Our beloved Heidy was recently diagnosed with an Angiosarcoma. This is an extremely rare tumor, therefore making it difficult to standardize therapy.
Angiosarcoma was first identified in 1934, however since that time minimal progress has been made to improve survival rates and treatment plans. This is an aggressive and often fatal prognosis, therefore requiring an aggressive approach. Because of the rarity of this diagnosis, expertise with this condition is also minimal. Heidy and her husband Arnold have started traveling to seek out these experts. Due to the fragile state of this tumor she is unable to fly, therefore requiring all travel to be done by ground.
January 15, 2020
I continue to feel better each and everyday since surgery. I was able to return to Jacksonville on 12/18/19 to start chemotherapy at home! This was such a blessing to be able to return home and be around family and sleep in my own bed! I was able to see the oncologist Dr. Verma when I returned on 12/18/19 and started my chemotherapy the following morning on 12/19/19. After receiving the one dose of Gemcitabine my platelets remained too low to continue the chemotherapy the following weeks.
Thinking over the past few weeks of my journey, a few months ago we didn’t know if we would spend this Christmas together as a family. The holidays are always a busy time for everyone as we try to prepare to feed our souls and faith with what is most important at Christmas and also balance playing Santa for our children so that they have exactly what they want under the tree. This Christmas was a wonderful and joyous time, and we were able to celebrate the birth of Baby Jesus with family and friends. Over the journey we have met so many people, the outpouring support, encouragement and love we have received from our family, friends and community leaves us forever grateful as we would not be here today if it wasn’t for every expression of love we has come our way. We have learned to appreciate every little moment, to slow down and smell the roses, and enjoy every single day as we are not promised tomorrow. We have learned to greater appreciate and cherish those in our lives more than ever and to never take anything for granted. Although we felt we did that before, we now have a different perspective and appreciation for this and this has made us better people and a better family. And with the newest addition to our family, we have a new baby cousin Cali who reminds us how great life truly is.
Our lives and family have changed so much in the last half of 2019, and 2020 will continue to bring us many blessings. We have so many to be thankful for starting with GOD as our leader, our family, our friends, and our community. Our faith continues to grow stronger each day as we continue the journey to fight to live.
Because of my low platelets it was decided that we should return to Houston and regroup with Dr. Ravi. He has decided to change my chemotherapy regimen to a drug that can be given with lower platelets – Taxol. We are hopeful that this will start this week. We are positive that this is going to help us win the fight against this awful beast. I wish all of you the best year ever because we do not know what the next year will look like. Love one another and cherish every moment.
We are so very thankful for everyone’s continued love, encouragement and support.
December 3, 2019
I underwent open heart surgery to remove the cardiac angiosarcoma on 11/21/2019. Thank you to God, my medical team and my family. I have received so many gifts and remain so blessed. I was discharged 6 days after surgery, this gave me the opportunity to celebrate THANKSGIVING with my family in Houston. Although it was not our traditional celebration it was the best. Now the journey continues, they were not able to remove all the cancer but I am hopeful and remain faithful that the plan for the post surgical chemo will help my chances of survival against this awful cancer. The continued support and prayers mean so much to me and my family.
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January 17, 2020
So happy to read your latest update. You are in my thoughts and prayers. Stay positive, keep fighting the beast and know you are loved and missed at Mayo. ❤️Hugs, Peggy
Peggy Walsh Johnston
December 28, 2019
I work with your sister Kristy. She shared that you have been such an inspiration to her and after reading about your fight I can see why. Praying for you and your family during this difficult time.
December 24, 2019
Heidy - your attitude towards the cancer is amazing, inspirational, and an awesome example of your faith. God is pleased I'm sure! You are ministering to me just as God is filling you with His strength! I look forward to the day that you "ring the bell!" Merry Christmas to you and your family!
December 24, 2019
Merry Christmas to the most beautiful, strong, and sweetest sister in the world!