Where to Begin?

Well - where to start. I guess the beginning. Read on and see what has been going on in our lives the last few weeks.
Thursday, Jan 28th - I took Kady to the doctor. Her arm was large again and she was coughing like a maniac. The doctor found Kady had some fluid on her ear, so she ordered an anti-biotic and also showed concern over the size of the "bump" in Kady's arm again. I was elated that she was also concerned and wanted to find out what this "thing" is in her arm. I got bold, finally, and asked if we could do a biopsy or something more to find out what this is, that keeps re-appearing in Kady's arm. I told her since we already established it was not cancer, I really did NOT want to go back to oncologists. The care there was wonderful, the people were nice, but we really had a difficult time understanding the doctor we were seeing and also had a difficult time with him understanding where we were coming from. She explained to me that since we still do not know what this is - we really need to go to someone that KNOWS how to remove or biopsy an area of "unknown". She explained that if we "disturbed" something that should not have been "disturbed" we could cause more damage than good. I understood what she meant and left happy. I knew my doctor was on my side and was also determined to "discover" what this lump was on my daughter's arm.
Our pediatrician called on Tuesday, Feb 2nd and let me know she had spoken with the head of oncology at Children's Hospital. He also showed concern that the lump seems to not have disappeared and felt that the MRI we had done in October may have not been conclusive enough. So - he ordered an ultrasound where we could see the blood vessels, nerves, muscles, etc. that may be involved.
That Thursday morning - Kady and I headed off to get the ultrasound done. I sat and watched as this man slowly dragged this jelly lined object over Kady's forearm. As I watched, I tried to discern what I was looking at. I could definitely see the "mass" that was in her arm. It was undeniable there was "something" there. I waited until he was finished until I asked him to show me what I was seeing. He pointed out the objects on the screen and then told me that the "mass" was still contained in the skin layers. It was in the tissue - not in the bone. That is one good thing. He also stated he showed no "vascularity" with the mass. What he explained to me is that means there is no blood flow to the actual mass itself which means it is not "feeding" off of anything and growing that way. That is also good news. He stated to him it looked like a collection of something. That "something" is yet to be determined.
I went home that morning feeling hopeful. It didn't look the same color as all those images I had dreamed it would look like. However, it also didn't look like an "empty cyst" which I was hoping. There was something there. Something.
On Friday afternoon the oncologist office from Children's called and scheduled an appointment for Friday, Feb 19th. TWO WEEKS AWAY!!! I was happy that we were getting somewhere - but also disappointed. A part of me was hoping that the ultrasound would show something to someone and they would say - no oncology does not need to be involved and we just need to go see dermatology or endocrinology or some other "ology" department. But - that was not to be. So - as I write this I am just praying that the reason we are going to the oncology department is because of the unknown and not the known. I guess waiting has become something I need to become more comfortable with. I feel like I am just going day to day right now. Not getting anything done - yet wanting to get everything done. Trying to do things to keep my mind busy - yet always thinking of the "what ifs."
(Monday, Feb 8) I got a phone call from the nurse at Kady's peds office today. She wanted to verify that the oncology department had called and verified our appointment. I told her she had and wondered if she could tell me any information from the ultrasound. She was a little taken back - I don't think she realized that our doctor had sent us for the ultrasound - but she quickly found the report for me. From what she saw - everything pretty much was the same as it was in Oct. The ultrasound showed some swelling and some fluid that was not present in October -but the "thing" is still the same. Could be cellulitus - could be something else - could be lipoma - could be something else - they just don't know. So - it is the unknown that is sending us to the oncologist - not the known. That is a relief for me. I was afraid when we heard from the oncologist department so soon after the ultrasound that it was not good news. But - it actually is just "unknown" news - and that is something I can live with for the time being. So - we will wait two weeks and go and see the oncologist. I told Chris I am prepared for a visit that reveals nothing and that tells us nothing - but I will NOT sit back and let them DO nothing again. I am ready and willing to be pro-active in this endeavor and get to the bottom of this thing. I WILL NOT sit back any longer and let the "unknown" take over my life!!!
(Friday, Feb. 12) Kady came home from school last night - definitely under the weather. When I picked her up from school, she didn't come bounding out to the van as usual. She came at a slow walk - not her light, quick step. And then, she coughed the ENTIRE trip home. And that coughing did not stop at any time in the evening. There were times where I was wondering if she was going to hack she was coughing so hard. I checked - no temp - but all she wanted to do was lay down. I sent her to take a nice hot, steamy shower before supper hoping that would help - it didn't. She picked at her food and then spent the rest of the evening in front of the TV. I gave her some cough medicine, some vicks to rub on her chest and feet (old wives tale) and put a steamer in her room and hoped we would get some sleep. She was out within minutes and it was an hour before her normal bed time!!! She slept through the night - and then I had to wake her up the next morning for school. Now - this is Valentine Day party day people and she told me she didn't feel well enough to go to school. OK - that is definitely an issue. So - we called the doctor for yet another appointment and Chris took her. The doctor checked her all over and found NOTHING!!! After a month of snotting, coughing, drainage and congestion - we are back at NOTHING! So - he determined it had to be something viral and Kady decided she wanted to go to school. So - she is at school today.
