Cord Blood Used for Bone Marrow Transplant to Treat MDS: Meet Theresa Camilleri- World Cancer Day Series
Save the Cord Foundation recently spent time interviewing 4-time cancer survivor Theresa Camilleri as part of our on-going series "#WeCanICan: Beat Cancer with Cord Blood" in association with World Cancer Day.
Written by Stephani Jacob
What is Myelodysplastic syndromes (MDS)?
Myelodysplastic syndromes (MDS) are a family of rare disorders in which the bone marrow fails to make enough healthy red blood cells, white blood cells or platelets. This is caused because your bone marrow is producing lots of underdeveloped, or immature, cells that have an abnormal shape, size or look. These are called blast cells. Most experts agree that MDS is a form of blood and bone marrow cancer.
One year later, Theresa’s lymphoma created tumors so large that they blocked her gall bladder and liver. She turned jaundice, and needed to have a stent put into her liver to help bypass the blockage. Theresa was put on high doses of prednisone, and began rituximab. Although this treatment regimen was being used to help Theresa’s new issues, it simultaneously created a new dilemma. When a person receives chemotherapy, their white blood cell count drops. Since Theresa’s counts were already low due to her MDS, this made it very problematic for Theresa’s doctor to treat her. She wound up in the hospital with a fever of 106.1, and was put into isolation because she had no white blood cell count. After about a week, Theresa was released from the hospital.
Several months later, once the doctor was able to get her lymphoma under control, Theresa was told that she would need a bone marrow transplant. The doctor could not promise that he would be able to save her again. Next, Theresa was introduced to a doctor in the bone marrow transplant unit.
Unfortunately, a bone marrow transplant match could not be found from her family or in the bone marrow registry. Little did Theresa know, her luck was about to change.
Some magical news was about to arrive while on her annual Disney World trip with her family. “I can remember exactly where I was when I received the news we had been waiting for,” Theresa recalls, “I received a call from my nurse while I was sitting in my wheelchair in the Magic Kingdom!” Theresa was told that there were two cord blood donors, which would both be provided for her. Eventually, the stronger and more dominant cord transplant would take over in her body. Theresa remembers her mom saying, “it is pure, it was a true gift from God.”
Leading up to the cord blood transplant, Theresa had to go through numerous chemotherapy sessions and full body radiation to wipe out her entire immune system. The purpose of this was so her body could prepare to receive a new and healthy immune system. Because it was a cord blood transplant, it took longer for the new stem cells to work. Therefore, Theresa had to be away from her family, and in total isolation for two months. She had a port and a catheter to allow her body to get the fluids, medications, and the nutrition needed.
There were months of blood and platelet transfusions, close monitoring of Theresa’s immune system, learning how to eat again, and getting her whole digestive system back to being healthy. Theresa recollects, “Having a cord blood transplant was the most difficult thing I have done on this journey,” adding, “I was weak, I was in pain, but I had hope in my heart and faith flowing along with the new blood system in my body. I had a whole new immune system, and a new blood type, but I was still Theresa and grateful to be alive.”
Theresa credits her family for being an integral part of her journey back to health. During those two months in the hospital, Theresa’s husband, after working a full day, would commute from Long Island to Manhattan every night to be by her side. Once released from the hospital, Theresa was unable to resume her normal lifestyle until her body healed and her immune system grew stronger. In addition to her family taking her to doctor’s appointments, there were many everyday chores and errands that the family had to take charge of. Theresa reflects on the countless days her mom stayed with her, at one point grabbing her hand and saying, “don’t worry, I am here.” Theresa remembers her son transferring to a local college to be closer to home so that he could help out. He was his sister’s transportation, went grocery shopping, and was just there to make Theresa happy. There was also Theresa’s “little nurse”, her daughter, who made sure she took all her medicine, while ensuring Theresa was as comfortable as possible. The blood and platelet transfusions were given by Theresa’s family, friends, and also from her brother's peers in the NYPD and Fire Department.
She lovingly recalls, “My children, my husband, my mom, my sister, and my brother were all my immediate strength. I am a woman blessed with an amazing family.” There was no doubt that Theresa was not alone in her painstaking battle back to health.
After a grueling journey, Theresa advises those currently diagnosed with cancer to be their own advocate, finding doctors in whom they have faith. Theresa’s doctors continue to be vigilant, watching her case carefully. During a routine CAT scan recently to monitor Theresa’s lymphoma remission, a doctor noticed fluid around her ovaries. Eventually, this led to an early diagnosis of ovarian cancer. After a full hysterectomy was performed, biopsies revealed that there was no more cancer. Incredibly, Theresa was now a four-time cancer survivor. She states, “I am so blessed to have such amazing doctors that I feel are always one step ahead.” In addition to Theresa’s dedicated medical care team, the cord transplant not only cured Theresa’s MDS, but has also kept her lymphoma in remission.
Theresa suggests taking the cancer journey one day at a time.
“When the chemo began, I would say to myself, “Okay, one done. I almost gave myself a hug and a chance to breathe by doing that… otherwise, if I looked at the whole journey as one big thing, it became overwhelming and I could not focus on today.” Theresa is very passionate about helping others understand all that is out there for people suffering with a cancer diagnosis. She states, “I might have gone through a lot to get to the place where I am today, but I am here, I am alive and well. And, it is all because of this precious gift of life from a beautiful baby and its loving parents.”
