Saturday, October 24, 2009

The Real Journey Begins

I debated if and when I would write this next post, but I felt this morning that it is something that many who have followed this blog faithfully would want to know.  Jared went in for his checkup MRI on Wednesday morning and in answer to prayers he came out of anesthesia the best he has done yet.  He came right out and downed two bowls of cereal and was quickly back into things.  The poor kid was as hungry as a horse.  It seams that all he did the rest of the morning was eat.

A few hours later the doctors returned to our room to discuss the images.  From the discussion it was very unclear how the tumor had changed exactly.  We were told that it was bigger and they offered to take us to the radiologist to discuss the images while looking at them.  I don't think I will ever be able to get those images out of my mind.  When people say that pictures are worth a thousand words it is more true now than it has ever been.  The tumor was all over in his head and now extended all the way down the cervical spine to the collar bone.  It is unsure whether or not the tumor has metastasized anywhere beyond the collar bone due to lack of imaging beyond that point.  The brain stem was pushed over like a shepherds crook and it was very apparent that this tumor was not stabilized as we had hoped.  Each glance at the extending parts of the tumor quickly became more than we could handle at the moment.

We sat down with a group of PCMC physicians in which we discussed ways of extending Jared's life.  Discussions were no longer of cures and long term solutions, but of what could be done to prolong the inevitable.  Upon leaving the hospital, that afternoon we quickly overnighted all images to Boston.  We wanted Dr. Liebsch to tell us his thoughts before we accepted anything.  We spoke with him Thursday night and our fears were confirmed.  He did offer us a very rigorous radiation treatment that did not guarantee Jared any recovery from the tumor.  He simply said that this tumor "is in a league of its own" based on how aggressive it is.  While he could not guarantee any recovery, he did let us know that Jared would be severely impaired in many ways as a result of the radiation.  While we did not let Dr. Liebsch know immediately we felt that there was no way we would submit Jared to all of this.  I can say that I am so very grateful for the honesty and candidness of Dr. Liebsch.  He truly is an amazing doctor and we know that he was placed in our path for many reasons that I will not discuss.  Dr. Thiele from Boston has become one of Jared's biggest fans and went above and beyond her responsibilities as a physician to be there for us and our son.  We will be forever grateful for the love and care that she has displayed.

My heart is so incredibly full to say that we have decided to enjoy the remainder of our sons life without imposing any further treatments.  Many might think, "go for broke", but I can assure you that this is not what we are to do for Jared.  Jared is a very special child and we are anxious to be able to relish the time with him. 

I just cannot say enough about how absolutely grateful I am to have the blessings promised to us in the temple.  These are the most cherished, hopeful and inspiring promises that have supported us in all of this.  We have ached and we have cried, but our faith in our lasting purpose of this life will continue to buoy us up.  We thank you for your friendship, love and support and have felt your sincere prayers in our behalf.  Jared is so very loved and we hopefully have many laughs, stories and Legos to build before our time is cut short.  May the Lord bless you all for your charitable hearts and faith.

33 comments:

  1. Thank you for updating us. We are sorry to hear of these latest developments. Our thoughts, prayers, love and concern are with Jared and your family each day. May the Lord continue to give you the strength you need. Families Are Forever! We love you!
    Stacey and David Mortensen and family

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  2. What a heart-shattering moment.

    I am very grateful for the special knowledge we have of the Plan of Salvation.

    To have your child return home early, sigh, there are no words I have to ease the pain and ache that you must surely be feeling. But to have a child return home early as perfect as when he came to you........that thought, that testimony, in time, can warm a small spot in this unthinkable task ahead of you.

    My heart and prayers are with you.

    Love, Em

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  3. you obviously have an amazing little boy. you will continue to be in our family's prayers as you have been for many months now.

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  4. this brought me to tears and i hope and pray this time with your son is full of joy and the hope and peace found only in and through the gospel. he is yours forever. what a sweet boy. you are all in our prayers.

