*abandons FaceBook, gotta post*

Today is one of those days that I really value internet social sites. It reminds me that there is life out there and I CAN still be part of it.

Word of the day? Fruitful

Mom spent the day with Gregory and I got out of the unit for several hours. I headed over to the apartment for a leisurely shower. So nice to shower in complete peace and privacy. (Which reminds me. Note to people who design bathrooms for families with children. Especially children undergoing medical treatment!!!: Do not. I repeat. DO NOT, select bathtubs that are porcelain coated and are NOT slip resistant!!! The first time I put Gregory in the tub at Rony Donny’s, I didn’t even think to check the surface of the tub, he immediately slipped, I couldn’t grab him quick enough and banged his head against the edge. Not good on a normal day, even more stressful when platelets are low. Thankfully he didn’t fall to hard. I cannot put those slip resistant things down, unless I bleach them after every use. Bacteria/fungus I am seriously considering putting some marine tape down. I think I’ll look into this.) After my shower I checked out the local natural foods store. PCC Natural Foods. It is 14 blocks from Ronny Donny. Same street, too. Sweet!!! It did my soul good to simply be IN the store. Just to soak up the vibe. It was enough just to smell the place.* On the way to PCC I called Gene Juarez and was able to secure an appointment an hour later!!!!! I totally understand why people spend the money they do, in order to go there regularly. Personally I can’t. Once in a while, though. So totally worth it. Fresh, saucy haircut. Stimulating “hairdresser” conversation. Scalp massage. Priceless, really. Here’s the hair and a very tired, aged ME:
New do.

It won’t look like this in two days.  I don’t own a flat-iron.  Yet I wouldn’t take the time to use one, if I did.  Afterward  I ran to the local Yarn Shop of Love and picked up some Cascade 220.  Ryan:  you inspired me to remember my comfort zone.  It’s where I need to be, for now.  Then it was time to head back to the hospital.

When I got back, Gregory was happy and playing.  We got him unhooked and had to negotiate a bath.  He has had several changes in the last several days.  We have met quite a few new nurses and our medical team has changed.  We are on our fourth Attending and second PA.  Our Attendings are only on staff for two weeks.  I think Gregory is in need of a little stability.  Man, I can’t blame him.

We eventually got in the tub, got washed up.  His wound site from yesterday is bothering him, the water/soap hit it and he was immediately complaining of pain.  He had a dose of Tylenol this morning, for pain.  He has been without a fever for so long that we felt comfortable giving him Tylenol.  He was overdue for another dose.  The tub is down the hall from our room and today he wanted to be carried.  He was all bundled in towels and we were exiting the tub room when our Attending approaches us.  Here’s the part you need to read.  Are you still there?  Yep?  Thanks for sticking with me.  We received the results on Gregory’s Chimera test.  (Click on the link, it’s super interesting!!!)  This is where they look at peripheral blood cells and determine which are Gregory’s and which are the donors.  The beauty of Gregory’s transplant is that the donor is female.  Very easy to tell which are hers (now his) and which are his original cells.  Well.  His test showed that 100% of the cells were donor.  Yep.  No Gregory cells in this blood test.  We have yet to receive the results from the   Bone Marrow Aspirate, Bone Marrow Biopsy and the Skin Biopsy.  This test Chimera test tells us that his marrow is producing 100% donor cells.  It does not report the efficacy of said marrow.  That we will have a better picture of, tomorrow.  Please remember that I might not get a chance to post the results until Friday.  When we received this news, like I said, we were coming out of the tub room, Gregory was nakey and I was a little in shock.  Our PA approached us, too and eagerly wanted to be the one who gave us the results.  When she realized that Dr Bob had already told us, she was a little disappointed.  We were able to get to our room, I was holding Gregory as he was standing on the bed, cuddling him.  They examined his wound site, approved more Tylenol, we chatted a little more then they left.  I started to fall apart, at this point.  I feel like a rubber band that is stretched beyond it’s stretchablity.  When I processed this news, my body felt all rubbery, loose and spaghetti noodle like.  (Yes, mom.  This was BEFORE the beer I had.)  I’m having a hard time rejoicing in this news.  While I know I should be, I do not want to get my hopes up and be devastated.  We can have killed all his marrow, we can have 100% donor blood production and we could have his blood production still fail.  I don’t feel like I can take this to the bank, yet.  Stupid pragmatic brain.  Or is it self defense? 

Anyway.  We celebrated with McDonald’s and my new friend for life, provided a much needed fermented libation.  Mom headed to the apartment about 8:30 and Gregory was sacked out by 9:15.

I’ve been sitting here catching up on the interwebs and mulling over todays events/news.  Lots of things happening.  I’ve got more to report, but I’m just done……. I’m hoping to have some time to post some fun little things, tomorrow.  There have been so many moments of love, joy and discovery.  ’til later, gotta jet.

*Which reminds me. I HATE the way Gregory smells after procedures. I think it’s a combination of the Hibiclins, Betadine and the wound dressings. It’s this chemical, sterile, cold smell. *shiver*


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in chimera, day 28 bma, days 21-30. Bookmark the permalink.

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