Dear Friends and Family,

Wednesday, September 22, 2004 - all is well and good . . . as good as it could be. No major problems or upsets with Aaron except for the usual pain and grief felt each day.

About 2 weeks ago or so, we began to notice some subtle changes in Aaron. We obviously knew he was getting weaker and weaker and was no longer using his legs. We started to realize that once he was out of bed, he had to be kept propped up with pillows or cushions, or he would eventually topple over. I also had a hunch, a gut feeling, that he was beginning to lose his ability to swallow - liquids only; food went down fine. But when he would drink, we would almost always choke. It was very difficult for him to hold up his head too.

We had had a hospital bed delivered on Tuesday, and a meeting planned with some of the hospice people for today. We met with the doctor and our social worker, while our hospice nurse sat with Aaron.

Well, I was right about the swallowing; he was losing his ability and it almost always starts with liquids. The doctor suggested buying some "Thick-It" to be added to his water, which would thicken it up enough for him to swallow and take his very necessary medications.

As I started saying, it was an uneventful day. After Gary came home from work, we got him changed and all his pills taken and we put him to bed. Shortly thereafter is when the trouble began.

10:00 pmish Wednesday Night - the vomiting began and continued through the rest of the night, about every 30-40 minutes. Gary and I took turns which was fairly difficult, because Aaron cannot sit up by himself. Se here we were, trying to prop up dead weight while holding a bucket . . . and just to try and get to him fast enough before he'd start throwing up.

Thursday, September 23, 2004 - I arose early (as I always do), and began to get ready for an unpredictable day.

Aaron slept later than normal, and when he finally did wake up, I noticed, that at some point, Gary and I had "missed" a throw up. It was all down his neck and on his shirt and I knew at that point he had aspirated some, which was the beginning of my concern and worry.

As it was later than normal, and with Gary having to leave for work, I knew I'd need someone else here to help me get him out of bed and to the couch. So I phoned our hospice volunteer, Pat, who said she'd be right over. It was then I noticed him tremoring all over and how much more weak he had become overnight. My concern turned to worry, so I also called our hospice nurse to come and take a look at him.

I was also wondering how I was going to get his seizure medication into him - which was already an hour overdue - and with him still throwing up. It seemed like it was taking the nurse forever to get here. He did manage to take his 2 seizure pills, but by the time we got him in his wheelchair and to the couch, he was "out of it". He just lay on the couch, not able to speak, staring into space.

The nurse got here; he was no better. About 1/2 hour later, the seizing began. By this time, the hospice doctor was on her way here and we began to administer his "emergency" medicine to try and stop the seizing.

Needless to say, it wasn't helping much, so we all awaited further instructions from the doctor and by now, Gary was on his way back home. My gut was telling me he wouldn't make it through the night. He never did come "back" to us.

He began to have consecutive seizures that needed still other/different/more medications. Gary and I both agreed he was not going to any hospital. If he was dying, he was going to die at home.

Any and all family came and the house soon became a flurry of activity . . . a lot of nursing, hugging and crying. Our Pastor came and prayed with us and anointed Aaron, as well as Fr. Paul, who also gave his blessing. This intense care and flood of emotion went on throughout the rest of the day until we all became overwhelmed and numb.

Aaron began to rest comfortably, with the occasional choking/vomiting and very labored breathing. It was decided, when the hospice doctor arrived, to introduce morphine to help calm him and soothe his erratic breathing. He had an immediate reaction to the morphine and got covered with hives; his temp was still hovering around 102, and he was having periods when he'd go into an apnea. The hospice nurse stayed the night.

Friday, September 24, 2004 - Our hospice volunteer (Pat) was the first to arrive back. Aaron was still in a state of semi-consciousness and still running a fever and pneumonia was confirmed - but no more seizures. The IV Ativan seemed to be doing the trick, which he was now getting around the clock. We were also giving him Tylenol suppositories to try and reduce his fever.

Our nurse worked up a schedule for us - when he gets what and how often. We were running into a time problem, because Catherine (our nurse) was leaving town for the weekend, and, because Season's Hospice only employs 2 full-time pediatric RN's, we were going to be without the 24-hour nursing care for the remainder of the weekend.

The day, as a whole, was pretty "uneventful"; as uneventful as can be expected during/waiting for the dying process. Aaron became more roused and toward the end of the day, was beginning to try to communicate. He would call for me, but then I could never understand the rest.

My sister Betty agreed to spend the night with Gary and I to help out with Aaron's care, as well as keeping us on track with the schedule Catherine had worked out for us. We were, needless to say, a little uneasy having no nursing care, but we managed just fine, and kept Aaron as comfortable as possible.

Aaron made it through another night, keeping up his brave struggle, even though Gary and I had both repeatedly told him he didn't have to be brave anymore; it was time to rest.

We did have more periods of the breathing apnea, and very labored, shallow breaths. Even a couple of times, he'd stop breathing all together and would turn completely gray. The vomiting had now ceased, but he still had a great amount of congestion and we couldn't break his fever at all. Gary and I slept in shifts and before we knew it, another day had begun.

Saturday, September 25, 2004 - Aaron was now more coherent and really began trying hard to communicate. As I mentioned, he was being heavily medicated around the clock; his fever was now stuck in the 101's and we were able to bathe him.

Even though he was "talking", for the most part, we couldn't understand him. He began taking more fluids by mouth via sponges and was "acting" more and more hungry.