Theresa asks for any parents that remain skeptical about whether a cord blood transplant is necessary to listen to her story.
It is now twelve years since her original diagnosis, and she is so grateful to every person that has helped her along the way. Theresa does not take a day for granted. “When we were little, my daddy taught us to "take time to smell the roses." This hasn't been easy but I do what I have done from the beginning, I take it one day at a time. If today isn't good, tomorrow will be better. I have love, I have my faith and I have hope.”
Cord blood is truly global. It always has been. Yet, the role of cord blood in modern medicine has changed dramatically over the years. Join us at the World Advanced Therapies & Regenerative Medicine Congress 2018 in London this May to learn how the industry has changed and how cord blood is influencing the medicine of tomorrow.
Save the Cord Foundation will be joining an incredible line up of speakers who will be presenting a variety of topics including:
Here are just a few of the featured speakers we are looking forward to hearing (in order of the agenda):
View the agenda: DAY 1 and DAY 2
This conference has grown significantly over the years yet continues to provide a unique opportunity to hear and meet with cord blood experts from around the world in an intimate setting. Unlike other conferences, the cord blood tract is run in parallel with other tracts focused other areas of medicine which gives attendees and speakers an opportunity to expand their knowledge base and really explore the impact of cord blood within a greater context. Likewise, the cord blood tract routinely welcomes attendees from outside of the cord blood industry thanks to the format of this conference. Over the years, this crossover has prompted a wonderful exchange of information and networks.
World Advanced Therapies & Regenerative Medicine Congress 2018
May 16-18, 2018
Business Design Center
15% discount for the Save the Cord Foundation community of readers and supporters, use code: KYPJ
We are proud to announce the 3rd Annual Arizona Cord Blood Conference: Advancing Innovation. Join us for this free live event on April 13th, 2018.
Are you a parent interested in learning more about cord blood?
Would you like to understand how cord blood is currently used and how it may be used in the future?
Are you a doctor, nurse or midwife who would like to learn about this medical resource from world renowned cord blood experts in order to better understand how to advise your patients?
If you answered yes to any of these questions, then we highly recommend that you register for the upcoming Arizona Cord Blood Conference 2018.
The 2018 conference is building on 3 years of success and a growing interest in cord blood from parents and the medical community. Over the past year, we have seen exciting advances not just in cord blood research but also cord blood donation programs. The industry is maturing and the general public is beoming more aware of the possible uses for cord blood today as well as tomorrow. The speakers at this year’s conference will reflect this progress in numerous ways:
• Dr. Wise Young (W. M. Keck Center for Collaborative Neuroscience at Rutgers University) will speak about his groundbreaking research using donated umbilical cord blood to treat spinal cord injuries.
• Dr. Juliette Barker (Sloan Kettering Cancer Center) will give her insight on how unrelated donor cord blood can be used in the treatment of acute leukemia or myelodysplasia with reduced intensity chemo.
• Dr. Filippo Milano (Fred Hutchinson Cancer Research Center) will compare stem cell sources (including cord blood) for stem cell transplants and how to improve outcomes and costs for cord blood recipients.
• Dr. Michael Chez (Sutter Institute for Medical Research) will speak about his recent publication “Safety and Observations from a Placebo-Controlled, Crossover Study to Assess Use of Autologous Umbilical Cord Blood Stem Cells to Improve Symptoms in Children with Autism.”
• Dr. Maria Manriquez (University of Arizona College of Medicine – Phoenix / Maricopa Integrated Health System) will speak about how to implement a cord blood donation program from the administrative perspective.
• Dr. Brian Freed (ClinImmune Labs – University of Colorado) will give his insight on the current status of cord blood transplantation as well as the future of cord blood transplantation as a viable stem cell therapy. He will also identify the legal, regulatory and financial barriers to cord blood banking success.
• Diane Paradise (Cancer Survivor and Cord Blood Recipient) will speak about her long battle against Hodgkins Lymphoma. After years of treatments, Diane was told there were no other options. She learned about cord blood and it ultimately saved her life.
• Lyla Edgington (Cord Blood Recipient - Hurler's Syndrome Survivor) and her family will speak about young Lyla's struggle with Hurler's Syndrome and how a cord blood donation has given her a second chance at life.
For students interested in possible STEM careers, this conference will provide a unique opportunity to learn directly from those in the cord blood industry and discover new opportunities that are emerging thanks to exciting research and current uses for cord blood stem cells.
For health professionals, you will have the opportunity to meet with leading scientists in this field and understand how your practice could immediately have impact or benefit from cord blood collections. As a medical practitioner, you can also earn CME credits at this free conference.
For hospital administrators and policy makers, this conference will be key to better understanding the current status of the cord blood industry and how we can work together to improve it.
ARIZONA Cord Blood Conference
Friday, April 13th, 2018
8:00 AM – 5:00 PM
Double Tree by Hilton Tempe
2100 South Priest Drive, Tempe, AZ 85282, United States
FREE AND OPEN TO THE PUBLIC
Spaces limited. Registration required.
PRE-REGISTER now for the 2018 Arizona Cord Blood Conference: Ap
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This event is sponsored by the Arizona Biomedical Research Commission
in partnership with the UA College of Medicine-Phoenix,
the Arizona Public Cord Blood Program and Save the Cord Foundation.