The Phone call that changed everything

Before I begin this blog, let me first say how much we have appreciated the support we have received from family and friends thus far.  It helps a lot.  Especially all of the prayers.  We need a miracle for our little girl, and I have faith that, god willing, she will be healed.  Let me also say that Kera is a very bright girl, she does not miss much at all, and when we were in with the doctor at primary children's, she heard the doctor use the term incurable, and it really upset her.  We have since tried to reassure her that she is going to take medicine and will be doing treatments to make her better, and she will get better.  I want to spare her the details, and so we are asking that you all use discretion when discussing Kera's illness with your children.  We are not using the term cancer or tumor with her or any of our other children, in hopes to spare them of extreme worry and fear until it is absolutely necessary to tell them.  We want her to feel as normal as humanly possible during all of this ordeal.  Thank you!

Tuesday July 17, 2013-
This is the day that changed our family's life forever.  I took Kera to the pediatrician on Tuesday because she has been complaining about dizziness for the past 5 weeks or so.  She fell off our swing set right after school got out, around the 8th of June. She was sitting on the trapeze bar and she fell off backwards and hit her head.  I didn't see her fall, but we were all outside for Family Night playing ladder ball.  She came over and told me she fell off the swing, but she was crying terribly.  I remember her telling me a day or so later that she got dizzy when she laid down.  She also complained about getting dizzy after doing her gymnastics.  We took her out of her tumbling class for a break back in May, so she wasn't doing that at the time.  But she still would tumble around and jump on the tramp.
A few other symptoms starting popping up throughout the summer.  She seemed more tired during the days, and she was also short tempered, and whinier than normal.  She would complain about chores more than normal, and fight more with her brothers.  About a week ago I also noticed that one of her eyes was not tracking normally and the eyelid drooped, and she just looked tired.  Also her speech was a bit more slurred than normal.  She's always been a mumbler, but this was more severe.  So back to Tuesday.  I took her in to our pediatrician because I thought she may have gotten a concussion when she fell off the swingset, and this is why all these symptoms were occuring.  At the check up the pediatrician agreed that she may have suffered a concussion, just the eye tracking was what worried him so he ordered a ct scan.  He called and the clinic close to that office was available, so I drove her over there to get it done.  It sounded routine, and we were pretty sure that we wouldn't see much.  Well, about an hour or so after we got home, Dr. Owen the pediatrician called to tell us that he got the results back from the scan.  He told me it wasn't good news.  He said that they found a tumor on her brain, and it was at the brain stem. Not in a good location.
He said he made us an appointment at Primary Childrens for the next day with oncology/hematology.  I just about flipped out even hearing the word oncology.  My heart still races as I write this and think back to that moment.  I started to lose it on the phone and I told Jacob to run and get dad who was downstairs.  Jacob told him that I was crying on the phone and he just knew it was something bad.  The doctor kept talking and I was numb in shock, so Dave got on the phone and he explained things again to him.  I ran to my bedroom and curled up in a ball just saying over and over "I don't know what to do, I don't know what to do".  This had to be a mistake.  He was obviously confused and maybe he had us mixed up with someone else's scans. When Dave got off the phone we just cried together and held one another.  He started to look up information on the ipad, and we also called our parents.  There are no words to describe the pain I felt that night while thoughts raced through my mind about what we just heard and what was going to happen and what we would be told the next day.  That was the longest night of my life.  Dave and I did our best to hold it together.  I finally was able to come out of the bedroom and be with the kids for a little bit before they went to bed. I finished watching an American Girl movie with Kera and the kids and I just had my arms around her the whole time. I slept so little that night and my mind raced through endless thoughts and emotions.  I went downstairs to check on Kera around 3 a.m. and went to our craft room and read journals Kera has written and looked through photo albums.  I think I slept for a for hours.
