(UPDATED)Treatment for Rosalie

Hi, My name is Kylie Barresse and my sister Heather Barresse and Brother In Law Anthony Bontemps had their babygirl on October 17. Prior to this Heather has had a miscarriage so she wanted to do everything she could to make sure this went smooth, they needed this baby. This put Heather out of work on disability for around a year in total with her miscarriage. Anthony worked extremely hard this whole time but, he will need to take time off of work because Heather had an Emergency C section because the baby’s heart beat was irregular. Rosalie Elise Bontemps was born at 12:20 am. She was immediately rushed to NICU in morristown away from her mother who had to stay at Newton. Less than a day later they told our family that she had an enlarged liver and needed a platelet transfusion. They were 99% sure it was Leukemia due to the makeup of the cells but they couldn’t be sure. The next morning they confirmed it was AML (Acute Myeloid Leukemia). This means her bone marrow was producing a large number of abnormal cells which is effecting her white blood cell count. So far at less than 4 months old little Rosalie has had 4 bone marrow samples and 2 spinal taps which are very painful, and Rosalie has been awake for most of them. She has had countless blood transfusions and platelet transfusions. After her first round of chemotherapy things were looking good, we thought Rosalie was in remission because her bone marrow was 100% clear, then the next day she got chloromas on her head and my sister basically saved her life by telling the doctors they needed to do a biopsy and they wouldn’t listen to her because her marrow was clear. Then we found out the cancer is only in her skin now which brings rare to a whole new level. Rosalie had two surgery’s for broviacs put in her chest, which is a line to her heart where they administer chemotherapy, she will need another one of those surgery’s for a different broviac before her bone marrow transplant. She is currently in her second round of chemo, which if you didn’t know is absurdly expensive ONE dose is ATLEAST $18,000 and she can have up to 4 doses a day. We are searching for a bone marrow match, which is very hard to find, often times families have to search across the globe. Rosalie will never able to ever start a family of her own. The donor cells can attack her body causing serious problems. She will be undergoing chemo until we can find a match. Heather and Anthony will be transferring hospitals and have been looking at Seattle, Tennessee, Texas, CHOP, Boston and John Hopkins, which are all very far from home, since AML is such a rare disease. Either way they both will not be working and need to move far away from home for months and are unsure where we will be staying. The Chemotherapy is so strong that it’s going to kill all of her bone marrow and she’s at risk for very serious life threatening illnesses. When Rosalie gets her transplant, for 100 days Heather and Anthony will have to stay within 20 minutes of the hospital at ALL times, this means no family visits, no date nights, etc. This family has made the ultimate sacrifice and is just doing what they have to do to keep their precious baby healthy. Rosalie essentially has no immune system so when she is in the hospital (which my sister and brother and law have been living in since October, with only two brief visits home) only her mother, father and nurses can see her. April 24th Rosalie has her Bone Marrow Transplant and 10 days of chemo that her body will never recover from. The doctors are giving her the donors bone marrow to recover all her bone marrow, blood system and immune system. Rosalie has gone through more than I have in my 18 years on this earth, we often take things for granted and stress the small stuff in life, but she is fighting with all she has, and she doesn’t even know what she is fighting for. Life is so precious and she has showed hundreds of people that. Anyone who had been blessed to be in Rosalie’s presence knows how much of a happy baby she is, and how she loves everyone! She is such a beautiful baby girl, but we need your help. With all of this treatment comes a lot of bills and time off of work,insurance will not cover all of the expenses. Rosalie is my hero and she is a fighter, she will beat cancer but we need some help! Anything will help, to get a head start on this really long journey for my family. Please send your prayers and donations if you can so my beautiful niece can be well. Even if you do not donate please share to help spread awareness on childhood canicer. Thank you! Fight like a girl!
Rosalie’s instagram is @FightForRosalie if you would like to follow her journey!
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