Having fun in the bath with a syringe. Not a common bath toy…except in the Kabel Home.

This was Sally the majority of the week, mushy. She’s in there somewhere under those cheeks.

Sunshine peeking through.

Hi all – first off, great news. We finally got the marrow test results back and Sally is still in remission! We’re relieved can stop holding our breath for the next few weeks until the next test.

Nicole brought Sally in for a quick appointment today where she got a quick push of chemo. Your neutrophil dances appear to be working, especially Esme’s, as Sally’s ANC level rose to .4 and her other counts look stronger. She’s still neutropenic until she gets to .5, but appears to be heading in the right direction. She also tested positive for RSV…again…so will continue to be in isolation until she fights it off.

We did receive one unexpected piece of news. Sally’s Immunoglobulin (IgG) levels are very low. You may be asking yourself, “what the heck is an Immunoglobulin?” That’s OK, we asked ourselves the same question. They’re apparently antibodies that fight off infections. The minimum healthy level that you want is 500, Sally’s are currently a 103. This essentially means her immune system is in rough shape and puts her at high risk for infection, in addition to her being neutropenic. This is likely caused by all of the chemo, having RSV for several weeks, etc.

Doctors want to do what is called a gamma globulin infusion. Yes, another mouthful. A quick Google search turns up that it’s very similar to a blood transfusion that props up the IgG levels. We’re going to do some more research and ask some of the other Infant Leukemia parents if they’ve had similar treatment. It’s also common after bone marrow transplants.

Other than that, we’re celebrating the end of Steroid Week, or Hell Week 1 as we have called this portion of the cycle in the past. Sally was mushy and moody most of the week, with some periods of hyperactivity sprinkled in. Nicole is exhausted, Sally has been very needy both during the day and at night, wanting to feed for comfort. Hopefully with her getting the last dose of steroids this morning and her numbers rebounding, we’ll see more Sunshine peeking out from behind the clouds.  Yesterday we saw our first glimpses of smiles and playfulness, with more of it today. We’ve started calling Sally “Trouble” since when she has energy, she likes to make a mess and play with her tubes. A bit of rebellion in our girl that we’re honestly not sad to see. In fact, she can cause all the trouble she wants.

Trouble is messing up the rug and making a mess.

Please keep Trouble  in your thoughts and prayers.

Matt