I have to be honest; I am tearing up as I write this post. September has a lot of health observances, including Childhood Cancer Awareness Month. It is fitting that this morning when I went to choose my exercise clothes out of my dresser that I came across this long sleeve shirt from my time working in the Oncology & Bone Marrow Clinic at The Children’s Hospital of Philadelphia (CHOP).
As a healthcare professional you are not supposed to get too attached emotionally to your patients and families. I can tell you that it is truly easier said than done. In 1999, I moved back to the Philadelphia area after working at Johns Hopkins Bayview Medical Center in Baltimore, MD. My former co-op boss during my Drexel undergraduate years, Beth Leonberg (friend, mentor, and colleague), said there was a position open at CHOP where she was the nutrition director at the time including outpatient oncology and bone marrow transplant. I wasn’t sure I could do it. Since my dad was sick most of my childhood with a brain tumor and died of cancer when I was only 9, cancer has always been a passion of mine, but kids could I do it? Beth was sure I could. I ended up working there at least 5 years with a time on the beginning and end of my career at CHOP.
As I see the Facebook status updates about Childhood Cancer Awareness Month from The Children’s Hospital of Philadelphia (CHOP) it brings back so many memories and faces – babies, children, teenagers, and adults treated at CHOP because they have pediatric cancers. Parents, grandparents, and friends visiting and waiting with the “patient” during the forever-long clinic appointments that often end-up in a hospital admission. The numerous medical rounds including “Tumor Board” discussing newly diagnosed patients, current inpatient issues, tough cases and who is waiting to be matched for a transplant.
The kids are really quite amazing and much better patients than most adults. Many kids would smile and laugh all while getting blood taken, being given chemo infusions in the day hospital or waiting for blood counts. I have so many memories of the children and their families fighting cancer. Now as a mom, this is even more emotional to think about. Seems like a great day to remember all the kids who lost their fight in the battle to cancer. You are missed and loved!
I am thankful for the many children who have been cured, but there is still more to be done. One former CHOP oncology patient and cancer survivor, Chelsea, is doing her internship at NIH to become a dietitian! Chelsea was a Teaching Assistant for me when I was teaching at Drexel and was fabulous. She is a rising star in my profession.
I am sure I should be talking about nutrition in here somewhere, but let me just say that in my experience these are my top five nutrition tips as a Registered Dietitian who worked in a cancer clinic.
- During cancer treatment there are times when any kind of nutrition a child can tolerate and interested in actually eating is better than not eating including ice cream, candy, hot dogs, greasy cheesesteaks etc. Children are growing and their caloric needs are higher than adults, so when they don’t get enough calories over time it really creates problems. Studies have shown that children with better nutrition during treatment tolerate therapy better and have less delays in treatment.
- Tube feedings, often temporary, can be a good thing as it stops the worry and fight with parents about eating and the child feels better. Children undergoing high risk therapies, who have brain tumors, head and neck cancer, or who had bone marrow transplants may need supplemental tube feedings and “if the gut works use it”. Children who have had a bone marrow transplant often need semi-elemental formula that is easier on the digestive tract.
- Protein, Protein, Protein: protein needs are increased in cancer and children have higher protein needs than adults. Find a way to get enough to spare protein breakdown.
- Symptoms can change quickly during treatment. A Registered Dietitian can provide education and resources to get the child through these times. The American Cancer Society has a great free resource for nutrition for the child during cancer treatment! Let your healthcare team know about your symptoms they also have ways to help!
- Food can be a big issue for a child and family. Food is the one thing that loved ones feel they can control during this time. Often developmental feeding may be less of a priority, but can cause issues later. Try to keep advancing a child’s development during treatment when possible including feeding and food. In children who are tolerating treatment and eating well, often friends and loved ones want show them love by offering them “treats” which can contribute to other health problems. Instead offer healthy options or just spend time with them playing.
Childhood Cancer Awareness Month is also a great time to thank all of those working hard to fight cancer. I have worked in many healthcare settings and I can honestly say that the oncology team at CHOP is amazing in every aspect. From the registrars to the medical assistants to child life therapists, psychology, and social work, to the nurses and nurse practitioners and fellows and attending physicians, to the pharmacists and transplant coordinators, and case managers everyone has one goal in mind – cure the “kid” from cancer and take care of them the best they can while doing it. I am sure I am missing a few, but literally a whole host of people working together for one cause and it is why at 4 pm on a Friday almost ready to leave for the weekend if I was called back to clinic to help a patient – I would go! The work environment was positive given the tough issues at hand and the entire team was valued. Working in the Oncology Clinic at CHOP has left an impression on me to this day.
It is a great time to also remind everyone to take care of himself or herself so they can take care of others even better! A few reminders are in order which are actually great for anyone dealing with a chronic illness.
Healthcare professionals – Stay hydrated, you know you could do better! EAT regular and healthy meals (including you dietitians), you know you are often so busy taking care of others you do not take care of yourself! Make sure you get some stress relief, a massage, exercise, and talk to a mental health professional if needed to let out the stress of taking care of sick people and their families. TAKE vacation, a real one! It is ok to get emotionally attached that is why you got into this field to help others, but you need a way to deal with it healthfully as it can cause chronic stress.
Friends – If you aren’t sure how to help your friend with cancer, ASK. They may be able to tell you what they need. Spend time with your friends, go to clinic visits if needed, bring food, help with bills if able, donate to help cancer research, be an ear to listen, do a chore or an errand, or offer to “babysit” so the parents can get a break once and a while. If you life far away, send a care package with healthy snacks, funny card, relaxing soaps etc. There are so many supportive things friends can do to help support a family dealing with cancer. Also, if a loved one dies from cancer, don’t forget your friend and the life lost. Remember the hard dates and still donate for the cause. Friends are an important part of this journey!
Parent & Caregivers – get rest, take a break from the constant care when you can. Ask for help, often people don’t know how to help you but they really want to and often don’t know how to ask. Remember the good days as there will be rough ones. Take some time and get some stress relief! Join a support group, online if needed, get a massage, get a manicure/pedicure, see a funny movie, meet a friend for coffee, exercise, or call a friend, or just do nothing once and a while! Seeing a mental health professional is not a weakness, you are dealing with a lot and use the help out there! You will be able to take care of your child better. You don’t need to buy your healthcare team gifts. It is our job to take care of you and we thrive on it, however those little notes you write us mean the world! I still have all my notes from patients and families.
Those with Cancer- Don’t lose hope. I have seen miracles happen. Let your feelings known, you are going through more than you should have to and you need to let it out. It is ok to be mad, angry, and upset, but you have to find a way to kick cancer’s butt. You may not know how to deal with your feelings so the therapists are your guide to helping you along with your family and friends! Eat well when you can- food is like medicine and will help you tolerate therapy. Take advantage of all of the resources available to you and Make A Wish. You deserve the best care and treatment. Hug your parents and friends they worry about you and your hugs mean a lot, you all need them!
Beth was right, I could work in the oncology clinic at CHOP at is has changed me for the better all around. For Alex, Andrew, Kristina, Danny, David, Jill, Mike and more you are never forgotten! Of course Alex whose legacy is possible by you and her parent’s who have shown strength during the toughest of times. You have forever warmed out hearts. I still picture Andrew in his Spiderman costume in clinic telling the staff about Halloween even though he was one sick kid, g-tube, port, and all. You brought a smile to all who knew you!
During Childhood Cancer Awareness Month please think of others that need help and do what you can. Hopefully one day we won’t need to fight cancer as there will be a cure!
