Action for balancing cancer care and the pandemic
During this time of the corona pandemic, FCCRS is facing the challenging needs of assisting children with cancer in this unusual situation. As COVID-19 is a source of the pandemic, with increasing incidence occurring across the world, it is without question that the needs of patients with particular vulnerabilities should garner particular attention.
Given the specialized needs of cancer patients, it is imperative to consider how we, as an organization may address and communicate how COVID-19 could impact the timing and delivery of cancer care, and to communicate this information to the community.
Providing information for cancer care during pandemic
In the spirit of sharing information, here is what FCCRS is doing to handle cancer care in the back- drop of COVID-19. FCCRS is educating the cancer patients and the community in the following way:
Risk for Cancer patients
IT is reported that people with cancer, people who are in active cancer treatment, older patients, and people with other serious chronic medical conditions, such as lung disease, diabetes, or heart disease, are at higher risk for the more severe form of COVID-19 that could lead to death. Recent data have shown that people with active or progressing cancer may be at higher risk than those whose cancer is in remission. The same rules apply for people with cancer as for those without cancer:
Guidance & Best practices:
Will anything change with my cancer-related medical visits?
It is important to have regular check-ups and vaccinations and seek medical care as needed. Always talk to your health care provider about any signs and symptoms that worry you.
1) If you are scheduled for cancer treatments, have a discussion with your oncologist about the benefits and risks of continuing or delaying treatment
2) Due to the COVID-19 pandemic and the increased risk of exposure to the virus by going out in public, most hospitals and clinics have changed their visitation policies. Some may allow 1 visitor per patient, and others may allow NO visitors. Before heading to your medical appointment, check with the clinic or hospital for their current visitor policy.
For Community Safety
1) Avoid any social gatherings. If you must leave your home, keep a distance of at least 6 feet between yourself and other people. Only leave your home for essential reasons, such as buying groceries, going to the doctor, or picking up medication from the pharmacy.
2) Wear a cloth face covering or mask and make your trip out as brief as possible.
3) Another alternative is to have your food and medications delivered, so you do not have to leave the home.
4) Be sure to keep enough essential medications, both prescription and over the counter, to last for at least 1 month.
5) Create or update an emergency contact list that includes family, friends, neighbors, and community or neighborhood resources who may be able to provide information or assistance to you if you need it.
6) In order to stay connected to your support system, connect with your family and friends virtually, through video chats or phone calls. Some examples of technology that can be used for video or other live chats are FaceTime, Zoom, Google Hangouts, and social media platforms, such as Instagram and Facebook.
Providing HOPE & INSPIRATION
FCCRS has made a support group to educate people how to meet the needs of cancer patients during this crucial time.
We welcome our survivor story tellers who will share their experience.
Survivor Success Stories
Story # 1
Simran Jatar
Give us some insight how your journey with cancer was.
My name is Simran Jatar and I am a childhood cancer survivor of 14 years. Although my treatment ended many years ago, the physical and psychological effects of cancer will stay with me forever. Although I may be cured of cancer that does not indicate that I am healed from its consequences. When I was eight years old, I was diagnosed with a rare bone tumor, Ewing’s Sarcoma, in my right calcaneus bone. Throughout the course of a year, my little body endured 14 rounds of chemotherapy, four surgical procedures, 6 weeks of radiation, 21 blood transfusions, and countless needle pokes and scans. There was a point where we had to make the decision to either amputate my leg from the knee down or take the chance with radiation. Fortunately, the latter has been in my favor all these years. However, I still live with the side effects of my radiation and chemotherapy and am constantly finding new ways in which it continues to affect my long-term health.
Now, as a 22-year-old, I have spent the last 14 years of my life being heavily involved with the Texas Children’s Hospital Cancer Center in Houston. Last year, I graduated from The University of Texas at Austin and have recently been working on my Master of Public Health degree at The University of Texas Health Science Center in Houston. This August, I will begin medical school at Georgetown University School of Medicine in Washington, DC with hopes of becoming a pediatric oncologist one day. I hope to continue to use my experience with cancer to positively impact families going through the same circumstances in the future.
I fully support the Foundation for Children Cancer Research & Support and encourage everyone to continue to educate themselves on how pediatric cancer affects children and their families. I cannot express enough gratitude to every healthcare professional, friend, family member, and stranger that supported me in my time of need, and I can assure you that every little bit makes a difference in a child battling cancer’s life. I was fortunate enough to receive treatment at Texas Children’s Hospital, but so many children around the world do not have access to the resources I did.
Please support FCCRS and the war against childhood cancer! No children should have to fight for their lives, but if they have to, they should not be doing it alone.
How did you manage the days when you were feeling very low and drained/How you kept yourself in positive mode, did you talk to people, or you only went with the gut feelings?
I always remained positive throughout my treatment. I had a huge support system in my family and friends and that got me through my experience. As a patient, there is a lot of pressure on your attitude because that dictates the mood of everyone who cares about you. Although there were very difficult days, keeping my spirits up allowed me to make sure both my caretakers and I were healthy emotionally, even if I was not physically.
I used to love forming relationships with everyone in the hospital and that helped it feel like a home away from home. Even to this day, I still hold those relationships, and my experiences at the hospital very near to my heart!
Did you believe in prayers and other faith groups?
At the time I went through treatment, my family became very religious, as a way to find some kind of hope. I think religion helps people get through difficult times because it allows them to believe in something bigger than themselves. By culture, we are Hindu, but prior to my diagnosis, we were not heavily involved in our religion. As I have gotten older, I have realized that although I believe there is a higher power, I do not identify as a religious person. I love my Indian culture, my Hindu background, and I genuinely respect all religions. However, I myself find that it is more healing for me to give back to the community and spread positivity and love to those who need it the most.
Story #2
Manju Mittal
Give us some insight how your journey with cancer was.
The ‘c’ word always scares people, and this came into my life in 2017 when I self-diagnosed a lump in my breast. I immediately ran to my doctor and sure enough was diagnosed with stage two breast cancer. Fearing the unknown, I thank my doctor who explained everything in detail about the treatment which took care of the anxiety and fears. I was determined to fight it with positivity and to live a normal life.
How did you manage the days when you were feeling very low and drained/How you kept yourself in positive mode, did you talk to people, or you only went with the gut feelings?
I also joined a support group which was of great help and which I am still a part of. My treatment lasted for two years so the hospital became my second home. The loving and caring staff there became my extended family.
The one thing I didn’t do was Google as I didn’t want to confuse and scare myself. My doctors were my Google to answer all my questions. I surrounded myself with positive people and fun-filled entertainment. I will always be thankful to God for giving me loving and supporting family and friends who stood by me throughout. These two years have taught me many lessons and gave me patience. I’ve learned to advocate for my health care and to enjoy every moment of life as someone had said “Life’s too short to be anything but happy”.