Thursday, July 2, 2009

It's Late, I Know:(

Matt's good friend from high school and his wife are in town this week, so we had company tonight. I'm just sitting down to the computer and at the same time wish I was snuggling into bed!

No news today. I didn't hear back from Sloan, as I had emailed them yesterday. I'm planning on calling tomorrow, although I'm not sure who I need to call. I'll start with my surgeon's office and see if they can direct me to someone that can help get Brady's scans scheduled. As far as our concerns with Brady this week, he is such a little mystery. He is very clingy one minute, and then chasing Eli around the house giggling the next. His tummy seems better, but his rib still looks funny to us. The feeling I got from Strong was that all they would do for us is schedule as scan, since there is no way to know if something is wrong without doing a scan first. It is reassuring to know that his urine levels (catecholamines) were collected in May and were normal. So I'm focusing my attention on getting a scan date for August at Sloan and just watching him like a hawk in the meantime.

For months I've been able to focus my prayer life on a whole lot of praise for all that God has done to heal Brady and bring our family back together again. I'm NEVER going to stop doing that, until my dying day!!! But, as I feel the grip of fear rising in me, I'm praying like I did back in January for God to show His awesome power and to keep this cancer away from Brady. I even felt a little bit bitter for having to pray that way again. Please keep our family in your prayers, that we will continue to trust God even in the scariest of circumstances and that His peace would pass all understanding as we continue on this roller coaster.

5 comments:

  1. Prayers and hugs out to you. Have a wonderful 4th of July filled with good news!

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  2. Megan,
    I would encourage you to continue to call back daily, or even twice a day until you get a response. I have found that in these situations it is definitely the squeekly wheel that gets the call back. :-) I cannot imagine someone that won't return your phone call immediately. What the heck? Can your general practioner help in the meantime? Is the rib something that s/he would be willing to look at or maybe call the oncologist about to help get things moving? Hang in there. My thoughts are with you.
    -Marieke

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  3. I'm sorry to hear about yet another frustrating and fearful expereince for you. Pediatric cancer is a difficult rollercoaster ride. Let the strength through prayer and the support of loved ones help you. However, I would really suggest a July scan... if you and Matt are seeing something "that doesn't seem quite right"... don't wait.You know Brady better than anyone... it sounds like he is a little "out of sorts" at times and he has every right to be, but I'm reading that this is "not like him" through your journal. It is unfortunate you have to basically direct his care, but look what an awesome job you have done thus far. I will be praying for you. (don't think I'm trying to tell you what to do... just some advice.)
    Love,
    Laurie

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  4. Megan,
    Ditto on Marieke's message.
    My feeling is that there could likely be a distortion of his internal organs from removing the large mass in his chest.
    Strange things can happen after surgery, I know!
    Good luck to you.
    Marge

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  5. I agree with Laurie and Marieke...keep after them!
    Prayers, as always.
    A.

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