A memorable day

November 25, 2014

Today marks 6 months since Kera's passing, and I thought this would be a perfect time to update my blog.  Dave sent me a text yesterday saying the mortuary called and they are putting Kera's headstone in tomorrow.  I was surprised to hear the good news since I hadn't heard anything for a few weeks and we still weren't sure if they would get it in before the ground froze.  It also made my heart happy when I realized that her headstone would be put in on her 6 month anniversary.  I know this wasn't a coincidence.  I know Kera had a hand in it.  The day has been full of memories of Kera.  I went over this morning to remove some of her things from her grave to clear it out, and the truck with her headstone pulled up right as I finished loading the items in my van.  I was able to see them unload it off the truck and everything.  I left before it was all set up, and I took the boys over later to see it.  It is absolutely beautiful.  I love everything about it.   I felt such a reverence when I went there.  I was experiencing mixed emotions, since having a headstone makes everything so real.  It is a permanent fixture.  This has really happened.   But I am also relieved to have it here and for me to have a bench to sit on when I visit her, and I know she loves it.  
I think she was just so excited for it to be here and for me to see it.  Everything went smoothly.  I came home and posted on her fb page, and put some pictures of her up off my phone. I had a friend come over today to help me go through some of her old t-shirts because she offered to make me a quilt with them.  It will be a special comfy blanket that I can curl up with and be reminded of her.  Dave went stopped on his way home from work to see the headstone too.  When he got home we spent some time tonight talking about Kera and reading scriptures together.  All of these things added to the spirit in our home. I love days like this when she is very near.  I also had a thoughtful neighbor bring a sweet ornament with a butterfly and an inscription on it.  She had written a touching letter to our family that I read out loud.  Of course I cried and was emotional, but I know that also is helpful.  We watched some home movies of Christmas and Disney world last year.  It was sad at first, but the more we watched, the more I didn't want to turn off the video.  I loved hearing her voice and seeing her face again.  
I cannot believe that it has been 6 months already since I held her in my arms.  In some ways the time has flown by, and in other ways it feels as if life has moved in slow motion.  
Thanksgiving will be here in two days, and then Christmas will be here before I know it.  I am really not looking forward to Christmas this year.  Even hearing Christmas music makes me teary eyed.  I loved our magical Christmas last year, and this one will feel empty.  I know that Kera would want me to be excited for Christmas and the celebration of the Savior.  A friend shared this poem with me on Kera's FB page, and I want to share it here.  It is so touching and good to keep in mind during this holiday season.  

 "My Christmas in Heaven".

I see the countless Christmas trees around the world below,
With tiny lights like Heaven’s stars, reflecting in the snow.
The sight is so spectacular; please wipe away the tears,
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear,
But the sounds of music can’t compare with the Christmas choir up here.
I have no words to tell you the joy their voices bring,
For it is beyond description, to hear the angels sing.

I know how much you miss me. I see the pain inside your heart,
But I am not so far away… we really aren’t apart.
So be happy for me, loved ones, you know I hold you dear,
I’m glad I’m spending Christmas with Jesus Christ this year.

I send you each a special gift, from my heavenly home above,
I send you each a memory of my forever love.
After all, love is a gift more precious than pure gold,
It was always most important in the stories Jesus told.

Please love and keep each other, as Heavenly Father said to do,
For I can’t count the blessings or the love He has for you.
So have a Merry Christmas and wipe away your tears,
Remember, I am spending Christmas with Jesus Christ this year.

~I love you with all my heart Kera 

Love,

Mom

Stake conference talk

Tuesday Sept. 8, 2014
As I mentioned in my last post, I was writing my talk that I was asked to give in stake conference on Sunday.  I was glad to get it all written before we headed down to Riverton to attend my niece's viewing and then funeral on Saturday.  The services were very spiritually uplifting, but I was also emotionally drained by the end of it, as it brought many memories back for me of my sweet Kera's funeral services.
My brother, my sister-in-law, my niece Grace, and my nephew Sam all spoke, along with their stake patriarch.  I was amazed at their composure throughout their talks.  Grace gave a great talk about music and her sister Cora, and talked about how the song "There is Sunshine in My Soul" reminds their family of Cora.  This was also the opening song at the funeral.  Well on Sunday at our stake conference after I spoke, our intermediate hymn was none other than "There is Sunshine in my Soul".  I felt like that was Cora's way of saying she was there with me.  I know my Kera was there helping me speak as well.  I didn't want to break down in front of the whole congregation, and I think she helped me keep it together so I could share my message.
I wanted to include a copy of my talk here on the blog.  Anyone who would like to can read it, but I really want to keep it to have and look back on later when I compile this blog into a book.


Stake Conference talk given on Sunday Sept. 6, 2014

            I am Staci Goar and our family moved here to West Point two years ago.  The topic I have been given to speak about is "Called to Serve Him every day of your life"

I will be referencing two talks by Elder Eyring, one is called "This Day", and another talk called "Serve with the Spirit" that he gave at a priesthood meeting.

            To serve God,  we must be doing the things necessary for Him to speak to us and for him to reveal to us how he would like us to serve.  We cannot serve others when we ourselves are not in tune to the spirit and worthy of his light and revelation.

            The first thing we can do is have daily scripture study.  I have found that taking some time each day to ponder the scriptures, read through church manuals and Ensign articles, reflect on how they relate to my life, and asking questions and then looking for the answers in the scriptures, allows the Lord to speak to me and reveal the things he has to tell me.

Quote by Elder Eyring: "We read words and we may get ideas.  We study and we may discover patterns and connections in scripture.  But when we ponder, we invite revelation by the spirit.  Pondering, to me, is the thinking and the praying I do after reading and studying in the scriptures carefully"

            When I read the scriptures hurriedly and close the book, I have not allowed time to let the words sink in.  There is no time for revelation to come.  Sometimes even studying the same scripture for a week will allow you to really understand it and do an in depth study with cross referencing and searching other topics related to that scripture. 

            The second thing we can do is pray to Him. We must pray daily, sometimes multiple times throughout the day, for us to receive direction and to know how to serve.  Elder Eyring says "As the humble servants of the Savior, we should pray for the manifestations of the Holy Ghost to come to us in our service and to those we serve.  Humble prayer to our Heavenly Father, in deep faith in Jesus Christ, is essential to qualify us for the companionship of the Holy Ghost."

