The Supposed Beginning

Like most families we would get sick once in a while for a day or so, but then it happened. First, Thomas seemed to have caught something then me about a week later and then Emily seemed to be fighting something also. At first I did not worry too much, but when it hit a week of breaking high fevers for a week off and on (I remember always being told to wait a few days before taking to doctors....) finally got an appointment with her doctor and was told to see if it goes a way it may last a couple weeks. During this time Amber was very worried especially being on the other side of the world and no chance of getting home soon. Over the course of the next week she was looking worse and worse and was starting to show signs of a rash more and more....got another appointment by taking the appointment I had scheduled for myself and demanding that they gave it to Emily because I was doing better and she needed it more (This was also the day most of the medical systems went out) and tests were run on her. We were sent to the hospital for the tests that she needed with her blood. We had got home around 5 pm from running and doing that, we started at around noon I think. I was getting ready to make dinner for the kids and then I got a call, "You need to get your daughter to the ER immediately". So we were off again back to the hospital and was there until 3 or 4 in the morning I think. They did more tests on her...said they could admit her if I wanted....but I didn't see a reason since she was only showing the fever and they didn't know what was causing it and I had another appointment the next day with the doctor for her. So we had one day home between doctor visits.

We went to that appointment and I was already a little tired by all the up time but was doing very good. I was also in constant contact, in some form, with Amber. I appreciate her command understanding during this time and all the help they were. I checked my phone prior to leaving for the doctor and noticed I had a message from around midnight on it..Checked it and was told to return to the ER immediately or if I did not receive the message before the doctor to arrive for the appointment. So, I went to the appointment and they saw us pretty quick. Was told all the test were negative but her white blood count was high...and was higher on the retest. The doctor arranged for us to bypass ER and be admitted directly into the Children's Pediatric Wing of the Hospital. Left immediately from the doctors office and beelined it to the Hospital yet again....but I did stop by the house and picked up a couple things....I was starting to have bad feelings about being admitted (meant something was wrong and they didn't know exactly what). Arrived with two children in tow and she was immediately put into a room and the process of more tests, retests, x-rays, PET Scan, eye exam, and a dermatology exam commenced over the next several days.

The staff at the hospital were great and the atmosphere was wonderful. Thomas found out he could get the staff to playing with him while I was helping Ems. Which was a great help. All the test kept coming back negative, so it was decided we should go see a specialist at another hospital. So I packed the kids up for a couple hours and headed to that appointment....appointment was a bust at first. Hospitals sometimes don't play nice especially if you are still admitted at another one. But the doctors did talk in the background and were able to decide what test still would need to be run but were told it probably was not what it was thought to have been because Ems wasn't showing the main symptom. Returned to the hospital and they added some medications that brought her fever under some control....enough for the moment, but her blood work was way out of whack. Schedules were made for Bone Biopsy, CT Scan, Spinal Tap. At this time I was becoming more worried and I know Amber was worried as could be. I asked the doctors about getting my wife back due to the high risk with all the things they wanted to do....and papers were filled out and an Red Cross letter was sent immediately to her ship. Amber called to see how Ems was doing, and I told her about the procedures and that I had a red cross letter sent a little before her call. Next thing I knew they had booted her off the boat as fast as possible to get her home in time for the procedures...her plane would arrive an hour before they were to begin (her work made arrangements to have her picked up and immediately taken to the hospital).

This is all happening for a "Fever of unknown origin" and the likely hood of her dieing was edging ever closer and closer (hence the red cross letter). The day of the procedures they thought it had to be something for certain and the test may not have been needed and her fever was finally being controlled but she was not getting any better.Amber arrived and by Sunday we were sent home due to nothing being able to be done for her at that time. She started getting worse at home so calls were made to get an emergency appointment with the specialist....not much improvement...she did look worse but wasn't showing a classic sign of Juvenile Arthritis which is joint pain and swelling. So, we immediately returned to the Hospital and the procedures were done later that afternoon. That night she had to have a blood infusion (she is 5) and the next day test were negative for cancer and were to be transferred later that day to the local Children's Hospital were the specialist was. That night we met one of the other specialist on the team and were told what she had, Systemic Onset Juvenile Idiopathic Arthritis (SoJIA or Stills Disease) a much rarer form and hard to diagnose as fast as she was. This means that the arthritis does not usually show at the beginning like I believe all other forms do (making the evasive tests required).

So, you say great you know what it is and you would think there was a set way to treat or cure it. Well, you would be wrong. There is not. It's hit or miss and every child is different and reacts different to different medications. Oh, and since it is the more rare form she will most likely be on some kind of medicine the rest of her life (lucky if just one med) just for this disease. Oh and she also is more sever than most cases that have gotten it and to top that off she developed Macrophage Activation Syndrome (MAS) which increases the likely hood of dieing even more if not controlled in the early stages. Great things to find out....did I mention we spent 5 weeks in total getting her under control and on oral medications to be able to release her from the hospital....besides the week and a half to two weeks at the other hospital. By the way they consider MAS to be rare to get but Ems had it twice over our hospital stays.

New Diagnosis....New Reality

I am new to this posting all the time. I decided to make a new blog for family and friends that would be easy for them to access and would be about my daughters newly diagnosed disease and not much anything else.

My wife has one but mine will be from my perspective since I usually don't say that much publicly. So, we will see how this goes and if I do any good at it.

My daughter Emily has recently been diagnosed with Systemic Onset Juvenile Idiopathic Arthritis (SoJIA or Stills Disease) before this she was a happy girl who played all the time and enjoyed life...and had an easy time doing anything she could think of. That is not true anymore...now she must fight to try to do anything she used to be able to do and not anywhere close to the lever she used to do those things.