The hospice doctor had removed his TPN as of Thursday, so he was now not getting "filled up" anymore. I asked about dehydration and possibly giving his TPN again, and as the hospice doctor explained, that would only upset his stomach and probably bring on more vomiting, as well as introduce more fluid build-up in his lungs.

So, we trudged on through another hectic, emotional day. Gary and I both began wondering if this whole scene was just another cruel joke; as if maybe - like the last time he was in the hospital - he had caught some bug.

Dr. Battle assured us (or at least tried to) that she was pretty confident he had begun the dying process, especially now with the pneumonia and fever. She explained to us "the rally". How sometimes as people are dying, they seem to have a momentary "miraculous" recovery and come to, as it to say their last goodbyes. Maybe that's what we were seeing then. Only God knows the answer to that.

Sunday, September 26, 2004 - Aaron hung on another day, but is now much more uncomfortable. When he is not asleep or medicated, he cries inconsolably. He tries desperately to speak, but cannot; he barely has the energy to put any air behind his words. This, of course, only frustrates him more (as it does us), and makes him cry harder.

When the hospice nurse arrived, we asked if there was ANY way to make him more comfortable and calm him down. It was decided to increase his Dilaudid and to give him his Ativan every 3 hours as opposed to 4.

This seemed to do the trick and allow him more periods of rest. The day was spent with Gary and I (and now his daughter Lisa and son-in-law Nate), taking shifts sitting by his side and giving him sponges of water from time to time.

We were extra frustrated because we knew too, that he was very hungry. The hospice doctor suggested, "pleasure feeding" with pudding or applesauce. We had to be careful because of his inability to swallow. We tried some pudding, but it didn't really seem to satisfy him; oh well. But once the "extra" Dilaudid was introduced, he calmed down and slept through the rest of the day and most of the night (waking up only long enough to cry some more or take some water).

Monday, September 27, 2004 - Another day sitting vigil, this time along with Mom and Dad Greene, Grandpa Roy, and Aunt Margaret.

He was VERY uncomfortable and it was early on that we phoned the nurse. He would awake for periods of about 30-40 minutes and sob and then choke. Needless to say, we were all sobbing too to see him in such distress.

More frantic phone calls, and once again we were allowed to increase his Dilaudid and the nurse was on her way.

By the time she arrived, his respirations were at 16/minute. He had no air moving through his left lung and VERY little through his right due to the pneumonia. We were basically sitting here watching him drown. She prepared more medicines for us, and by the time she left (maybe an hour and 1/2 or so later), his respirations had dropped to 10.

Lisa and I had been on shift since 2:00 am and were really beginning to lose steam compounded by all the hysteria. Gary, Nathan, Dean and John took over duties around 6:00 pm, and Aaron, somehow managed to hang on through yet another night, with his temperature rising and respirations fluctuating.

Tuesday, September 28, 2004 - We all gathered again around 2:00 am - the night and day shifts.

It was about 2:30ish with his temp over 104, he really began slipping away. Very labored respirations and he was turning gray.

As I sat there, listening to him literally drowning, I could bear no more. I didn't think I could even cry anymore. It had all become a "dream sequence" and I felt very detached, as if it wasn't really happening.

Aaron was always a good boy . . . never misbehaving or getting into any kind of trouble. He's always listened to Gary and I and never did anything wrong - until now. If there was ever a time I needed him to hear me and really listen to me, it was then.

I kept telling him, "Let go, it's time to free yourself from this defective body", to "go and run and play again, and ride your bike, and fly to Mars", but he wouldn't listen!

I told him he's got a better place to go to and that he's got a job to do - which is take care of his baby sister Elaine. "It's time to surrender" - that "it's OK to go". And yet, he hangs on. The suffering I have witnessed over these past days, which have all run together, is just plain WRONG, and quite unbearable.

All of us have repeatedly called upon the Almighty to come and take him home and we still go unheard.

Again, Gary and Nate began their shift around 1:30 pm or so, as Lisa and I could barely keep our eyes open. We had had so many "close calls" during the night; we were physically and emotionally exhausted. We both went to get some rest.

I had a feeling Aaron was giving up his fight. His fever was now over 105 and rising, and quite unbelievably, he was still breathing. I don't know how or even how his little heart could keep up, so when I went to rest, it wasn't too far away. I grabbed a pillow and laid on the floor next to the couch.

It had to be somewhere around 2:30, when we all knew, he was finally surrendering. I, my 2 sisters, my mom and dad were all telling Aaron how much we all loved him and kissed him, and hugged him as best we could. My sister frantically ran to get Gary and Nate and Lisa out of bed, but by the time they were at his side, he had stopped breathing. Now only his little heart was still beating - but losing the battle. He took his last breath at 2:53 pm.

He flew away - to the heavens where an angel like him belongs. He can now run and play on legs that work. He can see all the pretty colors the heavens have to offer. He can hear all the beautiful sounds of all eternity.

Yes, I am completely empty and numb and angry. It was all so pointless. But somehow, Gary and I will have to get on with what's left of our lives. I haven't quite figured out how we're supposed to do that yet, but I guess it will come to me.

Anyway, that was Aaron's struggle. I/we thank each and every one of you for all the moral, spiritual, and financial support you have given. I think that's how we've been able to make it this far. None of that will soon be forgotten; by Gary or I - or Aaron. We all have to remember him as we was - a beautiful, charming, funny, smart, blonde-haired, blue-eyed jokester who touched many, many lives, and I believe, will continue to do so.

Love,

Florence