Please join Team Emary #teamemary we hope you will leave messages, post photos and send her positive thoughts and healing prayers for her. Emary was diagnosed with Hodgkin Lymphoma in February of 2013 as you can imagine this was devastating news for her and her family. Emary started having chest pains that fall and after many trips to the ER they found a large mass in her chest which was later diagnosed by a biopsy as Hodgkin Lymphoma. Emarys tumor was the size of a baseball hard to believe this was happening to a 14 year old. Her tumor is located in the middle of her mediastinal region which includes the heart, aorta,trachea, bronchi, lymph nodes and thymus gland. Because of the location this makes it difficult to do the biopsies and removing the tumor is not an option. Once the type of cancer was confirmed she started Chemo therapy at Childrens Mercy Hospital in March - July before starting Radiation treatments a Scan showed great news the treatment was working. Now they could move ahead with Radiation treatments she went through 3 rounds of Radiation July - August. On September 25 she was told she was in remission but in just a short time less than 60 days she began having chest pains again. After another scan she received the devastating news that the mass had returned. She had to under go another biopsy the results came back as scar tissue so a 2 biopsy was necessary this result showed it was inconclusive. So the tissue sample was sent to Mayo and it was confirmed once again she had cancer. Now that her type of Hodgkin Lymphoma is what doctors refer to as resistant or recurrent Hodgkin disease. The cancer went away at first with treatment, but now has come back in the same place. This sometimes happens shortly after treatment and in some cases returns years later. During this time her doctor consulted with doctors from Sloan Kettering and we were hopeful that this new plan of chemo therapy treatments was going to be just what she needed. After this round of Chemo the scan showed a little improvement. Not the news we were hoping for. So once again they consulted with other doctors at John Hopkins and came up with a new plan by adding steroids this is something Emary had hoped to avoid. This last treatment was 8 weeks. Its now January 2015 and Emary has went through several different rounds of chemotherapy. So far her tumor has been resistant to all treatments. The most shocking news was during this last round of chemo and steroids the expectation was that the tumor would be gone or at least had shrunk. She got the shocking news that it had actually progressed! The tumor had tripled it original size. I have to tell you over the last 2 years I have witnessed Emary blossoming into an amazing young women. Her tremendous attitude and strength is way beyond her years. She has always had a special spirit about her. To watch her go through all of this between the age of 14 and soon to be 17 is something a child and parents should not have to go through. This kid has been truly blessed to be surrounded by a solid group of friends and loving family that support her. So because a cure is the main goal her family is doing everything to make sure that happens. #cureemary is in full force. Things are happening very quickly after meeting with doctors both Childrens Mercy and KU they have decided to go with KU. Starting Monday she will start a out patient (Autologous Stem Cell Transplant) Autologous -is when stem cells come from your own blood or bone marrow. This process will be a 30 day process. During this time Emary will be going to KU for her treatment every week sometimes 2 times a day. Her room will become a mock hospital room. Needless to say at this time we are not sure she will be up to or able to have visitors. We will try to communicate more on this as we can. Outside food and flowers cannot be excepted for Emary she will be under a strict diet of controlled food for safety and sanitary reasons. Once we know more on this subject and how you can help her family we will post. After the Auto Stem Cell Transplant Emary will be in recovery mode for 100 days. Then the next step in #cureemary is to do a (Alllogeneic Bone Marrow Transplant). Allogeneic is where the stem cells are harvested from a donor. We are not sure all the details on this stage so we will post as we know. Emary wishes that this FB Page #teamemary is a place for family and friends to share and send positive, healing thoughts her way. The power of positive thinking and living is what we hope to give her while she overcomes this rather large bump in the road. We will be adding a donation site to help children like Emary soon. Feel free to share Emarys journey with others.
Posted on: Thu, 15 Jan 2015 06:59:20 +0000
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