In April 2013 Alyssa had gotten a horrible stomach virus and was sick for over a week to the point where she could no longer swallow food or water. So we got admitted for the first time. She was fed supplements through IV. Everyday it was a different test. This is when we discovered that her liver, spleen, lymph nodes were enlarged. So after 12 days we were discharged with orders to go to Children's Healthcare in Atlanta. She was tested for every infectious disease imaginable and everything was negative. So we came back to Columbus to be told by her Pediatrician that they did not and could not treat her anymore. So I hand delivered her records to a hematologist/oncologist in town. And that is where the roller coaster of our lives began.
Since then we have had so many hospital stays and doctors' visits I can't even count them anymore. I mean I am sure I could find the stack of bills and it would give me a partial idea. The main concern from the beginning was her spleen. It measures more than twice the size it is supposed to. We had to figure out what was causing that. If a spleen is enlarged for more that two weeks you are supposed to seek immediate medical attention. At this point it had been almost a year. The first tests were sent and the results were Greek to me. All we knew was that at that point she had 4 of the medical criteria to diagnose her with ALPS. But more tests were needed. We had to know what type she had. There are multiple types. At this point she has been ruled out for having two of the genetic mutations. But we still don't know about the rest. Its been over a year and a half and even though we know its ALPS there are still so many questions and just no answers.
She struggles with things that normal children find no problem with. Our week starts on Monday and by Wednesday she has spiked a fever and is so exhausted she can barely function. Thursday she wakes up and it starts again and then by Sunday she is completely out of steam. She has bumps that she gets on her face and warts. She has been picked on a lot about those. Its tough for her. But she is so strong.
Alyssa told me in the car one day that she was glad that God chose her to be sick. For the life of me I could not understand why she would say that so I asked her why. She told me that she has a mommy that can take care of her and a lot of kids don't, so its better that she is sick and not them. She can tell you that this does not make her who she is. Her love of people, her love of her family, and her love of her Auburn Tigers do though. She is supposed to start a new drug therapy that will hopefully allow her body to no longer attack herself and should hit the reset button on her immune system. Some of the kids that have taken this medicine have been on it for years. Things are about to get very difficult. But if you ask Alyssa, she is just going to tell you that she can handle it because she has too.
She doesn't want people to feel sorry for her though. Here is what she wants....Awareness and help finding a cure. We may have to travel to the NIH just to get a better understanding. She is at a 99% chance of developing lymphoma before the age of 17. This medicine costs almost $4000 a month. Insurance is there to cover some. So if you read this please go look up ALPS. Learn about it. Share her story. Just help us give a silent disease a voice. Her website is www.PrayersForAlyssa.org. There is a tab on ways to help, through fundraisers, go fund me, and paypal donations. There is also a contact form you can send messages to Alyssa and follow on facebook and twitter. And spread the word. If you ever met her she is an inspiration. And just like she told me to share with our Auburn boys tonight, we have a motto. We won't win them all....but we still win if we live to fight another battle.
From a scared mom just trying to make some noise
Jessica
Proudly known as Alyssa's Mom
Prayers For Alyssa
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