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.