Maggie O'Neil, Los Angeles Walk Committee | Aplastic Anemia and MDS International Foundation

Maggie O'Neil, Los Angeles Walk Committee

I became involved in the Hope, Steps & A Cure Walk after my mom passed away from MDS in March 2012.  I was overcome with many emotions (sadness, anger, confusion, shock, etc), and I wanted to channel those into doing something good.  So I "Googled" and found the Hope Steps & A Cure Walk, and the most incredible part was that the walk was to be held the following month (April) in my hometown of Long Beach!  I immediately jumped on board and in that next month Team Pat Reep raised $17,000 for AA&MDSIF!  At the walk, we had more than 50 walkers show up wearing shirts I designed with a favorite French saying of Mom’s on the front and her picture on the back.

Mom had a very short battle with MDS. Dad took mom’s health into his own hands and began calling specialists around the country. My mom’s mother died of leukemia when my mom was 12, so this peaked NIH’s interest.  Mom and Dad flew to Maryland the week of Valentine’s Day to meet with Dr. Young. Dr. Young concluded mom had a rare cross-over disease of MDS and MPS.  We then got in touch with Dr. O’Connell here at USC Norris Cancer Center. I can’t even begin to tell you how smart and kind Dr. O was…she was available via email/text/phone, night and day.  She was great. Despite the  rarity of the disease, Dr. O had seen this before and had treated it.  We developed a plan…Mom would start a kind of chemo, called Dacogen, for the next 4-6 months (daily treatments for one week each month), followed by a bone marrow transplant. It was going to be a tough, nail-biting road, but we were going to get through this. Because of MDS, Mom’s blood platelets had been dangerously low. Mom started weekly platelet transfusions, and after a few, we had to go to twice-weekly because the platelets were not sticking. Turns out mom had strong antibodies and her body started rejecting the transfusions almost immediately.

It’ll be one year on March 13, 2013, and I’m still heartbroken, confused, and sad, but I focus on the wonderful and fun (and mom was fun!) memories we shared during my 26 years with her. I’m also grateful that she got to see her three children grow up and graduate from school, two get married, one have grandchildren, and yet there was so much more for her to be a part of. I am beyond blessed she was there every step of my way planning my dream wedding with me…that was a very important event for both of us (her because she never had that with her own mom). I ask mom every day for strength, mostly strength for my Dad.  My mom and dad would have celebrated 41 years together this spring…they met when they were 16 years old and that was it for them. Every day is a roller coaster, and every day will be different. But one thing is for sure, there is a void in my heart that will never go away. My mom was my best friend. Not a day went by that I didn’t talk to her or see her. Life has changed dramatically since last year, but I am so grateful to my family, friends, and our community for the love and support they have given to me and my family over the last year. I am involved in the Hope Steps and A Cure Walk and the AA&MDS International Foundation to raise awareness and funds to fight this horrible disease.

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