            *Prayer is essential to get us through this earthly journey.  I have relied heavily on prayer throughout my trials this past year. *Tell about Kera's diagnosis.  When Kera was diagnosed I would plead with my father in heaven to help me  Throughout the process, from the very beginning until Kera passed away, and especially now that she is apart from me, I kneel in prayer often, and try to listen to the Lord and what his will is for me each day

            Pres. Eyring said "A morning prayer and an early search in the scriptures to know what we should do for the Lord can set the course of a day.  We can know which task, of all those we might choose, matters most to God, and therefore to us.  I have learned such a prayer is always answered if we ask and ponder with childlike submission, ready to act without delay to perform even the most humble service".   That phrase "without delay" sticks out to me.  There are have been times when I have been prompted to do a service for someone, or to call a friend, or to act quickly to help someone, and sometimes I have hesitated.  I know it's always best to act quickly without delay.  If we delay that service, we may miss out on a great opportunity.  The Lord may be using us as an answer to someone else's prayer, or as a ministering angel to someone else, and if we delay our action, not only to we rob ourselves of the blessings, but we may miss a real need to change someone else's life or circumstance. 

            Another way we can serve the Lord daily is by magnifying the callings that we have been given.  I have served in many different callings.  Two years ago I was called to serve as the first counselor in the Young Women's.  I had spent several years serving in the primary, and my children were all currently still in primary, so this call was foreign to me at first.  At first I wondered why I was called to Young Women's.  I did not have a daughter in the program, I didn't know if the girls related to me, and the girls had many other amazing leaders.  What was I doing there?  I got my answer after my daughter passed away and I relied heavily on the young women and the leaders to help me get through such a difficult loss.  I feel like each one of them have touched my life in their own way.  They all have attributes that I admire.  I know that they can grow by seeing me deal with my own trials and by bearing my testimony to them about what I have gone through. 

            President Monson said this of magnifying our callings.  "What does it mean to magnify your calling?  It means to build it up in dignity...to enlarge and strengthen it to let the light of heaven shine through it to the view of other men.  And how does one magnify a calling? Simply by performing the service that pertains to it."  I saw firsthand ward members who magnified their callings as they served our family in time of need.  They went above and beyond for us.

            Throughout our family's trial with our daughter's sickness and with her passing, we were able to be the recipients of several acts of service from friends near and far.  Many friends who reside in this stake have done countless acts of service for us.  I have one friend in particular who is a true example to me of selfless service.  She came to my house countless times to bring gifts to my children on birthdays, when one of my children was sick, or on a special day when I didn't always have the time to go out and get balloons or special things for them, she would bring the balloons and the cards and the little treats. She knew from her own experience what it was like to have a child diagnosed with cancer and the uncertainty and sheer terror that comes along with that. This friend came by several times a week to visit Kera and play games with her and my 5 year old when Kera was unable to be in school and would often times feel isolated from being homebound as her body had lost the ability to walk, and to talk, and do many of the things she was once able to do.   My faithful friend brought crafts for her to keep busy with.  She made jewelry with her, and even helped Kera make me this special bracelet that I wear often and which means the world to me now.  She patiently helped her string each bead, at this point Kera was unable to speak, and she would ask her yes or no on each bead.  She knew how important it was to Kera to make the bracelet just right, with each bead in a certain order.  This friend still reaches out to me and sends me little cards and messages, and it always seems to be on hard days when I am going through a particularly tough time.   I know she is guided by her Heavenly Father to do these kind acts of service, and she is a ministering angel to me and to so many other people around her. 

I cannot express enough, my gratitude to my family and friends and relief society sisters who came to clean my house once a week, and brought in dinners, who stopped by to visit with bunnies to entertain Kera, or games, or whatever they could think of to bring that may put a smile on her face that day, and teachers who came to our home to teach Kera when she could no longer be at school. Her teachers and schoolmates organized a easter basket donation, and her teachers came with huge baskets of gifts and games and toys for our family.  On Easter morning we woke up to our front yard literally covered with plastic easter eggs and toys from thoughtful neighbors who knew this would possibly be Kera's last Easter with us. Each of these people answered the call to serve God by serving us. I learned of the priceless value of service through each of these kind acts.  They answered the call to serve when I didn't know how I could make it through.  My own mother in law came and stayed with us for 6 months and worked tirelessly to help us and to be there for my boys when I had to dedicate most of my time to Kera. I have promised myself after viewing such an outpouring of love to be more diligent in serving others.  Service is about looking outside of oneself and our own problems and seeing who may be needing our help.  If we kneel in prayer and ask our Heavenly Father who we can serve that day, He will answer us and guide us to whom we can serve. 

            President Eyring says "In the hardest trials, as long as you have the power to pray, you can ask a loving God "Please let me serve, this day.  It doesn't matter to me how few things I may be able to do.  Just let me know what I can do.  I will obey this day I know that I can with thy help."

He says "By serving Him this day, you will come to know Him better.  You will feel his love and appreciation.  You would not want to delay receiving that blessing.  And feeling His love will draw you back to His service, wiping away both complacency and discouragement. 

The call to serve God is not always a call to serve others, although that is very important.  We serve God by worshipping Him at church, by taking the sacrament and renewing our covenants with Him.  We serve Him by keeping His commandments and by trusting in His plan for us. We commit ourselves to do better.  We repent of our sins and we commit to go forward in faith.  I have had many friends tell me how impressed they are with my ability to go on in faith after my daughter's passing.  They say they are amazed at my strength and my testimony.  I have to say that from the very beginning, soon after we learned of Kera's diagnosis, after the shock wore off, I had to make a choice.  I could either rely on my Heavenly Father and completely put my trust in Him, or I could become angry and bitter.  I chose to embrace God.  I knew this was a huge trial and I didn't know if I could bare it, but I learned to rely on the Lord when I didn't think I could go on.  I felt my faith in Him increase the more I put my trust in Him.  That is how God works.  When we show that we are faithful, we are given more strength.  When we bare testimony of Him, our faith is strengthened.  There were several tears and I pleaded with the Lord to remove Kera's tumor, but if it be His will.  I did not pray this way at first.  I told the Lord that I would not be able to handle it if Kera didn't make it through.  I told him he better not take her from me, or I would not be able to continue on, but I had 10 1/2 months to learn how to pray.  I learned why I needed to pray if it be His will.   I learned that God knows my daughter very well.  He knew long before she came here to Earth.  I learned to accept that He knew best.  I learned to trust in the plan of salvation.  I cherish the fact that my husband and I were sealed together in God's Holy temple and our children were sealed to us and we will live together for eternity.  My daughter will be reunited with me and I will get to raise her from the age she passed away.  Nothing will be taken from me.  I know that.  I am grateful for that knowledge and that faith.  Before   Kera passed away she was able to be given her patriarchal blessing from President Bennett.  What a blessing and a comfort that is to me that has helped me to keep my faith strong. 