Now - yes, I went into thinking mode again - wondering if "what if this really is some type of infection sac in her arm". Maybe the reason Kady takes FOREVER to get over any illness is because her body is fighting this "thing" in her arm and whatever new illness she has gotten. So - that is what I have decided today. I am thinking it is a good thing I have no medical degree. I could just be REALLY dangerous with that thing once my "thinking" started. :)
(Monday, Feb 15) Kady is still not feeling her normal self. Slept until 8 o'clock this morning and coughed most of the evening. Her head seems to be "less" full of junk - but it seems to never cease running down her throat! I know this is awful to say - but I NEED sleep!! Chris and I talked last night in the night as we both lay awake listening to her cough - that we actually took her to the doctor in December for this same thing - it just has NEVER gone away. I guess maybe viruses can hang on for that long - but it is getting REALLY old.
(Saturday, Feb 20) Yesterday turned out to be a day we did not expect. We left at 5 AM for St Louis Children's Hospital. We got to the hospital and met with the oncologists. He was also aware of the fact that the mass was larger than it had been the last time we had seen them and that we were at the end of our rope. They told us we had two choices - we could sit back and "wait" or we could take further action and get a biopsy done. We both let him know that plan B was where we wanted to go. He told us he would try and see if a surgeon could see us that day since we had such a drive. Within about 10 minutes a surgeon was up in the oncology department examining Kady. She told us she thought it would be a rather simple procedure and that she would check with the "head" surgeon and find out what he would like to do. It wasn't long before the oncologist asked us if we would be willing to do the surgery that day. YES!!! So, we headed down to same day surgery and quickly met with the surgeon. He examined Kady's arm and told us he felt like he could simply remove the "mass" instead of doing a biopsy. So - we went back to a room and got the process started.
Now - let me stop here and say that we had some explaining to do to our 6 year old. I had PROMISED her the night before that she would NOT be going to "sleep" again at this appointment on Friday. So - we had to tell her that I was wrong and that she would have to go to sleep again, but this was good since the doctor would be taking out this "thing" once and for all. She was very OK with this and her only concern was HOW the doctor was going to "take it out". I explained that the doctor would have to cut it out. She looked at me with these big eyes and said "Won't that hurt??" I explained to her that she would be asleep and would not feel the doctor "taking it out." That was all she needed to hear and she was good.
So - back to where I was - we got prepped and then learned that our 12:30 surgery was not going to be a 12:30 surgery. We ended up waiting until 3 PM for the surgery. Which was a LONG time to wait considering we had eaten breakfast in the wee hours of the morning and we did not want to eat in front of Kady - but we were not going to complain. We were just happy to be getting what we had hoped for - this "thing" to come out of our daughter. So - Kady went into surgery at about 3 PM and we were called down to recovery around 4 PM. The surgeon came in and let us know that everything went well. He explained that the "thing" looked well - it was not too irregular in shape and it looked benign. However, he also stated he could not guarantee anything until the pathology report came through. We understood that and we had prepared for that - but still I think a little piece of me was still hoping he would come in and say - this was just a "___" and things are fine.
Kady did great after waking up. No nausea, no crying, no nothing. She was eating a Popsicle a few minutes after getting back to her room and we left the hospital about an hour later. We were happy to head home - it had been a long day.
Saturday night, I think the numbing agent they had put in Kady's arm had worn off and the lack of sleep and very long prior day had caught up with her and Saturday night was a little rough for her. She could not understand why this arm hurt so bad. She even asked me at one point why we took the thing out if it was going to hurt worse than when it was in there. I had to explain to her that it would feel better, but it will be sore for a few days. She just hadn't yet learned how to be "gentle" with the arm and not lean on it or lay on it.
Sunday was much better. Kady woke up wanting to go to church - (Mainly to show off her battle scars) and has been in good spirits all day today. She did say something about her arm being a little sore again tonight - but daddy drugged her up good before bed - so hopefully we have a good night's sleep.
So - that is what we have been dealing with the last few weeks. We are hoping this ordeal is behind us and are anticipating news from the pathologist at the end of this week. It will be interesting to see what this "thing" is that has caused such a mystery over the last year. Only time will tell ...