Round Three Almost Over

2/24/07 Day 45

We are almost at the end of round three, Ann is on her last bag of chemo (a 24 hour drip) and we are scheduled to take her home sometime tomorrow afternoon. This round of chemo is the same set of drugs that Ann got on the very first night that she arrived at MDA. However the effect they are having on her is much more pronounced than the first time.

Ann's theory is that when she came into the hospital the 1st time she was already hyper-leukemic, and felt horrible. So any treatment was going to make her feel better. However since she has already had some chemo and was feeling "better" the reintroduction of the chemo drugs have just made her feel bad again which should clear up as the chemo leaves her system.

The main thing that is troubling her with this round of chemo is the nausea. It comes over her like clock work at around 9:00 pm and stays with her until the nursing staff gives her something for it through her IV or she throws up, which ever comes 1st. Usually the IV drugs have to be already hooked up and going into her an hour or two before she feels the first on set or are useless.

The last drug they are giving her today is Doxorubicin and it is used to damage the process of DNA replication when cells divide. It has a strange red color that makes it look exactly like brake fluid. It's side effects can include nausea, vomiting, heart arrhymeas, congestive heart failure and later in life cardiomyopathy. Lovely. Still in the log run it's preferable to cancer. Doxorubicin is currently being used experimentally to treat AIDS patients because it seems to have the same DNA damaging effect on HIV infected cells as it does on leukemia cells.

For those of you who are interested I have included a shot of Ann's IV tree and pumps. The Doxorubicin is the red stuff on the right. The other bags are saline, or anti-nausea, drugs. When she goes in to the hospital this is typically the number of bags that are hooked up to her and she has to be very careful moving around because they are all attached to the small CVC in her chest. That's only held in place by three stitches and could be pulled out pretty easily if she fell or rolled over in her sleep.

We are still waiting to here more news about the transplant. At this point I belive that MDA is most likely going to conclude the Adult Donor search and begin to focus on Cord Blood based on the risk of Ann's leukemia. I asked one of the Doctors and he said he believed that they might do the opposite, and continue the Hyper CVAD treatments until they are finished and then go to a transplant. That way they have 5 more months to search for a donor.

I have also contacted the AADP and A3M organizations in California and given them Ann's Uncle Loi's number so they can coordinate with Ann's family to help register more Asian marrow donors. The chances that they will find a donor for Ann is small but they might help someone else who is just as sick. Ann's friend Tina mentioned that there might be similar organizations in NYC and we might be able to reach out to them too.

Considering the expense of MDA and the Donor search, 5 more months could eat up all of our insurance. So I am starting to take steps now to try to avoid us having to make treatment decisions based on what we can and can't afford. The first is I applied of Louisiana Medicaid (more on this later), the second is I asked out existing insurance company to extend out coverage cap in exchange for a higher premium (no word on that yet, but I'm not holding my breath) and finally I have begun to look into non-profit fund raising.

Dealing with Louisiana Medicaid is infuriating! They actually told me that because we elected to come to MDA that they would not help us, because MDA is Texas not Louisiana. She also suggested that if I was in financial trouble that I could take Ann to Earl K. Long (Charity Hospital in Baton Rouge) and let them do the chemo and BMT! Earl Long has no record of treating leukemia or doing BMTs...incredible. The sad thing was that the woman I was speaking to was dead serious about us going there. I have never been ashamed to be a resident of Louisiana until now, and I can honestly say that me and Ann will have to think long and hard about be going back when this is all over.

I hope to have a web cam for Ann's laptop so that when she goes into the hospital for the next round, in about 2 weeks, then everyone can log in and talk to her on the Internet.