-President Eyring said this about trials:

            "On many days, doing what matters most will not be easy.  It is not supposed to be.  God's purpose in creation was to let us prove ourselves.  The plan was explained to us in the spirit world before we were born.  We were valiant enough there to qualify for the opportunity to choose against temptation here to prepare for eternal life, the greatest of all the gifts of God.  We rejoiced to know the test would be one of faithful obedience even when it would not be easy.  And we will prove them herewith, to see if they will do all things whatsoever the Lord their God shall command them. Hard as we knew the test would be, we felt joy because we had confidence that we could pass it.  Our confidence came from knowing that Jesus Christ would come in to the world as our Savior.  He would make it possible for us to be cleansed of our sins by qualifying for the effects of His atonement.  We knew that the Savior would draw us to Him and would have the power to help us when the test would be hard and the temptation to procrastinate great."

            I know my daughter Kera is serving a mission on the other side of the veil.  Just like all parents who have to send their child away on a mission, it is with mixed emotions.  I know she is learning many important lessons and she has so many important tasks to accomplish.  Just as the Lord is hastening his work here, he is hastening it on the other side of the veil.  I think of Kera serving her mission and although I would give anything for a phone call on mother's day, or an 18 month release, I know that I will get to see her and be with her again for eternity. 

Kera's service is inspiring me to be a better person here.  I have a lot of work to do as well.  I need to prepare my three sons for their missions.  I need to continue to search the scriptures diligently and pray fervently for the Lord's guidance.  I need to find opportunities to serve those around me and develop christ-like charity.  I am being molded into the person that the Lord wants me to be.  The process is often a painful one.  I am being put into the refiner's fire.  It will be a long and difficult journey. But I know that I will be successful because I have the most beautiful and noble angel cheering for me and my family.  I know that my Heavenly Father and the Savior Jesus Christ live and they love me and are cheering me on as well.  I know that each of us are given our own trials to bare.  But I know that if we turn to God and serve Him each and every day without delay, we will return to live with Him again.  He will say well done, thou good and faithful servant, in the name of Jesus Christ Amen. 

3 months down

I have been feeling the need to post in my blog a lot lately.  I cannot express how much this hurts to have my daughter apart from me.  She is such a part of me, and without her here I feel empty inside. There have been many instances since her passing that I have felt her presence with me.  I felt her while we were in Texas visiting Dave's family.  I saw the most beautiful yellow and black butterflies at times when I knew she would want to be with us, like when we went swimming as a family, and while at the zoo when Ryder and I were walking down the path and I thought of how much I wished she were there, and I looked up and a beautiful butterfly fly right by me and went right next to where Ryder was walking.  One day while out in my garden, which is often the place I do a lot of my crying, I would see butterflies and know she was there.  She sends them to me as a comfort I'm sure.  While I was at girls camp at Heber Valley, which was simply one of the most sacred and spiritual places on this earth, outside of the temple and Kera's room, I saw a million butterflies all over the campsite.
I felt her presence very strongly during the week she passed away while Jacob was getting ready to receive the priesthood.  I felt her and still feel her spirit when I go into her bedroom.  I have felt her spirit every time I have visited the temple, especially when we went to the Jordan River temple to do baptisms for the dead at our family reunion.  My dad works in the baptistry and all of the cousins were there to do baptisms.  When we walked into the room to wait to do baptisms, the organist was playing the song Lilies of the Field, the song that was sung at Kera's funeral.  I knew that was her telling me she was there.  
I love these tender mercies of the Lord.  I am grateful that he allows her to visit her family during these times.  I love feeling her presence, but I wish I had one more hug, one more time to see her smile, one more late night talk in her room, one more time to see her off to school.  I want my daughter back.  I hate this.  I don't want to be patient.  I know I have so many great things waiting for me when I see her again.  But unfortunately this life is all I know.  It's hard to wait.  I feel so strongly that Kera is on a mission.  Just like any parent who has a child serving a mission for the church, I am so proud of the work she is doing, the success she must be having bringing new spirits into the light of the gospel.  Helping others and being a ministering angel.  But that doesn't mean you do not miss having them with you.  Seeing their face and talking to them in person.  Kera would have started 4th grade this year.  Not shopping for new school clothes, getting her all ready for the first day, buying a new backback, taking her picture on that first day, not seeing her walk her little brother onto the bus, that was a killer.
Last weekend my niece Cora, my brothers daughter, passed away also.  Cora was a twin and her sister died in the womb.  When she was born she had fluid on her brain and was born with just a brain stem.  She has been in a wheelchair and unable to do many basic functions.  Although she requires 24 hour care, her family views her as the greatest blessing in their home and her spirit is very strong.  When she smiles it is priceless. They are already missing her greatly. What a trial our families have been through.  Tonight is the viewing and tomorrow is the funeral.  I am a bit terrified to go through this again.  I know it will bring up many hard memories.
I also have been asked to speak in stake conference on Sunday.  I know the stake president asked me to speak for a reason, there are many things I can share about my journey that may help others.  I just sometimes feel overwhelmed by everything I am asked to go through.  I know my Kera is and has been a wonderful light to so many.  I sometimes wonder if I can measure up.  Sometimes these burdens feel heavier than I can bare.  That is why my only choice is to put them back on my father in heaven.  I have no way to do it alone.  My faith and testimony are all I have.  It will have to be enough.
I hope I can convey the feelings in my heart and share my message on Sunday in a clear way.  I have just started to write my outline.  Yikes, I better get writing. I'm praying that I can get through my talk and not bawl in front of the entire stake!

