Day +4: Mucositis

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.

Day -1

Well, we made it through Thiotepa. Michelle deserves most of the credit, she had it rough last night with baths and gowns and Zoe refusing to eat out of the bottle. We contemplated having me stay over to help, but technically we’re only supposed to do one person in the room, and with Maya in town and expecting us we thought it better to stick to the plan. Still, kudos to her for getting through what had to be a rough night.

Zoe had her last bath late morning. The baths involve wiping down her skin really thoroughly with damp gauze pads to remove traces of the chemical being exuded through her skin. I didn’t realize this yesterday when I mentioned it, but apparently leaving it on or allowing it to accumulate can cause 3rd degree burns. As such we’re very careful to clean her armpits and little baby wrinkles where moisture accumulates.

Sleeping it off

But, it’s done now. This was anticipated to be the worst day of conditioning, and it was. Zoe is a trooper though. She didn’t like the wipe-downs one bit, but as soon as they were done she would calm down and resume her normal chipper demeanor. We’re very lucky.

Today we simply continue her maintenance meds and get ready for tomorrow, Day 0, transplant day. We’re bringing Maya and my parents in to cheer her on while she gets her transplant since they’re local, so that should be a nice occasion.

A lot of nerves here, but a lot of hope too. We are tense because it’s all come down to these next couple of weeks. We’re ready, but scared for Zoe. It’s a big deal, getting a new immune system. The vast majority of people go their whole lives having no procedures so major as this, and here she is plugging along at 5 months old for it. I find it pretty amazing.

Late update:

Well, as the day wore on things became a little more tense. Zoe’s pain got worse through a combination of the mucositis (from the melphalan), the soreness from blisters on her bum from Thiotepa, and probably some lingering aches from surgery on Friday. In general she had a pretty rough afternoon.

We did get a PCA device set up for her, she’s part of a study that allows parents to administer small amounts of pain medication (dosage regulated and on a timer) when they see their child needs it rather than have to wait for a nurse. It’s basically an IV that can’t be adjusted, but which will dispense a small amount of medicine when a button is pressed to stave off pain. It works wonders.

From here on until she recovers it will be a little bumpier than it has been. We made it through most of her conditioning with little impact to her in terms of discomfort, but now things start in earnest.

[spoiler name=”Day -1 Counts, for the record”]

  • WBC: 0.4 (will likely be “<0.1” by transplant time)
  • Hemoglobin: 10.6
  • RBC: 3.67
  • Platelets: 56 (she’ll get a transfusion tonight more than likely)
  • Creatinine: 0.2 (good)
  • Bilirubin: 0.5 (good)
  • Sodium: 140 (no longer an issue)
  • Lymphocytes: 4% (The way this was explained to me is, she may have a few going into transplant but they are neutralized and cannot multiply. They will slowly be knocked out in the next few days and will not be an issue.)


Day -2: Thiotepa Day

First off, I want to briefly say thank you to everyone who replied to my post yesterday, it was nice to hear from so many people with kind thoughst both in comments and via email. Your support is invaluable.

Last day of conditioning! Hard to believe, but we’ve now been through 22 days of pre-conditioning for Zoe’s Stem Cell Transplant. Today is Thiotepa, another suppressing drug that pushes her counts down in advance of the transplant itself. Thiotepa requires some unusual precautions because of the nature of how it is metabolized. Instead of primarily being passed through the digestive tract or urine, Thiotepa is largely secreted through sweat. This means Zoe becomes somewhat toxic for 24 hours after her 4 hour drip of the drug.

We’ll be bathing her every four hours to wash off the skin and be sure that none of the chemical remains on for too long. It will cause chemical burns, and appear similar to a sunburn I’m told. Zoe is not expected to feel particularly bad with this med, but she will require a lot of care to keep clean. We’ll be doing the sponge baths, and we have to remove her protective dressing from her surgery site because anything with abrasive or adhesive qualities can damage the skin while Thiotepa is being processed.

The worst part is that we are not supposed to be in contact with her skin. No kisses, no snuggling up that involves skin contact for 24 hours. For a baby, that’s hard, and it’s hard on us. I catch myself going in for a kiss or touch repeatedly and having to stop. We can hold her if we wear gowns, and we do, but it’s not quite the same.

In addition to the Thiotepa, Zoe has begun Tacrolimus, which is a replacement for cyclosporine with essentially the same uses but is better tolerated. She started Cellcept as well to assist with engraftment and protect against Graft Vs Host disease.

Yesterday Zoe wrapped up her Melphalan. I have to admit, I was fearing much worse than what she went through, but I’m told it is likely to continue to get worse from here on. We’ll be giving her pain meds regularly for the next couple of weeks at least until she grafts, in the meantime there will probably be some pain for her. Zoe had some bouts of discomfort that we treated with Fentanyl, and some flushes. We’re glad to be done with it.

Two more days and then we start down the road to recovery.

Day -4: Melphalan

Today is Zoe’s first of two doses of Melphalan, one of the more harsh medications that are part of her Reduced Intensity Conditioning regimen. She’ll get it today and tomorrow, then Thiotepa on Monday.

We’re told that Melphalan starts to take significant effect about 24 hours after it’s given, so we may not see much reaction today. We keep going into these days expecting the “other shoe” to drop, to see some really harsh reactions, but so far we have not.

Zoe got her Melphalan around noon, and hasn’t had any reactions as ofIV Tower 3:30. She dozed off and woke up very fussy a couple times, however, much more than usual — she rarely cries and she was very upset each time.

I am attributing that to soreness from her surgery yesterday, and we’re going to see about getting some pain medication for the rest of the day. We set up an “as needed” pain prescription before the primary doctor left last night for just that purpose.

It’s a little disconcerting to see Zoe reattached to the complex IV rig again, we were so pleased when she was done with that at her first hospital. This time we’re less hesitant though, less unsure about where we’re going. Zoe is hooked up to get cured, not to “manage” a disease, and somehow that makes a difference.

Day -6: Steady as She Goes

So far so good with Fludarabine. No reactions, she is taking it about the same as she would a hydration drip, we have seen little to indicate she is even on a chemotherapy med this week.

Her counts have been ticking down a bit, but not as precipitously as they did on Campath. Fludarabine as mentioned previously is a general fast-growing cell suppressor, so it should be reducing all of her blood counts somewhat. Her white has been going down and that’s the primary marker the doctors appear to be tracking. Her Lymphocytes are holding at 2-3% depending on the day, and her platelets have remained high so far.

We’re a few days out now, and what we expect to be the worst of the conditioning lies ahead. Tomorrow Zoe is admitted, goes into surgery, and has her last dose of Fludarabine. Saturday & Sunday are Melphalan, the sore-inducing med, and Monday is Thiotepa, which requires 5x a day bathing to prevent chemical burns on the skin.

We’re hoping that things continue to go as well as they have. Zoe has been wonderful, and while we can’t quite expect an easy ride, we remain optimistic that the Reduced Intensity Conditioning will allow her to meet her count goals without major pain. After that, we’ll be focused on getting those counts up in the wake of the transplant on Wednesday.

Update: Counts back

[spoiler name=”Click to show counts”]

  • WBC: 1.2
  • Hemo: 8.9
  • Platelet: 513
  • Lymphocytes: 0
  • Creatinine: 0.2
  • Bilirubin: 0.5


All in all we’re exactly where we should be. Liver and Kidney markers are good, Lymphocytes mostly gone, WBC down where it should be.