Thursday, November 11, 2010

Update

I am continuously reminded by the comments, emails, phone calls, and letters that we are not alone in this journey, but accompanied by hundreds and hundreds of people who are loving us and pouring their hearts into our lives on a daily basis. Please know that although I seldom reply (not out of a lack of gratitude but sheer time) we greatly appreciate all of the support!

This morning I realized that I had not posted in several weeks and that folks might start wondering if all is well. To our delight, all is well! Since leaving for the beach house, we have spent the last number of weeks just spending time with our family and friends and building memories. We have been so fortunate to have this time and Nina has enjoyed every minute. I have also tried to reestablish my routines with Teddy. Sine the beginning of treatment, I was so focused on what and how Nina needed to be taken care of that I pretty much relinquished all "Teddy" responsibilities to Todd. Todd is a wonderful father and Teddy has greatly enjoyed all of the extra "dada attention" but the reality is that he was noticing my absence. Right after Halloween, he told me he missed me! My heart burst and I recognized that my children need their mama equally...so I am learning that it is okay to have friends and family help more with Nina and Teddy is having more "mama time" too!

Currently, Nina is doing very well, all things considered. She started chemo at the beginning of November and has responded nicely with few side-effects (primarily fatigue and dizziness). When we were at the beach house, her symptoms started to return so we have had to increase her dose of steroids again, causing a bit more weight gain and moodiness. We also had the MRI last week and got the results back. I will talk about the results in more detail, but in essence Dr. Slomiany said it best when he described them as a "mixed bag". Bottom line, the actual volume of the tumor has not increased (this is good) but the necrotic center (middle of the tumor that is dying) has increased (this is not good). There was no shrinking of the tumor in response to the radiation but then again we were never told that would definitely happen. So....the take home message was that we have some time and it looks like we will definitely have through the New Year! I am very, VERY thankful for this news as strange as it may sound. It could be worse!! And the fact that it looks like we will have the holidays as a family is a huge miracle itself!!! It's not what everyone has been praying for but it is a miracle nonetheless and I will take it with complete happiness, thankfulness, and joy!

So....please continue with your prayers and know that our family appreciates all the love. I have included a very silly video of our Nina! She is so strong and soooooo silly!!! Over the past month she has been snorting like a goof-ball. In fact, she has been snorting so much that we've been calling her "Tinker-Piggy" :) I thought everyone would enjoy seeing her sweet facing and hearing her darling voice!


9 comments:

  1. Dear Rosy~

    Praying daily..(hourly...) indeed we are! What a perfect little summary and update to how everyone is doing. Blessed you are, in many ways for sure but certainly with the "time" you have been given. Seeing you last night, and Nina's beautiful smile was a wonderful gift to me. I thank you for your time...as time is so precious!I am blessed beyond belief that God has given me the chance to help....even though the task is so small. ~:) Nina and Teddy are so lucky to have you! Continue to take care and take a hold of God's hand every chance you get, as he does continue to reach out to you every moment of every day. Enjoy the moments.....
    Love and Hugs Always!
    ~Amy GVNS

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  2. I've been thinking of you and your family constantly, and am relieved to learn that you have simply been enjoying time together! What a gift! The Vernons prayers continue to be sent your way, and we love hearing updates about the miracle that Nina is to you, and everyone else!

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  3. Thank you so much for this update! I look forward to more updates to your past weeks' adventures, but at least for now I am glad to know all is "well" and know how to pray for you, Nina and your boys!

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  4. Thank you for writing, Rosy! Nina is so silly and adorable in that video - what a brave and happy little girl! Continuing love and prayers to you all.

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  5. i am one of the many who don't know you but love you and pour my heart into prayers for you and your family every day. thank you for updating, i am so happy that things are going well!

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  6. Great news Rosy, I have been hoping for the best- glad to hear you are enjoying life each day - thinking of you- and Miss Nina is quite the prize snorter!

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  7. Oh Rosy! I'm so glad you posted an update! I've been praying for you and your family. So happy to hear you're enjoying your time as a family. With the time change, and the cooler weather, we've all been spending more family time. I've been checking your blog daily hoping and praying for the Fredeen family, and hoping for a simple update. Thank you so much for posting.
    The other night we were playing a game at dinner that we call "topic". It's a game I purchased online that gives conversation questions for the dinner table. The question of the night was "What do you remember about the first day of school?". Ashton was so excited as he remembered his first day at GVNS- he said he remembers playing with Colton, and he remembers meeting Teddy for the first time. Those boys seem to have a good bond.
    It's so funny you posted Nina "snorting", Kacey's been trying to learn how to "snort" the past few weeks- it's a lot harder than you think! She can snort by accident when she's laughing but cannot snort when she's trying too! Very impressive Miss Nina! Bravo!!!
    Hugs and Kisses to your family!

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  8. Oh so great to have an update. I have been checking every day and praying. So glad that you are feeling so joyful.

    Continuing to pray for you family!

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  9. Thinking of and praying for you and Nina all the time. Great to see the adorable snorter :-)

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