Our journey has not ended

June 1, 2014
Today is Sunday.  It has been one week since my sweet angel passed away.  The last month of Kera's life was a whirlwind of constant care, a decline her abilities which in turn made her extremely frustrated, and waiting for the inevitable to happen. We started on home hospice care on April 23rd. Kera was needing constant care at this point since she was no longer able to walk or stand on her own.  She was needing help communicating since she was unable to talk anymore either. Our principal at the school was able to quickly contact the district special services dept to get Kera an Ipad that had a special program on it to help her communicate through pictures, words, and vocabulary.  It was very helpful and is what we used the last few months of her life, and even up until the week before she passed away. Not being able to talk has been extremely frustrating to her, and she has struggled with not being able to do basic functions.  She was still eating somewhat at this point, but it was very difficult because her teeth would clench together and I had to try to pry them open to even get a baby sized spoon in her mouth. This was also imaginably very frustrating as well. She still wanted to eat and she told me sometimes that she was just so hungry. :(
When the nurse started coming in, she came about twice a week at first, and an aide came three times a week to help Kera bathe. One night in early May we had a scare where she was choking on some bits of food, and her heart rate went way up and she was in distress.  After that scare we started having the nurse come in every day. It was getting very difficult at night to keep an eye on her because she was constantly thirsty and always needing something to drink, or she would just need to adjust herself because she would slip down in the recliner and need to scoot back up.  She didn't have the strength to pull herself up either.  Hospice brought us a hospital bed right after we signed up with them, and that helped keep her propped up and more comfortable.  She couldn't lay flat anymore because it made her too dizzy.  Once Kera's right hand started to get weak as well was when kera had just had enough.  Once she was unable to ring her bell I was no longer able to let her sleep alone with the monitor on in her room. She had no way yo signal me if she needed help.  We were fortunate enough to have two hospice csn's come in three nights a week for about 6  or 7 hours and stay with kera at night.  They both ended up being wonderful, and one of them in particular said she was prompted to come and take the job.  Her name was Katie and she had an immediate connection to Kera and our family. She said she felt the spirit very strongly while she was sitting with her, and at one point in the night Kera reached her hand out and she just sat there holding her hand and comforting her. The Friday before she passed away her school class had an economics fair which she really wanted to go to.  She was in pretty poor shape, but it was important for her to go, and I'm glad she did.  She got to be in her class, see her teachers and friends, and be a part of her class for just a little while.  I think it was also good for the kids in her class to see her and even though she was in her wheelchair and couldn't speak anymore, they got the opportunity to be with her one last time.
I'm so grateful to the hospice social worker the csn's for being able to help our family so I could get some sleep at night and so I would be refreshed to care for her in the day.  We also had mine and Dave's sister come stay a night, and my mom as well. I think they will all look back and feel it was a blessing that they got to spend that special one on one time with her.
One of the most special experiences we were able to have in the last few weeks of Kera's life was to have her get her patriarchal blessing.  This is a blessing that is offered by someone who is called to act in our Heavenly Father's name, and who receives knowledge about us and our Heavenly Father's plan for our life.  It was the most spiritual moment of my life so far.  The blessings that were promised to Kera and the explanation of His plan for her has given me so much comfort where I felt that I could accept Kera's diagnosis and eventual outcome for her and be able to understand that it is Heavenly Father's plan to be here on this Earth for only 9 years, and that the rest of her work will be on the other side and that our family will be reunited and I will get to raise her because of the Savior and his gift of the atonement so that we can all be resurrected one day. These concepts may be foreign to some of you, and I hope that if you have been touched by Kera's story and want to know more about the plan of salvation, that you will study more about this topic.  You learn about it at www.mormon.org/plan-of-salvation.   The knowledge that I have that our family will be reunited and can be together as an eternal family is the only way I am able to deal with Kera's death and have some peace.

It is Tuesday now and I'm still working on finishing this blog entry. It is difficult for me to be here writing about Kera's passing.  We have had so so many tender mercies happen leading up to Kera's passing and even throughout the week afterwards there has been an increase in the spirit felt in our home.  Jacob felt Kera's loving arms around him when he gave her eulogy.  He knows she was happy with the words he shared in tribute to his sister.  The fact that he was willing to talk and asked us if he could talk at her funeral shows his bravery and character.  He also bore his testimony at church on Sunday, and shared his thoughts about our family being blessed to have her spirit with him and us throughout the week.  He bore his testimony about the Savior and that he knew Joseph Smith restored our church and was given special keys of the priesthood.  He also turned 12 on Thursday and In our church when you turn 12 you receive the keys of the aaronic priesthood and boys this age are able to pass the sacrament on Sunday and do other special and important things in our church. At first we worried about the timing of Kera's passing, and Jacob's birthday and then receiving the priesthood, but I feel like it all came together like it was supposed to, and Kera was there when Jacob was being set apart as a deacon in the priesthood, I felt her spirit so strong and Dave mentioned her name several times in Jacob's ordination.
The loss of my daughter will never be filled until I am reunited with her again, but I know I can feel her little spirit at different times in my life, and this will helpfully make the sting of losing her a little bit easier to handle.  It is such an odd feeling, this physical loss of her in our family.  I want more than anything to see her again and spend another day with her, but I know if I had one day, I would want another day and then another.   It would never be enough.  Losing and burying your child is the hardest thing to suffer through in the whole world.  It is indescribable.  I just have to wait for the day when I see her again, and pray for the gift of the Holy Ghost to comfort me and help me get through this. I know how special Kera is to her Heavenly Father.  He wants us to know that he loves us and wants to help us get through this.
Just a note to everyone that has sent flowers, gifts, words of encouragement, all of those kindnesses have meant so much to our family.  I am grateful to have this blog to keep as a record of our family's journey. It has helped me to write my feelings down and get them out.  I was so fortunate to have a daughter as wonderful, kind, spiritual, generous, thoughtful, who radiated beauty, and who's heart is just about as pure as the Savior's. I was lucky enough to be here mother for 9 years here on earth, and can't wait until the time when I will be able to continue raising her.
As I mentioned in the beginning, this journey is not over yet.  The passing of Kera has closed one door, but now we are on to another phase in the process.  There will be continual struggles and heartaches, but I am grateful for the peace and comfort that I have felt throughout this process, and good friends and family to lean on during those hard times, and I know there will be many more of those hard times and days when I will feel like I cannot take the pain anymore.  I will need to be strong and continue to lean on the Lord and my faith to get me through, just as I have done so far.

