Down Time

Day 51

Hello everybody...this is a difficult day for me because Ann has no appointments at MDA. As fans of our little blog will know that days like today drive me nuts. I usually "cope" by taking inventory of the things we need and planning small trips to pick them up. Today however I occupied my time by contacting MDA, the Louisiana HIPPA plan and our insurance company (in that order).

The MDA call was to see if I could get Ann enrolled in a Physical Therapy class of some kind to try to help build up some muscle mass on her before the BMT. Unfortunately, and I didn't know this, MDA has been evaluating Ann all along for just such a thing. They told me that when they felt like Ann "needed" it then she would be placed in under the care of a Physical Therapist.

Next was the LA HIPPA plan. Having "mixed" results, to put it kindly with LA Medicaid, I thought that if worse came to worse then we could get Ann supplementary insurance with Louisiana's High Risk Health plan. The good news is "yes" they will cover Ann immediately if our primary insurance failed. The "bad" news is that its expensive and "worse" is that the HIPPA plan has a $500,000 lifetime cap and a $100,000 yearly cap. So we would hit the yearly HIPPA cap with a single months billing from MDA. Yikes!

Still it might be an option after the BMT. We don't have anyway of predicting the medical expenses that we will be incurring in the first few months Ann is out of the hospital. From the blogs of some other BMT patients that we have read it looks like we can plan on constant lab work, transfusions and bone marrow aspirations to check for relapses. I'm not sure if there is any "maintenance" chemotherapy after a BMT but I'm sure it is a possibility too.

As a last line of defense I have decided that we will have to pursue some fund raising through a 501c3 organization. There are several like the National Foundation for Transplants and the National Transplant Fund but they have some different requirements on how funds are raised. As I understand it the 501c3 organizations are non-profit and tax deductible. The funds that we raise through them would be part of a general fund but be "ear-marked" for Ann which she could use for only medical expenses.

The last call was to the Insurance Company to ask them about the status of the Cord Blood funds. If you remember from two days ago, we had met with the Transplant Doctor and she told us that MDA had located two units of cord blood and where waiting to get the funds from the insurance company to purchase them.

My question to the Insurance Company was very basic "Will you pay for the cord blood transplant? Or do you consider it a experimental procedure"? Our anxiety over this, apart from the obvious one of Ann wanting to keep living, is related to the insurance company's previous reaction to an "experimental" drug that the Doctor wanted to use in the BMT when the plan was to use an adult donor.

After several conversations and explaining the situation to three or four people, I still don't know the answer to that question. The closest I got was "our Doctor's will have to review your Wife's case and they will make a decision on the necessity of the procedure". So a Doctor that has never seen my wife and who we don't know the qualifications of, NOT the transplant Doctor who works at the #2 cancer center in the US and says the procedure is absolutely critical, and has examined my Wife 1st hand, is going to get the say so on if the purchase of the cord blood units. Nice huh?

It's hard being diplomatic with people sometimes but so far I think I have done a fair job. I was promised that Monday we will know what the insurance company is going to do. I promise we will keep everyone posted.

Ann is doing well today. Her nausea is minimal but she is having some progressive heartburn which she says is very uncomfortable. Added on top of it she said that the "tang" taste that she experienced in the 1st round of chemo has started to creep back in. I picked up some more of the prevention mouthwash that my Sister sent to us, that seemed to help last time.

She says that the Vincristine that she got yesterday is starting to kick in and she is beginning to get very run down tonight. In addition her platelet counts must be getting low because her hands and arms are beginning to bruise. I freaked me out the 1st time I saw it but apparently it is just one of those things that happens under heavy chemotherapy.

Ann has promised to either post tomorrow or do a video, but that's all for tonight.