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Sunday, April 10, 2011

Walking the Walk

We caught a break two weeks ago when testing of Raina's spinal fluid revealed that the first round of chemotherapy cleared the tumor cells that were previously present. This would seem to bode well for the results of the elusive MRI that is now scheduled for Tuesday afternoon. However I'm sure anything is possible at this point. We entered the hospital for the first round of chemotherapy expecting a 10 day stay and didn't walk out until 6 weeks later.

Now back in the hospital after a few days at home, with that MRI looming and two rounds of chemotherapy behind us, we are starting to fray a little at the edges. The past four days have felt like four weeks as we try to prepare for and at the same time distract ourselves from what is waiting on the other side of Tuesday.

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In the 14 months since Raina was born, she has grown from a squirming, cooing creature to a little person ... a gentle old soul that waves at strangers and gives out hugs and kisses with reckless abandon. Somewhere along the way she also became our best friend.

Courtney and I have previously agreed on what we are, and are not, willing to do to beat this tumor. I wonder now, when it comes down to it, whether we'll be able to make the important decisions in the face of the overwhelming emotion that is creeping up.

11 comments:

  1. Hi There…

    It is hard to know what exactly to write in this comment section that appropriately conveys what I would like my words to truly say. Words are a hard thing- sometimes they are jumbled, or not strong enough- I just hope that when reading the words that I leave, and others like me, it conveys the support, encouragement, and hope that many of us share and hold strong to for that little girl of yours.

    Faith is a hard thing to wrap your head around- or at least for me it is. You mentioned before about how you have a re-newed sense of it when Raina laughs or smiles at the end of a rough day- that is where you both will continue to find your strength- what you will need to continue on this journey that seems to have no true map.

    I will continue to pray for you both to remain strong, and for Raina- to keep smiling and fighting!

    Take Care-

    Erin

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  2. I am so happy to hear about the results from a couple weeks ago!! I sure hope that is a good sign for tomorrows MRI. We will be sending tons of positive thoughts and prayers!
    I totally understand what you are saying about Raina being your best friend. It is something you can't ever explain to someone until they have children. They are amazing little people with huge impacts on our lives. You realize how much love you are capable of. The thought of losing them is unthinkable...and knowing that you are going through this really breaks my heart. I love you guys and can't wait to see all of you!

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  3. I have to echo Erin's thoughts. I cannot express my thoughts/feelings well enough with words. No combination of words ever seem to convey what I want to say.
    So, I will just say that we are constantly thinking of you and sending extra positive thoughts and prayers to help you with tomorrow's step in this journey.
    Jennifer, Brian, & Kendall

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  4. Like others ahead of me - there are no words. I think and wonder and pray and hope. This is a great week for some Universe ass-kicking news... just focus on that bridge first. Every positive vibe I've got is pointed to you all.

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  5. Like all have said before me, I am keeping you and Raina in my prayers.. I guess the best thing to do is take everything one day at a time like you havce been doing.. I feel like I dont have the right words to convey to you because I have no idea what you must be feeling right now, all I can say is that I will continue to keep you and your family in my prayers as I am sure so many others are also. I will pray that the new MRI will be good news.. Please give Raina a big HUG and KISS from me.

    Love, Martine

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  6. Jason & Courtney,

    You two are AMAZING. The perseverance you have already shown is far and beyond what most are capable of. You are doing everything in your power to make Raina's day to day experience an enjoyable one. Creating a 'tree house' out of a window sill and brokering deals with 'your captors' are just the most recent examples of the wonderful parents you are. Your best friend is lucky to have you both.

    The intense emotions that are creeping in are normal, rational and justified. If you weren't afraid of tomorrow and what lies beyond you wouldn't be human. Your perception and vantage point have changed since this started. It is different to make decisions based on theory and someone else's experience than it is to make decisions when you are in the thick of it. You are stronger than you think. If nothing else have confidence that you have and will continue to make the right decision for Raina....even if the decisions change over time.

    Tomorrow is a big day, nothing any of us can say will change that. You have been holding your breath since the chemo started, waiting for information to come, hoping it is good, fearing it will be bad. We all wait and hope with you. The love, energy and support on this blog is so positive and heartfelt. Know that if there were a way for us to make the time pass faster and an ability to assure positive news, we would do that. I agree with Jodi, this is a great week for some Universe ass-kicking news. Let's go get em!!!

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  7. Raina-- its the silliest thing, but without ever meeting you I feel your special presence. I too have a 14 month old, born only a week or two after you, and since I feel like little ones have a closer knowledge of who God is and how he works, I talk with my little guy every evening while he is nursing before bed, and tell him what I have "seen" you do today and ask him to pull in some favors from the guy upstairs. I just know one of our prayers has got to be answered.
    If there is ever anything we can do or send, a hot meal, some fun new toys, happy songs....something to makes things easier or better for you, mom or dad, there are many of us strangers out here that would love to help if you say the word.
    With many prayers and much hope for a great tomorrow...

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  8. To all of you, in my heart, thoughts, and prayers so much more than daily, wishing you all the best of news tomorrow and every day after.
    Many hugs to every one of you,
    Emily B.

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  9. Jason and Courtney,
    Kristin, a friend of ours, pointed me to your website and asked me to pray for you and your family. Raina is a beautiful girl, and I send prayers to God tonight for healing, for His grace on you through the MRI and the results you get. My heart hurts thinking of all you have been through and how quickly our lives can be changed. I will pray tonight and throughout the day tomorrow, and await hearing from you!

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  10. When I think of Raina, I think of pink. I'm wearing a lot of pink today!!

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  11. These posts above are a great example of how many people are praying for you guys! Loved ones, family, friends and perfect strangers! If you guys only knew how many people hold you closely in their hearts and pray daily for your family... So many people are touched by your love, your dedication, your perseverance.

    I am so encouraged by Raina's first round of tests. The prayers are WORKING! She is so lucky to have parents that work so hard to make the most difficult situations, FUN! Depsite your exhaustion and stress, you guys always have a smile on your face when you are with your little girl. Raina is feeding off of your love and positive energy. I have to imagine that is not an easy task. You guys make it look effortless.

    Every time you feel overwhelmed with fear, anxiety and stress...close your eyes and try to feel the huge bubble of love and support that surrounds you.

    Love, Danielle

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