Monday, February 23, 2009

Plan for Round 2

What a day! Today was a blur of activity...just trying to tie up some loose ends before we head back to Strong tomorrow. We are in the process of switching pediatricians, so I needed to write a few letters to get that process going. Brady's nurse came to change his dressing, flush the Broviac, and draw blood. That meant I needed to give him a bath ahead of time. I called Strong later in the day to get blood results and find out the plan for tomorrow. His blood levels look good to go ahead with chemo tomorrow. They will call us in the morning to tell us what time to come in. The plan is to give him 3 different drugs all tomorrow night, hopefully while he sleeps. They hang the drugs on a pole and they go directly into his system via the Broviac. I begged our NP to try and get us a private room. I can't tell you how much privacy means when dealing with something like this. She said she is going to see what she can do. I also asked when we will be able to repeat all of the scans to see how the tumor has changed due to chemotherapy. The NP is going to check with our oncologist, but she said it could be anywhere from 2-6 weeks post chemo. I can't imagine waiting a month or more, that will be agony. In the meantime I called Sloan Kettering myself. I want to know if they think it would be advantageous for us to go to them for the scans. I have heard that they have more fine-tuned scans and that their radiologists who read them are top-notch. I also wanted to know if they recommend a different timeline between chemo and scans. I'm expecting a call back tomorrow. Our plan is still to go there for any post-chemo surgery.

So it was a busy day. Thank goodness I had so much help during the day. Sometimes our house is a revolving door of people...but I wouldn't trade anyone for anything!! Thank you mom, Pam, Sandy, and Ron for your help today. I will update at least once tomorrow once we are settled at Strong.

One more thing...if you haven't already, check out Laura, our photographers blog, at momentsphotographybylaura@blogspot.com. She wrote some very sweet words about our family and also put up a darling picture of Brady and I. I treasure that picture already. It captures what I love most about Brady...those blue eyes and chubby hands. He is also clutching a goldfish in his hand, that is SO Brady to hang onto something like a treasure. What a treasure he is...

6 comments:

  1. Good luck tomorrow, Meg! I'll be praying for all of you and Brady especially!!
    -Rosalie

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  2. matt and meg-
    okay,our family and youth group is fired up for the next round of intensive prayer(not that we stopped)but our youth is joining me in fasting their favorite junk food etc... they've even added things to their myspaces about him. You are loved sweet brady, He will not abandon you. love you guys and keep the faith, you're almost to the other side!!!

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  3. Hi there. I found your site through Seans. I'm sorry you are going through this. My son Jak is 5 and also has Stage 3 intermediate risk neuroblastoma, diagnosed at age 3. Jak is doing well and will celebrate 1 year NED on Wednesday. Jak had surgery at MSKCC in Feb 2008 and they are wonderful. Jak's site is www.caringbridge.org/visit/jakmortensen. Please let me know if you need anything. My email is on Jak's site. Good luck. We'll be thinking of you. Laura Mortensen

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  4. I LOVE the photo's! That was a great idea, I don't have any from when the kids were that little. I hope you hear from Sloan soon and have a plan you are comfortable with. Let me know if you need email's etc. Tonight I'm praying for that private room!! God Bless, Love, Ellen, Scott A., and your triplet friends, Kathleen, Sean and Heather

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  5. Best of luck to all of you during this second round of chemo. I will be thinking and praying for you.
    The pictures on Laura's blog were beautiful. The one of you and Brady is so sweet! I know you will always cherish that.

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  6. I am so happy God has sent so many wonderful people to help you get through this time.

    I will keep praying that you , Brady and your family get through this second round smoothly.

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