A Little Reassurance

The doctors today are very pleased with Aaron's progress.  His numbers that correlate to his immune system are within the range they like, even though they have been trending downward the last week.  They are not concerned.  His skin GVH has been very responsive to the steroids and looks much better.  However, he now looks like he has been tanning by the beach for a week without sunscreen.  He was started on a medication that should decrease the EBV levels to zero within the next two weeks.  All of these things are promising.  He is still very irritable, not talking much, and won't get out of bed.  Steroids are awful!

On a brighter note, Michael came into town and gave me half of a day off.  I was in the middle of doing laundry and a RMH employee asked if I would like to have a massage.  There had been a no show.  I was hesitant knowing I had a million other things to do, but I said yes.  It was wonderful!!!  A one hour full body massage for free.  Michael has a friend that lives near by.  They met up this evening to hang out for a couple of hours.  This was a good day!

GVH (Day +27)

Aaron was diagnosed with graft vs host disease yesterday.  He has a red raised rash over his entire body.  They doubled his steroid dose to help.  Aaron became combative again and was hard to control.  He started talking again yesterday, but still won't get out of bed.  He hasn't walked in over a week.  This has been a hard week.  I am terrified of GVH; it ranges from mild to deadly.  However, the doctors say some GVH is a good thing.  It means that his transplant is working.

I am so thankful Marsha has come into my life.  She had a transplant several years ago and she is able to provide a calm that no one else can.  She is living proof that there is normalcy in our future.  Thank you!

Trying Everything (Day +25)

Aaron is itching like crazy from a rash. The doctor keeps saying it is from dry skin, but it looks worse and worse each day. It may be GVHD. He is opening his eyes a little, but he mostly keeps his eyes closed all day. He still won't get out of bed or play.

No one can tell me what is wrong with Aaron. We have tried pain meds and nausea meds. He is getting stool softeners and now we will try itching medicine. Every day I wake up hoping he will get better.

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Prince with a pink pacifier

Aaron still feels crummy. In fact everyday is a little worse lately. He is grinding his teeth so hard that we encourage him to use a pacifier. By the end of each day he has ground down the pacifier with holes in it. The hospital keeps giving him pink pacifiers.




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Good Days and Bad Days (Day +22)

We have as a lot of ups and downs this past week. Aaron was entirely off his pain meds last Friday. He would leave the room to walk and go to physical therapy. He played and was returning to his old self. The past two days he hasn't wanted to get out of bed, play, or watch tv. We are putting him back on pain meds to see if that helps.

He also won't eat. Poor nutrition increases his chance for graft vs host disease, which we want to avoid at all cost. He got a feeding tube in place a couple of days ago. He already coughed it out once and we had to replace it.

Last night he woke up screaming in pain, desaturating, high heart rate, and rapid breathing. The doctor came and said he does not know why this is happening. It may be a flare up of his parainfluenza.

He also came back positive for EBV yesterday. Right now his levels of virus are low. They will watch it closely.


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A+ for Aaron (Day +19)

The doctors gave Aaron an A+. He has no infections, his organ systems are all working normally, and he is walkingu around. They are very impressed with his progress. 

DNA Results (Day +17)

Aaron's immune cells were tested. They are 100% donor cells. This means that his transplant worked!


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