Monthly Chemo and H1N1 update

Today was Emily's monthly IV treatment in the day hospital and an exam in the oncology clinic. Since she is known to have H1N1 when we get to the hospital we have to check in and then wait outside for a nurse to come clear her for entry and then escort her to an isolation room. The same protocol is followed for weekly lab draws. We had to wait about an hour and a half for some reason in the exam room. We pass the time with Iphones, laptops, and a lot of good humor and sometimes not so good humor. Sometimes when we wait Emily becomes "Dr. Emily" and pretends to give us exams. It's fun to play, but you also learn a lot of how Emily views her care and her disease. We almost never complain to the staff about having to wait, we know that they are probably busy with kids who are much more sick than Emily, and we remember those days all too well.

Dr Link, or NP Karolina, and a student NP all gave Emily an exam. Dr. Link has to really exam her lymph nodes in her throat area and it hurts Emily, he does it so hard that today he left red marks that remained for an hour or so. Her exam itself went great, there were no concerns and we again we assured her CT looked great. Then it was time to discuss H1N1. They told Emily that they were going to swab her to see if she still has the virus. Then they told us something that we were not expecting. Apparently Emily has a mutated form of H1N1, that Stanford Infectious Disease (ID) has only seen in Emily and one other patient. Since there are laws to protect that other patients privacy I don't know anything else other than just Emily and patient X have had this. They jokingly said that Emily was "famous in the ID dept." Dr. Link then ordered a chest x-ray. He said he wasn't too worried because Emily is not symptomatic but also wants to get her virus free. So to sum it up, the last time she was tested she tested positive, which we all knew about, but we didn't realize that it was a mutated form. The other patient that had this was ultimately cured with a higher dose of Tamiflu, so we expect that if Emily is still virus positive she will be put on an increased dose of Tamiflu, and we just hope she remains symptom free. She is NOT especially contagious, so don't worry. She does not have a fever, a cough, or really any symptoms of the virus and she is clear to be at school. They treat her with extra care in the Oncology area because there are kids there with absolutely zero ability to fight anything, the kids waiting for bone marrow transplants for example. Overall we aren't terribly concerned about this, but at the same time it's a bit unsettling to think she has a form of the virus they have only seen once before. We should get the results of the swab in the morning.

After the exam we had the x-ray in radiology. She moved during one of them so we had a re-do. Then from radiology she was escorted to the day hospital on one north for her IV treatment. She turned on "Sponge Bob the Movie" and tuned out. I don't think she even realized the IV needle went in. She was watching the movie, and because we were so delayed the Sinera patch had her hand completely numb. The IV insertion and lab draws went very great, and then she got her IV medication and were done. All in all we were at the hospital for 5 hours today.

This evening Karolina called us with her cbc results. The important part was her anc was 3200 so she can increase her chemo done up to %75. Her chest x-ray was clear too.