Because of Him

First off, before I start into my entry and update on the past few weeks, I would like to share a link to an article regarding new findings on DIPG.   It makes me happy to see that some research is finally being done to study this tumor and get more information so that one day, and hopefully not in the too distant future, there will be answers, there will be options for children suffering from this dreadful disease, and there will be a possible cure.  Here is the link to the article.  As a side note, if you are wondering what all the talk is about #kerascrusaders and the facebook site started by Brian Phirst, who's son was diagnosed with cancer, it is about raising awareness for childhood cancer.  Kerascrusaders is the team name we picked for her. It is a virtual run that anyone can do who does any kind of aerobic activity and wants to post their miles or minutes for children to support them.  There are no monetary donations regarding this particular event, just the hope that our children will be cared for and receive much needed funding for research into these deadly cancers.  I know that with the Gabriella Miller kids first research that was approved and signed by President Obama, events like this and other forms of raising awareness really make a difference!!  If you want to get involved with the fb event and haven't already, you can send me a msg or fb msg me and I can help you get involved.  I am passionate about changing the current status of DIPG from 0 % survivers to curable!!
Here's the link to the article:

http://www.curebraincancer.org.au/news/1044/multiple-breakthroughs-in-childhood-brain-cancer#.U0T0__ViBoI.facebook

Here's another you tube clip that gives more facts and insights into DIPG.  It's around 7 minutes, but for those of you who have wanted to know more about the type of tumor Kera has and the statistics, it does a good job explaining it. I haven't shared a whole lot of information about Kera's tumor on this blog, I guess mainly because it is such a devastating tumor, and I don't like to dwell on the negative stats and devastation regarding this disease.  I haven't wanted others to lose hope for Kera's fight. But this is the reality of the disease.  I also know that there is always hope.  There are always miracles.  God has his hand in Kera's life, and if she is to live here longer on Earth, then she will.  I am grateful for finding a woman who has been studying natural and eastern medicines for 20 years who is currently helping to treat Kera.  I feel like if nothing else, she has given me hope again.  I have decided to stop the chemo and go the natural route.  The doctors say there is no cure, there is no hope, there is no chance of survival, but there is always hope.  Nevertheless, there does need to be more done to fight pediatric brain cancer.  Here is the link:

http://www.youtube.com/watch?v=zwYYtw1sgow&sns=fb

Now for the update. Warning, this isn't going to be sugar coated.  I am going to state the facts, and those aren't always easy to hear. These past few months since late January when Kera's symptoms started to return have been SO ROUGH!!  Each week there are new symptoms, and each week there is less mobility, less talking, and more of her body giving out.  Right now Kera is not able to speak much at all.  She tries to talk, but it's very hard to understand her at this point.  She is mostly communicating by writing.  I hope and pray that her vision remains intact, as well as the use of her right hand, as I cannot imagine if she is unable to talk and see or write.  I don't want her to be unable to communicate her thoughts to me.  I ask for everyone's prayers that she remains able to communicate with us somehow. She has also recently in the past week or so, stopped trying to walk.  Her trunk and upper body have gotten weaker, and she isn't much less steady. Her legs still have some strength to them, but because her body in general is weak, and she can't balance on her own, she has stopped being able to walk.  I want more than anything to believe that she will be able to do these things again here in this life.  I know if she is not able to do so here, she will in the next life.  I also know that because of our Savior and the resurrection, her body will be restored to her and she will run and jump, talk, walk, and do back flips and tumble just as perfectly as she used to. I can't wait to see her do all of that again.
Even through all of the deterioration of her physical abilities, her mind is just as sharp as ever.  She enjoys playing games, and most of the time still wins them all!  I was so happy to spend a wonderful Easter Sunday with her today.  Friday afternoon her teachers from school brought over some amazing Easter baskets (laundry basket sized) filled with toys, games, puzzles, huge stuffed animals, candy and all sorts of great things.  They had a basket filled for each kid, plus a family basket and one for Dave and I with gift cards and money.  Thanks to all of the kids and teachers and one classmate's mom in particular who brought in the majority of the items.  Our kids were all overjoyed.  Then this morning the kids woke up to a yard FILLED with Easter eggs, toys and goodies.  There were well over 300 eggs on our lawn, thanks to some amazing neighbors of ours.  ;) The kids went out this morning to collect the eggs, and couldn't finish getting it all before we went to church.  It took them two more trips to collect all of them.  We also had Dave's mom fly in from Texas to stay with us. She was here for 6 months when Kera was diagnosed.  She was home for 3 months, and she is nice enough to come back. I'm so immensely grateful that she's here to help us out, as I've been so overwhelmed by caring for Kera and her needs, let alone 3 other boys, one being under 3!!  We spent an Easter dinner with Ann and my parents, played some games with them, and had an enjoyable day.  As I said, Kera is still able to keep up with us at the games.  She also has been having her teachers (she has two this year) come over once a week to give her hour long lessons.  she wasn't able to have them come for lessons this week, and she told me she wanted to keep them coming because she didn't want it to affect her grades.  Always the scholarly student.  :)  I told her she would be just fine.  Her teachers said they could just come for a little while and share a video with her or read a book, whatever she wants.
Seeing Kera's body give out on her has been so hard to watch.  She told me today that this might be her last Easter.  I asked her what she thought about that.  She said she has been feeling so sick and having such a hard time lately that she's just not sure.  She said she thinks she will get better though.  I hugged her and teared up at my brave little fighter.  she also told Dave and I a few weeks ago when she was still able to talk more that she didn't want to be here if she was going to be unable to talk and walk and do everything she used to do.  She said it was just too hard.  She also said that she wasn't ready to go to heaven yet.  I honestly don't think I'm ready for that either, but I also don't want to see her suffering or unhappy.
I have been diligently applying essential oils and giving her herbal pills and things that have been helpful in fighting cancer.  I know that they have been shown to help, and I want to believe that they can help Kera, but this is such an aggressive tumor.  It is a beast, and I don't know if I have the tools to fight it.  I think that God is the only one who can make it go away.
With it being Easter, it brings me such peace to know that the Savior suffered and atoned for each one of us.  He was crucified and resurrected three days later.  I know we will all be resurrected again.  I saw a video at church today, and I'm sure many of you may have seen it since it's been all over social media.  It is the title of my post #becauseofhim .  Because of Christ I can get up each morning and fight another day.  Because of Him I know my family will be sealed together for eternity.  Because of Him, we can be forgiven, be reunited with loved ones, be given strength to face our trials, have the courage to stand up for what's right, and so much more.  I will post the link to the video here.  For those that haven't seen it, and even for those that have, it's one that can be watched over and over.
I am so grateful for this Easter Sunday and for the knowledge that I have that our Savior lives.  He lived and died and was resurrected and so will we all.  All because of Him.

