Lovingheart

Things are slowly getting better.  More itchiness but the pain in his throat is reduced.  The rash has changed, moving down his body.  The pain in his feet is probably the worst.  At first he was blaming the pain on too much walking.  He is using old shoes and didn't move much in hospital but it is the rash and nerve pain from the inflammation. These are the elevators.  Orange boxes open to the atrium with big windows. I didn't notice at first but a finger on Marlon’s hand in the last picture was making a statement.  When I asked him if that was intentional he said it was.  Oops, sorry for being rude.

What a rash.  Red and bumpy and covering a good portion of his body.  I heard last night they thought it was a strep rash, also known as scarlet fever.  I understand the name, his neck, head, and some other areas were dark red. Fever as well.  Very sore throat.  Not willing to even take a sip of water.  In some ways in more pain and feeling worse than going through transplant. They are now also considering that the rash is in fact GVHD.  They aren't sure so are treating both GVHD and strep. His rash is a little less angry looking but his face is still swollen and he is uncomfortable and in pain.  He will be in the hospital for a few days.

Ho hum, not a great day.  He woke me this morning to say he hardly slept, had a rash, and his mouth was sore and swollen.  After a call to the doctor, it was determined Marlon was to go to emergency.  The rash is not a bad thing but they wanted to see it.  Friday, they swabbed the mouth but the results of that weren't back yet.  So we spent the day at the hospital again.   Because his mouth felt so bad, he wasn't eating or drinking so they decided to admit him. This evening around 530, we arrived back at 8B, the BMT ward.  By this point, they found out the throat is strep, the rash is covering a good portion of his body, and his feet are in serious pain.  After eight, and he is still jumping out of his skin with the feet being the worst.  He hasn't eaten anything, and the cream for the rash made the itchiness more pronounced.  Unfortunately he hasn't slept well for the past few nights, so he has no reserves to deal with the discomfo...

Hospital visit this morning. Vitals, weight, blood work, meet with doctors and nurses.  Marlon has some new sores in his mouth which are not mucositis so they took a swab to see what they might be.   Otherwise his counts are good, still low but that is expected.  They are moving in the right direction Marlon’s brother came for a visit in the evening.  Nice to see my big boy again.  We hung out and then went for a walk to see what we could find for dinner.  So many choices in the area.  So much food that I didn't get it all in the picture. We ate at the RMH as Marlon should be avoiding public places So many e-bikes and mopeds zipping around.  More nerve wracking in the dark.  All the delivery drivers.  I get so nervous and have seen cars turning right and not noticing the two wheelers zooming on the bike lanes.

No medical procedures.  No doctors.  No nurses.  I flushed his PICC line, something that is done daily. I dragged him out in the rain this morning.  He went and sat indoors close to the house.  I bought some magnesium and a couple of other supplements for him. Then later in the day, he came with me for a longer walk.  He can't stay in the RMH by himself.  Even if a friend or his brother were to come visit.  The person would have to be registered with the RMH to stay with him without me on the property.  After supper, he took a shower, and was removing the plastic cover over his PICC line when his phone rang.  He looked out the window and his friend was in the parking lot with her mom and siblings.  A surprise visit.  They had come to town to watch a show and stopped by unannounced.  Luckily it worked out. Marlon had wondered why she was asking so many questions about the room. The gift he received for completing transplant...

He was set free today.  Let out of the hospital on day 22.  Everything seems to be leveling out.  His counts are steady.  His body is getting better at letting go of the fluids. The expectation is still that we will be staying at the RMH for several weeks.  Time will tell how long that will be.  I ask the doctors to not only speak in worst case scenarios but also best case to give a sense of the time range we are looking at.  No real answers yet.  They don't want unrealistic expectations. The nurses shook their pom-poms, and gave Marlon a parting gift as he left.