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  5. Yes, thank you so much for the update. We've been anxiously awaiting this post. We were so very hopeful things would take a turn for the better and are so sorry to learn of these latest developments. We love you guys so much and our hearts go out to you as you begin this very real journey. Please give Jared a BIG hug from the Patchett's, we are SO extremely proud of him! Thank you so much for your examples of strength and faith anchored in the gospel of Jesus Christ through all of this. May the Lord bless you with many lasting and cherished memories. Our prayers are with you!

    Amy and Keven Patchett and family

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  6. We will continue to pray for your family and especially for Jared. My heart aches for what you face, but having the eternal perspective is what gives you peace in your decision. I hope your coming days will be filled with love and joy and peace. May you feel the love and comfort of the Holy Spirit.

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  7. Dearest Spencer and Andrew,

    Thank you for sharing this posting, our hearts go out to you and to Jared. What a blessing Jared is to you and your family! What a blessing you and Jared's siblings are to him. I know you profoundly rejoice in having him as your son and I can't help but think how our Heavenly Father and the angels rejoice as to how you have mutually blessed each other besides so many of us watching from the sidelines.

    Someone has wisely suggested that the sadness and grief one feels when an exceptional person, man or woman, fails, falters and deteriorates so as not being able to help, bless and love others. I suspect that there are few things so excruciatingly grievous for a parent to observe such a thing in their children.

    Jared has knocked a home run, early in the ball game and as such will be transferred to a professional team. He needs not play alley-ball again and this knowledge must thrill you in spite of the pause in your personal association which is ahead.

    Your burden, our burden, is to follow in Jared's footsteps in goodness, faith and steadfast devotion that we too, may be transferred as Jared will experience

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  8. Our hearts are breaking for you! We continue to pray for Jared and your family. We love you!
    Craig and April Burton

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  9. We are so heart broken to hear this recent news. We will continue to pray for your family and Jared. We have been so amazed by Jared's and your family's strength and eternal perspective throughout this experience. We pray you will continue to be buoyed up by our Savior your incredible faith. We hope you are able to have/create many cherished moments and memories. Jared and your family is an inspiration to us all. Thank you for sharing with us. We love you!

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  10. I am so sorry to hear your latest news, but also take great comfort, as I know you do, in the "Plan of Happiness" of our Lord and Savior Jesus Christ. The happiness part may seem far away right now, but how wonderful to be able to see past the pain for all of you to the glorious future. My prayers are still with you all, and a hope for many days of laughter, fun, love, and hugs ahead before you send your little pioneer ahead to decorate your mansion for you in the hereafter. I wonder what eternal mansions look like that are decorated by children? They must be wonderful!!
    Still praying for the best for all of you, and lifting you up in prayer daily,
    Linda, 11th ward

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  11. Jared has forever burned a spot in my heart. My life has been enhanced by the few moments we spent together. In this life or the next I look forward to the day I meet Jared again! - Mary Kim

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  12. Andrew and Jaime,
    I attempted to call you tonight and I have been meaning to call you for sometime. I have an old number of yours that no longer works. I am sorry to have put this off. Andrew I consider you one of my best friends that I have ever had. You and Jaime are amazing people and I look up to both of you. Mine and my families prayers are continually for your family. I know we have not talked much in a while but I feel that I know you specifically very well as a person. You are someone to be respected and admired for the life that you live. I have learned from you how to be persistent and happy during many different circumstances. You are also one of the easiest people to trust that I have ever met because your are completely honest, kind and I never heard ill from you about other people. What I am trying to say is you and Jaime are amazing people and live lives to be respected and honored. My heart goes out to you tonight and I pray that you will find peace in your heart during all times of your life now. Knowing you Andrew I know that you have turned to the Lord and received all the guidance you need. Despite that I would like to share with you some scriptures that have always brought me clarity during difficult times. All of these scriptures come from when the Prophet Joseph was incarcerated in Liberty Jail a time when he was tried greatly, D&C 121-123. In Sec 121 vs 1-5 the same Joseph Smith who had seen God and Jesus Christ and conversed with them was brought to write "Oh God were art thou? And were is the Pavilion that Covereth thy Hiding Place?" Even the prophet Joseph was brought low to this point to ask the Lord this. Then the Lord Responds vs. 7-9 "My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shaft triumph over all thy foes. Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands”. Then in Section 122 we learn from that “all things shall give thee experience and be for thy good.” No matter how insignificant or large the task the Lord teaches us through experiences, that is the only way we learn and grow. Then in Section 123 vs 17 the lord teaches us a very important lesson “Therefore, dearly beloved brethren, let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed.” From this I have learned I can only do what the Lord has placed in my power to influence and after that we must “stand still, with the utmost assurance” and truly put our lives in the hands of the Lord. The lord is in control of all things and he loves us, he is our Father in Heaven and we are his Children. Andrew I shared this with you because I consider you one of my best friends and I care greatly for you. I did not share this with you to council you in any way but to express what has helped me in times of need and I did it because I love you. If you ever need someone to talk to or need help in someway that I can provide please call I will do my best to help.
    With Love
    Dan Stubbs 307-360-6687

