Day +16

Everything is going well here.

Zoe had physical therapy and she’s ready to explode we think, now that she’s starting to feel better. Once she loses a bit of weight she will likely have an easier time with the developmental steps — sitting on her own, holding her feet, rolling over.

She is sitting mostly unsupported, just with a hand at her back, working on her tripod. She can roll half way over, but her little legs drag her down, keeping her from making it all the way. She is trying, however, and at this point I think that’s what we want to see. She knows what to do but the circumstances are holding her back a little.

Zoe’s WBC was 0.3 (300) today. Down slightly, but good news overall since she is holding her count. If she remains at 0.3 or above another day or two we’ll have met another milestone on the way to engraftment.

As I mentioned yesterday, we’ll be focusing on her ANC for awhile. The first goal is 500 for 3 or more days. Today her Segs were at 48 with no Bands reported, which means our ANC calculation looks like this:

(SEG +BAND) x WBC = ANC

(.48 + 0) x 300 = 144

On on!

Day -22: Starting Campath

We’re off and running now. Campath started today at 11:30am on a stepped dosing process, which means she gets an increasing dose every 15 minutes under observation until we reach the full test dose. The test dose will run for several hours, and is 20% of what she will receive the rest of the week.

Zoe was given pre-meds to help her manage the chemo: hydrocortisone (steroid), benadryl (antihistimine), tylenol (fever), and demerol (pain).

She is asleep, no surprise. We’re told to expect hives, rashes and fevers, so we will see how things go.

Zoe’s blood counts brought good news today, something we are grateful for on this day in particular. Her Creatinine, a marker of kidney function, is now down below .1, which is as low as can be measured. Her most recent test on Friday was .2, which means that her kidney function has improved measurably. Go Zoe!

The numbers:

  • WBC: 5.0
  • Hemo: 10.4
  • Sodium: 137
  • Platelets: 667
  • Seg Neutrophil: 38
  • Lymphocyte: 55
  • Creatinine: <0.1
  • Bilirubin: 0.5
  • AST: 37
  • ALT: 20
  • ANC: 1900

These are the numbers we’ll be following most closely from now on. The creatinine as mentioned is a marker of kidney function. Bilirubin is a marker for liver function, and it’s currently perfectly fine.

AST & ALT will be monitored to determine if we need to hold the Hydroxyurea. If they rise to 3x “normal” or mid-range, then we hold it. 3x “normal” is ~180 for AST, ~66 for ALT.

ANC means Absolute Neutrophil Count, which is a somewhat complicated calculation that measures immune system function. We can expect that to go up and down, but mostly down, during conditioning. After Zoe’s transplant this number will become our holy grail. We’ll be looking for her cell counts to go up and her ANC to rise and stay above 500, as I understand it. We’ll learn more about this closer to the transplant.

The campath will quickly reduce the Lymphocytes, which is what it is there to do. The “segs” will remain elevated and the ANC, which counts both, may therefore stay high initially. Eventually we expect it to go way down and not recover until after transplant.

Afternoon Update:

Zoe’s first day test dose went very well. No major reactions today. She had an elevated heart rate and very mild fever for about an hour, but was otherwise fine.

Because Zoe did so well, we will be giving her Dexamethasone for the next 3 days during Campath instead of the normal steroid given. This is because Dexamethasone penetrates the blood/brain barrier more effectively, and with HLH it can do more to suppress any abnormal cell activity than the traditional steroid given with RIC.

Tomorrow we continue the chemo and step up from the today’s test dose (which was 20% of normal strength) to the full dose. We expect if we’re going to see a reaction we should start seeing it tomorrow.

Checking In

After last week’s lower immune counts we had skipped the VP-16 dose for the week, so today Michelle is in the clinic “catching up” a bit.

Zoe’s vitals are back up nicely for the most part, with the exception of her sodium and ferritin. Her sodium has been hovering at a lower than expected count, 127 (where 133-142 is normal), and the doctors are not sure why. Michelle’s sodium intake is quite low, so we’re going to take their advice and up her Gatorade (and junk food?) intakes. More bouillon cubes please!

The ferritin count is trending back upward, a worrisome sign. Ferritin if you recall is one of the markers for disease activity, so we want to see that trending down or remaining static, particularly as we look to move ahead on the SCT soon. We do not want to see disease activity right on the verge of starting her transplant process. Hopefully we’ll know more next week, they’re doing another count today and she’s getting the VP-16, which should have an impact.

There is some concern that we might be seeing the beginning of drug resistance in that ferritin reading, and the feeling is that we will need to move forward soon on the SCT if that is the case.

Feeling a bit tenuous here. Low sodium can mean hospitalization, high ferritin could be a warning sign of a return of the active disease. Better immune counts are our silver lining at the moment. I really want to see her go into her transplant with all systems in top shape.

Vitals for the week:

  • WBC: 9.1 (5-19.5 normal, this is way up thankfully)
  • SEG Neutraphil: 1.456 (also way up, a positive sign)
  • Sodium 127 (133-142 normal)

httpv://www.youtube.com/watch?v=QyOyVv43lsE

Ups and Downs

One thing we’ve come to understand about this disease from reading others’ stories is, you must be prepared for the ups and downs. It causes a lot of havok, and can generate swings in the body’s natural function.

We have been fairly lucky so far with Zoe, she has weathered it well all things considered. Here’s hoping that will continue.

Last week Zoe’s immune count marker (SEG Neutrophil) was up to 2.0 or 2000, this week it’s back down to .2, or 200. Not a good swing for us.

So this week we’re back in huddle mode, windows closed, no going outside for her to enjoy the beautiful weather until she has rebounded again. Dr. W felt it was likely due to the chemotherapy regimen, but we are wondering if she is not also struggling with her first pollen season.

In retrospect, it was probably a bad week to spend much time out, pollen in our region is still fairly heavy.

Vitals this week:

  • WBC: 3.1 (5.0+ is normal)
  • RBC: 2.83 (3.1+)
  • Hemo: 8.6 (9.5+)
  • SEG Neutrophil: .2 (1.0+)
  • Platelets: 250 (150+)

Rolling with the punches here.

Hopefully next week will be back to where we were last. We’ll have more to report about the outlook for her Stem Cell Transplant soon.