Tuesday, March 27, 2012

My Mommy, My Angel

I’ve been thinking about what I would write today, and I still can’t figure out how or what exactly to type.

Two weeks ago I lost my best friend, my mentor, my confidant, my inspiration…I lost my Mommy.

Around Christmas, Mom started to not feel well.  We discovered she had some kind of blood disorder but the doctors couldn’t figure out what.  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 in Maryland.  Mom and Dad flew to Maryland the week of Valentine’s day  to meet with the renowned hematologist, Dr. Young.  Dr. Young concluded mom had an incredibly rare cross-over disease, which is two different blood and bone marrow diseases, but would need more tests to determine specifically what they were.  We then got in touch with the amazing 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.  After three months of tests and platelet transfusions, we discovered what Mom’s rare cross-over disease was…she was diagnosed on March 9th with Myelodysplatic Syndrome (MDS-an incredibly rare kind of blood cancer affecting 0.003% of the country) and Myeloprolific Syndrome (MPS-a form of bone marrow cancer).  Despite the incredible rarity of each disease, let alone the combo, 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, something we discovered in February at NIH.  Mom started weekly platelet transfusions, and after a few, we had to go to twice-weekly because the platelets were unusually not sticking.  Turns out mom had strong antibodies and her body started rejecting the transfusions sooner than usual (usually one can have 20 or so transfusions before the body rejects…Mom had 6).

On March 10, the day after her official diagnosis, Mom wasn’t feeling well and Dad took her to the hospital for another transfusion.  She was admitted to be safe.  Dad stayed the night with her and on Sunday my husband, my brother and I came and spent all day with her.  We talked, we laughed, we watched the Lakers game, we talked a little about our Europe 2013 trip.  Mom was going to kick this thing’s ass…she was determined, and if you know Mom, you know how strong she was.  Dad stayed with her again Sunday night, and I came first thing Monday.  My aunt and cousin came by to say hi and again we laughed and had a good time.  I told Dad I’d stay with Mom Monday night because he needed sleep desperately.  So Dad left late afternoon to get some rest.  Despite her very low platelets, Mom had her first Dacogen treatment Monday night and that went well.  My bro left around 11pm and I stayed with mom.  Around midnight, she woke up and her headache wasn’t going away.  After her pain meds weren’t helping, I ordered a CT.  At 2am we got the CT results, I called Dad and Sam (my younger bro) who came, and we moved Mom to ICU.  She was stable, totally coherent, but in pain from her headache.  We finally managed the pain, and she was able to sleep.  By 8am, the whole extended family was in the waiting room.  My big brother was supposed to fly out from his home in TN that evening, but we immediately got him on the next flight out.  He was due to arrive around 4pm, which we thought would be plenty of time for him to see Mom if things worsened.  Around noon, her breathing slowed along with her heart rate.  Dad, my younger bro and I, held her hands, and told her how much we loved her.  Not that this was unusual for us…we always told each other how much we loved one another every single day, and that is so important.  In that moment, Mom became our Angel.

I can’t even begin to explain how I’m feeling.  I’m devastated and heartbroken; I’m angry that my mom, the most selfless, giving, warm-hearted, loving woman, was taken at such a young age; I’m beyond sad, and just when I think I’m all dried up and can’t cry anymore, more tears come.  I’m numb and in shock.  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 moment 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 40 years together this spring…they are 56…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 is going to be very different.

I can’t even begin to thank all our family, friends, the community, for all your love and support you’ve shown me and my family during this dark and difficult time.

Mom, I love you forever and always.  You were the best mom a daughter could ask for <3
Me and Mom at my bridal shower
September 2011



7 comments:

  1. I met your mom briefly the day we were making your tutu. She was so kind and welcoming. You do have an amazing guaradian angel watching over you now. Many prayers to you, and your family. You dad is a very lucky man to have you and your brothers for support.
    If you ever need to go for a run to clear you head and chat, please call me.

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  2. I'm so sorry, Maggie! I cried reading this. Your mom sounds so wonderful.

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  3. Tears with you Mags. Beautifully written, you have such an amazing heart. I hadn't heard the details, so grateful that she was peaceful and surrounded by the love of her family. You've got two kick ass women for guardian angels!

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  4. I'm so sorry for your loss! Sending lots of hugs your way!

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  5. Awesome story Maggie! Sending lots of virtual hugs from Ohio! xo

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  6. I know I sent you a fb message Maggie, but reading this I couldn't help but be transported back to last November when my mom passed away as well. I realize they're two completely different situations, but I can't help but see similarities. With my mom it was so quick as well, and when she was first admitted to ICU it seemed almost ridiculous because she was awake and talking and seemed to be doing fine.

    And as awfully as it sounds, part of me is a little jealous that the all happened just after your wedding. Instead with my situation where our wedding isn't till November, and it sucks not having her here, especially when she was so excited and wanted to do so much.

    I know nothing I can say can really fix things, but I just wanted to say that I've been thinking about you ever since I heard. I guess now I can't help but feel for anyone else who loses their mom unexpectedly.

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  7. Maggie - Thank you for sharing this with us, I feel priveleged to have had such a special friend as your mother, she will never be forgotten!
    hugs
    Kathy

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