Saturday, April 30, 2016

The Final Answer

We got the news we already knew.  The pathology is a Glioblastoma Multiforme 4.  That is the most aggressive tumor there is.  Sadly we were told that they have proof that the tumor was caused by the radiation he had 8 years ago.  The double whammy was that they did another MRI this week and the tumor is almost as big as before surgery and it looks like it is pushing the brain out of its normal location too.  That means it is fast growing and even more aggressive than normal.  With this information they are thinking 90 days is top of how long he has.   The doctors suggested radiation as a possible treatment.  We went to the appointment with the radiation oncologist thinking that was a route to try.  However we have prayed and it doesn't look like we are going that way.  It was so hard on Josh the first time and he doesn't want to do it again.  Also it is a six week commitment every day and if it only buys him 2 months what was the point.  The biggest factor is that Josh is so tired already we just don't think he could handle it.  If this treatment could offer a cure or even promise a reasonable amount of time we would do it but there is no guarantee that we will get anything and the cost is high. 
I am very calm and peaceful.  It doesn't mean I am not losing it, I showed up at a friend's house and cried for 40 minutes.  What it means is that I am confident that Heavenly Father is in charge.  We will trust him and enjoy every day.

On to better news.  Tonight Joshua was honored by the Boy Scouts!  They have a dinner called the Gathering of Eagles and we attended and the council recognized him and presented him with an award.  They are sending a scout that could not afford camp on their own to camp in Joshua's name.   They told his story and when they were done the people who attended the dinner (about 200) spontaneously gave him a standing ovation.  Seeing others recognize him was so wonderful!  We managed to surprise him and it was great to see him blush and smile.  After the event people could not wait to shake his hand and tell him they thought he was amazing.  A couple even wanted pictures!  It was a good day and we spent it as a family.  We want more of those for sure but this one will last for a while it was so fun.

I would ask you to keep smiling, have fun, and remember what is important.  We are enjoying every minute we have and are greatful to have them.  We love you and appreciate the support.   This journey is hard and so many of you are making it seem easier with your love and food, and visits.  We love you all.



14 comments:

  1. I know that you havw received impressions for years about this time. I also know that it is still hard! You know I love you beyond anything and my family's hearts are breaking. CJ keeps you and Josh in every prayer she utters! Today you will all be in our fast. Love you friend!!!

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  2. What a wonderful family picture. Your love for one another humbles my heart. You are all in my prayers. I am so thankful for my testimony of families are forever. I love you all.

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  3. What a wonderful family picture. Your love for one another humbles my heart. You are all in my prayers. I am so thankful for my testimony of families are forever. I love you all.

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  4. Your family is honestly an inspiration to me. I love you guys and wish the best for all of you. You are in our prayers. I wish I could be right next to you at this time and but know I'm sending a hug from far away. Take care!

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  5. That picture is awesome! We were reminded in church today that when we look back on our lives, we see that in reality, nothing is random. God knows it all from the beginning to the end and people and experiences are in our lives for a reason. I'm so glad Josh got to stay the extra 8 years and be the big brother (and an amazing example.) hugs, rr

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  6. Tell Josh that he is never far from my thoughts and always in my prayers. I love him like a brother and is one of my bestest friends (excuse the grammar error). This has all been really hard for me especially since I'm so far away. And because its been so difficult for me I can't imagine what its been like for all of you. Tell him i'm going to come and see him soon, as soon as I possibly can. Love you all.
    Love Heather Durfee

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  7. My dear Ruth and Gordon,
    From a very long distance we send our love and prayers. The blessing of social media is that we would have never known about this and we have been praying. Your words give me and others strength. May angels surround you and your family through this. May the Spirit encircle you all with comfort and peace in those private moments of despair. And may Josh know how loved he is by his Heavenly Father and all who know him.
    Lots of love,
    Bonnie Jones

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  8. My dear Ruth and Gordon,
    From a very long distance we send our love and prayers. The blessing of social media is that we would have never known about this and we have been praying. Your words give me and others strength. May angels surround you and your family through this. May the Spirit encircle you all with comfort and peace in those private moments of despair. And may Josh know how loved he is by his Heavenly Father and all who know him.
    Lots of love,
    Bonnie Jones

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  9. What a wonderful picture! Although my heart is breaking, right along with your's I also feel very blessed to have known Josh and all of you. My love and prayers will never cease. Please do me a big favor, Ruth. Please give Josh a big hug from me. He will not know who I am. Just tell him I am a sister that was in awe when I witnessed the light of Christ shinning from him as he served the sacrament on Sunday's. Then kiss him on the cheek as well.

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  10. We are continually praying for your family. I, like Cynthia Hughes have always seen that light in Joshua's eyes. He is indeed a special spirit of our heavenly father. God Bless everyone in the Jones family. Love you all ��

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  11. Hugs...hugs...hugs...we will pray and cry with you. Love to all.

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  12. Dear Ruth.... We want you to know you, Josh and your family are in our thoughts and prayers. We're so sorry to hear the news. You have been blessed with such a special and gifted child with your son,Josh. He's brought so much love and joy to others throughout his young life. Our Heavenly Father is reaching down right to you and your family wanting nothing more than to see the joy he's filled Josh's life with. Create your memories one memory at a time, and through this journey remember its good to have an end to our journey, however it is the journey that matters in the end. We love you and we're praying for Josh, you and your beautiful family during this time. We love you. Love, Maureen Tomko and Jim

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