One Sick Little Girl

Hi Everyone, Day 27 in hospital now. We’re all hanging in there.

Ellie is not really well, even in terms of AML. Paul and I were talking about it last night and it seems like she’s the sickest child on the ward, that we can see at least. She’s covered neck to toes in a horrid rash which we think was a reaction to an antibiotic, pipericillin tazosin, and because she has no platelets (well, they’re consistently around 7-11 and should be above 80) the rash appears mottled and purple and causes the blood to pool in her pressure points. She has the highest temperatures that will NOT stay away. Spiking as quickly as every 2 hours, and up to 104 F/40.2 C. This then causes rebound nausea that has been increasing over the last 24-48 hours. Her blood pressure and heart rate are going up, which could be due to pain, but is of concern. Ellie had a CT of the chest, abdomen and pelvis  and an ultrasound of the kidneys to determine if there is a source of infection somewhere that we/they are overlooking, but, thank God, everything keeps coming up clear. Blood cultures are being done almost every day and she has been tested for a battery of the common viruses and again, negative. So maybe it’s just the side effect of the big gun chemotherapeutic agent gemtuzamab. We don’t know.

A nurse we had never met before came on last night and she called for a review because she thought Ellie was so sick (and HR up to 140’s) and I said to her, "um, this is how she is every day" 😢. She was so surprised. We’re 3rd morning post stopping the pip tazosin antibiotic and thinking the rash has plateaued. She was on Cefapine for two days and now back on Mirapentin and now also adding in vancomycin which should give some coverage in case a skin infection is brewing. She’s still reluctant to communicate and is angry at me half the time but of course I tell her I love her no matter what and i won't be going anywhere! It’s a running joke on the ward of what nurse can crack little Ellie Carter and get her to either: smile at you, or talk to you, and gold star for the latter 😉

Her hair is  starting to fall out now, which I'm realising is more confronting for the parents than for the kids. And, Ellie is proving to be no different and is pretty much taking it in stride. When we combed out a huge pile of hair she looked at me and said "I'd like you to take a picture of the back of my hair, the front and the top so that I can see it Mommy." Bless her!

On a high note, she has been taking her oral meds and is been pretty good with her 3 step mouth care! This is a big accomplishment and she is filling up her sticker chart quickly and will apparently earn a jumbo Lego Friends set. The amount of toys the children get here in hospital would blow your mind. I'll make sure to take a picture of her loot!  I’ll also post some pictures of the hair and rash, which might be confronting, but it will let you know what we’re talking about. Love to you all.

KC