Hunter Mary’s Story by her Mom Carrie

Hunter Mary’s Story by her Mom Carrie

Hunter Mary 3 On July 1st 2005, I got my daughter ready and sent her to her summer day camp at the Boys and Girls Club. I brushed and braided her hair and packed her bag with her swimsuit and dropped her off. A few hours later, the club called me and said Hunter was sick and had a lump in her neck. When I went to pick her up, I almost fainted. My daughter had a softball size mass growing out of her neck. There was a medistinal mass in my daughter so big it pushed her heart over and popped out of her lymph node. It was the scariest moment of my life..or so I thought.  My daughter’s chest mass was the largest the hospital had ever seen. We almost lost her in ICU as they tried to intubate her for an aspiration and couldnt get the tube out due to the swelling in her throat. The aspiration confirmed she had TCELL HIGH RISK ALL.

Hunter did treatment and responded very well. After a long two and a half years, we were finally all done. She was in remission – I was so happy, exhausted and terrified it would come back. She had lost the ability to walk due to muscle wasting and vincristine. She had  a wheelchair for a few months  at school and was carried up and down stairs at home. We saw her slowly bounce back. Her hair came back brown and wavy and every single apt , cough or sneeze made me hysterical. She was in remission for 14 months.

Hunter Mary 4In December, 2008  my daughter started not feeling well. I was concerned, but kept her home from school and she said ‘No mommy, I feel SICK again.” The next day or so , she showed me a bruise where she said another student had bumped into her. I was in awe. My daughter’s whole chest was a huge bruise.  It was purple and blue and I was in denial for a minute. I went to the school and had a meeting with the principal. I showed her Hunters chest and said HOW HARD DID HE HIT HER? Then I calmed down and made an apt at Maine Childrens Cancer Program. Hunter looked sick. She looked pale and if I touched her arm it would bruise. Her skin was like porcelain.

Dr S said it was either that the cancer was back or that it was a rare side effect of Tcell treatment. After Hunters blood went to Johns Hopkins, we were shocked and scared to know Hunter had contracted the one in a million, potentially fatal, myelodysplastic syndrome with refractory anemia and ringed sideroblasts. I suppose ONE of the five hundred consent forms I signed must have warned me.  It was bad bad news. The only way to save Hunter was a BMT. She had a  bone marrow drive with 76 matches  for donors, and said she did not want it. BMT meant daily full body radiation, GVHD and meant a 4 month stay in Boston with no guarantee. 
Hunter Mary 1My daughter would have mouth bleeds instead of nosebleeds. It would pour out of her mouth and gag her. To go to school meant a special biohazard trashcan and she was so sick of being sick. I lay with her in her bed one night in February  and she told me she was not going to have any more treatment. I told her I understood. I told her I respect her decision that she would die and she said she knew but she wasnt scared. She was scared of leaving me. I kissed her on  the forehead and she was burning up. She was so ready. She had a pneumonia and contracted ARDS. Acute Respiratory Distress Syndrome is 50 percent fatal in healthy adults. Even IF she survived, she would die anyway.  Hunter died in Childrens Hospital Of Boston March 11. 2009. She died 11 weeks after the initial diagnosis. It was horrible to watch her suffer and I held her hand as she left this world. I was so lucky to have her.
Hunter Mary 2Fly high precious girl!!!  We miss you every day. From beginning to end, we did it together. 
For Hunter Mary Cynthia Labbe  9/30/98 to 3/11/09