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