Thursday, March 12, 2009

Taking a Deep Breath

Another day, another series of frustrating phone calls. I'm talking to several nice, well-meaning people every day. However, progress is slow and I can't believe that in the year 2009 when a child has cancer, that it can be this difficult to get an appointment and to get your insurance to cover it. Here is the news from today:
1. Sloan received the fax (2 times actually) of all Brady's records.
2. The CT scans and MRIs are in the mail on their way to Sloan.
3. The pathology dept is preparing slides to be sent to Sloan.
4. Our insurance company has only approved a "2nd opinion consult" at Sloan. This is enough to get us an appointment, but that is it. This is an obstacle, but I have our case manager (who is wonderful)working on it.

Sloan will not pass Brady's info on to the medical team until they have the pathology slides in their hands. Hopefully, they will be in the mail tomorrow. The office staff at Sloan loves hearing from me everyday I'm sure, I think that is why they finally caved and told me that March 24th might be a possbility for an appt if everything is in order.

Brady is down to needing bloodwork only on Thursdays. He continues to be brave and adorable throughout the whole process. I'm calling Strong tomorrow to inquire about the catecholamine results that we still don't have.

Please be praying:
1. For Cara and her appointment with the eye specialist tomorrow. We are praying that whatever is wrong will be easily fixable. Pray that she will tolerate the exam well and I will be able to clearly articulate what is going on.

2. For me, as I'm really struggling with anxiety and worry right now. The details of how to keep our family going while existing in two different places is overwhelming. There are so many small details to think about as far as being in NYC, living in a hospital, traveling back and forth, arranging help at home...My heart is heavy as I know what is coming for Brady. It was excruciating to watch him endure the last surgery/recovery, my "mommy heart" is breaking at the thought of it.

3. For our parents who continue to bear a lot of the "burden" of helping us with the kids. Keep in mind that we still are attempting to raise 4 kids under 2, that alone is an exhausting job. We are in the midst of the "terrible 2s" and trust me, the grandparents put up with a lot! We praise God for them, but need you to pray for them as well.

God is truly revealing himself to us through the tremendous blessing we have everyday in our friends and family. It is impossible to deny the awesome power of God when we look at all He has done for us!


  1. You are being given the strength every day. It comes through in your blog every night! And that's only the part we see...
    The prayers continue and continue and will continue some more!

  2. Have a question about all the slides and films being sent in the mail? How is this done? Priority? Do they have a specific, special delivery for these medical cases? Just wondering what protection the patients have if they are lost and are the originals? With the outlook you have and the boldness to get what you want you will be okay. You're gonna make it through this and your other children's issues too, this will all come to pass, and you will look back and wonder(even though you will know)how in the world did we survive. You are a crucible being put through the fire that will come out refined and new! Hold on, our prayers and God's love will sustain you, His mercies are new every morning!!! love to you all...

  3. Hey Meg,

    I'm glad the records finally made it through! That's at least one little bit of relief. Good job being persistent. That is really hard, but you are doing an excellent job. Things are still moving forward, even though it feels incredibly slow when you're on the waiting end. Your diligence has been so vital--don't give up!! I will definitely pray for you, Cara, Brady, and the grandparents. Keep your head up, Girl, and keep watching for miracles in action. :o)


  4. I am so glad everything made it through! I know that when your child is suffering you feel like everything is going in slow motion, but remember that God is in control so things will get done. We will continue to pray for you and your family and the strength that will be needed in the upcoming days. You continue to be a blessing to others through your blogs, and I know that the blessings will return in multitude for the Williams family. Yvonne

  5. Glad to hear that you have been able to get some traction with getting the medical records to Sloan. Sounds like you have such a wonderful team of people working with you.

    I know that you are a planner and it is driving your crazy with worry and anexity.

    When I was going through a similar situation in the past, I went to my primary care doctor and they put me on a mild dose of anexity medication. It really helped lessen the anexity which then helped me feel like I was able to spend more time with the kids and get more stuff done. I was less worried with what was going to happen and how I was going to deal with it.

  6. Good for you for advoacting so strongly for your child. He needs you more than ever right now and you're right there next to him. My suggestion (I'm sure you're sick of suggestions but...) bring a picture of Brady for everyone you meet. Write a nice thank you note on the back and his blog address. MAKE THEM FALL IN LOVE WITH BRADY (how can you not?). Make it personal for them. Make them feel like Brady is their little boy too. It might or might not make a difference. But we tend to favor the ones we love right? I know I check in on Brady everyday. And I will continue to pray for him and your family. Keep up the good work and always remember that you have a whole community of people standing beside you!!!!


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