When I look at this photo it makes me cry because I see how much she has changed. She now has difficulty walking, hearing, speaking, and seeing. (When she speaks her speech is very, very difficult to understand...)I just want to put my arms around her to keep her safe...
For more information on the disorders that have impacted our Melody and so many other little ones - Langerhans Cell Histiocytosis, diabetes insipidus, and neurodgeneration please follow these links:
http://histio.org/lchinchildren
http://histio.org/page.aspx?pid=407
http://www.cancer.gov/cancertopics/pdq/treatment/lchistio/Patient#Keypoint10
Two years has passed and today we prepare for the worst.
Angel and Art are trying to get prepared to go through the next round of chemotherapy the end of this month. As parents of a child with Langerhans Cell Histiocytosis X they have watched the disease progression with an increasing sense of powerlessness. I hear the worry in their voices when we speak each day. Melody has changed so much since her initial diagnosis. She is no longer the ray of sunshine that lit up our lives... she is very sick.
She has to endure another year of chemotherapy. There are two lesions in her brainstem that did not respond to the first chemo treatments. She is quite ill right now with fevers, nausea, and vomiting. The chemo is taking a toll on the whole family with each and every treatment. We all worry about her and seeing her like this is difficult.
Melody has a walker that she uses at school these days. Her gait is very unsteady; she stumbles and falls quite easily. She needs help to get around. Her classmates are very supportive. They are always careful not to bump into her.
Melody has a special tablet that speaks for her; her voice and speech have become very difficult to understand. She has neuronal degeneration some of which came from the chemotherapy.
Melody does not understand what is happening to her...she asks her mother why her legs are so wobbly. She gets frustrated when people don't understand her when she speaks. Angel tries to gently explain the illness but in a way I am glad she does not (understand) how awful it can be. It is something I struggle with daily...I wish there was something I could do to help.
Throughout all of this we have been glad for each and every day that Melody has been able to be happy. I joke that as long as she is running around and yelling at her brothers she is good! That has been my yardstick to personally gauge how she is doing. These days she does not walk well and she does not run through the house. I must admit that I am concerned that this is much worse than we ever knew it could be.
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They have been treading water for the past two years. The house is in need of repairs that have been put on hold while they are taking care of the children, finding their way with Melody's health issues, and waiting for things to get better. It is a very difficult time for the family. I realize that there is not one thing that I can do...just pray.,
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