https://www.youtube.com/watch?v=_S3TI4bYerU

Thanks to everyone for your continued thoughts and prayers on our family's behalf.  Please keep them coming!! :)

Highs and lows

With this illness there are so many highs and lows that you feel each day that it can be SO exhausting!!  Just the caring for Kera alone right now is a full time job.  She currently has severe weakness on the left side of her body, which affects her movement of her left leg, arm and facial muscles.  She has been doing physical therapy and occupational therapy for about a month now to help her strengthen her muscles that aren't being used and to help to train her how to walk better, and  get more function in her left arm and hand.  Her muscle tone is very low and has what they call spastisity(sp?) in her muscles so they automatically want to be tight and fingers curled, arm bent, knee locked, etc.
She enjoys using the adaptive tricycle during physical therapy the most.  I want to get one for her to use at home, especially once the weather gets nicer when we can ride outside.  But guess how much one of those will cost retail?  About $3500!!  I still have to look into it some more and see if our insurance will cover something like that.  If anyone knows about these bikes and wants to give me some direction here that would be wonderful. ;) We are also going to have an assessment done on Monday for speech therapy to see if we can get some help with her learning to talk more clearly and to have an easier time eating. Right now it's very difficult to understand much of what she is saying, and I'm constantly trying to decipher what she is trying to tell me.  I've never been good at reading lips, and it's frustrating to both Kera and I when she can't tell me what she is saying and I can't understand.  She's also having more trouble eating and swallowing because her mouth muscles are weak, and she can only open her mouth so far, so of course brushing her teeth is difficult too.
One of the first things they did at physical therapy and OT was to order an ankle and hand brace for her to wear.  The ankle brace, DAFO, she wears all day, and it does help her foot and ankle stay in position and if she isn't wearing it her toes will curl up and her ankle will turn her foot in.  So I'm grateful for the brace which does help some.  The hand brace she wears all day and keeps her hand stay more open.  She wears something under the hand brace that keeps her fingers open as well.  She has been walking better with the brace, but her balance seems to be worsening, so while her ankle is supported, she needs me to hold onto her while she walks because she will easily lose her balance and fall.  This is so hard to watch.  I hate the worsening symptoms and she hates being so dependent on others to do simple tasks like getting dressed, walking to the bathroom, and getting up and down stairs, etc.  These are all so difficult.  Of course I have three other kids, so I try to remind her to be patient with me, but she often gets upset because she will be sitting on the floor because she has lost her balance and fallen, and sometimes if I'm not right there by her I don't hear her calling me because she has a hard time yelling ,or talking loud.  Can you imagine it??  It's not pretty.  I wish more than anything that she didn't have to go through all of this, but I also know that it is teaching me patience, which has never been a strength of mine.  I am constantly praying that I can get through each day without losing my mind!!!  My boys are usually pretty good about waiting until I help Kera to help them with things they need.  Except of course Ryder who is still little.  Not so little though, he turns 3 this month on the 22nd!!
Like I said in my last post, Jacob, who will be 12 in May, struggles with feeling invisible, and often he feels like Kera is getting all of the attention, whether it's by getting to go to lunch with me, (as we are often traveling back and forth to therapy or to a new lady in Salt Lake City that practices natural medicines that I am taking her to see once a week now. More on that in a minute) getting a home visit from our principal or her teachers at school, getting a package or cards in the mail, or just overall being asked how Kera is doing.  He said nobody ever asks him how he is doing.  I really have been trying to make an effort to spend more time with him, but my time is often at a premium and I'm physically wiped out by the end of the day. I have been reading the Michael Vey series with him though, which we both enjoy.  If anyone wants to do an act of kindness, a card or letter or just extra attention paid to him or Michael would go a long way!
There are two new things that we are trying that I feel will be very helpful, and which have given us all much needed renewal of hope.  One is a book and CD that my mother in law was given from a friend of her aunt and uncle in Texas who went through stage 4 cancer and beat it by doing guided imagery.  He wrote a book for children that is a story of a little boy and girl who play in the woods and the boy gets bit by a poisonous tree and gets sick. There are alpha waves that are embedded in the book and in the CD, and she is supposed to listen to the CD while she is sleeping and the left brain works to heal itself.  I'm also visiting the natural medicine woman who has studied eastern Chinese medicines and has had a lot of success with helping people who have cancer or strokes, or any serious sicknesses.  At this point I will try anything that is not harmful or too invasive.  Both of these things I have felt more confident about and more hopeful about than radiation, which they said would work temporarily and the tumor would grow again, which it did.  Or chemo, which they said from the start hasn't shown to be effective at all in shrinking this kind of tumor.   I've learned through this whole process that doctors do not know everything.  They are doing the best they can, but they do not have all the answers, and really they have no answers with this type of tumor.  I know that God has put plants and herbs here on the Earth for our benefit and to help heal these kinds of sicknesses.  I pray that Kera can get some relief from her symptoms and that we can all feel peaceful and be given comfort during this journey.

just waiting

This is kera typing. I just had to take some medicine you put under your tongue and it tasted like hot sauce. (It's called Cayanne and it's supposed to improve her circulation says mom). It was my first time trying it and it is hot. The reason I called this title just waiting is because I am waiting for a lot of things. I am waiting for my cheeks to go down because even though I am off staiords my checks are still chubby and I am waiting for those to go down. I am also waiting for Easter and a Easter egg hunt for make a wish kids on the 12th. I am also waiting for  this Sunday because my grandma and grandpa and aunt and uncle and cousins are coming to my house. my grandma that lives in Texas sent me a book that helps me think positive and that can make my brain tumor go away. I really want it gone.
kera

