Ash has been diagnosed with a disease called pediatric sarcoidosis. It is extremely rare,(especially in children) and very scary. We are grateful to have an answer, and a plan of attack/treatment...but of course this is not something that we want her to have...kind of like the lesser of two evils. More bitter sweet for us, and she is struggling to come to grips with this. We have a long road ahead. There is no cure, only treatment to manage the symptoms, and there are some potentially serious, and sometimes fatal complications. Ash is taking oral steroids to quiet the inflammation, and is getting an injection of an immune suppressing medication once a week. She will be on this medication at least a year. I was taught how to give her injections so at least she doesn't have to go to the doctor to get it. She will be closely monitored, have blood drawn once a month to keep an eye on what the meds are doing, and we will be watching for any indication of any type of illness or new symptom. She will have to be taken to the doctor asap with any concerns because of her disease, and because of the immune suppressing meds. (The meds have some nasty side effects of their own, but the benefits very significantly outweigh the risks). The goal is to find the space where she feels better, so that we can have our lives back...albeit a different form of our lives, but at least be able to adjust and learn how to live with it. We're fighters, survivors, and positive thinkers, even when we get knocked off our feet from time to time. We don't stay down for long! We will be continuing a combination of modern medicine and holistic therapy for her treatment. She is very open, and very responsive to holistic care.
This has been life changing. Because of the rarity of the disease, there aren't enough studies to know what exactly is, or isn't going to happen...where the disease will, or hopefully will not, attack next, so it will be an adjustment for us to know that we are just "waiting and seeing", and we are praying the doctors find the "sweet spot" in her treatment quickly. We are choosing to think positive, and believe that she will be one of the cases that goes into remission.
We have made the decision to move back to California where we have family and many many wonderful friends for support. We are both going to need it. That being said...your help is needed and so very much appreciated now more than ever.
Please help us get home, and please continue to support us in our on-going need for assistance with the cost of her medical, the cost of providing a comfortable home for her...the needs of daily living. They say this isn't ending...isn't going away...and yet, we are feeling so blessed for the opportunities that this adventure has brought. She has already taught the medical community so much, and it is our hope that our experience helps more families in the future.
Blessings, in love & light!
Dana & Ashley
Previously...the start of our journey:::
Ashley is a very sick little girl. I'm Dana, and I'm her Mom. If you have a few minutes, I'd like to tell you her story.
She started not feeling well just before Thanksgiving. She has been sick for over 5 months now. She suffers from fevers, painful headaches, and exhaustion. She has inflammation running around her little body causing problems with various organs...most recently threatening her vision. She has had two hospital stays, multiple tests, including bone marrow, and more blood draws than anyone should have to go through, let alone an 8 year old little girl.
Even after all this, we still don't know exactly what the cause of her illness is. We know it's serious, or rare. We have bits and pieces:clues, but not the whole picture. Certainly not for lack of trying. She has an impressive team of specialists working on her, but she has had doctor after doctor tell her what a puzzle she is. They say "unusual case", or "you are a mystery". Well, she doesn't want to be. She tells me through her scared and frustrated tears time and time again, "I just want to be a normal little girl, and go to school, and play:I miss my friends. I can"˜t do this anymore! I"˜m tired Mom". Heartbreaking, because I can't fix it, or kiss it & make it all better. She should be out climbing trees, chasing butterflies, and playing with her friends. At least she can still paint:she loves to paint. She says it makes her feel better.
As a single Mom, I am her only advocate. Her father is not in the picture. Most of the last 6 months, she has been too ill to get off of the couch, let alone go to school, which means I have missed work.
The people who know me best will tell you that I am not the kind of person to accept help, let alone ask for it, but quite frankly, I'm drowning. The hardest part is there is no end in sight. There will be more doctors, more medicines, more tests, more specialists, more hospital stays:and now traveling in and out of state for specialized clinic visits...all without me being able to make money.
Ash is very perceptive, has heard my worries, and wants to auction off her paintings to help pay for her ongoing medical costs. After all she has been through:she wants to help me. I'm so grateful for her sweet generous heart, and I hope every single day will be the day she wakes up, and smiles, and has her spark back:the day we don't have to worry, that she doesn't have to fight for the strength to make it through a whole day without being exhausted:but for now, we keep moving forward with hope, and try to stay focused on the blessings.
Thanks for listening, and as Ash says "You are beautiful! Don't let anyone take your spirit!"
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