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  13. I have no doubt that you are doing what is right for your little man. He is an amazing little guy and must have a different mission to fullfill in the next life. I am amazed and humbled at your strength and I can't imagine what you are going through. The Lords promises are real and thank goodness we have those to cling to. We will continue to keep you in our thoughts and prayers. Please keep us updated and let me know if there is anything we can do. We love you all.

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  14. I am a friend of Sarah's and I just wanted you to know that my prayers are with you and your family. God bless you.

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  15. Oh, my heart just aches for you...Jared is such a special little boy. Your perspective in all of this continues to amaze me. I loved your comment in the previous post about a miracle that suits Jared's needs - I think we can all benefit from a reminder that only the Lord can see the whole picture and knows what is truly best. Our thoughts and prayers are with you.

    Love and {{hugs}},
    The Gregersens

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  16. Jaime and Andrew,

    The strength of your faith is an inspiration to us all. Your trust in the Lord is such a blessing. That trust is not misplaced.

    May you continue to feel the strength and comfort of His arms around you through the difficult times, and the joy of Jared's eternal spirit at all times.

    Please know that you are loved so much...by us, by so many, and by our Heavenly Father. Our family is dedicating a fast to you today (Julie's idea), that your family will enjoy many happy and beautiful memories in the coming days.

    Love,
    Jeff & Janet Beck and family

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  17. Jaime - I have mostly tried to stay back as I've followed your past year. But my husband and I both have been affected greatly by your willingness to share your experiences so freely. A year and a half ago, when I first learned you were back in Utah and I realized how close our kids were, I hoped we would have the chance to get to know each other again as we did better when we were kids. Your world since then has been a whirlwind that I can't even imagine. Throughout that time, however, your candidness on this blog and your display of strength and faith continually reminds me why I'm so drawn to your company in the first place. I feel that you have given me so much and lifted me so much. All I have to offer in return is to stay back and let you and your family fully experience this time together. I just couldn't sit back this time, though, and not let you know how deeply I have felt these experiences and how much I have learned from you and learned to love you and your family. I think these times help our spirits remember a bond from beyond the veil when we all knew and loved one another. So, cousin in this life, perhaps, but thanks for opening all the hearts who follow this blog to remember 'brother' and 'sister'.

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  18. Andrew and Jamie,
    Our thought and prayers are with your sweet family. We are so impressed with your faith and goodness. What wonderful parents and what a great little guy Jared is. I'm so thankful that we know that families are forever. I think back on those last days, weeks, and months I had with My Brother and I cherish them. So many of them are happy, positive, and even a lot of them are funny. And that time definitely strengthen my testimony and my ability to Trust in the Lord. D&C 123:17 Was a scripture that strengthened me. You are wonderful and I know that these months will be ones to cherish even through the heartache. Our thoughts and prayers are with your family. We hope that these months are filled with many tender, sweet, and fun memories. We Love You. The Oborn Family

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  19. As a fellow Chordoma patient I have been following Jared's journey with hope. Now I see we must adjust our vision and I understand. Dr Liebsh treated me and so many others and he IS a very special man, no question about that. Please keep us posted on Jared and the family as we do care and send our most positive energy your way. So many of us are still fighting but it is a very hard road. Sharon/NYC

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  20. First time seeing your blog. Hearbroken, but feel you are doing the right thing. Prayers.

