapy will be administered.  There are two types of central lines.  Either a port, which is under the skin or a tube that comes out of the skin.  We still need to decide, but are leaning toward the port, as it seems to be the less invasive on the child. 


This procedure will take place sometime today, when they can fit her into the O.R. schedule.  Until then, she can't eat or drink.  This caused some issues last night when she really wanted a drink before she went to bed.  She ended up crying herself to sleep.


Story:  


I guess I should give the background to how we got to where we are at.  Jess was concerned with Sarah while she spent last week in St. George with her family.  She noticed that Sarah was getting big bruises and they were not going away quickly.  When she got back to my parents on Friday, Jess noticed red pin pricks on Sarah's legs.  These are called petechiae.  She started watching her closer.  On Monday, Sarah fell asleep while Jess was shopping.  This is very unusual for Sarah.  She knew that something was wrong.  She called Dr. Gordan Glade's office, and setup an appointment.  It was a later appointment in the day but while she was on the phone an appointment opened up in 20 minutes.  She took Sarah in and Dr. Glade had her get some blood tests.  She went to AF hospital and got the blood drawn and headed to my parent's house.  She got a call from Dr. Glade and he told her that she had leukemia.  They had something to eat and had Jess's parents come out to my parents house, so that Sarah could get a priesthood blessing before taking her up to Primary Children's in Salt Lake City.


I got a call from Jess right after she heard from Dr. Glade.  I was still at work, but quickly knew that I needed to get back to Utah.  I called Southwest and the rescheduled my flight that was on the 11th to yesterday, 8/1.  The flight was at 8pm and it was just after 5pm.  They didn't even charge a fee, or the difference in fare.  Another little blessing.  My work was supportive.  My boss drove me home and let me throw a few things in a bag and then drove me to the airport.  He has been super supportive.  I am truly blessed to work with some great people.  I landed shortly before 11pm on 8/1.  My father had taken Jess and Sarah up to Primary's and then came and got me at the airport.  I met Jess and Sarah in the Emergency Room where Sarah had just had an X-ray of her chest to check for masses.  The X-ray looked clean and they took some blood and put in an IV shortly after I arrived.  We got moved up to a room in the ICS


I should get this posted and start a new post or this will go on for a long time.   Thanks for all the love, prayers, and support.