It’s been awhile since we’ve posted anything, mostly because it’s been an intense past week. The good news is, Anna is officially engrafted! Her ANC (absolute neutrophil count) stayed above 500 for three days in a row and has consistently stayed in the 700-900 range. This means her donor cells are reproducing in her body and starting to grow – exactly what we want.
Unfortunately, this also means she’s been feeling sicker than ever. Her belly hurts, she has had several fevers, she throws up a lot and just generally doesn’t feel well. She’s been lucky in that she hasn’t had too many painful mouth sores, but the mucositis affects her entire intestinal tract – and that hurts, causes vomiting and diarrhea, no fun for anyone. A recent ultrasound of her belly showed her gall bladder is inflamed, which could explain part of the pain, and her medical team is watching for signs of infection. She’s had two blood transfusions and 3-4 platelet transfusions. She’s being treated with countless pain meds, antibiotics, nutrients/feeds, hydration, anti-rejection meds, antivirals, meds to help her liver, Benadryl, diuretics… the list is seemingly endless. Now that she’s engrafted, we’re watching for signs of graft versus host disease (GVHD), which is somewhat common but can range from acute to chronic.
This is the toughest part for me, seeing her so uncomfortable and moody. I certainly can’t blame her, she’s been staring at the same four walls for a month! Still, I’m amazed she has come this far with so much positivity. She had so many good days post-transplant, I was starting to question if the whole process was doing anything at all! Not anymore. She definitely has bright spots most days, but I can tell she is just OVER it. She’s never alone, she can’t leave her room, the nurses are WONDERFUL but they constantly come in to check on her, give meds, do vitals, etc. Legos, arts and crafts, Wii, and board games help pass the time but even those activities are starting to lose their shine. She is ramping up with school, however, and loves spending time with the PCH teacher, Michael Borum.
Her hair is pretty much gone at this point, but a highlight for her was shaving Tim’s head! Thanks to everyone who has shown their support with #pinkhairforanna – the whole family participated, even Margaret and Tim! Our Tempe Village family has been incredibly supportive and helpful, there was even a #pinkhairforanna party for everyone to get a pink streak. Anna’s 2nd grade teacher at Manitas, Alison Johansson, even added some pink, as well as many of the teachers and staff at Bridges Preschool & Kindergarten.
We live pretty much day to day, and each one has its one trials, challenges, smiles and small graces. As Tim will attest, the past few nights have been rough. She isn’t feeling good and snaps at the nurses and us. Sometimes she is downright mean and that is extraordinarily hard as a parent. And even though we know better, it’s easy to start wondering if this new persona is here to stay.
But then there are mornings like today, when the early sun is shining through the window to light up her face. She turns to me, opens her eyes – clear and pale blue like mine, and dark lashes for miles that thankfully have not yet fallen out – and simply says, “Mama, I love you,” and grabs my hand. And I know my girl is in there, and has never been more beautiful — inside and out.
-Melissa