Today we got two positives. I wish two positives were a good thing but when you are talking about viruses, that is not the case. Both of Hana’s adenovirus blood tests came back for positive for high levels of the virus. The way I understand it, and I could be off a bit, her initial blood test came back at 7,000 last Thursday. Then they drew a level this past Wednesday which came back 25,000 and another this past Thursday which came back at 15,000. The cardiology fellow (admittedly not an Infectious Disease Doctor) interpreted this to mean that Hana’s adenovirus got worse after the initial test and first few treatments of the Cidofovir then peaked at 25,000. Now it is on its way down which is why the latest test came back at 15,000. I hope she’s right.
This was disappointing news for us, but it makes sense because Hana’s symptoms seemed to follow the same trend. Today they started IV nutrition for Hana so that she starts to get something as her gut rests. My understanding is that GI will check in Sunday and make recommendations based on her progress. Tomorrow (Sunday) Hana will get another Cidofovir infusion. They also did another dose of IV Magnesium today. All these things started to get to me today as I worried about things tumbling out of control. It would only take one small thing to really push Hana over the edge – another contagious infection or a PICC line infection or who knows what. I think seeing Hana feeling so down and out for so long was getting to me and I wondered if that’s how parents of kids fighting cancer feel.
I was able to get out of the hospital for a bit while Paul stayed with Hana. I was too exhausted to do much or even go for a walk. But I did feel a bit better when I returned and I came back with a toy for Hana. She hasn’t wanted to play with toys for many days – she’s been watching her musical cartoons on the iPad, so I was hesitant to get anything. She’s been picking songs about food. Then she started picking videos of adults playing with toy food (it’s ridiculous, who are these people?). I normally change these videos when they come on but I was desperate so I let her watch them. Besides I wasn’t able to engage her in any of the iPad apps I had downloaded for her. So, the toy I brought back was wooden toy food. She LOVED it! For the rest of the day she would sit up for short spells and play with the toy food and play dough. She would even pretend to eat it and say, “Yummy!” I thought toy food would just make her feel worse since she can’t eat, but I guess not?
Hana seemed to perk up in the afternoon, overall. She even asked to have popsicles. We were tipped off that the Emergency Department had Pedialyte popsicles and yesterday one of the nurses went on a mission to get some for Hana. She only wanted the blue popsicles. Yesterday we found more Pedialyte popsicles at the drug store so I got some and put them in the freezer. Still today she would only touch the bright blue Pedialyte popsicles! She only eats them in very small amounts but at least it’s something. Yesterday Hana didn’t really ask to eat or drink but today she did. It’s so hard to deny her.
While I was out today, the attending cardiologist stopped by and talked with Paul. He said it is not unusual that it is taking so long for Hana to overcome the adenovirus and they usually expect two weeks of Cidofovir treatment. Then the side effect of the adenovirus is the GI problems and that can take a few weeks to resolve (although I don’t anticipate we would have Hana in the hospital the entire time). This all made me feel a little better. It will take more patience and the challenge of figuring out how best to nurture Hana through this.