r/pediatriccancer • u/discoveringmebee • Jun 06 '25

2 year old with rhabdo - 6 days of fever

Hi all - just want to share my situation in hopes that there is someone out there who has experienced similar. My 2 year old has embryonal Rhabdomyosarcoma stage 2 and we have completed 9 months out of the 10 1/2 scheduled - woo hoo! He hasn’t experienced too much side effect wise, has some nausea on the every 3rd week when he gets 3 chemo meds (vincristine, Cytoxan, and one that starts with a d i can’t think of right now) and the other weeks just vincristine and no side effects. We’ve had a couple short ED visits for fever and quick antibiotics and fluids and home. In Dec, he had rotavirus and were admitted for 5 days but that’s it. This past week he randomly started running high fever like 103, and 3 days of visits to the ED for fluids and antibiotics and it would still return after 24 hours. The 3rd day they decided to keep us. We are now going into day 6 of fevers with no answers. Have developed some mouth sores but hsv was negative and they think it’s viral. Nasal and throat swabs, daily cbc with diff and blood cultures. Everything negative. No other symptoms not even a runny nose. His anc has consistently been looking great. His wbc rbc hemoglobin and hematocrit are lower than normal. I fully trust his care team here at the hospital however, At this point it’s 1 in the morning, google is the biggest help and worst enemy because it has me thinking that it’s leukemia and also that it’s nothing. Anyone experience unknown fevers and end up getting an answer or any idea what we are facing?

8 Upvotes

100% Upvoted

3 comments sorted by

5

u/rst012345 Jun 06 '25

Completely different tumor, but my daughter 2.5 at he time, fevered for a week with no apparent reason. Once her counts came up, it stopped. Dr's said that sometimes, kids fever when CBC is abnormal

3

u/Legitimate_Sky_8557 Jun 06 '25

My son has a brain tumor. He had fevers and was admitted quite a few times before our doctor took him off of Vincristine. They considered it an allergic reaction. He is now on Vinblastine. He's had less side effects, recently he's been getting fevers again but not as consistent and lower grade than before.

3

u/discoveringmebee Jun 07 '25

Update - infectious disease consultants have been added to our care team and requested additional testing - found out he tested positive for parvovirus. They’re thinking a combination of that, mucositis causing the mouth sores and also being at the 7-11 days after chemo point has caused all of this. His wbc rbc and hemoglobin have still been decreasing and his anc dropped to zero. But at least we have a little more of an answer. No more fever today and planning to only do Tylenol as needed, planning to see him eat and his numbers increase before we can go home. Fingers crossed that we are on the up!