Day -9: Fludarabine Starts

Today we start Fludarabine, which is Zoe’s 2nd major chemotherapy medicine in the Reduced Intensity Conditioning (RIC) regimen. Fludarabine is designed to eliminate fast growing cells, any fast growing cells. Cells in the bone marrow are very fast growing so they are what will be most affected. Campath is a drug that specifically targeted Lymphocytes (virus fighting cells that are part of any normal immune system), whereas the Fludarabine will eliminate everything in the marrow. It may also finish off the last of her hair, but Maya was nearly bald until she was a year old, so we’re used to that.

It’s considered a well-tolerated medication, so we are hopeful that we won’t see anything at all this week, other than a drop in cell counts and perhaps some fatigue. So far that’s been the case.

Zoe’s counts came back up a bit over the weekend:

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  • WBC: 2.9
  • Hemo: 9.5
  • RBC: 3.12
  • Platelets: 730
  • Lymphocytes: 3%

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We’ll continue Fludarabine until Friday. Also on Friday Zoe will get an additional Central Line placed, which means surgery. Hopefully the last major one.

We’ll be admitted to 5200, the Pediatric Blood and Marrow Transplant ward on Friday after surgery, and we will then begin the last medications before the transplant itself next Wednesday.

Zoe is handling all of this as well or better than we are. She’s a fantastic baby.

httpv://www.youtube.com/watch?v=OUK7rlXxYlk

Good Humor

Wanting a snack after our lunch yesterday, Evan trekked to the hospital snack shop where he called me with ice cream options. Klondike bar? Ice cream sandwich? Good Humor Bar? Nestle Crunch bar? Wait. Did you say a good humor bar? What on earth? How could I resist getting a good humor bar during Campath week? What the heck, I’ll try it. We could all use some good humor.

It was packaged as a strawberry shortcake bar, and I ate it a little late so it was somewhat melted. One of the nurses had come into our room and was talking with us, and it seemed rude to eat ice cream in front of her. We talked, and the bar melted.

Eventually I found time for it. I looked at the label for jokes, not really expecting to find anything. There was an ad for the 10,000 winner “sweet stakes” (a pun!) though, check your stick to see if you are a winner. I pulled out the stick that I had carelessly wrapped in the wrapper. “Try again. Free chance to win a prize.” So, we hadn’t won anything. Where’s the humor in that?

So I wondered, where is all the good humor in this thing with Zoe? It feels like we are running a marathon, even a triathalon, and the task in front of us has felt so incredibly daunting at times. There have been days where the weight of it all has felt crushing.

We take things one step at a time and seize upon the good things. Good lab reports. Coos and playfulness. Pleasant interactions with medical staff. A fun email exchange with a friend. A heart felt visit or phone call.

Zoe’s beautiful quilt, made by a friend who chose colors so bold and beautiful it would make anyone smile. Whimsical interactions between Maya and the butterflies in our yard at dusk as she chases them, misses, and they fly away and then return to land on her hand, her shoulder, her hair. Little wonders all around.

How can anyone bear the weight of hardship without taking pleasure in the little things? Is it irreverent to look for the sun in the middle of the night? Do we choose to sink into bitterness for the hand that we have been dealt? Those “little things” that make up our lives are the things that save us. We are grateful for them all. Grateful for those moments, and grateful that we continue to have Zoe in our lives.

Day -19: Finishing Up Campath

Zoe has really impressed everyone around here, including her Mom and Dad, with her strength this week. We’re nearly done at this point, she’s half way through the last dose of Campath, and barring any problems it should be her last.

After yesterday’s unusual reaction, we’ve had a few more folks than usual pop in to take a look at her. It’s not everyday they see Harlequin Phenomenon, among her treatment team only her primary physician had ever seen it before as best we can tell. For the record, it is a harmless phenomenon, and it is not the same thing as Harlequin Syndrome, which is an unfortunate condition indeed.

Today’s counts look good:

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  • WBC: 4.5
  • Hemo: 10.5
  • Platelets: 22
  • Creatinine: 0.2
  • Bilirubin: 0.3
  • AST: 78
  • ALT: 48
  • Lymphocytes: 0

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Because of her platelet count, Zoe will get a transfusion at the end of the day to get her through to Monday. This is not unexpected, the Campath knocks down the platelets along with her Lymphocytes. We’ll be checking in on Sunday to be sure the transfusion does what it needs to.

Next week we’ll be in 3 times for counts, but otherwise it’s a “break” week. Zoe will be on Hydroxyurea to keep her immune system suppressed until the following week when we start Fludarabine and Melphalan, at which point we’ll be admitted in the lead up to the transplant.

It’s been an amazing week. A relief to be starting treatment, sure, but more than that a relief to see Zoe handling everything so well. We still have a lot of anxiety about things, but it’s different now.

Often the anxiety in anticipation of the journey is greater than once the journey has started, and I believe that’s how we’re feeling right now. Glad to have started toward Zoe’s cure, and optimistic that we’ll reach our destination safely.

Afternoon Update:

Without even a whimper, we’re done. Things went so well I’m waiting for something to happen, but at this point there is little left that could. Very proud of Zoe, she’s weathered the week better than we could ever have hoped.

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.