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.  :)

what a week

This past week has been a rough one for the Goar family.  It started out fairly well, and Kera was tolerating the chemo pill pretty well, without any nausea or bad side effects.  Then Wednesday hit, and Kera forgot to take her steroid pill in the morning.  Throughout the day she was doing okay, but she was very tired.  She slept a large portion of the day.  She told me around 3 o'clock that she forgot to take the pill I gave her that morning.  I brought it down to her bed and gave it to her with her breakfast, but she took a nap and forgot about it.  When she told me about forgetting it I gave her another one, then gave her the night time dose around bed time.  Michael went to school that day like normal, but when I picked him up he didn't look good and said his stomach and throat hurt.  He also had a low grade fever, so my immediate thought was he had strep.  Kera was having a lot of dizziness that day as well.  That night she was having a hard time catching her breath, and was struggling to talk.  When those episodes happen it really scares me.  I couldn't help but wonder if she was getting close to the end.  I just bawled that night after I put her to bed, and she slept in our bedroom too because I didn't want her far away from me.  Dave gave her a blessing that night and reminded her that she could be healed, and that her medicine would help her, as long as she had faith and if it was God's will.  The next day she was feeling a little better, but Michael was worse.  He still had a fever and he said he couldn't swallow. I had previously made a dr. appt for Thursday for Jacob because he's been getting a lot migraines lately, so I took Michael in that day as well.  The strep test came back negative, and the doctor said it was just a bad virus.  Ryder also started getting a fever that day as well.
 Jacob ended up having a migraine when I picked him up from school, so the doctor could see what an active migraine for him was like.  He really had a bad one with eye pain, and he was throwing up all day and into the night.  I wonder if it wasn't a stomach bug he had, but either way I had three sick boys and Kera and her worsening symptoms to deal with. My dad came up that day to stay with Kera while I took the boys to the doctor.  Friday the boys were still feeling pretty sick, and Jacob was supposed to go on a scout overnighter, but had to miss it. My mom came up that day to stay with the boys while I took Kera to her appt. at primary childrens.  They wanted to examine her symptoms and check her counts.  Her counts were normal luckily.  :)  I was glad because with all the sickness in our home, I was afraid she would get sick too.  She has been doing better these last few days and her symptoms have been manageable. After the doctor I took Kera to Color Me Mine to use up the last of a gift card we had.  She made a cute bowl that she said she will use for her macaroni and cheese.  These steroids she's on make her so hungry that all she wants to do is eat.  I try to keep healthier choices on hand, but a lot of times what she wants is sugar or macaroni and cheese and stuff like that.  I give her a lot of wheat toast and try to give her lots of fruits and veggies and smoothies too.  She finishes something then 5 minutes later wants something else.  It's a full time job keeping her fed!! ;)
Saturday the boys were getting better, and we were able to do some projects around the house.  Dave took Jacob ice fishing that afternoon, so he was feeling better. Kera even went to church with us today and stayed for all the meetings.  She was tired when she got home, and I notice that when she's tired is when her breathing is more labored and it's harder for her to talk.  I also think that her rapid weight gain is making it harder for her to breath and get around.  Poor little girl. :(
It was very difficult to manage everything with all my kids being sick and needing me all at the same time, but we got through it, and I'm hoping this week is much better!
 I was reading an article today from the March Ensign (a magazine our church puts out which you can check out here at www.lds.org/ensign) that was titled "Trials, Tribulations, and Trust in the Lord" by Elder Bradley D. Foster.  He shared a story about a young couple who went out on a date one night and left their 18 month old girl with relatives.  The little girl ended up falling into a canal and floated face down in the water for about a mile and was helped out by a farmer who performed CPR on her.  She was taken to the hospital and remained in critical condition for about a week.  She had many prayers on her behalf and received one priesthood blessing in particular that was talked about in the article. It said,
"While she was in the hospital, Preslee received a blessing in which she was told that countless people would be drawn to her story and that she would continue to influence others for good. When Ashley heard this, she thought her daughter would recover. “How else could she continue to influence others?” she asked.

Ashley had no idea that her blog, which has had nearly seven million page views, would continue to grow. An author of one of the many comments on her blog stated:

“[Preslee] has taught families to draw closer, love harder, look at each other a bit differently, and appreciate what they have. She has taught people that what they make big deals of in their lives may not be that big after all. Your family’s faith and perseverance [have] taught people to step back and reevaluate their own lives, and maybe live a bit differently, and with more purpose.”

Even on the darkest days, Ashley and Pat still rely on the Lord and testify of the healing power of His Spirit. They have experienced a measure of the peace that only He can bring."

I feel this way about Kera and our trials.  I know that we have learned so many important lessons throughout this whole ordeal with Kera's tumor.  I know that the Lord has a plan for our family, and that Kera's trials have brought our family closer together.  I hope that by reading about our family's trials and about the hard times we are facing, we can all stop with the business of life and take time to enjoy our children and be grateful for the blessings we are given.  Each one of my children are unique and possess their own individual spirits.  They are all so precious to me, and I know I am their mother for a reason.  I know that faith and the power of the atonement can allow us to return to our father in heaven.  I know he loves my children and knows them even better than I do, and he wants the very best for each of them.  If we remain obedient and worthy, we can all return to Him again and be together for eternity. Trusting in this and in Him is what allows me to get through each and every day.  

started chemo

Well we decided to start Kera on the oral chemo pill Temodar on Friday.  As Kera's posts have said, she started having worsening symptoms the last week of January, and the symptoms worsened to the point where we decided to put her back on the steroid.  Some of the symptoms that she has struggled with are similar to when she first started having symptoms before she was diagnosed.  She has been getting dizziness, and her left side of her body is very weak and mostly numb.  Her left arm is so weak that she can't control it much, and she has stopped doing piano for now.  It is difficult to only have one good arm.  She also has weakness in her left leg and it's difficult for her to walk as she isn't able to move the leg much.  It's been so difficult to see these symptoms return, and for the arm and leg to be unable to move.  This was not a symptom she had last time.  I really hoped we wouldn't see symptoms so quickly post radiation.  She finished treatment in September, so it was about 4 1/2 months after, that she started with these symptoms.  I am so grateful that she was feeling so wonderful for our trip to Disneyworld and for Christmas and her birthday, but I just do not want to be back here.  It is so hard to see her suffer with the symptoms and putting her back on the steroid is very difficult.  Since starting them a few weeks ago her symptoms have improved some.  Her dizziness is better and she is talking more clearly, and her walking has gotten somewhat more steady and her balance has improved, but the steroids can only do so much.  Of course the side effects are difficult as well.  She gets very mad and irritable.  Her brothers drive her nuts, and even their talking can drive her crazy.  She wants it quiet and all her senses are heightened and every sound is magnified.  Also the constant hunger is difficult to keep up with.  She has put on a few pounds and the puffy cheeks makes her more self conscious like they did before.  I know that these symptoms aren't fun, and I'm hoping she won't have to be on them for too much longer and I'm hoping more than anything that this chemo pill does something to shrink her tumor, or can stabilize it so that she isn't suffering with these symptoms.
So far Kera has tolerated the chemo pill pretty well.  The first night she took the pill she threw up in the night like she explained in her post, but each night since I have given her the Zofran before I give her the pill and she hasn't had any nausea, thank goodness!!  I have been more concerned about germs now that she is taking chemo, so I want to steer clear of places where she can pick up germs.  She is still doing school at home during the day since she is not able to walk around confidently and with the chemo it's really a risk having her there.  She was able to go to her valentine's day party at school on Friday and I came with her to help with it.
All in all Kera has been in pretty good spirits.  She gave the lesson tonight for our family home evening.  She talked about faith.  Kera has so much faith and such a strong spirit.  She said that we need to have faith in everything we do and that she has to have faith that this medicine will help her tumor.  I know that with her strong faith she will be blessed.  She read a scripture in Moroni 7:37 that says "For it is by faith that miracles are wrought; and it is by faith that angels appear and minister unto men; wherefore, if these things have ceased wo be unto the children of men, for it is because of unbelief, and all is vain."  I have felt angels ministering to our family and especially to Kera during this time of trial.  I know she is being looked after and no matter how difficult things get, she will have the Lord's help and angels will minister to her to get her through this.  I am very grateful for her strength and courage. I love my sweet girl with all of my heart and I have faith that the Lord will help her and that He knows what is best for His daughter.

