07/22/2026
On Sunday morning Eliana was having some tummy troubles that were pretty bad, and her tummy was SO distended. I put her down for her nap, and my girl that usually runs around 97.3 was 105.1 when I got her up, and her rash was ANGRY and you couldn't touch her arms without her crying in pain. This girl normally has a high pain threshold. So it was off to the hospital for some bloodwork, and just in case she went south (because I know all too well how fast that can happen with her when something is wrong).
After a few hours at the hospital, the temp resolved, then dipped so I had to put her coat on (normal for Eliana). She was feeling FINE, vitals were good, and she was evading me in fun and charming all at the nurses station. By then it was 845 (way past bedtime for her, and because of her med schedule, sleeping in can't happen), so I signed her out AMA and went home, checking to make sure that if there were anything that showed on her labs when they finally came back that someone would call me. I know my girl, I know when she is fine, and when she is not. I also know her disease and all that comes with her treatment. Maybe more than our local doctors do, because the disease and treatment are so very rare that none of them have likely ever seen this before. Anyway, all this to say that I did not recklessly leave; I knew she was fine, and that if that changed that I could have her back there in 20 minutes or less. The ER resident doc that phoned later did not appreciate any of this, and I understand why. Lets just leave it at that...
When we got home that night, Eliana was in FINE form, teasing her older sister, and chasing the dogs around having fun. She went to bed and slept all night with no issues, and we have not seen any fever since. Her rash was better the next day, and nearly gone today.
So some research on all this that I did late into the night the first night shows me that she more than likely has developed 'Sweet Syndrome'. From all that I have been able to find out, it is rare, but when it occurs it is not uncommonly associated with the BRAF inhibitors (the cancer meds that Eliana is on) as a rare side effect. It is usually easily treated with steroids when it flares up, but if left can cause swelling in internal organs, infection etc, any of which could be dangerous for Eliana. I had calls with Oncology the day after the hospital, and a meeting with them today. They did an urgent referral to Dermatology, as a biopsy will be needed to diagnose this formally. I'm not sure how that works....you can't schedule a biopsy for something that comes and goes....so we'll see how that works out. In the least, I should have prednisone on hand for when it flares like it did on Sunday. Our appointment is in 3 weeks or so, when we are at BCCH for Eliana's quarterly scans and other tests.
Today Eliana had her first assessment of her deforming big toes that started a couple months ago. Because of her genetic 2Q13 microdeletion, the middle bone in her big toes is really short. This, together with how she has to walk because of the balance issues (thank you tumors) and her weight (also, thank you tumors), means that she is using the ends of her big toes heavily for balance, and it is curving them upwards, to the point that her toe nails are now bent in half. Thankfully, it was assessed as not being a nerve or tendon issue. To prevent long-term deformation, I have to do exercises now every day with her to make sure that the tendons in the top of her feet don't shorten as a result. There is nothing that can be done about the nails, but I have to be extremely careful that she doesn't get dirt in them as they will now be at even higher risk for infection, which already was high because of the medications she's on.
So its been an interesting few days....never boring on this roller coaster that life has put us on.
