Tuesday, May 29, 2012

Home Sweet home.  The last seven days at home have been great.  Lexe has really enjoyed her time at home and has stayed healthy!!  Lexe has spent a lot of time resting and eating home cooking.  We had a fun time last Friday celebrating Lexe's 18th birthday.  A few of Lexe's friends came by and we ended up watching a movie and grilling burgers.  Lexe felt it was one of her best birthdays ever.

The Campbell's and the Reinbold's gave Lexe a cool pair of orange nikes for her birthday
Happy 18th

Birthday visitors

On Sunday Elle Duke and her mom came by the house, Elle wrote "I came to win" - Lexe's Song, and sang to Lexe.  Elle is a very talented young lady and her songs were awesome.  We all enjoyed the visit and appreciate the interest the Duke family has shown our family.  Elle is ready to release her first album and we can't wait to purchase it!

Marci Duke top right, Elle Duke bottom right

On Memorial Day, Lexe, Laurie and her sister Mackenzie went for a hike up Bell Canyon in Sandy.  It was a beautiful day and Lexe did great on the hike.  Tons of energy. 

Lexe and her sister Mackenzie up Bell Canyon

Laurie and Lexe

Lexe, Mackenzie and laurie hiking Bell Canyon

Lexe continues to have her health monitored by home health care nurses.  Her ANC count is still only 200.  We are all hoping that her count can get to 500 by the end of the week.  As thing stand, Lexe is scheduled for an echocardiogram, bone marrow aspirate, and spinal tap this coming Friday.  The plan is to admit Lexe to the hospital June 6th and start her second round of chemo.

Alta High gradation is scheduled for June 5th.  Lexe has received permission to attend her graduation!  We have met with high school officials and they are going to work with us to minimize Lexe's exposure to others.  It look like Lexe can sit away from the crowd and will be the first student read.  She is both excited and nervous to attend the graduation.  

Thursday, May 24, 2012

Lexe has really enjoyed her last two days at home!!  She has spent her time sleeping in a comfortable bed, eating home cooking, shopping with Laurie, driving again, and attending a soccer game with teammates.  It feels good to have the family together every evening.  Lexe is still taking five different medications, including an antibiotic injected into her line three times per day.  Laurie is in charge of administering all meds and is doing a great job.  Two time per week we have a home health care nurse come to the house to draw blood so that all of Lexe's counts can be monitored.  Today the ANC count was 100 which is still very low.  We need to continue to be cautious.

Garage sign that greeted Lexe at home

Last night Lexe joined her Avalanche "94" teammates at a soccer game in Utah County.  Lexe was one popular girl.  She had to wear her mask but that didn't seem to bother her at all.  She was greeted by teammates, college coaches, and a host of others.  Despite the cold night, it was great to see her enjoying a soccer game.
Lexe surrounded by her teammates
Tomorrow Lexe turns 18! She is planning on having a few friends over for a BBQ.  Probably not the bash Lexe had in mind but I'm sure she will make the best of things.  Once Lexe turns 18, she will be responsible for signing all of her medical documents.

Many people have asked us how the rest of our children are doing.  Mackenzie, our oldest, continues to go to school at BYU Idaho.  Mackenzie wanted to leave school and come home after Lexe was diagnosed but we really wanted her to stay in school.  Last week she was accepted into the nursing program which strengthened her resolve to continue her studies. She wants to be closer to Lexe during this tough time and travels down to SLC every few weeks to spend the weekends.  Mackenzie spent several nights with Lexe while she was in the hospital.  We have encouraged Mackenzie to stay in school and study hard.    The twins, Colby and Hadlee, have also done well.  They have not had much parent time but are very mature children and with the help of our friends continue to attend all of their scheduled activities.  They are independent mature children and we are grateful that they have been able to understand this tough situation and adapt.

The folks at Primary Children's Hospital called today and they have schedule Lexe for an echocardiogram and a bone marrow biopsy to take place next Wednesday. This biopsy will  show if any leukemia cells exist in the marrow.  VERY IMPORTANT BIOPSY!!!  They would like to start the 2nd round of chemo June 1st, however,  Lexe's high school graduation is June 5th and we need to decide if Lexe will attended.  If Lexe attends graduation we may delay chemo until after the ceremony.

