Wednesday, February 17, 2010

A State of Consciousness

Last night was not easy. At about one in the morning Spencer was crying because he had thrown up all over. All over the floor, his bed, himself. We had to strip his bed and change his clothes and have one of the housekeepers come and clean it all up. That took about an hour. I held him on my lap and stroked his hair, his hair that will not be there for very much longer. If you know Spencer you know, that since he was born his "signature" is his hair. That boy has some wild and crazy hair. When I get home I will post pics of his cool hair throughout the years. Anyway, as I am holding him he says "I wish I was in my bed asleep and that I never threw up." Followed by a whisper "I wish i didn't have rhabdomyosarcoma". I just held him tighter and closer to me and told him "Oh honey, you have no idea how much I wish you didn't either." I was informed this morning that he has Stage 3 Group 3 Rhabdomyosarcoma. Once again, do not look it up online. Each case is so different and the online descriptions of stages and groups differ so much from cancer to cancer and from person to person. Stage 3 in his case means it has disrupted the Central Nervous System. The nurse practioner, Dayna, who told me this, said she would give me literature on it and describe more in detail what puts him into group 3, later today. For a moment I panicked, but my state of instability became more dense. I feel the peace and hope that my son will be filled with healing and comfort.

9 comments:

  1. i am hoping and praying like crazy for him and your family. i know we have not seen each other ina really long time but I feel like we are still good friends. Love you guys and i check your blog every day at least once. Come on Spence you can di
    o it. You are a super hero after all!!! You can do anything!!!

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  2. Holly, stay strong. You are totally amazing and inspiring. We are praying for Spencer and you.

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  3. You don't know me - my husband works with yours. But I wanted you to know how inspiring you and your family are to my family. As I follow your blog the spirit touches mine in such a strong way. you have no idea how much you are inspiring others with the faith you have to go through this trial. Spencer is amazing - if only we could all have his faith. He has taught me so much already. Thank you for making this blog - stay strong, the Lord is on your side!! LeAdelle Maez - wife of Trent

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  4. My parents (friends of Thayne and Cindy) just told me about what's going on and about this blog. I don't know you Holly, and I haven't seen Nate in years, but I wanted to let you know that your family is touching our lives as well. Your faith and strength are truly inspiring. My heart aches for your family and we will keep you in our prayers. May you all receive the comfort and strength you need during this difficult time.
    Love,
    Lisel (Sorenson) Zito

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  5. Lynette & I were just talking about how awesome this blog is, Holly! You are not only recording this journey for Spencer & your family, but you are giving strength & hope to so many people by sharing your story. We love your family SO much and I'm so glad you are willing to open up about your experiences. Spencer is so loved...cancer or no cancer!! You have inspired us all :) We love you!!!

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  6. Holly, I have a nephew with esophageal cancer that has now metastisized to his liver..in his 30's with 4 kids. My niece has kept a blog about all their experiences and you'll find this a comfort and inspiration to you and EVERYONE that reads it. Someday, when Spencer is well and driving you nuts as a teenager, you will be so happy you kept this blog. It makes the rest of us so grateful for our lives and so much more compassionate to others around us. Hope to run into you when we get home from Boston in 3 more weeks. Karen

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  7. Hi Holly, you don't know me either but I am good friends with Kevin and Dale Richards. I grew up with their kids. As I have been following Kevin's fight with cancer and they have asked for prayers on behalf of your Spencer. I too have a son named Spencer and when he was born we didn't know if he would live or die. 10 years later and countless surgeries and hospital stays, he is a healthy, happy, active boy. Your story brings back so many memories and swells of emotion. I will continue to pray for you, Spencer and your family. I too live in UT and I'm sure you have many friends and family to lend you support, but if you ever need anything I would love to help. :) 801-885-4623

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  8. I can't believe your strength. As long as I have known you, you have been such a strong and determind women. Spencer is lucky to have you as his mom. Thanks for the updates. You are in our prayers.

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  9. Holly I don't know if you remember me from Wasatch Arts, but you, Spencer and your family are in our prayers. What an inspiration you are to us all. If there is anything we can do to help (watch your children, clean your house etc) please don't hesitate to ask. Marni Puzey

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