The next day we spent taking pictures, taking video, we played games as a family, and we asked Kera where she wanted to go for lunch.  She chose Golden Corral, one of her favorite restaurants.  We had such a fun time together, Dave and I were fasting so we really got to focus on the kids and watching them enjoy their meal and the cotton candy, and laughing at Ryder as he got food ALL over him and ice cream in his hair and everywhere.  We laughed at Kera's cotton candy moustache and at Jacob's 10 desserts, and Michael's insisting that he eat every dessert and to see how many times he could go back to the chocolate fountain.  It was wonderful, but I  had that pit in my stomach the whole time.  And I couldn't help looking at other people and families with envy.  Why does my daughter have this sickness and you are able to sit there looking so carefree?
We left and my parents were at our house waiting to watch the kids.  We didn't want to spoil anything, so we told Kera and the kids that we had to take her back to the hospital today for more tests.  She was so sad and didn't want to go, but we got back to the house, Dave and my dad gave Kera a blessing, we packed some things and we left.
When we got to the oncology lab we met our dr., or fellow, Dr. Fair.  He did a check up on Kera similar to the one our pediatrician gave her the day before.  We had been given a cd of the ct scan we had taken the day before, and gave it to him.  He returned a little while later with his attending doc. She was very factual about the results of the scan and confirmed what the technician wrote in his notes.  She had DIPG, a rare brain tumor in the pons region.  Like I mentioned above, Kera was in the room at the time, and the doctors found it best to allow the child to be informed, but I do wish she had not heard that term incurable.  She started to cry and then one of the nurses took her out.  The attending doctor said she may not fully understand the term uncurable, but Kera is no dummy, she knows what that means.  Since that time we have tried to do our best to explain to Kera that yes she has a sickness in her brain, but she is going to be getting treatments to make the sickness and the bad symptoms go away.  Which we believe that with the steroids and the radiation, this will happen.  The doctor as well as the radiation doctor that we met with yesterday, Dr. Hunter, have both told us that in almost all cases this radiation with improve the systems and will shrink the tumor.  The tumor is so aggressive and invasive that there is no way to do surgery on it.  The vital nerves are intertwined with the healthy ones and they cannot risk being damaged.  In most cases after a period of time the tumor will come back, and at that point there is no second radiation, and chemotherapy has not proven to make any improvement at all, it just makes you sicker and suffer those last months.
The radiation therapist that we met with yesterday (Thursday)Dr. Hunter, was amazing.  He knows his stuff and we feel very confident in his abilities.  He showed us the scans of her brain.  He pointed out the location of the tumor, and it was a large mass covering most of the brain stem.  He also fitted her for a mask that she will wear during treatment that is made specially for her.  The treatment itself will only be about 10 minutes long, they will aim the laser, or radiation treatment, right at the tumor to shrink it down over a course of 6 weeks.  She will start the treatments next Thursday.  She started taking the steroid pills Wednesday night, and we have already seen improvement in her eyes today and some of the other symptoms, like the dizziness, have decreased.  Her balance and depth perception have been a little off, but I think that is from the steroids doing their job and her body trying to adjust.  She also has had a lot of nausea and tells me often that her stomach hurts, this could be from the affect of the steroid pills as well.  She is also taking prevacid with the steroids to protect her stomach.

Today is Friday and she woke up with a bad stomachache, and complained about the nausea and tiredness a lot.  She also has been tripping and having those balance problems a bit more today.  But around noon, after the zofran for nausea kicked in, she started feeling a little better, and Jacob was going to swim outside in our wading pool, and she decided to swim too.  I was so glad.  We took all the kids outside to swim, except Michael who was playing with a friend.  She wasn't totally into it, I think she still felt a bit sick, but she started getting energy, and she asked if her friends Samantha and Gracie from our ward in Kaysville could come play.  I texted them and they came right away.  So Kera played with her friends and got a little tired, but had a lot of fun seeing her old friends again.  After they left we had dinner, got another round of meds, and she was in bed early tonight.  Tomorrow is another day.  We shall see.
 I do know that I have faith that miracles are real and that our Kera will get better.  The treatments will work and she will be able to do those things that she used to do.  She will return to school and go on family trips.  We will cherish each and every day with each one of our children.  Our family is eternal and I know that the Lord knows what is best for our family.  He knows the whole picture.  I know that we will be strengthened through this time.  I have already seen a huge change in our family and the spirit in our home, even after the shock and devastation that comes in a time like this.