The Levee

Aaron and I ventured out to the Levee in Kentucky on Sunday. We went early when few people were there and stayed in the shade. We had a great time. We walked across a huge bridge and spotted boats and birds down below.

Too bad we didn't get to try the grilled cheese donut. Wow. Doesn't that sound interesting.

Aaron is doing well. His roid rage has stopped and his personality is coming back more than ever. I can tell he has been watching way too much tv when he counted to ten in Spanish today He could only count to five pretransplant. I think we saw every episode of Diego ever made while in the hospital.

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A Night Inpatient

I checked Aaron back into the hospital for a night, but I wonder if I was the one that needed medical intervention.  Since they have lowered Aaron's daily steroid dose drastically, his GVH has gotten worse.  To combat that, they have given him two high dose IV steroid infusions this week.  This sent him absolutely crazy.  He has rages nearly every second he is awake.  Sometimes, we are able to divert his attention and calm him down.  Most of the time we are not. 

Michael left for work Friday morning.  The entire rest of the day, Aaron screamed and stomped his feet standing in place.  The medication they gave me did not work.  I took him back to be reevaluated and they decided to readmit him.  This worked out well.  He has a new medication plan in place that seems to be working better.  Today was a much better day.  He still is not normal, but a little more manageable.  I thought I was going to lose my mind trying to care for him by myself. 

A Summer in Cincy

We had a long talk with Aaron's doctor and we got some news.  We will be staying in Cincinnati until Labor Day (if not longer).  Aaron is on REALLY high doses of steroids.  The steroids keep his GVH down.  However, the high doses are preventing his new immune system from being able to generate.  The doctor must lower his steroids knowing that the GVH will get worse.  They will watch Aaron very closely to monitor things.  The doctor is hoping to have the GVH and immune system under control by Memorial Day and then slowly wean off the steroids towards Labor Day (the doctor does everything according to Holidays).  The doctor said if not Labor Day, then hopefully by Canadian Thanksgiving (never heard of it, but apparently it is in October).

Although I am not excited about the news, it really wasn't unexpected.  My only concern is my job.  I would really like to keep it, but that is unpredictable right now.  The most important thing is to get Aaron better.

Trains and Popcorn (Day+77)

Aaron is sitting in the front seat with me watching trains. This has become our daily outing.

Can't believe it is already 77 days since his transplant. Wow!

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One week and in the ER

Overall, Aaron is stable. We have been out of the hospital for a week now. He has enjoyed his new routine at RMH. We found a spot nearby that we can sit in the car and watch trains go by. In twenty minutes we can see four trains. Aaron throws a fit every time we leave. He could sit all day waiting for trains and watch them go by. We wave at them. Today we got a horn back at us!

His skin GVH is getting worse. We are sitting in the ER right now. They decided to give him a dose of IV steroids and follow up in clinic tomorrow. We were also told that we will be in Cincinnati at least a month longer than planned. Aaron's GVH has to be under control before we can go.

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Two Goodbye Celebrations

When the children leave the hospital, child life has a good bye celebration.  I was making one last trip to the Ronald McDonald House to bring back our things when I ran into Meg, head of child life.  I told her I would be right back and we could have the celebration.  She apologized and said she could not make it because she was in the middle of a bereavement.  That was when I noticed what she was carrying in her hands.  She had a clay mold of a hand imprint that was not even dry yet.  This was just like the ones made of a new baby's hands, but instead of welcoming a new child into the world this family was saying goodbye.  I pray for this family and the other families who have lost their children here. 

This was a reminder of how fortunate we are to have made it this far.  Graft vs host disease is ugly and horrible and is the cause of death of so many BMT patients.  Aaron was given an 80% chance of survival.  I asked the doctor recently if his chances have improved since we have made it this far.  He said no.  Aaron's chances of survival are no better today than when we arrived three and a half months ago.  We celebrate him leaving the hospital and making steps toward recovery.  We don't let one day go by without appreciating our time together.  We know that this fight is far from over. 

Discharged (Day +68)

After nearly three months in the hospital, Aaron is a free man again! Back to the Ronald Mcdonald House for us. Yippee!!!!
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