Kristina texted this morning that her Neutrophil count had climbed to 410.  Surprising, perhaps shocking, but great news.

She's still requesting no visitors.  She does expect to be released from the hospital on or around the 25th and a long time friend from her youth is flying out from the east coast to take over care duties for the first couple of weeks.

She does, however, say she is feeling largely like crap, which, if I dare read between the lines, may be a small improvement.  but not much.  So Mucositis is still very much a thing with all the 'stuff' that goes with it.

Hopefully the symptoms will wane in the next few days as the blood counts improve.

Neutrophil Count at 190 and climbing

Kristina texted -- still no visitors, she's still dealing with Mucositis and all that entails.  Hopefully she'll start feeling better soon.

The good news is that the Neutrophil count is on a climb.  Previously she had warned it wouldn't be linear, but so far it's climbed every day.  A good sign.

Silver Lining

 I got a brief text from Kristina.  Still in the throes of Mucositis, vomiting and all.  But she noted a silver lining.  Her Neutrophil count.  40 on Thursday, 140 on Friday.  So even with all the misery, some positive news.  A silver lining.

Neutrophil Count at 40

 Kristina texted with the update that her Neutrophil count is at 40.  That's pretty low, but significantly better than zero or 'too low to count'.  It's a start.  It's a sign.  A good one.  

When I texted her back "Good start", I got four thumbs up in return.

She's still dealing with "all that other sh$&t" as a result of the chemo and is hoping it magically clears up.  

She is spending her days trying to sleep, but I suspect that's difficult.  

Short update today, but the positive news is that it sounds as if there are the first faint signs of cell recovery.

Tuesday August 15th. The deep dark hole after Chemo

 

Kristina knew the post transplant period could be intense, but I suspect she was hoping to dodge the worst of the complications.  She texted that she didn’t know it would be this intense. 

Right now she’s still fighting the after effects of Chemo with ‘Mucositis’ being one of the primary things she’s dealing with.

Mucositis causes mouth sores and inflammation of the digestive tract.  The symptoms are painful and miserable.  The sores can become an entry point for infection, and it’s already caused her care team to feed her via an IV, getting nutrients into her bypassing both the mouth and the entire digestive tract.

As the side effect is common, there’s a common trajectory that it takes.  It starts, spreads, then creates ulceration and inflammation and finally the cycle ends with healing.  The care team tries to manage pain and keep Kristina fed while the painful cycle takes its course.

Added to the problem was a hard sneeze she had earlier last week with a bite to the tongue.  Without platelets, blood clotting doesn’t happen and, well, it got pretty gross pretty quick.

Then there’s the ‘Chemo brain’ that sets in – the foggy feeling where it’s difficult to concentrate. 

So other than not being able to think clearly, or talk, being fed through an IV, things are, well, about what you’d expect.  She says she’s going through that “deep dark hole of chemo, mucositis, and everything else that goes with it.”

Her care team is confident that cell recovery will begin to take place in the next few days – usually between day 12 and day 28.  She’s at day 14.  Earlier she had hoped that she’d start feeling a little better by today but by the sounds of it, that hasn’t happened. 

It’s too early for graft vs host disease (GVHD), as that may happen when cells start to multiply. 

“GVHD” is where the immune cells from the donor attack the host, Kristina in this case.  It’s not a sure thing she’ll have some version of it, but four out of five non related donor patients are impacted.  The very treatment that introduces life saving and rather magical stem cells also introduces a small army of immune cells who take it upon themselves to attack the very patient that the stem cells are trying to save.  I’m sure that there’s a more technical way of putting it, but with cancer, it seems that every treatment comes with significant side effects that need to be managed.

So that’s where we are today.  At her request there have been no visitors, and for now (unless you hear it from her directly), that holds.

Send prayers and positive energy.

Friday Aug 11th. Still not feeling well

 

The emoji's above were all I got this morning.  Just these three.  I'll hang my hat on the last one.  The battle continues.

The team thinks the tide will turn on day 14, August 15th.  Hopefully then, just 4 days from now, she will start to feel better.

Wednesday am August 9th - still feeling pretty miserable

At Kristina’s request, we held off posting as she was feeling pretty miserable.  She felt a ‘wee bit’ better on Monday, but the last couple of days have been rough.  Monday night was ‘super rough’ and this morning (Wednesday) she was feeling absolutely miserable and requested no visitors.

All of this wasn’t totally unexpected.  She had hoped to avoid some of the worse impacts of Chemo and transplant, but that doesn’t appear to have happened.  So worse than what was hoped but (very generally) about what could be expected. 

She’s being fed now via parenteral nutrition (TPN) which bypasses the stomach and introduces nutrients right into the bloodstream. 

This too isn’t atypical.  AML patients undergoing stem cell transplants are subject to malnutrition caused by cytotoxic therapies.  There’s that word again, Cytotoxic.  Cell killers.   Wreaking havoc on the digestive tract.  So they’re bypassing it to give her nourishment.

So the two asks today are to again check out the go fund me site and to simply send her prayers and positive energy.  If she doesn’t get back to you, it isn’t for a lacking of wanting to, it’s just that she’s feeling miserable and really doesn’t have the ability to talk.