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Help Requested

June 18, 2009: Day 8

Dear Friends,

On June 10 I had a bone marrow transplant to treat a rare blood cancer called Sezary Syndrome. It seems I have had the cancer since about 1999. It went misdiagnosed both by Harvard, where I just got my PhD in 2005, and by Kaiser Permanente Fresno, where I was coordinating a research project for UC Davis researching farmworker health issues, until 2007 when I started treatment at Stanford. Eight years!!

It falls under cutaneous lymphoma and there are only a handful of centers that treat it. Stanford seemed to have given up on me and were denying me treatments that I knew from reading clinical papers were appropriate for me. Fortunately for me, I got a faculty position at the University of Texas in El Paso and got on their fantastic health plan. I am now being treated at MD Anderson Cancer Center in Houston by the top specialist in cutaneous lymphoma. I love her so much – she is my goddess!! Dr. Madeleine Duvic; please include her in your prayers.

So out of adversity, good fortune.

I have commuted from El Paso to Houston for a year, flying in weekly and flying out the same day for chemotherapy to hold down my job. Then in October, by chance Dr. Duvic found a brain tumor on one of my MRIs. Can’t make this stuff up, really. They said it was only a meningioma but they had to take it out to make sure it wasn’t part of the lymphoma since it looked a little funny on one side. My mom came out to be my caregiver at that time. I was out of commission for about 6 weeks. Luckily one of my classes has been cancelled and I was teaching the other online. I have been able to hold down my job this whole year because of the incredible understanding of my Dean, Robert Anders, and the wonderful technology we have to be able to teach online.

Four weeks after the brain surgery, I started total skin electron beam radiation, at first two days a week then four days a week, so I had to add in hotel stays for the nine weeks of radiation treatment. My entire body peeled twice! I’d recommend it as a cosmetic treatment except it was really bloody painful and I was in a wheelchair for four weeks. Really different perspective, occupying the wheelchair!

But needless to say, saving money with all the travel was out of the question and though I make a good 9-month salary, every extra penny has gone into my medical bills and medical travel.

Now that I have had the bone marrow transplant, I will be in the hospital for another three or four weeks. After that, I have to move to a local apartment here in Houston to be able to have daily doctor appointments and blood transfusions.

Here is where I need your help: In order to be accepted for the transplant, I had to ensure that I would have a 24/7 caregiver to stay with me in the apartment for three months. This caregiver has to be really alert and watch for signs of graft versus host disease and other general complications that could arise, and get me to the hospital immediately or call 911.

My mom, who is 86 but really active, is coming to be my caregiver again. My transplant was almost cancelled because the team of doctors think the caregiving role is too much for her. I will love having her with me but I am afraid of not having the help I need.

I need to have a second caregiver and I have asked two very close friends to come from Brazil. I know I can count on them. One is Ana Freitas, whom I hope will stay on and attend university in information technology and keep me company the first year after transplant in my home in El Paso. The second is her uncle who volunteered to come for August. This way, everyone will get a break from this kind of daunting task, and it might be more fun for all.

So I am asking for your help for caregiver relocation expenses. I need to raise $4000 for their airfare and travel expenses, and $400 a month for July, August and September 2009 for food and sundries while they are acting as caregivers ($1200).

So my total fundraising goal is $5200.

In order to help fund the uninsured cost of this treatment, a fundraising campaign has been established in my honor with the National Transplant Assistance Fund (NTAF). NTAF is a non-profit organization that has been assisting the transplant community with fundraising for over 25 years. I hope you will please consider making a tax deductible donation to my campaign today; even the smallest amounts are really important and add up quickly.

Make checks payable to: NTAF South-Central Stem Cell Transplant Fund

Note in memo section: In honor of Kathleen O’Connor

Please mail to: NTAF

150 N. Radnor Chester Road – Suite F120

Radnor, PA 19087

For credit card contributions, please call 800-642-8399 or visit http://www.transplantfund.org and enter (O’Connor) in the yellow patient box on the left side of the homepage. Or use the National Transplant Assistance Fund button on the home page of this site.

Thanks and with all my love,

Kathy

Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by the National Transplant Assistance Fund, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800-642-8399.

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