Thank you again to all those who continue to support our family

Monday, May 21, 2012

Tomorrow Lexe is coming home!!  After 32 days in the hospital, round 1 of this 4 round fight concludes.  Today we spent most of the day preparing Lexe to leave the hospital.  She received platelet and red blood cell transfusions to "top off" her levels before heading home.  One of Lexe's physicians is going to take her running tonight to help her determine her safe maximum heart rate.  Lexe needs to stay within a set heart rate, and stick to it,  during her recovery stage.

Staying infection and fever free during her time at home will be our focus.  It looks like hand washing will be the norm around the house for everyone coming and going.  Any temp over 100 could lead to readmission to the hospital. Wish us luck.

We are hoping that our family life can return to some sort of normalcy during the next week or so.  I'm sure Lexe is looking forward to some home cooked meals.

Support from the soccer community continues.  Our local MLS professional soccer team, RealSaltLake,  is providing a fund raising opportunity for Lexe.  I believe the Utah Avalanche Soccer Club was instrumental in putting this together for Lexe.  THANK YOU!!

It looks like you have three great games to choose from.

Saturday, May 19, 2012

The last few days have been a "cat and mouse" game fighting fevers.  Lexe has been very upbeat over the last several days but has battled a persistent fever.  The mornings are good but as the day progresses her temp gradually rises.  She has been on three different antibiotics including a very powerful drug called Vancomycin.  If the fevers don't resolve by Monday, she will undergo a CT scan of her head, chest, and abdomen.  The purpose of the CT scan is to see if she has developed any areas of infection in her body.

Her counts have dropped again, mostly due to the fevers, but we remain optimistic that they will improve soon.  Lexe has now been in the hospital for one month.  Her goal continues to be discharged before her birthday on the 25th.  Keep your fingers crossed.

We were contacted by the Make-a Wish Foundation this week and they are going to grant Lexe a wish. Lexe is not sure what her wish will be but we will keep everyone posted.  What an awesome organization!!

It has come to our attention that the Utah Avalanche "01" team, and others, held a bake and lemonade sale for Lexe during todays State Cup play.  We are blown away by the many acts of kindness and generosity shown to our family and especially Lexe.  We would like to take this  opportunity to say to the "01" team, and any one else taking part in this, THANK YOU!!  What a thoughtful generous gesture.  The Utah Avalanche club truly is our family.  The following pictures were sent to us today by a "94" parent:

Cupcakes with Lexe's patch made from frosting

State Cup booth

Way cool!


Thursday, May 17, 2012

Some good news...  One of Lexe's physicians, Dr. Wright, told us that Lexe has registered an ANC count.  Even though the count is low, it does show some small signs of cell production.  We will continue to monitor her labs and hope for great things to come in the next few days.  We have been told that her ANC count needs to show an improving trend before Lexe can leave the hospital.  Lexe's birthday is the 25th of May and we are all hoping that she can be home for her birthday.

Last nigh Lexe had a minor setback.  She developed a fever that spiked up during the night.  She was aggressively treated with antibiotics and the fever seems to be under control.  Unfortunately, fevers have an adverse effect on ANC count.

Over the next few days we will try to keep Lexe fever free, kick back and grow some cells.  If all goes well hopefully Lexe can come home for a week or so and officially conclude "round one".

Sunday, May 13, 2012

Happy Mother's Day! We spent a very nice Mother's Days together as a family at Primary Children's Medical Center.  We ordered pizza from Settebello Pizzeria, best pizza in Salt Lake City, and had a great Mother's Day feast.  Lexe continues to do well.  Her counts, particularly her ANC, continue to show 0.  Hopefully in the next few days her bone marrow will start to wake up.

Today Lexe had to move to a different room....major bummer!!   Every few weeks patients in the ICS Unit are required to move to a different room to allow for a deep clean of the room.  I guess this protocol helps with infection control.  Lexe was not very happy, she really liked her room and had it organized just the way she liked it.  Give her a couple of days and she will have her new room styled out.

Lexe continues to go out on her 9:00 PM walks with her buddies Sara and Hunter.  Sara, age 12,  is coming to the end of a tough AML battle and should be set to go home to Montana in a few weeks.  Hunter, age 9, recently relapsed after a long AML hospital stay and is now preparing for a bone marrow transplant.   These kids are brave, tough, happy people.    Several nights ago Lexe left the hospital and went for a short jog, alone, in the area around the hospital.  We are still deciding whether or not that was a good idea.

Lexe's spirits are good, we as a family are doing well.....we feel blessed!

