Day -21: Campath Full Dose

Our second day of conditioning brings the first full dose of Campath, and a much higher chance of a reaction. So far this morning we’ve done her pre-meds with the addition of Dexamethasone as the steroid, and begun her Campath. The chemo is still administered on a stepped schedule, a small dose, then a slightly higher dose, then the full amount for the remainder of the day.

Zoe’s counts look good:

  • WBC: 18.2 (higher)
  • Hemo: 9.9
  • Lymphocytes: 1 (her partial dose almost completely wiped them out — this is intended)
  • Sodium: 138
  • Creatinine: .3 (up from yesterday, we’re told it will go up and down with the conditioning)
  • Platelet: 331
  • Bilirubin: .4 (still fine)
  • AST: 44
  • ALT: 21

So, no major changes other than a drop in platelets and lymphocytes, both expected. I’ll update later with any reactions and changes, she has only just begun the Campath so it’s calm at the moment.

Afternoon Update:

Everything has gone really smoothly again today.

Minor Campath Rash

Around 3pm, Zoe started some minor rashes on her face and head, no where else. She’s been very sleepy and calm all day and we were beginning to think she would plow on through day 2 without any side effects. So far, things have gone much better than we expected.

We finished the Campath and her rashes showed up just as we began the saline flush, exactly the same as yesterday’s slight fever. Nothing to be concerned about, Zoe is doing great with her treatment at this point.

Blood pressure has held steady around 100/65 most of the day, temperature averaging about 98 degrees.

So far, so good.

Zoe’s Development

I’d like to note a few things about Zoe’s development, since that is one of the things that can be affected by this process. The two main threats to good physical and neurological development are the extended use of steroids, and histiocytes in the spinal fluid doing damage to the brain if not caught soon enough.

Infant development is hard to put a finger on, since different kids do things at different ages, but it seems the best way to track it is after a certain point if she is not going x then we should be concerned, but we shouldn’t expect her to do x right at an exact time. The guideline I see most commonly is 3 months — if she is more than 3 months past due for a developmental step, we should look into it. It doesn’t necessarily mean a long term problem, but that’s the point at which we should be more concerned.

Zoe is 4 months old now, and generally at this age she should be holding her head up, resting on her arms when on her belly, smiling and moving her legs. She could be starting to try and turn over as well, from what I read.

With that in mind, right now we feel very positive about where she is. Zoe holds her head up very well, upright or on her belly. She still has a ton of extra weight on her face, and I am sure that that impacts her somewhat, but she is easily able to track people around the room, so it doesn’t seem to be affecting her too much.

She does well on her belly, usually propped on one elbow and one hand, and can keep her head aloft for a decent amount of time like that. She grabs toys, turns them around to look at different sides, and bats at them sometimes to make them jingle. She also has taken to throwing her arm across her this past week or so, which may be the first steps toward rolling over. To be honest, I’m not sure she will be strong enough for that for awhile, she has put on a pretty decent amount of weight from the steroids, but we shall see.

In terms of neurological steps, I’m not sure how well we can judge that yet. She tracks people with her eyes and moves her head when they get to far to one side. She laughs, smiles in response to seeing people she knows, and frowns when she sees something she knows she doesn’t like (like her med syringes). She has also taken to making noises in response to us when we are making noises and talking close to her, but I could be reading too much into that. 🙂

As best I can tell, we haven’t seen any problems yet. We still have a long way to go, but I am much more optimistic now than a month ago that Zoe will make it through without anything that would hinder her from having a perfectly “normal” life.

Not Yet

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.  ~Charles Dickens

We can’t go home yet. Last night was another hard night, more blood pressure scares as they tried unsuccessfully to rein in her rising hypertension. There were some moments of true fear where, when upset, Zoe’s BP rose to 180 and 190 systolic. Normal adult is around 120, normal infant… under 100.

It took the introduction of another new IV medication to bring her down, and by 2am or so she was holding steady around 124, a dramatic improvement over the past day. Today she was down to 119 or so, a reasonable number given that there is an expectation that her BP will be high due to the steroids. From what we understand from Dr. B, the longer a person is on steroids the worse the side effects become, and we’re definitely seeing that. Luckily the dosage of Dexamethasone was reduced by half, and we should start seeing some improvements. What we have seen today could be a result of that reduction.

That was the bad news. The good news is that Zoe’s kidneys seem to be functioning normally (hypertension often has renal causes from what I gather), her heart looks good, and there were no bad indicators or causes for worry on her EKG, ECG, or ultrasound tests that she’s had in the past two days.

I’ll take it.

2 O’clock and All is (mostly) Well

So far it’s been an uneventful day medically. Zoe has near constant visitors in the form of nurses with medications for her IV, but we have finally reached a point where it is routine and there is no immediate danger.

Zoe’s platelet count is up from 90 to 150 on her own, so that’s a very positive sign. Dr. B came by and we discussed some of our ongoing concerns, one of which is how much should we expect her counts to go back down as a result of the chemo, even as we are watching them rise with enthusiasm. He says that it will take as much as a week to see her counts take a toll from the Etoposide, and in the meantime good news is good news, so we can continue to be pleased by improvements we see. We’ll be watching for news of her inflammation to continue to decrease, watch for ferritin counts to start to drop, and hope that her temperature starts to stay at 98º instead of 97º.

Zoe continues to gain weight from the Dexamethasone, which we’re told will continue for awhile and then level out as her dosage is reduced in coming weeks. I spoke to Dr. B about potential complications from weight, but at this point developmentally she’s really only expected to be working on keeping her head up and perfecting her wiggle. There should be no problems there, and by the time we’re ready to see her trying to roll or lift up, she should be at a more moderate weight. She makes a cute butterball though, I’ll give her that.