Friday, September 28, 2012

New tumor: updates

We are overwhelmed with the amount of emails, messages and phone calls we have received expressing your shared grief over the new tumor news. I cannot thank you enough for that support for my family. Please forgive us if we have not returned your call or message individually, as there are too many to count at this time and we must stay focused on our kids, decision-making, coming to terms with the news, etc. We will certainly try, though I really hope everyone can use the blog as the source of info for a while at least. We appreciate your understanding, and most of all, your prayers.

Thursday was one of the worst days of our lives. The best way that I can describe how I felt is that it was as if my heart had literally been ripped from my chest and I was bleeding to death. I felt lightheaded, cold. As though I was outside of my body it hurts so bad.
Today is a new day, and I for one awoke with a new understanding: we are beaten, but alive. Yes, it hurts, but we can heal. God has granted me the serenity to accept what we cannot change, and the courage to change the things we can. We can keep fighting. We can love and support Madeleine and make and do the best we can for her.

-  This morning's ultrasound was quick, and subsequently we learned NORMAL.
-  This morning's spinal tap was quick even though we waited for hours. There are two results from the LP, the cell count and the cytology. The cell count is performed in the lab and indicates whether or not they can physically count the cells in the fluid. If there are no abnormal cells counted, it would be very unusual for the cytology to come back with any bad indications, though still possible. We received a phone call late in the afternoon that her cell count was ZERO- it's very likely the disease has not metastasized, ie. spread through the fluid. We'll know for sure next week.
-  We received a copy of the radiologist's report from the MRI; there is an indication of something on the bone itself in her spine. I should preface by saying that it is consistent with chemo patients to have lost significant calcium of the bones, including the spine and it is consistent with what her images indicate. However, it may also be a lesion or new growth. As a result, Madeleine will have a bone scan next week as well to determine what is showing on the MRI.
-  Madeleine's surgery, her third craniotomy and now 6th surgery, is scheduled for Friday, October 5th. Just three days after her 1st birthday. Dr. Lazareff, her amazing surgeon, called us while reviewing the scans. He said in comparison to everything she has already been through, this resection should be the easiest for her, the easiest for him. It does not appear that the tumor is attached to any surrounding tissues and he should be able to go in a scoop it out relatively easily. Please remember him and his steady hands in your prayers for Madeleine.

Given everything that has transpired, and the unknowns to come, we made an important decision this afternoon. In a private, informal ceremony after mass, Jonathan and Janine baptized Madeleine with the Church's special exception for us at Saint Augustine's. We all know she is a child of God, and this was ever so important for us. I'm hopeful that sometime soon we'll be able to have a lovely celebration of her baptism surrounded by everyone who loves her, just as she deserves. Just as I wish I wish I wish!! to give her a lovely birthday celebration. Nothing would make her Daddy happier than to give her everything. A unicorn if she wants it. She has earned it, this little love of ours...
More to come next week. Thank you for reading, thank you for praying, thank you for thinking of us.

2 comments:

  1. I'm getting her a unicorn tonight in her sweet dreams - Love you V.

    ReplyDelete
  2. From the bottom of my heart I hope your precious little girl beats this bastard of a disease.
    If you've not heard of the drug mln8237 ask your oncologist about it. In clinical trials it appears to stop the signaling of the atrt cells which stops them proliferating and also makes them more prone to radiation and chemo treatments.
    Have a look at:
    http://clinicaltrials.gov/ct2/show/NCT01154816

    Though you may be able to gain access to the drug on compassionate grounds:

    http://www.connorscure.com/BLOG
    http://www.caringbridge.org/visit/connor_rohde

    Also see grant shelhorn.
    http://www.carepages.com/carepages/GrantSchellhorn

    Good luck baby girl.

    ReplyDelete