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  21. Being a clival chordoma patient myself, I know that the road can be rocky at times and that it is truly ones faith that lifts you up from day to day. You are an amazing family, full of love and tenderness in every word that you write. Jared is fortunate to have these precious years with such a wonderful group of loving and faithful people to surround him. I thank you for sharing what must be the most heart wrenching time of your life and I pray for inner strength for all. Let God provide you with peace and who knows what the future may hold. I will keep you each and all in my prayers. With love and abiding peace.

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  22. Thank you so much for sharing your story, Jamie and Andrew. You are in our hearts and prayers. What an incredible blessing to have Jared in your life. Your strength is inspirational.

    Rhea

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  23. We love you so much Vance family. Our prayers are with you and we miss you so very much! Thank you for updating us and sharing your personal thoughts and actions. It means so much to us. We will continue to pray for you our dear friends....
    Love,
    The Snow's

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  24. It's hard to know what to say at such a time. Ella has been so excited to report to me when Jared is able to attend their primary class. His friends are certainly cheering him on. I've seen a brighter picture of God's love for Jared and your dear, sweet family through reading your posts. God gives us a glimpse of his love through our children. I pray that Jared will be comforted in body and spirit.
    Jen Kotter

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  25. I didn't realize all this was going on until a posting in the relief society bulletin. You guys have been through a lot and have much to go. We will keep you in our prayers. Jamie, I remember a conversation we had when B. ultrasounds showing abnormalities and I was concerned about M. condition. Your faith at that time was a real inspiration to me. Now it is time for me to send a little of that your way. There is a plan for each of us and we grow from each challenge. We will be praying for comfort for your family.
    Missy Creasy

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  26. Jared is our favorite Super Hero! And His parents are amazing as well.
    You are constantly in our thoughts and always in every prayer.
    May Gods Angels attend you at this time. May you feel the peach of the gospel in your lives.
    Love you!
    Jo

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  27. Thank you for coming to my blog...for commenting and loving a stranger. Your story is heartbreaking. I love you! Look what you are going through...I know it hurts. It hurts and it opens your eyes to a new way of life. A new meaning of life, doesn't it? I'm sorry for your pain. I marvel at your strength. I send my love.

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  28. Jaime,
    I am heartbroken to hear of the latest news on Jared's condition. I cannot imagine as a parent what you are going through, and the strength you must show for your little boy. I wish you continued faith and strength that Jared will be comforted in the love of his Heavenly Father, and the knowledge that you will be with him again. You are truly an inspiration to me. My thoughts and prayers are with you and your sweet family.
    Jillanne Snow

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  29. We want to thank you guys so much for keeping us informed and up to date. It breaks our hearts to hear of this most recent update. Jared is such a little stud, and while we have only met him on a few occasions, we have so much love for him and he has taught us a great deal about courage. We continue to pray for you everday.

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  30. Please let Jared know that he is our Hero. What an amazing child, and what incredible parents. I have read and reread this post so many times over the last couple weeks, and each time I can barely breath. How grateful we all are for you guys and the example you all are to us! Thank goodness for our Savior and the gospel. We too, hope that you guys continue to have many good moments together right now, and forever more.

    WE LOVE YOU!

    Paul, Meg and boys

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  31. We join with so many who pray for Jared and pray for each of you. It was a great blessing for me to be in your home a few days ago. I was blessed by your faith and courage.

    Brent & Kelli Hintze

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  32. You are amazing Jared & Jaime. We are praying for you all.

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  33. What heart-breaking news! Our thoughts and prayers are with you! What a sweet and special boy Jared is and what a beautiful example of faith you all give us. We love you!

    Mark and Amy McLaughlin

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