So today was a rough day just as expected.....Today Ella's vision was tested because of the reports from her teachers that she was not able to see the board and all of the other symptoms she has been having lately. (Blurry vision, walking into walls, passing out, dizziness, numbness in limbs, headaches and more) Well the doc found that she is now basically blind in her left eye and this is VERY new and he can't say what could be causing this since her MRI showed positive changes with the tumors. That was a difficult test to watch. They want to test her again tomorrow just to be sure the test was accurate. Then we talked to her Doc and requested to change Doctors and that was an emotional roller coaster. Finally after she began her second chemo drug she began having an allergic reaction that caused trouble breathing, coughing, hives and as she shared afterwards... "it felt like my throat was closing". They immediately stopped the drip and gave her IV benadryl. She started to recover quickly. We just now got home....We hoped for a better result when they went back on Friday, unfortunately it was confirmed her vision in her left eye is gone. Here are Terri's words from Friday:
I showed Ella all of your posts after we came home from a very upsetting Doctors appointment confirming the fact that she has lost vision in her left eye and she was so happy to see all of your birthday wishes. She was so touched and said "I can't believe all those people are thinking of me! I hope they all have happy birthdays too!" Then she was smiling and giggling at some of the posts/photos. Thank you to everyone who has sent her messages, cards, encouragement, well wishes, pics, etc. You are keeping her spirits up and that is so important. Thank you also to all of you who donated today through texting. We greatly appreciate it!! Together we will get money into the skilled hands that can find a cure for this baffling disorder!! your kindness means so much to our family!
You might be thinking, "THIS SUCKS!" We agree, wholeheartedly. Some of you might be thinking, "bad things keep happening for Ella, there's no answers, what's the point?" That is when we have to say, in the words of F.U.N. "If you're lost and alone, and you're sinking like a stone, carry on! May your past be the sound of your feet upon the ground..carry on carry on!" The news of this setback has to propel us forward, we have to move into hyper speed in our mission to raise awareness of Neurofibromatosis!! Neurofibromatosis, Inc. Northeast recently reported that $15 million was appropriated to the Army's NF Research Program by Congress in spite of many cuts--how? By ordinary people like you and me calling, emailing, and sending letters to protest defunding the research for fiscal year 2013.
We won't give up, HopeforElla will fight on and carry the topic of Neurofibromatosis to every person we possibly can. Keep spreading the word, keep reading, keep learning all you can about NF. Share your links, your words, your experiences with us. Together we will change the future and make sure Ella, and all people with NF, know they are NEVER alone.
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