mucositis

Day +25

/ Evan / 3 Comments

Zoe’s WBC count hit 6.8 this morning, up 1.3 from yesterday. Just amazing. No ANC yet, we aren’t getting daily differentials right now that she has entered normal cell range. I have been waiting for it to go down some, we’ve been warned repeatedly that it tends to go up and down, but so far she’s just building.

At the moment Zoe’s only real symptoms/side effects are the continuing mucus discharge (spitting up as she heals), pain twice a day when receiving the cell growth factor medication, and some pain around her bum breakdowns. All in all, we’re making progress in that she’s not having as much daily bone pain, nor does she have any more sores in her mouth.

As mentioned yesterday, there is a possibility we’ll be discharged in the near future. I’ve been asking around a bit about that, and it seems they look for good progress on counts — engraftment, no infections, and for the parents to be “ready” to handle the care.

When we first were in discussions to get Zoe into Duke and planning her transplant, one of the things that came up was that the fastest anyone had ever been discharged from the Pediatric Blood and Marrow Transplant wing is +23 days. At that time, being the guy I am, I thought, “Zoe can beat that!”.

Now, I have no interest in that. All I care about is making sure she is at optimum health before we’re released, and that we all know exactly how to handle things. The next few months will be stressful while we wait to make sure her graft holds and she is clear of GVHD.

On Monday they will do her Chimera test, which is a method of determining what percentage of cells are her old immune system, and what percentage are the new. We want to see mostly new cells. I have been cautioned that patients can get by with far fewer than 100%, as little as 20% donor cells, and live normally, but again we are hopeful for something north of 50% for this first test, the closer to 100% the better. We’ll get results back on that later in the week, it will be a big news day when we know.

httpv://www.youtube.com/watch?v=pJmVgRAGQ_Q

Day +8: Never a Dull Day

/ Evan / 7 Comments

Each day seems like a whirlwind here, or at least, a whirlwind as experienced through a dense fog of fatigue. The emotional ups and downs and new medical events prevent it from ever being dull.

Last night was long, Zoe had her first night with the “blow-by” oxygen, which is basically a big tube that blows oxygen past her face to boost her intake. They put it in place because when she was sleeping, her oxygen saturation level would dip down to 80 or 85 out of 100, which is too low for her to continue for any long period of time.

At first I thought it was the machine, it gives very chaotic readings for babies and Zoe is a squirmer, flipping her little legs all over and wiggling, such that the readings are often off. The nurses took a look at the waves this time however, and determined that it was accurate enough that we needed to play it safe. So, we brought out the tube, which lays on the bed near her head and blows a gentle breeze past her face, but makes the room sound like we’re suddenly seated over an airplane engine. It’s about as good for a sound night’s sleep as you’d imagine it is.

Because of the need for oxygen, a whole series of tests were triggered to be sure we have an accurate picture of everything. New blood cultures, preventative antibiotics, a new chest x ray and a new dressing all so far this morning.

Still, Zoe continues to be in great spirits. She still has mucositis, and though the volume of it has gone down there is a little blood spotting it now. She will spit up, get cleaned up, and then go right back to smiling and wiggling or playing with her toys. It’s a really amazing little spirit she has, kids are so resilient. An adult who just spat up what she is each hour would almost certainly be dour and grumpy, I know I would, but here she is ready to play after a few minutes of upset.

We also had a visit from the discharge coordinator, but after a bit of confusion I realized that they check in with everyone well in advance to try and start training and set up class times. We’ll need to know how to do pretty much everything the nurses currently do for us when we leave here. I suggested they check back in with us in a week or so, it’s a little too early for us to manage all of that and not forget something.

Her CBC came back, and we’re back to “<0.1” today, so it could be that the 0.2 was a fluke. Her bum continues to heal, which gives us hope that that is the reason for the WBC count to go down a tick, but it’s really hard to say. It is very early to see any cell growth. The count is especially likely to fluctuate with cord blood transplants, so it could be the start of that we’re seeing.

All in all, we’re right where we should be, perhaps a little better off medically than average. Zoe is not needing much pain medication above what she gets as a drip, is not needing oxygen during the day, and seems to be healing a bit from the worst of the chemo.

Now, about those cells.

Day +4: Mucositis

/ Evan / 2 Comments

We’re fully into the Mucositis now, and while it’s painful to watch Zoe struggle with it, it is part of the process.

What’s happening is that the chemotherapy has eliminated her white cells (which heal her) and caused much of the fast-growing tissues to break down with sores. That means her mouth, stomach, and digestive tract is raw, and where she can she is producing mucus as the body tries to deal with the sores without white cells to heal them.

It’s rough on her, but she’s doing as well as could be hoped we believe. Her spirits are mostly ok, she isn’t very playful or smiley at the moment for obvious reasons, but she isn’t in obvious pain most of the time either. We’re just trying to keep her comfortable.

Zoe has put on a bit more weight from all of the fluids, including a blood and platelet transfusion last night, so she was given her first dose of Lasix this morning very early. She apparently, erm, released a great deal of her trapped fluids from that in the very early morning. She lost more fluid than she put on for the first day in several, so the lasix did it’s job.

We seem to have settled into a rhythm for this phase of things. Zoe wakes up in the morning, has a lot of mucus to get rid of and has to do that, then after a bit settles down. Around mid-day she is in better spirits, even has a smile here and there and lets me play with her a bit. She goes in and out of this mood as the day goes on, with occasional bouts of pain and mucus, which finally settles out around 2 or 3 am when she gets to a decent sleep.

This will continue until we begin to see white cells, which will immediately begin to heal the mucositis.

On a programming note, I’ll be trying to post a picture most days for the purpose of documenting Zoe’s progress through this, but there may be days when they are a little less than flattering. From where I sit though, it’s hard to catch her not looking cute.