Lexe and Sara
Lexe, Hunter, and Sara going for a stroll

Thursday, May 10, 2012

May 10th

Still patiently waiting for Lexe's numbers to go up.  The most critical one...her ANC count is still at "0".  But we are hopeful that we'll see it start to rise in the next couple of days.  In the meantime Lexe reads, watches lots of episodes "Grey's Anatomy"and anxiously awaits 9 pm when she can take her walk about the hospital.

The awful side effects of chemotherapy are starting to take their toll on Lexe's beautiful dark hair. Although it breaks our hearts to see this happen, Lexe continues to take it all in stride.  She has started to accumulate quite the collection of hats and she ROCKS them all.

Strength, hope and courage.  That is what makes a champion.  God bless and strengthen the champions who battle this hideous disease we call cancer.  You're our heros!!

Take a minute to watch these amazing kids from Seattle Children's Hospital.


Tuesday, May 8, 2012

Come on cells!!!  Last Wednesday morning was Lexe's last dose of round 1 chemo.  We have been told that it will take 10-14 days for Lexe to start producing new blood cells.  The wait is on.  Lexe continues to be in great spirits.

Hey everyone it's Lexe. I thought it was about time that I posted. First, I want to thank everyone for their prayers and support! I truly feel so loved and its helped me stay healthy this past week. I've been in the hospital for 2 weeks and 4 days now. Thanks to all my wonderful visitors I've never been bored. Now that I'm not being hooked to Ivan, my IV pole, all day it's harder to sit still in my room. Luckily the doctors have started to let me walk around the hospital after 9 P.M. It's hard to wait all day but you take what you can get. It's hard to believe that I'm sick when I feel so good! I don't think people would believe I was sick if I hadn't have cut my hair. Unfortunately I'm starting to lose it and I haven't quite figured out how I feel about that yet. My bed looks like a dog shed all over it but nope, it's just my hair. Right now is a good time because I'm just waiting for my counts to go up. Not too much action going on except sleeping, eating, and sitting around. My nurses comment on how I sleep in but I'm a teenager so I think it should be expected. Well, I think that about wraps things up. Thanks again to everyone for their support! I couldn't do this without you guys:)

Saturday, May 5, 2012

Well it has been several days since our last post.  Lexe is now 3 days past her last dose of chemo.  Her blood counts are at rock bottom levels.  Her days are spent resting and a lot of sleeping.  Lexe continues to see visitors, however, we have been advised by her physicians and doctors to keep the visits short.

Lexe is starting to get some of her appetite back.  It is important that she build herself back physically in preparation for round 2 of chemo.

Lexe is starting to get a bit stir crazy.  Today she was kicking her soccer ball around in the room.  Hopefully her blood count will soon recover to a safer level allowing her to leave her room.

We continue to receive a tremendous outpouring of support and love.  Our hearts are full.

Wednesday, May 2, 2012

Round one of chemo OVER!!  This morning Lexe finished her last dose of chemo.  Three more rounds to go.  Lexe will now spend 21-28 days in the hospital rebuilding her blood counts.  Her spirits are high and we are all encouraged by her determination.  Once Lexe's counts are recovered, we hope she can come home for a week or so before round two begins.

We can't say enough about the nurses at Primary Children's Hospital.  They are talented, kind, caring people.

We hope to get all the media attention behind us and focus on getting Lexe well.  As Lexe has said "she isn't the only one out there with leukemia".  We are not even aware of some of the stuff being run.

Lexe's grandpa made us aware of the Salt Lake Tribune article tonight.



Thanks again for all your support!

Tuesday, May 1, 2012

We are coming to the end of chemo--round one.  Lexe has had an amazing last couple of days.  Her last chemo will be given wednesday morning.  She is feeling real tired but continues to be upbeat and happy.  IV antibiotics continue because of an infection but is seems to be under control.  Yesterday her physical therapist came to her room and ran her through a workout.  Lexe busted it out!!!

Yesterday we were contacted by Doug Robinson, a writer with the Deseret News, who wanted to come to the hospital to talk with Lexe.  Today he wrote an article in the paper.  We are posting the link to the story on the blog.


Today, Emerson Lotzia, a channel four sports anchor, came by to do a story on Lexe.  It will air tomorrow night at either 5 or 6:00pm on channel 4.  We will have a link to the story posted tomorrow.
hitting the push ups
Keeping the core tight.