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.

a very enjoyable and tiring week

this is kera typing, last week was fun and tiring. we had my family from Texas come over. It was my aunt Jennifer, my uncle Kenneth, my cousin Seth, who is married to Brittany, and they have a cute little baby named Foster.  Also my cousin Spencer. They got here on Saturday. On Sunday after church we had a picnic at the park. On Mon, we went to Antelope island and I got a little stuffed dear and I named it Spot, I  also built a sand castle in the beach area while every one else[ but not my dad or ryder] went on a hike. on weds. I stayed home and on Thursday I went shopping at the mall and had lunch at chick fil-a. and got clothes and a stuffed elephant from my cousin Brittany. In the car while we were driving to the mall, my mom called my dad and told him I wanted to get my ears pierced and he said yes! So I got my ears pierced. I got pink butterfly ones which I haft to clean and wear for six weeks. when we got home my mom took me, Michael, Jacob, Ryder and my cousin Spencer to the arcade. Then they left Friday morning. I was really tired yesterday and today but the week was very fun. :)
 

A better week for sure

This week has been much easier to handle than last week.  How can it get much worse than that right??  Kera has been pretty stable in her symptoms.  Her arm and hand are still unable to move, and she struggles with her left leg. We had a physical therapist come into our home and evaluate Kera.  We are going to start seeing a p.t. twice a week so that Kera can continue to strengthen the muscles on her left side.  We do not want them to atrophy or start to get so tight that they become painful. Kera has been feeling less dizziness, which is good news.  She also has gone down from 3mg on the steroid to 2mg on  Friday.  I am hoping that each week we can lower the dose without having too much dizziness.  I know she really wants to be off of them, but I also know that they have helped her feel better as well.  She has gained almost 20 pounds since she started them, which is similar to what happened the last time she was on them.  Of course the changes in her body make her more self conscious, and she has no desire to be at school right now.  I know she will go back if and when she is ready, so we have enrolled in her in the home hospital program again.  This allows her to miss school when she isn't feeling up to it, and allows us to be more flexible with her schooling and completing assignments.

The boys have all recovered from their sicknesses as well.  Our ward has also started bringing in meals twice a week as well as helping with some housework which has helped lessen my burden and I am so grateful for the help. :)  We have Dave's sister and her husband and children coming this Saturday for a visit.  It will be fun to visit with them and Kera is excited to meet her 2nd cousin Foster who she has yet to meet.  It will be a good break from the monotony of life. Kera went to sacrament meeting today and came home afterwards to take a nap.  We went down to my parents house in Riverton after church for our monthly Sunday visit.  We had a great time.  Kera's cousin Grace made a book of all of our family's testimonies on faith as one of her value projects.  Kera really liked the book and I'm grateful to my niece for thinking about Kera and putting the book together.  I continue to take everything one day at a time and this helps keep me sane and allows me to focus on what I need to get accomplished each day without getting too overwhelmed.  I thank all of you for your continued prayers on our behalf.  I am grateful that this has been a better week for our family and that Kera's spirits have been lifted and she has been happier lately.  :)