New Diagnosis for My Daughter

This photo was taken the day of the new diagnosis a week ago.

Dear Readers,
I wanted to give you the latest on my sweet daughter.  A week ago Wednesday the doctor did a MRI that came back with an alarming number of new lesions on her brain.  Immediately, the doctor called in a MS specialist and an Infectious Disease Specialist.  On Thursday, the Infectious Disease Specialist was talking to us about a fungus called cryptococcus neoformans that had shown up in blood samples he had taken.  He stopped all MS treatments (including the plasm exchange the MS Specialist had ordered) and began treating this fungus.  Because of Lizzie’s rare manifestation of this fungus, he called the nation’s leading specialist in cryptococcus neoformans to confirm we were treating it in the best possible method.  We are.

I wish I could report that this new course of action has restored her (it has been a week of the new med).   We have actually watched her continue to decline and it is very scary.  The medicines that treat this fungus is extremely toxic on the body and miserable to endure.   Today I saw a small glimpse of improvement.  As her mother, I grabbed on to that little morsel of improvement and held it tight to my chest.  Yes!  Tiny, tiny improvements are like huge lottery tickets.

What I have noticed in my own being is that life has a new leveling.  There is little that has significance when held against the well being of your own child.  Things that bothered me in the past no longer have power.  Those small petty annoyances disappear in the face of a loved one’s health and well being.  My husband said to me that nothing at work stressed him out anymore.  He has found a new view of what matters.

Tonight my youngest daughter, my husband and I all spent the evening rubbing and holding my Lizzie.  We prayed over her, caressed her face and cheered her on to battle the fungus.  She seemed to fall into a deep, deep sleep with such peace on her face.  She hasn’t be able to eat or sleep very well lately.

Please keep her in your heart and prayers.  I have realized in this crisis that God’s grace and mercy are often delivered through the hearts and hands of the people around us.  We are the instruments of God – it is so true.

I have continued to post on my blog – it is so dear to me.  I told Lizzie that when she walks again I will take her to Paris, France.  She has been 10 times.  Travel is one of her passions.  This promise has prodded me to get a few of my e-course ready for unveiling.   I will post information about my first e-course on June 2, Lizzie’s birthday.  It is a four week course and very special.  The proceeds will be my toast for her future – to walk again in Paris, France.

I am so grateful for all the love and support.

Sally

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Comments

  1. About a Girl says:

    You are a true inspiration as a mother, blogger, teacher and woman. My heart physically aches for you and I can’t imagine your pain and terrible worry. Please know that your family is in my heart and thoughts. I will be watching out for the day that you are able to post the picture of you and your daughter together in Paris.

  2. deena says:

    Your family is in our thoughts and prayers.

  3. Mrs. Plum says:

    Lizzie’s light and beauty shine through in her picture. I pray that she continues to improve and that her treatment will be effective. May she one day walk again in Paris! (I share her love of that amazing city, though I have only been twice.) I will be sending special prayers her way on her birthday. May she find joy on it and every day.

  4. Cheryl44 says:

    I will continue to keep your daughter in my heart and prayers. Your family is such an inspiration! Hoping for you to see improvements today!

  5. Karen says:

    Sally, your family is in our thoughts and prayers. You are a wonderful parent, and are surely helping your daughter heal with all the love, joy, and peace you have in your heart.
    xoxoxo

  6. Thank you so much for your kind words my friends. It is such a comfort to myself and my family.

  7. We continue to keep your family in our prayers.

  8. Sally,

    Your precious daughter will continue to be in my prayers, as are you and your family. My birthday wish for her is that she may enjoy a renewal of health and may you both soon look out at the world from the top of the Eiffel Tower. ~ Alida

  9. Kathy says:

    Best wishes! It is amazing how perception changes with trial. Keep the faith. Kathy (kindergartenkiosk.blogspot.com)

  10. Chrissy says:

    Thank you for updating us on your daughter’s health. Wow, what amazing progress this week; knowing the name of “the mountain” is crucial, IMO, to praying that it be removed! I hold you all in my heart and will continue to pray for recovery and restoration. {{}}

    ReadWriteSing

  11. shawntanet says:

    Bless your sweet angel. I am praying for you as a mother, your family and for your blessed daughter. Love truly is all that matters. I wish I could go to Paris too! 🙂

  12. Chris says:

    I will be praying for your family. Please check the website knowthecause.com , Doug Kaufmann has written quite a few book on fungus, diet and illnesses. I have lupus and I control it with his eating plan and herbs.

  13. Cindy says:

    Your family is in my thoughts and prayers!

  14. Thank you everyone so much for your amazing love and care. It means everything to me. It is a roller coaster ride and I am squeezing your hands!!!

    @ Chris – I did check out the Doug Kaufman site – thank you so much. When Lizzie gets home I will be taking up this new view of eating.

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