some of the worst nights

this is kera typing it has been some of the worst nights for me. I really do not like going to bed because I started taking steroids and after dinner they make me hungry and I mean really hungry! so I will go in my bed at about 8. But I will go to bed at 9. Next, I will wake up about 3! and thanks to the steroids I stay up till 5 because I can not go back to bed. Then, at 6 I will go to bed about for only 30 minutes! then wait till 8 when every ones up and I will eat breakfast and its like that almost every night! But yesterday I started chemo and last night I through up at 3 then went to bed at 6,  and ate at 8. luckily at day time its not as bad and I sometimes take a 30 minute nap. I am doing okay at the daytime and my chemo did not make me fell nauseaus today and I hope I do not fell nauseaus for the four more days I haft to take it. every thing else is doing fine and mom has just been teaching me school  at home. I hope the chemo makes me brain tumor shrink or something and the chemo dose not make me fell too nauseaus.

Kera

a busy week

this is kera typing, its been a busy week. I started having some symptoms like dizziness and my left arm and leg are sooo weak. When I walk, it is hard on my left leg.  and sometimes if I walk around a lot, I will start to get dizzy and I need to stop and take a breath.  I started getting these symptoms last Saturday.  On Saturday, my dad took me and my two brothers ice fishing.  I didn't know it would be that hard, but it was hard.  Luckily all we did was sit around and wait a tug on the line, but it was hard walking back and forth to the car.  It was cold, but we had 3 layers of clothes on, and we were okay.  When we got back from ice fishing, I was really not feeling good.  I couldn't walk well, and my mom went to get the steroid pills from the pharmacy.  I started them Sunday morning, and slowly started to feel a little better.
This week my mom just taught me school at home.  One day we went to the library and got some books and movies that I can learn from.  On Friday my two best friends that live in Kaysville (where I used to live) came for a sleepover and I felt fine. Today I am feeling good and I went to church.  :)
The steroids make me mad and I have a hard time keeping my temper when my brothers are being loud, especially when Ryder sings and conducts his music at the top of his lungs!!  My cheeks aren't as chubby as they were the first time because I am not taking as much. I hope they don't get much chubbier.
Well, we had dinner and I helped my mom make some brownies, and now we are going to go watch a family movie.
Kera

A Quick Update

This week has been so insane! It is shocking how fast Kera's symptoms have worsened in just a few days.  As I said in my last post, we took her in to the Dr. on Weds. morning because she started having symptoms with her left arm being weak, and the night before our visit, tuesday night, she started to feel dizzy for the first time.  Well since Wednesday her dizzy spells have become more frequent.  She was suffering from them only at night when she layed down, and starting yesterday, Friday, she started to get dizzy in the daytime when she would stand up or move her head around.  I felt like she was good enough yesterday to go see a movie, so we went to see Frozen.  None of my kids had seen it yet, and they all really enjoyed it.  Even I have to admit it was a good one.  After the movie she was really tired and she went right to bed when we got home.  This morning she got dizzy again when she woke up.  Well she was also having more difficulty walking steady, that started up Thursday night.  But today it's the worst it's been.  Dave had planned to take the kids ice fishing.  Kera really wanted to go, and I think Dave wanted her to be there and enjoy the time, so she went.  Well, I don't know if it was a mistake because they got to enjoy some good memories, but when she got home Dave carried her in the house and when I saw her I panicked.  She did not look good at all!!  She was pale, and she could not even talk very clearly.  She said she was dizzy and we put her on the couch.  We had dinner and started our fast, and as soon as that was done I went to the pharmacy to pick up the steroid pills.  Yesterday after I noticed her symptoms worsening I called the dr. and had them fill the rx for the steroid just in case.  I'm glad I did.  After she laid down for awhile and watched a movie, she seemed to be a bit better and she could talk more clearly.  Boy I've never been so scared!!  It was pure agony seeing her like that. With the steroid pill, we are supposed to have her take it every 6 hours for the first 5 days, and since we would have had to wake her up to take it, and because it can make it hard to sleep, I decided to wait until morning to give her the first dose.  The steroid is supposed to help with swelling, and it should lessen her symptoms quite a bit.  I sure hope it works!!  I am also really leaning towards starting her on the oral chemo pill Temodar.  I want to have a her tumor stabilized so we can enjoy more time together.  I am not ready to lose her.  I know I will never be ready for that, but I just want more time, more than anything else in this world.  I'm not sure how I'm gonna get through all of this, but I know that now more than ever, I need the Lord's help.

Pictures

Disneyworld Pics from my cell phone:

 Inside the Three Broomsticks Restaurant in Harry Potter World 

where we had fish n chips and Butter Beer

 Despicable Me 2 3 D Ride

Photo Pass Pictures from our trip to Disneyworld:

Give Kids the World Pictures at Disneyworld:

Kera's star that they hung in the wishing tower

The Ice Cream Palace, where we spent a lot of time! ;)

 Kera's star is hung on the ceiling in this tower