March 26, 2015

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Delayed Intensification Day 52: Celebrate Where You Can

Good news or bad news? I guess I always like to get the bad news out of the way first…

Scarlett is still having fevers at least once per day. They are most often at about 8:00 at night. Personally, I think it is just her body’s natural rhythm. She gets warm at night. We know because we sleep next to her and she wakes up in a puddle of sweat. So I haven’t been freaking out about these bedtime fevers. Today, however, she spiked a fever at noon. Ugh! One step back…

She is on day 9 of her antibiotics to treat her mouth sores. The sores healed on their own. Her blood cultures only tested positive once before responding very well to the antibiotics. She will remain on that antibiotic for a total of 10 days, which will end tomorrow night. One step forward…

Her C. diff cultures continue to come back negative but she shows all the signs of an infection. Her bloating has gone down and she is stooling a lot less. But her poor little bottom is red and hot from being exposed. She will remain on two more IV antibiotics/antifungals for at least another week. Last night she started a horrible cough and probably has croup. They won’t test because they don’t want to risk introducing any new bacteria into her nose or causing bleeding. Either way, her treatment will be the same. One step back…

Scarlett started eating. Tuesday night she ate a bite of turkey. Yesterday she ate 10 blueberries. And today she ate more blueberries, a couple Cheerios, a bite of turkey, a couple grapes and a bite of cheese. Her doctors have increased her TPN to 75% of her daily requirements. They said that if she still isn’t eating, we could take her home on the TPN (food through her IV). One step forward…

But her labs are improving! Her Hgb actually increased from 8.3 to 8.9. Her platelets decreased but only from 76 to 29. And her white blood cells doubled from 0.1 to 0.2! These are all promising signs that she may be recovering! She has been complaining of leg pain which could be her bone marrow kicking in and her fevers may also be attributed recovery. That is a huge step forward!

And the biggest news of the day? Today was Scarlett’s last dose of chemo before maintenance! I am so excited! I have been looking forward to this day for a long time. It wasn’t quite as special as I had planned. We ordered three dozen “princess” cookies to celebrate with the clinic and hospital staff. Unfortunately, Scarlett couldn’t go to clinic. And the hospital staff was pretty slim today (which is good for everyone else). But we passed out cookies to everyone we saw. Even though it was just another day on the Peds floor, we tried to make it as special as possible. She didn’t even notice she was getting chemo because she already has so many tubies hooked up, but we are going to take every celebration we can get! That is a giant leap forward!

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