Day +8 and +9 – Rotavirus, Our First Set Back!

All fun and games have to end sometime. Yesterday afternoon we found out that Idan tested positive for the Rotavirus. It was just as we came back from a fun lap around the floor with Idan dressed up as a vampire, walking around flirting and blowing kisses to all the nurses. My joke of course was, “I am count Dracula, I am here to suck your bone marrow!” Very funny, Akiva.

We were very surprised about the news, as Idan has been asymptomatic and did not have diarrhea. Nonetheless, it was very scary to hear, as they changed the rules for our room and put us in contact isolation. This means all the nurses and staff have to gown up and put gloves on before they can enter the room. They want to make sure to contain the virus and not pass along to anyone else on the floor. Sadly, having the Rotavirus means also losing all our privileges. Idan cannot leave the room anymore to walk around and see his fans and practice his walking. Amanda and I cannot use any of the common rooms, so no use of the kitchen in the family room, or even go to the complimentary coffee cart that comes by every afternoon.

We have been fortunate so far that Idan’s virus looks like a mild strain, but it is also possible that they caught it at the very beginning and it is going to get worse as days go by. The main symptoms are diarrhea and generally feeling run-down, but he can also come down with a fever and runny nose. There is no way to know if he got the virus now, or if it is a reactivation of the live virus vaccine he got when he was 4 months old, in which case it was just waiting to come back once he had no immune system left. (As a side note, this reaffirms our decision to go into transplant so soon – if he could reactivate a virus he received by way of a vaccination, then years worth of infections and other viruses would pose an even more significant threat during transplant.)

For now, we can control some of the symptoms with more IVIG and fluid replacement if necessary, but we’ll have to wait until his donor cells start working until he can clear the virus himself. So they gave him an early dose of IVIG to help with some of the virus, but they do not know how much that works. One option if he does start having bad diarrhea is to have him drink a bit of the IVIG as well, it tends to help.

The next two weeks will obviously be harder than the first two with this new development, but the very good news is that Idan has been doing so well and is going into Day 9 free of any infections or side effects from the chemo, so he is more than strong enough to fight this virus until the donor cells start coming in, which should be only about a week or so from today.  In the meantime, if you have any ideas for how to occupy an energetic toddler in a room 24/7 for the next couple weeks, send them along!