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Chronic Myelogenous Leukemia Disabled Mom Seeks Government Grant Help

by Mayra Elliott
(Linden, NC, USA)

I was born January 19, 1985. My family and I are from Puerto Rico. We moved to Florida when I was four.

I grew up in Orlando, FL with my older brother and my parents. I was lucky to always have someone looking out for me. I went to the University of Central Florida but never finished my degree.

At age 23, I was blessed to have given birth to my son. Afterwards, I met a great guy and we got married on February 7, 2011. Together our family has his four kids and my son.

We have three girls which are 13, 11, and 6 and our two boys that are both 4 and were born the same day. We live in North Carolina now by Fayetteville.

I have Chronic Myelogenous Leukemia (CML), which is a cancer of the white blood cells. This medical condition causes me to bruise and get injured easily compared to a healthy person. It also causes me to constantly get hematomas throughout my body.

I was diagnosed back in January 2012 before my birthday when I went to the hospital for an increasing hematoma on my left side near my stomach.

When I first went to the hospital, I felt pain and the hematoma that had formed. The bruising and the swelling were the size of a quarter. By later on that night the swelling was the size of a golf ball and the bruising had spread all through my side.

For some reason, I was bleeding internally without hitting anything to cause it to start. After some tests were done they noticed my white blood cell count was way off.

Afterwards they did a bone marrow biopsy and the tests came back positive for Chronic Myelogenous Leukemia. It has spread all through my bone marrow. At the moment there about 60,000 cancer cells in my bone marrow.

They have prescribed me Tasigna which is an oral chemotherapy pill that I have to take twice a day. The chemotherapy has had different effects on my body.

I have broken out in a rash which doesn't really go away on my arms and legs. I sometimes do get nauseous and really tired because of it. My hair has thinned out a lot and my appetite has gotten less.

The doctors say even though there are side effects to the drug it does seem to be working, slowly, but working. I have been granted disability by the government.

Unfortunately with everything happening, my family and I have been going through many problems financially. Unfortunately my husband was laid off shortly after I was diagnosed with my cancer. He has been looking for work but it hasn't been easy for him to find one.

It has been really hard and stressful because it just seems like everything bad is happening all at once. All of our bills are at least two months behind.

My car has to have work done to it because the transmission has gone bad and the tires are so cracked and bald that they constantly leak and need to be replaced urgently.

Our house also has a lot of problems as well. Our roof just recently started leaking, the foundation on one side is severely damaged, the plumbing in the house needs to be replaced and water leaks are causing our water bill to be really high.

Our stove and dryer have given out on us and we have been having to use a microwave or walking to our neighbors house to cook, which can be an inconvenience at most times.

My chemotherapy pills are very expensive and for the moment I'm part of the financial assistance program with Tasigna, but unfortunately that will expire at the end of September 2012.

After it expires I will have to pay out of pocket. I am not able to work because of my medical condition and how easily I can get hurt.

The little bit of money that we do have usually just goes to trying to catch up on our bills.

Fortunately I was granted disability but it isn't much to support our family. I receive $615 a month and then get $125 from my son's father for child support.

I've tried to go through my community and get help from some organizations but they all usually tell me that their funds have been exhausted.

I have also been able to get $430 in food stamps for my family but it really isn't enough.

I am looking for to get a grant and/or SSI. If I were to be given extra money above what I receive monthly it would help out greatly, especially getting our bills back on track.

It would also be a great help for me to be able to keep receiving my chemotherapy pills, so I can keep my cancer under control.

It would also help with our living and transportation problems. Living with cancer is already hard enough to handle and the extra help would seriously be appreciated and welcomed.

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Sep 10, 2012
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My Son has CML
by: Anonymous

My son has CML, so I understand the disease process. I'm sorry that you are suffering as well. Have you considered switching to another TKI? My son is still on Gleevec with minimal side effects.

I've fought the urge to turn to SSI. My son takes Motrin for pain and is successful with that.

I believe it's different for adults however. If you have health insurance, I would urge you to seek therapy.

CML is fast becoming a manageable disease. My son participates in H.S. Sports and a full class load. He does miss an occasional day or two from school, however.

I've found that the more he lives a productive and active life, the less he needs medicine or help. You can't wallow in your CML - it isn't going away. You must must fight fight fight it every single day for the rest of your life!! And with the way the TKIs are working, it may be a long time.

I wish you the very best. I hope you can pick up and start fighting back!!! You're really the only person who can do it - AND I KNOW YOU CAN DO IT!!!

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