It always comes back to faith

I know I talk about the principle of faith a lot in my blog posts, but that is always what it comes down to for me.  It's hard to not get side tracked by fear and worry about the future of DIPG, but the bottom line is, I must continue to be faithful and know that the Lord knows best.  There really is no other way to cope with all that comes along with this disease.  I know the statistics and the fact that this tumor is incurable, inoperable, and many other negative words that go along with it.  How do I stay positive with so much negative information?  The only way to do this is to continue in faith and allow God to speak to me.  Often times he speaks to me through others.  Last weekend our stake Relief Society had a special performance by the christian women's musical group Mercy River.  When I heard they were coming I was excited to attend this event.  The weekend started out busy and I was getting the house ready for company to come (as Kera mentioned in her post) and I didn't get a lot of sleep the night before, so I was debating whether I should go or skip it.  I showed up a few minutes late and had to sit in the back, but I am so glad I went.  I felt like each story they shared and each song they sang was meant for me.  I just wish I had thought to bring some tissue since tears were streaming down my face for the majority of the performance!  One of the songs that touched me was The Reason for the World written by a man named Matthew West.  Here is the link to his video here:
http://vimeo.com/m/15849039
They also shared about their experience at primary childrens and how they filmed a video at the hospital called "It Might Be Hope".  That one really got to me as I watched the interviews of the families and the children who were sick at this amazing place called Primary Childrens Medical Center, which I have come to be very familiar with. Here is the link to their video:
http://www.youtube.com/attribution_link?a=hKfCUpcL_JU&u=%2Fwatch%3Fv%3DhL6jrWPDGJY%26feature%3Dshare

They closed their performance with the song "How Deep the Fathers Love For Us" which I have heard a few times and I love it!  I heard the spirit speak to me throughout this performance and I am grateful for this tender mercy.  I know God loves me and he sends others to minister to me to remind me just how much he cares.

The week we had family here was a lot of fun.  It was a good break for all of us.  Kera had a great time and like she said she even was able to get her ears pierced. This is something that Dave has not wanted her to do and every time she has asked in the past he has said not for a LONG time.  But when we decided to have a girls day and shop at the mall, I thought it would be a perfect opportunity to do something that she has wanted to do for a long time, and Dave consented.

The weekend has been tough since our family left.  Kera was very tired on Friday and I could tell that she has had a harder time with her slurring speech a bit more and with her ability to walk.  She has also gained so much weight so quickly that I know she struggles with her appearance as well walking around and carrying all the extra weight. I want these things to get better and not worse.  I want her to be improving, but I know that this tumor has other plans.  I do want to believe that the temezolomide will do something to help the growth of the tumor.  I am also looking into seeing a woman that practices eastern medicine to she if she can help us.  I want more than anything for her to feel good.  Just stable and not worsening so she can enjoy life.  As I said in the beginning of this post, it all comes down to faith and trusting in God.  I want to be able to be guided by the spirit and not got caught up in the negative crap that surrounds me.  I want the very best for Kera, and I know I am not the only one who wants that.  I know that we are blessed through our trials.  Two scriptures come to my mind that refer to this.  There is one that we read in Sunday School that is found in Romans chp. 8:28 that says "Nevertheless-whosoever putteth his trust in him the same  shall be lifted up at the last day" and also Alma chp. 36 that says "for I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day."

I took Kera and Jacob both to her appointment at primary childrens on friday.  Jacob had an appt. to see one of the psychologists that works with the kids at primary childrens.  I've been worried about him lately and dealing with all of the things that come with having a terminally ill sibling.  He said that sometimes he feels invisible, and that everyone always asks how Kera is doing and what is happening with Kera, but they don't ask about him.  I know it's so hard for him as well.   He does so much to help everyone in our family, and he's a really good kid.  I know this is affecting all of us.  He needs to know he is important too and I want others to ask him how he is doing and give him attention that he needs as well.  That is one of the things that is so hard about this, just trying to divide my time up between all of them, because I spend so much of it caring for Kera and spending extra time with her, but I know my other children need me as well.  I will continue to pray for each of them, and hopefully all of you reading this can pray extra hard for each member of our family as we deal with this trial.  I know that so many of you are already doing this.  I just need to take time to listen to the spirit and have him help guide me and our family.  I want to be able to do the very best for all of us.