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Gold Ribbon Hero Destiny R.

Reason this person is a Gold Ribbon Hero: My beautiful daughter Destiny is my Gold Ribbon Hero. Just 2 short months(nov 15 2013) after her 13th birthday(sept 12) she was diagnosed with MDS/AML leukemia with monosony 7. With one round of chemo she was cancer free but because of the MDS she needed a bone marrow transplant ASAP. Her sibling wasn’t a match so we moved to the donor list. There was only 1 match and it was a cord blood. On Jan 28,2014 Destiny was admitted to Nationwide Children’s hospital 2 hours from home to start harsh chemo to knock out her bone marrow to receive her new cells. On Feb 7,2014 she had her BMT. After 45 days in isolation the drs had decided her transplant failed. There was no more matches…plan B. Take marrow from me (mom) known as a haplo transplant being only half a match for her. She receive a dose of chemo again to knock out any remaining cells and I started a series of 5 cell boasting shots. On April ,2014 she received her second BMT. She was released from the hospital to the RMDH at the end of April at 98% donor. She had clinic once a week. We celebrated her 100 day milestone July 10th. Her T-cells were alittle low so they decided to do DLI (donor lymphocyte infussion). Every 4 weeks she would get a dose of chemo for 7 days on the 8th day she would receive a boast of cells. She did orientation for her freshman year even tho she was not able to start back to school until after Christmas break. On Sept 8th 2014 Destiny had clinic that morning. She awoke with a rash on her legs, arms, back and belly with a slight fever. So off to clinic and like we figured she would be admitted for GVHD. She was giving steroids to help with the GVHD. She let them know she had to be out by her birthday 4 days away. The morning of Sept 10 her nurse was taking her vitals and her blood pressure was low. The called for the special team. Administered a bouls of fluids and sent her to picu were she was intubated. She had became septic. She was extubated on her birthday and under sadation. Not to wake up until the following Monday…missing her birthday! My husband came to the hospital to give me a break. I went home for 2 days. The morning I was to go back I spoke to my husband and he said everything was fine and he’d see me later on that day. 5 mins later he’s telling me I have to get there they don’t think she would make it till noon!?!? Her heart had started a funky rhythm. I got there as soon as possible and she was intubated again but stable. Her dr wanted to do a bma to see if the leukemia had return but she was not stable enough to be able to go through her back so he did it on her knee. No cancer! Her liver numbers were very very high.  At this point the believed she had severe steroid resistant GVHD. To unstable to have a liver biopsy her BMT dr came to us with a study drug that she would receive once a week for 4 weeks if she gave them that long. We started it right away. She was receiving 24 hour dialysis amongst lots of other things. She was still fighting that’s all that mattered!  Things were looking better everyday. Her liver and kidney numbers were still outrageously high. Extubated and intubated yet again, they talked about a trach. On oct 14 the nurses were unable to pick up her o2. Her body temp continued to be low. We expected the worst but hoped for the wonderful miracle we had been praying for. Sadly on the morning of the Oct 16,2014 (also her daddy’s birthday) at 8:09 am Destiny sadly passed onto heaven. You can learn more about Destiny at https://m.facebook.com/allfordestiny” – Melissa R.

 

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