5/10/17

I have thought about this blog a lot over the last 4 years, but to be honest I have avoided revisiting it. I always thought I would print it out one day and have it bound as a tangible record that Tessa can revisit when all of these memories have faded to sepia toned shadows in the recesses of our minds. I never thought I would be writing another entry. No, that's not accurate. I refused to acknowledge that that could be a possibility.

But here we are. Lucille Packard Children's Hospital. A place all too familiar to us. But let me catch you up.

At the beginning of April Tessa started complaining of left knee pain. For those of you who have been with us since the beginning, you will know the fear that must have struck in our hearts (It was June 28, 2012 that Tessa shared her left knee was hurting, she very quickly stopped walking on it, and within the week we were at LPCH listening to doctors toss around words like leukemia and myelodysplastic syndrome). It was about 2 weeks ago that her discomfort took us to the doctor. An X-ray and MRI came back normal, and her blood work didn't show anything majorly significant. But Tessa was tottering around on crutches by this point, and consistently complaining about pain. So Stanford said it was time to see her.

We went in to see Tessa's new oncologist, Dr. Krysta, we are very sad to say, has moved on. Up until this point I had convinced myself that she was fine. After all, what could possibly be wrong if all those tests came back normal(ish)? But my heart has been lodged in my throat since the moment Dr. Catherine said it was completely possible to have a normal CBC, and still have something going on in your bone marrow. And then it happened again. I still have the words myelodysplastic syndrome, myeloproliferative disorder, and leukemia ringing in my ears. That is what they will be looking for when Tessa gets a bone marrow aspiration tomorrow morning.

If you are unfamiliar with this procedure, let me explain it in layman terms. Tessa will be sedated and hooked up to an IV. While she is out the doctors will roll her onto her side. They will use a very large needle to force their way into her hip bones in her lower back (think lower back dimple some people have). They will extract bone marrow, and then repeat the procedure on the other side.

I remember in agonizing detail the first time she had this done. It was her 3rd birthday, and she was terrified. I held my lips to her forehead and sang Twinkle, Twinkle Little Star as she breathed in the gas. Walking away from that small, limp, helpless girl is still on the list of top five hardest things I've ever done. It was the first time I fell apart, walking down that sterile hallway with Casey's arms around me.

We've lost track of just how many of these aspirations she has had. Eight?

It is an eerie and sickening sense of deja bu that grips us now. I pray for strength for my daughter, and good news that will release us from this fear.