Thursday, September 24, 2009

A Story From the Past Part III: About Ari's Disease

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By Travis Lane

I continued my email to my friends. This is what I wrote:

The following is a journal entry that I thought you might find enjoyable. I actually revised the journal entry to a story for you guys. So it’s not the exact journal entry.

My youngest daughter Arianna, is 22 months old. She has a disease called Langerhans Cell Histiocytosis (LCH). It is a fatal disease and a chronic illness. It acts like a cancer and in some ways is much more deadly than cancer. The negative side on this disease is that it will spread much faster than cancer and it will attack more aggressively than cancer. There are two types of this disease. A single symptom and a multi-symptom. The single will develop in one part of the body and the multi will develop in multiple areas.

Unfortunately, she has the multi-symptom and it has developed in her brain, lungs. kidneys, liver, spleen and bones. It is a blood disease making it possible to be carried throughout her entire body. Sadly, each section of her body that this disease has contaminated has caused other problems for her as well. For example, the disease in her brain has completely damaged her pituitary gland. This has caused all kinds of short term related problems but the long-term damage is that she will have "Diabetes Insipidus." Her lungs have a terrible infection in them, not allowing her to breathe on her own at times and accumulating a large amount of fluids also causing her lungs to swell about twice their normal size. Her kidneys have an infection as well as they are swelled to three times their normal size. Her liver and spleen are also infected to the point that they are not functioning and they also are three times their normal size. The disease in her bones is the most painful. They explain the pain like getting a cavity in your tooth drilled on without receiving Novacaine.

We have been at Primary Children Hospital for the last three, almost four weeks. During our stay here, the doctors wanted Haley and I to receive counseling to prepare for Arianna’s death. Arianna had developed to a point that appeared that she would not be able to recover. PCH informed us that out of all of the cases they have treated that Arianna’s was the most severe and was similar to a late stage 3 of cancer. Needless to say, we had our other three children come up to say their goodbyes to their little sister.

The following week was a challenge physically, spiritually and emotionally. There were many times I thought I was watching her take her last breath or witness her last heartbeat as I would watch the doctors and nurses hook her into the life support breathing machine. I would watch the monitor that displayed her heart beat per minute count down from 120 bpm to 110 to 90 to 70 to 50 to 20 bpm. Her Breathing would go from 90 to 50 to 40 to 10. They would then aggressively run a tube from her nose into her lungs to vacuum out the fluids on her lungs trying to allow her lungs to take in oxygen. Sadly, that event has taken place many times.

She also has a viral in her body and because of the chemotherapy her immune system has no ability to fight the infection or the viral in her body. The viral and infection have become more life threatening than the LCH. The doctors have all questioned, why she has continued to live. She fights just enough to stay alive, she just will not give up. I’ve heard of miracles but the fight she puts forth is beyond belief. You have to see it to believe it kind of thing. The doctors shake their heads wondering "How does she continue to make it." I have never been so inspired in my life, as to witness this daily fight for life when all odds are against her. I wonder every day "How can a little tiny human fight with such determination and belief of success?" The answer came to me a couple of days ago, of what appeared to be her last breath. It’s not the human in her fighting it’s the Godly spirit inside of her that knows and understands something the human does not.

(You have just received the very quick watered down version of Arianna’s life these last three weeks.) Liz started a blog for her to help keep people updated on her condition. Sometimes its updated and sometimes it is not.

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