The number one question I get asked so far is about how we figured out Jordyn had leukemia. I really don't love telling the story, since it really isn't a happy one, and it involves my little girl, but it is one that I will tell because it has pretty much changed our lives in a huge way and now leukemia treatment and infection prevention is a big part of everything we do. I am also just going to throw in random pictures from when she was in the hospital to make it more interesting.
Jordyn had been sick on a Wednesday June 6th with a stomach bug. She always has a hard time recovering from stomach bugs because she had already been diagnosed with ketotic hypoglycemia, and so when she go for long periods (over 4 or 5 hours without food) her sugars sometimes drop and then she gets other problems on top of being sick with a stomach bug. Anyway... She was having a hard time recovering, and on Thursday and Friday she had a low fever as well as fatigue since she wasn't eating well still. On Saturday, she seemed fine, still a little sluggish, but seemed to be doing better. On Sunday the 10th, she seemed miserable when she woke up. She was extremely tired, and she had a high fever. I had been feeling anxious about her, and so I took her to a kids care. They thought it might be strep throat, but the rapid test came back negative. They drew some blood, and started her on iv hydration as well as some iv antibiotics because they still thought it might be strep. By the time the hydration was done, the blood counts were back, and they were all very low. They told us we needed to take her to primary childrens emergency room, and they would let us take our car if we promised not to make any stops on the way.
We waited awhile and the er decided they wanted to run another blood count in case the one that had already been done was wrong. They did a ct scan on her neck since she said it was really hurting, and they were a little worried it might be meningitis. We got to the er around 3 and they decided to admit her by around 7. By 9 or so, her room was ready. It took a while to get a room ready since she was put in the immuno compromised unit and they have additional precautions in place there. All the nurses and people who came to see Jordyn had to wear masks and gowns to protect her and their other patients.
We had oncology specialists visit us. They told us her blood cells were oddly shaped, and that could mean two things. It could mean she had a more severe viral infection that was weakening her, or there was a possibility it may be leukemia.
They were very hopeful that it was just an infection and they did cultures for infections both viral and bacterial. They came back that she didn't have any bacterial infections, but they were still leaning towards a viral infection that just got more severe. Some of the viral test would take a couple days to come back. On Monday, they did a bone marrow aspirate to test for leukemia as well. They were hopeful to get the results back that evening, but it didn't get to the lab soon enough and we had to wait for morning.
I think it was around 11:30 or so on Tuesday the 12th that the oncologist finally came to talk to us. He told us it was odd how her tests came back. It showed that she had mono and cmv as well as rhino virus. He then told us that he was 100% sure that Jordyn also had leukemia. She was then scheduled for a lumbar puncture, also know as a spinal tap to see if the leukemia had spread to her spinal fluid and they put some chemo in her spine while they were in there.
She would also have her picc line put in to reduce her risk of infection from being poked all the time. I think it was Wednesday that they officially began her chemo treatment. They let us come home on Saturday evening, but we had to agree to do iv antibiotics at home.